BMT Day +44

An actual update.

I’ve been home for a total of 25 days. In some ways it seems like a lot and other ways it seems like I just left the hospital. I’m slowly starting to feel a bit better each day. Some days are better than others. Everybody wants to know how I’m feeling and my best answer is “fine”. The thing is, I know what feeling good feels like. I’m not so removed from that feeling that I don’t remember what it feels like. I can tell you that I don’t feel good. Walking is a chore. Walking up the stairs is challenging. I do my best to walk and exercise each day but it’s not easy. I want to, but feeling like I do, it doesn’t make it easy.

I shaved for the first time since my transplant. I’ve been steadily losing more and more hair. If I haven’t completely lose the hair somewhere, it’s drastically thinner for sure. I finally shaved my head for the first time since the beginning of October because I’ve had a few patches that were growing but most of my hair still isn’t coming back yet.

My appetite has slowly started to come back but I don’t have any desire or cravings for most food. I eat because I’m supposed to, not because I want to. One of the side effects of both the transplant and the chemo are taste changes and a weird taste in your mouth. Salty food tastes metallic and some foods just plain taste weird. I’ve read of some people having strong aversions to water but thankfully I don’t seem to mind water. I’m just not getting back to drinking coffee.

Nausea is still there. Although it’s greatly diminished from what it was in the hospital, and thankfully I’ve not had any bouts of vomiting. However, the constant nausea is always a factor. It’s worse in the morning and it takes some time for me to get up and get going simply from my stomach wanting to flip and turn until a couple hours after getting up. I’m still taking some type of anti-nausea meds almost everyday but have been able to get a few days in where I don’t take it or take a lower dose.

My counts are moving in the right direction. My white blood cell count is approaching normal. My hemoglobin and red blood cells are not far behind. My platelets are coming up as well, and I haven’t need a magnesium infusion in a week. So from those perspectives, things are definitely improving. I wish that it was correlating to how I felt though.

I’m down to only needed to go to the clinic twice a week. That could always change based on what my labs look like at each visit. From an overall standpoint it would appear that things are gong well. My immune system is still developing and in the process we’re still in the monitoring phase as we look for different potential signs of graft vs host disease (GvHD). As my immune system gets stronger, so too could the symptoms I might face. Might. My doctors are adjusting my levels and doing their best to keep things under control, while still, at the same time, trying to let my new immune system grow and kill off any remaining leukemia. It’s a tight line to walk. That’s part of the reason why I’m still quarantined. I can’t really risk getting sick. Getting sick means my new immune system will flair up. During those flair ups, it’s possible that it will see it’s host (me) as a foreign invader and could end up attacking anything (and doing it aggressively).

My next big test is at Day 60 where we’ll retest the chimerisms. My first test results from Day 30 came back and while they were promising, they weren’t as conclusive as I would have liked for them to be. The docs adjusted my meds and we’re paying close eye on the other numbers. Again, while everything appears to be going very well, it’s still too early to get excited. I’ve seen too many cases and have had too many setbacks to know that everything doesn’t always go perfectly according to plan. And that’s ok! One way or another, things will work out. It might not be the way we had originally intended but things will work out and I’ll be good.

As of now, like I keep saying, it’s one day at a time. I can control the now. I can’t always control how I feel but I can control how I react. I can do my best to keep exercising and eating right. I’ll give my body every chance to keep fighting and I’ll live everyday thankful to have had the opportunity.