January 21, 2025

Sometimes I have ideas about things to write about and other times I just sit down and start pecking out words in no order just because the silence here is deafening now. Just putting all the thoughts on the page in hopes of lessening the chaotic nature of them bouncing off of each other like billiard balls in my brain.

I haven’t gone back to work yet. My workplace, my bosses, are incredibly patient and supportive. I simply do not know how to keep going. I assume the best way is baby steps a little along. I just cannot seem to be able to fit those tiny baby shoes to my unsteady feet in order to learn how to walk again. Nor do I really want to if I am being honest. It seems like a betrayal. To try to move on with my day or even my life without him. As if he didn’t matter and didn’t make a huge difference in who I am as a person. I am altered now. I don’t know how to be without him yet. Nor do I want to accept that I am.

I am simply lost most of the time. I lose time throughout the day. I don’t realize how the clock comes to read 3:30am and then seemingly moments later it says 5:15pm. The pain is quite visceral all day. I am trying to focus on how lucky I have been to have been loved by the most amazing and flawed human ever. I know some people never experience this or they experience it later in life. I understand I had my time. I understand I should feel grateful for the time we had. I feel extremely grateful and extremely bitter at the same time. Why us? Why him?

The dash between the dates wasn’t long enough. Period. I could really stop there. That is what I think about constantly and consistently all day every day.

David was full of good intentions that he did not always follow through on. He wanted to do so much more with his life. He had big plans to do things around the house and yard and in his classes. He drew out his ideas. Discussed them with enthusiasm. He wanted to be more social and make friends. Neither of us knew exactly how to go about that when we were young and most especially as we were much older. He also suffered with depression and ADHD which separately makes you have great ideas and plans and and makes it difficult to achieve the things you want to do. In combination with one another, it makes accomplishing even small tasks nearly impossible for some people.  He journaled for years up until he was diagnosed and then the journaling stopped. He intended to pick it up again with this blog. He has some unfinished blog entries and notes of things he wanted to talk about. He just never felt like he could. I don’t think he accepted what may have been coming or maybe he did and that is why he didn’t publish more.  Despite all he wanted to do himself, he always had a way of making me feel my words and feelings were important. He would stop what he was doing to hear my anxieties or ideas. I interrupted his thoughts on more than a thousand occasions and that was unfair of me. He also never let on that he minded. His smile or laugh would fix everything. I miss his paroxysms of laughter. Telling me one of his hilarious stories, or watching one of his movies or just watching something on social media. When I felt splintery, he had a way of holding me together like glue. His gravity held my orbit. When I was sad or happy or scared, he is who I wanted. He is who I still want. He centered me. I cannot know if it was always the same for him, but he fulfilled my life. I loved (love) him with my whole heart. He loved me the best way he could. The only way he knew how. We watched a movie some time before he died (A Man Called Otto) and there was a song in there with a particular line that stood out. I knew then when I heard it that it would have meaning in days, months, decades to come.  I have listened to that song so many times since he passed away…the line is there is no color in the world without you. Today, it snowed. Everything was blanketed in white. I was looking out as it got closer to evening time. Black and white. That is what I see now. There is no color. Not really. Just dull hues of the same shade. Will I ever see color again? Do I even want to.

I read it many times before and never truly got it until now. Losing my dad, and then a month later, my life partner it resonates like a siren or a ringing bell…loud, deep and clear for a long time.  Grief truly is love without anywhere to go. All these emotions with no outlet. Grief is love stopped short. Grief has tangible and intangible losses. I feel these losses all day every day. They are enumerable. Some are small and some are mammoth and they add up to countless.

Apparently, a while ago, I was reading about heliotropes and how they love the sun. Then I came across some Greek mythology that mentioned an ocean nymph who was beloved by the sun god who deserted her. She was changed into a heliotrope. These flowers supposedly turn their heads toward the sun. I know this because I made a note as I often do (a habit David also had) when something is interesting so I can go back and look up more about it later. I seldom make it back to those things. I came across that note the other night scrolling through old stuff then immediately had the thought that David is that sun that doesn’t shine anymore, and, me, I am that flower searching desperately but not being able to find him in these continual cloudy days. So, I had to make a note of that to remember to write about it. And here I am writing about it in some discombobulated fashion. So, there’s that.

That’s how I am. Today. Yesterday. Tomorrow.

Here are a couple of other quotes I took down at some point in my phone obviously (Unbeknownst to me at the time) during my time in anticipatory grief.

True grief moves with the body. It inhabits it. It becomes part of your skin. Your cells. And it makes a home there. A permanent home. You learn to live with it but never in the same way as before. ~The Crown Season 5 Episode 2 The System

Gotta have a little sadness once in awhile so you know when the good times come. I’m waiting on the good times now. ~ Bob Ross: The Joy of Painting, Season 23, Episode 3

January 17-19, 2025

SL, Adam and I decided to take a quick trip up the cabin in Blue Ridge where David and I spent so many wonderful days and made the sweetest memories doing everything from exploring the towns, light hiking, grilling out, making fires in the fireplace, looking for bears, watching the stars, entertaining ourselves watching Lifetime movies, and just being.

I knew it would be difficult, but we all thought it would be good to get out and Adam has not seen the North GA mountains in his visits here. We went on Friday, stopped for a few supplies and went in my favorite antique consignment shop that moved from Ellijay. We enjoyed looking around at all the variety of stuff. We picked up some takeout and then ended up playing card games for a few hours after we got settled in. It had snowed a few days before and made for nasty dirt roads to the cabin, but we managed to make it up the rutty, muddy, icy hills intact. The tonnage of mud caked on my car notwithstanding,

On Saturday, it was supposed to rain but we had planned to drive into Tennessee and then up to Lookout Mountain to Rock City. When we got up it was so foggy, but we decided to go anyway. The drive over to Rock City took around an hour and a half and we had no problem finding something to talk about the whole way. Adam shared his playlists with us and even some music he created using his lyrics and AI generated melodies. He is a pretty damn talented lyricist and not a bad guitar player although he would say otherwise.  We made it up the mountain and it was even more foggy up there. Rain was more of a light mist and it was cold but we bundled up and it ended up being a nice day anyway. At least the weather matched my dreary demeanor now. We couldn’t see the amazing views of the “7 States” but the fog made for some pretty interesting atmosphere. David and I had been a few times over the years, and I wanted to go back and take Adam. David said he had been there and done that, but I know he would have enjoyed it again. We missed him. It was weird being on a trip without him. Very weird. I didn’t like the feeling and was sad but tried to just keep moving telling myself what he would have been saying about this or that and pictures he would have been taking. I got separated from the kids for a little bit so I had some time to walk around alone. That was also a weird feeling and just how it is now. Being alone. It just feels so strange after all these years of someone literally by my side. We shopped in the gift shop and I got a patch for David’s bag he carried around. He would grab a patch if there was one when he were visiting someplace like that. Now I just have to figure out how to sew it on because he was the sewer.  I also bought a coffee cup. I don’t know why. I don’t drink coffee and he isn’t here to continue his collection of mugs but I just felt like I should to remember him. He would have liked this one too. We bought some fresh candy fudge and headed back to Blue Ridge.

On Sunday, we slept in a bit then decided to head on back home because more snowy weather was coming in that night. We didn’t want to get stuck on the mountain. They wanted to stop at Expedition Bigfoot: The Sasquatch Museum on the way out so we did that and it was a fun little stop. Another thing David and I said we should do one day and didn’t. We were always in a hurry to get to the cabin and act like teenagers with their parents gone for the weekend, I guess. At the museum, they allow you take all the pictures you want so I took a bunch of the signs and articles to read later. David was a big fan of the 99% Invisible podcast and we listened to it frequently on road trips. One thing we both learned from Roman Mars early on is always read the plaque. It became a mantra to the show and also to us. This is something SL learned from listening along with David also and we make sure to stop and always read the plaque even if we don’t have a lot of time and need to take a picture to read later.

We made it back home in good time since there weren’t many people coming through Atlanta at that time. Always feels like some sort of major accomplishment when you can cruise right through 75 without stopping.  

I was sad and felt very lonely seeing people coupled up the whole weekend, but I am glad we went. I did confirm that I toss and turn away from home without him just as much as I do at home.     

January 15, 2025

Today the tub faucet started to leak. The cold side it seemed. You taught me how to do this before and after the diagnosis. I didn’t want to know how or think about ever having to do these kinds of things myself. I decided to fix it tomorrow and let it drip.

Tomorrow. I got your plumbing tools and went out to turn off the water like you showed me and SL many times. I came back in and got the seat and seal removed. I sent the kids to Home Depot for a part and when they came back, I put on the new part, went and turned on the water and came inside to see it still leaking. New seat and new seal. I didn’t understand. The wrench slipped and cut my thumb and I saw you shaking your head and heard you saying how I wasn’t allowed to have tools or knives because I always ended up bleeding. I immediately missed you cleaning up whatever cut I had and putting on a band aid and kissing it to make it better. I sat on the side of the tub, bled, cussed the old tub faucet, God, and this life without you and then I cried. I went outside into the dark cold night to turn off the water and on the way, I asked you to please show me how to do it. I don’t know if you can hear me. I talk to you all the time and it feels ridiculous but what does it hurt I suppose. I turned the water back off and tried to figure out the issue. I ended up just taking breaths doing what you would have done by reseating it and tightening everything up again. I walked outside in the cold dark to turn the water back on and talked with you some more about how I was supposed to keep doing this when I had no clue what I am doing. I went back inside and the leak had stopped. I put your tools away and thanked you for showing me how to do it before and now. Did you hear me? I miss you so damn much but the tub isn’t leaking.

January 14, 2025

Dear David,

My writing is helpful to me, but it seems to be upsetting people who are able to read it. I don’t think people are comfortable with raw emotions. I write what I feel. I had hoped by continuing it may help people. You know I am not good with vulnerability, but I reached out to someone recently that had experienced spousal loss and the person said some things that has left me wishing I had never said anything at all. I have been going over this in my mind and I don’t understand. I believe you would tell me that people see things differently and maybe my pain brings back reminders of their own that they rather not confront again. At any rate, I did make a big leap and talk to a therapist today. It was painful and I don’t know if I will go back because I am looking for so many answers that no one can give me but you. I don’t want to waste anyone’s time. I made the drive alone and it was sad and scary and I had a lot of anxiety and I had to stop for gas so that was equally ridiculously, unexplainably, intimidating but I did it as I have done in the past because there is no other choice now. You never ever judged me for my weirdness.

The sky was nice coming home. I haven’t seen one like that in a while or maybe I just stopped looking up. I used to look forward to the afternoon sky and sunsets, you know that. Nearly running us off the road looking at the clouds I could never get enough of. Doesn’t seem to be any point or joy anymore. Even in the clouds.  I played tag with a sun beam and a little rainbow prism escorted me the whole way home so that was nice. I also listened to angry loud music on the way back and that was nice too.

I had a rough day yesterday when I had to go and do some legal stuff with the death certificates and things but our attorney was friendly and reminded me of what I needed to do, so I got a few things accomplished. I wasn’t able to think about some things that I still need to do that would remove your name from stuff. All of that seems so cold and like losing you again or erasing you from the life that is still here albeit not the same at all. I went to the grocery store for a few things and the first I have done in weeks since you got sick. It was terrifying and I froze for a moment on an aisle thinking I couldn’t do it and contemplated abandoning the buggy. It all sounds so foolish when you write it down. But it was real and scary to me. The tears were coming stinging and hot, but I managed to make it to the car where I sat and cried for a bit before I could leave. I am so scared of being alone and missing you so much it pains me and it has only been 11 days.  

I truly do believe you can die of a broken heart, and I am trying to not do that but there aren’t a lot of things for me out here. Some people I encountered around town yesterday don’t care about their job much less my immense loss.

SL wanted something from the bakery so while over there of course I had to look at the non-birthday birthday cakes. I got one of those cute little round ones we always looked at but never got because,,,well….you know…no corners. You would have liked the yellow icing. When I got home, I took the fork and just ate a few bites like we liked to do when we got one of the square cakes and couldn’t be bothered to just cut a neat, normal slice like a human being. It is not the same having something I once loved so much without the person I love so much to share it with. Just add that to the ever-growing list of things without meaning anymore. I tried a bath to keep from being a continual drag hanging out with the kids who are so nice to put up with my melancholy and infinite sadness. (You know I always liked that album. I think you bought it for me) Anyway, I added bubbles and tried to talk to you and ask you for some clarity on things and realized I was just staring, and the water had gone cold and the bubbles almost disappeared when I noticed one floating toward me. It looked like a heart. I swirled the rest of the suds around trying to see if that was just a natural formation and couldn’t replicate it so maybe you were trying to talk to me? Hard to not feel like that is just wishful foolish thinking but that is about all I have now. So, I don’t know if I should keep writing my feelings if it just will cause upset to people who feel the need to state the obvious like “you need help” or to “just go back to work”. You would say why care what people think but I know people miss you too and it is heartbreaking for a lot of people that care. I just don’t know how many times to say I need time. I try to be honest. I try to really say it is horrible and miserable and I don’t see a way through, and I don’t think people know what to do with that. Being bereaved isn’t a problem to be fixed.  I just don’t know what I am doing without you. I have lost my lighthouse. Everything is dark and rocky and dangerous. And it is night again and time stops at night and the thoughts and questions like to spiral at night. Turtles all the way down.

January 12, 2025 (I had no idea what day of the week it was)

Showered and brushed my teeth

Put on clean clothes

Washed a load of laundry. Folding it will be another day.

Fed the outside birds and watched them eat.

Talked to a friend about difficult things.

Made it back to bed before the crying started.

Nobody told me grief would feel so much like fear. – A Grief Observed C.S.Lewis

Nights are long and difficult. Nights are when time hangs heavy. I used to live for getting on my pjs and jumping into bed between the cool sheets and warm blanket and snuggling up next to David whether he came to bed right away or later. Fans on for noise and lights off for darkness. It was a favorite part of the day for me. Some months ago, I began to dread the nights. The darkness of the evening meant it was coming. I stopped feeling good about going to sleep and it became a thing of anxiety for me. I didn’t want the day to end. I wanted to just be up with him in the sunlight always. Nothing can hurt you in the sunlight. I started staying up late. He needed to get really sleepy and would fall asleep on the couch before he went to bed some nights. He was having some of the same anxiety when lying awake, so he wanted to be good and sleepy to make sure the bad thoughts stayed tamped down. I started this nightly thing where I lay my head on his chest and just listened to his heart beat and he would stroke my hair and sometimes I would cry and cry until his shirt was soaked with tears, and I would feel bad about it and apologize all over the place because I know it was hard for him and I just made things worse. The next night would likely be the same no matter how much I told myself I wasn’t going to make a scene and just go to bed like a normal person. A few times I managed to wait until I got to the bedroom to crumble but he always knew it was coming anyway. I know he didn’t know what to say so he just said it will be ok even when it isn’t. That is something he always said even before all of this. I just didn’t want to let him go for the day and I am sure this probably was smothering and overwhelming to him. I guess it was fear that kept me up later and later. Maybe I thought he wouldn’t wake up or maybe I just knew we were one day closer to some kind of end. Impending death has consumed my thoughts for a while now, and I had what I recently discovered was anticipatory grief. People (usually those that have never been through something like this) say live your day like it is your last. That is easier said and pretty impossible to do. Try it knowing your person isn’t getting better and hurts all the time and isn’t himself and cannot focus to do the things he loved doing and just feels crummy all the time and is too sick or compromised from treatments that aren’t even working to take a trip or day outing and all of this happening despite all the begging, pleading and bargaining with any higher power that may exist and be listening and then, after that, let me know how you get along staying positive and living your day to the fullest.

But nights, nights are even harder now. Alone. Knowing he won’t ever be here again with me. Ever. It is just me and my intrusive thoughts. The shoulda, woulda, coulda triplets of regret that dance on my chest like giant soul crushing ever transforming Heffalumps and Woozles and the dark hole that swallows me up and just leaves me falling into an abyss of sleeplessness watching the green numbers on the clock tick by at a snail’s pace forward until I hear my neighbor leaving for work or the school bus light flashing through the blinds and I know the daylight is just starting to show through the trees. Now though, I cannot move from bed because I know the new horrible thing is coming. The realization that happens every single morning. There won’t be any coffee to make or eggs to scramble or any pulling the quilt up around him so he can snuggle down and keep sleeping or good morning kiss, or afternoon kiss, or any kiss or affection at all or a text with hearts and I love yous. Ever. Again. And then the night will come again all too soon and the cycle continues…and I sound absolutely insane but sleeplessness for weeks on end now topped with a crushing weight of grief maybe does that to you too.

January 10, 2025

Whenever I asked David for advice or I was in the throws of some hand wringing situation, he always said “just concentrate on doing the next right thing and that is the only thing you have to do right now” This concept comes from psychiatrist Carl Yung and was adopted by the recovery community and co-dependents alike as a way to center awareness in times of inner trouble.  David practiced this in times of anxiety and depression and anytime he felt helpless to a situation. I was never as good as he was at doing it because my next question was always “what is the next right thing though?” he always patiently encouraged me to figure it out. I know I was (am) exasperating but he never ever showed a moment of irritation with me. It is sound advice and I keep hearing him say it to me over and over each time I find myself sitting here in tears begging “David, what do I do? How do I keep going without you?”

David and I never got around to seeing the movie Frozen 2 but as I was remembering the origin of this phrase I stumbled across a song from that movie called The Next Right Thing. Reading the lyrics just now, I have to wonder how it is that I am just seeing this for the first time right now. I thought obviously these words were written by someone who has been through a grief like this and a quick search confirmed that.

David was big on saying no matter how you felt, get up and shower. Even if you could not manage to do anything else after that. He preached this over and over to himself, me, and SL through various times in our lives. More recently, on days when he was weak and did not feel like getting off the couch, I would encourage him to do as he told us and he eventually would because he was smart enough to follow his own advice. Some days he didn’t have the energy to shower until 9pm but he never gave up on himself and trying to do the next right thing.

Today, I am in a struggle to move. I was awake until the light broke this morning. I don’ t have any direction from “the only star that guided me”. I am drifting, so when I asked him what to do. This is what came back to me today. So, I got up and fed the cats. Then I took a shower. So far, that is it for today. David would say that is plenty for now.  

The Next Right Thing

I’ve seen dark before
But not like this
This is cold
This is empty
This is numb
The life I knew is over
The lights are out
Hello, darkness
I’m ready to succumb

I follow you around
I always have
But you’ve gone to a place I cannot find
This grief has a gravity
It pulls me down
But a tiny voice whispers in my mind
“You are lost, hope is gone
But you must go on
And do the next right thing”

Can there be a day beyond this night?
I don’t know anymore what is true
I can’t find my direction, I’m all alone
The only star that guided me was you
How to rise from the floor
When it’s not you I’m rising for?
Just do the next right thing
Take a step, step again
It is all that I can to do
The next right thing

I won’t look too far ahead
It’s too much for me to take
But break it down to this next breath
This next step
This next choice is one that I can make

So I’ll walk through this night
Stumbling blindly toward the light
And do the next right thing
And with the dawn, what comes then
When it’s clear that everything will never be the same again?
Then I’ll make the choice
To hear that voice
And do the next right thing

Songwriters: Kristen Anderson-Lopez / Robert Lopez

January 9, 2025

What do I do when I have a gazillion things I want and need to tell David all throughout the day because that is what we did. We talked about everything and nothing. All day long.

What do I do when I miss him so much, I find it difficult to breathe at times and I have a pain in my stomach and my chest that has not gone away since he died. And it feels like what is left of my heart will beat right out of my chest.

What do I do when I cannot remember the last time I ate or took my meds because I lose time throughout the day and the days go from early morning to horrible darkness in about ten minutes.

What do I do when I have been his constant caretaker for 18 months and personal assistant for much longer than that and now there are no appointments to remember, or prescriptions to pick up or pill boxes to fill, or breakfast to cook, or feet and backs to rub, or faces to kiss or encouragement to give or clothes to wash.

What do I do when he knew I had a weird, unnatural intimidation of gas stations and pumping gas and he always tried to do that so I didn’t have to do it alone.

What do I do when I am so lonely for him it hurts and people keep reaching out to me but I do not want to even answer the phone or texts because they are not him and cannot fill that void and they cannot possibly understand. Especially the ones with husbands and wives.

What do I do when I realize I will never receive another text from him or get a funny reel on Instagram, or hear him laugh or hear his voice.

What do I do when there is no one to touch. To feel close to anymore. No one that wants me and knows me and loves me in those ways without any conditions or expectations or judgement.

What do I do if I never see another face or heart in random things because I haven’t since he died and maybe I will never see anything clearly again without him in the world.

What do I do when my car needs to be repaired or something in the house breaks and the person that did those repairs is no longer here to fix them and the people I ask aren’t able to help me or they just say call someone and that is something I have never had to do and don’t even know what to ask for or if I am getting taken advantage of.

What do I do when people think I am so strong and took care of him but really he also took care of me in a lot of ways for a long time that no one understands.

What do I do when I will eventually drive thru the new round about at the five way stop that he was so interested to see and wont ever get to see and so many other things like that he took an interest in.

What do I do when I cannot get out of bed and I feel paralyzed every morning because it just happens all over again day after day.

What do I do when I lay here and sleep will not come because he isn’t here and never will be again.

What do I do when I have regrets of things I should have done or said differently years ago and all the intrusive thoughts come for me in the night.

What do I do when I beg to not wake up and I still find myself starting over every day.

What do I do in those horrible multiple moments that happen every single day when I realize oh yeah…he’s gone.

What do I do when I open social media out of loneliness and cannot get past the first picture of some smiling family or people in love and I just have to close the laptop and sit with being that person.

What do I do when no one cares to get a text when I am headed home and I won’t see that little heart pop up next to my text when I said I was coming home. Or that little heart that would pop up on anything I said basically. Or those three dots that made me excited to see what he was sending every time he was writing something or simply just be glad I was home.

What do I do with all the things in the house that are his that make this house our home that I see every second of the day.

What do I do when we have Instagram accounts we both follow and enjoy watching together and talking about and I see his name on these he has liked and that just stopped and now I find it incredibly painful to watch our favorite accounts without him.

What do I do when I don’t want to ever have to go back to work because I may get fired because I don’t feel like I will ever be able to mentally be engaged because I have been altered as a person. I am no longer the same and won’t be an asset anymore in any job.

What do I do when friends get irritated because I don’t respond to them and they eventually stop texting or leaving messages and I don’t even feel guilty about it now because I am numb to everything except this grief but maybe one day I will need a friend or maybe I won’t and that will be even sadder.

What do I do when I cannot explain these feelings to someone who has not lost a significant other or person on this level and in this way.

What do I do when I feel so badly for our cats that I know miss him so much that it hurts me to see them and he wanted another dog but knew the timing wasn’t right and now he wil never have one to show an incredible amount of love to again.

What do I do when I try to make necessary phone calls to cancel medical insurance or deal with presenting death certificates to do the things I will have to do to remove his name from things and the people on the other end of the phone are cold and even rude and all I can do is cry when I hang up because they don’t understand or even care to.

What do I do when I have to remove him as my emergency contact and beneficiary, and it feels like losing him all over again.

What do I do when I cannot listen to any music or watch any TV because everything is something we shared and it brings me to my knees to think about doing something like that without him.

What do I do when I am driving along and the tears come hard and fast and I can hardly see and there are no windshield wipers for my eyes.

What do I do when I cannot have a conversation without the tears coming and someone looking at me like I am insane because they don’t understand this level of pain or care to.

What do I do when there use to be so much laughter and now there is silence.

What do I do when I am lonely for the rest of my life.

What do I do when I don’t want to leave the house out of fear.

What do I do when I begged him for many months to please write and leave me and SL  things to read and I would ask if he had and he would say no but he would and I know he didn’t get a chance because his got sick and died so fast and I am too afraid to open his laptop and not find anything there and that will be the end. And his mom explained that he would not have been able to exist in the two places in time. Either he had to be doing treatment and things to get better or he would have to give up and write me things for after he was gone. And I understand that he would have felt exactly that but it doesn’t make the longing go away of wanting some comforting words from him I can read over and over to know how he felt because one of my toxic traits is I need reassurance. His reassurance.\

What do I do when these things on this list keep coming faster and faster and I think what’s the point of any of it because there is nothing for me now.

What do I do when I have never eaten anywhere alone ever in my life or seen a movie without him or gone on a trip without him.

What do I do when people say I have to keep going but they still have their person alive and well and have a reason to believe that and someone to come home to.

What do I do when vacations are over because that was our thing and now he isn’t here to do those things with anymore.

What do I do when people say I am so strong but I know that isn’t true because I am thinking I cannot go on another day when I am just trying to make it hour by hour at this point.

What do I do when there is no one there for me in the ways he was. To never be wanted or held or hugged tightly again.

What do I do when I feel all this but I also know I am still in a bit of shock and disbelief and the real grief hasn’t hit me yet and I don’t know when or where I will be when it does.

What do I do when there is nothing else to do.

January 9, 2024

Signs are everywhere telling us where to go or what not to do. People say there are also signs sent to us from loved ones that have transitioned to that other plane. Some say God sends signs and they are called God Winks. I Googled exactly what that meant and found God Wink (plural God Winks) An event or personal experience, often identified as coincidence, so astonishing that it is seen as a sign of  divine intervention especially when perceived as the answer to a prayer.

I have never believed in coincidences. It is too convenient of an explanation for a universe as complex as ours.

While in the hospital one day, I asked David if he thought it was possible that he may be able to find me and watch over me and help me with things. Help me to know what to do and if so, how would I know for sure it was him guiding me? He said of course he would and that he thought I would just know. He said if possible, he would be sure to do something so that I would know it was him. This got me thinking about these signs sent from beyond. Are they from God or from your loved one or are we just desperately more in tune to seeing things we want to see in relation to a loss or prayer request?

Anyway, a day or two after David passed away, SL and Adam were in Walmart looking at Valentine stuff when she saw a coffee mug. She instantly recognized it as a character on the animated show Bluey which David loved to watch. This mug was in the likeness of Bluey’s sister Bingo, and she was holding a SIGN that read “I’LL ALWAYS BE HERE FOR YOU”. She sent me the picture and I was stunned. It had to be from David. Didn’t? I mean, it was a sign holding a sign?! She didn’t leave with it, but thinking about it that night, she went back for it the next day. Incidentally, David collected coffee mugs and we have so many they are in cabinets and shelves and bookcases. So, today, they were back in Walmart (Side note: Adam, being from England where they don’t really have shops like that, loves Walmart and try as we might to persuade him otherwise, he will not be deterred on his quest to visit as many Walmart’s as possible). So, they were just messing around killing time and they happen upon this junky clearance aisle and they spot a Christmas ornament of The Dude. It was just placed in there among random items and there was not another one around. She sent me the picture, and again, I was stunned. I said get it. Again, this is too coincidental to be coincidental right? I mean, that isn’t a current movie. It was from March 1998.

So, I asked David if it was from him. I didn’t feel a response. I asked about my sign because it has been 7 days and I haven’t seen one yet. Or maybe I am not open to it because I am blinded by grief?

I posted the picture on FB in attempt to share things as promised and many people seemed to think it was one of these winks or signs. I had an old friend that has also experienced a great loss, send me a link to a book that attempts to explain these kinds of signs from the universe. I went ahead and got a copy for the Kindle. I am looking forward to reading it as soon as I can focus on anything other than being mired in this misery of missing him so much. Simple tasks are difficult.  

January 7, 2025

Well David, even cheering from heaven, you and the big guy couldn’t make them Falcons win on Sunday. But it was at least close and as you have said for the past seven years since we last had a playoff shot, there is always next year.

I bet you didn’t know that David’s first job was a mail carrier and he sucked at it. 

Before the schools were consolidated here in Upson County, every year, a new batch of kids from all of the county’s elementary schools came together to start 6^th grade at Worthy Middle School. In 1986, a little girl from Thurston Elementary met a little boy from Rock Hill Elementary and began something indescribable that would span decades.

But first, let me back up, Among all these kids were these three identical blond haired blue eyed little boys from Yatesville Elementary School that caused many of the 6^th grade girls to swoon. They were the Gassett Triplets and they were nothing short of miraculous to young 10 & 11 year old kids who had never experienced this phenomenon before. I also found myself intrigued by these little characters that people tried their hardest to differentiate from one another, but I never seemed to have that problem. They also had a cousin. His hair and eyes were brown and his name was David. David and I became friends right away and as my curiosity grew in the direction of his cousins, I asked him one day to deliver a “do you like me yes or no” note of sorts to one of them. This continued for a while until, like kids often do, they get bored and move on to the next more interesting prospect. It wasn’t until years later that truths were divulged about this particular year in our lives. You see…David liked that new little girl friend he had made from Thurston Elementary School. He LIKED  liked her and this is when he decided to throw away any chance he would ever have as an honest and reliable mail carrier. David always read the notes and he admitted to seldom delivering them. He purposely “forgot” they were in his pocket and instead of bringing them back the next day, he just simply burned the evidence. See…David always knew what he wanted and while I could never say the same for myself, it was ok, because David always knew what was best for me too and he felt what was best for me… was him.

Through middle school our friendship grew. We shared the same classes except when he had to go to his “gifted classes” because he was… well…GIFTED. This was the smartest person I have ever met. Things he thought and said would stupefy me quite often including right up until days before he left us even when he was unable to speak. Those are stories for another day.

All these years, David has claimed to have loved me from the start. We played the I love you more game until he took his last breath on Thursday. Sure, he had other crushes but he stayed true to his one goal. To be my True North. My compass. My lighthouse. My guardian, my greatest supporter and bestest of friends. The one who love me more.  

Time moved on and we reached high school and everyone else knew before we did that we belonged together. Even we could not defend the “we are just friends” mantra for very long. We were two weird and awkward kids that never felt they belonged anyplace except when we were with each other. We talked on the phone every single free moment. When we could drive, we spent every moment we could together. He continued to amaze me and wow me and infuriate me because I would never be smart like him. We was always right and not in a smug arrogant way. But in that he JUST WAS. I never thought I would be able to hang on to him once someone else realized his incredibleness. Little did I know, he wasn’t looking in any other direction because he had found his person too. I would leave my job after my shift was over at Kmart and he would be waiting for me in the parking lot. My stomach always a flutter to see him. That too continued up until the final days.

When we graduated, we decided to stay at home and go to college while working full time. I drove to Columbus every evening and he drove to Marietta. We did this for 5 years. Then one day when he got down on one knee on a regular July afternoon and in the least romantical way said “here”. I looked down to see a ring he had designed and had commissioned made by his family’s closest friend who also happened to be a jeweler. Accounts on what happened next may differ, but he would tell you I was disappointed over the lack of romance. He would also tell you he was so incredibly excited he could not wait one moment longer. He had got the finished creation and had polished it so much his mom worried he would polish the stones right out of it. So that was our big romantical moment that would become a running joke with us from then on when we had something important to say to each other we would just simply say “here”. HERE IT IS. HERE IT GOES. HERE WE ARE. HERE WE GO. HERE I GO.

We had the wedding, graduated college, I quit my job with a guaranteed salary, and we started a pet sitting business all within a few months. Love is fun but young love is stupid. Like many young people starting out, we struggled financially but we had a good time doing it. David was not a worrier, and I worried enough for the both of us, so it balanced out. He continued to support me and our ideas and our dreams and our goals without fail. He never said no. He always understood me. He always made me feel like I belonged someplace, to someone, and he never made me feel anything but loved. He gave the biggest, strongest bear hugs that told me nothing in this world mattered outside of us. It was always just him and me.

On a cold March day in 2005, David became True North to another little girl. Sarah-Lauren was born 4 weeks premature and I was rushed into surgery due to complications of preeclampsia with congestive heart failure. David was told to wait outside and when they rushed out with a little tiny bundle on the way to the NICU, he was left torn between going with her and waiting for me. The nurses would not meet his eye. They came and went without a look and he feared the worst until one came to tell him I was headed to recovery but they were unable to wake me. For the next several hours, he sat next to me holding my hand while the nurses tried to bring me out of the anesthesia. When he ever recounted that story, he had tears in his eyes. Recently, while he was in the hospital, I came back from making a phone call to him telling some of his nurses about it. All were in tears. He had a way of effecting people like that and also a way of having several nurses in his room at one time, but I digress.

David started to burn out in his job at Quad and getting relieved from that position was the best thing that ever happened to him. He quickly found his true passion and that was teaching computer classes to adults. He got a job as an independent contractor working with the Economic Development Division at Southern Crescent Technical College.  He taught beginner computer classes, and every level of Microsoft Office and Windows Operating Systems. He customized training for business and industry and taught just about every person that worked in a business in a five county radius how to create and actually use an Excel spreadsheet. He kept a copy of every class evaluation he ever got and I maybe read a handful of negative comments over the course of 14 years. Those comments being “the room is too cold” and “I wanted more time with the instructor”.  He loved teaching these classes and I told him I believed he would have done it for free. He thought the job was great especially because it left him able to take Sarah-Lauren to school and pick her up each day. Which was another passion of his. Spending time with his daughter. He loved her big. Everyday. Every moment. With out fail. Both of them singing Hank Williams Jr., Metallica, and Taylor Swift on the way to and from school. Incidentally, David was a Taylor Swift fan. He said the music made him feel happy and he didn’t look much further into it than that. After listening to his playlists a few times of people like Taylor Swift, Brittany Spears, Katy Perry, I said what it is with these women? He said I like my women a little crazy. I said ok. Then…WAIT!!! WHAT?!?!

Fast forward, Sarah-Lauren grows up and goes to college and we are looking at the next phase… that of empty nesters and finding each other again and growing old together. Then the diagnosis came that flipped us upside down and left us there. This is where the fairy tale grows dark. If you followed our cancer blog you know how the last 18 months has been. I will spare the recounting of the heartbreak and the inevitable that led us here today.

So now, I will tell you something he wanted to say. Something he wants you to pay close attention to. Get checked. Get every preventative check you can get as soon as you can get it. Don’t be afraid. Assume it is something to worry about. Don’t let fear or embarrassment or shame rob you of precious time.

I have been angry for some time, and I am guessing that will continue for a while. This story. Our story, wasn’t supposed to end so abruptly. Things like this didn’t happen to us. He wasn’t supposed to suffer so much pain. I was not meant to continue without him. I am rudderless. I am without my True North. I am not prepared. I am not ready. I am not willing but several weeks ago we were talking, and I was lamenting over not being able to go on without him. He said he had one request and he asked me to keep going. Keep going so I can tell people about him. He said I could keep him alive in that way.  I know that what he was actually doing was trying to keep ME alive. So, I will try to do that with the blog he started a year ago on January of last year. He more than deserves that. I will try to talk about him and if you see me out in the wild and I have a story or see some random post on social media about David, then you will know what I am doing. I am trying to keep him and me alive. Over these past months of beginning to learn to navigate my way around without so much of his guidance, I adopted the WHAT WOULD DAVID SAY way of life. We will see how it goes.

I asked him not long ago if he had any regrets, and he said he was sorry and he felt he let Sarah-Lauren and me down by not going to the doctor sooner when the symptoms appeared. He could not have known that this diabolical cancer had been already growing for 4 years before it showed the first symptoms. He could not have known it had already spread to his liver and especially at the age of 44 when testing was not recommended until the age of 50. Now, testing has moved to age 45. I guess that is something but it wasn’t enough for him. For us.  I told him to never apologize for that again. He did every test, procedure and treatment that was made available to him and sacrificed his body for more incremental time with us.

One of David’s favorite movies was The Big Lebowski. He watched this movie so many times and over the years he would explain the meaning to me with such enthusiasm. It was never clearer that this is how he lived and also how he approached this cancer thing than when I heard him explaining the meaning to the oncology nurses and then to his Interventional Radiologist who incidentally shared his love for the movie. The way David always explained the meaning was the guy in the movie “The Dude” constantly goes against the way things are supposed to be. He does all the wrong things and constantly rails against the flow, and every time, things go south for him. A stranger in the movie attempts to explain this to The Dude and he cannot be bothered to hear him because he is too busy fighting the inevitable. Once he finally gives up and gives in to the way things are, things start to straighten out and he learns the valuable lesson of just what “The Dude Abides” really means. Just relax. Enjoy the simple pleasures of life. Be tolerant of others. Be calm and open-minded in the face of adversity and encourage others to do the same. This is what David did until his last breath on Friday. This is the person I will admire and love until my last breath.

He didn’t like for me to call him brave. He thought it was silly and he was just doing what anyone else would do. But he wasn’t just anyone else, was he?. He was my everything. IS my everything. Which is why when they told us last week there was nothing more to be done, and he said he wanted to go home, I brought him home as fast as I could drive. I held his hand, told him how amazing he was and how much I loved him.  I kissed his face, his lips, his hands. I fed him when he couldn’t hold the spoon. Crushed his medication in applesauce when he started having trouble swallowing. Lifted him when he was too weak to get up. I bathed him and wiped his face with a cool cloth and then administered the scary pain medication every hour until he took his last breath.

I know some of you may have wanted to speak to us before the funeral and maybe some of you thought you got to avoid it by just slipping in for the service. Either way, here is what we are going to do. After the service, a happy sad little song will play and our little family will walk out. We will be in the lobby if anyone still wants to speak to us. We also won’t hold it against you if you need to just walk right on out and back to your lives. We know how this goes. We understand.

So with that, I will leave you with the one word he said to me that has so much more meaning now and changed the trajectory of my life forever, “HERE”

Mr. William David Gassett age 49, passed away on January 3, 2025, at his residence. 

Memorial services for Mr. Gassett will be held on Tuesday, January 7, 2025, at 2:00 PM, in the chapel of Fletcher-Day Funeral Home. Rev. Ted Kandler will officiate. The family will receive friends on Tuesday from 1:00 PM until the funeral hour at the funeral home.

David was born on March 17, 1975, in Upson County to the late Lawrence Gassett and Theresa Tobin Gassett. He was a 1993 graduate of the first graduating class of Upson-Lee High School. David went to work at Quad Graphics, Inc. during high school and worked there in the Facilities Department for 16 years. He also attended Gordon State College and Southern Polytechnic State University.

More recently, David was an independent contract instructor for Southern Crescent Technical College’s Economic Development Division. In this role, David found his real passion for teaching everything from beginner computer courses to customized training for business and industry. David and his wife have co-owned and operated Fur, Feathers, and Fins Pet Care in Thomaston for over 24 years.

David was a die-hard fan of the Atlanta Falcons football team. Win or lose, he was loyal to his team. He was an avid reader, Lego enthusiast, and an all-around Mr. Fix It.

David will be profoundly missed by his wife and soul mate, DeeGee Brown Gassett of Thomaston, his daughter, Sarah-Lauren Gassett of Thomaston, his future son in law, Adam Sheppard of Birmingham, England, and his mother, Theresa Gassett of Thomaston.

In lieu of flowers, memorial donations can be made to the pet charity of your choice or to Georgia Public Broadcasting https://www.gpb.org/support.

Fletcher-Day Funeral Home of Thomaston is in charge of all arrangements. Condolences and remembrances may be expressed at www.fletcherdayfuneralhome.com.

January 2, 2025

The first dose of morphine and Ativan was given, and after an hour, it was clear it had not had much effect. JP arrived and another dose was given. We watched him closely for another hour while the grunting and discomfort and pain continued. JP took a long look at me like she needed to say something, so I told her just to tell me. She said he was declining rapidly because he was in active transition now, he would probably go in the next 24 hours. She said this was going to be a hard day for me. She had a few options to present to the doctor and she stepped outside to make the call. I held David’s hand and just sat and watched him. He just was not settled. Not at peace.  I sat and thought how quickly this was all happening. When JP returned, she said the doctor decided based on what we were seeing and how quickly it seemed to be progressing that I would need to start dosing every hour to give him as much comfort and relief as we could. JP asked several times if I would have help with the dosing. This would be hard to do emotionally. I told her I could do it. She quickly put in an order to get a hospital bed stat but when she tried to reposition him in the chair it clearly caused him tremendous pain, so we decided we would not be able to move him. JP and our friend got him better seated in chair and placed a pillow behind his head that seemed to help. Now it was time for our friend and for JP to leave. JP hugged me so tight and it reminded me of how David would hold on when he hugged me and never be the first one to let go. I told her she gave the best hugs.  I found myself in the room with him. Just him and me. Like it always has been. I started talking to him and he opened his eyes. By now, his eyes were pretty fixed and his stare was a sort of vacant stare but when I asked him to look at me, he made every effort to turn his head. I knew he heard and understood what I was telling him about how I was going to have to start the morphine. This was another part about hospice I was clearly naive about. When you chose home hospice, there are no round the clock nurses at your service. It is you and you alone. Not that I was deceived in any way. They were very clear from the start what home hospice would be. It was just my over fantasized idea in my own head about what this meant. I started the dosing and each time I kissed him and told him I loved him and what I was doing. Every time he opened his mouth for me to put it in the back of his cheek. I am certain he was saying let’s do this. I sat vigil with him for the next nine hours dosing and listening and watching and second guessing and feeling utterly lonely. His mom and SL & Adam were there but inevitably it ended up being me that administered every single dose. I have questioned that ever since, but I know he was in pain and I know this is what he wanted and I know this is what I agreed to do. He was confident I was strong enough to do it and that is why he wanted to come home. I was determined to hold his hand until he got to the other side. About halfway through the afternoon, his breathing changed and the grunting and noises stopped. He began to look like he was starting to rest as he had done in previous days. I was listening for apnea type breathing to start to know when the time was closer. Instead, he just slept there but still seemed to hear me when I spoke to him and opened his mouth each time I was ready with the morphine and Ativan. I am sure he was ready. I had been telling him all along it was ok to go even though I didn’t feel that at all. I had even told him as we were getting ready to leave Emory on Saturday to know he could go now and I would be right there beside him until I couldn’t be any longer. I don’t think he liked hearing that particularly, but I felt it was important to say while he could still see and hear me.

So, I sat watching him and began to think how I just didn’t know at the time when that last conversation was going to be. I didn’t know when I was hearing him speak for the last time or the last kiss or touch or hug.  I didn’t know the groceries I got for him to eat when we got home would be the last or that the last time he ate his favorite food was the last time or the last time he stretched out on the couch on Sunday afternoon to watch the Falcons play was the last. You don’t know which moments those are.

I sat with my stomach in my throat. Realizing I no longer cared about anything. Already nothing mattered to me anymore.  I started thinking about his obituary and how soon all of those things would need to be done. Much, much sooner than I had initially thought when the oncologists told us he had weeks. I now know that surely was just an over guesstimation or else it was difficult to really determine. At any rate, I had told him months ago that I did not plan to have a service. That I would not be able to bear it. He said it was up to me but I felt maybe he would know just how much he meant if I was able to pull myself together and put my own pain aside long enough to make it work to honor him. So, watching him sleep, I started to put together some details in my mind. Always having to be the too prepared one. The one not caught off guard. The one that has been prepared for everything except this. The one that doesn’t know how to move forward now.

Around 10:28, roughly 9 hours after the dosing started, he opened his beautiful brown eyes then almost as quickly, they started to close again and I just knew. I told his mother he was going and asked her to get SL. We were all there with him when he took his last breath which was peaceful in the end. I lay my head on his chest as I have done so many times and listened to his heart beat fade slowly away until I could no longer hear anything at all. He just looked like he was sleeping. His mom said some prayers and we spent a little time talking to him and about him until it was time to call JP. She had told me to call her no matter what time it was, so I did and she came and listened to him for a long time before pronouncing. Since it was after midnight by now, his official date of death was January 3. She completed the paperwork, hugged me so tightly I didn’t want her to let go, and then she called the funeral home. When the guys arrived to take him from the house for the last time, I knew it would be another difficult moment. I watched as he went down the steps of the home we bought and lived in and worked in and played in and had paid off so that it was all ours and where we made a nice little family life for ourselves. I watched as the life we shared, our love, a part of my own soul was rolled away.

December 30, 2024-January 1, 2025

The start of the week found David struggling a little to speak. He was sleepy and it was difficult for him to stay awake. On Monday, he ate a really good breakfast although he had some trouble holding the fork and the cup. He was able to tell me what he wanted and ate nearly every bit. He was still having difficulty moving around due to the ascites in his abdomen and also the edema in his legs and feet. I was able to help steady him and we had borrowed a rolly walker that was helping. We met his hospice nurse JP on Monday, and per David’s request, we also had a visit from the parish priest. David received the anointing of the sick as well as the Viaticum. This is something he asked to do. It was once referred to as “the last rites”. After the visit, I asked him if he felt at peace. He said yes. I am glad I made the call. His nurse, JP, advised to start watching the intake of food and liquid and to note how much is was sleeping. Intake was expected to decrease and sleep would increase. He was able to communicate but he was very tired after the visits, and I helped him to bed. It started to become increasingly difficult to help him up to the bathroom and back to bed by myself, so I had to wake up SL or her fiancée Adam to help. Each day brought different challenges and functions that seemed to be waning. He developed some worsening motor skill issues that I attributed to the hepatic encephalopathy. I was having to hold the fork or spoon for him and I could tell this was terribly depressing for him. I was having to go into the bathroom with him because he had a fall the night before. I know this was something he hated also and I could see it in his eyes. He still understood every word I said and would indicate the acknowledgment in some nonverbal way by sounds or squeezing our hand. On one of these days, he grimaced and I asked him what was wrong. He said “hurt”. I asked where. He said “pride”. This was heartbreaking and I tried reassuring him that no one in the house minded helping him and no one thought any less of him. I told him over and over with my arms around him lifting or supporting him, that I knew he would be doing the exact same thing and then some for me. His nurse and I communicated each day. By Tuesday evening and then Wednesday, David was having trouble drinking through the straw and also swallowing his meds. I discontinued all meds except the main medication and was able to get it down in apple sauce. My aunt loaned us a recliner lift chair, and with help, he was able to get to the living room and sit in the chair and look out of the windows and look at the Christmas tree. I feel like this did wonders for his spirit. He always wanted a recliner but over the years as we looked and looked at them, he could never commit. Either they were too large and puffy or too narrow and stiff. He remarked once that he was also sort of a couch man because he liked being able to stretch out or sit alongside me.  The cats would pass in and out  and a couple that usually sit with him stayed in the chair with him for a little while. I have read many times that allowing the pets to be a part of the passing helps them to understand what is happening. It was hard to watch though knowing he would most likely be gone soon. I told SL that they know way more than we do about things like this and know better how to cope. He seemed to like the cat snuggling and slept most of Tuesday and Wednesday pretty peacefully. I lay beside him in bed on Tuesday evening listening to the fireworks and rang in the New Year cherishing the sound of his breathing. I wished him a Happy New Year the next morning and he acknowledged he knew what I said. By Wednesday evening, he had eaten very little and had not been to the bathroom all day. His speech had stopped but he surprised me by taking my hand and kissing it as I was getting him comfy in the chair. He always knew I was a sucker for that and I just know he was doing it because it meant so much. Up until the final day, he would pucker up his lips any time I leaned close to him. It was small little things but these things meant something huge to me since he had been unable to really communicate clearly for a few says. I know what he was saying. I was constantly saying I loved him and it was ok to go. I told him he didn’t have to hold on and that we would be ok. A lie of course but something you sort of have to do I guess. Knowing all along though that David Gassett would let go when David Gassett let go and not one moment before. He would have had his reasons. I had a difficult time getting the pain medicine down by Wednesday night and knew I could not crush the extended release medication. I had to switch to the as needed meds and crush them in an attempt to get those in his system. I know he wasn’t getting all the dose this way but I didn’t have another option. I was unable to give the med for the brain swelling because it was too large and could not be crushed. This is certainly one of the many difficult parts about hospice. In the early morning hours of Thursday as I was laying awake next to him, I heard his breathing change to grunting noises as if he was trying to tell me something or attempt to change positions. I tried to calm him and let him know I was there by his side. I thought maybe he needed to sit upright or maybe try the bathroom in an attempt to combat the stiffness of laying so straight. By then though, he was so weak there was no way he could help me with the lifting and I had to have Adam’s help. We got him to the bathroom and then struggled to get him back in bed. I lay next to him listening to the rapid breathing and grunting noises just pleading with God or the universe to spare him any more suffering. I just didn’t want him to experience this final push. I immediately felt selfish for feeling so tired and weary and weak myself. He was worth staying up and comforting and whatever solace I could offer. By the time the sun came up on Thursday morning, it was clear he was in some sort of distress over whatever was causing him discomfort. Pretty good guess that now all the fluid seeping from his liver was really starting to press hard on his organs. I asked Adam and SL to help move him to the chair in the living room so he could stretch out in a different way. Once in the chair though, the grunting and noises became louder and more frequent. His breathing was deeper and harder. Again, I had trouble getting the pain medication to go down. I knew I could have called the nurse on call but I was pretty sure what was happening. I waiting a little longer and I called the his nurse JP and she told me she would be able to come right over after lunch. While we waited, the sounds just got more frequent and louder, so I called a dear friend of ours who happens to work at the same hospice and was home from work to come over and just take a look at him just to let me know what was happening. Me. Forever needing to know what was happening so I could understand. As if things would be ok if I just could understand. Things like this have made me miss my dad so so much. David is so much like him and they were always the ones that could explain calmly and succinctly what was going on. This friend of ours came right away, and after some sitting with him and observing and discussing the last time he had the Oxy, she suggested it was time for the morphine from the little box the nurses brought by on Sunday. I viewed this box as the final box. The one you went to when things were closing in and you needed the heavier things.  I was instantly afraid of this little white box with the dosing written on it when they went through it with me. There was nothing much in it to be scared of except that tiny bottle of morphine. I know enough about cancer’s end to know once that starts, there is no intent of coming back.

