So after the long weekend, on Tuesday, I'll be re-admitted for another round of consolidation chemotherapy, for probably five or six days. Typically they do two rounds of consolidation and then a transplant, which involves another month in the hospital. They haven't found a great match, so at the moment it looks like they'll try a partial match, in which case they won't do it at Dartmouth Hitchcock in Lebanon, but somewhere in Boston, I guess probably Mass General hospital.
The risks are greater with a partial match, but it's still successful for some people, and because of the specific cause in my case there is a high likelihood of relapse without a tranpslant, so the potential benefit of a transplant is enormous and symmetrical to the risk of no transplant. I don't know a whole lot about the transplant process yet, and I may be repeating myself some here, but the basic idea is that my bone marrow has a mutation (inversion on chromosome 3), which caused it to produce white blood cells that didn't mature. Normally the bone marrow produces white blood cells that mature into different kinds of cells that do different things, in my case the cells aren't maturing and the young undifferentiated cells began to crowd out the mature white blood cells and the red blood cells that carry oxygen. So we kill off all the immature cells with the chemotherapy and then take someone else's bone marrow, and ideally, it grows into my bones and produces healthy blood cells.
The search is for Human Leukocite Antigen (HLA) matching, which is the fancy technical term for the proteins on the outside of cells that the immune system uses to identify which cells are part of the body, and which are foreign invaders. The better the match, the less of a likelihood that the donated immune system attacks the rest of my body as foreign, which is known as graft-vs-host disease (GVHD). It's similar to other organ donation concerns, except normally they're concerned that the recipient's immune system will attack the donor organ, in this case the donation is the immune system itself, so the concern is more about it attacking everything else. The other major concern seems to be that the donated immune system takes hold in my bones. Apparently having some symptoms of GVHD is actually reassuring because it indicates that the donated immune system is in fact doing it's job, and it could even potentially target any remaining blast cells (cancerous immature immune cells).
The difficulty in finding a good match is because they're hoping to match ten antigens (ideally, based on research about which donations have been most successful), two known as HLA-A, two as -B, two as -C, two as -DRB1, and two as HLA-DQ. The criteria seem to grow more specific as we collect more information about the genome and which transplants are more successful, so I think they used to look for six markers, then eight, now ten. To better understand the odds, I looked up HLA markers on wikipedia, and found there are 2,884 HLA-A alleles, 3,589 HLA-B alleles, and 2,375 HLA-C alleles; there are 1,540 HLA-DRB1 alleles, and theoretically maybe 34,528 possible combinations of HLA-DQ type alleles. (Alleles are variations of a given gene.)
A very simplistic (and inaccurate) estimate of the relevant variability here would be to simply multiply all these numbers together, but in reality not all these combinations are likely to occur, I'm sure there are strong correlations for certain sets of alleles across markers, but it's still helpful to get an idea of why matching is so difficult. It's interesting that there is such tremendous genetic variation in this case because our ancestors seem to have gone through some genetic bottlenecks in the past that reduced our variation in a lot of ways. But there seems to be evidence that humans actually seek out genetic variability in mate selection — there is an obvious benefit to increased genetic diversity in offspring, that's the whole reason sexual reproduction exists, and in retrospect it's not surprising that that benefit would be compounded for immune systems. In other words, the reason we have such great diversity in our immune systems is probably that we're actively seeking mates to maximize the diversity — for the last 150,000 years we've probably been actively maximizing the diversity of our immune systems. (This was all a digression I inserted after writing the next part, and I only mention that because I don't feel like editing together something better than the non-sequitar below.)
I'm feeling pretty close to normal, a bit weaker than I used to be, and I still get a little light headed at times, when transitioning from crouched down to standing up, but I'm mostly feeling pretty much like I used to.
I went to a beach in Maine on Thursday with Justine, which was fun. I had weird feelings about being in public, I guess because of how my immune system was still a little weak, which makes me feel a little cautious about being around lots of people. Last night I went to a baseball game and felt a little more comfortable about that problem. It's weird feeling normal but also knowing that a minor infectious disease could be life-threatening. I also put sunscreen all over the top of my head, which was a new experience for me.
