It’s now been 142 days since the transplant on November 18th, looks like this is only the second time I’ve written about this since I came home in early December.
Around day 30 they did a chimerism test, to look at my white blood cells and see how many were from me and how many were from the donor, and it was good, indicating all donor. On day 102 they did a bone marrow biopsy and another chimerism test, and both had good results: no sign of leukemia cells, and again, all donor, no me.
So things have been going about as well as can be expected for all this. I’ve been gaining weight, though slowly, two steps forward one step back. They’ve been slowly reducing the amount of immunosuppressants I take and I should be off them completely in a few months, unless I get some of the more severe symptoms of graft-vs-host-disease. They also reduced my visits from weekly to every-other-weak recently, which is nice.
A few appointments ago the doctor told me I have very elevated levels of iron, maybe 10 times a normal amount, though he said it wasn’t cause for concern. He explained how our bodies hold onto iron pretty well because meat is difficult to get in nature, and with all the blood transfusions I had last year my body accumulated a lot of excess iron. So the solution apparently is to donate blood, except in my case they’ll have to throw the blood away, so it’s basically blood letting. So I immediately thought of that SNL sketch with Steve Martin as the medieval barber/doctor who uses bloodletting for everything — “Gilda, get the leeches!” (And according to that wikiepdia article this sketch was done a few times, which might explain why that quote I just used isn’t in the transcript I found. Or my memory might be wrong.)
So we haven’t started doing that yet but it’ll be once a month for a while until my iron is in a more normal range.
In general I’m feeling alright. I’ve been working on modeling jewelry again and am working to better organize how I share it here, I’m enjoying that a lot.
I’m trying to embed that SNL sketch below but it doesn’t seem to work, I can’t even get it to play when I go to the site, but here is a link if you’re interested. Or if you have Hulu apparently it’s on there too.
Edit: figures, now that I’m ready to post this the embedding seems to be working, thanks NBC!
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So I came home last Monday from the transplant process, the hospital stay wasn’t quite four weeks long. I think I went in on November 11th and left on December 5th.
So far things have been going about as well as can be expected, I’m still having some issues but that’s normal. The transplant process itself went fine, and the next 100 days will be careful watching for symptoms of graft vs. host disease, so I’ll have a couple appointments a week for a while, if things keep going well it’ll drop down to once a week.
I’m sort of quarantined a little bit, they want me to avoid crowds and school aged kids, but I can have visitors, they recommended keeping it to no more than 2-3 at a time.
My sense of taste is probably the worst symptom at the moment, it makes it pretty hard to eat. Oddly I can still smell food pretty well, but most of it tastes kind of bad. Sweet things are decent, but salt is very absent.
That’s about it for now. Just a lot of waiting and taking my time with things.