Recovery – Day # 97
I am very aware that I tend to sugar coat things and make it seem like everything is fine and I’m always doing great, so today I am going to talk about the other side of it. Then with that all out of the way, I’m going to relax and enjoy the gift of being in recovery and having few responsibilities other than recovering.
I feel great. Unfortunately, this worries me. I know I should not worry, but it is really hard not to worry when you have had your immune system completely taken away from you, gone through a major course of Chemotherapy, and almost died with no explanation of why you actually passed out for hours in the hospital.
They don’t want me to say it was a seizer or a stroke, but I’m pretty sure it was a stroke. I have cognitive deficits and I cannot talk normal yet, although I am getting better day-by-day. The worst of the cognitive problems I’m having is that if I try to do anything that involves more than one task at a time or I get really overwhelmed, start to cry, and stop thinking completely.
All of the other doctors who have seen my notes from the time of my unconsciousness in the hospital seem to think it was a stroke, so that is the official answer I am going with. The neurologist for the study I was in calls it a “spell” due to overactive neuron firings in the brain. I just feel better giving it an actual name.
Since I don’t want to waste these great days I’m having worrying that I’m not getting sick like most people do after the HSCT transplant, I am counting my blessings that I feel great, rather than thinking about what might happen. I am working out and finally starting to feel as if my body is my own again, and I am enjoying the company of my children immensely.
When I do have so called ‘bad days,’ usually due to overdoing things because I almost feel completely normal again, I remind myself what it felt like before I got into the study and underwent the HSCT. I had constant neuropathic pain that could not be killed, even while I was taking the maximum dose of narcotics I could safely take. Feeling a little pain and fatigue is way better than that!
The other thing I do when I am feeling scared that it is going too well for me post transplant and I may have a huge upcoming illness, is remind myself of how horrible and long the days were in the hospital when I could hardly stand to be alive. I had every possible negative reaction to all the drugs they gave me. A nurse once told me that patients who have the worst engraphtment syndrome, which I had among all the other negative side effects, tend to get better faster. So I am thankful for that. They fact that I’m working out and getting strong just 3 months post transplant is amazing, and I must remember that. Instead of dwelling on what might and could happen, I’m living in the moment of pain free happiness and a bright future!