December 29, 2024

We saw numerous doctors and consultants and heads of departments. David was poked and prodded and drained and filled with fluids. We survived may sleepless nights and days. Three Emory oncologists reviewed his entire record including digging into the initial and subsequent genetic testing. David’s liver is failing with “enumerable tumors”. I grabbed his hand. “With the progression, there is nothing more that can be done.” I asked how long. “Weeks but hard to know”. When they said the words I lost my footing. The NP that was with them and one of the oncologists held on to me and to David’s shoulder. When they left, I vomited so violently I could not control my bladder. My nose began to bleed. He looked numb. I sobbed and we held on to each other and as weak as he is, he held me tight. I asked if we had done the right things. If we had done what we should have. They said we did all the things as they would have instructed. Still, second guessing tries to creep in. Even with this recent bout of illness, Emory did the exact same things our primary Dr. W did here in town. The exact same way. We had hoped someone would have different experience and be able to make him feel more like himself before going into this phase. After the scan in November, we knew the liver would start to struggle. The g-force acceleration at which this happened is head spinning.

I brought him home last night where he wants to be. Hospice started today.

He is the bravest fighter I have ever known. He will continue to fight until his last breath but seems ready to be at peace also. He slept good last night in our bed. He got himself up and down to the bathroom all during the night. I didn’t try to do too much to help unless he clearly needed it.

I know people are out there praying and thinking of us all. We just don’t seem to have the favor we wished we had. We don’t have the time we wished we had. We realize that we do have time many others don’t have and are grateful for that as much as we can be right now.

He has been my person since we were 14 years old. We are supposed to turn 50 together in the next couple of months. We wanted to take a big trip out west just stopping where we wanted to stop seeing animals at Yellowstone and landscapes across the Great Plains moving down to canyons so grand. I cannot think now about what it will look like after. Of all the little things and the big, huge monumental things that are starting to creep into my mind that I will no longer experience or do or see or feel. I will take this next part moment by moment. But, already, nothing matters to me anymore. Life already feels empty, and it is dimming with every stumble. With every glazed-over look. With every struggle to answer or respond. With every sigh of pain. With every grimace and every non-verbal cue that he is agitated with how he feels. With every struggle to walk on legs and feet so horribly swollen with pitted edema that even the great Emory doctors couldn’t help. With the distended abdomen so full of fluid even after a paracentesis that he cannot lay comfortably and constantly keeps me at a distance from getting any of those great big bear hugs that says nothing in the world can hurt me as long as he is here.

He is the best dad to the best daughter struggling with her ability to no longer mask her emotions as she always has because of the enormity of this horrible, unfair, unexplainable, unacceptable thing. He is a good son. He is a good everything. He is sweet and kind and funny and oh so damn intelligent. He is my best friend. On some level, we share the same soul.

I continue to struggle with being consumed with anger and bitterness but there will be time to deal with that later. He wants the Christmas Tree left up. He wants to be in his bed and not a hospital bed right now at home. He doesn’t want a lot of hospice help right now. So, right now, is for him and only him. For as long as that is. For as long as I can manage. He is worth every ounce of excruciating pain I am selfishly feeling when he is the one who has hurt with this for so long, for us. To sacrifice his body for a chance to have more time for us. He has given me every ounce of happiness and belongingness and unconditional love. I am the one that will need to remember his meds now and how much pain medication I can give him and to do it when he cannot ask and remember when I gave it last. I am the one to help him up and down and make sure he eats and drinks until he cannot eat or drink.

It should be me. He is stronger. He would know what to do right now. He would know how to do the things I needed. He would know the right things to say. He would know how to carry on.

From 12/20 to 12/24, David’s WBC continued to rise with one day seeing it decrease only slightly. His feet and legs continued to swell and Lasix and Aldactone were added to the broad spectrum antibiotics he was receiving. Dsvid continured to eat although he had no appetite and we walked around the halls as much as he could stand. We discussed needing a paracentesis to drain the ascites (fluid) in his abdomen as well as testing the fluid to see if this was causing the infection. Because of our good experience with Dr. K, David wanted an IR doctor to do the procedure and there is not an IR doctor in Thomaston.  We could get an appointment with Dr. K to have this done but the issue being David was inpatient at a different facility and not a candidate for discharge due to the high WBC. Because we also lack in resources for consults, we talked to Dr. W about a transfer. This had absolutely nothing to do with his ability or what he was doing. We just needed more specialization with these cancer effects than we could get at home. There were so many questions about why his WBC kept going so high despite all the antibiotics and why he was retaining fluid in his legs and feet despite the diuretics, and by Sunday, his eyes had started to turn yellow. The bilirubin in his blood was high so urine was also a very rusty color. There is really no doubt the liver is playing a big part in this nightmare. The kidneys though were holding strong. Dr. W worked really hard to find someplace to accept him. We are forever grateful for his determination to get him more help. We are so fortunate to have him in our community and on our side. On Christmas Eve, we got the transfer to Emory St. Joseph. I must admit having all his scans, doctors, procedures and everything in the Piedmont System and then them not accepting him as a patient at this critical time continues to be a sore spot for me. Almost a personal affront which I know is only business. Whatever business practice that is when your doctors are all in the system and they turn you down, but I decided to see this as the place we were supposed to be. Two non-cradle Catholics who lost their way a while ago now put on a path to this hospital on Christmas Eve night. A catholic hospital merged with a giant among medical facilities in the south.

The transfer in the ambulance was rough according to David, and I got there shortly after they got him in the room around 10:30pm. He looked pretty bad. Just exhausted and so tired. He was sweating and so weak trying so hard to sign a form when I walked in.  He said he had to pee the whole way and apparently you don’t get that option in an ambulance. We didn’t get any sleep the first night as everything was about getting set up, assesments, doctor orders coming in, vitals, and lab work, and registration people coming by at 2, 3, 4 in the morning.

December 20th ish 2024

Been up since Monday morning. Will have to update later tonight. No more steam left in the tank. The needle on the gauge broke off three days ago.

December 19, 20024

David slept most of the day but he did have a little bit of confusion and agitation today. His ammonia level is high and that can cause a number of things to happen including hepatic encephalopathy which would explain the confusion in his brain. While his liver numbers are not bad, his liver is struggling to do its job and fight the cancer that is overtaking it. He has an ultrasound today and if has enough ascites, he would need a paracentesis in order to give him some relief from the swelling in his abdomen. When we spoke to Dr. W this evening the results were still not back. There seems to be some issue getting reports here and we are definitely not use to that. Still running on no sleep and no nap.

Some December 18, 2024 and every early morning minute of December 19, 2024

We managed that shower but not in that fun couple way because that doesn’t exist anymore. Cancer takes everything. I say “we” because I looked as though I dove in head first clothes and all. I was able to go home for a short bit thanks to my step dad who came to sit with David in the afternoon. I sure am homesick and just going back for a couple of hours makes the cats wonder what in the world is happening. I try to explain what is going on and keep telling them I will be back (but not in a Terminator voice because they are Gen Z cats and haven’t seen that movie and wouldn’t get the reference). I realized today that Christmas is like just days away. I haven’t had a chance to buy any gifts except a few stocking things from Amazon. That makes me sad too. Cancer takes everything.

I got back to the hospital and was stopped by the nice lady in registration that we saw Monday. She asked how David was and said she had thought about him ever since. She asked if she could give me a hug and I said yes then I went on my way. I made sure to let David know someone asked about him. I got back in time to order David a custom dinner from the Café. They let you do that with meals and bring it to you in 45 minutes or less so says the menu. It is a neat idea, but he really has zero appetite, so, also, zero interest. Cancer takes everything.

I persuaded David to take a lap in the hall just to maybe get some circulation going and just move around. He reluctantly did it… civilly disobedient. Dr. W stopped by after our brutally long four minute hike up Everest and told him he was really glad to see him out in the hall walking. David said yes he felt he should do that as if he had not been pulled by his IV pole nearly kicking and screaming. We talked about chasing this mystery infection. He added two more different types of antibiotics for tonight and we all hope the WBC goes down and not up tomorrow. David has substantial swelling in his legs and feet and also the usual three basketballs in his belly. The legs and feet are from the fluids he is receiving but no one can tell me why the belly distention. There does not appear to be any ascites in the abdomen to warrant this. Liver and kidney labs are good and well in range.

His food came shortly after and we both noticed a little smile on his pizza so maybe that was something. He did like the corn. It was like an elementary school lunch. Pizza and whole kernel yellow corn. David was pretty agitated and antsy, so we tried to pass some time with some old Andy Griffith episodes. Even Barney couldn’t make him laugh today, so he dozed a little and then I left him for just a little bit to go give the cats dinner and make sure they were tucked in for the night (the kid is out of town on a trip).

When I got back, I had to enter through the ER because the other door was locked. We got settled in and dozed for about two hours before the train decided it didn’t need tracks and would just be laid back driving on the dirt road, swervin’ like George Jones. At 1:30 am he started to get very warm, so I asked for someone to take his temp. No one ever came. I called again and it was a while and he was at 100.8 by this time. That played second fiddle though because when I got him up to help him to the bathroom, the pillow under his IV arm was soaked along with his IV arm. Yep. Something was leaking. So I called someone and a couple nurses showed up and decided the IV line would need to be totally redone. David was less than thrilled about that. By this time, he had started to sweat so after they left, I got the little air machine and started cooling him down. I also wiped him down with cold washcloths and he soon was feeling better, but I knew the really bad soaking menopausal night sweat was coming. He needed to get up for the bathroom again and as he finished and washed his hads like 1876 times before, something hit the floor. I looked and it was the @$%$ IV needle with fluid squirting out of it. Then I thought blood and sure enough his arm was dripping with blood he doesn’t have to lose. It wasn’t a whole lot but with all the fluids he has been getting it seems pretty thinned out so I grabbed paper towels and called for someone to help. Another shortened story for interest sake and he had yet another IV line put in but in the opposite arm now. This one got properly wrapped to help keep it in place. The bed had to be moved and things rearranged to move the pole to the other side. I noticed someone who was in and out decided to put on the bed alarm even though he has been moving on his own back and forth to the bathroom with some assistance from me. So I asked if that could be turned off because it was getting anxious thinking he was trapped in the bed. With that potential crisis sorted, the tech came in for vitals and mentioned “he is warm” well no @*&%. David went back to the bathroom and I noticed the sheets were drenched in sweat. I called and asked for new sheets and someone came and made up the bed again. He was glad to have the dry sheets. By this time it was 4:15 am and when I got him back into bed, he basically passed out asleep with exhaustion. I feel like I already have the reputation of being that “one” that speaks up for him, so I don’t know if I made any friends tonight but it has had a different vibe than the previous days and nights. I bet we never saw the same nurse more than twice and that is weird because we usually just have the one. David slept sort of fitfully until just before 6 am when the lab came for blood. I noticed after she was already in process, she was taking it from his hand and I didn’t get a chance to warn her of the vasal vagal response he may have. He did ok though and I credit him being mostly asleep when she did it.  He slept another 15 minutes when they came to start more IVs. He doesn’t have any more fluids ordered right now so just the one bag. Another 40 minutes or so and then the new day nurse came in. That is when I know that first light of day is out there about to be peeking through the blinds and I give up sleeping in life every again. What animal sleeps a lot? Maybe I will come back as that in my next life. Cancer takes ev.er.eee thing.

Here’s hoping for lower WBC this morning and the possibility of hitting on something that will chase this mysterious infection out of here.  

December 18, 2024

I am not lying when I say I have no idea what day it is. Honestly. I just had to look at the calendar and still had to think to figure it out. David’s WBC is up for the third day in a row and we are still chasing this infection and still in the hospital. WBC now up to 23000 and he has a fever this morning. This is the first temp increase we have had since being here. He is still sweating profusely at random times and it is hard to pinpoint why other than an infection. When you have an infection WBC goes up but when on chemo it goes down which it has been doing and makes it hard to know if there is an infection. So now we know. On two antibiotics and starting him on a third but need to know what the infection is to know what antibiotic will properly treat it. Nothing growing in cultures so that’s good means no sepsis so far thankfully.

The two stool samples we got were C Diff negative.

David has been somewhat distressed this morning and wants to go home. I reminded him that this is not like the weeks before when we were sort of trapped in the hospital with all clear lab work. There is something actively going on and Dr. W said this morning he is thinking now that the C Diff is negative he still believes it is something that is still in the abdomen area.

David had two more units of blood over night so that makes a total of four since Monday. Hemoglobin almost 10 and still low but ok for now especially for him.

He slept better last night but was agitated this morning. I persuaded him to get in the chair instead of the bed and he feels a little better sitting there. He ate a little breakfast and tried to focus on watching a Gunsmoke episode on the laptop but fell asleep, so I turned it off. I have asked about getting his shower earlier today since it was a pretty big task after I came back yesterday afternoon. He was too tired and grouchy and I ended up with as much shower as he did. But it is 11:30 and I have asked again. They have to come and wrap his IV and unattach the heart monitors and we have a different crew today who seem to be busy doing other things. I think it has been one issue after another by the sound of the codes and beepings going on.

I did bring a little Christmas tree from home and a short strand of lights for the window ledge. I thought it would cheer him up a little but I don’t know it made much difference. It made for a better nightlight than the ones over the bed.

So we wait…on everything

About 20 minutes later David had soaked his sheets, pillow and hospital gown with sweat, left a rather noxious stool sample in the bathroom, and had one of his IVs blow out. He also started on the first unit of blood around 12:55am. And oddly enough, he started speaking plainly out of the clear blue sky talking like himself to me and to the nurses. I was like wait…you are speaking coherently. Then he went straight to sleep again. We have about an hour before the next assault and second unit of blood arrives. No sleep for vampires.

And these neat little air blowing machines they have around here are great. I need to roll this one right on home with me for the night sweats and hot flashes. Maybe just carry it around as a backpack. They blow cool or warm air through this almost dryer type hose and you can just put it inside the sheets with you or right up your shorts leg. I mean someone could if they were inclined. How handy would that be?

Also, the room is still too warm. I need someone to show me how to jump out the controls to these places that only allow you 3 degrees in either direction. Or simply just make you think you are adjusting it when it really is controlled by a short little maintenance thermostat hobgoblin on his computer or phone. Ask me how I know that?

Dr. W came in this evening to say David’s WBC was elevated much more so that the “normal” it was on Friday at Dr. B’s office. This could indicate infection. He ammonia level was elevated. This could indicate infection. His hemoglobin was 7 and his iron is low. Neither of us have received the scan results yet, but we are both expecting fluid collection and he and I both agreed the augmentin can cause C Diff and that was worth pursuing also. David has received a unit of iron and is working on IV antibiotics (vancomycin). The same one he got in Fayetteville. There could be several issues at play here in my opinion and the frustrating thing is they all have these same symptoms. David was a bit agitated this evening. He knows he is confused and in the hospital but wanted to know how we would be going home in the night. It is hard that he cannot fully understand and whatever is making him so disoriented and outside of himself is difficult to pin point right away. He is currently sleeping and sweating at the same time. Temp was 99 just now. The room as been hot and his nurse rolled in a air blower machine and it can blow cool or warm air. I have been using the hose on it to direct the air onto David. He says it is good but then gets irritated with it. So here goes another sleepless night watching him sleep and reading everything about everything on Google trying to diagnose him.

David’s mom came and stayed with him so I could go home and check on the cats and then grab some dinner. They didn’t bring him anything to eat this evening, so I just grabbed some Chick fil A. and woofed mine down in the car. He didn’t even want a bite of his but he sipped on the lemonade while I held it because he cannot hold anything right now.

While I was picking up the food and getting gas, I drove by all of the Christmas lights in town and found it hard to be excited about them this year. I usually always manage to ride down Christmas Lane every time I am in town but somehow, this year, I just haven’t even done it once.

Why is this happening? It is so lonely. I know we are where we need to be and I trust Dr. W fully. I just want to be home with him…normal like. Sitting on the couch enjoying the Christmas lights and laughing about something we are watching.

Now I have to hope I remembered to bring all of my contact stuff and tackle removing this new scelera lens which is giving me so much anxiety it isn’t funny.

Nite from the hospital chair.

We had a scary weekend and a scarier Monday morning. When we got up today, David was disoriented and having trouble getting out his words. He was having trouble holding things like a water bottle or his phone and kept dropping them. He was able to eat and take his meds and I called our primary physician and left a message for a call back. David could not sit upright for long and had to lay down. He was falling asleep. I didn’t hear back from the office, so I decided to just take him there.  I just need someone to tell me what was happening. I went in and relayed what was happening and Dr. W wanted us to go to the hospital for a CT scan. I asked if we were supposed to go to the ER and the girl said yes so we went. Walked in to standing room only and chaos. There was no place for him to sit. I tried to explain his condition and was told to complete a form which we didn’t have to do the last time we went with the same issues being a chemo patient. Anyway, I completed the form turned it in and was told to have a seat. I said where? She was on to the next person by then. I found him a seat and went outside to call Dr. W’s office again. I explained what was happening and they told me to go over to the outpatient side and wait and they would call me back. We did and got a call saying the order was ready. We were soon headed to CT and after that was finished, I wasn’t sure what we were supposed to do but I knew I could not take him back home. Something wasn’t right. I went back down to Dr. W’s office where I tried to explain what was happening and I didn’t know what to do and I guess that was just about enough stress for me because I broke down like a child and couldn’t even give her my phone number. She said to go out and wait in the car with him and she would call. Dr. W came out to the car and a nurse took his BP and heart rate. BP normal and heart rate around 112. It had been 129 when he left the house. He is having pain in the upper abdomen area. We battled the high temps at the start of the week and the low temps over the weekend. The confusion was getting worse. Dr. W said he thought he needed to be admitted for more blood so we went back over to outpatient and as we walked in they were already ready for him. Talk about service. We did a few registration forms, and they had us In a room in under 30 minutes. David was getting more disoriented, and I was trying to explain what we were doing. So as of now, we are in a room waiting to get blood. He already had another type match. I haven’t seen the CT results yet, but I am expecting there to be fluid buildup in the 3^rd space causing these issues. Not knowing what to do is terrifying. I am grateful for our doctor that can see him and be able to let me know what is happening. I did send a message to Dr. B’s office letting them know what was happening. We should see Dr. W later this evening.

David is always the one that calms me and tells me what to do next. I don’t have that and it is horrible. I have never felt so alone in my life.

December 14, 2024

On Tuesday evening, 12/10, David’s temperature started to spike again. We went back and forth with acetaminophen for a few hours but did not call the oncologist on call. David and I both felt like this was a repeat of what we have been battling for the weeks following the liver Y-90 as well as the ones following the chemo. Still, it is concerning because all of the same symptoms are what you watch for in sepsis as well.

On Wednesday, 12/11 and Thursday, 12/12, his temp went up over 100.7 and still he did not want me to call. We managed to control it again and he slept through the night but woke up soaking wet from the sweat of the breaking fever. Thursday morning, we decided to send a message through the portal to Dr. B just to get his take on what is going on. David got a call from one of the nurses and she asked him about any new symptoms (nothing outside the usual extreme fatigue and temp spikes). He told him Dr. B wanted him to come in on Friday to have blood work to see what we were dealing with, and he called in a prescription for an antibiotic to start (Augmentin). I went and picked up the prescription so David could start on it right away.  I had an eye appointment in Atlanta for a contact fitting on Friday morning and I had already rescheduled this appointment a few times due to various cancer issues that cropped up. Having keratoconus, it is difficult to navigate all the eye appointments and new contacts and the fitting process. I need another cornea transplant but because of all of this cancer stuff, I am trying to put it off as long as I can. The recovery time is around 12 months, and I am the one needing to drive right now. Anyway, we said we would come to Fayetteville straight from Atlanta. Normally, David would not have gone with me feeling the way he feels, but it would have taken longer to come back home and then over to the doctor. So up we went. I packed a bag with toiletries and changes of clothes in case we had to go to the hospital, and I had Ensure and snacks for him going and coming. My appointment did not take that long and before lunchtime we were headed to Fayetteville. Before leaving we took his temp and it was around 96. More on the low side now.  About halfway there, David’s slight hand tremor turned into full body tremors. This was not seizing or chills but tremors. Head. Arms. Hands. Legs. Everything. This was very scary once again because I didn’t know what to do. By the time we reached the hospital, he was having trouble walking and getting inside. Temp was still around 97 at this time. Once they called him back, they planned to only take blood from his arm and not use his port. I asked if someone could take his BP and heart rate before taking the blood and they did. BP was 120/73 and heart rate was 139. Tachycardia. Of course, this got attention and they moved us out of the lab into an exam room. They accessed his port to get the blood draw, and we saw C the PA who we haven’t seen since early in the year. C was concerned and took a minute to catch up with things and discussed with us that he was showing signs of sepsis and that we just had been in the hospital and had all the cultures done, it also indicated it could be the same cancer fever. WBC was in the normal range and hemoglobin was 8.1 which is still low, but it is better than the 5.9 it was before the transfusion. It is so hard to know what to do and even the doctors are guessing. At least it isn’t just us not knowing what to do. He decided he would like to go downstairs and talk to Dr. B in person and get his opinion on the best thing to do. He said he really hated to send us to the ER. We said we didn’t want to go either. David was still having these wild tremors, and so I got him to get on the table and stretch out to try to calm his heart rate while we waited. C came back and said Dr. B also did not want to send us to the hospital and risk us getting trapped there all weekend like before. He said to continue the antibiotic and let them know ASAP if the fever spiked over 100.5 and had new symptoms. We were glad to be able to go home. C offered to have David get a bag of IV fluids and we agreed to do that hoping it may bring any wayward electrolytes back into line and calm the tremors as well. The fluids took about an hour and a half and we went downstairs to infusion room #2 for that. David fell right into a fitful nap as soon as the fluids started and I just sat and watched him sleep. He woke up a few times with a start but seemed able to relax a little. His heart rate came down to around 118. The tremors did gradually lessen and by the time we left, I could hardly tell he was having them. He went fast asleep in the car and slept nearly the whole way home. I got him inside and on the couch to relax and got busy unloading the car and feeding the cats. His feet and legs were already swollen from the fluid by the time we got home. His temp was around 98 before he fell asleep on the couch. After about two hours, I went to check him and he was in full shaking mode. I pulled the blanket off of him and could feel the heat coming off his body. His temp was 103. I know we should have called it in immediately but he was in such a state, I knew the most important thing was to bring the temp down as soon as I could.  I got some acetaminophen in him and got him sitting him and put ice packs behind his knees and cold washcloths on his head. He was drinking water but was so shaky, he could not hold the bottle. When I say I was frightened, that is an understatment. It took a good 30-45 minutes to start to see the temp come down and he was getting tired of the ice packs so I took them off. Within an hour, the temp was down to 101 so I was hoping it would remain on the decline. I gave him ibuprofen at this time, after about two hours, it was down to 99.7 so I told him to let’s move to the bedroom where it was a bit cooler and he could go to sleep.

This morning, I woke up a couple of hours later to check him. His temp was 97. Again, with the lower temp. We both woke up around 3:30 to wet sheets and a pillow. He had started sweating again, and so I changed his clothes and the sheets and we tried to go back to sleep. Around 7:00 this morning his temp was 94. This is as concerning as a high temp and could be any of the same issues including sepsis. I asked if he wanted me to call it in and he said he wanted to ride it out and see how today went. I got him up and moving around and we walked the driveway up and down a couple of times today. He has been so very tired and weak and cool to the touch. His temp hovered around 95-96 all day and around 9:00pm this evening, it was going up to around 97.7. The low temp is new to us and he said he never felt cold and actually felt ok for the most part after the harrowing night. He didn’t sleep too long today although he seemed pretty sleepy and kept nodding off. I think I was keeping him awake more than usually because I was so afraid it that temp jumping up again so quickly. He went to bed around 9:00 pm this evening and I told him I would wake up in a few hours to check his temp and make sure the night fever sweats had not soaked the sheets.

This sure is hard. I don’t know how else to say it. It is just hard. We know the “right” thing to do is call when the temp reaches 100.5 but that is going to happen without fail according to past experiences. It is so hard to do that knowing you will most likely be told to go to the ER and I know he doesn’t want that. I truly hope our trying to manage this is not something we regret. Hoping it is still relatively normal when I check him in a little while.

December 6, 2024

We got to URMC right at 7am on this balmy 28 degree morning. Man, it was cold! We went right in to the treatment room and got started with the preliminaries. Guess what? Nurse said right off his hemoglobin was not as low when they did the type match as it was on the lab work from Dr. B’s office. Hemoglobin was 6.5, so still low but like the last time, not as low as the readings they are getting. She explained some factors like hydration could affect this, and I can see maybe a day later, but I am still leaning toward something maybe needs some calibration on the 5^th floor? The last time is was only 30 minutes later when we went to the ER. I don’t know. Just seems something is off if this has happened twice now. Me, with all my medical knowledge.

David had a stomach ache this morning. He had taken one of his morning pain meds and it helped some after he got settled.

I finally remembered to bring his Advance Directive to have it scanned into this system. I went to do that while he was getting started on the first unit of blood and he was happy about my doing that. It took forever for me to remember to get it over to Piedmont so now he can rest assured his wishes will be known within the Piedmont system and here locally. Pretty sure he has been secretly living in terror that the hospital would just somehow assume he had a DNR and he would not be resuscitated in the case of a minor incident. He also will feel better knowing I most likely won’t be able to prop him up on life support for eternity. Most likely.

Before the first unit of blood was done, David was already starting to get some color in his face. I have missed seeing that color. We have been accustomed to the paleness for so long. Would be nice if it lasted but at least this will give his system some help. By the time the second one was finished, his palms pinked up a little and his heart rate went down. Blood pressure remained good the whole time. All indicators his body likes the blood it was getting.

It took about an 1.5 -2 hours per unit. We had a real nice and accommodating nurse. Today we watched, Tom and Jerry, Leave it to Beaver, Rawhide, Bonanza and Gunsmoke. It was too cumbersome to play cards or do much else because every time he moved his arm, our old friend, Infusion pump, sounded the narc alarm that patient was attempting a more comfortable position and was occluded.  They ordered him a lunch since we were going to be there past lunchtime and while we waiting on that, he was forced by his torturously cruel on duty round the clock wife nurse to drink a high protein Ensure. He then dozed while I updated the symptom journal, and the doctor notes journal, and this cancer journal. Nurses, even pretend ones, be having to do the paperwork.

David donated blood for years, and through this whole journey, we have first hand experience of the importance of blood donation. We are so grateful for blood donors.

The third unit of blood went in as smoothly as the first. He slept after lunch and while the last bag was finishing.

We are thankful for Dr. W getting us in the treatment room so quickly and for Nurse P today who has such a calming and sweet demeanor. After around 7 hours from the time we walked in until we walked out today, one of us left with more color in his face than he started with this morning. Another gratitude moment.

December 5, 2024

We went to URMC today and got the type match done for the blood transfusion. It didn’t take long for registration and to run down to the lab. He got his red wrist band, and we went to Big Chic for a high calorie fry snack and a lemonade. I fell right into this supportive high calorie eating requirement. My mid-section on the other hand,,,,but we do everything together so I will sacrifice eating extra supportive fries in the middle of the afternoon for him.

December 4, 2024

David had a telehealth therapy appointment this morning. He has not been back to in-person since his WBC was so low just as a precaution. He doesn’t like the telehealth as well but he likes not having to ride to the office.  

We saw the NP today at Dr. B’s office for David’s lab work. When she came into the room she had his labs printed so we knew something was up. She said his hemoglobin was 5.9 and of course concern, concern, concern. She said he was in need of another blood transfusion and I thought I was thinking it but apparently actually said aloud that we did not want to go to the ER like last time and risk being admitted for another four days. I was a bit more abrupt that I intended to be but David agreed he would prefer to see if we could get into the treatment room at home at URMC. I called Dr. W’s office and left a message asking if he could order a transfusion and get David in. The NP faxed over the lab results while I was on the phone so the nurse back home said they would get it going. I told the NP that the last time we had labs on the 5^th floor and then had to go to the ER downstairs, that the ER blood work showed his hemoglobin and WBC count was higher than theirs showed and I wondered if that was the case again. It seemed to be a huge drop since the labs a week ago. She said they would run it again but my thinking was it was the same place that ran it the first time so wouldn’t it show the same results but ok. I asked once again why this was happening since we have not seen any blood loss and that would be significant. She said they thought it was a combination of the cancer and the chemo that was causing it. David is already anemic, and the Carboplatin is a bone marrow disruptor. The bone marrow produces all of our blood cells and his body was already at a deficit and then it gets hit with this disruption for chemo round two, it makes sense that his body cannot keep up. She said this is something that usually shows up within the ten-day period following this chemo treatment. From what we are seeing, this particular chemo appears to make him as sick as the cancer. This is hard. I don’t know a better way to describe it. It is just hard to watch. NP also said he lost 2 additional pounds this week which I also find hard to believe and am now questioning the scales between the two floors or at least what I was told he weighed last week. I know I must sound like a lunatic, but I am pretty conscientious about this stuff. At least I kept those thoughts to myself.

I had to make a quick trip to Lowe’s after the doctor’s appointment so while I was there, Dr. W ‘s nurse called to say David would need to go to URMC tomorrow for the type cross match and then the transfusion was ordered for 7am on Friday. He is to receive three units of blood. More than he has ever received before but this is as low as his hemoglobin has ever been before also.

December 3, 2024

I had asked to speak to one of the dieticians from Piedmont concerning David’s dietary needs since he lost a few pounds between visits. I was able to make contact today and we discussed more protein, high calorie foods, and supplementing. David will need at least 100 g of protein per day along with higher calorie foods in hopes of gaining the 2-3 pounds back or at the very least maintaining. She explained that while he is at a good weight, he cannot afford to loose more. Any loss puts him at nutritional risk. He is already weak from the anemia, and I can see his arms have lost most of the muscle they had. Amazing how fast this happens. We will need to supplement with Boost and/or Ensure alternating between the high calorie ones and the high protein ones. He isn’t too keen on this as he doesn’t like them very much. He usually drinks them down without complaint. We both hope that this extra nutrition will give him a bit more energy and he will feel better. The dietician also said light walking throughout the day was good. After the call, we bundled up and took a sunny, short, slow walk down our street. It was cold but it felt good breathing in the fresh air, He said he felt good after and seemed to be a bit more animated this evening.  We had a nice warm extra cheesy, pepperoni and sausage pizza for dinner and it was so good. We like having cold pizza for breakfast, so we are looking forward to that tomorrow.

December 2, 2024

Between work and playing nurse, I managed to get the Christmas tree up, find out some of the lights were out and string together a few more to make it work another year. I also managed a little decorating but there isn’t enough time in the day to do everything I need to do so I had to let that go for now. It is hard getting the stuff down from the attic myself so I may just be done decorating this year.

SL’s boyfriend, Adam, flew in from England (and boy was he tired..could not resist that old joke) Anyway, we picked him up at Hartsfield this evening. David decided to ride along because he didn’t want us having to go alone. We timed our arrival with the landing and didn’t have too long of a wait. David got really tired just riding in the car and pretty much went right to sleep when we made it home.

November 29, 2024

We had the funeral for my Dad today. David was not feeling up to coming to visitation, but SL brought him in time for the service. It was a nice service as far as funerals go. Lots of people said lots of nice things about my Dad. David was pretty tired so he and SL left right after it was over. He slept the rest of the afternoon and evening. Hair loss is continuing, and he has been more pale.  He does not have much of an appetite, but he is trying to eat. He is having stomach aches so this is new since the chemo. He says they are like tummy aches you would get as a kid.

Here is the eulogy I wrote and read for my Dad. It was an easy thing to write but a hard thing to read. I was glad I was able to get through it…for him. I had read it over and over for David and SL and they both thought it was good so I went with it.

My Dad

I am going to get through this for him. If I stumble for a moment, please bear with me until I find my footing and get back up.

You are not going to find a better guy than Danny Brown. That is what I have heard my whole life. I never met anyone around here that has not at least heard of him. People would say “oh he is that guy that did so and so or HEY, isn’t he that guy that did such and such?”.

Yes and yes. He did all the so(s) and all the suches.

Let me tell you about Danny.

He was a United States Marine and served this country in Vietnam. He loved this country. It was only a few years ago that he shared his experiences with me. He got out all of his old slides he took while he was over there and David and I soaked it all up. Every word. He built bridges and scanned for mines and built bridges again when they were blown up. He made friends and lost friends. He saw things there most of us cannot imagine and he kept those things to himself.

When he returned home, Danny attended Gordon Military College and studied Criminal Justice. Danny worked as a typesetter and photographer at the Thomaston Times newspaper. He was a dog catcher for Upson County (not one of MY favorites of his jobs once I found out he didn’t actually catch them to bring them home). He was heavily involved with the Civil Defense Service. He was a fireman. an EMT, a Cardiac Technician, A paramedic. He was the county coroner for 16 years. He was not a fan of the politics but he loved that job.  He maneuvered ambulances and fire trucks all around Upson, Henry, and Fulton County.  With the help of some good Thurston Community people, he was the founding Chief of Thurston Volunteer Fire Department and fought fires alongside some of the bravest men you could have ever known. He volunteered himself countless times over the years. He taught EMT/Paramedic certification training classes at Upson Technical College. He was among the first of Upson’s new EMS Agency employees, and in what should be no surprise, served as the Director at one point. He worked with the EMA’s Rescue Unit. Danny was a photographer and took pictures of everything. In the earlier days, he developed most of his own photos. He especially enjoyed wedding photography. Danny was a self-taught painter. Give him one Bob Ross tv show and he was painting landscapes and happy little trees and clouds like a seasoned artist. He was a guitar picker and singer. He enjoyed singing with the church choir and the Second Edition singing group alongside his wife Carla. He was a very talented woodworker. He could make anything you described to him. He had a little shop in town for a while displaying his woodworking next to Sonny Webb’s barbershop. Danny worked at Big C drug store delivering medicine. He worked part time at Kmart where he met Carla. He enjoyed helping people. He dabbled in computer repair. He worked at Carters. He operated the sound for the choir and church services.

Let me tell you about my Dad.

He was very smart. He knew how to do anything. He was intuitive and he could fix anything. He was impossibly stubborn and grumpy and sometimes he was downright cantankerous. He was incredibly giving. He was loyal. He loved his family. He was impatient. He was cheeky and sarcastic, and he liked corny jokes. He was a giver of gas money. He was a sneaker of cheeseburgers when Carla would go out of town to visit family (I don’t know if she knew that -sorry dad). He had the kindest voice. He was compassionate. He would empty his wallet if someone needed it and never ask for a thing. With all of his medical knowledge and skill, he could have been a doctor, easy.  He was the first one to show up at social gatherings and also the first one to leave. He took me to my first Star Wars and Indiana Jones movies and we saw every one after that. He taught me about computers on his Commodore 64. His motto from the beginning was “never delete anything” and he didn’t.  He shared his love of reading with me. He loved westerns and mysteries. Books and movies. He introduced me to Tarzan, The Lone Ranger & Silver, Matt Dillion and Miss Kitty, and Hoss & Little Joe. He rode different motorcycles throughout those years and he took me for rides on the back of them. He loved going down to Sprewell Bluff and taught me to skip rocks…sort of. He skipped perfectly. I just sort of…threw them in. Starting at a young age, he taught me CPR countless times using my baby dolls as models. He taught me to respect people and he showed me what it meant to be a Marine, a veteran, a patriot. He went with me to a skating party one time and broke his leg severely in two places trying to skate with me in an effort to keep bigger kids from knocking me down on my wobbly skates. Ironically, an ambulance had to come and get him. He had to wear a cast for six months. He never let me forget that. He loved classical music and taught me about the classical masters through Looney Tunes cartoons. He would point out the music in the cartoon and then pop on the record (yes, RECORD) of Mozart, Beethoven, or Chopin. He also is the one that introduced me to Looney Tunes cartoons. And that was our Saturday morning thing. He had a memory like an elephant. He made the best cheese sandwiches a five-year-old ever tasted. When I was around six, he built me a huge playhouse complete with real windows, carpeting, electricity and a porch. He even painted it pink. It is still standing today in our backyard. My daughter played in it also. Like his brother Norman, who he loved very much, he enjoyed all things aviation. He made model airplanes and played flight simulator games for as long as I can remember. He took me on a helicopter ride around Panama City Florida and I never forgot it. He taught me to fish at my Grandaddy’s lake with a Snoopy Rod and Reel set he bought me. I still have it. He always had to bait the hook, and untangle the lines when I did it wrong, and handle the fish when I cried because I was hurting the fish. He helped me learn to drive. He let me borrow his truck anytime I needed it. He helped me get my first job at Kmart where he worked as well. He was the photographer at my wedding and didn’t want to do it because he thought he was too rusty and had gotten rid of most of his cameras. He did it anyway and it was perfect.  He hated talking on the phone but answered his phone every single time I called and when I texted, he did his best with that too. When I was newly married and I graduated college and told him I was quitting my full-time job to start a pet sitting business all within the space of a couple of months, he said “ok let me know what you need”.  When I had a troubled delivery when Sarah-Lauren was born, his was the second face I saw when they had me in recovery trying to revive me. David’s was the first. Most recently, Carla was needed elsewhere for a bit, so I got to share something else special with him. His first ever colonoscopy prep. He had to drink the cocktail every 20 minutes until it was gone so in truest Danny form (of one of the most impatient people on the planet besides me), he decided to just chug it down. Went from I don’t need this little cup and went straight to “Bartender leave the bottle”. He said and I quote, “this isn’t going to be too bad at all”. Despite my detailed account of what was going to happen and my noting how far away he was from the bathroom, he was genuinely surprised when the party started 11 and a half minutes later. Carla was the true hero in that because she came back before the party got too far out of hand between him and me.  Plus, cleaning up a party is always the worst job. He and I laughed that day like we had not in a long time. And I will be forever grateful for Carla for letting me help and literally see a side of my father I never saw before. (Thanks a lot Carla!!)

When I got up yesterday and it was raining, because I like rainy days, I thought, this is a perfect day. Carla texted sometime later in the morning and said “your dad loved the rain” His smiles are still everywhere if we just look.

He was a son, a brother, a husband (more than once), a Dad, a father in law, a brother in law, an uncle, a papa, a friend, a mentor.  He was humble to a fault. He would not have understood the fuss being made over him. He did not know how to accept praise or compliments paid to him and didn’t think they were warranted. He did not realize his importance and his impact. He tried so hard to do the right things. The things he thought made a man. He didn’t think he was a good dad. I thought he was the best dad. He was a real-life super-hero. Defender of country, Fighter of fires, rescuer to those in need, a voice for those who passed away suddenly or unexpectedly, a capturer of memories, a good and faithful servant.

People ask me how I got my name. DeeGee. Well, I will tell you. The D is for Danny and the G is for Glenda. They didn’t want me to have initials for a name so they added in the ee’s for fun.

He called me Doodlebug from as far back as I can remember. Every time I went to his and Carla’s house, he would be sitting in his computer chair and the first words, as he was getting up for a hug was “Hey Doodlebug. Come on in”. The last words he said to me when I saw him last was “Bye Doodlebug. Thanks for coming”  The weight of not hearing him call me that ever again will be substantial once all of this settles.

How he left this world is not indicative of how he lived. And just how much he made our lives better, is immeasurable.  That small, tiny moment in time on Sunday afternoon when he snatched back some control he had lost to a disease much bigger than he was, does not come close to the sacrifices to county, the service to community, and the love for God and family. Those big, huge, incredibly impactful moments were his life and will continue to be.

Danny, my Dad, was good and honorable and I always trusted him to know and do the right thing. Nothing about how he left us changes that. So, I will say it again for the people in the back, and for him. You won’t find a better man than Danny Brown.

I hope when you think of DANNY, that you smile, because that is what I will be doing when I think of my DAD.  

Bye Doodlebugs. Thanks for coming.

November 27, 2024

Today another day of Etoposide so another short day. We ate our snacks and basically watched the clock tick down before we were back on the way home. The funeral home said Dad was ready to see, so I was going to drop David and home and meet my step mom there. David was tired again all day and was ready to get comfy on the couch. He was feeling nauseous during chemo so they gave him an anti-nausea med as a push in the port. He was still feeling the same when we got home so he took another one of his anti nausea meds and went to sleep while I went to the funeral home. No temp spike as of yet. Still a good bit of hair loss when showering. Beard is thinner. Cancer sucks.

November 26, 2024

I got up early for a grocery pick up and stopped at the pharmacy to refill my anxiety meds. Those are working overtime today. I also took a ride to the cemetery where my dad will rest once the ashes are returned. I went ahead and put the new Christmas flowers on the graves since I had not made it to putting out Fall ones. I had a chat with my grandparents and an uncle I never met. I went back to pick up the meds at the pharmacy and started to cry while sitting in line. There is no rhyme or reason to when the thoughts hit you. It just happens.

Today we had to be in Fayetteville at 2pm. They accessed David’s port and got him going with the Etoposide. This is the short day so we were only there for an hour once it got going. He was not feeling well today and neither of us felt like being there. He left his phone in the car so he asked if I would walk down and get it so I did. There weren’t many in the infusion room today and the nurses were decorating for Christmas. He didn’t feel like playing any games today so we basically just sat and scrolled on our phones watching the time tick down. He was in a bit of sitting pain today and it didn’t let up. He could not get comfortable in the chair and was glad when it was time to go. We headed for the car and home. His beloved McRib is back in town (yuck) and he said he felt like one of those, so I stopped at McDonalds for that. He wasn’t feeling much better when we got home so he just stretched out the couch and waited for his evenings meds to kick in before he ate. I spent the rest of the evening going through old photos looking for ones of my dad for the video tribute. I have not had a chance to cook my cornbread for the dressing I usually make, and honestly, my heart is not in it this year. Especially not now. Maybe I will figure something out sometime tomorrow. Last day of this round of chemo at 2 tomorrow. More hair loss today and continued pain and some nausea.

Monday, November 25, 2024

It was a short night. Not much sleep for me, but we got up and got going with some breakfast and a shower to make it to Fayetteville by 9.  David was moving slowly and having trouble walking. He was sort of stumbling along and the tremors were a bit worse this morning. I brought it up to Dr. B and he said he felt David was dehydrated and needed more protein. He suggested high protein Ensure, etc along with smaller meals throughout the day. He said he had lost some weight and we needed some higher calorie foods to keep that weight one. He was 207 this morning down from 215 ish a few weeks ago. I felt like a horrible chemo wife. Like I have not been feeding him right or something and Dr. B didn’t make me feel like that. It was all me. He makes himself eat but sleeps so much of the time it is hard to wake him up to drink and eat every few hours. At any rate, Dr. B felt this would help so we are going to work on those things and hope for some improvement in these areas. David’s hemoglobin was slightly below where it was leaving the hospital and his WBC is back up around 8000 (8). This was good to hear. Dr. B said if David felt up to it, he would like two more rounds of this chemo before ordering a scan to determine if it was working. He looked at the scan from last week and said it was too early to determine if the chemo had any effect since there had only been one round. David said he was up for it. I beg to differ if I am but he is the boss. There has been more hair loss and his beard is even thinner. It tears me up to see it. I know it is just hair. But it is so hard seeing it happen. He let me cut it this weekend and he lost the last vestiges of his ponytail. Yeah, yeah, he was too old for a ponytail. It made him, him though. Just something else cancer has taken. We were both out of sorts today. It took around three hours by the time they started the drip until we could leave.I got him a new set of UNO cards. NFL edition. We didn’t feel like learning the new game play so we played the old way with the new cards. He plays just as dirty with the new cards. We stopped for Chick fil A on the way through Senoia, and I got him settled in at home then went to the funeral home to help with arrangements for my Dad. David was a bit nauseous after I got home and he took some of the anti-nausea meds and it helped. He slept on the couch while I worked on my Dad’s obituary and updated the blog. Calling it a night now.

Sunday, November 24, 2024

My Dad died today. He was 78 but it was unexpected. I wasn’t ready.  It is an immense loss yet to be quantified.  I am standing on the verge of intense grief but at the same time cancer does not give one damn. Chemo is tomorrow. Early. Grief will have to wait.

November 20, 2024

David had a CT scan of his liver today. We met with Dr. K (Interventional Radiologist) to discuss the outcome of the Y90 treatment.

David’s liver is worse. There are more tumors. The Y90 was not effective. There is no further course of IR treatment he can offer since this was not effective.

