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.
