My updates have been infrequent lately, I suppose because I don’t think there has been much to report.
I had a folllowup appointment yesterday, my platelets and ANC have recovered well, which is nice, but my hemoglobin remains low, which just means I tire easy, and get a little dizzy when I first stand up, or take too many deep breaths in a row.
On Friday, July 1st, I met with the transplant doctor and her team, in Boston, to begin learning about the entire transplant process. She figured it’d begin in about six weeks, after they’ve checked me out thoroughly and decided I’m ready. I need to get a dentist appointment to make sure my mouth is in good shape before we begin. And they don’t really like going more than I think she said 8 weeks between consolidation chemotherapies and the transplant process, so I’ll be back at Dartmouth Hitchcock next week, probably Thursday, maybe Wednesday, for another round of consolidation. Mostly the consolidation chemotherapies have been pretty tolerable, though the complications afterwards — the nosebleed the first time and the fever the second time — resulted in a lot of unpleasant experiences. It feels like each one is teaching me to be more cautious about some aspect following the chemotherapy. After the nosebleed we took some extra precautions to keep my nose clean and less likely to bleed, now I’m going to take further precautions in the weeks my ANC bottoms out, make sure to wear a mask anytime I’m in public and so on.
The transplant process is going to be much longer, and tougher, than what I’ve been doing for consolidation. The chemotherapy will be much more potent, as it’s intention won’t just be to keep my immune cells somewhat suppressed, but to actual wipe the immune cells out more completely, in preparation for a donor immune system to take hold. Typically this process requires three or four weeks of hospitalization, after they wipe out the immune system, receiving the donor immune system is basically like a blood transfusion. Then hopefully it grows into my bone marrow, and begins to provide me with a new immune system. There is some concern about the new donated immune system attacking me as if I were a foreign invader, that’s called graft-vs-host-disease, or GvHD, it’s similar to the kinds of rejection they worry about with organ transplants, only in that case it is the recipient’s immune system attacking the donated organ, in my case it’d be the donated organ attacking other stuff. The main targets tend to be the skin, the lungs, and the liver, and the doctors will provide some treatments if I show signs of those problems. I saw a video a while back on bethematch.org where people who’ve gone through this said it’s actually good to have some minor symptoms of GvHD, because it means the donated immune system is working and taking hold, and there is even an effect called graft-versus-tumor, where the new immune system attacks the old one and helps kill off any remaining cancerous blast cells. There is about a 10-15% chance that the process kills me, and about a 50-60% chance that it cures me. I didn’t ask, but I think that remaining 25-40% chance that I survive the donation process but the leukemia returns, at that point we start discussing other treatment options, I suspect probably clinical trials because I think this is the only real standard way to treat aggressive leukemias at the moment.
So that’s where my adventures in health are at the moment. Mostly a high degree of uncertainty, some unpleasant future stuff, but I’m glad to be born at a time when we know at least somewhat how to deal with this problem, and not decades or centuries ago when it would have just killled me right away.
Other than that I’ve been skipping around between projects, trying to focus on some experimental camera app idea. I got a lot of photos of the Fourth of July fireworks with my app trippygram, which I’ve been sharing on Instagram. I also made a snowflake gallery, though it’s terribly mismanaged, I need to delete about a hundred photos probably. At least the ones that are very similar to one another. I got tired of sorting through them trying to decide which was better.