Radiation Week

Feb 8th

There was a show when I was a kid. It didn’t run long and I don’t remember the name except that it was a girl’s name but I really like the show. It was from the 80’s. The gal was blonde and she could put her arms out wide and bring her pointer fingers together in front of her face and time stopped. People froze, the wind stood still and clocks stopped ticking. She could take that time to think, fix something or keep an accident from happening. When she was done she would put her arms out wide again and bring her palms together in from on her face and time picked up where it left off except for anything she might have changed.

I always wanted to do that. Just touch my fingertips together to stop the madness. It might mean a nap, time to get more chores done, time to read or think or just time to stare at my kids a little longer while they little. If I had a superpower it would be to minipulate time or to fly. Its a close contest. I have never felt like I had enough time. As a kid I wanted to do everything and go everywhere and as an adult I still do but now I’m okay with not being involved with everything, it actually wasn’t as awesome as you might think ( in the long run). I want to just be able do all the not fun stuff with time standing still so that when its running you can just focus on the task or person at hand. I’d like to be able to think in the middle of madness and I’d like to be able to get my dishes done and take my time and enjoy the hot sudsy water on my hands. I could finish ALL my projects and not be torn as to where I should be.

But that’s not happening so I can’t focus on that. Thats a waste of my brain cells and I seem to be losing more of them quicker! Even right now…I’m like–do I finish this blog or call the bank?–I’m always so torn. We are at Davita so we can work the fistula but it was acting up so he is just on his CVC today and I feel bad because I could have done that at home however, his blood pressures have been down and they don’t want me to take off fluid at home and he really needs the fluid to be off. It is uncomfortable and causes other issues.

Mark was very sleepy this last week. His appetite is still small and so anythign he eats is good as the good weight he put on is long gone and the new weight is just water retention/edema. He says he falls into very deep sleeps and have very vivid dreams. He often wakes up talking to me about something I have no idea where it came from but he was dreaming it so…

We wondered all week if his hemoglobin was low….or if it was just his low BP that makes him feel like crap or if even its just this growing cancer inside of him. Whatever it is, we would like to fix it. He is still off chemo til Saturday as he cannot be on it while he is getting radiation. Radiation was yesterday, tomorrow and Friday. We do go to Ann Arbor for that but if he wants/needs any other less specific radiation (like in pelvis area) then he can do that in Grand Rapids and I believe he can be on chemo for that. Immunotherapy will start back soon as well but the oncologist says the chemo pill is more important and the immunotherapy can come in later. We are scheduled for March 7th but I often go into the portal and ask for sooner. (I really should call). I don’t really know what to say more on this treatment. He vomited on the way home after but he has felt more nauseous lately and so I’m not sure if its related to the radiation or not. He does feel more stable in his back. The surgery, as horrible as it was, was good for that. I was worried that his growing abdomen (from fluid retention) would mess up the simulation marks for radiation but I guess it did not. Why do I even think of these things!? Some days I wish my brain would shut off.

Today is also the second ultrasound of Felicity’s baby so I’ll bring Mark home (or somewhere if we are short on time) so that I can take her there and see the baby. She actually looks pregnant now. She is due in 2.5 months so keep praying that things will fall into place for her (and by that I mean she continue to take action steps to do what’s best for her and baby. It’s super easy to move on emotion, we all do, so I pray that she cognitively tries to sift through the emotions while making decisions). She is a first time mom, we (well, the mom’s reading this) have all been there and we are blown away by how hard it is to give birth and be a mom. It’s hard to tell someone that. They just have to experience it for themselves and I pray it’s what she can handle. She has support but you want to be able to do it on your own, ya know? I know I did. I pray for her to look through the frills and cuteness of it all so that she can be solid and prepared. (Just to be clear…I’m excited about the cuteness too!)

There has been just alot of emotion (not out of control) but I feel like there are so many pillars to hold up this situation. The dialysis and getting the fistula going and doing it all at home. There is cancer and getting those meds to set up and staying on top of the oncologist and wondering if there is better treatment. There is the pillar of health overall and making sure he has good real food available that he likes and dealing with regiments and supplements to help him feel good and keep his body functioning in the best way that it can. There is just keeping up with the house. There is the mom pillar….spending time with your kids and knowing what is going on in their lives too. Then, of course, there is the wife pillar. Being his friend and companion. I spent alot of Friday afternoon watching him sleep. I had stayed home to just do…well nothing or anything…and dialysis went long and he didn’t get home til 3 and he was exhausted. He slept til 7. I would watch him as I bustled about the house. I wonder how he is feeling. I worry he is getting worse and we don’t know. I wondered if his hemoglobin was low…if it would go too low again. I wondered what he was dreaming about. I wondered if I could do something different to help him more. We have alot of time in car to talk but it’s often silent. He doesn’t feel good or he sleeps or we listen to something. It’s fine. Mark has always been really good about saying what he is thinking when he wants. He doesn’t hold back. I do. I think I fear my own emotions. He must often think I don’t care but I just get lost in the little have-tos of life so I don’t have to think about it. Because I don’t know what to think. There is nothing I can do to make him better. There is no pillar I can let fall.