It's Sunday night and I'm sitting here on my nice sectional sofa here at the Residence Inn in Needham, MA. It's very nice. Spacious. Clean. And a nice place to spend a few days. We thought it was the safest option. Safest option, you might be wondering. 😕😕 What's that all about? How did we get here?
Lest I bury the lede, I feel fine. But it's been an adventurous couple of weeks. Last we checked in, I was waiting on CT results and confirmation of bone marrow scans. And after meeting with my team in early August, we confirmed that the bone marrow was clean, the scans looked good and the mutations we had seen pre-transplant - particularly the troublesome TP53 mutation, which is implicated in many cancers -- are no longer there. There's even the potential that I have a new mutation, from my donor, that might actually confer some benefit. Interesting. This swapping of genetic mutations amazes me a bit -- and it also confirms why we went with the donor-based transplant instead of my own stem cells. (I wrote about this when we first made the decision to do the donor transplant back in November. )
So all good, right? Well here's where things got interesting -- or stressful if you're actually going through it. 😟 After going in for the usual blood work and appointment on Monday, the 28th, the labs showed that my white blood cells had dropped unexpectedly, and we found out later in the week that my neutrophils were also very low. More labs on that Wednesday showed not a whole lot of improvement and my neutrophils were basically zero. So we got a little shot of neupogen, which is supposed to give a shout out to my bone marrow to go ahead and do your job and start cranking out the WBCs. That seemed to work... or I just naturally recovered because by Sunday, when we tested again, they had recovered enough that we didn't get another neupogen shot. That was last Sunday and I continue to feel fine... even with a little houshold drama going on, which I'll get to later.
The question you are now asking is why? My red blood cells, platelets, were all fine, so why this singular dip in WBCs? There are ideas, but there is nothing definitive. I continue to feel fine. Energy is good, even as I work through what has turned out to be very busy period at work. Some prevailing theories: long-term use of Bactrim causing this rare-ish side effect (so we paused taking it for bit); or my favorite, the new mutation I picked up is causing a transient drop in white blood cells, something that has been seen before in other transplantees (although I don't know if that's one transplant recipient or many); or my least favorite, it's just some random insult to your immune system, which if we weren't drawing blood, we wouldn't even have noticed.
Whatever the culprit, it'll be interesting to see what the lab results are this Wedneday, and hope to have a continued rebound in my WBCs so I can continue to fend off diseases... like Covid.
Because Covid is still a thing, y'all. Matt came back from a Labor Day weekend away with his friends and was sick from the moment his masked little face came into our house. He stayed mask on everywhere in the house and isolated to his room (and bathroom), which is good because he tested positive for Covid on Thursday and Stacy followed yesterday. The latter fact is crazy because she has been and was so very careful, but she was bringing him food and retrieving it, and they shared the same bathroom. I've fortunately had my own bathroom since coming home from transplant, so I'm thinking that helped. We're not out of the woods yet, but as they are feeling a bit better and able to fend for themselves, we thought isolating in a hotel for 4-5 days might be a safe option.
And safe options are what we want as we approach the six month post transplant date, which is officially next Saturday, the 16th. All this is a stark reminder of vulnerable I am, and how I have to remain very vigilant, particularly until my immune system grows up a bit.
