Day +5: new life experiences

As most of you know, I got new bone marrow on Thursday. I am pretty stoked about this because as we know my old bone marrow was really worse than useless.

The word ‘transplant’ elicits exciting visions of surgery and bone drilling etc., but actual bone marrow transplants are decently boring. Before the transplant there were four days of really strong chemo to kill all of my existing bone marrow. Then I got two rest days which were basically fake rest days because I was still so sick from the chemo.

Transplant day is referred to as ‘Day 0’ and the day itself is pretty exciting. There is a cool energy for this new chapter in life where I have bone marrow that doesn’t try to murder me. My brother had to get to the hospital at 8 AM and spent 4 hours getting his stem cells harvested from his bloodstream (it is kind of like giving platelets where they filter the stem cells out of the blood then put the blood back in). This was decently uneventful and he was mainly super tired.

Then, we were supposed to do this really chill transfusion where they just drip the new stem cells into my central line and we go on with our lives until the transplant side effects kick in. Unfortunately, my body had other plans and I reacted harshly to a steroid they gave me to prevent rejection. My blood pressure shot up super high and my chest was hurting and about an hour into it I had a transfusion reaction where my type O cells killed the small amount of his residual type A cells in the transplant (it basically makes your kidneys freak out).

There is this weird rule about bone marrow transplants where you can’t stop the transplant. This totally makes sense if you think about it – we already killed all of my bone marrow and you can’t just not have bone marrow so they keep going even if you have an anaphylactic reaction (luckily I didn’t go all the way there).

So anyway we made it through the transplant and then the next day I weirdly had a massive grand mal seizure which we think was caused by the high blood pressure from the steroid. Luckily, that means it shouldn’t happen again but it was still a little freaky. If you are wondering what a seizure feels like, I can’t remember it at all. I do remember before because I was laughing and randomly started crying and saying that I felt like I was losing control of my body. Then I remember waking up and feeling like I had the worst hangover + blackout imaginable (not that I know what that feels like).

So the past couple of days I have had tons of tests done on my brain and to my delight everything is perfectly average up there.

With regard to the rest of the post-transplant experience, next on the agenda is for my entire digestive system to fail/get painful sores all over from my mouth to stomach to intestines. I actually just coughed and felt a chunk of my throat come off. Also, I will have absolutely no immune system for a few weeks while I wait for the new bone marrow to engraft so I will probably get some awful infections or something. Once it engrafts the infections will go away and I will get graft versus host disease. So far I wake up every day feeling shocked that I am decently fine but I am assured that my time will come. Overall, it is starting to hit me that there may be an end to being sick and this could all someday be a memory – I still have so long to go, including 6-9 months of recovery from the bone marrow transplant and then a very high chance of relapse, but life without AML is starting to feel like a sliver of a possibility. 

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