Day +14

Been a bit of a gap, but I’m now at day +14 post transplant. So far there has be no official record of engraftment, which means I’m still at 0 neutrophils. However, I feel that I am close: my throat pain has gotten better, which the only way to account for that is that some white cells have been made.  They just got recruited to the trouble areas and aren’t floating around the bloodstream to be picked up in a blood draw. The saying around here is that the patient often gets a few days heads up before when the labs show engraftment because the mouth sores start to feel a little better.

As far as my issues. I feel pretty pleased, nothing I haven’t experienced before, nothing crazy, nothing to go down to the ICU. No need for opiates to cover pain.  I did have a GI bleed that resulted in a scope. But the scope was productive and the gastrointerologists were able to apply a clip to an ulcer in my upper stomach that was oozing and continuing to cause a source of blood to be in my gut—and therefore nausea. The name of the game has been controlling nausea which I’ve done decently well. I’ve learned it arrive fast so best to stick to scheduled nausea which for me has been around the clock Zofran and Ativan. I tried Reglan, another common anti-nauseau for the first time yesterday but it sped up my bowels a bit (one of its mechanisms of action) and I didn’t want to risk another day of that. So off the Reglan again. One of the frustrating things for me is the lack of control for the anti-nausea administration and selection. At home, I have my pills, I can take them the instant I start feeling something. Here, there is delay: I have to press the call button to get someone to come to the room, then request the medicine, then the nurse has to go to the medicine room and return with a vial. Then the medicine in the vial needs to be put into a syringe, and shot into my IV line. Three times, I had already had vomiting bouts before the nurse returned with the medicine. It was frustrating because vomiting aggravated my GI tare, and then I would lose ground and blood. So it was a big deal, but I couldn’t work the system any except for doing more preemptive, scheduled anti-nausea. I asked if we could just leave some in the room, but there are strict rules surrounding these drugs (Ativan in particular), so they can’t be left out and ready in the room, in fact the time it takes once it’s scanned out of the med room til it’s scanned using my bracelet, is recorded. 

I’ve had loads of visitors which has helped pass the time, I also have been watching lots of sports and sportscenter, reading a few sports blogs, listening to soccer podcasts (Men in Blazers and Guardian Football Weekly), and TBTL podcasts, and finishing my favorite tv show: Rick and Morty (upset that I only have re-runs left in this gem). That reminds me if you want to listen to a good podcast that covers many of the details of bone marrow transplant, but isn’t really about transplant, radiolab posted a pod recently called a Match Made in Marrow and it’s cool because you get both the donor’s and patient’s perspectives. However you also get wrapped up into the donors moral quagmire of sacrificing part of one belief to help another—which is interesting too, but nothing to do with transplant.  It really resonated with me because the patient was similar: 29 yo male with ALL. The story also happened in 2009, so a bit dated in terms of recent science/treatment, so mine was a little different in a few ways: for example there is a push to do fresh cell transplants now and my cells were fresh and came all the way from Germany, while his cells were frozen and were from the US. Maybe there was a complication and reason for this, it didn’t explain. There’s also a registry of 70 million people now while there were only 8 million then, so it is more likely for Americans of European decent to find matches. It’s a good background, but the main point of the story is actually about faith and how the donor weighs her values internally about being involved in a magic show with a Christian twist (donor doesn’t like), but one that also registers 150 people to the bethematch registry every show (donor likes).   Intrigued? Go to the radiolab website or podcast page and take a listen! All for now.

 showing off those tummy-time skillz he's been working so hard at

Hard to tell, but Alpen does have longer hair