I asked if any of it worked on any of the targeted areas, and he said it was hard to say as more tumors have popped up most likely due to the suspected microstatic disease in the areas that were either ablated or radiated. He said these could have regrown or they could have always been there undetectable. He said the goal was to hopefully treat the seen and unseen with the treatment. Either way, that didn’t happen. I asked about the swelling David seems to experience in his liver abdomen area. They looked at the scan and saw very slight ascites. He said it wasn’t anything to warrant paracentesis right now but if it continued and became uncomfortable or even if he just wanted them to perform an ultrasound to check to see if it was needed, just to give them a call.

David was wearing his Abide tshirt today and Dr. K said that was his favorite movie. The NP was unfamiliar with The Big Lebowski so David gave her the short version of the life lessons the movie teaches, Dr. K wished us well and said he hoped the chemo offered better results. The NP was very kind and said we could call them anytime and talk to an actual person even after hours even if we just had questions or concerns.

David sleeps most of the day and night. We have only had one or two temp spikes and they were low level around 100. He woke up sweating this past Saturday morning while napping and had to change his shirt a few times but his temp was never over 99. He is foggy and has trouble staying awake when we have tried to watch a show or just talk. Dr. J (Supportive Medicine) called David and talked about the hospital stay and his pain levels. He called in his pain meds on Thursday last week but only one made it to the pharmacy. We were unable to get in touch with him until this Monday. They cannot send in or write prescriptions for these meds after hours. Our pharmacist is so sweet to order them for us because they are certainly pricy and it takes a day to arrive once they have the order from the doctor. It was Tuesday before we got them. This means he was without the time release meds all weekend. It has been tough, and I think it has affected him. Monday, he fell down on his right side as he was trying to slip his feet into his shoes. He has been very sore since. He is losing head hair and beard hair. It makes us both so sad. Me more than him I think, He has a slight tremor, and I do not know if it is from the meds or the chemo or something else. It started as slight a few weeks ago and now I notice it more frequently but at times that seem random not related to med timing or food. I will bring it up next week at the appointment. He does not have much of an appetite but he does manage to eat well enough. I have been cooking a good bit since we have to be careful of foods with the low WBC. He drinks plenty and stays hydrated. He played some games on the old Wii console to move around and got really tired. We got him a massage mat to see if it helps with pain distraction or just plain distraction. He can use it in a chair or laying down. It has a shiatsu massage in the head and neck area and then just vibration down the rest of the mat. He says it feels nice and that makes me glad. He is going to his therapy sessions and says they help him work through some of his feelings.

I miss him. I miss him telling me things. How things work. Things he is thinking about. I feel lonely and (self) isolated even though he is right here. And he says he is sorry and it breaks my heart because he has nothing to feel sorry for. This isn’t fair. What a joke to even say anymore. People say “stay positive. that is the key.” To what? Healing? Getting better? Coping? How do you do that when you are in a living hell watching this happen to your person? He is so brave and he hates it when I say things like that because he doesn’t think he is brave or that bravery has anything to do with this but he is. Because I don’t know that I could go though what he is going through. For him, of course it would be worth it, to try to survive for him, but I know I am also not as strong as he is. To keep fighting and keep getting knocked back. Even still, I keep wishing it was me instead. Watching is also hard though, so I wouldn’t wish that on him either. I keep asking what can I do for you? What do you need? Nothing makes sense and no one can explain it to me where it is acceptable. Why do prayers not work out for us but they seem to work out for others? Am I not doing it right? Sometimes I fall asleep begging for help for him. Not for me but for him. For him to just have some time pain free to get to live again if even for a little while. Is it because I fall asleep in the middle of asking? Am I saying the wrong words? Are we just suffering for some other reason we will never comprehend? Is it all just life happening as it does? But I see others get clear scans. Others get results from procedures or treatments. Others get good news. Others go on to live their normal lives never knowing this kind of physical and mental agony. So you would assume that prayers are working for some right? I see people say “PTL scans are clear”. Do they PTL when they aren’t? Is that what I am doing wrong? I am not thankful for bad news? Others have it worse. Why is prayer working for some and not for others? Just our lack of good fortune? Or did we already have that good fortune earlier in life? Was that taken for granted? I have so many why fors and no clear answers and a lot of sadness and bitterness despite fighting those feeling every single day.. Someone asked me this week if she could help me with anything. I said no that there really wasn’t anything and then I thought about prayer not working for me so I asked that she pray for David instead. I don’t do things like that but thinking maybe God will hear her. Maybe she knew how to do or say it the right way. The way other people seem to know how to do it.

I got a little book this week called Anticipatory Grief. It sounded like it may explain some of these feelings I am having. I haven’t been able to read past the first page yet. I am having nightmares regularly. I told him I felt like just by buying it that I was giving up any hope. I told him I didn’t want him to think that I was planning for anything. He said no. It was just me trying to understand feelings I was having. I am tired of being angry but cannot seem to understand how to move past it and just go with things. I cannot understand why someone so damn wholesomely kind, compassionate and intelligent with so much genuine goodness to contribute to this upside down world lays here in pain struggling to live. He is always better at those things. He is the one that guides and encourages me. Keeps me on an even keel and that is a full time job. He is the one that remains positive. He is the one glad when someone gets a good medical report even when he doesn’t. He is better at everything than me. He IS everything. I am the one that feels this is so unfair and the one that can’t seem to be heard by God or the universe or simply by manifestation.

After some sort of confusion about who was going to discharge and then not receiving the discharge order from the hospitalist before he left and being told we would have to stay, the doctor reached out to David personally by room phone and said he got it handled and we could go. Our day nurse was tired and ready to go home I am sure, but she worked to get an answer and even ran down a few people for answers working hard to get us out of there before having to hand us off to night nurse who unwittingly inherited two people packed up, sitting on a suitcase ready to bolt with no discharge orders. Around 8:45 pm David was able to have the last IV line removed and get dressed in his baby’s going home outfit. Night nurse brought the paperwork and said they normally did not allow night discharges after a certain time. She said she was going to take him out so he could walk out with her if he wanted or she could get a chair. He opted for the walk to the front door while I ran (not really ran because I don’t have that kind of physique and I fall down like a toddler a good bit) like mad to get the car before someone changed his or her mind. I wasn’t looking forward to having to tunnel out of the hospital plumbing Shawshank style if they said we had to stay until morning.

We got home around 10. We both are exhausted. No.  Exhausted isn’t even in the same thesaurial dimension as the word for what we are. A 30 min routine doctor’s visit turned into a 4 day hospital stay. Cancer is unpredictable and mean and scary and it does not give a &*@# who you are or what you had planned last weekend or this weekend when you had to reschedule last weekend. It just does not care. It is an equal opportunity diabolical ass of a disease.

Through this, we could not have asked for a nicer group of people from the moment we walked into the ER on Friday afternoon until the time we walked out tonight. That includes doctors, PAs, NPs, nurses, techs, students in training, housekeepers, nutrition workers, etc. I wish I could express that to all of them personally. They all made an uncertain situation much more tolerable.  Not one single doctor in all of the ones we saw, made us feel like they had any other place to be but right there talking to us.

Now, I am going to sleep for weeks. Nite.

November 11, 2024

Looking out through the glass separating us from our home planet, there is much unusual life on this planetary dimension called hospital. Beings seem to come and go freely while we two continue to be mired in a space time continuum of tests and antibiotics and repeating information to different doctors over and over.

After another sleepless night, due to blood work and vitals and new IV bags, radiology arrived for David at 7am to take him for a kidney sonogram we had no idea had been ordered. It was also a surprise to night nurse who was in the process of relinquishing the conn to day nurse. Today in our quest to find some reason to keep the prisoners here, we looked for kidney stones due to some slight hydronephrosis in the left kidney that was noted in the scan Saturday. No stone. No infection. He still had some swelling in his feet that is better than yesterday. Leaving off the fluids and adding back his BP medication that is also a diuretic seems to have helped some. We have seen so many people today because apparently everyone works on Mondays. We saw the hospitalist we saw all weekend around 9:30 and he had already reached out to Dr. B’s office asking for someone to stop by. I asked if we could leave today and he indicated he was inclined to think so but wanted to check the sonogram results that had not come back at the time. WBC is still at 1500 and Hemoglobin is now up to 9.2. Back to where it was last Saturday and where it sort of hovers normally. I brought my things over from the hotel last night and called to check out this morning in anticipation of going home today. We had some visits from the cancer resources people here at Piedmont and they offer free wellness classes like Yoga and Tai Chi for patients and their spouses. We also had a visit from other wellness staff explaining that they offer feet, leg, neck and head massages for Piedmont patients and we thought that was a really nice service to offer patients and a nice way to make someone feel a bit better. David was unable to partake since he had some edema. David napped a good bit this afternoon, and I talked to the housekeeper about the mops they use and how they don’t work as well as the disposable ones they used to have, and I talked to the guy that picks up the sharps containers and how he goes to every room and every floor and then starts all over again and how he is 68 and goes to the gym regularly and he feels it keeps him feeling good. There were a couple of student nurses doing clinicals today. One from the college where I work and her instructor. They asked if she could do a head-to-toe exam training session and David said yes. I knew our nursing students went out for clinicals but it was interesting getting to see what they do from this side of things. I also talked to a new tech trainee about her experiences so today has been busy.

4pm and the PA from Dr. B’s office stopped in to say she spoke to Dr. B and he says he felt it was ok to go home this evening. The biggest question was with the temp spikes, when will we know when to call the office. We should call and get checked out with a fever with symptoms. Things like fevers with headaches, sore throat, muscle aches, etc. The main infection concern with neutropenia is bacterial so we will need to watch for scratches. Avoid things that would introduce bacteria like gardening, scooping the litter box. I have been reading about diet with neutropenia. Need to wash all fruits and veggies extremely well and veggies and fruits if possible, need to be cooked. No raw veggies. No raw fish. All meats need to be cooked thoroughly. Avoid deli meats. Many of the same things you would avoid being pregnant. And like the PA said, it isn’t forever and will just be while the WBC is so low. It is suggested we avoid Thanksgiving and any public places where people are if it can be avoided. She said Dr. B plans to start shots following the chemo that should aid in this drastic drop in WBC. She said the biggest worry on Friday was that he needed blood ASAP and he got that so the rest can be managed. She said he was not going home with any antibiotics because the plan was to start these shots. I will look more about this soon. So we are just waiting here on the discharge order to come through and unfortunately, here we are knocking on shift change again. We can wait knowing our own bed is in our sight tonight. David is getting uncomfortable as he does this time of evening when it is time for the meds. He went ahead and asked for one of his as needed pain medications and hoping that will be working by the time we get to leave.

6:25 pm and while still waiting sort of patiently for release, we had a visit from another doctor. This one from Georgia Urology that was called in to consult on the hydronephrosis that showed up in his left kidney on the sonogram this morning. He was called to determine if that could be causing the fever. He said it was not and interestingly enough, he told us about a recent study I had just read about this morning when I couldn’t sleep. There is correlation with chemo and or the cancer causing hydronephrosis in kidneys. He said they would be able to monitor things like this and welcomed us to come and make an appointment. He explained if the hydronephrosis worsened, one course of treatment would include inserting a drain in his kidney to drain out the urine. He said of course that opens up another route of infection so if that can be avoided, they would like to keep a check on that.

These cancer treatments we go through in an effort to possibly eek out some extra months or even a year if we get really fortunate, play hell on our body but cancer itself does so damn much to our body and tries to kill us in more than just the one way. It wants us in all the ways. Our own body turning on itself but also fighting like hell to live. It sounds like a movie plot and definitely of the horror genre. I prefer comedy and fantasy myself or one where the main character, despite the odds, lives to fight another day. Those are the really great ones.

November 10, 2024

We slept much better last night because the nurse and tech didn’t have to come in as much and because we basically passed out from extreme exhaustion. We got up every two hours for David to pee but we both went right back to sleep after. I alternated “sleeping” between the little narrow park bench couch bed and the rack torture hospital chair. It was so hard to wake up this morning but wake up you do, like it or not, at shift change and when breakfast is served before the roosters even roll over to hit the snooze button. We both felt better this morning even after having incremental sleeps. When David was up though, it was obvious he was more swollen than the day before. His night nurse stopped by before she left, and I showed her because he happened to be up walking to the bathroom. She said it was noticeable for sure. We both thought his feet and legs were more swollen. The hospital doctor stopped by mid-morning and we discussed meds he had not been given the day before as well as the fluid retention. He gave David a good exam, feeling of his midsection and legs and feet.  He agreed the swelling was worse. I asked about the fluid he was continuing to get and if that could be helping to contributing to the retention. He has never had an issue with feet or legs swelling before now. He said it was possible, and he would back off the fluid. He has been receiving fluid constantly since the ER on Friday. I kept reading that a damaged liver or kidneys for that matter, can only keep up and process so much fluid. We were hoping this is what is happening coupled with not receiving his BP meds. I think it was overlooked and just another reason why you need someone with you in a hospital situation. He was very attentive and listened closely and considered everything I asked. He said he was ordering an ultrasound to check for blood clots due to the fluid retention. His visit was followed by another visit from the infectious disease doctor we saw yesterday. Both discussed the scan and are leaning toward this being fever brought on by the cancer itself. (Cancer fever) I feel cancer is just a diabolical monster made up of your own cells that go rouge and attack your other cells before they know what is happening. Cancer just decides things about your body and your life at will. If you are lucky, you get treatment and it helps turn things around for a while. If you are unlucky, as we seem to be, these monster cells are masters of disguise. Some move quickly, disguising themselves as your regular everyday cell so they are unrecognizable by your normal cells. They can then replicate into more little monsters. But, I digress.  I asked about going home and hospital doctor said possibly tomorrow. He wanted to wait the full 48 hours for the cultures to develop and also wanted to reach out to Dr. B on Monday. After they left, the nurse told David he could shower so he happily jumped in the bathroom for that. After all of that and getting reconnected to all the lines and such, it was 11:20 and time for lunch. Does food come early in hospital land or does everyone else in society just eat later? Anyway, we may be in the hospital but it is still football Sunday so after he ate and got comfy, he settled in to nap and watch the Falcons (lose to the Saints and not be dem birds or dat bird this week) I left for food and a shower. I took the longest shower of my life but didn’t catch a nap today. Felt too guilty being away in a hotel room while he was stuck two buildings over. While I was gone, David texted that he went for the ultrasound. I pulled up the scan on his MyChart and saw there were no blood clots and shared the news with him. Being able to see results so quickly in his charts is a blessing and a curse. For the most part, it works best for us. When it is bad news, we can process it how we need before talking with a doctor. When it is good news, I can move on from there with working on my next untrained medical doctor theory to discuss with the already actually trained medical doctor. I guess it is just my self-appointed job. I don’t know how annoying I am, but it is all I know to do. I got back to a slightly happier untethered David who was free from lines and beeping machines. He even got one IV removed from one of his arms. He was freely walking around the room stacking up his dinner dishes.  It didn’t last long because after shift change, here came another two bags of antibiotics along with another blood thinner injection in the belly. I asked why he needed that again and nurse said just standard while in the hospital. No more fluid so that was good. Legs and feet still swollen this evening, and I am hoping we can pee some of that out. One bag of antibiotics is already done and I am waiting on the second one to finish. That should be all for the night. He has been sleeping off and on watching the last game of the night. Now time for vitals and his temp is 99.2. It has been holding there for a few hours. Hoping no spike tonight and he can sleep. Tech said she will be back at 3am. Antibiotic will run out before that but maybe we can get some rest and hope beyond hope, go home tomorrow. As of now, his WBC is up to 1500 (1.5) and hemoglobin holding at 8.3. Cultures are negative as of now. I am just anxious about how to manage “cancer fever” with a low WBC. I will have even more questions by morning. I dream in questions.

Note: We have a pretty large room, almost suite like, and a huge window with a view of the parking lot so we are grateful to have room to move around and a few choices of places to not sleep. There was this dresser cabinet and it always looked like it was smiling.

November 9, 2024

Do you know what they don’t cover in patient chemo education? ANY OF THIS! It did not get better this morning after I had been awake for nearly 28 hours. Sure it was the stress and anxiety of all of this serious stuff plus hormonal stuff and just not wanting to be here. Also, I was pretty sure I was starving to death. Patients get seen to as they should. The caretaker, whose presence is absolutely necessary in the hospital room due to the vast knowledge of all things David Gassett’s cancer, must fend for herself. It is scary when new things happen AND you don’t understand why AND you have 1000 and 7 questions building in your head AND you don’t know the doctor on the floor AND we were both exhausted AND your person isn’t able to help you find your way. We made the decision for me to go next door to the Holiday Inn Express and get a room to shower and take a few minutes away from the room. I couldn’t make that happen until after check in at 3. But I did and felt guilty for leaving. I feeI guilty for a lot of things while also knowing the importance of taking a minute or two for yourself and I definitely was not myself and was not helping him by breaking down every other half hour. I grabbed fast food lunch-dinner and checked in. I texted David and said I was closing my eyes for 45 minutes and would shower then be along. Stuck to that only because I had a nightmare at 4:30 in the afternoon.  Otherwise, I would still be sleeping there next January like a hibernating bear. During the time I was gone, he was taken down for a CT scan of his torso area. The floor doctor consulted with an infectious disease doctor both of which had stopped by and talked to us earlier in the day. I shared all of the printed info I had regarding the chemo meds and all labs, scans, etc from last week’s hospital visit. He took pictures of it all and said he wanted to review it. He was appreciative of the info. They wanted to rule out any possible infection that may be able to see with a scan. We liked both doctors and both seemed determined to make sure if there was infection lurking, they would find it. We all noted some swelling that had started in David’s legs and feet and mid section. Once David was back in the room, it was back on the fluids he had since Friday evening and more antibiotics. They gave him a blood thinner shot in his belly as a regular hospital precaution. Then more beep beep beep of the IV machines with their little scrolling “occluded – patient side” messages and the “infusion complete” messages when they really were not complete. The machine was so loud when one of these alarms went off and the nurse had to be called every time. I quickly learned how to fix the annoying occlusion and at an even more impressive speed, learned how to turn down the volume of the damn things. If I could have stopped the clicking and whirring one of them was doing while we tried to sleep tonight, I would have been a hero of an Iron Bat Super Man proportion.  I need a shirt that says Occluded-Patient Side. People who don’t have hospital stay experience may not get it but I know nurses will. Geez Louise with those IVs.

November 9, 2024

We headed over to Fayetteville this afternoon for the oncology labs and appointment. We were scheduled to see the NP today and not Dr. B. When the NP came in, she said David’s hemoglobin was 6.6 and even more alarming was that his WBC was (710) .7 which meant he was neutropenic. She went to speak with Dr. B.

A scheduler started calling around to see if there was a hospital location anywhere near us that could do a blood transfusion asap. While we waited on that, I asked about the serotonin syndrome. The NP considered it could be a thing. I also asked how we would know if the port line was infected and she was interested in why I asked. I explained because that is a thing of course, but also our primary mentioned it happens sometimes but rarely without some other symptoms. The discussion didn’t go too far because the scheduler called to say that since it was approaching closing time on a Friday afternoon, there either was no answer at the locations, or they couldn’t do it until sometime next week. The NP said Dr. B felt this could be cancer fever but fever spikes are a major concern with neutropenia so they told us we needed to go to the ER. Dr. B’s office does not have admitting privileges so this meant David would need to be admitted through the ER. We were given masks and told to stay far away from sick people. We debated coming home to URMC, but David was ready to get the ball rolling here not knowing what this may turn in to  so we went downstairs to Piedmont Fayette’s ER with all the sick people. It was difficult to find a place to sit away from anyone but we did our best and they called him back in about 15 minutes. Like we found out last Saturday, ER’s tend to pay attention to people with feverish confusion and also people with very low white blood counts in need of a blood transfusion. After the assessment, they got David back to a little room in the ER and they told us they were initiating neutropenia protocol meaning healthcare personnel or visitors who have a communicable disease (including colds and other respiratory symptoms) should refrain from caring for or entering the room. Everyone else has to wear a mask. They got started with the IV lines, fluids and blood draws. They immediately started more cultures and got him going on broad spectrum antibiotics. Radiology came down for a portable chest Xray (his second in a week). They told us they were doing the same sepsis protocol we had at URMC last week. Cancer patients are susceptible to sepsis and it can happen very quickly. It is basically why I had him in the hospital or doctor’s office more than normal this week. I shared all info, labs, scans, etc. We saw the ER doctor and she said she would be admitting him and starting the cross match for the blood transfusion. Oddly enough, with the lab tests in the ER his WBC was 1400 (1.4) and his hemoglobin was 7. ER doc thought it odd as well. At any rate, they moved right along and around 8pm they were getting ready for the first unit of blood. We had been back and forth, since learning he would be admitted, trying to decide if I should take off home and pack a bag and finally decided I would go and then come back. He would most likely be moved to a room by the time I got back but the nurses said they would be sure I could get up to the room. Aggravating I had packed a bag when we went to URMC on Saturday and also when we went to see Dr. W on Wednesday just because we didn’t know what was coming. I did not pack a bag to go to our regular oncologist appointment, but I bet I do from now on. Before I left, I asked his nurse if he could have a snack or something since he had not eaten anything since before the doctor’s appointment. He got him a turkey sandwich, saltines, graham crackers and some juice. All of the ER nurses, lab techs, med techs and doctors were so nice and accommodating. When leaving through the ER waiting room, it was now standing room only and I thought about all the sick people having wait on their turn and how miserable that was for them. Noting a little gratitude that we didn’t have to wait that long nor were we that familiar with ER waiting rooms. I drove the hour home stopping on the way to grab food to eat on the way. David texted me as things were happening to let me know what was going on and what they were giving him. I got home and grabbed the bags SL had gone ahead and got packed up as best she could with things I told her I needed. I turned right around and headed back. Just my luck we were under a fog advisory for the evening, and it was hard to see 20 feet in front of the car in most places between home and Fayetteville. I got back to the hospital around 10:30. David had already texted to let me know they took him up to a room and a nurse would most likely need to escort me up as elevators are not supposed to be used 9pm-7am. At least in the area where he was. I had to go in through the emergency entrance since the main entrance was closed by now. The very nice lady at the first desk in the foyer looked David up and found he was moved to a floor but it did not yet say which room. I texted him and he gave us the room number and she wrote me name sticker and said she would put me on the elevator up there herself. She said if anyone stopped me to say I checked in with her and it should be fine. I went up without issue and got to the room as they were just starting to give him another unit of blood. When he got to the floor, his hemoglobin was 6.8 so yet another whacky reading but they were readying another unit of blood. There were a few IV lines with more antibiotics and fluids waiting to start after the blood. Blood infusion took around 2 hours and we both were too wired up to sleep but were very tired. Stupidly forgetting what hospitals were like, we thought well, we will get settled and eventually drift off. That was not the case. I melted down 2 or 3 times during the night because we could not close our eyes before lights were coming on and people were in there doing this or that and giving him this or that. I am not a patient person but for some reason in the hospital (when I am not the patient) I can roll with things because he is where is needs to be for treatment. This time, I did him zero favors by having 3 perimenopausal mood swings and becoming very home sick. His fever spiked several times during the night, and I kept cold wash cloths and paper towels on him until it cooled down. This was preferable to him having to get the dreaded underarm and behind the knee ice packs he got in February.

Notes: Dos and Donts of Neutropenia

November 6, 2024

This morning’s surprise was David moving slower than usual and almost as if he were in slow motion. I took his BP and it was 94/54 which was very low for him. He could not stay awake, and even as I was taking his BP he fell fast asleep. Still dealing with the temp spikes, I called our primary Dr. W. He was able to see us and we got him up to speed on starting the chemo last week and the temp spikes, the trip to the ER, and now the newest development of this low BP. I got the opportunity to talk with him about the serotonin syndrome I had wanted to discuss with someone, and he listened intently as usual. He agreed it was a possibility and decided to cut back on some of the BP meds for the time being as well as one of the antidepressants we had just increased. Because an SSRI is on the list of medications that could react with the chemo meds and contribute to the serotonin overload theory. Dr. W, checked David out really well including his port site. He explained you would usually see indications on the skin of infection and there would be tenderness around the area. He said often times but not all, a culture would show there was an infection that could be traced to the port line. We went home and his BP was a bit low most of the day. He didn’t feel particularly well today and didn’t have much appetite. He did manage to make himself eat. I started reading about port line infections.

November 4, 2024

I just keep getting more anxious and worried about we are supposed to do with these temp spikes, so I messaged Dr. B today via the patient portal to update him on the weekend developments. I uploaded all labs, scans, notes, etc so he could review. We got a message back saying he reviewed them all and was calling in an antibiotic for David to start. Levaquin for 7 days. We are to keep the appointment for Friday.

November 3, 2024

David woke me up at 1am this morning and said he was sweating. His tshirt was soaked around the neck. I took his temp and it was 101.5. He took some Tylenol and went back to sleep. I stayed awake for an hour, so I could take it again to be sure it was coming down. At 2am, it was 98 on the nose. I realized I had forgot about setting the clocks back, so I was momentarily confused as to what time it was exactly. This morning around 8, his temp was 97.9 and it has stayed low while he napped off and on watching the Falcons. Around the time the game ended today, he told me he was starting to feel chilly and his temp was 103. Sigh. He took Tylenol at 4 and I just checked and it has come down to 101. He has not been confused, and I have been making him talk to me which is irritating him pretty good. I keep saying talk to me in sentences, so he is doing that as I am making these notes. He is pretty happy about the Cowboys defeat this afternoon. He says he has some uneasy stomach pain. He is able to urinate well. Doesn’t know what he feels like for dinner. He just said he seems to be doing pretty well making sentences and can he stop now? The hospital was to call if the cultures grew anything, and we haven’t heard from them today. It has been over 24 hours since we were there. We will be glad to know there is no sepsis but, also, now what? The oncologist’s office called Friday and rescheduled his appointment this week from Wednesday to Friday. A bit aggravating when you have this going on. I will definitely have questions on Friday.

As of 5:16, temp is 100.3 so hopefully it keeps coming down.

November 2, 2024

David got up this morning with a temp of 101.7. I gave him some rapid release Tylenol and he took all his other morning meds. Knowing we are supposed to call the oncologist’s office for temps over 100.5, we wanted to see if the Tylenol helped get it down before we called. After about 20 minutes, I noticed him making sounds like he was trying to talk. I asked him what he was feeling, and he was noticeably having issues making a complete sentence or thought. He expressed he was aware that he was having difficulty finding the words and there were long pauses in his speech. He never slurred and when I asked, he could tell me things like who he was, the date, who the president was, etc. I took his temp again and it had risen to 102.9. I called the oncologist’s office and waited on the doctor on call to phone us back. We got the call in about 10 minutes and after I explained what David was experiencing he asked how close the nearest hospital was to us. I told him about 10 miles and he said go on and go and get checked out for an infection. I asked if this meant being admitted because we would prefer to be admitted at a Piedmont Hospital if that was the case. He said he understood but did not want me to drive while he was confused and would be best to get to the local hospital for eval and then we could decide. He said they could call in and he would talk to them. David wanted to shower first so he took a cool shower and I packed a few things he may need since we didn’t know how long we would be gone. By the time we were leaving, he had more control over his speech and felt better. When we left home, his temp was 99.7. We headed out and got to URMC around 10:45 this morning. They triaged him and he went right for which we are very grateful. His BP was normal and heart rate was normal for him (it runs high) and his temp was 99 at that time. They asked tons of intake questions and assessed him for stroke or TIA due to the earlier confusion. A call was made to get him back to the ER and go for chest Xray and head CT to start ruling things out. Radiology came for him right away and he was gone about 15 minutes while I waited in the little room. Once he was back, the lab was there to take blood and one of the nurses got a bag of fluid going. The ER doctor came in to discuss what he was feeling and asked about the cancer and treatments. I rattled off the chemo meds he had this week and the doctor said he was impressed. He said they didn’t always get that level of info. I thought if he only saw all the notes I take. I guess I feel like it is my job because I cannot do anything else and feel useless if I can’t do something. I gave him a copy of the treatment orders, so he had all the dosages and phone number for Dr. B’s office. The lab came back to take more blood for a culture and also asked for a urine sample. All blood work came back normal even his WBC, which they thought may possibly be low, was also within range. His glucose was high (219)  but with the morning like it was, he didn’t a proper breakfast so was unable to take that medication prior to his meal. The culture would take 24 hours or so and the ER doctor discussed admitting him to monitor while we are waiting to see if there is sepsis. We asked that he call the Oncologist and discuss with him first. The Onc on call said since there was no clear indication of a source of infection and David looked and felt ok , that he could go home without antibiotics and we could monitor his temp using Tylenol and Advil alternately to control any fever. The ER doctor advised that we were to come straight back if the temp rose high again and especially if there were accompanying symptoms such as the confusion. He said they cultures were flagged and we would get a call if something showed up in them that warranted treatment. We waited a forever amount of time for the paperwork to go home and left around 4:20. His temp when we left was around 99 so it had stayed there without medication. David said he felt ok but was just ready to get home. Once home, he had some soup and tried to relax on the couch. He said he couldn’t get relaxed and felt agitated. He took his evening meds after he ate and started to settle down a little. I took his temp a few times and it was 100.1 around 6pm and then after Tylenol, it has hovered around 98.  He got really sleepy and slept a while on the couch while I updated the notes from today and started reading something I began a few days ago about Serotonin Syndrome. This sounds a lot like what may be happening since he takes medications that interact with each other and each creates additional serotonin. I don’t know if it is anything but the symptoms tracked for what he has been experiencing today.  I plan to bring it up to Dr. B or maybe Dr. W here in town on Monday. The hospital advised following up with Dr. W in 2 days anyway. It could also just be chemo fever that occurs following an aggressive chemo treatment. Been reading up on that too. Hoping for a better night and morning than we had today. Grateful for being home and that we feel we received good care today. I am starting to feel wiped out now.  It is amazing how long your body holds on to adrenaline when you have to kick into action. Why does time stand still in a hospital though?  

October 30, 2024

David felt ok today but not quite as good as yesterday. He had some pain that he wasn’t sure was gas or regular pain, and we both seemed to be moving through Jello trying to get out the door. We had a good drive over though and saw a truck with a smiley face on the back. I can’t help but see faces everywhere I look. Remember, it is a sickness. 🙂 We got to the office in plenty of time, but they were late calling him back to the Infusion Room. The nurse said they had a communication breakdown with the front desk and they weren’t aware we were there. His port ported nicely, the drip started dripping, and we jumped in to playing UNO hoping to pass the hour quickly. He won around 8 hands and I won 3 which is a pretty good day for me when I can beat a dirty, ruthless, Draw 4 hoarding Skip weasel.  Another couple sat down next to us and she asked me if we were from Thomaston. I said yes and then she asked if I was DeeGee. I said yes and I asked who she was. She told me, and I said it really was true that you cannot go anywhere without seeing someone from Thomaston, GA.  She worked with my aunt many years ago and knew me when I was a kid. We chatted a bit, and in no time, it was time for us to go. The nurses had decorated the room with Monopoly tiles and Monopoly money was strung from the ceiling. We learned last year while in chemo, that they choose a theme each Halloween, and everyone participates including the doctors. I said to one of the nurses to please tell me that Dr. B was dressing like Mr. Monopoly, and she said he was.  He passed through and he gave a wave, and I said we sure hated to miss that. He said to come on back over tomorrow. As funny as it would be, we think we will pass on riding over here 4 days in a row. We headed out for home. David managed to stay awake until Senoia when he got his lemonade from Chick Fil A and then gave up the ghost, put the seat back and went to sleep. I stopped at a Dollar General on the way home just to grab a few FULL SIZE (mind your business) candy bars in the rare instance we had some trick or treaters tomorrow. We have been married 25 years and only had maybe 2 kids trick or treat through the years. He said he wanted a root beer, so I grabbed one of those too. He took some anti-nausea meds when we got home because he was starting to feel a bit sicky. Maybe it was the chemo or maybe chasing a lite ice, extra lemon, lemonade with a root beer would do that to person…blarg . Then, he pretty much crashed out and slept soundly most of the night. I sampled some candy just to be sure it wasn’t poisoned or anything in case a kid stopped by tomorrow.

David’s shirt today: Nice Marmot. From the opening scene of The Big Lebowski. A nurse asked him about it and he gladly gave her an explanation of the shirt as well as the movie.. Fighting things that are inevitable vs. just letting things be what they are.. abiding. An idea with which we have become well familiar. “Strikes and gutters. Ups and Downs”

October 29, 2024

David got up feeling pretty good today. Remembering back to last year (by looking through my journals), chemo days were some of his best days. It is the recovery weeks that weren’t so nice. He said he slept all night and remembered having funny dreams but couldn’t remember what they were about. He said those were much better than the stress dreams he usually has. We didn’t have to be at the office until 2:00 today, so we were able to leave a bit later this afternoon. The sun shone on us the whole drive over and we talked and laughed and had a really good day. He was more animated than he has been in a while and said he felt pretty good. Since he was only getting one drug today, it only took about an hour and a half after getting him started. He wanted to try another Thai restaurant so we stopped there for early dinner. The food was pretty good. He wasn’t able to eat very much so we boxed up most of it. By the time we started for home he was starting to slow down a bit and was having some mild discomfort. He slept mostly on the way back. I could tell he wasn’t feeling as good as he did earlier today but was still better than most evenings go. He took his evening meds and the oral Dexamethasone we both forgot this morning. It is hard to remember regular things much less to take a couple of new pills for just day 2, 3, & 4. We will do better tomorrow. He asked me to see if he felt hot, so I took his temp and it was 99.7. He went ahead and took some acetaminophen and said he wasn’t feeling too well. I asked if he had pain and he said a little but not like the usual kind. He said he mostly just felt bleh. He wanted to hang out on the couch before he went to bed but didn’t feel like watching anything on TV. I turned down the lamp and turned on some classical nite nite music. We did that when he was in the hospital in February and it was really nice to just lay there and relax. I did some work and he was snoring pretty well in no time. He said earlier that it was a good day and he enjoyed it. I love days like that. These days don’t happen often, and I know they are fleeting, but I sure do soak it up during these rare times that he is feeling good. To hear him laugh like he did when the days were better is everything.  

Random things of interest lately: We had not been to the movies in a while and went to see the Joker Movie Part 2. We were 2 of 3 people in the theater on opening day so that should have told us something. We are big Harley and Joker fans and this movie was just disappointing. We finished Yellowstone as I may have mentioned, and are waiting on the last part. We watched 1883 and 1923 and started on Tulsa King and realized we may just be big fans of Taylor Sheridan. We would probably watch paint dry on a wall on whatever streaming channel if he wrote the script for it. Looking forward to his new series next month. Been watching more football and still don’t understand all the rules but glad the Dirty Birds and Kirko seem to be making David happy. David has been trying to write stuff for the blog but the brain fog just makes it hard to finish things. I keep trying to encourage him and saying it doesn’t matter. Just toss some words out. We (mostly me with him telling me how) have been working on a 1000 piece puzzle of vintage posters of the US National Parks. We got one of those puzzle boards that spins around and we (mostly me with him telling me how) have “enjoyed” sorting through tiny pieces that look identical to the other 999 pieces. I found I am missing one edge piece and do not believe I have it. He says it is somewhere in the sorted piles, and I just have to keep looking. It is causing me stress, and I told him he will need to just make me a piece to match. The whole board can slide under the couch so the cats can’t walk all over it and destroy all of “our” hard work.

October 28, 2024

We drove over to Fayetteville around lunch to make his 1:00 therapy appointment. It was cloudy and overcast and we felt the same. We did enjoy the changing color of the leaves along the way though. The colors are really starting to pop out now. We got a nice nurse who explained the treatment to him again and got him in the chair and readied the port for access. The port was a little stubborn but not too bad. She told him that he could stay accessed for the three days but would not be able to take a full shower. He said he would just have it accessed each time. She explained due to the hurricane damaging the facility in NC that makes the sterile and saline solutions for IVs, they were having to ration these so the Dex and Akynzeo would be pushed at a different rate that usual. We heard on the news on the way home that in this facility in NC that makes the sterile solutions is responsible for about 60% of the nations supply. It would take time for them to clean up the damage and they planned reopening in phases. Hospitals across the country are having to use rationing procedures.

David got as comfortable as he could in the recliner, and we settled in to wait the couple of hours. It was sort of weird being back in the infusion room and we only recognized maybe a couple of people from before. Oncology nurse maybe isn’t a job one tends to stay in long term?  Anyway, it wasn’t long before David was asking about the snack situation and rummaging through his choices for today. We played a couple of games on our phone that we could play back and forth, snacked, and broke out the UNO cards. He played pretty dirty today per usual saving up his Draw 2s and Reverses and those damnable Draw 4s he likes to strategically hoard until he is ready to UNO. Time ticked down and we were glad to be on the back side of the first treatment. He said he was starting to feel pretty yucky by the time we finished. By the time we got to the car, he was feeling a bit nauseous. He slept most of the way home and he wanted to get some hot and sour soup from the Chinese restaurant in town but wanted to stop at home first. When we made it to the restaurant, he said he was feeling strange. We got his soup and headed back home. He was sweaty and said he wasn’t hot but he felt hot so I took his temp. It was normal. He said he was feeling nauseous and “just not good”. He fell asleep on the couch before he even turned on Monday night football. When I checked on him earlier, he was fast asleep with the remote in his hand. We didn’t expect it to hit him so quickly and aren’t real sure what to think about it. I don’t want him to have to do this, and I kept telling him all afternoon. I tell him all the time I am so sorry he is going through this. WE are going through this. This sucks so much and it isn’t fair. No one deserves this. No one should have to decide to poison themselves in hopes of maybe having the possibility of having a chance to live a little longer. IT IS NOT FAIR.  We can do so many things now. We cannot even keep up with technology. The AI future is scary. They can transplant organs and have been doing that for some time. How is there not a cure for this? Just how?

October 25, 2024

We had a call this morning to go over the protocol and side effects of the upcoming chemo. Like before, David will receive Dexamethasone and Akyenzeo prior to each chemo IV in an effort to minimize the nausea and other side effects. He will also take the Dex for three days following the treatment. The nurse said the first day of the cycle, David will receive both the carboplatin and etoposide (VP-16) (around 3 hours). On day 2 and 3, he will receive just the etoposide (around 2 hours). At least we won’t be there for 7 straight hours like before. She explained they would monitor blood work closely as both of these meds would cause a drop in RBC and platelets. Not great news since his RBC is already low from these past months. This will make him even more tired and low platelets make you more susceptible to bruising. Nausea is a big side effect of these and she suggested peppermint, ginger, and avoiding spicy, greasy foods. Our old friends constipation and diarrhea may drop by along with lack of appetite. More neuropathy is expected (he still has some in his feet and fingers from last Fall) but there won’t be the cold sensitivity with these drugs. He may experience a metallic taste in his mouth from the carboplatin and she suggested some people find eating with plastic cutlery and drinking from only a glass to be helpful. He will be tired, and I cannot imagine him being more tired than he already is. The etoposide will cause hair loss more so that he saw with the last chemo. And yes. Hair loss does bother men too. She said it will start to come out around 10 days after the start of treatment and will start to return around 4-6 weeks after treatment ends. She suggested gentle shampoo (baby shampoo) and sunscreen will be even more important as his skin will be more sensitive. His mouth will most likely develop sores or ulcers. Also this was not something he had to be concerned with last time. She suggested a very soft toothbrush and non-alcohol mouthwash. We will be back to washing his clothes and towels separately and flushing the toilet twice with the lid closed for 48 hours following each last treatment day. Any fever over 100.5 and we are to call them immediately even after hours. Gloves to clean up any bodily fluids careful of the depleted immune system.  She gave us the dates for the next treatments and that wrapped up our chemo education.

It was a nice day, so we decided to put all that in the back of our mind, shut the laptop, went and picked up some lunch, and went to sit at the The Bluff by the Flint River for a picnic.

October 24, 2024

The nurse told him he didn’t have to have his port accessed today and could opt for a regular blood draw. He jumped at the chance to skip the port. He is so tired of having it act up and them having to work with it. He was happy to have labs like a regular person. We were also happy to see Dr. B today, and after chatting about his trip to Italy, we jumped right in. Hemoglobin is up 9.3 and Iron was “you have plenty of iron”. Dr. B said if we went by the book, the next step would be the Lonsurf chemo drug we discussed months ago, but he said he was about 75% sure it would not work. He said he didn’t have much confidence in it working when the FOLFIRINOX didn’t work last Fall. Based on the neuroendocrine features of the liver tumors that were tested in February, he suggested we try a chemo protocol for neuroendocrine cancer in hopes it may do some good toward shrinking the tumor and giving David some relief from some of the pain. He said if proved effective, it would help with the mets elsewhere in his liver and lungs as it was a systematic approach. He said we could start as early as Monday if David chose. David said we might as well get started as there was no reason to wait. Dr. B agreed. He said like before, lab work would be done regularly to determine his tolerances. He went ahead and had the scheduler get us set up for next week while we were there. This protocol will be carboplatin and etoposide (vp-16)  given three days in a row and then skip three weeks then repeat, etc. David will receive carboplatin and etoposide on the first day and then just etoposide on day two and three. He said we would need to have patient education but basically all the classic side effects were the same as before with maybe a few worse ones including a higher chance of hair loss with the etoposide than with the previous regimen. He said he would monitor the CEA level and our hope is that the CEA number will go down. We discussed the possibility of doing two rounds and then assessing the progress. We talked about pain and how that was going (not well) and Dr. B said David may have stable disease where the tumor in his colon isn’t getting any bigger but still presents problems. Not getting any bigger sounds good but going away all together sounds even better. If only….

Leaving the office David wasn’t saying much, and when we went to get dinner, he got increasingly anxious. We talked about how it felt different this time and there didn’t seem to be the optimism we had going into chemo last October. We guessed knowing now it didn’t work and there is a possibility this will be the same outcome. Of course, we are hoping for the best for him and don’t want to feel pessimistic, but things just haven’t improved yet and we would really, really, really appreciate a break for him.

It did dawn on me earlier this month that last year, we didn’t know if he would see another Fall or Thanksgiving and here we are about to start another November. We are certainly grateful for that. Later this evening, we checked the labs, and his CEA has gone down some since the last one in September. So maybe the Y90 did something. We are trying to be optimistic and hopeful for the liver scan on 11/20.

October 10, 2024

David saw one of the PAs at Dr. B’s office for his appointment this morning. He had labs as usual and she asked him how he felt he was doing since the Y90 on 9/26. He said he had been tired and experiencing pain in the lower abdominal area as usual. She told him she would send a message to Dr. B (who is currently out of the country) and ask about getting the ball rolling on the next chemo treatment we had discussed some weeks ago. She said she felt that would come following the liver scan in November (11/20). David’s hemoglobin was 8.3 today so it has come up a little since the iron infusion. He did not get an iron panel done today. We will come back in two weeks to keep a check on his numbers. She said we would see Dr. B during that visit. After the visit, we headed home for me to work.

David received a call from Piedmont saying the CT scan on his liver will be on 11/20/24. This scan will determine effects from the Y90 procedure.

September 30, 2024

We made it through Hurricane Helene unscathed but our Georgia neighbors to the south and east of us and some of the Tennessee and North Carolina mountain areas were not so fortunate. It has been distressing seeing the displaced people, animals, loss of life and livelihood, and especially the ones that have not been able to make contact with loved ones.

We got to the hospital around 7am this morning. David was not is a great mood as he was having a good deal of pain despite taking his pain medication. We both felt out of sorts and weren’t feeling very peoply today.  We passed a few people sporting Falcons gear and were glad they were represented this morning after their win yesterday. David was certainly delighted about it, but he always wears a Falcons hat even when they don’t win. I guess that is how you know he isn’t a fair weather fan. After getting hooked up to the IVs and whatnot, we spoke to Dr. K’s PA and then to Dr. K. He asked David how he was feeling and we talked about the procedure today. He said David would go for a scan in 6-8 weeks following this procedure to see how things were progressing (or not progressing at all if we are lucky). He said it takes some time for the inflammation of the procedure to subside and that was the reason for the wait on the scans. They came to get David at 9am sharp and said it would take about an hour. At the two hour mark, and hearing constant Code Blue and stroke announcements over the intercom, I was starting to become very nervous. The calls weren’t for him of course but my mind starts to stray to those scary thoughts when things are taking longer than expected. They wheeled him back to me around 11:10. David was wide awake and said the anesthesia didn’t seem as strong this time as far as making him drowsy. He said he was pretty much wide awake and bored while Dr. K worked away. He said there weren’t any complications, and that Dr. K was just doing extra things. He couldn’t remember what those things were called. I assume all helpful things. He said he could see the time and knew I would be sitting there starting to worry. So, he was worrying about me worrying about him. Once he was back, the nurse brought him a sack lunch (Ginger ale, turkey sandwich, SunChips, and diced pears). He was glad to get some food and something to drink. He was really bored and becoming fidgety. We worked a few crossword mini puzzles, and he watched Instagram Reels until they came to get him to take him to Nuclear Medicine for the scan to make sure the radioactive goodness was flowing in the right places. They also started the TR band pressure release process, so we knew it wouldn’t be too much longer after he returned from Nuc Med before we could leave. He was gone around 45 minutes so he had about 30 minutes of pressure releasing before we could think about packing up to go. With no arterial bleeding, we got the instructions we heard twice before, and I was dismissed to bring the chariot around to retrieve the patient. We grabbed second lunch at Chick-fil-A on the way through Senoia and kept going. He was sound asleep by the time he took his last bite and slept all the way home. I pulled under the carport and he was still sleeping. I woke him and asked if he wanted to go on to the pharmacy for all of the prescriptions or stay and he opted for the couch. He loves napping on that couch more than anything.  I got him inside and situated, and I think he was asleep again before I left the driveway. I picked up the meds and came home to catch up on work and this update. I woke him up around 7pm to take his evening meds and he went right back out. Now starts another healing process.

David’s shirt today: Football is Fun. (Dan Patrick Merch)

September 29, 2024

This made David happy. That is all. It was worth its own post.

September 26, 2024

David had an early oncology appointment this morning with one of Dr. B’s NPs. This was the first time meeting her and she quickly caught up to recent events. We brought along the labs from Tuesday, and she made copies to share with Dr. B. She examined David a bit and we found her to be quite thorough. She said she would discuss the visit with Dr. B and Dr. K since the next Y90 procedure on the right hepatic lobe is scheduled for Monday. He had some labs done today and his hemoglobin was lower than it was on Tuesday but it can take several weeks for the numbers to improve after receiving the iron. He also had a CEA (tumor marker) and it was much higher than we have seen it since the beginning of this. Of course, this is distressing and causes us to wonder if his liver is worse or the colon tumor is active again or both or has it spread even further. He has been experiencing increasing pain at the colon tumor site so this would not be a surprise, I suppose. Still, it is not something we want to see. We would really like to see the numbers trend in the other direction. I will repeat. None of this is fair.

David got a call later today from Interventional Radiology. The nurse said Dr. B and Dr. K discussed it and they would leave the decision up to David whether he felt up to having the procedure on Monday. She said he could decide the morning of and it wouldn’t be an issue to reschedule if he felt that was best. Both doctors suggested proceeding if he felt well enough. He has still been running a fever in the late afternoon and evenings, but he said he actually did feel a little better today after having the iron infusion.

