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.