I haven't really made any progress on zeeify lately, stuck on a bug, but I'm beginning to think I should just not worry about the final quality of the image at the moment and look into making another fun color-driven app. Maybe that should be spectrify. I dunno. But it's good to be working on something.
That's all for now!
So I was not re-admitted on Monday, because while my numbers are coming back up, they haven't returned to normal levels yet, so the doctors thought it was better to delay it another week, at least. My next appointment is Tuesday (because of the holiday Monday), and they'll just be looking for my blood counts to be in normal ranges.
My ANC was above 1000, platelets were at least 67, and hemoglobin was like 8.7 or something, so I'm not too concerned about bleeding or getting sick, but still get winded pretty easily with too much physical exertion.
In the meantime I've returned to programming zeeify, but I can't seem to get the image pyramid to reconstruct the original image correctly.
I had an appointment to get my blood checked yesterday, and I didn't need any transfusions, which was nice. I made some good progress on the puzzle in the waiting room. I go back Thursday, and then have it done up in Lebanon next Monday, which if everything is doing well I'll get re-admitted for another week and do this all over again! I'm feeling okay, kinda tired still, but by the amount expected for my hemoglobin I suppose.
My ANC, the sort of first line of defense white blood cells was 0.17, on Thusday it was 0.01, and on Wednesday I had zero detectable white blood cells so the ANC wasn't even measured. Normal is 1.4-7.7, I don't know exactly what would be enough to be re-admitted Wednesday but it seems like theres a good chance I will be.
Other than that I guess I should be drinking more water.
So I had appointments Wednesday and Thursday, Wednesday my white blood cell count was 0 — neutrophils are a type of white blood cell, so they were 0 as well. Thursday they were 0.01, so maybe they're starting to bounce back, my next check is on Monday so I'm staying in this weekend and wearing a mask when I have to be in public. I had another blood transfusion on Thursday but my platelets (28) were still well above the transfusion threshold (20), so that was reassuring. A doctor told me usually it bottoms out in days 10-14, but I was on day 16 Wednesday, and that wasn't surprising because the first couple rounds of chemotherapy had really done a number on my immune system. So I've been unconcerned about it.
Getting prescriptions transferred and refilled has been a lot more annoying than I would have otherwise expected, but I think I have it all straightened out finally.
Longer term my next appointment with the doctors is Monday the 23rd, and if my numbers look good they'll admit me for another round of consolidation chemotherapy — so I get to look forward to repeating all this again in the next few weeks. After that I guess we'll be looking at how to get someone else's immune cells into me, but so far the donor search hasn't found any 10 of 10 matches. If they can't find any match I guess they'll do a partial match, which carries a greater risk that the donated immune system could mistake me for a foreign invader and attack me. I haven't asked what we do if that happens, I guess I'll ask as we get closer to that.
In other news I'm working on a toy idea inspired by curved crease origami, and just ordered a sample of a flexible material to see how much the idea might work out, so I'm kind of excited about that.
Apologies for anyone who's been counting on this for updates, since I haven't updated in the last four days. My counts started dropping but weren't low enough to need a transfusion last Thursday morning, but by Thursday evening they dropped further, and I had a nosebleed that I couldn't seem to stop, so we went to the emergency room of our local hospital and they transferred me up to Lebanon, where I've been getting treated this whole time.
That was a very unpleasant experience, for a lot of different reasons, but I'm through it now and feeling much better.
Today I had another checkup and my counts have continued dropping, my ANC has basically bottomed out, and my hemoglobin and platelets were low enough that I needed transfusions, which ended up taking all day. The good news about that is that after a platelet transfusion I feel less concerned that a nosebleed might be unstoppable (cause I really want to avoid experiencing that again if possible).
Wednesday I go back to Lebanon for another checkup, and then Thursday I have another appointment to check my blood and get transfusions if needed, but I assume that'll depend on how Wednesday goes.
They also stuck a “rhino rocket” in my nostril, and aren't going to remove it until Wednesday, so I'm really looking forward to that, though I'm a little worried it'll start bleeding again when they take it out, but at least it'd be out I guess. I'll just have to wait and see how it goes I guess.
But at the moment I'm feeling alright again, a little easily winded, since my hemoglobin is still really low, but not too bad.
Thanks for following along!
So it's been a few days since I've updated — as has been the routine lately, this post is about my health.
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