It was pouring rain with the coming hurricane and our part of Georgia is under a Hurricane Warning today. Crazy times for there to be a hurricane warning in central Georgia. We were glad to make it home early. Some businesses were already announcing they would close early in the afternoon.

September 25, 2024

I checked in with Dr. W’s office around 11am this morning to see if there was news on an iron infusion. A nurse called back to say he had been working on the insurance since 8am this morning and told them it needed to happen before 2pm today. We got a call from the hospital around 12:30pm and the nurse said we could come on for the iron infusion. I had just got home from picking up pre-hurricane groceries during my work lunch so I threw the cold stuff in the fridge and we took off to town. It ended up being the same nurse we had back in June 2023 when he first got a blood transfusion and iron and he had that vasal vagal reaction and passed out twice. We reminisced about that day for a bit and all had a chuckle remembering how scary it was when they called the rapid code on him. Once the iron IV started and we were just sitting there, I told him we really didn’t know anything last June about what we were about to go through for the next 14 or so months. This little iron infusion was nothing compared to any of that. I kept him entertained for the two (ish) hours with today’s Wordle (he got it in two), the Crossword Mini, a big Crossword for grown folks that was too hard for us, and reading about pending Hurricane Helene whose path is projected right up through Georgia at a crazy speed. By the time the infusion was done, he was more than ready to get home. We got home about the time the bottom fell out of the sky and came a sho nuff toad strangler. Just the first of many inches predicted to fall in the next couple of days. He still didn’t have much of an appetite, so he opted for old standby chicken noodle soup and chased it with some cherry Jello. He said he was feeling queasy and a little yucky. His temp was 101.  We head to the oncologist tomorrow for an early appointment and home before any of the significant weather is supposed to be here.

September 24, 2023

We saw Dr. W this morning, and we mentioned the paleness and the other symptoms. He agreed he was pale and his heart rate was elevated in the office. His temp was normal. Chest and lungs sounded clear. Dr. W worried about his RDC, iron, and hemoglobin levels, and I told him what it was at the last oncology visit in August (10.1). It has hovered around there since the liver resection surgery in February. We also told him that the next Y90 treatment is scheduled for Monday, 9/30. He was very concerned that his levels may be low again based on the symptoms and how David looked, so he started him on a Z pack to try to take care of anything respiratory that was going on and took a blood panel to see what his numbers looked like. He said if needed, he would like to get David in for a blood transfusion and/or iron infusion as early as tomorrow.

We got the results in the portal and Dr. W also called this afternoon to say David’s RBC was low, his Hemoglobin was 8 and his iron was reading “undetectable”. He said he would talk with the treatment room at the hospital first thing in the morning and work on getting the insurance pre-auth done for iron and for us to be ready. He said he really expected his hemoglobin to be lower than it was given David’s symptoms and appearance, but it wasn’t quite low enough for a blood transfusion. It needs to be 7 or lower especially during a time of blood supply shortages. He said he would get the iron done outpatient or inpatient if necessary. He said we definitely didn’t want anything to delay the treatment next Monday if we can help it. He is such a great doctor and person. He is so caring and willing to go extra steps to take care of his patients. He genuinely cares about people. We are very fortunate to have been under his care for 20+ years now. Like clockwork, David started running a fever this afternoon and into the evening. He doesn’t have much of an appetite. He says he feels yucky. This thing just never lets up. Oh, his glucose was through the roof at 313 (usually runs around 140 for his diabetes) so he gets another new pill to help with the Metformin he is already taking. The trick is to not give something that will cause him to lose too much weight. We aren’t sure what spiked his sugar, but it could have been the little non-birthday-birthday cake we ate over the weekend to celebrate our blissful 25 years of togetherness or the cup of orange juice he drank with breakfast. Yes, we know better, but he loves orange juice greatly, and we weren’t really thinking about the timing.

September 19-23, 2024

On 9/18, we celebrated our 25^th wedding anniversary. This past weekend, we went up to Blue Ridge for a few days. David has continued to be very tired and unable to do very much. The 3 hour ride was ok and he slept most of the way once we got out of Atlanta. On Friday, he woke up with some congestion, and later in the day, he started running a fever. It got up to around 101 and he took some acetaminophen and it came back down. He has continued to feel more tired and look paler over the last week or so. He has seemed to start with an elevated temp around midafternoon each day and it usually fluctuates during the evening. It has been controlled with a few Tylenol but it starts again the next day. His BP is normal but his heart rate is very elevated (120-145 sitting). His pulse ox was fluctuating between 90-95 with no exertion. Once, this weekend, he was bending over looking at something on the floor and he got lightheaded and fell forward. I called to see if he could see our primary doctor on Tuesday when we were back in town just to see if we could figure out what was happening. He has started becoming a little breathless with very little activity. I just says he doesn’t feel well. I was starting to be concerned about something respiratory or possibly pneumonia. I was even worrying about liver issues and kept checking his skin for jaundice or something that would indicate if there were liver issues. The whites of his eyes were always very white though. It was a long, tough weekend going between trying to distract, entertain, and worry.

Every evening, the same deer family came by to visit. There are always bears on the Blink cams but we haven’t had the luck to see one yet. We got the biggest kick out of this little deer stamping his little hoof looking at us through the window.

On the way to David’s appointment today, he got a call regarding the next part of the Y90 procedure. He is scheduled for Monday, 9/30. We will be back at Piedmont Fayette at 7am. This part of the procedure will treat the right lobe of David’s liver. It is the biggest portion to treat, and as told to us at the last procedure, is a little rougher on the patient than the last one.

September 9, 2024

Today we went to Atlanta to meet Dr. J, the supportive medicine doctor, in person. He explained that when prescribing opioids, the doctor is required to see the patient regularly and in person throughout the usage to verify the patient is tolerating the drugs well and the dependency has not become an issue. We were hoping to add another regular doctor visit to our schedule (cue eye roll). He reviewed David’s pain levels and still believes he has pain originating from two locations which also refers pain to other parts of his body. We discussed other pain management options again such as using nerve blocks to help instead of being pill dependent. We will need to have a consult with another IR doctor that performs those in order to get more information on managing the pain that way before we make that decision as there are risks to those also. Yay, another doctor visit. He gave David a short little exam, made the next appointment, and we were back on our way home without hitting too much traffic.

We stopped at Texas Roadhouse for an early dinner on the way home. We only had to sit through three renditions of Happy Birthday being sung to other diners. We had a good dinner otherwise, and I got David safely home just in time for Monday Night Football.

September 7, 2024

We are 12 days post Y90 procedure. A few days after the procedure, David ran a bit of a fever (99-101.7). It never got over 101.7 and didn’t stay at that level for long. He has experienced some off and on pain around his liver area but with the extended release pain medication for the lower abdominal pain, it was hard to tell if the liver pain stuck around for long. He has been extremely tired. He stays tired from the low hemoglobin and just generally fighting cancer but this has been a different kind of exhaustion. He has trouble staying awake during the day and gets really tired pretty quickly just being up just moving around even to walk out and get the mail. I have noticed he has been pale most of the time. He has continued to experience what seems to be increasing pains in his lower pelvic area. Sometimes, he literally doubles over with it. It is so hard to see him like this. There isn’t a thing I can do to help when he is in the grips of pain like this except bring him things and try to distract him with nonsense. He has been wrestling with focus and concentration lately and of course depression. The depression seems to be a bit better at times since starting medication last month. I have tried to coax him out with me to run errands a few times in the past two weeks but he hasn’t really felt up to it. Taking a shower usually wipes him out. He is eating fresh veggies and fruits as well as proteins daily and his appetite comes and goes a bit but he always manages to eat. He never seemed to experience any rage type issues from the steroids, so we guess we skirted by that particular side effect.

We almost lost our tomato plants to Fall Army Worms, but we have managed to fend them off as humanely as possible and the plants have bounced back and are giving us more tomatoes. That has been a nice treat for these final weeks of summer. We are looking forward to fall and we caught a nice glimpse of it last week during a few false fall feeling days (say that three times fast). It didn’t last but it will come soon enough. We both enjoy the season and won’t miss the hot, humid summer days. Although, in Georgia, it somehow seems to stay humid mostly all year.

David and I got a bit obsessed over the Olympics and followed that for a couple of weeks. We have watched a good bit of the Paralympics and have enjoyed being inspired by so many fascinating, and determined individuals and teams. We watched the Receiver football series on Netflix and it was pretty interesting. I recommend the Quarterback one also. We saw it last year. Peyton Manning produces some good stuff from the perspective of someone that knows very little about the game. We finished up watching Yellowstone and moved on to 1883, so we are transitioning from our cowboying season to our Oregon Trail season. I figured we would be done with that one season of 1883 by the weekend and could start 1923 and maybe get a good chunk of it knocked out before the free trial of Paramount+ runs out. That is my Olympic talent. Planning and watching stuff before the free trial runs out and also turning on and off streaming services according to what we are watching so “the man” doesn’t keep me down under his streaming boot heal. I swear. Cable and satellite didn’t cost as much as everything being its own streaming service. But just as I was adding up the episodes in my head, I was informed that the dreaded day arrived and just through all my plans on the floor and stepped on them with muddy feet. Football season started Thursday night. Then another game on Friday I was told. When in the Sam Hill did the NFL start playing on Friday night? And what do you mean from Brazil? WHAT IS HAPPENING? I was also informed that I could not count Sunday as a day of episode watching as it would be all football all day. He is so excited. Let the couch naps, snacking, and random shouting at the Falcons begin. What can go wrong with a new head coach and two new quarterbacks.

One of our toilets stated running off and on randomly, so, today, David told me to turn off the water at the valve, drain the tank, and showed me how to take off the toilet flapper thingy and sent me to Home Depot (alone) to pick up a replacement. He showed me how to measure it then also told me to take it with me. I was dumbfounded honestly. Like in my purse? He said or a bag or something so I could match it up if I needed to. So me and Korky Ultra Fits All Types (insert trademark) went to HD in search of his replacement. Why in cheese’s name are there so many toilet flaps? Why are there different colors? Why does one come with some type of glue tube? Why are toilets not the same? This particular one is a 1960s good old American Standard super duty model original to the house when it was built, so apparently we have to get the “universal fits all types” kind to hold water at bay flap. Additional question, why are so many packages taped up and brought back and hung on the racks? I guess I am not the only one that does not understand toilets. I finally found one that was unopened. I couldn’t imagine bringing home one that had been in the back of someone else’s tank even if just long enough to see it didn’t fit. I also needed to get some trim nails. An even more daunting task standing clueless in front of the nails. WHY ARE THERE SO MANY DIFFERENT TYPES AND WHY IS THE LETTERING SO SMALL WHEN THEY ARE HUNG 17 FEET IN THE AIR? A text came in that mentioned light bulbs, and I went over there and decided nope. I was way too anxious over rubber flaps and sharp metal hardware to be making light bulb decisions. I really do miss the regular bulbs. Just grab a pack and go. Back when no one expected them to last 14 years like the ones now claim but surely do not. Now there are shelves of them. All kinds. Anywho, I arrived home victorious with Korky Ultra Fits All Types II and a pack of trim nails, and honestly, there wasn’t as much fanfare as I expected there would be. I was instructed to make sure the chain was the proper length and to place it back on the other toilet part thing. I adjusted the chain hook thingy and put it in place. I turned on the water and the tank started filling. I went to ask the Foreman how would I know it was working to which I was informed water won’t leak out past it. Ok. And with a slip slap of my two hands, it seems I passed that test, and now that I am a fully licensed plumber, we won’t be startled awake in the middle of the night with the sound of the toilet water automatically coming on but evidently that still remains to be seen as told to me by the Foreman.

Next up, the low tire pressure sensor light on the car. Becoming a certified plumber and mechanic all in the same week is exhausting.

August 26, 2024

David’s Y90 procedure was scheduled for 11am this morning, so we had to be at Piedmont Fayette at 9am. David was in a good bit of discomfort during the night and was quite restless so neither of us slept very well. We got checked in and it didn’t take long to be called back to the IR suite where we had been two weeks ago for the first part of the Y90 mapping procedure. We were greeted by the same nurses we had previously. It was basically the same process as the mapping but this time with real radioactive materials. After putting on the hospital gown and popping on the party hat, David was hooked up to all of the monitors and we sat to wait until it was time. We heard all of the morning gossip from the nurses’ station and who was having what for lunch and what was done over the weekend. The same NP we spoke with before the mapping came in to explain today’s procedure. He told us that it was basically the same except for the tiny little fact that following the procedure, David would be emitting radioctiveness for the next two weeks. Say what now? So apparently, radioactivity is detected from the patient up to two weeks following Y90. He explained that there are no studies that prove any harm to other people, but they have to make us aware because it can be detected. He cautioned about being closer than 5 feet and having only brief hugs. He said you would not want to sleep in the same bed or have anyone sitting closely next to him for around two weeks. Perhaps they may want to mention these things before the morning of the procedure. Like, you know, maybe I needed to know to bring bungie cords to strap David to the roof on the ride home. NP also said he would feel pain after this procedure (hopefully) as the cancer dies. So, I guess we are hoping for a good bit of pain? I asked if the radiation would pass through him like chemo and he said not in the same way, so we wouldn’t need to keep and wash his towels, sheets, clothes separate like with the chemo. He said the first week was the strongest of course with decreasing amounts each day. You don’t get the full grasp of a procedure until they are discussing your radioactive half-life with you. David could expect to feel some extreme tiredness and some fever was to be expected as his bone marrow will be working overtime to make more white blood cells to fight off infection. We should watch his temp that it doesn’t go beyond 102 in which case we need to call them asap. He also mentioned that David would need to take some steroids following the procedure and he may (and notice the quotation marks) “experience some roid type rage at times”. Um…what? Yes. It seems some patients have reported having rage feelings while on the steroids following Y90. We both had thoughts of another person with a green alter ego who has some tiny rage issues and who also was radioactive. Boy! Don’t these days just get better and better?

Dr. K stopped by next to check in and explain he would treat the left lobe of David’s liver, and, in around 4 weeks time, he would invite him back for another party and treat his right hepatic lobe to another isotopic cocktail. He said doing the entire liver at the same time is just too much for patients and he usually starts with the left to “ease them into the procedure”. He said the right lobe would prove to be a bit more rough recovery wise. Our nurse popped back in to check on things and she told us that Dr. K was the best doctor for this and people were coming from all different states for him to work his interventional radiology magic on them. We really liked Dr. K from the start and we were particularly comforted to hear this. She said he was very efficient and so humble. In our short experience, we found the same to be true. The NP had five prescriptions for David so when they came to get him this time, I decided to go grab lunch and see if I could get them filled in case we didn’t make it back home in time today.

Why. Is. It. So. Difficult. At. Retail. Pharmacies? I found myself at another chain pharmacy, and while not quite as bad as the one I recently dealt with at home, they also did not have everything I needed. I went ahead and dropped off the steroid and antibiotic scripts to be sure we had those to start today and called our regular pharmacy to make sure I could get the other three at home. No problem there so I just had to wait on the two at the retail drug chain. How long? With a dismissive wave, the lady said “oh, an hour and fifteen minutes” I just recently caught an old clip of a stand-up comic, Sebastian Manicalco, talking about the same pharmacy so this was in my head standing there alone with no one else in sight. I was like “it is right there!” I know my pharmacist friends have a different take from their elevated vantage points but this bit was so spot on for my experience with these big retail drugstores.

I grabbed a quick lunch and sat in the parking lot and answered some work emails.  Before I got lunch sorted out, the hospital was calling saying David was back. The lady calling said to let the Imaging registration desk know I was out there and someone would come and get me. I ran back to the pharmacy to see if the scripts may possibly be ready (it had been around 55 minutes).  They told me they were just finishing them, so I took the compulsory walk around the store. Finally got checked out and headed back to the hospital.

Back at the Imaging desk there was a long line. After waiting, impatiently patient, I relayed the message I was given. She looked at me and said “let me just make a call”. The first person she called said to call another number. The second person said they would be right out to get me. I was told to have a seat and wait. Well, at the 15-minute mark, I decided to get up and remind the desk I was there. Obviously, no one back there had anything else to do except open the door for the wife of the radioactive patient behind curtain #8. About that time, the door opened and one of David’s nurses stepped out to call someone else and let me follow her back inside. David was sitting up and had eaten lunch and was feeling ok. Like the mapping procedure, he was given moderate sedation but was basically alert during the process.  He had another TR band and would have air released to check for arterial bleeding a few times before we could leave. The nurse told us she started out her career in heart catheterizations and how they always went through the groin (artery) and how patients would have to lie flat on their back for at least three hours after the procedure. Anywho, David had just come back from the Nuc Med scan which shows where the radiation went and how much shunted to the lungs, etc. These things are all measured in the reports of course. David wanted his iPad, so he scrolled around on it reading dad jokes to me. Some of them got us chuckling and that was a good feeling seeing him laugh. We don’t do that so much anymore. This has been one of the many hard things about this whole unfortunate journey for me. A slowly crumbling foundation of what made us, well…us.  A sense of humor, that up until around the time things started going poorly with chemo, we thought was resistant to anything.

They paroled us just shy of 2:30pm, and I went for the car while they brought around the requisite wheeled steed that would relinquish him back to my care. I cargo strapped Dr. Banner to the rooftop like a canoe, and we drove home.  

I deposited David at home to radiate on the couch and went into town to secure the rest of the pharmacological treasures and possibly some soup of the eastern Asian variety. No problem at our hometown shop getting what we needed and grabbing David some hot and sour soup. He always goes in to pick up the Chinese food, so I asked him what I needed to say when I went inside. He said just to say the order number and to bow when I say it.  Luckily, this isn’t my first bumpy ride on the turnip transportation apparatus. You always bow first. (Disclaimer: no harm is intended by this insensitive mockery of a fine and respectful Asian cultural tradition which tends to be more Japanese in nature. The mockery was more about my own ridiculous social anxieties and what silly things I make up in my head, and, more importantly…how my adoring life mate capitalizes on that). He ate his soup, took his 6 steroid pills for today (yes I said six), and fell asleep pretty quickly.

We are hoping for the best possible outcome for the destruction of the existing tumors and that the cancer will stop spreading and continuing to grow. At the very least, we hope to slow this thing way down and get it managed, so he can have some semblance of quality of life for the time that is left for both of us.  

But for this immediate moment, we just want a Geiger counter…

David’s shirt today: EFFORTING (a Dan Patrick shirt)

August, 20, 2024

It has been 4 months since David finished radiation and it was time for a follow up visit with Dr. W this morning. He was very glad to see David and commented that he thought he looked really good. He said he had followed the progress and was interested that he was having the y90 procedure and would be hoping everything went well. He said he participated in a few of those during his residency and found it interesting. He confirmed the tumor in his colon seemed stable at least it was not worse and although there was significant shrinkage of the tumor he said he was not confident that he got all of it “killed” and there was a good chance there were some cancer cells still there based on the thickening of the colon wall. He said cancer cells or radiation scar tissue but either way it looked as if something was going on there. We knew this but I guess hearing it again just brings it all back. He said the liver was the main issue and he was glad we were headed in the y90 direction. He asked about David’s pain and mentioned the lung nodules. He said those would be no problem to treat when the time came and also he told him if he ever felt a different pain in his chest area or elsewhere to let him know. He said sometimes cancers move into the bones and he said this was also something that could be treated without problem. He said bone radiation could be done even while dealing with other issues. He said he didn’t want him to be uncomfortable if it was something he could treat easily. I asked Dr. W about cancer centers and if he had any experience with them. He said no, but if it were him, he would wait until all options were exhausted here because we had a great liver team. He said it may not be a bad idea to start checking with insurance on approvals that would be needed and also travel expenses. He said expenses would add up pretty quickly especially if things were not covered in network. He mentioned MD Anderson and also said Mayo Clinic would be ok as long as we went to the main hospital and not a satellite location. He said he wouldn’t do a branch location for something like this. He was very attentive and we appreciate his willingness to help when he can. He wants to see David in another 4 months just to check in. We left another doctor’s office this week feeling discouraged and again confronted with an unfair reality. It is the same with writing this blog. We just relieve it over and over, so sometimes, I get behind updating because I just can’t go over it again and still function in the daily routines of life that just keeps rocking on no matter what.

August 19, 2024

We saw Dr. B this morning. He walked in asking why David did not have an appointment yet for the y90 procedure and wondered what the hold up was on Dr. K’s end. David told him he had the mapping done the previous Monday so Dr. B said he would call Dr. K after the appointment to see how soon we could get this moving. Discussing the PET scan report from Friday, Dr. B said it looked as if most everything was in David’s liver. He indicated the spots in his left lung were “insignificant” at this time. He talked again briefly about the Lonsurf chemo option but he said he was now more inclined to try a chemo protocol for neuroendocrine tumors to see how it responded. He bases this on the pathology of the two tumors that were resected in February. Being that they both had neuroendocrine features. He said the scans indicated that the tumor in his colon is still stable. We talked about the pain David is experiencing and that we scheduled an appointment to see Dr. J on 8/26 in person to discuss how the extended release pain medication was working. I asked about the larger cancers centers in the United States and what resources they may have to offer that we couldn’t get locally. He said basically they offered major surgeries when applicable and clinical trials. He explained clinical trails were options but that only a small percentage of the drugs ever receive FDA approval for treatment. He said so many just do not show enough promising benefits. He said a few places in the U.S. had started to bring back an old treatment from 25 years ago. Hepatic Artery Infusion (HAI) Pumps are being prescribed as treatment again. He said Memorial Sloan Kettering in New York was specializing in these and he had a patient that went there and had one implanted. He said a device is surgically installed near the liver and administers chemo directly to the liver. He said results following the first scan are usually very promising but subsequent scans reveal a downturn in progress and the cancer tends to reoccur. He said as was the case with his current patient. He said right now, he was just not impressed with the outcomes verses having to have something surgically placed in your body and then removed once the chemo was given. At least this gave us something to read about and consider. He said there was one doctor doing the HAI pumps at Emory. He said Emory also offers proton therapy but that wasn’t something you could do to the liver. I told David I was glad I did ask and that I was still interested in discussing MD Anderson in Texas. He said he would consider once we see how his liver does following the y90 treatment.

Before we made it to the car, David got a call from a Piedmont scheduler letting him know the y90 procedure had been set for Monday, 8/26 at 11. We would need to be at Piedmont Fayette by 9. Since this was the day we were to see Dr. J in Atlanta, we went ahead and rescheduled that appointment for 9/9 which was the next available date.

We headed home. We both felt pretty down. It wasn’t anything we didn’t already know liver wise, but it was really the first time we just didn’t get a good feeling from the visit or from Dr. B. It seems like there are lots of treatments options for cancers everywhere else except for liver mets.

David’s shirt today: Sometimes I get off on a tangent.

August 16, 2024

We are so tired right now and David is asleep in his favorite spot on the couch. I decided to update the blog journal while it was still fresh and I was still processing it and I wouldn’t have to bring it back to mind in a few days when I get around to writing something. We got up around 5:30 this morning to shower and head over for the PET scan. David could not eat before the scan and decided to hold off on his meds as well because one of the BP meds he takes tends to raise his glucose a little. At least that is what we suspect from all of our unbidden knowledge of these experiences. We both slept ok although he got up several times during the night and said he was having some pains and difficulty urinating. He did take another one of his Flomax which Dr. B has told him he could do, and he said it seemed to be helping by the time he got up for good. We checked out and made it to the imaging center by 7:30. As we got off 75 on to Howell Mill Road, we got behind a white-haired gentleman in a little white convertible. Top down and flying along at 7:30 in the morning. He pulled into the parking deck ahead of us and we ended up in the imaging suite around the same time. He was dressed in shorts and a golf shirt and had a bit of a pep to his step. He chatted with the front desk person and then, when he was called back, we heard him telling the tech that he “was doing great for someone of 86 years” I told David I wished we knew how to relax like that and just let things be. Top down at 7:30 in the morning coming for a scan that would be a herald of possibly more discouraging news. He agreed and said it was definitely preferable to the anxiety we continued to feel over this thing.

I like going to this place for his PET scans because they allow me to go back to area with him. There is a little waiting area that overlooks the interstate where I wait each time. I guess I feel better knowing I am right outside the little room where he has to wait after receiving the radiotracer and then right outside the room where they do the scan. I never talk to him but I do see him coming in and out and that is pretty damn comforting when the other half of your soul is having any sort of procedure like this done.

The tech called him back, and so I got up as I usually do. She told us that I could come back for a few minutes while she explained the process but that she would need to walk me back out to the main waiting room as they did not allow visitors back there anymore. I know David saw the panic on my face, and we both sort of said at the same time that I was always allowed back. She was very nice and you could tell she was uncomfortable but she said they couldn’t allow it anymore. Why does it seem like every thing is against us? Like every little thing. And I know it isn’t. I know I can enumerate a litany of blessings right now but still…it meant something to both of us. At any rate, she took us into a little lab area and explained the process we already knew. She was ready to return me to the waiting room and I asked if I could stay to see what his glucose level was. She said certainly and took his blood. It was actually pretty high for him at 173 and I could tell he was panicked. She said it was all good because it just needed to be under 200. I saw the relief immediately when she said that. So she walked me back out and awkwardly said, she was sorry I couldn’t stay and we seemed like nice people. She told me and later David said also detailed to him, how recently there had been a rash of people who would come back with the patient and go in and out of the room with them and keep them talking when they were supposed to relax and be quiet. She said they also would come and question the techs as to how long it was taking and their person had been waiting too long. This is amazing to me because I have been back there 4 times now and never has there been anyone but me and I would never think to interfere. Once again, a few ruin it for the many. She told David later that maybe they would be able to relax that rule again and allow a family member to come back and they just didn’t understand what was going on with people acting in this way. I spent my time in a corner working on writing and just dreading the coming report.

Around 9:15, David met me in the waiting room and we went to the car. I had him a snack ready since he had not eaten and we headed out for home. We decided to stop for an early lunch when we got closer to home. On the way, of course we got the report.

PET Skull base to Thigh

Multiple hypermetabolic hepatic metastasis have increased in size and number compared to prior. Clear enough. The liver tumors have increased in size and number. Today’s scan was compared to the last regular PET (without Dotatate) from 9/23/2023 so we knew about most of these. We are not sure right now how many are actually new since July. Today’s PET was also compared to the CT on 7/10/24. What we do know is they are still growing. This is discouraging and not what we wanted but it is not surprising since there has been no other treatment since the three were ablated. It would basically take a miracle at this point to stop the growth without any intervention. We are not opposed to accepting one of those miracle things.

Hypermetabolic left upper lobe pulmonary nodule is suspicious for metastasis. This is the lung nodule that appeared on the May scan and is suspicious as we knew but when I look back at the scans, it appears to be the same size. Today’s report does not mention a current size on this nodule.

There is a new 3 mm pulmonary nodule within the inferior left lower lobe and it is suspicious for metastasis. This is a new nodule and small in size. I believe I read once that nodules are considered small if under 9mm. Of course it is suspicious due to the situation we are in. Remembering the lungs are the second place where this type of cancer usually spreads.

Diffuse uptake throughout the bowel can be seen with Metformin use which degrades evaluation of the rectum. On noncontrast images of the rectum demonstrates irregular wall thickening and perirectal fat stranding which may be inflammatory or posttreatment related. They are attributing not being able to interpret the scan around the rectum clearly due to the Metformin effects. This is his diabetes medication and apparently this is common to have this sort of activity. I did read that Metformin causes significant amount of increased FDG uptake in the colon and sometimes to the small intestines. We have not seen this mentioned before and will discuss with Dr. B Monday. This one is also disappointing because we need to know what this *&@$ mothership tumor is doing. And this didn’t tell us much. The wall thickening can mean several things as we first learned at the start of this journey and in this case we know it is malignancy and as I have read as it relates to fat stranding it can also mean a wide array of things depending on the degree of stranding verses the degree of wall thickening. Like the radiologist stated in the report, it could be inflammation or post treatment effects and the inflammation sensation is what David describes with the abdominal pain.

On the bright side, the rest of the scan showed no abnormalities. Vessels: No aneurysm. Adrenal glands: Normal. Kidneys: No focal mass lesion or hydronephrosis. Bladder: Diffuse wall thickening likely secondary to radiation cystitis. Reproductive Organs: No acute findings. GI tract: Colonic diverticulosis without inflammation. Peritoneum: No free fluid. No free air. Lymphadenopathy: None. Soft Tissues: Postsurgical changes of the abdominal wall with low-level uptake favored postsurgical. MUSCULOSKELETAL Bones: No osteolytic or osteoblastic lesion. Extremity Soft Tissues: Normal.

After all of that, we got lunch at El Charo because how can chips, salsa and cheese dip not lighten your mood for a little bit. We picked up our car at the body shop. We unloaded our stuff from the rental and dropped it off as well. We are so happy to have our own car back after three weeks of separation. The rental place secured me a nice replacement for the time, but it makes me nervous driving a vehicle that belongs to someone else.

I am not ready to fall apart, yet, today. I tried to sit here and calmly break down this information in a scientific and realistic way. I went back and forth between scans until my eyes were dry. I know what every single one of them says anyway. We often talk about if it would be better to not see these reports and just have a doctor call you up or see them in the office and they tell you the parts they think are relevant. Maybe we can have too much information, and maybe I spend too much time trying to find the answers to unsolvable situations instead of just being able to trust that what we are being told by multiple doctors and what we are choosing to do is the right thing.

I am tired right now. My mind is racing. I just looked over at David and he is still doing his best Sleepy the Dwarf impression on the couch. It is weirdly strange that I used to stop and watch SL sleep when she was an infant. Sitting very still and holding my breath until those couple of seconds passed, and I could be sure she was breathing by catching the slow almost imperceptible rise and fall of her chest. I do the same with David now.

I think I will just sit here in the quiet with him and just be for awhile.

David’s shirt today: Quirks and Features with Noodle the Dog https://en.wikipedia.org/wiki/Doug_DeMuro David has enjoyed Doug’s car reviews for a long time. He is on YouTube https://www.youtube.com/channel/UCsqjHFMB_JYTaEnf_vmTNqg

August 15, 2024

David has a PET scan at 7:45 on Friday morning at Piedmont West in Atlanta, David wanted to stay in Atlanta tonight so we wouldn’t have to be up so early and get caught in Atlanta traffic on the way. This afternoon, Dr. B’s office called and said there was a cancellation and David could come on Monday and see Dr. B if he wanted to change his appointment. David was glad to do this since the next appointment wasn’t until the end of August. We are both glad to be able to speak with him following the PET results.

We left for Atlanta after I finished work today to spend the night a few exits up from the imaging location. We usually stay at the little Holiday Inn across from The Battery at Truist Park, so we lucked up and were able to grab a room there easily since the Braves are on the road today. It is also the same one I used to go back and forth to shower and change clothes in February when he had liver surgery. It is a clean little hotel and the staff are very friendly. It gets sort of crowded with late home games and construction crews that stay during the week, but it feels like a relatively safe area.  I had built up some points from the February stay, so we got to use those for the night. For a regular PET scan, your blood glucose cannot be over 200 before the scan (Piedmont tells you 160). This is because a small amount of radioactive glucose is injected into a vein so it will naturally increase your blood sugar. The PET scanner rotates around and makes a picture of where glucose is being used in the body. Malignant tumor cells show up brighter in the picture because they are more active and take up more glucose than normal cells do. Cancer cells love sugar! Anywho, David is diabetic so this increases his already overdriven scanxiety because if your sugar happens to be over 200 (they told him 160 but I told him everything I read says 200 but he said they told him 160 so that is the magic number…) then he will have to reschedule the test. We stopped at Cracker Barrel on the way and he ate grilled fish and green veggies and no other carbs in hopes of keeping his sugar lower. We ate in near silence which is unusual for us, and I knew he was feeling bad and also very nervous, but it was uncomfortable and all I could do was sit there and think “why us” and “it wasn’t supposed to be this way” and my favorite mantra that does absolutely nothing “it isn’t fair”. It is hard to explain to someone who may not have experienced this but while you may expect bad news, you just don’t welcome the feelings that will come with hearing it. The pit in your stomach, then the sensation of your stomach falling away from you as if being on a steep roller coaster that just started the rapid decent, and then the rising feeling in your chest that you will be sick but the sick never comes. The sensation just stays in your chest or your throat and attempts to choke you until the next phase of stinging in your eyes that you know once started, will not be controlled.

Anywho, we started binge watching Yellowstone recently and we have just fell in love with the scenery and characters and he spotted a Yellowstone coffee mug and had to have it. He collects coffee mugs and has so many they have spilled over (ha! pun) into other rooms of the house. I know we are behind, and I tried so many times to get him to start the series with me but he wasn’t into it. I asked him to watch the first episode with me and if he didn’t like it, I would just watch it alone. He was hooked about 15 minutes in although he would argue it was more like 16 minutes.  We are basically like any Yellowstone meme you have ever seen, Season 1 you are a casual observer like ok, ok, I see you there horse rider people. Season 2 you are drinking coffee and it is pretty much channeling Rip like “let’s go to work”. Seasons 3-5 you are wearing western wear, a cowboy hat, have a rifle within an arm’s grasp and thinking about moving to Montana with your cows and horses while you walk around thinking you can solve all of your problems by being like Beth.

We made it to the hotel and unlike previous times, we made it to the room with our couple of bags and I didn’t have to make sixty-seven trips back to the car. Later, we talked about realities and that we knew the last CEA marker was elevated and he had not had any other treatment since the three ablations so it would not be surprising to have more uptake (more cancer). The fear we have is the increasing abdominal and rectal pain he is having. Is it growing again? Is it active? How much worse will it be? You think all of these things while trying to remain positive and hope, pray, plead, and whatever else you can do to reassure yourself that there is still a possibility it could not be worse, and we will handle it whatever it is. I cannot accurately describe the constant thought processes we go through daily and the extreme stress we are continually under. It clouds our minds. We cannot think clearly and everything is foggy and worrisome. So, while we hope with every ounce of our being, in the back of our mind, we know what is also probable and don’t want to acknowledge it because once we do, we feel like we are giving in and then it will take us. There wasn’t much on the satellite channels, so we ended up watching a couple of Gunsmoke episodes and fell asleep to Marshal Dillion and Miss Kitty and the sounds of people opening and closing doors down the hall.

August 14, 2023

We headed over the Fayetteville early to get the prescription. David did not feel like riding but he felt bad about my going over by myself, so he decided to go with me. He slept most of the way there. I went up to the 4^th floor and got the prescription while he continued his 2024 Colorectal Tour of the Restrooms of the United States, covertly placed some frogs of happiness at the hospital, and we headed back to Thomaston. As the old Mandalorian saying goes…this is the way. We were both so sleepy, and he immediately went back to sleep. I struggled with staying awake all the way home. I had an audio book to listen to but couldn’t quite get interested enough. I stopped at Chick-fil-A in Senoia and grabbed a Coke for the caffeine and a sandwich for the tummy. David woke up long enough to say he wanted a lemonade (lite ice and lemon) and was out like a light switch after. Fun fact: Chick-fil-A and Big Chic lemonade are his favorites. He was still sleeping really well by the time we made it back to our road, so I opted to continue to town to get the prescription filled. Long story short, we went to 4 pharmacies like crack heads trying to score. By now he was wide awake and patiently but uncomfortably waiting in the car as I tried place after place and was told the same thing. They didn’t have it. I did find out that someone had the meds, but it was brand and our insurance was apparently requiring generic. Sigh. He was so ready to go home, but he was down to his last dose and would need something soon. He honestly doesn’t take that much and it is a relatively low dose but it is heart wrenching watching him in pain, so again, sounding like a complete fiend, I asked about the cash price if we just bought it outright. $400. Jeez. How does anyone without insurance afford anything? Anyone with insurance has a hard enough time. If you don’t know about opioid prescriptions, you cannot just say oh well.. since I cannot get this one then give me another prescription for something else. It just isn’t as easy as that once it has been prescribed in the system. For reference, see the nurse and the Onc’s office that tried to say he was getting multiple prescriptions from multiple doctors and faced the wrath of my blistering keyboard strokes for daring to accuse him of such. A story for another day. There is no fury like the fury of a woman who’s husband is in pain and rationing pain medication to get to his next prescription and is suffering the effects of advanced metastatic colorectal cancer, but I digress. I sat in a parking lot and called our insurance pharmacy provider. I got a very nice and helpful lady at CVS Caremark and she said they just needed a prior authorization (PA), and once approved, we would be able to get the brand covered. She sent it to Dr. B’s office while we were on the phone and she told me to call them and give them a number to send it back to right away. She said to tell them to mark it Urgent PA and she said that would reduce the consideration time from 3-5 days down to 24 hours. I then called Dr. B’s office and explained. We went home to wait. David climbed on the couch and was asleep before he touched the cushions. Around 3:00, I got an email notification saying the PA was approved, so I took off to the pharmacy that had the brand name prescription. Not our usual beloved pharmacy where we drive up and they know us by name like Norm on Cheers, but THAT pharmacy where they work the pharmacists and staff seemingly like Hebrew slaves. There is never enough help and the people behind the counter seem to try their best, but this particular corporate pharmacy just does not seem to ever provide the proper staffing for the people that stand or sit in the incredibly long lines at that store.  After explaining the situation to the tech and then being told by the pharmacist that we had already been there earlier and was told it could not be filled, I finally made them understand that we now had the insurance gods’ approval to take some of their Fort Knox fortified drugs off of their hands. So, set the timer on that drug vault you say it is in and let’s get moving, Sir. After an hour and a half of standing around, sitting in the car, and then sitting in the drive thru line because I could not muster the intestinal fortitude to go inside again, I texted David that I was heading back home and had indeed scored the Precious.

August 13, 2024

We left a message on Monday with Dr. J’s office as he asked reminding him to call Dr. B about the pain medication change and did not receive a call back.  I called Dr. B’s office on Tuesday afternoon to see if the two doctors had spoken. The nurse was unaware of a conversation but once she spoke with Dr. B, he told her is was aware and they got the prescription ready for pick up. Because it was already 4:00, we planned to drive over the Fayetteville on Wednesday and pick it up. By now, David has one day left of his meds.

My car has been at the repair shop for three weeks after that lady hit us on 6/20. It has taken this long for her insurance to work out the damage and initial estimates and for the shop to be able to take my car then present additional estimates for the actual work that needed to be done in order to put my car back the way it was. While funny enough, I have seen the person tooling around town in her car a few times. The body shop called to say it was ready for pickup. We excitedly went to get it and drop off the rental car but found that the exterior door code thingy was not working, so I had to leave it to get that checked out. We noticed SL’s wipers needed to be replaces so we stopped at the auto parts store and picked up new ones. When we got home, David showed me for the 72nd time how to change them. Meanwhile, I was enamored with the face on the wiper arm. This lobster of mine is akin to Job.

August 12, 2024

We were at Piedmont Fayette this morning for the y90 mapping procedure.  We had planned to have some ablation but Dr. B wanted to wait before having another procedure until the PET scan on Friday. We got to the hospital at 6:30 and they got David all settled into the interventional radiology suite, slapped the party hat on him and started the IV. Then we just waited. Much about having cancer is waiting. One of the NPs from Dr. K’s office came by to talk about the mapping process and explain they would access the artery in his left wrist and then have a Sunday drive through the scenic cardiac countryside in route to his liver. At least that would be how I would describe it to patients on my first and last day as an IR NP. The preparatory angiogram is performed to map out the veins and arteries of the liver and block those that leave the liver and go to other organs. This is done to prevent radioactive resin from traveling to other organs when the treatment dose is given at the actual treatment visit. He explained that Dr. K would administer a “fake dose of medicine” (Tc-MAA) during the procedure that would simulate how the real medicine would react. If the medicine stayed inside the targeted area, that was good. If the medicine traveled outside of that area into other parts of the body or other factors they may encounter, it may cause him to not be a candidate for the y90 procedure. We were not previously aware of that part and didn’t know there may be an option for NOT being a candidate. This caused us both a little additional anxiety, but we decided it will be what it will be. They took him for the mapping procedure around 8:22 and he was back at 9:20. He was given a light local anesthesia, so he was awake during the procedure and alert when he returned. He was sporting a trans radial band covering a bandage that was put under pressure to stop any possible arterial bleeding. At certain intervals, one of the nurses released air from the band to gradually decrease pressure and check for bleeding. That is what I taught us while we were waiting, and I was doing my daily medical research. I took some pictures of the band because he thought it was cool and after that he took pictures because he didn’t like the way I framed it in the shot. After about an hour and a half, Nuclear Medicine came to take him for scans. Images are taken of the liver and of the lungs and the Interventional Radiology Team will perform an analysis of the images. Ideally, the radiologist wants to ensure that 80% or more of the Tc-MAA is localized within the liver and does not shunt to the lungs. Pulmonary shunting can cause radiation pneumonitis   My unsolicited but continued investigations into this procedure taught me that if more than 20% of the administered mapping dose goes to the lungs, patients may be required to undergo further embolization to ensure that the Y90 will be directed to the intended location within the tumor. The type of camera used is important. An issue with traditional gamma cameras is that data may be missed on the images. A camera such as the Ergo with its digital technology captures all data without any holes and provides a more accurate picture. (No idea what camera was used and the report didn’t specify exactly) After he came back from Nuclear Imaging, the radial band was removed and a new gauze bandage was wrapped around his wrist tightly in plastic. We were instructed to leave this on for 24 hours and if there were any signs of blood, to go immediately to the hospital because once arterial bleeding starts it doesn’t tend to stop on its own. I was dismissed by the nurse around 12:30 and ordered to go and get the vehicle. Too bad if David needed help dressing himself. I met him at the curb in his required wheeled chariot, and we headed to get breakfast at IHOP. He said he had been dreaming of pancakes and he had not eaten since the evening before. Then he produced the plastic radial band they had removed from his wrist and tossed in the trash. Oh right. Have I not mentioned he likes to keep the “supplies” that are used on him that he finds interesting? He has a collection of all sorts of caps and all of the hospital wrist bands and a few port lines, some kind of string, a beard cover, and now a radial band. After his huge brunch, he slept the entire way home, got comfy on the couch and sleep the rest of the evening. He said it was a good sleep, and we were definitely exhausted.

We received the reports from the procedure and scans later in the evening but they were a little too technical for our understanding. We will wait to hear from Dr. K or read further reports as they are available, and I will continue to apply my research skills to figure out what in the Sam Hill they are talking about.

Fun Fact: Who is Sam Hill exactly and why is his name invoked in such a fashion? (invoked or evoked? Had to look that up too) https://en.wikipedia.org/wiki/Sam_Hill_(euphemism). Well…that was interesting.

Additional Fun Fact: David’s shirt today says

Dad, what are clouds made of?

Linux Servers mostly.

August 9, 2024

David had a video visit with Dr. J, Palliative Care (Supportive Medicine) physician this afternoon. Dr. B referred us to him after we asked if such a visit would be beneficial. Dr. J is based in Atlanta and is open to video visits as often as possible. He was already familiar with David’s history, so he jumped right in with questions about his pain. Where it seemed to originate, where he felt it, how it felt, how often he felt it, how often he needed to take pain medication. He determined from speaking with David that he possibly has two sites of pain. One type in the abdomen that could be coming from the peritoneum involvement with the bladder and the other in his rectum which is the site of the mothership tumor. He explained some of the pain he was experiencing is indicative of referred pain and could be attributed to the bladder issues. He said with any pain medication, the goal is to reduce the pain by 50%. Damn. And here we were thinking 125% reduction was our objective. He wanted to try an extended release of the same type he has been taking in hopes of giving him more relief. He also discussed a couple of options for a nerve block that could reduce the pain he was feeling and thereby reduce the reliance on the opioids.  He is still on a low dose but not having to increase before it is absolutely necessary is our goal. Dealing with opioid prescriptions for chronic pain is not an easy task. You usually can’t get them until you are out and then sometimes pharmacies are in short supply due to the overuse and also increased need. Dr. B’s office prefers you pick up the prescription in person and that means a two-hour drive just to get the piece of paper. We have managed to get them to call it in once before but, going through the three lines of defense before you can get to the doctor is exhausting. I did ask about this in an earlier visit, and he told me to just let them know a few days before it is needed because it is difficult for them to just stop him during clinicals to key it into the system electronically. He said he doesn’t mind doing it if we give him a few days. With this new prescription, Dr. J explained he would not be able to prescribe it until he sees David in person, but he would reach out to Dr. B and ask him to prescribe it until we can see Dr. J in the office. Because it was already after 5 on Friday, he would need to make contact on Monday. David made an appointment with Dr. J on 8/26. He said that would give David two weeks to see how the ER formula was working for him. David wanted to think about the nerve block and has some questions and apprehension about it. The block could work anywhere to 1 week to 3 years and that is a pretty big range where it could work or not work. His main concern is what if he NEEDS to feel some pain to know something is wrong and then doesn’t.

July 26, 2024

We saw Dr. B today. David is up 7 pounds from the last visit and we joked that he could stop eating for two now with surgery off the table. He always wants to be at fighting weight if surgery is a possibility. His appetite has been pretty good of late. He is drinking a good bit of natural fruit juices and gatorade along with his water. We know that isn’t the best and it adds up calorie wise, but it keeps him hydrated and relatively content having more than just water. The nurse accessed David’s port and it flushed without too much drama. He got the usual lab work-up and we jumped right in with the appointment. Dr. B was not surprised by the TB recommendation against surgery and basically said they agreed with his opinion. He had already spoken with Dr. K and advised we should proceed with further ablation and Y90.  He wanted to be sure the PET scan was scheduled before any other interventional procedures. He said it was ok to proceed with mapping for the y90 but he did not want any ablation done before the PET in order to get the best scan. He said following the next procedure(s) he is anticipating starting David on Lonsurf as the next line of systematic therapy for mCRC in an attempt to manage the disease and increase survival time. He said he wanted to start a cycle of Lonsurf and then possibly during the second cycle, he may add Avastin which we spoke about in a prior visit. He explained the pill would be given in a 21-day cycle. He would take the medication on days 1-5 and then again on days 8-12. If added, the Avastin would be an IV chemo drug given three consecutive days every three weeks. The side effects are much less harsh with Lonsurf than with other chemo therapies with the most serious being a low white blood cell count. Dr. B explained that if his WBC is low, it would also indicate the drug was working. The Avastin, if added, cuts off the blood supply to the tumor and impairs healing, so any potential surgery would need to wait 6 weeks after finishing this drug. We didn’t discuss further surgery for the colon tumor at this time because the PET should tell us more about what we are dealing with. We always want to discuss surgery possibilities because David wants it out so very much. I asked Dr. B if there was a situation in which we would attempt the FULFIRINOX chemo again and he quickly said no. He said once it proves ineffective, you don’t go back to it. He said once the cells develop a tolerance to a chemo treatment, there is no reversing it. He wanted to go ahead and start the process to begin the Lonsurf even though we won’t be doing it right away. Just as with everything, it takes time to put things in motion and it would also have to come from a specialty pharmacy just like the oral chemo David took during radiation. He said of course this drug was more expensive as these things seem to go with the advanced disease and as you move into more clinical trial drugs. We will also need a patient education appointment to learn about the drug just as we had with the others. We discussed pain medication and side effects, and I asked Dr. B if David would benefit from a Palliative Care physician and he said we can always try and see. He said they had one that worked with their cancer group and within the Piedmont Healthcare System. He sent a referral, and we will see what comes of that. He said Dr. J was in an Atlanta office but did lots of telehealth visits, so he thought that would be a good option. I had already done some research, and this doctor popped up a few times and there seems to be good feedback on him. With that, we were done.

I always have other questions that I didn’t get to or just decided not to ask and sometimes leave a little aggravated. I felt this way this time but not because of anything specific. Dr. B always gives us his time without rushing us, but if you have ever been in a situation like this, there is never enough time… for anything. There is also never enough reassurance. As a matter of fact, there is hardly any in our case. It is tiresome for David, and we just want a break from bad news. Bad scans. Bad feelings. Dark clouds. We want him to live without this thing and its effects, if even for just a little while.  You really don’t know what you had until your health changes like this, and once it changes, you just can’t ever go back.

Fun Fact: I take copious notes at all of these appointments. In fact, I am usually writing way more than the medical assistant is transcribing. In the beginning, this made a nurse or three make some backhanded comment as if I were there to audit their work. Now, everyone is pretty much use to it when I pull out my journal. Sometimes I ask follow-up questions to clarify and sometimes I know I can jot things down and do the research later without wasting the doctor’s time. I look back at my notes and think that surely when future peoples unearth the extensive medical chronicles of oddly just this single patient, they will marvel at how, centuries before, colon cancer was treated by putting him on “lawn surf” drugs. And funny enough, if you Google lawn surf drug, it takes you to the correct site. Hopefully, in these years to come, cancer will have gone the way of small pox and the bubonic plague. Just too bad for this world (and for us) it can’t be now.

David’s shirt today: ABIDE. (From one of his favorite movies. At least a top fiver, The Big Lebowski)

July 25, 2024

I’ve started writing this entry at least a of couple times and started it in my head a lot more times than that. Over the last few months there has usually been a reason why I haven’t wanted to stop and go back over what’s happened.  In May, I wanted to just get away to the beach for a few days with DeeGee and not think about any of this and for the most part that worked. But afterwards, I found the next appointments just came that much quicker. On to more liver tumors and planning for ablation and then the ablation itself. After that, I found myself in a place, where, every day, I compared myself to where I was last year at the same time. Back then, feeling the worst I had felt and not knowing anything. Scattered memories of how I felt along the way and sometimes tied to pictures or events from that time. Then came the actual anniversaries of procedures and diagnoses of being anemic and learning about the cancer.  Each one didn’t just feel like it did at the time. It was that plus a solid year of treatment on top of it.  There have been some positive feelings about knowing what it is and that I didn’t let it just keep going.  Also on the positive side of things are all the people that have helped me since then.  If I’m honest though, it is difficult to wrap my mind around that the reason I have these things to be thankful for is because I have cancer. I’ve tried the best I can over the last few months. That’s for sure.  I did finally decide that I was willing and able enough to seek out some counseling services.  That’s been a long time coming because having done it in the past, I knew I wasn’t ready before now to actually participate fully in it.  Of course, it means being patient (ha! pun)  and waiting for appointments like anything else, but I did feel better even after one appointment.  I’m not looking forward to another ablation procedure or the Y90 stuff, but I am looking forward to being rid of a few more tumors and possibly stopping or shrinking others. I still have some pain on various days and have to manage that along with keeping an eye on how I’m feeling otherwise, too.  I’m still not great about getting ahead of the pain or staying ahead of it throughout the day along with forgetting things and having a hard time deciding on stuff occasionally. I am grateful that I’m still willing and able to have treatments and overall healthy enough by keeping weight on, etc.

On more positive notes, I’m still shocked at how much better plants do with fertilizer. We’ve had enough tomatoes to keep us in sandwiches, fried green tomatoes, and just plain cut up fresh tomatoes as a side dish for sure.  Even enough to share a few, too.  My peppers are putting off a little slower, but that’s expected and they’re still doing better than any time in the past.  I have even had the patience to let some of the jalapeños get giant sized as promised and even a couple of the Cajun Bells to pass from green to red. Those along with the hot banana peppers are nice for a kinda sweet heat.  I’m definitely thankful to be able to eat all that stuff again when I definitely could not last year. I’ve watched too many tv shows to remember but a lot of them have been funny and made me laugh which I really have needed.  We got a tall shelf and put it together for all my Lego stuff, hour glasses, and whatnot, so I can see those easier and pick what I want to watch while I’m writing things like this. I’ve also taken to going back to some of my circle-a-word (word search) books from last year (I date a page when I do it) and that really helps focus my mind elsewhere for a while. Caught up, finished and started some shows over the past couple of months: Suits, Resident Alien, East Bound and Down, Scooby Doo, Cobra Kai, You, Your Honor, Exploding Kittens, Hudsucker Proxy (which DeeGee swears we saw in the theater when it came out 30 years ago but I don’t remember it), Tacoma F.D.

All this to say that I’m hoping I can write a little more because it does make me feel better in the long run. Along with the fact that I’m really thankful that DeeGee is here to keep the other updates coming because I couldn’t get through this without her, and I definitely wouldn’t keep everybody updated like she does, obviously.

July 17, 2024

Dr. N called David today and explained that the tumor board did not recommend additional liver surgery. He said they looked at the scans and recommended going back to chemo and looking at clinical trials. We never expected surgery was an option until Dr. N wanted to present the case again, so we were disheartened over losing an option but not surprised. The board also recommned another PET scan. A regular one this time without the Dotatate radiotracer. The last regular PET David had was in September 2023. He had two PETs with Dotatate since then.

As we already know, the chemo protocol was not effective, and it appeared that David developed refractory disease during the last rounds. We were already told by Dr. B he had given him the strongest protocol he had. This really sucks because the systematic treatment is what David’s body needs to try and manage any microscopic disease that most likely is lurking. I called and left a message for Dr.K (Interventional Radiologist) to ask about proceeding with more ablation and/or Y90.

July 18, 2024

Dr. K called David this morning and said he was ready to move forward with his initial plan following the scans. He explained that tumor boards are made up of doctors from all sorts of backgrounds and having that input can be helpful, but many times, the treating physicians aren’t on the call and so cannot weigh in on the current and past treatment plans. He said he had intended to join the call this past Friday but he had a procedure run long. The board explanation made a lot of sense with the recommendation for more chemo and clinical trials. He said he read the notes from the discussion, and he felt based on David’s current health, tolerance and young age, he thinks he can continue with the plan for Y90 mapping and ablation. A scheduler called later this afternoon and the Y90 mapping will be on August 12. Dr. K had told David he would be prepared to ablate a few other spots at the same time if possible. These would be cryoablations using extreme cold instead of heat.

David and I both felt a bit better knowing we could still proceed with a treatment option. We plan to discuss clinical trial options with Dr. B at the visit on July 26.

We were also able to schedule a PET scan for August 16.

July 10, 2024

We went to sleep last night with extreme scanxiety and woke up with the same. So much so, I asked for thoughts and prayers for David on FB this morning of all things. I NEVER do things like that but woke up with it on my heart. Literally, the first thought I had. I didn’t over think it and just asked. The anxiety of the scans was something we couldn’t shake no matter how we tried to makes jokes, cry it out, or find positives. I guess I am feeling an increasing desperation over this situation.

We headed out for Newnan early this morning. We had to park a good distance away but the very nice parking lot golf cart guy offered to pick us up and carried us right to the front door. It was a sunny, breezy morning with low humidity which doesn’t last in July or in Georgia but it was nice for a bit. We were delighted to find out that they were going to do both scans at the same time. They called David back pretty quickly and he was back before I was able to get too deep into work emails. We left and the same golf cart guy picked us up and carried us back to our car. Like valet in reverse. We were scheduled to video chat with Dr. N at 11, so we didn’t have time to get all the way back home before the call. We opted to head over to Piedmont Fayette to pick up his prescription at the Cancer Institute and wait for the call. Before we made it out of Newnan we had the scan results. I was hesitant to read it but David was ready. So he read, and I drove. It was a short narrative that did not sound too bad. Basically, it said a few of the tumors in his liver have increased slightly in size but there was no indication of new involvement. The nodules in the lungs are very small and there was no indication of new involvement there either. We were a bit relieved since we had prepared ourselves for more bad news. Over in Fayetteville, we found a little table tucked out of the way in the cafe and set up the laptop to wait. Dr. N was late signing on, but we expected that since he was coming from surgery. When he appeared on the screen, he chatted a moment and then we got into it. He showed us the scans and pointed out the tumors he saw and the ones in the areas that were ablated a few weeks ago. He said he would like to present the scans and the case to the tumor conference this Friday in Atlanta and get recommendations from the group. He is in favor of more surgery and feels he can cut them out. The hope would be that they didn’t return because each surgery becomes more difficult. We discussed some other options and he said he would speak to us again after the conference met. He asked us to let his PA know what Dr. K thought after the call this afternoon. So we headed out to grab some lunch before the 1 pm call. We hurried through lunch to get back in the car and be ready for the call. It wasn’t a video chat, so we just needed the phone. Dr. K was also a bit late finishing up a procedure and his PA let us know he would be in touch shortly. We decided to go get ice cream while we waited. Who doesn’t love melty ice cream in the car when waiting on a call from your doctor about the cancer in your liver? The PA called us back to tell us that the scans looked good to them and the ablated tumors were gone with no appearance of residual disease where they were located. This was good news of course. He discussed the plan Dr. K had for moving forward, and we told him about our conversation with Dr. N. He said the two doctors would most likely want to talk before Friday and said we would wait and see what the tumor board recommends. He said having options is a good thing, and we agreed. David was starting to feel a bit rough, and we headed on home.

The CT scan Dr. K ordered for David’s liver was already scheduled and Dr. N’s office called and spoke to the Imaging department at the hospital to try to get a lung scan done at the same time. They said it would not be possible, so we have scans on back to back days.

July 10-CT Scan on Liver – Piedmont Newnan

July 11- CT Scan on Lungs – Piedmont Newnan

June 19, 2024

We rolled up to the stop light on the square in Zebulon heading to Piedmont Atlanta this morning. There were cars in front, behind and to the left of us. We were in the right lane and the light changed. Cars started to roll forward and the lady to the left of us decided to change lanes and crashed into the side of our car leaving damage down the driver’s side front and back door. We pulled into the parking lot at the corner and David called 911. We got out and waited for police. Zebulon PD arrived and took down some information while we waited for GSP. The lady was quite rude the entire time and even demanded that the officers hurry up because she had a doctor’s appointment. You can imagine how that went over with the troopers. She acted angry and tried to blame me saying I came out of nowhere. Long story short, she was deemed to be at-fault (without question) and the troopers explained how to obtain the crash reports and whatnot. Both GSP troopers and the Zebulon PD officer were very courteous. Shaken, we drove on to Atlanta. Thankfully, our car is driveable. It just looks like we tried our hand at a demolition derby. It happens so fast, and I only saw her a split second before she darted over and made contact. It makes me so sad to think about it because I take pride in my car and it didn’t have a scratch on it before this. In the end, it is just a car, and we weren’t hurt badly. Thankfully, we did not involve anyone else in the accident when she hit us. It always could be worse especially with David just having a liver procedure a few days prior. It is just another thing to have to deal with that we did not need. Why is life like this?

After the eventful morning, we made it to see our favorite liver surgeon, 30 minutes late. David had called after the accident to let them know we would be delayed. His office called a couple of weeks ago and said Dr. N wanted to see David in the office. We knew he was following his progress but wasn’t really sure why he wanted to talk to David since more surgery was not on the table now. Dr. N was not aware though that David had already had the ablation procedure and had wanted to discuss options going forward. He said since this was the case and because we have new lung involvement, he wanted to present David’s case to his tumor board once again. He wants to have a CT scan on David’s lungs at the same time they scan his liver to check the ablation results in July and then present the case the following Friday. He plans to video chat with David on July 10 following the scan and discuss the best options. We are extremely grateful Dr. N wants to help. We will take any counsel we can get.

June 14, 2024

David saw Dr. B today for blood work and discussion regarding the recent PET scan results. They flushed his port while we were there also. The longer the port goes without use, the harder it seems to get a blood return. It took a little bit but the nurse got it going. Ports move around so it is not uncommon to have issues like this. Just more of an inconvenience. Dr. B said he wouldn’t say we would not ever do the colon cancer chemo again but since it was not as effective as we wanted, he was hesitant to go that route again. He mentioned the possibility of trying a different chemo protocol that is used for neuroendocrine cancers instead of the regimen used for colorectal cancers. He explained there were two types of chemo combinations that could be used. One would be if the cancer in David’s liver had neuroendocrine receptors which his does not. The other could be attempted for the cancer in David’s liver that Dr. B still believes to be the same adenocarcinoma that is in his colon but with neuroendocrine features. He said this protocol (Carboplatin & Etoposide) was used for high grade and single cell cancers. He said it was given for three consecutive days every three weeks. Dr. B wants to allow Dr. K time to treat David’s liver following the ablation but wanted to mention this as a possibility. He said we would continue to watch the new lung nodule and he noted it was small. We have a follow-up in six weeks.

David’s shirt today: Avoid negativity.

(Ask David, he can explain it to you)

June 12, 2024

We had to be at Piedmont Newnan this morning at 6:30 am for David’s Liver Ablation procedure at 8 am. They let me wait with him in pre-op until they came to take him at 8:30. We were both a little nervous but not as much as we were for the liver resection surgery in February. He had to change into a luxurious hospital johnny but he was allowed to keep his pants on so he was glad for that.  Once they came to get his IV started, I went to the waiting room and waited. And waited and waited. Dr. K’s nurse practitioner told me that it may take longer than an hour depending on how many tumors Dr. K was going to target. She told me not to worry if it seemed to be taking a while. This procedure is a CT guided procedure so David would be in a CT type machine during the process. He was given general anesthesia and intubated.  David isn’t too keen on the tube, but they told us it was left to the anesthesiologist and sometimes they used oxygen but often times they used intubation. Waiting at the hospital is torture for me. I read, do puzzles, scroll on my phone, take stock of everyone in the waiting area, eat a snack, and after that ten minutes has passed, I am fidgety and bored. I always wait too long to get up to go use the restroom and then I am afraid they will call me while I am gone, so I end up not going and they don’t call. Always my luck. Around 11:30, they called for me to come back to the area where we started out this morning. His nurse said he had gone up to the PACU following the procedure due to the intubation and had done well up there. She said his pain level was a 4. When I saw him, he was awake and a little grumpy as he usually is when in recovery. He was watching Bluey (he loves that cartoon. It makes him happy) on one of those neat little screens with the monitor arm thing that telescopes over the bed.. All rooms should have those. In fact, I would love one of those at home. He said he felt ok but felt really sore. He said his shoulder was hurting pretty good and the nurse explained there can be referred pain in the shoulder after this procedure. David said they also had told him in the PACU, that because they had to manipulate his arm over his head during the procedure, it would most likely be sore. They told him sometimes they pull tendons and muscles by moving arms back and forth because people are knocked out and cannot tell them it hurts. I guess checking range of motion beforehand isn’t a thing you do.  Anywho, I asked if he could have ice or water and his nurse said she could give him a little ice but he had to wait about an hour for liquid. The ice was nice for his scratchy throat and later she brought him a ginger ale. Dr. K stopped by and said he was able to target three of the largest tumors on the right side of David’s liver. He said he could see them clearly. He said he would order a scan in a few weeks to check progress and determine when to do the one on the left side of the liver. He said the one under his heart is harder for him to see and he mentioned possibly doing Y90 on just that one in order to save damage to the rest of the liver. He said he didn’t see any new spots and we had “plenty of tools left in the toolbox in order to manage the disease”. David and I both were relieved to hear that even if it is just the situation in this moment today. David slept a little off and on and we had to hang around until around 2:30 when they let us go. I went for the car and David took the mandatory wheelchair Uber to the front to wait for me. His nurse gave us a prescription for an antibiotic that Dr. K wrote and said he should not lift anything heavier than a milk jug for about a week. So, it is me and big gurl Gracie the Emotional Support Blanket riding piggyback again. He said he was feeling hungry and there was a God’s Chicken place across the street so we curbsided it and he ate a grilled sandwich on the way home. He was all zzzzzzz before he took his last bite and slept the whole way home. I rattled off a gratitude list to myself and just drove home on auto pilot feeling pretty tired too. I deposited him and big Gracie on the couch and went to the pharmacy for the script. SL picked him up some mashed potatoes from KFC which is his after-surgery-feel-bad-go-to food. He doesn’t eat them any other time. He sampled them and then crashed on the couch where he is still snoozing. I asked if he wanted to go to bed and he said no he was too comfortable. I went out and watered the flowers and his tomatoes and peppers. I am running on empty, and boy is it hot. I think I am done for the day too.

David’s shirt today: There is no cloud. It’s just someone else’s computer.

May 31, 2024

David had a PET scan today at Piedmont Imaging in Atlanta. He was called back and given the Dotatate tracer just as he was for the PET in February.  He went into the little room to wait an hour before the scan. I waited in the little area outside of the door in the same chair where I have waited twice before. I tried to read but mostly looked out the window at the traffic. People coming and going and the construction across the highway that was just starting when we were there in September looked almost complete.  A sort of frail older lady was waiting a few chairs down for someone who I presumed to be her significant other.  When he came out, he told her he was “quite ready to go”. They both were elderly and seemed to have trouble walking. I watched them walk arm and arm down the hall and out of the nuclear medicine suite. Watching them hold on to each other so tenderly while shuffling along while he told her about his experience was very sweet. It was also sad. I often have the thought while waiting in these areas that absolutely no one comes into these places for anything good. The reason you are there is not good, and often times, the results are not good. At least that has been our experience through all of this. I catch myself wondering if David and I will make it too shuffle around in our old age. I then have to immediately shift my thoughts to other things or risk succumbing to thoughts that doesn’t do anyone any good. Another lady came through the doors escorted by one of the techs. She was telling the tech how frightened she was of the scan and of being in the machine. She explained a bad experience with an MRI. The tech told her she would gladly let her see the machine and show her how it worked to ease her mind as soon as the current scan was complete. She patiently reassured her it would not be the same experience. The rooms have windows and there is a good bit of sunlight in the area including the hallway where I always wait. From what David has described about various other scan locations, this is one of the nicer ones. There aren’t a ton of places in Georgia that offer PET scans. After the hour wait, David was in the machine about 45 minutes and then he was done and also “quite ready to go”. He wasn’t feeling well and he didn’t want to stop for lunch, so we headed back south.  I always pack a protein snack bag so he was content with that today. We usually look forward to eating someplace, so I knew he really didn’t feel well to opt out of that. We stopped off to walk a dog on the way home and David got a notification that the results were ready.  We decided to wait until we got home to read it. We grabbed take out, and I know I drove slower than usual just because I didn’t want to read it. I had a bad feeling about this scan despite offering prayers, begging, pleading, bargaining and trying to manifest it to be a positive outcome this time. Once home, we opened the report.

1. No definite dotatate PET/CT evidence of somatostatin receptor positive metastatic disease. Meaning no neuroendocrine or other somatostatin types of tumors showed up which is good.

2. Hypodense liver lesions appear to be new or increased in size from dotatate PET/CT of 2/29/2024 without radiotracer activity on the current study however suggest progression of adenocarcinoma versus poorly-differentiated neuroendocrine tumor metastatic disease. This confirmed what we knew from the MRI in May and why we have an ablation procedure scheduled. Radiotracer uptake would have shown if the tumors were more neuroendocrine so this indicates it is the same cancer as the colon tumor which is addenocarcinoma. The liver tumor biopsy in February showed they had neuroendricne features. Basically, it would mean there were two cancer types if these had lit up on the scan using the Dotatate.

3. New 6 mm left upper lobe pulmonary nodule compared with 1/27/2024 concerning for metastatic disease. Additional small 5 mm right lung pulmonary nodule is unchanged since 9/22/2023. This is new and it is this month’s devasting news.  It appears to have spread to his left lung. The right lung nodule appears to be unchanged and has been there since initial diagnosis. Oncologist has continued to believes the initial one to be benign and unrelated since cancer changes rapidly in the lungs.

4. Stable appearance of the rectal tumor. This is good and confirmed the MRI in May.

So, once again…bad news.

How do radiologists read these things all day? I know they don’t know the person. It isn’t personal. They don’t have a connection. But they have to know this person is someone’s person. Someone’s life. Someone’s reason for getting out of bed and putting one foot in front of the other every single day when it seems too hard to face the reality of this terrible and unfair situation. It cannot be easy to see these scans day after day knowing you have to write a report that will change someone’s life. I would think you would have to hold tight to the knowledge that, without this, effective treatments would be nearly impossible.

June 3, 2024

As of this evening (Monday), we have not spoken to the oncologist, but he is aware the scan results are available. We did hear from Dr. N the liver surgeon this morning and he wants to see David in the office. We aren’t sure what the purpose of this visit will be and will just wait to see instead of making assumptions about what it means. The liver ablation procedure is still a go for 6/12 as far as we know right now.

May 16, 2024

We met Dr. K and his PA today. Both were very likeable. Dr. K explained two options to attempt to manage the disease in David’s liver. Like we read previously, one option is a guided ablation and the other is Y-90 radioembolization. He explained that the ablation would involve deep sedation and the use of guided needles that would be guided into his liver to the tumors that could be seen. The needles would be heated and would bust up the tumor. This would not cause any damage to the background liver. He said he could do up to 5 at a time and only one side at a time. He said he counted 7 that he could see  on the scan. He noted one tumor was resting in the liver under David’s heart and this one would be difficult to ablate due to the location. He explained y-90 was done by a catheter that would be inserted into David’s arm under a lesser anesthesia and guided to the liver in order to release radioactive beads that would ideally seek and destroy any cancer in the liver seen or unseen. This procedure causes damage to the background liver and will cause the liver to look cirrhotic and can affect function. He said the choice was David’s and suggested if it were him, he would go with ablation first and then have a scan about a month later to see what shows. Y-90 could be saved until we see if further involvement appears. He said David’s liver looked to be in good shape even after the chemo (chemo damages the liver among other things). The scheduler is to reach out to us to schedule the procedure. After leaving, David said he felt better about the information but was anxious about another procedure. I assured him anyone would be. David is not fearless. Who really is?  What he is though is brave and willing to do what it takes to live. I am frightened of all of these things. I am terrified of the reality of all of this. He manages to keep us both stable enough for us to take one step at a time and then move forward with all the hope two people could possibly have in this situation. We are grateful to have options and each other.

After the appointment, we did not quite recreate the good day out we had last week but we stopped at Lowes for a new tub water spout and also bought a big potted lantana for the back patio so we could look out and see something blooming and possibly attract some butterflies. We had lunch and came home to unpack from the trip.

May 9, 2024

So David and I took off on our PCB road trip today and didn’t look back…well I did when I backed up. SL had finals and wasn’t really feeling like making the trip with the dorky parents this time, so David and I decided to leave earlier than we planned. Thanks to our wonderful friend and condo owner who was so gracious by being flexible with our travel dates and other things. We have rented from her for years and it is always like going to a second home. We appreciate everything she made possible for us this year. Thank you JT.

We got a later start heading out than we wanted but that is par for us. We enjoyed the trip… talking and listening to podcasts and stopping the podcasts to talk about the podcasts. We had zero plans to do anything this time except just go and try to forget things for a while. We have been looking forward to just having no plans and no place to be. We stopped a few times on this trip to let David move around and this seemed to help his ADD and mood. It helped me too since apparently, I do not have the stretchy, durable bladder I had back when we could make the PCB run in about 4 hours flat without stopping. I am forever having to find a decent restroom to pee before, during, and after travel. As a kid, I hated this about going anywhere with adults. Always having to find a restroom before any fun could commence. Now I somehow find myself wearing the same wrinkling suit of age as those individuals from back thence. Fun Fact: Did you know that the snack machines at the Alabama Welcome Center sell anklets? Neither did we. And why are welcome centers so creepily creepy? Maybe because I remember stories of murder or kidnapping or unpleasant things like that from the 80s and 90s. There are always some odd ducks at welcome centers.

May 10, 2024

I had scheduled a grocery pick up from Walmart for last night but missed it because they stopped bringing out groceries at 8. It seems like things close earlier at the beach than I think they should. Like, I am on vacation, so I guess in my mind, everything should be open all of the time. So, we got up this morning and rode a couple miles down Front Beach to get the required vacation snacks. I am not a Walmart fan but coming from a small town, it is pretty much all we have outside of the local grocery store. Fun Fact: The very day we got grocery pickup service in little ‘ol Thomaston, GA, I had David there for a pickup, and I have not bought a cart full of groceries inside since.  Incidentally, when I scheduled the grocery pickup that day, I had no clue it was the first day. It was during Covid and David was met at the car with balloons, goody bags and a camera recording his pickup. Turns out, he was the very first pickup customer for Thomaston and that was his 15 mins of celebrity fame. Anyway, we got back to the condo just in time to settle in for a day of rainy, stormy weather. The saying is true though. A rainy day at the beach is still a day at the beach. It beats any day in the regular drudgery of life. A friend said the other day that rainy beach weather gives her an excuse to lounge around. I agree. You don’t feel the guilt of needing to be out doing things to prove you did something worthwhile on vacation. David and I had been warned about the Gulf Coast Iron Man competition the next day. It started, transitioned, and ended at the condo and much of the parking was commandeered for the events so we didn’t want to risk the sweet parking spot we lucked up and got at the front of the tower entrance just to go sloshing around at the beach shops. The beach view was perfect. We ordered in this evening and have been watching our tasty Five Guys burgers and fries ride around in some GrubHub person’s car. “Natalie” picked it up and then proceeded to drive in the opposite direction picking up and delivering to everyone else on the beach until she reached the hungriest people on the planet where she tossed our luke warm soggy burgers on the doorstep. This irritated me to no end. The order was marked late at the 1.5 hour mark and there isn’t any recourse for this kind of service really. They give you $5 off your next GrubHub purchase that has to be used within 30 days. So what’s the point? We had tipped well too so it just feels like a personal letdown.

May 11, 2024

I woke up early and peeked out between the curtains all squinty like you do because the bedroom is so dark and the outside beach world is so bright even at ungodly hours of the morning. I never run to the window at home first thing when my feet hit the floor to throw open non existent heavy light blocking drapes but we do it at the beach every day as if checking to see if it is still there or if we were swallowed up by the sea overnight. The 1,800 iron men (and women) 70.3 participants were lined up on the beach ready to start the swim portion of the competition. The start time was 5:40 am. David woke up soon after and we got set up to watch them all pile into the ocean and swim the 1.2 miles out and then to the shore. And let’s just be honest, I will admit we were watching for shark attacks. We are not people who prefer the company of large, medium, or small crowds of other humans, so we spent the rest of the day 11 floors up going from beach view to street view watching them transition from the swim to the 56 mile bike ride then back again to run 13.1 miles and back to finish at the front of our building. These triathletes are amazing. David said we watched so much Iron Man today that he felt he had to drink Gatorade this afternoon. The awards ceremony was at 3 by the pool so we sat on the balcony and watched. The fastest time was by a male and a female ages 18 & 19. I think they did it in around 4 hours. There was like a total of 8 hours to complete the competition. The oldest participant was a guy that was 82 I think. Once they cleared out, we took our chairs and went to sit on the beach. I struggle with my backpack beach chair and sand much less all that iron manning exercise that went on today.

May 12-15

We spent some time on the beach and more time inside watching it rain looking for the rip currents in the ocean from the balcony, and watching the last season of Curb Your Enthusiasm. I am a big Seinfeld fan, and as much, a Larry David fan. We also spent time trying to catch up on Wordle. We found Wordle blanks our minds and when thinking about words and letters we don’t have room to think about things like cancer and livers and colons and rectums (Oh, my!) Like everything else we do, we play as a team because I need his brain and patience and reasoning and he needs my ability to spell. We went out to dinner for Mother’s Day and a few other evenings with the early bird crowd. Each evening, after the rain, we were able to take the chairs and sit on the beach. There is no better time at the beach than in the evening and early morning. We like to search for treasures and shells and we stopped and bought a metal sand scoop and had the best time fishing things out of the water. We found so many shells and several pieces of sea glass (green, blue and brown) which I covet like Gollum’s Precious. I love, love, love finding sea glass and really any unusual thing-a-ma-jig that washes up. We came across a piece of brick in the water this time with edges that had been washed smooth like a pebble.  I love the tiny intact shells and put them in little glass bottles. We always bring home shells even though we have enough to stock a small beach or pave a seafood restaurant parking lot. We always check to be sure they are vacant because I do not remove shells that have tenants or any living thing like a gray sand dollar. David enjoys beach combing too, but I know he tolerates the fact I could do it for hours every day. He is like that with everything. He is my go-alonger. Up for anything. Supporting anything. Making things happen I don’t know how to do. He never complains and when I ask “are you ready to go”, he says “whenever you are”. He is my heart. I love sitting with him on the beach when it is just dark enough to see outlines of things and the orange lights on the hotels and condos come on for the evening. David makes me laugh always and there is interesting people watching to be done on the beach at night as well as during the day. With the rain and storms most days and purple and double red flags for a few days, we didn’t get to go in the water but once. David was more disappointed by that. He likes to remind me that he has no interest in getting eaten by sharks or having a 100 foot Man o’ War tentacle wrapped around his torso all the while he is wading right on out there to swim around like bait for said creatures. For years, he has always spent hours making these incredible sand sculptures. He made lots of mermaid tails over the years that allowed people to step down behind it in the sand and pose for pictures as if they had a mermaid tail. He loved to make them and go back to the room and watch from the balcony all evening as people would stop and point and hop down into the dugout to pose. Over the years, there have been suns, and starfish and hearts and anything SL would request. As usual anything he attempted was perfect.  For the past couple of years, he has not felt like bringing along all of the sand stuff, so we didn’t bring anything this time to play. I attempted to make a snowman with some tools I got him a while ago that makes sand spheres, but the thought was abandoned after my 49 year old back suggested I should really just accept my age and get off the ground. For a few days, we watched a large fever of rays swim and chase the small fish and things in the waves. David saw some jump out of the waves a few times. They are fun to watch. The ocean was angry for a few days, and we saw people that could not resist getting in despite beach enforcement and the sign trailing behind the overhead plane telling people to stay out of the water. As soon as the patrol would move down the beach, the people would head back to the water. The day we left, the ocean was loud and white caps were way further out than you usually see them. I just know we left all kinds of treasure on the beach. Probably tons of sea glass in all sorts of magical colors. It is always good hunting after the water has been rough.  We both get sad when it is time to go no matter how long or where we stay. This year was no different and maybe a little worse. Vacation is a time to forget worries and bills, and health concerns and life stuff. I could live a good life just having two questions for the day: What time are we headed down to the beach and what are we eating for dinner? We are not looking forward to the upcoming doctor appointments and whatever treatment is in store for him now.  We took that for granted for many years. Coming home was just coming home from a nice vacation and getting back into the swing of work, school, etc. This time, coming home is back to the struggle of trying to survive.

May 8, 2024

We had planned to make our annual beach visit in the next two weeks but after seeing Dr. B on Monday, we decided to move up the trip while we were waiting on an appointment. We always look forward to visiting the beach. We have always had to work in our away time between busy pet sitting times, but we don’t really have the luxury of making long term plans anymore and are learning just to take the time for us when we can. Unfortunately, this means the business is suffering a bit, but I don’t know how to make commitments to people weeks in advance when I have no idea what we will be dealing with and when. It has added another layer of stress because I don’t want to disappoint people and we love all of our pet clients. Anytime someone must find an alternative for service, it makes it easier for them to go elsewhere next time. I understand that of course. It is just another example of every aspect of our life being affected by cancer.

David got a call today from Piedmont scheduling to make an appointment with the radiologist that Dr. B mentioned. We have a consultation appointment on Thursday, May 16.

May 6, 2024

David and I have had a weekend of sadness. We tried to stay busy with things around the house but the reality of the scan last week is hard to cope with. It is forefront in everything. I decided to take the whole day off not knowing what information we may receive today. We had an early appointment with Dr. B this morning. As expected, he is concerned about the new liver involvement and does not recommend surgery for the rectal tumor. The liver must take priority once again. He is referring us to an interventional radiologist that specializes in primary and secondary liver treatment using Y-90 radioembolization and/or ablation. Dr. B spoke about chemotherapy again but explained David already had the strongest treatment available and Dr. B was not confident of that again since David did not have a good response to it the first time. He also spoke about the possibility of using another drug for the rectal tumor called Avastin (bevacizumab) that can be used to treat metastatic colorectal cancer along with fluorouracil (5FU) chemotherapy which was a part of what he received previously. I have since read a good bit about this drug and it has pros and cons and many serious potential side effects. The medicine works by starving the tumor and preventing the growth of blood vessels. It prevents wound healing so it cannot be used with surgery. Dr. B said it could be 2-3 weeks before we could see the new doctor (Dr. K) and we would first have a consult followed by an appointment for the treatment plan before the treatment. Depending on the plan, he said treatment is usually done within a day but lesions on either side of the liver would need to be done separately. While not an ideal situation, we are grateful to have options right now and are anxious to meet with this doctor. David’s blood work shows nothing of concern. His last CEA was elevated which is to be expected now that we know about his liver.

Our 18 year old microwave up and retired from faithful service yesterday, so David and I went on to Newnan after the appointment to shop for a new one, run some errands and have lunch someplace we haven’t tried before. Despite the now heavier and darker cloud hanging over us, we ended up having the best day we have had in a long time just messing around. We found a microwave and were able to use some gift cards we had saved to pay for it, so it was like getting one for free. We dropped off some clothes from our recent closet clean-out for donation, did a little shopping, and had a tasty lunch downtown. We laughed a lot and just enjoyed the ordinary day together so much.  

May 2, 2024

We got up and felt like we were just moving through Jello to head over for the appointment with Dr. C to discuss the surgery we have wanted for so long and now expected to be off the table. We enjoy seeing Dr. C. He is very patient and kind and has a wonderfully familiar manner. He just feels like a friend. He said looking at the rectal scan he was ready to proceed with surgery but for the new liver involvement he would wait to see what Dr. B suggested during our visit on Monday. It was what we expected. He said for us to ask Dr. B to call him while we were there on Monday. We feel Dr. B will not recommend surgery now, so we are now hoping there will at least be options for liver treatment. David commented that he always feels better after talking to Dr. C and for that I will always be grateful.

Maybe I already mentioned that we leave these little frogs where ever we go if we can find a spot. We started doing this sometime last year after David’s diagnosis. We hope they make people smile. We like to find these little unexpected things too. It also gives us a chuckle when we sometimes see them in the same spots when we return. Did someone see them and leave them there or have they gone undetected? I guess it is our attempt a leave a little “sunshine”.

May 1, 2024

We went over to Piedmont Fayette today for a rectal and abdominal (liver) MRI. The imaging office called this morning to say they would need to combine the two separate appointments into one scan because he would not be able to receive the contrast twice. David and I have both tried to be positive about this scan and our greatest hope was that everything would work out to proceed with surgery soon. Once we arrived, they called David back quickly. There were not many people waiting, so I was able to choose a seat over in a corner, away from anyone, to do some work while I waited. It wasn’t long before someone came and sat down two chairs away from me. This was a bit irritating since there was actually only one other person in the waiting room and empty seats all over the place. I never understand why people choose to sit so closely to someone else when they don’t have to. I was already anxious, and this dude made it worse with his constant fidgeting and sighing and then his stretching out in the chair with his feet on the column wall in front of him. Who does that? I couldn’t really see through my agitation at the time, but thinking on it since, maybe this person was nervous about a scan too and just wanted to sit near someone. Or maybe he was just oblivious and wanted to rest his feet on the wall. Or maybe it was to distract me from my own disquiet. Weird how people are put in our path and sometimes we never know why. Anyway, the MRI took around and hour and a half and then David and I were on our way again. We decided to stop and grab some dinner before heading back home.  Just as our food came to the table, David got a notification that the radiologist’s reports from the scans were ready. We were both anxious and said we would eat first and then read them when we got in the car. After we both sort of just sat there playing with our food, I asked him if he wanted to go ahead and read the reports. He said no we would wait. Then he said well, I don’t know maybe and what did I want to do? So, I took out my phone and said let’s just do it because it was going to be ok. I really believed that. So, we decided to go ahead. We always read his scans together.

First the colorectal scan…

Findings suggest partial response to therapy. Decreased size and bulk of the high rectal tumor. Residual invasion of the peritoneal reflection. There is tethering of the posterior bladder wall without residual intervening fat plane. This may be treatment related. Early bladder wall invasion is difficult to entirely exclude. Improving perirectal lymphadenopathy

In short, the tumor shrunk as did the lymph nodes near the tumor which is good and what we wanted in order for surgery to be attainable. The attachment issue is still there but hard to determine the extent. We knew this based on the twisting pain David continues to feel where we believe the attachment to the peritoneum is.

Now the liver scan…

Worsening metastatic liver disease. There are multiple (approximately 10) suspicious liver lesions. Largest lesion is in the right liver measuring 2.1 x 1.7 cm. Additional lesion is noted in the right liver measuring 1.2 x 1.5 cm. There is a lesion in the left liver measuring 0.8 x 0.9 cm. SPLEEN: Unremarkable PANCREAS: Unremarkable ADRENAL GLANDS: Unremarkable KIDNEYS: No suspicious renal lesion VESSELS: Unremarkable ABDOMINAL NODES: Unremarkable PERITONEUM/MESENTERY/BOWEL: Unremarkable SOFT TISSUES: Postsurgical changes in the ventral abdomen BONES: No aggressive osseous lesion.

In short, it is a hard gut punch. AGAIN.

We sat at that table stunned. I was unable to stop the tears coming fast. I was unable to stop the horrible thoughts coming even faster. Across the table, David was stoic. The waitress came over to check on the food and we asked for boxes so we could just go. We went to the car and drove home clutching each other’s hands in relatively the same feeling of devastation we felt on July 18, 2023, when we first heard the word CANCER.

April 30, 2024

We saw Dr. Wa today for a 4 week follow up visit after radiation. Dr. Wa was very encouraging regarding the CT abdominal scan on April 2. He showed us a side-by-side comparison of the tumor and we could see the shrinkage cause by the radiation treatments. Dr. Wa suggested we proceed with discussing colorectal surgery with Dr. C sooner rather than later. He said he wanted to see David come through this. He asked us to come back and check in to keep him in the loop in about 4 months.

April 26, 2024

It sounds greedy and ungrateful, but a month hasn’t been enough time for me to clear my brain. Having no appointments has been nice, but I have had some on and off pain lately.  Mostly though, it’s just hard for me to put all this out of my head reliably. It’s the predicament that I’m in most often. I want to know more but then again, I don’t really want to know more. That makes no sense, but it is how I feel.  I want to get tests and find out where I am and what more needs to be done and other things, but then again there’s a part of me that doesn’t want to hear any more about it. Ever. My brain usually keeps me on what I feel like is the right track of keeping up with things, and when it doesn’t, usually something in my body will remind me that there’s still more work to do. So, I guess that’s good. With stuff like this, it’s hard to keep my brain from jumping from topic to topic whenever it sees fit. My sleep has been thrown off for a couple weeks now. That doesn’t help a lot either. At least, I am able to usually get some control over my brain and guide it to and from various topics, so I don’t spend too much time in places that aren’t useful. So many pretty days recently and I feel bad because sometimes the best I can do in a day is exist. It feels like I should be doing more even though I know these aren’t normal times. There is lots of stuff to do, but I’m usually lucky to get one thing or so done outside my regular routine. Cancer takes a lot from you and isn’t very good about giving any of it back without a fight. I’ve found it hard to put it out of my head when I get daily reminders that it’s still with me. Thankfully, the pain has been more occasional than regular. However, I have a constant numbness in the length of my toes and my fingertips possibility stemming from the chemo pills last month.
 
So, in an attempt to distract my brain, I’ve forced myself to open and turn the pages in a book that will challenge, if not overload said brain, where it’s less likely to remind me of the things I’ve mentioned above. It’s the first, Six Easy Pieces, of a set of books from Richard Feynman’s freshman intro physics courses in the 60’s. I assume there are six parts in it (haven’t counted) but so far, I wouldn’t say it’s easy in the least. Which is exactly what I need and why I’ve continued to force myself to pick it up when I don’t necessarily want to. There have been a few good well-constructed parts though. Like a couple parts about the size of atoms.
 
“…if an apple is magnified to the size of the earth, then the atoms in the apple are approximately the size of the original apple.” Six Easy Pieces p. 5
 
and
 
“If we had an atom and wished to see the nucleus, we would have to magnify it until the whole atom was the size of a large room, and then the nucleus would be a bare speck which you could barely make out with the eye, but very nearly all the weight of the atom is in that infinitesimal nucleus.” Six Easy Pieces p. 34
 
But I also have to admit there are parts that my brain has definitely skimmed over and not fully absorbed. Again, definitely good for me even in that way, because I would naturally want to force myself to look that stuff up and understand it better. I also know that would just lend itself to me not getting around to that and never picking the book up again.  Years ago, I read Surely You’re Joking, Mr. Feynman (Adventures of a Curious Character) and it originally piqued my interest enough that I actually took a calculus based physics class in college where I did very poorly on the classwork but really enjoyed the lab part (not so much the log book) and playing with all the toys that were connected to various computers. I’d probably still do poorly, but I’d go back and play with all that stuff again in a heartbeat. There has been a special place for the science of physics in me ever since.
 
Randomness:  Got some sun on the back patio with my work clothes on while typing some of this. Add to my working outfit my old grey/orange New Balance 481 which were replaced by my new grey/orange New Balance 481 which replaced my previous grey/orange New Balance 481 (I can’t remember, but I’ve had a lot of pairs of this shoe through all its versions) which I believe finally ended their run a while ago and present somewhat of a crisis when I have to think about finding a new model/colors of shoe. But my latest ones are fairly new, so, that along with my tendency to wear them out, should put that crisis off for a bit, and no, I don’t believe I’ll ever give in to actual white New Balance shoes.
 
It’s cool that cats and dogs kinda know how doors work. They don’t go to the wrong sides and such. I just noticed one day that they anticipate and come and go through the right sides even before I open them up.
 
Ceiling fans are the best especially as it starts to warm up in the South. My latest streaming adventure is How Do They Do It? It’s pretty much just a combination of the other shows I watch that describes some process of how things are used or made. The name seems a little awkward to me, but I’ve tried my best to move past it even though they insist on saying and showing it multiple times during each show. Some good ones so far have been earthquake-proof buildings, cowboy hats, desalinating seawater, assembly line robots, manufacturing propellers, soy sauce, and cruise ships. We finished the Fallout series on Prime and really enjoyed it. Really hoping for and can’t wait for a second season already. We are still working our way toward the 12th and final season of Big Bang Theory.

April 17, 2024

First, a big thank you to the anonymous person(s) who sent a package of stress balls and a pound of Atomic Fireballs from Amazon. I like the variety of stress balls and have put them to good use, and I’ve had to limit myself to 2 fireballs each time, so I don’t just empty the bag in a few days. 🙂 April is (has been) basically my month off from treatments, scans, appointments, etc., and it’s going pretty well. After a little over a week, I noticed that I’m having less pain so it looks like most of the discomfort I was feeling was from the radiation treatments. DeeGee and I noticed some browning around my waist from the treatment but it hasn’t seemed to cause me any problems. Since noticing less pain, I’ve learned that it’s not exactly best practice to just stop pain pills because my brain says, “Why not, you don’t need them any more.” My body followed up with quite a few things that pretty much made me feel sick and put me on the couch for a day before I realized what was happening. So, I’ve learned that tapering off of them works best for me and now the worst of it I believe is just some watery eyes occasionally but I guess that could be the pollen, too. It’s nice not to have pain a part of my daily life and only some occasional discomfort. I’m hoping the radiation keeps working through the month off like my doctors have said and that my main rectal tumor has been at least damaged and shrunk by the treatments. More scans will start up in May and we’ll decide where we go next from there.

For now though, I’m really just trying to enjoy a month of not really thinking about it often and enjoying time doing things. Right after Easter, I got a few garden plants in the ground (early for me). That was nice because I didn’t have anything last year because I was behind and not feeling good and then everything just kinda landed on me and a garden wasn’t in my list of priorities. I’ve had a garden of some type ever since we’ve been married. It started out with a good size layout, and long story short, there was custom irrigation and custom made tomato cages that I built when they got about 6-8 feet tall. Turns out you can also pinch them off, I learned that in later years. It has moved around over time and now I’d call it an old flower bed garden that’s close enough to tend without really having to put a lot of effort into it. It is close enough to remind me it is there, so I don’t forget. Plus, it makes me happy to see. I held back and just bought enough to have correct spacing this year. Three tomato plants of different varieties and hot versions of banana and cajun bell peppers (I’ve never tried the hot bells before) along with what is supposed to be some type of giant sized jalapeño that I thought might be interesting. I’ve never liked a lot of chemicals and sprays on my plants, so I try to keep them organic and to a minimum, but this year I did add some organic fertilizer as well. I’ve never been a soil sample taking kinda guy, but I have occasionally mixed some of my own kitchen scrap compost into this area over the years. I’m more of a try to keep an eye on it and take what you’re given kinda gardener. Although, I do battle the horn worms every year without fail. That kinda feels like a natural thing though. I’ve even been after them at night with a flashlight before. I also find pleasure in the mixture of some of my own tomato cages I’ve kept for years and some that are actually 3 generations old as well. I like what my garden produces and occasionally eating stuff right off the vine, brings back really good old memories (now you also know why I try to resist chemicals, too). I really should grow a few spring onions to eat out of the ground because pulling and peeling those and eating them sometimes with a little salt is literally my first gardening memory and they instantly take me back to that anytime I eat a few from the store like that.

We also got our annual porch ferns which I like to take care of every year and see how long and how big I can get them (not that it’s a competition with myself only in that it kinda really is). This year they’re getting a little fertilizer, too, and we’ll see what difference it makes. A little while after all that I planted some of the catnip I rooted to fill out a second big pot and start on a third for the cats. That seems to be going well. At some point, I think I’ll create a bed of it for them to enjoy, too. I started a handful more cuttings to keep it going as well. I started a few rose cuttings, too. But those are kinda hit and miss. Mostly because I miss thinking about taking care of them at some point and they die. However, I have grown 3 successful bushes from rooting cuttings and that I get new cuttings from so at least I know I’m capable of doing it as long as I can remember they exist through the whole process. 🙂

Feeling better has let me help with a few projects around the house and put the work clothes to good use again (gardening did that, too) so that’s felt nice as well. Sarah-Lauren and Adam brought me some comics from the Georgia Comic Con in Columbus when they went and that was a nice throwback to my old comic book days. A couple with holographic covers, a Batman, and an Iron Man that’s a little older than I am (with all the great old ads in it like Grit). I haven’t read them yet but I have felt and appreciated all the different types of paper, print, coatings, etc. that they have along with the lettering and artwork. There’s really nothing like actually holding printed things someone made a few years or a few decades ago that are still around. I’ve read on-line comics but they will never have that feel for sure. So all in all, April has been a pretty good month so far, and I’m hoping to finish it up at least as good as it’s been if not a little bit better.

Current Interests: Mysteries of the Abandoned Seasons 1-5+. I’ve discovered most of these abandoned places will fall into a couple categories: war (especially WW2) and mining. I enjoyed the Shukov Tower episode. How It’s Made(still) I enjoy the ones with automation and that show a good bit of some manufacturing process especially any with conveyor systems. Seasons 1-3+. Ghost pepper and regular peppered beef jerky. Easter candy. LEGO Boba Fett’s Starship Microfighter. Big Bang Theory Season 10.

P.S.: The Amazon Fallout series. 😀 My second favorite game of all time (first: Tetris) I’ve been fascinated especially by the lore and canon of it since the first game in the 90s through Fallout 4 which I logged hundreds of hours in to Fallout 76 which I’ll say is still ok at best. But the series has been great with what we’ve (DeeGee is watching it with me) seen so far. Has a great feel to it and stays reasonably authentic while hopefully being able to interest people who have no idea about its history, too.

April 4, 2023

David had a CT scan today to check on the fluid around his liver that showed on the last scan. This scan was ordered by Dr. N so it was scheduled at Piedmont Atlanta. If the fluid around his liver was still collecting then Dr. N may need to go back and put in a drain. The scan took less than 30 minutes and we got the results about an hour later. The report showed that there was still some fluid collecting around his liver at the resection site but it was less than on the previous scan. The scan also showed “an indeterminate hypodense lesion anterior to the collection area which was not definitely seen on the prior PET/CT” (February 29). “Short term follow up is suggested”. This is concerning for us of course, and after reading this, we definitely had questions. I wanted to start calling doctors but David wanted to give them time to read the scans and reach out to us. I went into research mode, and as usual, ended up feeling even worse. Basically, it could be more cancer or it could be something from the surgery. What scares the hell out of me is that it didn’t show up on the PET at the end of February.

The next day, I reached out to Dr. B via the patient portal and a nurse responded to the message saying Dr. B read the scan and was ordering an MRI for the liver and the schedulers would reach out with a date. We already had an appointment at the end of April for a rectal MRI and the nurse stated he would try to get the two done at the same time. The date for both MRIs is now May 1. We still plan to see Dr. C on May 2 to discuss moving forward with colon surgery. Of course, all of this will be subject to what we find on the MRIs. We also heard from Dr. N’s office, and Dr. N said he would continue to watch the fluid collection, but he was not inclined to put in a drain right now. He wants to let David’s body try to absorb the fluid. Regarding the lesion, Dr. N ordered another PET CT with Dotatate scan and it has been scheduled for May 31. Insurance will only allow one every 90 days apparently.

So yet again, we are waiting to see if we will be sidelined one more time by the unpredictability of this horrible cancer. It has been some tough days for both of us. We had been looking forward to regaining some sense of normalcy and reconnecting after the six weeks of radiation and before the next possible procedure while his body was healing from the radiation side effects. David has been looking forward to the prospect of having the tumor removed once and for all. So now, with this hanging over us, any normalcy seems difficult to achieve. If anyone knows the secret to how to live life “normally” through this, I am open to those suggestions.

Meanwhile, David has been able to stop his pain medication and has been having some better days physically since the radiation is over. He has laughed more and been in better moods than he has been in a while. This makes the recent report doubly aggravating. I go to bed each night, wake up each morning, and spend most of the day whispering “it can’t be more cancer. It has to be something surgery related. Please.”

April 2, 2024

David had an oncology appointment today with Dr. B. He had labs done and numbers look pretty much the same as they have been. His CEA was down to 5.9. Not very reliable in his particular case but still lower than it was, so we will take it as a good sign. His hemoglobin was good, and I asked about an iron test since one had not been done in a few months. Dr. B said while iron testing is good it isn’t as reliable as Ferritin testing and that is what he looks at each time. He is the Blood Guy and levels are good. He explained iron levels can fluctuate and can be affected by something you ate the night before. If you had something high in iron, it would show in your blood work but wouldn’t necessarily be the most accurate reading. David’s glucose is trending higher than usual, and I am watching his kidney levels. Looking at his labs online, Creatinine has been low. Higher would be more of a concern, but I would still be more comfortable seeing it in range. I have asked about it a few times but it doesn’t seem to be as much of a concern than if it were high. Carbon dioxide is low this time and we have not seen that before. Good to document it and ask about it next time. Some results are available in the office and some are available the next day. We can see them all online so we really like that. Not sure all doctors would appreciate my backseat questioning. Fortunately, we have some great ones that are good drivers and can still manage the anxious children in the backseat. They all entertain whatever we want to ask.

David is experiencing more neuropathy and Dr. B said it could be residual effects from the treatments. Dr. B said effects of radiation continues weeks after treatment ends so he would order an MRI for a month from now and we would check back in with him to see where we are. We discussed wanting to move ahead with surgery and that Dr. C had indicated to Dr. Wa that he was ready to do so. He said to go ahead and make an appointment with Dr. C to discuss removing the tumor. We understand the reasons why we took the treatment path we did and even with risks involved, I know the one thing David has wanted through all of this (aside from not having cancer at all) is to have this tumor removed so he can get on with living. After the appointment, Ms. Daisy and I headed to Piedmont Atlanta to pick up the contrast he has to drink for the CT scan on Thursday. Days like today wear him (and me) out more than they used to.

David starting managing his pain with a different medication and it allowed him to feel like doing more things this week. He even got a few tomato and pepper plants in the ground after Good Friday. He hasn’t felt like doing things like that in a long time. It has been a pretty good start to the week except for having to go to Home Depot. Should husbands and wives be allowed in that store at the same time?In fact, just ban me all together. I can do irritable toddler foot stomping imitations from the car instead of following him around in some chaotic circle asking “can we go nowwww?” Seriously, how many divorces or break ups occur due to joint home improvement store shopping? I bet the number is high. Someone should research that. I would venture to say that people that have no idea what I mean do not shop with their ADHD partner in one of these stores. If you do, then warmest regards and best wishes.

Current activities for me: driving Sheldon…I mean David around, hauling around Gracie the emotional support blanket, going to appointments, working, driving David around, feeding pets, deciding what to eat, researching cancer things, following David around, watching David pick out plants, watching David look at pieces of wood, watching David look at fertilizer, telling David where something is, watching David ignore me, wondering why there are so many types of tape, googling how to get banned from a store, and Big Bang Theory Season 9.

March 28, 2024

Last day of radiation. David had his final treatment, and we also got to see the doctor for discharge from treatment. Dr. Wa was not in so we saw Dr. G. He said there was a 4 week follow up appointment just to come back and check in to be sure things are going ok. He said if we needed them sooner to not hesitate to call. David left thank you cards for the techs in the back and the nurses and receptionist up front. They presented David with his radiation graduation certificate, and he was allowed to ring the bell marking the end of a difficult milestone. I read a very fitting Big Panda and Tiny Dragon thought for today while I was waiting for him during treatment. It has become clear that David is definitely my Big Panda.

Fun Fact: The bell ringing tradition started in 1996 at MD Anderson. A rear admiral in the U.S. Navy, Irve Le Moyne, was undergoing radiation therapy for head and neck cancer, and he told his doctor that he planned to follow a Navy tradition of ringing a bell to signify “when the job was done.” He brought a brass bell to his last treatment, rang it several times, and left it as a donation. Later, it was mounted on a wall plaque with the inscription:

Ring this bell
Three times well
Its toll to clearly say,
My treatments done
This course is run
And I am on my way! – Irve Le Moyne

Following Le Moyne, bells started popping up in treatment centers across the U.S., and the tradition of ringing a bell three times after a patient completes their rounds of radiation and/or chemotherapy was born.

March 25, 2024

Boy were glad to see the start of the final week of radiation. We got to the office and noticed more people in the waiting room than usual. We waited a bit and then one of the techs came out to tell everyone that the radiotherapy machine was down. They were waiting on a technician so radiation was cancelled for today. Because it was Monday, he said we could still wait and see the doctor like we usually do. He explained this happens from time to time in treatment locations. They just add another day onto the backend of your treatment schedule. We were a little disappointed that it would mean treatment would continue to next Monday though. We did see Dr. Wa, and he said he had spoken with Dr. C (the colon surgeon) regarding the treatment progress. Dr. C said he was ready for surgery when the team was. This was good news to us as David’s preference is still to have this tumor removed. This also means that because surgery is a possibility, David would get a few less radiation treatments than scheduled and with the extra day added from the machine being down today, it would mean he would finish up on Thursday. Also good news to us. Dr. Wa explained they would do a “boost” over the next few days which would focus more of the radiation in an even tighter targeted area. He also said using the word boost is sort of a misnomer because this doesn’t mean they increase the amount or dosage of radiation you are given during the treatment. Radiation continues to work over a fews weeks post treatment and side effects could last for years in some cases. We hope that won’t be the case with David as he is in a good bit of pain daily and has started to experience some neuropathy in his fingertips and feet. We hope this will subside once he is finished with the Capecitabine (oral chemo). David also has radiation burns but he says he does not feel them. His blood pressure has been staying normal but his heart rate is running high and can mostly be attributed to the pain he experiences.

One of our very good friends wanted to hold a fundraiser raffle for David and asked me about it. We were touched she wanted to do this but also apprehensive for it to sound as if we were begging for money. We are weird like that. We decided in the same vein as letting people in, we would go ahead with this. She engaged a few other of our friends and classmates who were generous with their time and talents also. The raffle ran for a few weeks and the drawing was held this evening at our 30th High School Class Reunion. We appreciate everyone who helped sell tickets and secure the raffle prize. David and I did not attend due to his lowered immunity but we both were overwhelmed with the outpouring of support from the people we have known our entire lives to those we don’t know at all. This amazing effort goes a long way to help ease some of the financial burden people like us face with a cancer…. (Pop quiz: remember that word from way back in the beginning?) peregrination. On the heels of this raffle another dear friend is currently working on a silent auction event with proceeds going to David as well.

To be honest, I always try to give something to these types of fundraisers but also I never fully understood or gave much thought to the costs associated with cancer for things we never imagined. And yes, we have insurance but with all insurance there are premiums, deductibles, copays and out of pocket maximums. There are things they will pay and things they will not. There are approvals and denials and tons of time and energy keeping up with the whens and the wheres. There are losses of income from not being able to work, travel expenses, and additional supply expenses and pharmacy expenses, and labs, and scans, and surgeries, and genetic testing, and consultations, in some cases, specialty food expenses, and the list goes on. We were told that once we get to a place where the disease is stable, David will need scans every three months for the rest of his life. Have you priced a good MRI lately? Whew! If you don’t already know, I hope you never have to find out.

People have been so generous and caring and wonderful and we couldn’t be more grateful. So to Jennifer, Tracy, Barbie, Boone, Tim, and Tori, and to all of the people who donated to this family’s fight, thank you so very much from the deepest part of our hearts.

March 22, 2024

Cancer has taken a lot from me. It feels cliche even to write but it’s true, it has. From the beginning, it slowly pushed on the brakes of my life. Sometimes things changed quickly, other times things just slowly glided to a stop. At first it was hard to even tell. There are so many changes so fast and so many expectations that I hardly noticed or figured things were just temporary. First, my classes were postponed then canceled because of tests, appointments, and follow-ups. Then, my ability to even predict my schedule was washed away by more of those things along with surgery, recovery, chemotherapy, and anything else in-between.  Don’t get me wrong, I was/am very lucky to be able to stop and do all of these things with the support of family and others. Given the opportunity, I’d do the same thing again, too. I remember thinking that just after this next recovery period things could start getting back to whatever my new normal would be. It was around the third or fourth change to my treatment plan when I realized I was more along for the ride than I was driving. Of course, I could still make all the decisions, but I wasn’t going to trade putting off treatments just for some stubborn attempt at control. I’m sure DeeGee could describe it better, but I felt it creep into my personality and change it. 

Shortly after cancer was even mentioned, I pretty much lost a weekend to thinking the worst thoughts I possibly could about treatments and outcomes. After a few days of that, I promised myself never to do that again, and I haven’t. But the feelings still stick around and occasionally haunt me. I can feel it cast its shadow over me. As time passed, plans changed, things were switched around, postponed, and canceled. I adjusted to this as my new life, at least for now. Then came the side effects. Fortunately for me, the side effects have not been too bad but still noticeable. A daily reminder that things aren’t as they were. I’ve lived with some amount of depression most of my life and have had plenty of meds and counseling on it, but I felt it set in, too. Gone were the things I found fun no matter how I tried to do them. I went from a person who couldn’t wait for a shower to start his day to actually feeling sick at the thought of the water touching my skin.  Luckily, DeeGee was around to keep me on track and pushing forward every day on that and more. My love of drinking water vanished and the thought and taste of it turned my stomach. Needless to say, that and everything else are the last things you need to have problems with during cancer treatment when your body needs more care and attention, certainly not less. Currently I’ve been able to keep better track of my water intake and make sure at least most days I’ve met or exceeded my goals. In the beginning, food lost its meaning in every shape and form. Not just based on fears of eating things that would cause what I’ll generally describe as lower abdominal discomfort (sometimes intense pain and bleeding) but also that it was just something I had to do to survive day to day.  I watched my weight drop like I’ve never seen in my life, and for the first time, I had to put a lot of effort into eating just to try and stop the weight loss before I could even think about trying to gain weight.  Fortunately, I’m doing much better in this area now and seem to be able to maintain a reasonable and steady weight.

Then there’s the clothes. When all this started it was my regular summer standard of cargo shorts and a t-shirt. That went on for at least part of the summer, but as more and more appointments came and went with more exams it became workout shorts and a t-shirt. As late fall and winter came it became workout pants and a t-shirt. I’ve never been a fan of workout pants, but I can’t argue with the fact that they’re easier to deal with when you know you’ll need to change into a gown or slide them around. Which brings me around to today and the title of this post.  When I’m feeling bad and have to rest, it’s my usual house clothes I turn to, but I try to add one more outfit to the group when I can. Even though I can’t do much if any actual work due to radiation and surgery recovery, when I can, I try to change out of my house or appointment clothes and into an old pair of work jeans and a work t-shirt, with my old belt and some suspenders for good measure along with some old work shoes. Then, I go out on the back patio to read, write, or otherwise occupy myself for a little sun. Sometimes,  I will sit on the front porch if I just want some fresh air. It makes me feel better.  Worn denim and a t-shirt, that is a few years too old, feel so much better than elastic banded pants.

Current Interests: Timelines of Everything (ages 9-12 but still darn interesting) I like finding out things have been around longer than I’ve thought or even better that things are newer than I thought. – Medical Bill Spreadsheets (always a good time, but also let me play with a few ideas then remind myself that simple and to the point is almost always best). – Drinking more water. – Gotham (tv show) Seasons 1-3 so far. I’m conflicted about this show for sure. The story and storytelling can be very tedious at times, but it’s actually created interest in some of the characters I thought I had no interest in earlier. I like the set design. Love the mix of art deco with midcentury touches with 90’s technology sprinkled in and around just for good fun. That must drive anyone looking for a time stamp absolutely insane, but since comics like this generally don’t have a specific time, I think it makes it that much more fun. Which brings me to the cars. 😀 That’s really gotta drive people nuts, but I think it’s another great mix. Some great older cars mixed with a lot of plain boxy non-descript models from the 70’s and 80’s. Anywhoo… I’m making my way through it. I guess I’ll go about 50/50 so far irritation and pleasure with it.

March 18, 2024

4 weeks down. 2 weeks to go.

Another Monday another start of a week of radiation. We saw Dr. Wa today. David told him he didn’t feel very well this past weekend. He was also experiencing a good bit of pain this morning and was restless and uncomfortable riding to radiation. Dr. Wa said he had not yet studied the scan from Friday but as he was just glancing at the scan, he would estimate the tumor has reduced in size a bit. He said some cases show more of a shrinkage by this stage of treatment and this wasn’t a surprise to us considering David is still having enough pain to have made us question if this was working at all. Dr. Wa also said we wouldn’t really know the full effect of the radiation until after treatment was complete. He said this was also a reason why any surgery (should that be a plan) usually came 4-8 weeks following treatment. We would have preferred to have heard “wow it is already significantly diminished” but David and I will take some shrinkage over no shrinkage. We knew what we were up against going into this when the chemo stopped being as effective as we wanted. David was still restless on the way home, but he did manage to drift off and nap most of the way back. He was a little nauseated after waking up, but it subsided after we got home. He sat outside on the patio reading for as long as he could stand the pollen collecting on every surface. I can tell he feels a bit worse than usual today, but he enjoys sitting outside in the sun. He is eating although he does not have much of an appetite and it is hard to push the fluids when he can’t stay awake. He still manages to drink more water than I do.  

March 17, 2024

Today is David’s birthday. He was born on a mild March Monday on St. Patrick’s Day in 1975, and while there doesn’t seem to be any ancient Celtic or Gaelic legends about St. Patrick’s Day babies being born lucky, I consider it to be a pretty lucky day for me.

Last night while waiting for sleep, I was having these sad thoughts that often trample around my mind’s garden such as how many more birthday and anniversaries David and I would get to celebrate together. I awoke this morning plagued with the same intrusiveness, so I decided to not give those thoughts the power they were demanding today. Instead, I worked on a gratitude list of things about my favorite person while he was napping on the couch.

-His parents for having him

-His sense of humor

-His beautiful mind

-His willingness and skill to fix things

-His unwillingness to let me feel sorry for myself

-His natural ability to be a great Dad

-His smile and dimples I can’t see because of the beard but know they are there.

-His laughter when watching the most ridiculous movies and tv shows on earth

-His introspectiveness

-His back rubs

-His willingness to listen

-His enthusiasm when he teaches a class

-His telling me, in detail, about the dreams he had while sleeping

-His simplicity

-His adaptability

-His social awkwardness

-His willingness to do what it takes

-His orange shoes for no other reason than they make him happy

-His secret feeling of pride when he hears indirectly of a compliment made about him

-His uncomfortableness when he is complimented directly

-His bear hugs

-His patience

-His countless rewatching of movies he loves and can quote like Big Lebowski, Pulp Fiction, Dark Knight, O Brother Where Art Thou  

-His sarcasm

-His made-up dad jokes

-His compassion and non-judgement

-His selective forgetfulness

-His quick thinking

-His love for animals (and our clowder of cats)

-His sensitivity

-His disbelief that he hasn’t been canonized for taking out the trash

-His silences

-His excited explanations

-His catching an insect and putting it safely out of the house without harming it.

-His disproportionately skinny legs

-His ability to build sand sculptures, and Lego, and anything he wants

-His voice

-His brown eyes

-His love for beef jerky, hot, hot sauces, and childlike joy for atomic fire balls (if he can ever find them)

-His positivity

-His fondness for Taylor Swift

-His admittedly knowing all the lyrics and singing along to Taylor Swift

-His lack of rhythm

-His loyalty to the Atlanta Falcons no matter what

-His creativity

-His knowing exactly the right things to say and do

-His strength (both physical and mental)

-His kisses

-His wonderment each day as to why he is so tired (while having Stage IV colorectal cancer)

-His smirk

-His acceptance

-His analogies

-His refrigerator notes

-His generosity

-His stopping to move turtles out of the road

-His shyness

-His cold feet

-His reaching to hold my hand

-His love for cars and shows about cars

-His hyper focus

-His sense of direction

-His spaghetti, banana pudding, anything grilled, pancakes, and cheese fries

-His low-key competitiveness

-His courage

-His unabashed nerdiness

-His advice

-His writing and bad spelling

-His friendship

-His loud heart beat

-His uncanny ability to always eat the one thing I was saving for myself in the fridge

-His silliness

-His natural optimism

-His support

-His always, without fail, letting me know me when his ears pop like at higher altitudes or just for any reason at all.

-His random ticklishness

-His yelling at the football players on TV on Football Sunday, Monday, and Thursday

-His unashamed choice of huge geriatric intended sunglasses just because they fit over his glasses.

-His almost stereotypical French nonchalance

-His sharing of social media videos he thinks are interesting or funny

-His surprise and amusement every single time when he tells me something of interest he read or saw only for me to say yes I know because I AM THE ONE THAT TOLD/SENT YOU THAT!

-His beard (even though I miss seeing his whole face)

-His sometimes maddeningly weird exuberance for beating me to checking the mail each day

-His unwavering “it will be ok even when it isn’t”

-His willingness to try anything at least once

-His complete okayness when I don’t have the right candles for his cake and I improvise

-the other countless things I can’t think of right now or will keep for myself

Happy Birthday David. The sun shines when you are around. You make life worth living and are a reason that someone keeps getting up in the morning.

March 15, 2024

After treatment this morning, David had the cone down scan to prepare for the radiation boost that will start on Monday 3/25. He said it was similar to the first planning scan he had when he was getting set up to receive radiation. This cone down scan and probe inserted into his “rear USB port” is used to measure the tumor to adjust the radiation beams for the final week of therapy to maximize the radiation to the tumor bed. David said they remarked his “tattoos” with a sharpie, and we were on our way about 30 minutes later. We stopped and had an early lunch and had a pretty good afternoon watching it rain.

March 13, 2024

Today we saw Dr. B for labs and an appointment. Both PAs were out of the office so Dr. B was left on his own and was running behind thanks to the schedulers who he said had no mercy on him. We spent a while in the office waiting so David regaled me with the fantastical exploits he had in his dreams the night before. He frequently entertains me with the most Argonautic stories from his dreams. I really need to record these. Dr. B had not seen David’s PET scan report because they are on a different charting system than the EPIC system that Piedmont uses. He took a few minutes to read it and commented that a negative scan was good, and the neuroendocrine features of the tumor could explain why the chemo wasn’t as effective as we needed it to be. Neuroendocrine tumors do not typically respond to systematic treatment. He said that after radiation, David would have more scans so the team could make a decision on the next steps. Dr. B said there was one more DNA test he could order for David’s blood that may help with where we stand. David previously qualified for genetic testing so Piedmont had already sent blood work to an outside genetics’ lab for examination.  We got a detailed report back that did not indicate a genetic predisposition to this cancer at least given the limited family history we were able to provide. At the same time though, it is recommended that Sarah-Lauren will need to undergo her first colonoscopy at the age of 38. The recommendation is 10 years prior to the age David was at diagnosis. Dr B ordered DNA testing early in the Fall and that report suggested chemo drugs that may or may not be beneficial in treatment of David’s specific type of cancer according to the make-up of his cells. That information was considered when we went through chemo in the Fall of 2023. Dr. B explained that testing was not complete on the initial tumor specimen due to it being somewhat degraded, so he would recommend additional molecular testing on the tissue obtained from the liver surgery since it was a much better specimen. Dr. B said the radiation side effects tended to be worse at the end of radiation so he would see David again for more labs and to assess the side effects. He told David it sounded as if he was doing as expected. David’s labs showed his hemoglobin continues to slowly rise but it is still considered low. Liver enzymes appear to be getting back into range as we are entering week 6 of liver recovery.

March 11, 2024

Week 4 of radiation and it is Monday again, so we saw Dr. Wa after treatment for a weekly check-in. We discussed David’s pain level and the upcoming in office cone down scan for the radiation boost he will have during week six. Sometimes, a patient that meets certain criteria (age, margin status, and cancer grade) will receive an extra dose of radiation after the regular therapy is complete. This is called a boost or “cone down”. We talked about this before radiation began and have already agreed to the additional week of treatment based on Dr. Wa recommendations. I asked Dr. Wa if he could tell if we were making progress with the treatments and he said the scan on Friday will give him a better idea of where we are so we should be able to discuss that next Monday. He spoke about us possibly meeting with our colon surgeon as treatment is wrapping up in order to see what our options are. There will be more scans to get a better idea of what we are dealing with once treatment is complete. Our hope is to see very little if any tumor left.

The radiation fatigue is pretty constant for David. Fatigue felt during radiation treatment is different from the tiredness we feel from everyday life, and it usually does not get better with rest. It can last a long time and can get in the way of daily activities. It will usually go away with time after treatment ends. He gets nauseated around the same time every evening 6:30-7:00pm. So much so, you could set a watch by it. We usually try to eat dinner early and then we basically go through the same thing each night. Eat, relax, bathroom, pain and nausea. He can usually knock out the nausea with his anti-nausea meds, but the pain always gets worse before the any medication has a chance to kick in even when he tries to get in front of it. By the time it eases up enough for him to relax a little, he can then usually can start to think about falling asleep only for us to start it all over again in a few hours’ time. David has weekends off from treatment and oral chemo (capecitabine), but these two days seem to be worse on him than the days we go to treatment. We don’t fully understand why that is. The pain and side effects he has experienced with radiation have been the same since we started this journey, so it is difficult to know if the pain he has now is from radiation or still from the tumor. It keeps us in a constant questioning state. Incidentally, I have started on another Big Panda Tiny Dragon book and David picked up the one I just finished. After reading some pages he said so…I’m Big Panda and you are Tiny Dragon huh? And size has nothing to do with it 🙂 I love these characters and the profound and relatable lessons they are teaching me each day while I wait for him during treatment.

Not the usual long term or even short-term uncertainty that comes with cancer. I think people are generally familiar with those.  There’s always another test and result to be scheduled and discussed.  This is more like day-to-day uncertainty. Where is this pain coming from? Is it a side effect of treatment or a direct result of the cancer or both? Do I need to go to the bathroom again? Will I be able to pee? When was the last time either of those happened and how much and what did it feel like? Do I need to eat? If so, what and how much?  Lots and lots of things I never even considered a year ago are things I think about on a daily basis now.  I feel ok sometimes, is it because I’m on time with my meds or maybe it is just one of those times I don’t hurt or have any particular feelings.  I had one of those not too long ago that I still remember. About one solid hour where there was no pain or discomfort. I was able to just sit in a chair outside and read and use my laptop.  I’m glad I caught it because I try to think back and reflect on it in a positive way as often as I can (I don’t always succeed, sometimes it’s when I’m feeling sorry for myself).  Much like a week late last fall in a break between chemo stuff all my bathroom issues seemed as normal as they had been in months.  Then for one reason or another things will slide back to what is my current “normal” with some kind of pain or discomfort. I’m not exactly sure what this post is about. Maybe it’s just to say that having and being treated for cancer for me most times means that I’m not certain about much at all.  If nothing else, several parts of this journey have taught me that being certain about something (good or less than good) isn’t a guaranteed thing, and honestly, it’s not the easiest thing to deal with, but it’s alright, I guess.
 

Week 3 of radiation starts today. I’m inside the non-exact windows of time they give you for the side effects to start (8 treatments, two weeks, two and a half weeks…). So basically, I just add that to the side effects of the various pills I take on radiation days (12 ea.), to having cancer in general, or just chalk it up to it being what I’m feeling on that particular day.  I did have a couple of days last week that I felt like were good examples of the extreme fatigue side effect. Pretty much any time I closed my eyes I fell asleep for at least an hour or two or more.  Didn’t seem to matter if I was in the car (I haven’t driven much, if at all throughout this) or at home, I’d just be out like a light and maybe wake up for a few seconds then be right back out again. I figured it was best to chalk it up to my body needed the rest to repair and stuff, that works for me.  I’ve been afraid and paranoid about being constipated throughout this whole thing even though it’s never been a problem so after a week with a bit more pain and pills than I had before I gave a few of my doctor’s recommendations a try.  Let’s just say that I’m no longer that concerned with constipation and that it’ll probably be a while before I have that concern again. 🙂
 
I’m a bit less intimidated by the radiation machine finally.  We’re not close friends yet, but I feel a little less like it wants to crush me like a bug when the arms move in, out, and around. I do wish there was some kind of light or even a little heat lamp that let me see or feel it doing something as the radiation part orbits me though. I’m not really feeling a lot of relief from it yet, but I can tell that it’s working in other ways.  So far, my blood work and weekly check-ins with the doctor are going well, too. I still have some general swelling and pain in my lower abdomen that could be caused by the tumor or be a side effect of the radiation. Either way, I have a couple new prescriptions to try to deal with it more effectively so I’m looking forward to and hoping that they will work. I also finally broke down and got a doughnut pillow and now it stays with me inside and in the car. I never wanted one before and certainly never wanted to find out that it actually feels pretty good but here we are.
 
All in all, I’m settling into the daily radiation routine with weekends off as time goes on.
 
Current Interests:  Watching it rain. Organizing prescription bottles (I write big letters in Sharpie on the tops so I can tell what they are looking from the top down) and taking pills. I like to put them in little medicine cups and pretend like they’re being dosed out to me sometimes. The Dan Patrick Show (RIP NFL Season 2023-24). The Saint (s5) I’ve been watching it awhile across various platforms. How It’s Made (s1) a favorite from when SL and I would watch it before school. Harley Quinn (aka Harley Quinn & Poison Ivy (s3e1)). Big Bang Theory s1-3. We started it over after watching the middle of it originally.
 

March 4, 2024

Day 11 of Radiation Camp and Mondays are see-the-doctor-day. Since Dr. Wa was out of the office, we saw Dr. G. He checked in with David about symptoms he is experiencing including urinary issues and increased pain. He prescribed some new meds that we hope will help. Inflammation is expected as the bladder and colon areas are involved with his radiation and it can be painful. David has not had much of an appetite but he continues to eat and drink fluids. Fluids are very important for cancer patients not just for warding off dehydration but also for flushing out chemo and radioactive materials.

David continues to be a little anxious during radiation but he is managing better than he did the first week. We think not seeing anything happen makes it worse and maybe he needs to see a huge laser show everyday to know he is being radiated or least be able to shoot webs from his wrists when he is done.

I have been reading Big Panda and Tiny Dragon and nearly every page was written for us.

I saw this today and thought it was so very accurate for any cancer patient and those who love and fight right along beside them. Here’s to all of us….

Pinned Post

My favorite color is dark blue and the ribbon for colorectal cancer is dark blue as well.  March is my birthday month (St. Patrick’s Day) and March is also Colorectal Cancer Awareness Month. So, this seems like a really good time to remind everyone to remind themselves and/or anyone around them to be aware and get screened for colorectal cancer (or any other cancer) as needed. I’ll post a link to screening recommendations and other info, but the most important thing (my opinion) that I can pass on is to make an effort to catch this or any cancer as early as possible.  That means getting screened as soon as it’s recommended or earlier if you have additional concerns, history, etc. It also means that someone will have to do some thing(s) that may be uncomfortable or embarrassing.
 
Here’s what I can tell you about my experience.  I honestly thought I had very, very bad hemorrhoids, and I found that horribly embarrassing to think about much less mention.  I most likely had some small internal hemorrhoids in my late 20s or 30s that caused some very minor bleeding, actually discussed them with my doctor, and found out it wasn’t of great concern.  Later on in my 40s, I had some similar bleeding and really didn’t think much of it, more than likely it was more of the same thing.  However, eventually (there’s no good way to put this) I felt what I assumed to be hemorrhoids “pop out,” and I’d gently push them back in.  I read up on them and used various creams and whatnot and life went on.  I never mentioned this to anyone. Sometime around the fall of 2022 it seemed to get worse. There seemed to be more of them and more blood which made it that much more embarrassing for me.  I continued to push on until after the first of 2023 when it started to affect my bowel movements.  I had to go more and it was much more uncomfortable when I did.  I knew something wasn’t right and told myself I’d bring it up at my next physical, told no one, and marched along.  Finally, around March of 2023 it started affecting what I could eat. Mainly it affected my eating hot or spicy things.  I could measure the time from when I ate something spicy to when I’d get the absolute worst burning pain in my lower abdomen.  Being very, very stubborn, I tested this way too many times “just to be sure.” Slowly it started to affect my appetite and I started losing weight. By late spring it was obvious that something was wrong, and I started mentioning it to DeeGee and we started looking at all the different colon conditions that could cause these things (there are quite a few). She finally convinced me (made an appointment and said we were going) to see the doctor about it even though I distinctly remember wanting to wait just a few more weeks to test out some adjustments in my diet.  I’m really glad I didn’t because by the time I went to that appointment I had lost enough blood over time that I needed a 2 unit blood transfusion with iron.  I had cut grass the day before and learned at that appointment that when I was resting and gulping air it was because my body didn’t have enough red blood cells to carry the oxygen I needed.  This is probably a good time to mention that in the previous months there had been a lot of blood in my bowel movements. Again, no easy way to put this, but I’m not talking about signs of blood like dark coffee grounds or something, I’m referring to straight up blood.  Blood that I had been too embarrassed  and too afraid to mention to anyone and most likely barely acknowledged myself.  There had been other changes too that I would describe as jelly-like.  All of this had been going on for months.  Again, during those months I had still convinced myself that it was really, really bad hemorrhoids and managed them as well as I could on my own.  I had assured myself that I’d discuss it with the doctor at my physical which could have been as late as the fall or winter and who knows if I even would have then.  I was even trying to make peace with the fact that I’d eventually have a colonoscopy at 50 (I was 47).  Honestly, I’m not sure I would have even done that at that age if I weren’t forced to.  I say all this to say how lucky I really am.  Because I’m so stubborn, and I was so embarrassed, I could have kept trying to deal with this on my own for who even knows how long.  If I was lucky, maybe I would have passed out around somebody from the loss of blood, and I can see that being one of the only sure ways I might have addressed it.  But I didn’t go that route.  I don’t feel like I went the best route, I wish I had brought it up a lot sooner and gotten checked a lot sooner. I wish I hadn’t thought I knew what it was and let someone else help me sooner and went to the doctor for an actual diagnosis.
 
So what does all this mean? How can I convince anybody to approach the embarrassing thing that they may have already developed a perfectly good (but wrong) explanation for to reach out and consider turning all that upside down? I suppose the short answer is that I can’t. I can only say that if any of what I described including the feelings or if you know or suspect any family history or if you’re 45 or older you seriously consider not only talking to your doctor but also getting a colonoscopy to find out for sure.  Here’s the part where I’m going to be honest about the reality of the situation.  It wasn’t easy for me to talk about any of this in the beginning. Having DeeGee keep notes and go with me helped keep me honest and be more straight forward about what I was experiencing. As I went through more and more steps it was hard for me to deal with everything that was happening and easy to get overwhelmed. Next, let me say that you should get a colonoscopy, period. No ifs, ands, or buts… 😀 But also let me be honest and say it’s not easy and it’s not comfortable. Going to a doctor with a lot of practical experience made me feel better about the procedure in general and confident in the results, but it didn’t let me avoid the reality of everything that needs to be done before to prepare for it or the procedure itself. All that said, I will be forever grateful that I did it when I did, and I’ll be doing it again soon and regularly. That’s just how it is. I’ll follow my doctor’s recommendations just like I do with any other procedure.  The only really good thing about it is that you’ll have straight information about where you stand after it, and you can help others by telling them that it might not have been pleasant but you did it anyway and consider recommending that they do it, too.
 
So that’s my post for Colorectal Cancer Awareness Month. My hope is that somebody reads it and considers having a discussion with someone and/or even considering getting tested for not just colorectal cancer but any cancer they may need to be tested for.

MORE INFO:

American Cancer Society Colorectal Cancer Info – information about colorectal cancer

American Cancer Society National Colorectal Cancer Roundtable – more info and resources for colorectal cancer

CDC Colorectal Cancer Screening Info – latest info on screening for colorectal cancer

February 29, 2024

David had another PET scan today at Piedmont Atlanta Imaging.

When we last saw Dr. N for the post op checkup on February 13, we received the pathology on the two tumors that were removed from David’s liver. The path showed that the tumors had neuroendocrine features. This news was concerning because neuroendocrine cancer is a different type of cancer than he was initially diagnosed with in his colon (adenocarcinoma) meaning David could have a second cancer. Dr. N ordered a PET scan with Dotatate (Gallium GA 68)  GA 68 is a radio tracer that is used with a PET scan to detect neuroendocrine tumors (NETs).

Initial treatment for a neuroendocrine tumor is to cut it out and that had been done, so we just had to wait for the scan to know if it was anywhere else in his body. For this reason, we decided to keep this news to ourselves until the results of the scan. We saw Dr. B in the following days and discussed the path report with him in depth. It was also agreed to continue radiation treatments as planned.

David and I went back to the imaging location where he had the first PET scan done in September 2023. They called us back and injected the GA 68 and he had to relax in a chair in a room for about an hour. He had a skull to thigh scan and was in the scanner around 35 minutes.

We received the radiologist’s report later this evening. Reports indicated “No Dotatate PET/CT evidence of neuroendocrine metastatic disease.” It also indicated the seemingly non-cancerous nodule that we have been watching in his right lung has remained unchanged. No one believes this nodule to be anything other than a common nodule that many people have in their lungs. It is just suggested that it be continually checked.

It was a relief to read that there was no further evidence of a NET at this point. While the colorectal cancer is still hanging out for now, we hope we are getting rid of it with every radiation day. Radiation 5 days a week is a lot on David. He is tired, tired, tired. He has experienced some mild nausea from the Capecitabine (oral chemo) and has started with some of the radiation enteritis symptoms now.

It’s been awhile since I could and felt like writing. First things first I’d like to thank the countless people who have helped out since this began and especially over the last month or so. Everything from thoughts and prayers to donations to unexpected kindnesses and efforts too many to list. Each and every one has made a difference every day. Thank you. I am more than well loved, and I feel it.

I’m also very appreciative to have less pain now than after surgery. Even with pain pills, the first week or so was definitely one of the most challenging things I’ve gone through. At times being in enough pain not to be able to move significantly or get up without help is a very humbling experience. Thankfully by the end of week 2 or so I can say that I no longer need either of my pain pills from surgery, and I can get around mostly by myself. This is a little more challenging time because I feel better but I still have to remember not to bend over or twist or pick up things over 7 pounds or so. It’s not ideal, but it’s a lot easier to remember that stuff when there’s a sharp jolting pain every so often to remind you that you’re not “ok.” All that said, I feel like I’m doing very well with my recovery and people and doctors around me seem to agree with that, too. I keep moving and try to walk some extended time daily to keep blood clots away (and to avoid the daily shots I would have had to take to avoid them, it’s a small price to pay).

My adventure with radiation started this week. Oddly enough it’s the quickest and easiest thing I’ve done so far, but it also seems to be one of the most anxiety inducing parts yet. I’ll explain. There are no needles, no tests, no ports of anything. Everything is done for me, I literally just have to lay down and be still for maybe 10 minutes at most (15 minutes in and out the door total). I lay down on the machine table, the lights dim, and the super nice people pull me into position and line up the Sharpie marks I have along my hip line to lasers that crisscross the room to get me into rough position. They’re great about saying what they’re doing and reassuring me in whatever ways I might need. Eventually they leave and that’s when it happens. The Machine starts moving. So far I’ve had enough scans to fill a binder and at least 3 different ways for each type of scan along with spending anywhere from half an hour to hours in machines but nothing has affected me like this. Before I continue, I should make clear that everything that follows is in my head. There’s nothing actually dangerous or really scary about this process at all. Marching on… two scanning arms come out to find out exactly where my tumor is in relation to the machine. As they move, unfold, and rotate around it’s hard for me not to think of some Terminator or Decepticon reaching around me. There’s no feeling or pain, just rotation all the way around me then waiting for the table I’m laying on to bump side to side and up and down for it’s final adjustments. When all is said and done they fold away and go back where they came from. Half way through my first time I had one of those cutaway fantasies you see in movies and TV where I saw my self just completely noping out of there, rolling off the table, and running out of the building. I feel like they probably would have caught me just on the other side of the 6 inch lead door with all the cool radiation warning stickers on it though. Maybe a minute passes before the hum/buzz of the radiation head starts as it begins rotating clockwise around me. Compared to the other heads this one is massive and moves slowly and steadily all the way around me. At some point the bottom of this head came into contact with something that left 2 good size scratches deep into the paint so I always wonder how that happened. But my favorite part is that whoever touched up these scars used the exact same color touchup paint as the original machine, there’s not a shade of difference which I find kinda amazing. Anywhoo. It completes one rotation, pauses, then starts its way back around me counter clockwise. During both rotations my mind can’t really get away from the idea of radiation being beamed into and through me even though there’s no feeling whatsoever. Literally minutes later it’s done and has started to return to it’s home position above me when the full lights come back on and the nice people are back to help me off the table, smile, and send me on my way. That’s it, nothing to it. In and out in less time that I’ve waited in the waiting room of other appointments. The only other different part is that it happens every single day five days a week and I have to take a handfull of chemo pills twice a day every day that I have radiation treatment. Honestly, I try not to think much about those, just count them out, double check, and then swallow them always with food. They say it can take up to two and a half weeks for some of the less pleasant side effects to show up so I’m not looking forward to that, but I am looking forward to it shrinking my tumor and having less bleeding and swelling from it. All in all for me it’s still worth it. Everything from the real pain that can last days and weeks to the completely in my head anxiety that lasts minutes.

Current Interests: Mannix Season Five, Young Sheldon, Benny’s Spaceship, Spaceship, SPACESHIP! Lego set that I’ve had 10 years before I started putting it together, Crazy Aaron’s Thinking Putty, Garry Trudeau’s Alpha House, Tig Notaro’s One Mississippi, Todd and the Book of Pure Evil with Jason Mewes

I started and stopped this entry so many times due to the humor. Some days I can find the humor in everything and other days, I just feel so defeated and sad. Sad isn’t a big enough word but that is all I have at this moment. Or maybe bigger than sad is what I should go with. I started writing this one on a day we both felt particularly good but since, we had some down days, feeling bigger than sad, and it just didn’t feel like I was being very respectful to him with my musings. Somedays I feel guilty for feeling ok. I suffer from chronic overthinkeritis and social phobias and didn’t want anyone that may read my thoughts to presume that I intend anything other than immense adoration and devotion for my person. He thinks this is funny, so I picked it back up when I felt ok about it and finally finished it.

I wanted to document what a day at chemo and after looked like. The 6 treatments that David received between October 5, 2023, and January 5, 2024 would last six hours per visit. He went once per week and this type of protocol has a recovery week in between treatments.

We had a brief overview of Chemo Infusion Resort during patient education and were told we could bring snacks, blankets, pillows, etc. But when it was our turn to take our first baby steps toward chemo, we really had no idea what to expect.  What would we do for six hours? How do you go pee and where? Do we take a backpack or bag or what? We didn’t want to look like newbies on the first day of chemo-gah! David has ADHD and as he grows older, the more restless he has become, so I knew I had to take things to keep him entertained. Having a husband with ADHD is not unlike having a toddler, and if you haven’t experienced this then bless your little heart. So, on the first day I dressed like a sho nuff Grand Canyon pack mule. I had an overloaded backpack and cooler along with David’s 15 pound weighted “emotional support blanket” that has gone everywhere with him since July 2023 and his little travel pillow. Did I say the blanket goes everywhere? I meant EVERY WHERE. They share a car seat. He has a heftier, full figured 20 pounder at the house that I am very glad gets to stay on the bed. Thankfully, Gracie, the emotional support blanket, has a washable cover. So off to tail gate at Resort Chemotherapy we went.

The first thing I noticed as I breathlessly hunch walked in like Quasimodo was that many people in there had a small rolling suitcase. Seriously. These chemo veterans were all bidding cheerful good morns all around while rolling around by me with the smooth silent whoosh of wheels. I felt like the worst prepared chemo support wife ever. At any rate, these comfy recliners are spaced around in sections and you are told which section to go to. You aren’t always in the same section and you don’t always have the same flight attendant mixing your chemo cocktails. David usually settles in to his chair while I am busy arranging the luggage in the .07 square feet of space around me while trying not to disturb the person next to us in their own less than a square foot of space. The chair has a table on either side and it folds out.  One side is used by the nurse for nursey things and David and I share a tiny camp table with one beverage hole that he insists on being the one to use for some reason thus leaving no room for a Stanley cup. But not really. I don’t have a Stanley Cup. I never played hockey in my life.

The nurse usually comes over about this time and tells us her name and asks if he needs anything like a warm blanket and a pillow to which David says “yes”. Remember that part up there where I said I have heavy Gracie the emotional support blanket and his travel pillow that he said he needed? Yeah. He does that.  

We usually arrive early in the morning and have lab work then meet with the PA (C) or Dr. B for a visit. The nurse accesses David’s port and draws blood for the labs and if everything is working normally, the port gives a good blood return and we know it is ready for business. After the visit, is when we head to the infusion room.

There is only one chair in each section that has a clear view of a tv. But it doesn’t matter because you can’t hear it anyway. Always tuned to a game show or HGTV. This is not sports bar. And I have never been able to focus on TVs in the doctor’s office anyway and usually they are too loud. Just as you get interested in Matt and Britany’s renovation then they call you anyway. Someone told me once that these channels are chosen to avoid any political or religious content. There is a cold and hot section of the room, but this also doesn’t matter because you are assigned a section before you even arrive. We always hoped for the cold section because we prefer the cooler temps like penguins.

Then it is time to just sit. Not everyone is there for chemo. Some people may be receiving iron or other supplements and may not be there long. Others have a different chemo protocols and may only sit for a couple of hours. Ours though, ours was six hours long pending everything went smoothly. We would snack and have juice. Sometimes, I would go and pick up lunch from the limited Chick Fil A quick serve counter in the hospital. I brought him ice chips and I kept his chilled booties and mitts on ice until time to ice him down during the Oxali meds. He ended up stopping this after about three rounds because he absolutely hated wearing those cold things and he said the difference it may have made with cold sensitivity afterward was negligible to him compared to the irritation of being so cold. We did Cirlce-a-Word and Cross Word puzzles. We played countless hands of UNO which he won most of because he plays all of his skips, draw 2s and 4s at once. We watched shows on his laptop sharing his AirPods so we could hear and we read on our Kindle but it was hard to concentrate for very long. We watched people come and go and tried to imagine what their situations were. We listened to the nurses chat about this and that and watched them decorate for Halloween and then for Christmas. Twice, David’s port was uncooperative and would receive the chemo but would not give a blood return. This causes the nurses to have to have him stand up and hold up his arms in certain ways and even put him in these whacky chemo yoga positions in an attempt to get the port going. This could resolve quickly, or in our case, it could set you back a couple of hours. Since the tricks of the trade weren’t successful in David’s case, he would then receive a medication called Activase which usually took around 90-120 minutes to work. Once they got the blood return, then we could proceed with treatment. On one particular day when David was going to receive iron after treatment, we were there over 9 hours. 10/10 do not recommend.

In the days following the treatments (called recovery week), because of the types of chemo David received, he would have various stages of cold sensitivity where we had to keep water and juices and other foods at room temp for him.

He experienced chemo fog or what some call Chemnesia. David has always had the most complex and sharp mind of anyone I have ever known. He just has that quick mental grasp of things. He explains many things to me that I don’t get, he reminds me of everything, he understands things immediately, and retains all of that knowledge and can spit it back out again at any time. I struggle with retention. I can read a paragraph, and five minutes later, I don’t remember it. This is one of the things I have always admired about him, The days following chemo left him foggy and forgetful. And even now, weeks later, he experiences a lot of brain fog and it takes him time to think about things. He has far away stares and when I ask what he may be thinking about, he says there was no thought there. He is forgetful and we have to work to help each other remember things. This has been a hard thing for me to see him experience because it changed the person he is. It is possible for your brain to return to pre-chemo function but because treatments are cumulative, meaning symptoms will build over the course of treatment, it may take time to regain what was lost.

David’s treatments didn’t cause total hair loss but it did cause some dramatic hair thinning. He wears hats most of the time, so I am not sure how much this bothered him, but he did mention a few times how much hair came out while he was showering. We joked that his beard seemed to have been immune because it is still as lavish and majestic as ever. It has also been sad for me to see because it just makes him appear so much older than he is.

David isn’t a quick-tempered person by any means, but over the past few months, I have noticed irritability and a lack of patience he never had before.

He didn’t have much nausea but he will get a twinge of something from time to time. He has prescription medication for that so one of those pills usually does the trick. He also tried peppermint and ginger chews and they seem to work well for mild nausea feelings.

What you poop, how you poop and when you poop along with passing blood is a big indicating symptom of this cancer. Poop has become a normal discussion and we absolutely hate it. Upset stomach is also a side effect of treatment, but he has dealt with these issues from onset, so it is hard to know what is normal for him anymore in that regard. I think the bathroom can sometimes be a man’s place for solitude and peace. And maybe not just for a man but for women too. A place where someone can’t or shouldn’t be disturbed for a small bit of time during a day. This was the case for David until he started experiencing the early symptoms. Since all of this started, he has said numerous times, that cancer took that from him too. David rarely has a full night’s sleep without some urgent need to visit the bathroom. The waking part of the day is the same. Colon and Rectal Cancer symptoms are not pleasant to discuss. David says all pride and dignity pretty much have to go out the window with this type of cancer.  He likened it to a similar thing I said while being pregnant. You just get to a point in the whole thing where it doesn’t matter who sees what anymore. And maybe if it were a not so embarrassing and taboo thing to people, we, as a society, would have earlier diagnoses with this prevalent disease.

He didn’t experience numbness and tingling in his hands and feet like some people reported with the treatments. David lost weight in the beginning but managed to regain some and maintain throughout treatment. It was important to him to have healthy weight and muscle mass going into surgery and treatment. He hasn’t had much of an appetite or craved certain foods in quite a while, but he does make himself eat and try to get as much protein and fruits and veggies as he can manage. He gives a wide berth to the things that cause too much gas. He likes to say gas is his mortal enemy. (I always think… and cancer.) He supplements with protein shakes but they all have that same chalky taste in the end, so it takes some experimenting to find different ones that will suffice.  One of the nutritionists suggested using them in recipes or in coffee and that has worked pretty well.  He says some of the flavors make pretty good coffee creamers. I bought lots of them over these months and I found David liked the Premier Protein and Core Power ones the best. Those have the most protein per serving while tasting ok. He is a good sport and has always ate or drank anything…like Mikey (very dated commercial reference).

David’s blood work was always really good throughout treatment so there was never a treatment delay, and this may have been in part to the fact we found out the systematic therapy wasn’t working as well as we hoped it would. He also only had six rounds of chemo.

David experiences sleeplessness at times and if he gets to sleeping really well, he will most likely be woken up with an urgent need to go to the bathroom. He tries to nap on the couch but finds that frustrating as well because he would prefer to be up doing things.

The cancer in general leaves David extremely tired and if there is one side effect of any of this that I see affecting him the most, I would say it is the fatigue. He had fatigue from the anemia initially and now again since liver surgery. It affects how much he can do on any given day. This seems to bring his sprits down as much as the pain he experiences from the tumor. Not being able to do the things he enjoys and wants to do is hard for him.

“Fun” Fact: We received a bill recently and one chemo treatment was around $2,400. For just ONE treatment.  

Since we got home from the hospital, David has been walking up and down the driveway throughout the day to keep moving and keep potential blood clots at bay. He is eating when he doesn’t feel like it. He is doing breathing exercises when he doesn’t feel like it. He goes to doctor visits when he absolutely doesn’t feel like it. He stays on top of his meds so the pain doesn’t get too unbearable while worrying he will become dependent on them. He gets up and puts one foot in front of the other every day. He showers and has to rest a while. We go to an appointment, and he is exhausted. I can tell he is feeling blue. Deep, royal blue not light baby blue. He is very tired. So tired all the time. He seems even more sad the past few days. On the way to an appointment, he may be full of conversation, then on the way home, there may not be much he wants to say. The emotional side of sharing someone you love with cancer is wrenching. Cancer doesn’t stop. It causes physical pain and emotional distress for everyone close to it. It changes personalities and moods. It changes one’s appearance and strength and wears down even the strongest willed person. Various friends and family ask me daily how David is doing. This is just a glimpse. That is what I see. I ask him ten times a day…Pain? Feel bad? How bad? What does it feel like? What can I do? What do you need? I hold his hand. I hold his head. I hold him. I would hold his pain if I could. One hundred times again and again. He is brave and strong, and I could never do this. Be what he is. Go through what he is going through.  

People ask how I am doing. It is the same honest response every time. “Tired”.

Tired of him feeling pain. Tired of him not feeling like doing all the things he loved doing. Tired of seeing him beat himself up because he thinks he should be stronger. Tired of worrying how long we have. Tired of worrying about doctor visits and opinions and wondering if we are doing the right things. Tired of worrying about how much cancer costs and having front desk people say “Are you aware of your bill?” Tired having to hold back from saying “Of course we know. Send ME the bill. Call ME, but don’t you dare say another word to him as he is dragging himself in for another one of these appointments.” Tired of missing him and he is right beside me trying as hard as he can to be brave and to be a fighter against an unpredictable, malicious opponent. Tired of being so determined to start the day with a positive attitude then failing before I get my socks on. Tired of catching momentary glimpses of his magnetic, funny personality just to have it stolen away again by pain that never truly goes away or brain fog caused by the chemo he had six weeks ago. Tired of missing his laugh and corny jokes and the way his eyes get those crow feet wrinkles in the corners when he smiles so genuinely that it just makes me feel like a silly teenager again. Tired of knowing what it feels like to be brought to my knees in helplessness when he thinks no one can hear him vocalize the pain. Tired of the tears that come at random and inopportune times throughout the day that I try so desperately to stop. Tired of having a good day only to have a sudden realization pop into my head telling me we can’t make long term plans anymore. Tired of battling these thoughts. Tired of knowing none of this is helpful or the right thing. Tired of knowing this is when I need to make a gratitude list. To be thankful. To seek sunshine instead of rain. To do my best to live normally. Consider more productive things. Tired of not knowing how to be successful at that. Tired of feeling so much anger and envy and sense of loss even while we are still right here in this fight. Tomorrow is another opportunity to do better, but right now…I am tired.

February 13, 2023

David saw Dr. N today for his post-op follow-up appointment. Dr. N said the incision looked good and was healing nicely. He told David it would be healed up just in time for bikini season. He advised keeping it out of the sun for about a year due to hyperpigmentation. David’s pain from the surgery has decreased significantly. He still experiences pain from the rectal tumor.

February 8 & 9, 2024

On 2/8 we saw Dr. B the Med Onc. We discussed the best time to begin the radiation/chemo treatments. Because chemo can stop the healing process, it was decided by Dr. B and Dr. N, that radiation and oral chemo should wait until 2/19 to give David’s liver a bit more healing time. David’s hemoglobin has come up a little since the hospital (8.3). Iron rich foods should help some so we are trying that.

Today, 2/9, David went to radiology (Dr. Wa) to get re-marked and targeted. Appointments were made and we will start oral chemo and radiation on 2/19. David will have 30 treatments every day (Monday-Friday) for 6 weeks and take oral chemo on the days he goes to radiation. The goal is to shrink the rectal tumor (hopefully into non existence) lessening the symptoms (bleeding and pain and general discomfort) that he has felt for one year come March. We will be able to use the first prescription of oral meds that he got in September when we first thought we would do radiation and before we knew about the mets. At least this saves us time and $$ right now.

February 7, 2024

David said he felt pretty ok today. He slept most of the night. He had some initial trouble getting on and off the couch this morning but he figured it out. Remembering he can’t bend down to pet one of the cats or grab something from the floor is aggravating. Remembering when to take which med to stay ahead of the pain is exhausting us both. He handled the late night meds last night and I got up at 3 this morning to give him the next dose. We both said it reminded us of taking turns getting up with Sarah-Lauren when she was a baby. He walked to the mailbox a few times today and did his spirometer exercises. He is drinking lots of water and eating a bit but he doesn’t have a huge appetite. He came in breathless after walking one time time, and I reminded him he wasn’t doing a couch to 5k event. He likes when I remind him of things. 🙂

This is a large hospital in the middle of downtown Atlanta. It is the oldest hospital in Atlanta. I took some pictures when I walked down to grab dinner one night. Older parts of the hospital are still there but cradled by newer additions so it is hard to see the true size of the campus when you are in the middle of it all. Lots of glass and lots of light right in the heart of Peachtree Road, the newest Marcus Building reminds me of an airport. This is the place where I waited during surgery. During the day, these areas are full of people walking to and from and waiting for news on loved ones. Then as people leave for the day or make their way to other parts of the hospital, it transforms into this quiet, peaceful and almost reflective area at night. David was excited to see there was a crane outside of his window. It wasn’t working until Monday… of course the day we were leaving. He is like a kid when it comes to heavy construction equipment.

Day 3 A.S.

February 5, 2024

Right off, very early this morning, we started hearing chatter that we might get to leave. How is it that everyone in the hospital knows before the patient? Even the housekeeper said she thought we were leaving. Of course from my experience, the housekeepers know everything that goes on in the workplace worth knowing. At any rate, we were almost giddy. I reminded us that we couldn’t get too excited because the let down if we didn’t get to go would be injurious to our pschye. David is feeling ok this morning and had more of an appetite than they brought him to eat. We got the best tech we had all weekend and he was so attentive to David and brought him juice. It was the first time anyone asked if he wanted anything other than water and David was elated. He loves juice almost as much as I love a non-birthday, birthday cake. We walked a good bit and did breathing exercises. Coughing is painful but good and necessary. I asked if he wanted a “bath” and he said maybe later if we didn’t get to leave. I think he is tired of my baths and was ready for a good long, hot shower. We were still so tired, so after breakfast I closed the blinds, toweled the lights, and turned on some soft classical music for sleeping. I am working on the blog while he dozes. It is so peaceful and quiet right now.

It didn’t last long because the very enthusiastic PT duo came by and tested David on his get out of bed abilities and taught him how to put on his socks without bending or twisting. The same can be used for putting on underwear and pants. Then one of Dr. N’s PA’s came around and officially proclaimed this, A Day of Liberty. We had a nice chat and she gave us our instructions of the dos and dont’s of after surgery. David’s phosphorus and magnesium were low so he needs an IV of each before we can escape. This will put us at around 5 pm for leaving so we asked to get his pain meds filled in the pharmacy downstairs and decided we would stay in Atlanta tonight. We just went and walked some more and then I started packing up. I took a couple of bags to the car and came back and David got changed into his baby going home outfit. We set out to walk some more and wait on the slow IV. We saw Dr. McSubstitute in the hall and he gushed over how good David looked. He asked why we had not left and we said we were finishing the last of the happy hour cocktail then hauling ass over elbows out of there. Another one of the PA’s that actually assisted with the surgery came by and asked if he could see the incision. He told us he did the veritcal closure and explained how he did it. We told him everyone that sees it remarks on how beautiful it is. It really is a nice looking and clean surgical incision. He said he felt it was some of his best work and he seemed very proud and thanked us. It was very sweet. Around 4:30, the nurse said I could go and bring the car to the front of the hospital (about a 15-20 minute trek if that sounded like it was a quick little task, it isn’t). I took off with hair flying and the “best tech ever” waved enthusiastically to me as I passed by like I was on the last leg of a marathon. The whole way, David was texting me his progress with getting a wheelchair Uber to the front door. In no time, we were headed up 75 North to the hotel. Traffic was actually light enough that it didn’t take us long. David found it difficult walking to the room after taking the new pain meds but we made it. It just looked like someone with too many impressively organized bags walking a slightly intoxicated person to his room at 5:30 on a Monday afternoon. After two very long and hot, steamy showers (temperature wise because he ain’t about that life right now), we are settling in for the night and looking forward to some sleep. I only had to go back to the car twice to get something I forgot to bring up. Progress is progress.

February 4, 2024

David and I did some more walking around the halls this morning and noticed these 10 ft markers on the the baseboards. We guessed they had something to do with measuring how far someone walked, but I wanted to know for sure so we asked. Yes, they use the markers to know how far a patient is able to travel to mark progress. I always manage to find faces or hearts in ordinary things, so I caught a few of those on our walks. I am told it is a psychosis of sorts called Pareidolia and is nothing to really worry about. The simple definition is a psychological phenomenon in which the human brain perceives familiar patterns or shapes in random or vague stimuli, such as clouds, shadows, or patterns on a wall. It is the tendency of the brain to find meaning in meaningless or ambiguous stimuli. (internet definition I Googled and don’t remember how to cite for reference). I enjoy it whatever it is.

Sarah-Lauren drove to the big city and brought David’s mom to visit. While they visited, I ran over to the hotel to shower and grab a late lunch. While getting out of the shower, I caught something on the tile on the floor. I swear it was David’s face compete with beard.

David had dinner after I got back and we sat and watched some Food Network stuff on TV and got very sleepy and decided to just call it a night. Knowing we wouldn’t get much sleep anyway. I covered the always on lights and we settled in. David was in some pain and not feeling great. That was actually the very detailed explanation he gave me when I asked how he was feeling, “not great”. Around midnight, the tech came in for vitals. David’s temp was 100.4. This brought the nurse in with Tylenol. Vitals were checked again around 2 am and his temp had risen to 100.6. They didn’t want his temp rising to 101 and the order for the Tylenol was every 6 hours. So in came the ice packs. David had to have ice packs under both arms and behind both knees. He was so not happy with this situation and made it quite clear. He rolls with most things without complaint but after days in the hospital with barely enough sleep to keep him functioning this was about the last bit of what he could manage. Nonetheless, he embraced the suck and lay there in his uncomfortableness with me trying to distract him with positivity and chatter which basically made him more irritated. I finally shut up and he tired to doze off. Around 5 am, after rearranging the ice packs several times, the ice had pretty much melted, so I took them off. Nurse noted this little fact when she came in around 6 but they were just water packs by then. His temp had held steady for a few hours around 99.6, so I wasn’t in much trouble.

February 3, 2024

Day 2 A.S. – Evening

We had not slept well the night of surgery, so I went over to the hotel late morning and slept for about an hour while David tried to snooze back at the 581. The silence back at the hotel was so nice. I snuggled down into bed and about 15 mins in, the housekeepers decided to have a vacuuming and yelling down the hall competition. David said he slept a little in between people coming in and out. I could have slept for days but felt guilty even laying down for that long. I have this feeling of missing stuff when I am not there, so I showered and grabbed clean clothes for the night and went back to the hospital. After David had dinner, I went and grabbed some Panera from downstairs and brought it back to the room. We watched a little TV, got handed off to the night nurses, went to bed and chair around 10. We dozed off and one between people coming in and out for vitals and medicines. I feel weird sleeping with people coming in and out and I feel like I shouldn’t be asleep if he isn’t. Not sure if anyone else feels like that or I am just weird. Anyway, I guess sleep over took me for a little while because the next thing I knew, I heard a man’s voice. Not loud but enough to think, we don’t have a male nurse. It was then I heard, “psssttt. pssstttt. psssstttt. hey!” I startled awake to see David staring down at me from the opening in the handrail on the hospital bed with pillow cocked back in mid air. He said “I have to go to pee, now!” Did I mention I had forgot to leave his little urinal thing within reach in case he had to go quickly? So I jumped up, got tangled in the blanket, and slid around the side of the bed like I was sliding into home. He was trying to do the elbow roll thing to sit up that PT taught him while getting tangled in all of the IV and oxygen lines. Because I had blocked out the sun with my towel invention, the room was very dark. He finally got to his feet trying to not drop the O2 monitor while I was helping get the IV stand rolling. That is when I realized the pain pump was still plugged into the wall. I ran back to grab it before we were snatched backwards like in a cartoon and we skidded around the bed to the bathroom. I had to pick up the stand to get it over the thresh hold and thought I was in the clear until he couldn’t get his shorts down because he was holding the O2 monitor and also the IV pole for balance. I yanked down his shorts milliseconds before he made it rain. I closed the door and sat a minute trying to catch my breath. I swear he peed for 7 minutes. His bladder was way full. So I helped him back in bed and while we tried to settle in, it dawned on me. I asked “were you about to smack me with that pillow to wake me up?” He said “Hell yes I was because you didn’t hear me”. It started as a giggle then we nearly passed out from laughing. Him more than I since laughing, coughing or breathing can be excrutiating at this point. We finally settled down when the nurse came in. 5 South 81 is right next to the nurses’ station, so we assumed she was coming to see what the commotion was. She just sort of asked was everything ok and we began to tell her and then like kids at a slumber party, we all three were rolling with laughter.

February 4, 2024

Day 2 A.S. – 6:30 am

Lights in the room won’t go off completely due to some issues with the switch. So, we have been “sleeping” like the sun was on. So last night we got them down to just the over the bed indirect ones. I had a bright idea and tossed towels over them. I didn’t burn the hospital down by doing it, so it was a win win for everyone here I’d say.And oh yeah, David is doing well. Ran a fever this morning and got meds for that. Just got all IVs out and pain pump has been disconnected. Transitioning to oral pain management. We walked the halls for about 20 minutes at 5 this morning and now he is sitting in a chair. O2 has been a little low off and on so he still has the monitor. Dr. McSubstitue was in at 5:45 am and said he looked great. The pain syringe has to be disconnected with a key and the key was connected to something large so someone doesn’t just put it in their pocket and forget (like the old gas station restroom keys attached to a hubcap. I really need one of these as a souvenir.

February 3, 2023

Day 1 After Surgery (A.S.)

If you have ever stayed at a hospital resort with a loved one well you already know how the night went. What kind of Valerian Steel are the hinges on the doors to hospital rooms made of in order for them to be opened so many gigajillions of times per night?  Anywho, we guesstimated that we got around two hours of “sleep” total off and on the whole night. Dr. N’s partner, Dr. McSubstitute came in at 6am and said David looked really good. He looked at his very long hockey stick shaped incision and said it looked good as well. He said David would transition from a clear liquid diet to a just a liquid diet. Mmmm boy! He also said the pain pump would be removed tomorrow. Lawd be with me…I mean him. Please give him strength…I mean me. David has not complained about too much pain and he doesn’t hit the pump too much. He is the strongest person I know . The Foley catheter came out this morning to David’s delight and he has been able to pee without issue. Had he not been able to urinate, then a bladder scan would have been necessary to check for issues which could possibly make a straight catheter necessary if he couldn’t “make water on his own”.   While I ran to the hotel to shower and change clothes, PT came and got David out of bed and into a chair to sit for a while. When I got back, he and I walked down the hall twice and then he sat in the chair for a while more. I asked about a shower, and they said maybe tomorrow but he could put on clothes if he wanted. I gave him a warm bath fit for a “professional working woman” with some Bath and Body Works bath gel we had. So, we had the room and him smelling fresh and floral…I mean like manly, masculine, man scent. All of that wore him out so he has been napping while I sat here getting my thoughts down. The nurse has come in a few times this evening saying they are getting low oxygen calls so they keep coming to check on him. He says he feels ok and is at this moment eating his liquid diet of tomato soup, unsweet tea and milk. He does his spirometer exercises every hour while I cheer him on in a very supportive way and totally not saying things like “just do it and hush”. It is my job to count and his job to suspect me of miscounting and totally not without merit. I have a lot of jobs in the hospital as a matter of fact. Welp, it is nearly time for evening report. Time to go see who the trouble makers are on my way to find something to eat. All is quiet at the moment. Patient is snoozing. Where my nurses at? Dap me up. 5 South 81 out.  

February 2, 2024

After surgery-afternoon/evening

Where did we leave off? Oh yes…me having to pee. So, the recovery nurse called to let me know the room number and what I heard was “5 South 81”. I said can you repeat that please? And sure enough, she said 5 South 81. Clearly confused, I asked “and that is the room number?”. She said yes. So, I said OK and went to the car for his well-organized hospital bag before heading over to Area 51 to find his 5 South 81 hanger location. I have always loved hospital gift shops for some reason, so I ducked into one of the two they have here. Some of them have really cute things. I found a cute little bear and headed to find a sign that could direct me. It was at this time that I thought “now was it 3 South or 5 South” and where is South because no hospital directory I was looking at references that sort of Ponce De Leon navigation. The signs just said “levels” There are also tons of buildings, and some are connected, and they are labeled with numbers. So, I stopped at information and asked if she knew. She called someone who said he was still showing in surgery, so she suggested I call the number back that called me. I did and the nurse that answered and laughed at my fumble and told me yes it was 5 South 81. She said that means the 5^th level, so I asked how to get there, and she said to ask the info person nearest to where I was. I go back to “Gladys” and tell her what they said. She told me it meant 5^th Floor Room 581 but really it is 81. By this time, I am thoroughly confused but at least I was near the bank of elevators that I needed to use. There are so many elevators here. I did find out that “south” is actually Building 2. I get off the elevator and the signs were not clear on which way to go. I walked to the first nurses’ station and asked for directional assistance and a nurse indicated behind her and says “back on that other hall”. I go back to the “other hall” and was told it was down a side corridor. This was getting weird. This nurse actually took me there and it opened up into a whole other maze of hallways. It had been about an hour since the recovery nurse said they were moving him. Found the room finally and opened the door and surprise! He wasn’t in the room yet. So, I waited and waited and like the first day of class, wondered was I in the right place. I noticed Dr. N’s name on the board so that was a pretty good possibility.  Realizing in my haste, I neglected to take some time to be grateful the day’s events, I used the time as I waited to just enumerate some gratitude. They finally rolled him in, and he was alert and talking and looked really good. They transferred him to the new bed and the nurses and techs set to work being nursey. We finally all got settled, and after a few hours, it was shift change, so the apple cart got tossed around like it does every day at 7 and 7 all across the medical nation, I guess. I love to hear them giving report and then jabbering on about this patient or that and who will give you trouble and who is pretty quiet. David was in some pain but nothing that wasn’t managed by pressing the pump which he could do every 8 minutes. It is connected to a respiratory monitor in his nose so when his breathing is slower, he doesn’t get as much so as not to drop his heart rate any further.  Hospital stuff is just interesting. Much like airports, I am fascinated by the inner operations of huge places like that. David caught a few zzzs and I was able to run out to the car to grab my night bag and then down to the Panera here in the hospital to grab a sandwich. We got situated after that and discovered the lights would not totally turn off and after consulting with the nurse who also flipped all of the switches in every combination, was told “something must be wrong with them”.  Nonetheless, we settled in to sleep with the sun on.

Finally had to get up before my water broke. Packed up my stuff. Got my well organized bag together and headed to the restroom. Nurse called. She said in this order and I quote…

Hi. This is Nurse D and I am taking care of David. He told me right away how to say your name, so that I would say it the right way. He said don’t make it more complicated than it is. It is two letters. Did I get it right?

He is a sweetheart

His vitals are great

He had a liquid diet and pudding and ate 100% of it

He has had Dilaudid twice

He is doing good with pain.

He has a Foley catheter and doing ok

He is alert and talking.

We have a room and are moving him very soon.

How many years have passed since 3:30 this morning and is it time for dinner yet?

Why does this hospital look like an airport?

What are the people in scrubs sitting around talking about?

What day is it?

If I get up to go to the restroom now, is that when they will call from recovery? How about now? What about now?

When people had surgery “in my day”, you had to call someone on the phone to see how it went. Now we have instant information to anyone all over the world.

What is this lady listening to on her phone while she is knitting on a full ass afghan?

Can I make hospital bag packing and organizing a full-time job?

If I go eat right now, is that when they will call from recovery? How about now.

A-Hospital time hits different  B-does anyone say “hits different” anymore and #3 is there anyone young enough on FB nowadays that would even know the answer to that?

How does the magic paper on these go go Gadget visitor badges know when to expire?

They have forgotten that I am out here.

Is it dap me up or dab me up? I have heard both today from grown men and is there anyone young enough on FB nowadays that would even know the answer to that? I should have used that with Dr. N when he came out. Didn’t want to look uncool not knowing which one it was.

Seriously, what day is it?

I’m going to pee.

Post-Op Recovery-12:00 pm

Nurse Brittany called to say David was doing ok and relaxing. She said he told her he just “felt a little sore”. I advised her of his self proclaimed fantastic humor. She said mmm-hmmm. She said she requested a room and would let me know once she had a room number. Also, she mentioned if it was taking longer than usual, she would just call me with updates.

Post op-11:24

February 2, 2024

Surgery-10:30

Dr. N came out and sat down next to me. I am sitting right at the door where the surgeons leave. My first thought when I saw him out of the corner of my eye was it is too early. It wasn’t. He is just good. David was still getting finished up but he wanted to come out and let me know. Just like they do at the real hospital on Grey’s Anatomy. (Oooh, actually, he could be our Mc surgeon. Now I need to think of his Grey’s name. Ooooh again, all of the doctors need Mc names!!! Why haven’t I thought of this) He said “I have pictures for you, turn on your AirDrop”. I know how to do stuff but somethings I have to think about. I totally went blank and was like isn’t it on already? He says “nooo you have to do it”. I said David usually does that for me when I don’t remember things. I gave him my phone and said you do it. So he did. And that is what I look for in a surgeon. One that will come out to tell me what is what and sit and talk to me like I am an old friend while taking my phone and turning on my AirDrop to share bloody pictures from inside my husband with me. So he goes over the interesting but grizzly photos and says that he was able to remove both tumors and showed them to me. (In pictures. he didn’t have them in his pocket or anything).

During surgery, David lost 900 ml of blood during the repair to the hepatic vein near to where the liver segment was removed. He was given a transfusion of two units of blood during surgery. Dr. N explained that blood loss in this area is expected as it is a blood filled area. There are 11 sutures in the right hepatic vein and the right inferior hepatic vein inside his liver. It was a successful surgery for removing the two masses. Both masses and the liver segment, were sent to pathology for testing. An intra-operative ultrasound was performed and no other issues were visible at the time. David’s gall bladder was also removed as is the case in surgeries like this.

Surgery Day-8:56 am

I got a text saying, “patient is doing well”. Surgery began around 8:07. It is expected to last around 3 hours. His gallbladder will be removed because it sits in the way of the liver plus, he had some stones in there, so we will be less one gallbladder and hopefully rooting out those two little tenacious terrors soon.  

February 2, 2024

Surgery Day Morning

We slept pretty well considering. We were up before the chickens around 3:30 am to shower and head down to the hospital. When I got out of the shower, he was sitting on the little couch dressed. I said “going someplace” since he had not showered yet. And he asked me ever so sweetly, did you bring my pain meds from the car? I just looked at him. HOWWWWWW? How with my perfectly planned system? He laughed and said he figured. So, he went down to the car then jumped in the shower. I ate a banana real quick while he was in the shower, so he didn’t feel bad about not being able to eat. Something about choking down a 4am banana… but I have not pinpointed that emotion yet. (I know how that sounds. I have a juvenile sense of humor)  We got to the hospital before 5:30 and they took him right back. I was able to go with him. Remembering back to Fayette where they didn’t let me go back, I was thrilled to get to go. It means everything to get to be with your person for as long as possible. David had a great pre-op nurse and we chatted and laughed while she busied around doing her nursey thangs. Dr. N popped in with a bright orange camo hoodie over his scrubs. He is an avid deer hunter and on the first visit, swore David was the twin to his taxidermist. We are not hunting people and he was so disappointed because he said the beard just screams hunter. I have ragged him about those doe eyed innocent creatures ever since. He did his surgeoney thing and headed out to prepare for miraculous work. David said that is what he looks for in a surgeon, extreme confidence bordering on ego disorder with a fine fashion sense. His nurse said they like Dr. N because he is such a fun person. He does tell you like it is but in a way that you don’t feel hopeless. Someone came to take the visitors back to the waiting area and she popped her head in and asked if there were any visitors? David and I looked at each other and said nope. Haven’t see any. I said “I am his emotional support organizer.” She dropped her head to her chest, shook it and said “Lord have mercy. Bring yourself on out here” She left me to the kissy kissy part, and I wasn’t going to do it, but I got a bit teary. I wanted to say something profound. Say just the right thing to comfort him. But you know that sense of panic that starts rising from way down in your stomach, and the sting that you start to feel in your eyes that you can’t stop even when doing that look up to the ceiling trick. Anyway, after a round of I love you I love you more morer morest, I went out and was escorted back to the waiting room. She saw the tears and said “we are going to take care of him”. I just nodded. I felt so foolish since no one else around seemed to be visibly emotional, so I ducked into a restroom to take a breath.

February 1, 2024

We are back in Atlanta today for pre-op. I spent last night packing bags and unpacking bags not knowing what to bring. I used different bags for his things he would need in the hospital room. Things I would need to stay with me all of the time. Things that would stay at the hotel room. Things that will stay in the car. And still ended up having to rearrange things a few times as if by having everything organized and perfectly arranged would somehow make all of this better. We got through Admissions but not before the admission guy asked David’s thoughts on the Falcons. GEESHH! We were released around 5:15 pm. And anyone who knows the ATL knows that is the ideal time to take a relaxing meander over to the Interstate 75 parking lot. So, we spent a little time exploring the hospital and looking at the interesting displays of 100+ years of Piedmont Atlanta memorabilia. Fun fact: It started in 1905 as a sanatorium with 10 beds. We headed up to the hotel and got checked in. David wasn’t very hungry and decided to just grab some soup for dinner. We picked it up and ate in the room. David met a guy in the parking lot at the hotel who commented on his beard. He also had a sizable beard although not quite as lavish as David’s mostly sodium and king of spices mane. They chatted about beard grooming and other things beardy while I busied around with my well-organized compartment storage system feeling quite accomplished and proud of myself. Then when I got all the way up to the 6^th floor, I remembered something he needed that was in his well-organized hospital bag that was to stay in the car until hospital time fun times. So down I went through the maze of linemen and construction guys hanging out downstairs until bedtime. I got back to the room and started to unpack the dinner when David said, “where are my shorts”. So, shoes back on, I headed to the elevator and down to the expertly organized luggage system. Back to the room for dinner which was now cold at this point. Then we noticed the room did not have a microwave. It was supposed to but ok moving on. Weren’t going downstairs to heat it up so we had a good ‘ol southern cold plate. My 653 mile trek to the parking lot aside, we had a nice little evening not really able to focus on whatever was on. I think it was something on Food Network like 1000 episodes of Triple D or beat someone at cooking but it was hard to focus when I am just feeling those pre surgery emotions. The unknown, unpredictable situations are just the worst. Just trying to keep good vibes and thoughts flowing. Throwing the bed covers back, it was at this time that I realized my contact case was…. down in the well organized tomorrow’s hospital bag patiently waiting for its morning trip to the big city. By now, the working guys are giving me head nods like this poor pathetic moron obviously cannot afford luggage.  Back inside, contact out, ready for nite nite. I lay there thinking of starting a new business organizing people’s trip luggage and I think there is a market for it.

January 30, 2024

Today, David saw Dr. Wa to discuss radiation following the liver resection surgery. Personable and enthusiastic as ever, Dr. Wa agreed that we are on the right path. He said once chemotherapy becomes less effective it is a good time to hit the cancer with a new modality. The rationale being it isn’t ready for what is coming. He said we will proceed with 30 treatments (Monday-Friday for 6 weeks). The hope is that this plan will essentially kill the rectal tumor getting a “complete response” and thus making colon surgery unnecessary. David has apprehension about that prospect only because he has wanted this tumor out for so long. And it is easy for us to think why not just get it out? And apparently that is a good plan when there is no mets (metastasis) and a person is older when diagnosed. In many cases, surgery isn’t ideal for a younger person who could be facing an ostomy and other less than ideal things. Regardless, David acknowledges that this is how he feels today. It is difficult for us to envision a day where they may say “no evidence of cancer” because that hasn’t been our experience through all of this so far. But, just as they see less than ideal outcomes, they see positive results and there are protocols in place because they have worked. There are risks and not so nice side effects of course. Those are easy to Google and easy to become concerned about. We have to look at the positives here…those best outcomes that we know are possible.

Dr. Wa decided he wanted to go ahead have David marked up for radiation and asked us to go have lunch and come back by the office. David got suited up in his Pooh Bear costume and received the sharpie marks where the radiation will be targeted in his colon. To our surprise, Dr. Wa said he is ready to start radiation as soon as a week following the liver surgery as long as David feels up riding there and getting on the table. Of course we are grateful for the opportunity to get started as soon as possible.  

We spent the rest of the afternoon in Atlanta trying to peep out a hotel for us to stay on Thursday night and for me to go back and forth to shower and have a change of clothes. Not a lot of options near there that aren’t sketchy areas and the traffic was absolutely horrible downtown. David and I have both said that sometimes, we think we could live in the big city until we visit on days like today and then remember…Nope. Not for us.  

January 27, 2024

CT-Lungs

David and I went for his lung CT early this morning. We were thankful that Dr. B’s scheduler was able to get him in so quickly. It was a quick scan without contrast just to check to see if our damnable lurker had creeped its way in there. The lungs are usually the second organ where colon cancer spreads. We are so exhausted from the relentless push and pull from scanxiety, anxiety, and all the other xieties that invade one’s brain from the first moment you hear the word cancer.    

We received the radiologist’s report about 30 minutes after we left the hospital. Lungs are clear and surgery is on for 2/2/24.

January 26, 2024

We saw Dr. B today. He confirmed what we already read from the scans. The last two rounds of chemo had less effect than we had hoped. Dr. B explained that sometimes refractory disease occurs during chemotherapy when cancer stops responding to treatment. He said this seems to be the case with many people with this type of cancer that are diagnosed at younger ages that is the norm. Older patients still tend to respond well to this treatment. There is an increasing issue that the medical community is still trying to understand as far as the number of younger people with rectal cancer. It does open the doors to having more genetic testing done but they are finding it does not appear to be genetic. That leaves some environmental factors that are affecting these outcomes. Unfortunately, we are experiencing this firsthand. What does this mean for David?  Well… this knocks out being able to treat the cancer systematically in this way which we really need to be able to do for metastasis. Dr. B said he would like to proceed with the liver resection surgery to remove the two lesions. We are not guaranteed that more “spots” won’t pop up. He said he wanted to schedule a CT scan for David’s lungs prior to surgery just to ensure that they were clear.  He said he did not expect for there to be anything there, but it was best to check before proceeding with such an invasive surgery only to find out later there was more spread. They were able to get a CT appointment for Saturday (tomorrow). We did not feel good leaving the office today. A million things go through your head when you get results like this…the first one being “what next?”.

January 24, 2024

David had an appointment with Dr. N today at Piedmont Atlanta to discuss the liver scan. He confirmed there was indeed a second lesion as he had previously noted with the scan on December 6. Dr. N is ready to proceed with liver surgery and said he would like to get it scheduled for February 2. He called and discussed his thoughts with Dr. B and both agreed to proceed with that plan. Both lesions are in the same area of the liver. He is confident of getting the R0 resection with both areas but will not know how much liver he will need to remove until he is actually in surgery. Despite being extremely anxious about a surgery of this magnitude, David and I both are ready to move forward. Dr. N said recovery would be painful and would take 4-6 weeks. So now we wait for it to be scheduled hoping nothing else derails the train.

January 23, 2024

Rectal MRI

David had the second MRI today. This one lasted around an hour. Results will tell us what effects the most recent rounds of chemo may have had on the tumor. He said he got to wear two gowns for this one. One covered the front end and one covered the back end so he wasn’t reprising his role of Winnie the Pooh today.

January 20, 2024

MRI-Liver

About twenty years ago, my first experience with a CT machine was at a trauma center after a motorcycle wreck. Several broken ribs, a collarbone broken lengthways, and a significant amount of morphine later, the only thing I remember is that I sat up too quickly and had a really close-up in-person meeting with the nearest trash can. Thankfully everything is blurry because of all those other reasons and nothing they could find in my head and neck area. Beyond a few classic x-rays, that’s been the extent of my experience with medical imaging. Until now…

For anyone keeping count, I’m currently at 1 PET, 2 CT, and 4 MRI scans. Today was the fourth, next week will add a fifth. I’m grateful for the opportunity to have each and every one of them, the information they’ve provided my doctors and surgeons, and the results that the combination of all those things have provided me. That said, each and every one has two distinct sides. One side is wanting to know exactly what they’ll say and knowing exactly where and how things are. The other side is absolutely positively not wanting to know what they’ll say and living in blissful ignorance. Each and every time, I end up on the wanting to know side and even more wanting to know what we’ll be doing because of the information we’ve obtained. As I said in a comment not long ago, I want to know what the next step is and no matter what, I’m ready to do that thing (at least at that moment). I’ve found steps can be forward, seemingly backward, or sometimes sideways or something like that. But out of the gate, I’m usually ready to go. Later, as a date approaches, I can get a little hesitant, but I push forward through those moments the best I can. These next two opportunities (today and Tuesday) will be the same way, I’m sure.

Here’s a little history of my MRIs. MRI ONE was by far the worst. I hadn’t really looked into them and didn’t really know what to expect. I figured from what I had heard I’d spend some time in a tube, there’d be some sounds, and then I’d be done. I tend to feel more comfortable in close spaces (sorta reverse claustrophobia) so I had no concerns about that. Well… yeah… turns out there was more to it than that. I got no ear plugs or headphones. Nobody explained anything including the panic squeeze thing (I figured that out myself). I wasn’t ready for the intensity of the noise, but most disturbing was the randomness of the tones and sequence. I was given guidance on each section’s length (5, 10, 10 min or so) but I lost count of the total, and I was in the machine for well over an hour. When I left I never wanted to do that like that ever again. Luckily, as I said, this one was the worst. Every single one since has been way better than this. I spent some time letting DeeGee and Sarah-Lauren hear what it was like from videos on YouTube.

MRI TWO was lovely. It was in a similar environment as my PET scan with ceiling murals, windows, and natural light. The technician was super friendly, explained everything, put me at ease, and even gave me tips for getting a better scan. I got some ear plugs and headphones and even got to pick my local NPR station to listen to. The noises were still there and significant (they always seem to be for me) but they were all tolerable. This one was less than an hour, but to be fair I think there was a little less area to scan than the first one. When I left that one, I was happy and basically just blathered on about how much better it was for awhile.

MRI THREE was just barely below MRI two in every area but time. This time I got to pick Christmas music but it was kinda low volume so the noise kept me from really keeping up with the songs. Comfort, headphones, etc. were great. The issue with this MRI was that I had two areas to be scanned scheduled back to back for this one session. Long (really long) story short, I went in late morning and came out 2 hours and 45 minutes later in the afternoon having no idea what time it was. Everything was fine except for the fact that through the office visit and pre-op visit afterwards I was zoned out and never was completely sure what time of day it was. If at all possible, I will never schedule a back to back MRI of those two areas again because it took way way way too long.

Which brings us to MRI FOUR, a single area scan early this morning. If you’ve made it this far, I’ll give it away and say that this one has moved to the top of my Best MRI So Far List. Everything was explained and comfortable and I got to pick my own genre of music, and this time I was ready. “EDM,” I said confidently, then noticed a kind of unknowing pause from the nurse helping me with everything. So I went with “Techno? EDM/Techno?,” I said hopefully. I got an “ok” response so I felt like maybe it would at least be close and it was. Definitely more techno but that worked (next time I may bring an index card with deadmau5 and whatnot written on it). It was amazing. For the most part it did its best to blend with the random magnetic/electronic clangs of the machine, but one of the great parts were the instructions that break in and tell the patient to “Breathe in… breathe out…” then “Breathe in… and hold it,.” And “Now resume breathing.” randomly dispersed throughout and almost qualified it as a track. I literally had to remind myself not to move to the beats. I was so thrilled. A few lights, lasers, a fog machine, and we’d be done. 🙂 As awesome as this was though, what put this one over the top was the slightest little breeze that constantly blew from the end past my head and down toward my feet. Any stronger and it might have been a little irritating or chilly, but it was just right. I hadn’t noticed how stuffy it could get inside there without something like that. It was like the slightest whisper of fresh cool air that reassured me and kept me really comfortable. Obviously it was built into the machine, (Ok, I stretched my eyes as far back as possible and finally saw the two little vents I think, it does get a little boring in there.) but take from that what you will spiritually about that relief as well.

Instead of adding it to each one (because I forgot), I’ll put a few more things here at the end. There’s been a little bit of prep instructions for me to do before each kind of scan (PET, CT, MRI) and I’ve always tried to follow each one as closely as as possible and had no problems. Most are easy for me like not eating a few hours before and staying hydrated. Others are a little more involved with monitoring my blood sugar levels, drinking different types of contrast materials at specific times, and let’s go with what we’ll call more colon related preparations but nothing like a colonoscopy. During all the scans I’ve had IV contrasts without any issues. I think they can affect some people but at most I’ve felt a little warm or cold sensation in my ears for a few seconds. Of course each and every person that starts the IV gets my standard “If you start it in my hand I may pass out.” warning. More on that in one of our first posts. But overall they’ve all gone well.

I plan to write more on this later, but for now I just want good clear accurate results from this scan. If things have gotten smaller or better in some way that’d be great. If not, I still want to know exactly what’s there and what we’re gonna do about it. If you pray or think good thoughts, then please do that as you see fit. As for me, I’d like to have the results that I’m meant to have and wherever that leads. Nothing else specifically, because I’m sure I don’t know everything about what I need and when.

Current Interests: Not temperatures below 20 (actually 50) vs cold sensitive side effects, still watching Mannix cars change, NFL playoffs, watching the Cowboys choke and lose, not having to watch the Falcons choke or lose, watching the Lions win, watching “Dem Boyz” choke and lose.

The Care Bears and I go way back to the 1980s but I never quite mastered both parts of the sharing thing that Share Bear tried to teach. I mean, I shared my toys when I was little, I share my money with people in need, I ALWAYS share any “too brown” french fries with David, but I don’t share personal stuff and thoughts with people. David, though, David knows all of my thoughts. David knows stuff he doesn’t ask to know. Like every detail of my conversation with someone at work or that the third toe on my left foot is mysteriously hurting for the 5th day in a row. He takes it in stride. He is the most patient person on this planet. Maybe even the first six planets…. but I digress. So why does it seem some people share more easily than others? Share Bear taught us not just to share our possessions but to also share laughs, joy, advice, and happiness. Does that include pain and sorrow? Does it help for others to know about these feelings? I think maybe it does. As David and I are making our way through this horrible, no good, very bad time in our lives, we are learning that maybe it is ok to let others in a little. Maybe it will offer us (or someone else) some kind of therapy. Last night we did a thing and shared with the “public” about David’s cancer. Sitting here reading through messages and comments in the aftermath made me think that maybe we did an ok thing. Thank you for the encouragement.

SHARING IS FINE (-d)

When we first considered making something to keep people updated, I honestly was just thinking of it being an easier way to put information out when we could in one form that others could access when they wanted to or not if they didn’t. I never considered that doing this could help anyone. Thankfully, after actually putting it out there, I was reminded that I don’t always see everything from every side and that not only could this help people who might tell us it’s helpful, but more importantly it could help someone that I never know reads it. It’s not easy for me to share things and most times it’s even harder for me to make myself sit down and focus long enough to get started writing something much less continue and finish it up later. So thank you to everyone who’s shown support for this and to anyone whose support we might never even know.

Back to the part about it being hard for me to share stuff. I always try to remember (not always successfully) something I heard at Mass years ago. The topic was helping others or something like that, but one of the points that struck me most was that helping others wasn’t always about you helping another person. This part of it focused on the ability to help others by putting yourself out there and allowing others to help you. By providing the opportunity for others to help you then you were helping them. Part of this also included how sometimes it was easier for us to throw ourselves into helping others and keep any difficulties we might have to ourselves because it was harder to be vulnerable and put out there that we needed help. I remember it striking home pretty hard at the time and to this day still does. I think this includes putting it out there that we’re going through some tough times, too.

So maybe just putting all this out there and allowing others to read it is a part of that. The reason I chose the tongue-in-cheek name I chose for this blog is because no matter what’s happening to me at the time, I could be in the middle of chemo or after surgery or some kind of pain, if you ask me how I’m doing the first thing that pops into my head is some version of “It’s fine. I’m fine. Everything is fine.” Even if it’s obvious that I’m not. If I don’t catch myself it usually comes out as “I’m ok” or some minimized version of “As good as you’d expect.” If I try hard, I can actually communicate that it’s a not so good day or something, but honestly that’s kinda rare. I’ve even had to work really hard on thinking about this when talking to my doctors and nurses and people like that. Sometimes I get confused as to how I feel or what level my pain “really” is or something. Needless to say, it’s really important to be as straight forward as possible about what’s happening with me and how I feel to all of these people. It has been and still is a struggle, but I’m working on it and trying to do better with each visit. I’ve been through plenty of counseling and done quite a bit of work on it, but I’m still kinda envious of people who seem to be able to share their feelings and/or emotions freely. I still struggle with what the “right” answers are to those things. Which, from what I’ve heard, totally misses the point. I suppose practice helps though, and writing all of this certainly seems to be the practice I need. Thankfully throughout writing these pieces I haven’t put much thought into what might be the right way to do it and that’s been really pretty freeing.

[DeeGee] Fun fact: Share Bear’s ice cream soda with two straws belly badge was changed in 2002 due to concerns from Play-Along-Toys (who owned a license to the characters at the time) that sharing drinks can spread harmful bacteria and even viruses. The decision was made after an outbreak of Meningitis in the U.S. the year prior. –CareBears Wiki

I caught a wave tonight that I couldn’t handle, and it took me under.

Since this started, I find myself being angry much of the time. Thinking about unfairness and why David. Why us? Why now? And just plain why?

It isn’t fair. Such a cliché statement but seems to be my go-to negative, unhelpful mantra on my gloomiest days.

I try to pray. I don’t think I ever really knew how. Often it seems silly whispering, and in some cases, shouting words into the air. Asking questions, making promises and pleading with someone or something I cannot see. Talking to someone that isn’t talking back. Faith is a funny thing. I asked David one day, “how do you get faith?” He told me you can have faith in anything. It doesn’t have to always be a religious experience. He says faith could be as simple as trusting we will be ok to get in the car and drive from point a to point b and arrive safely. I should record him saying things. He is very smart. That is an understatement. I feel like recording him is weird like I am giving up and saying I want something to hold on to when you are gone. But really, why wouldn’t we do that anyway? No matter if a person is healthy or if they find out they have cancer. There isn’t time to worry about if it seems silly. But I do.

Tonight, as before, I tripped down a rabbit hole of survival rates and metastatic disease. I don’t know why except that I was looking for information on treatment options. I know there is nothing good down this cold, statistical path. More times than I care to admit, I have fallen into those dark holes of reading too much. Someone that is going through a similar thing with her husband told me early on to only be concerned about the information we have in the moment. She said don’t go looking for more information than you need at this time. I have come to understand how important this advice is. I can’t process what life would look like without my person. I just can’t. I know what the reality is. I know what the studies show. He is more than a statistic. People say live every moment as if it is your last. I don’t know how to do that. I honestly don’t. It is unfathomable. Some days I feel like I can do whatever it takes and sometimes the weight of all of this is too heavy. Many nights I toss and turn and restlessly sleep a couple of hours before my mind is racing with these thoughts of worry and what ifs and should’ves and could’ves.

It really isn’t fair for anyone to go through something like this, and I find myself saying that too often as we encounter set back after set back and full chairs in the infusion room every other week. What is the purpose? I know what religions teach about suffering. It just never seems to make sense to me or maybe, more accurately, there isn’t an acceptable reason to me.

Something I read tonight said living with metastatic cancer is like walking on cracked ice. You can see the cracks. You are just wondering when they will start breaking up and things will start falling apart. I feel like most of my days are like that. I know I am wasting precious time feeling this way and not spending every moment making him the happiest I can. As much as I would like to sit and hold on to him all day every day, it just doesn’t work like that. Life keeps moving. The universe doesn’t wait because some of us are struggling. Cancer is expensive and I have to work. He wouldn’t want me underfoot all day anyway. I am sure he thinks he gets plenty of unsolicited attention as it is. But I miss him when I am at work. I think I have separation anxiety and it makes me wonder how I can actually function with any of this.

I feel weak. I feel sad. I feel ungrateful and bitchy and so damn angry.

<3 (my part -d)

January 5, 2024

New year. Same Cancer. Back at Chemo today. We were not in the mood to do this today. We grumbled all morning. I think sometimes we just want to be angry and sad and irritated and maybe this was one of those days. Nonetheless, we decided to practice some gratitude during the drive in to the office. We made a list and this always helps when we let it. It helped this time too. Our attitude got a little lighter. There were just so many things we rather be doing. (That would be a good list to make also. I am making a note.). David got labs done and we saw Dr. B today. He noted just how impressed he continued to be with David’s blood work through this process. He said it was amazing how well he was tolerating such aggressive treatment. (My pessimistic self asked David after the appointment if he thought that was a good thing or if it could mean the treatment wasn’t effective because his lab work was always unchanged. He said let’s choose to believe it is a positive thing.) Dr. B confirmed that David was scheduled for an MRI on 1/20 and 1/23. He said he was going to go ahead and schedule another chemo treatment for 1/26 just in case the scans showed something they didn’t like. (Again) He explained it was easier to cancel a chemo appointment rather than add one at the last minute. Makes sense to us and we are grateful for this doctor who clearly thinks ahead and plans for different scenarios. There wasn’t much else to discuss this visit as we are just waiting on the next scans to determine our path forward. (Fingers crossed. Mouth held right. Good thoughts and prayers to anyone listening) Dr. B asked David about the upcoming Falcons Saints games and his thoughts on playoffs and after David ranted for a few minutes about how dead inside he still was after the crushing Super Bowl fiasco of 2017 (of which we do not speak), Dr. B probably learned it was best to not open any doors of that nature regarding Pats, or Who Dats. 🙂

When we left, I found a heart on the concrete in our parking spot.

Labs: CEA 8.4

NEW AND YET THE SAME (-d)

Some visits are just a confirmation that you’re doing what you’ve been doing and you’ll keep doing that. This was kinda one of those. Good news on my blood and weight and confirmation on upcoming scans and plans but nothing significantly different. My port worked flawlessly and I was grateful for that throughout. As usual DeeGee brought out every imaginable form of entertainment for me throughout the hours we were there and I think I managed to circle a half dozen words and force myself to go to the bathroom like a pre-schooler a few times.

HOBBIES OF THE MOMENT: Writing this, late Mid-century to later 60s design, Mannix, Technology featured throughout Mannix season one, hourglasses.

December 22, 2023

Another chemo day. We saw the PA for this visit and labs. We really like seeing the PA just as much as Dr. B. He is so patient. He listens and answers every question we have even when he has other patients to see. Really, everyone in the office is good to us. He discussed the labs and the blood work looked really good. We then went to chemo. Neither of us felt very much like participating today. Another 6 hours in the chair. We played UNO and read a little. David felt very tired and both of us just feel done with the whole process.

CLEARLY LESS CLEAR (-d)

By the time I returned for this visit I was a little more clear on the topics we discussed the morning we heard my surgery had been canceled, and PA. C was ready and willing to talk all about it. I had questions. He had answers. It was everything I needed it to be. At the end we came up with the marvelous idea that we didn’t know exactly what direction we would be heading in eventually but that we had a definite plan for how we were going to get there, and that’s exactly what I needed.

HOBBIES OF THE MOMENT: Night Court TV show (old and new), a few 80s TV shows, Star Wars TIE Advanced X1 model, LEGO James Bond car model, The Avengers Season 5, Emma Peel.

December 8, 2023

David had a scheduled appointment to meet with Dr. B to discuss the rectal scan part of the MRI. On the way to the appointment, David received a call from Dr. N saying surgery had been cancelled. He explained the surgical board was concerned about a new uptake (spot on the liver) and would prefer additional treatment options prior to surgery. We went to the appointment with Dr. B and discussed this latest set back. Dr, B said that looking at the scans, the disease was stable but listening to David describe how some of the symptoms are starting to return leads him to think it is progressing. Dr. B’s thinking at the time was to proceed with additional courses of chemo and then have another MRI in order to determine the effects on David’s liver.  He suggested at least two more rounds and starting that day. Dr. B. talked about options ranging from radiation to nuclear treatment. I asked Dr. B how concerned he was about this development. He said he was “moderately concerned”. The CEA tumor marker indicator was down though so we will take that as a small win. We are disappointed and scared and subdued. Cancer sucks and just keeps on sucking.

Normally armed with suitcase full of snacks and beverages and enough to keep three toddlers busy, we went to that 6 hour chemo appointment with nothing to do but sit and try not to feel hopelessly sorry for ourselves while the poison dripped.

Labs: CEA Tumor marker 6.1

RING RING (-d)

Nothing says change of plans like an in-car phone call from your surgeon on the way to your oncologist. Honestly, it’s a little much to comprehend early in the morning riding along a country highway. Simple enough though, no surgery, most likely more chemo, see you in the office after while, thanks and goodbye. Then there’s the sinking in that the second spot along with anything else just upended everything you had mentally prepared for. Immediately after that, there’s some slight relief that for the moment noone will be making a large incision in you which makes you feel a little guilty about feeling good about. Then there’s the flip back to wishing it was going to happen right now anyway just to be done with it. All this bounced around before I could really even process that my treatment had changed again but this time by not actually changing but going back to exactly what I had been doing weeks before. To fully understand this, you’d have to know that over this last bit of time my bleeding had stopped which felt nothing less than miraculous. My chemo symptoms had eased as it was paused for the surgery which meant my lower abdomen was acting just about as normal as it had been in a very long time. However, I was starting to see the slight reemergence of symptoms I had before the chemo and that was causing me some worry and concern. The only thing I knew for sure as the car continued rolling down the road was that none of any of that was going to stay the same over the next few weeks and like it or not I was going to be ok with that. Notes were kinda taken at the oncologist’s office. Topics were mentioned and ideas discussed but I remember not being able to take them all in fully. I remember knowing I was going into chemo again right after that and that I could handle it because I had plenty of practice with it and was again thankful that we were doing something else that day not just being sent home. So I logged what I could in my brain for later and then went about doing what I did for chemo and it all worked out.

December 6, 2023

David had two MRIs at Piedmont Atlanta. He was in the machine for 2 hours and 45 minutes. He said it was very long and very exhausting. This was David’s first rectal MRI scan so that was a treat for him. He said at one point he was in just his t-shirt, his socks and his bright orange NB shoes. No pants and no undies. I couldn’t help but think of him Pooh Bearing through the exam room. We are both still laughing about that.

Once finished with the scans, we went over to Dr. N’s office for a quick pre surgery visit. He pulled up the liver scan briefly and immediately noticed a new area of concern on the liver scan. The radiologist’s report was not back yet so he asked for it to be expedited as surgery was scheduled for the following Monday and it was Wednesday afternoon. Dr. N said he would need to discuss the scans in Friday’s surgical meeting and would let us know something Friday. We were stunned. This was not something we remotely expected, although I do not know why we expect anything at this point after being faced with so many set backs.  We continued on to pre-admission and got set up for surgery the following week. We both had very heavy and uneasy feelings leaving the hospital this time.

Fun Fact: The main magnet in an MRI magnetic field is 140,000 times stronger than the Earth’s magnetic field.

PATIENT PATIENCE (-d)

Almost three hours in scanning machine is a long time, even with Christmas music and as many things to make you as comfortable as possible. It’s a lot of staring at the seams where the pieces of the machine meet, and it’s a lot of trying to make patterns out of sounds that don’t really have any pattern at all. That said, there wasn’t a moment that seemed unnecessary, and I wanted (and want) all the information I can get. Once it was over I was very thankful and ready to review the results. After seeing an obvious second spot on my liver I was slightly less excited, but still confident that I was (and am) in good hands. This is another one of those points where at any point earlier I would have been super excited to be doing something again. Preparing for surgery, getting ready to have something removed, but again as time grows closer it’s very very much less exciting. I got more nervous as time progressed, but then found myself much more reassured by the pre-op nurse who walked us through every step of the process. Not my first time doing this obviously, but there was something about her ability to check every line and double-check every reference that helped. It seemed to take the rest of the day and I don’t even know how long we were there, but at the end I was grateful for every minute of the attention and detail. All in all it was an exhausting day and I was glad it was over.

David had chemo on October 16^th & 30^th  and November 13^th. On the November 13^th chemo appt, the PA told us that he was scheduling additional chemo appointments “just in case” they were needed. If the scans returned something unexpected, we would not have to wait to be scheduled again and go just resume chemo. We weren’t sure what to think as this was the first time anything questionable that may interfere with surgery was mentioned. Dr. N had indicated he was ready to proceed with the liver resection.

Labs: CEA Tumor marker 8.3

STILL NOT GLOWING (-d)

More chemo through October and November. Nothing really significant or eventful than my first port blockage that meant I had to do a lot of various motions that look a lot like the old elementary school gymnasium stretches I did decades ago. If none of those work (they didn’t) eventually you get a shot (Activase) that you have to wait to see if it opens it up. After waiting a while, mine did and it was on with the show. Because I was still losing blood, I also got another unit or so of iron to help with that. It was a longer day than the typical long day in chemo but we seemed to all make it through ok.

Best news was that due to my treatments, sometime early to mid November my bleeding stopped and that helped to slowly return my blood and iron levels back to near normal. This also helped my energy and eating and by far and away my attitude.

HOBBIES OF THE MOMENT: The Price is Right, Freddie Falcon Lego Sculpture

October 11, 2023

David was referred to a surgical oncologist at Piedmont Atlanta. Dr. N and his PA were both very personable and took plenty of time discussing options and answering our questions prior to sending David over for his MRI scan on his liver. Dr. N told us to go to the scan and come back to the office if we would like to discuss the scan. David had the MRI and we went back to the office. David said this MRI experience was much better than the first and he was able to relax with headphones that actually worked. Dr. N pulled up the scan and showed us the spot on the liver. There were a few options but he felt the best approach would be to make a large incision and go inside to “scoop out” the spot on the liver. He said he was confident he could get a zero margin given the size and location of the spot. He said surgery would be scheduled as soon as we notified them of the last date of chemo. The ideal time for a liver resection such as this would be 4 weeks following the last of 4 courses of chemo. We felt David was in very capable hands with Dr. N. We have since heard so many good things about him. The final chemo date is November 13. Surgery is scheduled for December 11, 2023.

Fun fact: Did you know the liver regenerates? No, not like a lizard tail. It compensates for loss. Anytime the blood flow is reduced to a part of the liver, the liver will compensate and get bigger as long as the remaining part is healthy.

A GREAT VISIT (-d)

Another great visit with another great medical team. Could not have been more pleased with the amount of detail and time they spent with me. Most importantly because I hadn’t really looked into everything going on with my liver since the PET scan. Everything was clearly laid out and planned and any follow-up information was great.

October 2, 2023.

David began a 4 course FULFURINOX Chemotherapy. His labs were good and he was cleared to start. We reported to the treatment infusion room at Piedmont Cancer Institute following an appointment with Dr. B. The nurse assigned to David was so nice and explained everything we could expect. We were there for around 6 hours and this would be the expected amount of time every two weeks. FULFURINOX has a recovery week in between treatments. The effects of chemotherapy are cumulative and are expected to worsen with the number of cycles that you receive.

We learned that the Oxaliplatin or “Oxali” has a weird side effect that causes cold dysesthesia or an exacerbated sensitivity to cold to different parts of the body. This isn’t a sensitivity like “oh I feel a little chilly”. This is a sensitivity to cold food, cold drinks, outdoor air, or common things like the floor or counter tops in your house. Some studies suggest you can lessen the degree of this side effect by “icing” while receiving the IV. This involves wearing specialty frozen hand mitts and socks. Chewing ice and/or drinking something cold. David said it was painful during the icing. You have to take breaks so as not to get frost bite but the IV keeps running.

The Irinotecan or “I RAN TO THE CAN” is very much like it sounds. It has a tendency to cause diarrhea so to lessen the effects of this, an anti diarrheal medication is administered about 20 minutes before receiving this IV.

The Leucovorin is not a chemo medication but is given along with these as a kind of antidote to the harmful effects from some cancer medicines that are given in high doses. It acts much the same way in the body as folic acid. Leucovorin is also used along with fluorouracil to treat cancer of the colon.

David also leaves chemo therapy with an infusion pump with the Fluorouracil (5FU) that runs for another 46 hours. This allows chemo to continue in a controlled way. Some people opt to come back in to the office to have it disconnected but the nurses had such faith in us on the first day, they taught us how to disconnect the pump and flush the port with saline and Heparin. There is a whole process which I think I may cover in its own entry later.

NOTHING GLOWS (-d)

I was positive. I was brave. I am ready to fight. Six hours is a long time. I had to pee, and I didn’t want to. It seems silly, but it’s true. Sometimes in the middle of all this some part of me just decides it wants to not cooperate about something simple. Usually it’s in some kind of pre-school way. I don’t want to go to the bathroom. I don’t want to drink or eat. Or I just want to be uncooperative I guess. It’s the oddest thing, and I never really know when it’ll come on. Thankfully it doesn’t last, and I’m able to get myself to be reasonable before something significant happens but that’s how it is sometimes, honestly.

For yet another uncountable time, I am blessed, fortunate, lucky, etc. to be able to tolerate the chemo treatments I have without significant issues with my bloodwork and/or pain, etc. Honestly I go and sit and get connected to enough bags of various fluid that I inevitably lose count. I try to keep time with some of them so it’s not a surprise when they’re changed and sometimes that works. DeeGee brings me everything on earth that I could possibly imagine wanting during this time, and if she’s lucky I’m interested in maybe two or three parts of it. I try to be positive and usually don’t show enough of the pain before and after, but then again I’m also stubborn and unpleasant at times, too. I don’t feel like it’s hard to do, it just feels like something I do. Then I deal with the results for two weeks and do it again. Repeat then repeat again.

September 29, 2023

David had a patient education appointment that provided lots of information and what to expect with chemotherapy. It was a lot of information to absorb and we have a ton of reading to do.

A LOT OF A LOT(-d)

One day you get a port, the next day you get a couple portfolios of several stapled together pages, a lot of forms and tables, a lot of information spoken clearly and kindly, and a little tour of a place you’ll become very familiar with over several visits.

I can’t describe what it’s like to even begin to absorb this information. It starts with just the understanding that it’s happening. Then you catch on to some of the repeated warnings of side effects. Maybe you try to scribble some notes or make some marks on the paper, but eventually you succumb to the fact that it’s a lot, it’s really a lot a lot. If you’re lucky like me you have someone else there to help get some of that information and again if you’re fortunate to cross paths with the right people giving you the information you realize that they’ve been pointing it out to you in what they’re giving you and that you don’t have to remember it right now. So eventually I just took a deep breath and tried to let it all in. Lots of chemicals would be going into my body. Several things would happen, some good, some less good. There were things I could do to maybe lessen the less good ones, other times basically it was just gonna suck (my words). Overall it was the best way to treat everything that had spread along with the part I was concerned with before. Everybody was gentile, kind, and understanding. By this point I was floating more than standing like I had been before. I knew I’d get my feet back under me at some point, but for the moment the only thing I could really do was to float and let myself be guided along.

HOBBIES OF THE MOMENT: old TV game shows

September 28, 2023

David reported to the hospital to undergo the procedure to implant a port in his chest. The procedure went fine and David was ready to go home shortly after lunch.

PORTAL (-d)

In hindsight, albeit unbeknown to me at the time, watching the first DUNE movie about a month or so prior to finding out that I would need something called a port in my blood system may have been one of the worst decisions I’ve ever made. That said, I was reasonably well read up on the procedure and a little bit nervous about how directly this was connected to me. However, not only did I have the same excellent care I’ve had throughout this, somehow I ended up with a team of super cool “hang-loose dude” surgeon and nurse that made it almost surreal. They showed me everything, convinced me now to worry and that I was in excellent hands, and I even remember having this great conversation about something right before I went under for surgery. Moments later I popped back awake and everything was fine. They re-reassured me it was ok, and I was on my way. Looking back it may be the coolest surgical experience I’ve had so far. To be fair, to this day, it does still feel a little weird to say and know that there’s something called a port directly connected to me though.

September 22, 2023

Pet Scan

After work on Thursday, we went up to Atlanta to stay close to the imaging center so we wouldn’t have the stress of getting up so early and then fighting ATL traffic. On Friday, we arrived at the Piedmont Atlanta Imaging Center at 7:45. They called him back around 8:05 and told me I could come and wait in the waiting room where he would be. He was taken into a little room, given radioactive sugar and they came to take him to the scan at 9:05

The news we received this afternoon shook us to our core. The PET Scan revealed a spot on David’s liver. The two oncologiss consulted quickly and agreed to terminate the plan to begin radiation. They do not want to wait on a biopsy and will proceed with the knowledge the cancer has spread to David’s liver. The liver now takes precedence and David was scheduled to receive a chemo port on September 28, 2023 and will begin 4 courses of chemotherapy following the port procedure recovery.

PETS BUT NOT THAT KIND (-d)

The good news about a PET scan is that it’s (in my non-professional opinion) a good way to find cancer in your body. The bad news about a PET scan is that it’s (in my personal emotional opinion) a good way to find cancer in your body. I can honestly say i was at 50/50 on this one by the day of the scan. If anything else was there I wanted to know it and everything about it. However, also I couldn’t honestly imagine finding out that there was more or anything else about where it could be or anything. It is a very odd place to be almost perfectly balanced and tipping either way for quite a few days and hours on and off as the date and time grow closer. In the end, I decided not to give myself the option that there was anything to do but go through with it and accept then deal with whatever results came. If I was honest with myself, at least 50.01% of me wanted to know if there was anything else anywhere else in me and then aggressively go get that the same way I was approaching the cancer I already knew was there.

After the usual getting “gowned-up” for a scan and having my blood sugar checked to be sure it was low enough for an effective scan they brought in the coolest looking metal radioactive labeled box ever. 🙂 Honestly, it was the most impressed I’ve been so far. Just enough age and sturdiness in it to seem as serious as it is and marked with just enough warnings to let you know the same but not over the top. Inside is radioactive sugar designed to be taken up by any cancer cells (especially significant) in my body then help show those cells/areas on the PET scan. Interestingly enough I had no problem with this going into my body. This also begins my disappointment throughout this process that no matter what kind of chemicals I receive, no part of me glows in the dark. Afterwards I get an hour to wait “peacefully” in what I’ll call a too quiet room with a lamp that’s attached to the table (probably for good reason), and just enough low lighting inside the room to let me try to look through the grids in the ceiling at the slightly more well lit areas above. Right before I’m almost close to comfortable that’s the end of my hour wait and it’s into The Machine.

Turns out the PET machine is really just another version of the CT and it happens to be in the most awesome room yet. We’re talking corner window views (not great laying down but still impressive), murals on the ceiling of plants and sunlight and positive things. Clean and bright and full of just plain good energy (ha). As is always the case, I’m guided on how and where to lay and given plenty of things to brace against and make me comfortable. Several passes up and down and in and out later I’m done. I remember it took a little bit longer than I would have liked but was in no way uncomfortable. Nothing like the the freedom of being out of the gowns and into my regular clothes and out the door.

THEN IT ALL CHANGED

There was a spot that showed up on my liver and because of this everything that was planned before was stopped and something entirely different started. Immediately. No ifs, no whats, no buts, nothing but a new direction. Right. Now.

It certainly wasn’t what I wanted to hear, but it’s what I heard. It’s what I responded to, and as best as I can remember, I was on board with it just as quickly as I had been with the previous plan. It was important for me to be doing something, and if this was the new “doing something” course that had been chosen, it’s the one that we’d be doing.

September 20, 2023

David went to Dr. Wa today for a diagnostic test that targets the area for radiation therapy. Radiation is set to begin on September 27. He will have a total of 25 treatments once per day Monday-Friday for five weeks. Along with the radiation, he will take oral chemotherapy Xelota (Capecitabine) twice per day (total of 8 pills) on the days he goes to radiation. He will have Saturdays and Sundays off. (Dr. B explained in our last appointment that the side effects from oral chemo are cumulative and so by having these days off each week, David may not experience many of the side effects of the drug,) David was “tattooed” with a sharpie that marks the spot that the radiation will need to hit. He was told he would get a better tattoo after the first treatment. Radiation therapy is highly targeted to more accurately control the cancer (tumor) where it is in the body. The targeted therapy is designed to try to save other organs and tissue from being damaged by treatment. Side effects from radiation therapy can take months or years to develop.

MARKED UP (-d)

Having looked up a lot of stuff on radiation treatment, I felt pretty prepared for this appointment. The only thing I was less prepared for were the feelings that this was all really about to happen. Again, as with any time I can remember in this entire process, the people who helped me from the first person I met at reception, through all they procedures, to the last person to see me walk out the door could not have been more kind and helpful. It really is amazing to feel. Always ready to explain and answer any question that I will myself to ask. Slowly, not rushed, and reassuredly throughout step by step we got it all done. Listening to my radiologist Dr. Wa discuss things with the staff in a kind and patient way as he explained not only to me but to them the how and why of what he was doing was the best part. The experience itself was as comfortable as being aligned internally and externally with lasers and CT images can be imagined to be (it’s really not too bad). I remember being really worried about washing off or losing these marks even though they were significant, but them putting a little extra tape on each made me feel better. After it was all over, I was dressed and ready to be on my way. Still feeling a little bit anxious that I was another step closer to actually being irradiated, but also a little excited that this could make a significant difference in not just my long term treatment but the short term effects as well.

September 12, 2023

Dr. Wa’s office scheduled an appointment for a diagnostic appointment on 9/20/23. This appointment will get David ready to start radiation therapy. We also got work from CVS Specialty pharmacy that the insurance approved the chemo drug and we would need to set up a shipment to receive the medicine.

ANTICIPATION? (-d)

One thing I’ve learned is that my excitement for procedures, treatments, or things like that definitely wanes the closer they get to the actual time of doing them. I remember still being really excited about this appointment being made and the idea of making more progress.

September 6, 2023

David saw the medical oncologist (Dr. B) and his PA-C (C). We discussed history with C before seeing the doctor. Dr. B explained the process and confirmed any of the same things we had heard during previous visits with the other doctors. He explained TNT (Total neoadjuvant therapy) and he said he suggested starting with the chemo/radiation combo. He prescribed Xeloda (Capecitabine) pills. David will take these chemo pills each day that he has radiation. He explained that radiation would be Monday-Friday for 5-6 weeks (no weekends or holidays) so he would not need to take the pills on days he did not go for radiation treatment. Chemo drugs act as radiosensitizers and make cancer cells more sensitive to radiation. The oral chemo basically makes the radiation work better. The drawback to doing both at the same time means the side effects are worse. Dr. B told us that depending on the PET scan results, David may need a full course of chemo following the radiation treatments. Once radiation starts, David would come to his office one day per week to check blood and so they can manage any side effects. He stated he did not expect for David to experience too many of the side effects since the effects from this type of drug are cumulative and David would not be taking the pills every day. We stopped by the lab on the way out for more blood work.

CEA Tumor marker 6.8

INFORMATION BOUND (-d)

By this time not only do DeeGee and I have our individual handwritten notebooks of notes from each visit that we can compare and refresh later, but now we’ve assembled an actual 3 ring binder of reports, test results, blood work, etc. for easier access if and when we do have questions. It feels nice just to have this in your hand even if I never open it and even better when I can open it and find out the correct wording from something a month or so prior. With all this we are “ready” for our first visit with oncology. Again, no wooden paneled office from TV. No reports or folders slid back and forth across some big wood desk. Just us and a couple of people that know a lot about cancer and blood and treatment hanging out in a treatment room with a networked PC and some handouts, printouts, and a branded white portfolio. After my experience, I wouldn’t have had it any other way. We went over a lot of things that we had discussed with the radiologist and it was helpful to review and confirm all those things. I liked how the Dr. and the PA-C worked and communicated together. Most of all I liked how everything and everyone in the room felt together on the same page and track. It just felt right. And to this day, 4 plus months later, it still feels that way each and every time Isee either of them and I couldn’t be more grateful. I remember feeling a little overwhelmed with the weekly appointments along with what felt like constant radiation but was at the same time excited to be doing something significant.

August 25, 2023

We saw our PCP again. In preparation for the upcoming vist with the medical oncologist, Dr. W. ordered some blood work and prescribed iron supplements since David’s iron is still very low. He wanted to be sure David was not in need of another blood transfusion before that appointment.

KINDA-WELL WELLNESS CHECK (-d)

Having a “regular” wellness check-up in the middle of cancer diagnosis and treatment feels weird. It’s a good thing obviously and a chance for me to get info on just about everything except what I’ve been talking about for months, but still feels odd. More blood tests but not the multiple viles and pages long ones I’m used to. Good news is my weight and other numbers are down from previous levels. Less ideal news as everyone in the room knows is why that’s the case.

HOBBIES OF THE MOMENT: various methods of cancer treatments, iPAD games, reading a book I might finish, circle a word.

August 22, 2023

David saw a radiology oncologist (we will call him Dr. Wa since our PCP is also Dr. W).The nurse went over past history and asked many questions and then explained how radiation works. She said it would stop the bleeding David had been experiencing and David was very glad to hear this. She asked about his pain level and David said with meds it was a 5 and without it was a 7. She explained they would set an appointment for their own non diagnostic CT scan that would help them set up and target for the radiation treatments. She told us radiation would be every day and gave David some tips for managing the side effects. Dr. Wa came in and said right away that Dr. C did the right thing by opting to stop surgery and recommend radiation. He explained they wanted an R0 resection which basically means no parts of the tumor remain even microscopically and the radiation will help ensure that. He explained that in order to do this though, we would need to see a Medical Oncologist who would direct the plan. Med Oncs are usually hematologists, and he would treat the anemia as well. Dr. Wa explained the various schools of thought regarding chemotherapy/radiation treatment combos. Dr. Wa office’s made an appointment with a medical oncologist for September 6. He explained the PET scans appointments were taking a month or more for scheduling so he went ahead and sent the orders for David to have one. (Update: our insurance initially denied the scan and Dr. Wa had to have a peer-to-peer meeting with the insurance doctor and was able to then get it approved. We initially got an appointment for a scan in October but found a location in Atlanta that could do it on 9/22)

INFORMATIVE DECISIONS (-d)

Lots of information on this visit. Some of it was great news like that my bleeding could stop. I felt like if we could get control of that, my blood issues would be helped a lot.

Then, a lot of information on not just how radiation works but also the many different types of how cancer treatment can work in general. It felt like a lot at the time, but looking back it was a good primer for hearing similar things from our oncologist later. The radiation seemed a little intense, but I was really ready for anything in any way that could make a significant difference. Picking an oncologist wasn’t the easiest thing but I tried to stay inside a group that I already trusted and felt good about, and surprisingly enough even though it wasn’t exactly what I had expected it turned out to be the perfect fit. Call it what you want, blessings, luck, fortune, etc. but I’ve had more of them like this in this experience (and honestly in my life) than I can count. The PET scan seemed significant, and I remember really wishing I could have it sooner rather than later. So when we were able to move it up about a month I was really happy with that.

August 15, 2023

After a long and nearly sleepless night, we arrived at the hospital at 5:30 am. We checked in and sat down to wait. We had already been told that I would not be able to go with him to the prep area, so the waiting room was the last stop for me. The nurse came for him and let us grab a quick hug and say our I love yous. The nurse told me she would bring out his clothes and glasses once he went back for surgery. At 7:15 a patient representative started circulating throughout the waiting room explaining that we could see the patient’s status on the screen on the wall. Sort of like looking at flight at the airport. She gave me a card with a unique number that was for David. I got up and looked and at that time, it showed it was in the prep area. Around 8:00 the nurse brought out a bag with his clothes and glasses as promised. She said he was doing well and on his way to surgery. Dr. C has told us surgery could last around 1.5-2 hours. So I settled in to be anxious and write. I figured that would be a good way to get my thoughts down and pass the time. I checked the screen a few times and it showed him in surgery. Dr. C appeared in front of me around 9:55. He immediately said David was fine and would be fine and asked that we go into a room to speak. Of course, I felt the panic start to rise at this point. Something was wrong. We went into a small room near the waiting room and he explained that once he got to the tumor, he saw that the tumor had pushed thorough the colon wall and was touching his bladder. The MRI did not clearly show an involvement with another organ, so it was unexpected. He said he was not sure if it was just touching the bladder or if the tumor was attached to the peritoneum membrane surrounding the bladder. Either way, he decided it was best to stop the surgery and refer David to a radiology oncologist. He told me he recommends radiation therapy to shrink the tumor away from the bladder so that he would not have to take so much of David’s bladder trying to ensure he got all chances of the disease. He said treatments would most likely be done for 5-6 weeks 5 days per week and he would put us in touch with an oncologist. He said David’s liver looked good, but he would also like a PET scan to show us any further spread. Dr. C told me he put in metal clip in the area of the tumor for radiation targeting. He noted again that there still would be no need for an ostomy. He told me to take whatever time I needed to make phones calls and then they would call me to come see him in recovery.

They called for me to come to recovery around 11:00. David looked good considering and was still a little groggy. Did I mention he is irritable after anesthesia.? 🙂 Dr. C had stopped to speak with him after he spoke with me so David was aware of the issue. We decided we would go back to the hotel and stay the night just in case he needed to go back to the hospital. We left the hospital around 12:45 and went to the pharmacy nearby to pick up his pain medication.  I got him some soup and juices and we went back to the hotel. He was sent home with a spirometer with strict instructions to use it every hour. He was in some pain but we managed to watch some tele and sleep a while.

KINDA SOME SURGERY (-d)

Going into surgery I was obviously nervous but couldn’t have asked for better double-checking and reassurance. The warming machine was a nice touch. I got an extra fall risk bracelet after explaining my IV passing out situation. I got a nice hair net and more importantly a similar beard net just to keep everything together. I’m sure I looked awesome. Lots of waiting as everything was prepared and checked again. Then it was time to make the trip into the cold bright operating room. Oddly enough, the cold brightness of operating rooms has always made me feel more comfortable than not. A few general questions and a little counting backwards from 100 and then I woke up in the recovery room.

Waking up in the recovery room the first thing I felt was the calf squeezing things working to push my blood around and was oddly irritated every single time. I was very happy when they were taken off. In and out for a bit until I finally recognized my name from the nurse watching over me. Then not too long after that I received a similar update from Dr. C. Good news the surgery had gone fine. Less good news, he couldn’t remove anything and there were questions about how and what it could be attached to. But soon after that I was reassured that we have a plan of how to deal with it and would be making progress as soon as possible. He wasn’t sure I’d remember how much he said so was sure to mention that he had said the same to DeeGee and that we were free to follow-up with any questions or concerns as soon as we had them. I was disappointed but not too bad. I really wanted it out, but more than that I wanted to do what was right to make sure we got as much of the cancer out of my system the best way possible. As it turns out, I’d need a team of people and a lot of decisions made over several months for that to be the case, but it was what I wanted way back then and still what I want now.

Back to the hotel to recover for the evening before going home. The pain got worse as various drugs wore off but was held at bay by the drugs given to me after surgery. I’m sure it was better than large cuts across my abdomen, but the best way I could describe it would be like being stabbed a few times around my abdomen. Certainly less than ideal, but they do make for kinda impressive and expensive tattoos that build up over time I suppose.

August 14, 2023

David had to go over to the hospital to have his blood cross matched for surgery. Since his hemoglobin and iron counts were still low, this was a precaution in case blood was needed during surgery. Because we would need to be at the hospital at 5:30 am the next morning, we decided to spend the night in a hotel next door to the hospital. He has to start the colon prep at 12 pm today and we both agreed this would be better for us than having to get up so early and drive over to the hospital. We had already decided that I would stay at the hotel while David was in the hospital, so I would have a place to shower and change clothes without driving back and forth. So we got checked in and David started his prep.

CROSS REMATCH (-d)

Lots more pre-operation questions along with more blood work and cross matching and the magic RED BAND that identifies my blood type and match and everything. Days before I had gotten pink scrub down stuff to make sure I’m extra extra clean before surgery so that was something different, too. The hotel was a great idea and being really close made it a lot easier instead of having to drive a long way after the prep. Not much sleep with nerves and/or prep effects but couldn’t have expected much better. I remember really just wanting to get it started and over with.

August 8, 2023

David went for a CT and MRI scan. He previously picked up the contrast he had to drink prior to the test and the day of the test. He said the CT went fine and the MRI was extremely loud and annoying despite the earphones they gave him to wear. We were at the imaging place around 2 hours.

EVERYWHERE SOUNDS (-d)

So many MRI sounds. For. So. Long. I had no idea. Easily at this moment one of my least favorite parts of this entire process. It was tough and long. Definitely worth it to get information and results, but, in the future, I will do my best to hear the least of those sounds for the least amount of time reasonably possible. I was very very glad when it was over.

July 24, 2023

We met with the colorectal surgeon (Dr. C). He ordered an additional CT scan as well as an MRI. He believes he can safely remove the part of David’s colon that contains the tumor and after a digital exam, (whoa boy!) he was confident there would be room to reattach without needing an ostomy. He explained that had the tumor been lower, he would have needed to send David for radiation treatment to try to shrink the tumor. He said this was standard to try to avoid an ostomy if possible. We were relieved to hear this. He mentioned it was preferable to be able perform the surgery using robotic technology but that he also thought we needed to get on the schedule as soon as possible. If the robot was not available, then he would need to perform the surgery the “old fashioned way” which was a good surgery but would mean a more invasive surgery and a longer recovery time. As we were leaving the office we stopped at the scheduler. She told us a spot had just opened up using the robot due to a cancellation so we said we would take it. Surgery is scheduled for August 15. Dr. C said we could expect that David would be in the hospital 3-4 days.

LET’S GET IT OUT (-d)
I can’t remember being more stressed out and concerned than waiting at this appointment. Also I can’t remember being less stressed or concerned after it. The digital exam wasn’t a lot of fun, but the confirmations I received from it and everything else was definitely worth it. Lots of pictures and diagrams to show me where and what we were dealing with made it even better. Quicker robotic surgery also sounded good to me, and I couldn’t believe we were fortunate enough to have an earlier opening. I was a little nervous about the recovery but felt like I was in very good hands and and trusted everyone on my team (and still do).

HOBBIES OF THE MOMENT: old tv and movies, iPAD games, reading some books I won’t finish, looking into how CT and MRI scans work, and the anatomy and physiology of my lower abdomen.

July 18, 2023

We arrived for the colonoscopy at 12:30. They took him back for the procedure at 1:11. They called me to come to recovery at 2:05. David was pale, irritated and in discomfort when I got there (he is a little grumpy coming out of anesthesia) Dr. G stopped by to report he found a mass in the colon and he biopsied it. He also performed 4 polypectomies. His opinion was that the pathology on the biopsy would most likely show a malignancy. “It is Cancer” I held David’s hand and squeezed as hard as I could. I was trying to will the tears to just wait. Dr, G. said we would receive a letter with the lab results.  Stunned, I felt like I should ask something so I said the first thing I could think of which was “how bad do you think it is” and he said he didn’t know.  I knew it was a stupid question as soon as it left my mouth. I recall sitting there in silence for a few moments. As if all sounds around us ceased to exist. The nurse then got up to help David get up and get dressed while quietly whispering prayers for the both of us. She said I could bring the car around. Not to sound overly dramatic, but I walked out of there thinking how was I to just simply walk calmly out to the car. I felt as if I were navigating through jello. My feet didn’t want to move but also they wanted to run. I refused to make eye contact with anyone in the elevator or as I made my way through the hospital to the parking lot. I remember thinking I would surely have a panic attack and once I hit the pavement I said out loud to myself, you just have to make it to the car. Only 50 steps. Only 10 more steps. I managed to drive around to the place the nurse told me to go. I picked David up and we drove through the parking lot stunned. I parked in a spot, and we sat there in silence for a while just holding hands with the weight of the information. Just trying to process it all. I finally looked at David with tears in my eyes and said… “f*ing cancer”.

NOT LIKE TV (-d)

I’m sure it’s different for everyone, but for me I tend to describe it as “not like it is on TV” or movies or whatever. There were no padded leather chairs in a big wooden office with the doctor on one side of the desk and my family gathered around the other for an announcement. Then a lot of emotion and/or discussion, etc. In hindsight, that’s nothing I would have wanted anyway. For me there was the news it was most likely cancer, some helpful numbers, pictures, and drawings, and the next contacts and things that would happen, then there was silence. Not actual silence mind you. There was the noise of the recovery area, the guy next door who just happened to have my same first name, there was the older nurse with an accent quietly praying blessings for me and my family after she heard and was helping get things together, there was the squeeze and the feel/sound of emotion I from my wife, and the general feeling of knowledge around me that I was moving on to another significant step in this process. But for me there was silence in my own head. Later in the car that silence would end and in the hour or so on they way home, I would look basically everything you shouldn’t look up after getting any of the information I had. After that, the only way I can describe it is that I lost several days to… I don’t even know what thoughts or feelings. I just remember kind of coming to a few days later knowing I couldn’t continue down that path or feeling like that and that I had to come back out of it. So I did. And I refuse to and have not visited those places since.

July 17, 2023

David (and I) suffered through colonoscopy prep. Whew!

CLEANED OUT (-d)
There are words for this, but not words that I’m really willing to write about this. If you’ve heard stories, they’re most likely true. If they seem a little over the top, there’s a good chance they are not. Let’s just say that whatever method is used should “clean you out” in preparation for a colonoscopy, and this method certainly did that effectively. I guess like many things in life, I questioned it while going through it, but afterwards I understood and understand its purpose and would and will do it the same way in the future.

July 7, 2023

David had more blood work and then had an appointment with a gastroenterologist (Dr. G). We discussed the abnormal lab results and abdominal pain. He noted from the CT scan mild mural thickening of the rectosigmoid area with distal colonic diverticulosis without the evidence of diverticulitis. According to after visit notes, Dr. G stated David could just have ulcerative colitis or proctocolitis but was more concerned about a malignancy. He ordered a prompt colonoscopy with possible polypectomy and biopsy.

CEA Tumor marker 5.5

GIVEN STRAIGHT (-d)

Dr. G gave it to me as straight as I could have ever wanted, and I can’t say how much I appreciate that in hindsight. He went over the details of every option and reviewed any and all questions I had. His concern was significant and everything he did showed that. I can’t say that it made me feel “better” because of everything concerned, but it made me feel like I was in good hands, and that’s exactly what I needed at that moment.

June 29, 2023

David had a CT (COMPUTED TOMOGRAPHY) (CAT scan) with contrast at our local hospital. Dr. W called with the results and explained the scan showed some thickening of the colon wall along with some diverticula. Proctitis was noted. The thickening of the wall can indicate cancer. Dr. W noted that it showed that his liver looked clear from spots. The liver is usually the first organ where colorectal cancer will spread.

SCANNED (-d)

First experience with contrast for CT scan (and maybe first CT scan) and with the exception of one IV not wanting to start it went really well. No passing out. I was a little nervous and everybody was super helpful and explained everything each step of the way. Really pleased with the experience. Also seeing all the CT stuff was cool and I got a really close look at how closely all the seams and gaps of the machine are put together.

June 28, 2023

David had a blood transfusion with iron at our local hospital. He received two units of blood and one unit of iron. After the first unit of blood was flowing for around 30 minutes, the nurse started the IV on the iron treatment. The IV was inserted into his left hand. After 5 minutes or so, David became clammy and I asked if he felt ok. He said I better get the nurse. I called for the nurse and when she got there, David lost consciousness. His heart rate fell rapidly, and a Rapid Code was called for him. Many people from different areas of the hospital responded to the Treatment Room. I walked out into the hall to give them room to work if needed. He was out a few minutes and then I heard him talking to the nurses. As one was asking about seizure history, David’s heart rate dropped, and he lost consciousness again. He said he could feel it coming on as he spoke with the nurses. By this time, they had contact Dr. W who was heading to the room. David came to again and after speaking with him, Dr. W ruled out an issue with the blood being given and determined it was a response to the pain he felt in his hand from the IV called vasovagal syncope. Basically, this occurs when your body overreacts to certain triggers. Dr. W. explained this was something that would need to be mentioned to medical staff going forward. It is usually harmless and may be avoided by laying straight back while an IV line is being inserted or blood is being taken. Because it is such a dramatic response with a rapid decrease in heart rate, they attached an EKG to David as a precaution. David has always given blood and never experienced this issue but he said the IV line hurt and his brain locked on to that pain and ran with it. The EKG was normal. The transfusion was restarted and went well.

IN AND OUT AND IN AGAIN (-d)

What a day, huh? I think I was doing really well until the part where I decided not to let the nurse or anyone know that the IV going into my hand was really really painful. My logic was that if I could get through it and it cleared and worked (which it did), I wouldn’t have to go through it again. Which did actually work, I just had to make it through the passing out twice to get there. In hindsight, I should have mentioned it immediately. I suppose I give myself a few tenths of a point for mentioning that the room was closing in and everything was going fuzzy moments before I went out though. Really, really grateful for everyone who was there when I came to and the even more people that were there when I came to the second time. Also I can’t express how great it was to be listened to by them so that we could all understand what happened and what I needed to be watched for. It also gave me some valuable information that I still share with each and every person that starts an IV in me from now on. Sometimes it even earns me a special wrist band. 🙂

HOBBIES OF THE MOMENT: old western tv and movies, John Wayne, The Rifleman, Gunsmoke, etc.

June 27, 2023

David went to the local hospital to get blood crossmatch testing for a blood transfusion. This is done to ensure the donated blood is a match for the recipient. All blood has the same parts but not all blood is the same type. People have different types bases on antigens. Antigens trigger the body’s immune system.  An incompatible transfusion can result in the recipient’s immune system attacking the donated blood causing serious or life-threatening reactions. He got a red wrist band he had to keep on until he came back. If it got wet and damaged, the crossmatch would need to be done again.

STUCK. REPEATEDLY. (-d)

This point is the beginning of when I start being stuck by needles more times than I ever have been in my life. Interestingly enough, I was terrified of needles as a kid and have gotten only slightly less afraid as life has gone on. At this point, it’s not my favorite thing but at least my blood pressure stays within reasonable limits at the thought of it. I’ve never had a blood transfusion before, so I’m a little nervous about it at this point but I see it is a necessity, and I’m definitely on board with it. My biggest questions at this point are finding our way around to the different departments and places to get all the lab and transfusion work done. That said, at every point there was someone if not several really helpful people that guided us and reassured me every step of the way.

On June 26, 2023, David saw his PCP (Dr. W) because he had been passing blood and had pelvic pain. He had also become intolerant of certain foods which was odd because he has always been able to eat anything. Dr. W. immediately noted how pale he was. Blood work was done and showed David had a low hemoglobin (7.5) and low iron saturation (2-Iron Deficient Anemia). He needed a blood transfusion along with iron.  A transfusion and a CT Scan was ordered. Diverticulitis and ulcerative colitis was discussed as possibilities. Cancer was mentioned but we didn’t really want to run with that thought. It, of course, was very much on our minds. All of these things can present with similar symptoms as well as blood loss and anemia. Dr. W referred us to a gastroenterologist, Dr. G.  We opted to go to Piedmont Fayette for this appointment.

NOT RIGHT (-d)

I thought it was hemorrhoids, and years ago it probably was. But as time went on I remember a point where they seemed to get worse, and I think that was the beginning of this. Much more discomfort, more bleeding, etc. It was easier to just chalk it up to getting older and push through it. I thought about getting tested but I was “officially” younger than the recommendation at the time so it wasn’t hard to put off. Of course, in hindsight I wish I had not and would advise anyone to get tested as soon as they can especially if they have any history or doubts. I didn’t/don’t know much about my history but I’m thankful to be able to start it for others in the future.

All that said, at this point in time, my biggest concern was that I would end up with some diagnosis that would prevent me from eating anything with flavor (heat) for the rest of my life. Honestly, even now (6 months later), I’m very grateful that ended up not being the case. Of course I was worried about the blood loss and knew cancer was a possibility, but I’ve always enjoyed different types and more significant flavors in food, and feel like it’s a significant part of who I am.

A little about what it is….

David and I have been together for 32 years and counting. Nearly 25 of those years are recorded in marital “bliss”. Like many in long lasting relationships, we have been through just about everything together over the years. Saying we are together all of the time is a ridiculous understatement. We do things together and talk about things together. If someone sees one of us without the other in some rare circumstance, we hear “Where is David or where is DeeGee”

In the late Summer of 2023, David and I found out that he had Stage 4 Colorectal Cancer. From that point forward, this meant “WE” had cancer and the kind that is a literal pain in the ass. Some people know and some don’t. We get lots of texts and messages from people asking how he is doing. People tell me they hate to be a bother but still want us to know we have friends willing to help in any way. So, David and I wanted a way to update people on his…I don’t even know what word to use? Cancer journey? Health? Progress? Predicament?

Anywho… we thought a blog would be a great 1990s way to update family, friends, and even the occasional stranger. We hope this will also serve as a outlet for our sometimes positive, usually pessimistic and irreverent and always humorous thoughts on this Cancer Odyssey? Expedition? Trek? Excursion? Peregrination? oooh…I like that last one.

Our writing style may be odd and not adhere to any known grammatical standards, but we write with heart and always try to find humor in any situation even if we are the only ones that think it is funny. Read this any way you want. Last thoughts first or hit the HISTORY option and read it in chronological order.

Shall we? …

MY PART (-d)

Yeah, exactly what she said. 🙂