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! (Or maybe not, seems touchy.) (Click the "read more" link below to see it... maybe.)
So my ANC has started to bounce back the last few days, 0 to 40 to 30 to 80 to 90 and then 160 today, and so I'll probably be going home sometime in the next few days, maybe Wednesday Thursday or Friday (not likely tomorrow).
I had an infection last week, my temperature briefly spiked to about 102, so they put me on antibiotics and started taking blood cultures to look for bacteria — usually when they've done that for past fevers they never find anything, in this case they found two species of bacteria, one associated with the guts and the other associated with the skin. I had bit my lip kinda bad a few days earlier, and possibly burned a little bit of my lip and tongue on some hot dinner, so it's possible that was part of it. But my PICC (the catheter that goes in my arm to deliver the chemotherapy drugs more directly into my blood stream, near my heart), started feeling sore so they pulled it out and figured it might have developed an infection, which is where the skin species of bacteria might have come from. It also developed a clot, superficial, but for a while kind of uncomfortable. They're not really worried about it being a problem, I guess pumonary embolisms tend to be clots in your legs that dislodge and travel to your lungs, often causing serious problems. Being in my arm, and not being so bad as to actually block blood flow out of my arm, are good signs it shouldn't be as troublesome. But as a result I'll have to stay on an anticoagulant until my body naturally destroys the clot with enzymes. (To prevent the clot from getting bigger as my platelets return.) So I'm not real excited about that.
The other thing I'm a bit bummed about is they're saying I'll have to stay on IV antibiotics for a few more days, till Monday, so they'll probably want to put another PICC in me to deliver the antibiotics, instead of the perhiphial IV they're using now. I'm still trying to convince them if the IV is still working when I leave that should be enough, but we'll see. The IV nurse who put it in took some extra steps to make it better, like using an ultrasound to find a bigger vein, and putting a special dressing on it to help kill bacteria, like they normally would with a PICC. And the nurses have been keeping me on a slow drip of saline to keep the vein open. Still, the doctor didn't seem very open to the idea.
I'm not sure about the longer term plans. This morning the doctor said they'd probably have me come in for one more outpatient biopsy to make sure I'm clean before going to Boston for the transplant process. Which made me a little nervous that with all the time in between I could get stuck in this perpetual state of needing re-induction chemotherapies, which cause complications, which delay the transplant, which gives more time for the leukemia cells to return — but I'm pretty sure that's just fear getting the best of me. It must be pretty obvious to them the importance of getting to the transplant as soon as possible.
In any case, I'm anxious to get it started, I don't want it to be delayed any more.
So most of the last week I felt pretty immobilized, the last few days I've started to come out of that, eating solid food again (I was avoiding it for a while, it was irritating my tongue and lip too much). Now that I'm feeling more normal again I'm trying to get going with programming again, to explore some cellular automata type approaches to drawing, and if I can figure that out maybe I'll start pursuing the variations to minesweeper I had been contemplating for the last couple years. If only for my own entertainment.
I'm feeling pretty burnt out about politics — I wish I didn't feel so obligated to be vocally political, but if Hillary loses I'll blame myself for not doing more early on. And it would be so great to see a Supreme Court dominated by justices that value reality over ancient superstitions (Scalia believed the devil exists and was trying to actively discourage people from belief in his god). It'd be nice to see them stand up for voting rights, for the right to abortion, and gay rights, healthcare, firearms, campaign finance, and on and on... My whole life it's been a sharply divided court, mostly along the party lines of the presidents who appointed them. With Scalia dead, Ruth Bader Ginsburg 82, and two more justices aged 78 and 79, it seems possible the next president will appoint as many as four new justices. It'd be depressing to see them be the expression of the same tired old ideas that should have been dead and buried last century.
Anyway, rant over.
I thought about titling this post “biopsy negative!” but decided that could be misinterpreted, and “biopsy positive” could definitely send the wrong message, so I went with the primitive sounding “biopsy good”.
So this morning the doctors came in to tell me they didn't find any signs of the leukemia in my bone marrow, so I'm back in remission. Now it's a matter of waiting likely another 11-21 days (could be shorter, or longer), for my immune system to regrow enough to fight off infection on it's own. Then, assuming I'm in good health (which seems likely right now, I walked three miles last night without difficulty), then I'll head to Boston to begin the transplant process. I guess there's a chance I could get a fever, as I did in the past, before my immune system is mature again, in which case that would delay things a bit, but once I'm strong and healthy we'll try the transplant.
I'm nervous about the transplant process, there's a lot of uncertainty, but in my favor are my age and health, and this is the best shot at curing me, or at least prolonging my life for a good while, so I'm also anxious to begin — the sooner it starts the sooner I'll be able to work on recovering and finding out if it worked or not. And also the less likely the leukemia cells will regrow into a problem again.
I guess I could mention too, I'm at the stage where the later chemotherapy effects are starting to happen, my hair is just beginning to fall out, and my sense of taste seems to be changing again, though it's hard to explain exactly how. In both cases they seem like relatively harmless effects, I've been lucky that my digestive tract has remained pretty healthy, and my mouth too. Sores in the mouth are a common symptom and so far I haven't really had that, though a couple days ago my platelets were very low and I apparently accidentally bit my cheek while eating a cookie, and a blood blister formed right away. But I got a platelet transfusion the next morning and I'm not much of a bleeding risk again for now, and the blood blister is going away quickly.
Chris, the Creative Visual Artist for the Norris Cotton Cancer center, (where I've been treated all this time — which just reminded me, someone asked for my address and I forgot who...), asked me to share some of my photography for an artshow later in October, so I need to write up an artists' statement and get a couple pictures printed, and framed, to be hung. That'll be fun. And after I post this I'm going to go back to fiddling around with some programming ideas, see if I can get back into the programmer mindset.
Thanks for reading!
So I haven't updated in a while, sorry about that.
Two weeks ago, on Friday the 17th, I measured a fever taking my temperature before bed — I wanted to go to bed so bad, it was 1 in the morning and I had been up at 730 for doctors appointments, things were mostly okay but I kept needing blood transfusions, I had had one that Friday, along with both blood and plasma transfusions both previous Thursdays and that previous Monday. So I had been up pretty early (for me) for a few days, and really wanted to go to bed, but I measured my temperature multiple times and mostly got above 100.4 F, which is where they want me to call and go to the emergency room, in case I have an infection. (Because without an immune system an infection could grow out of control quickly, and without many white blood cells I probably won't even show many signs of infection, no inflammation really.)
So they put me on really strong antibiotics for a while, my fever went away after a few days, but they wanted to keep me until my ANC had returned to at least 400. On Sunday I calculated it to be 504, so they sent me home. I tried plotting all the measurements I could find for how my ANC had changed over previous weeks and treatments, and this one fit pretty well in those ones. Though some of the antibiotics I was on most of the week, I think they said they can actually have a supressive effect on my immune system, so we were kinda tugging in both directions.
Anyway, I'm all better now. Out of the hospital. Platelets went from like 27 to 50 in the last couple days at the hospital, so I'm not worried about bleeding, but my hemoglobin was still pretty low and I can definitely feel myself getting easily winded by just a little moderate exercise. Because I was in the hospital all week I had to move my appointment in Boston, where I'll start to get to know the doctor doing the transplant. So I'll meet her this Friday instead. Which meant I also pushed back a bunch of appointments for this Friday in Lebanon to next Friday. Last time (two Fridays ago) I met with a doctor I didn't know well, who thought we might do a third round of consolidation chemotherapy in a few weeks. I wasn't expecting that but the previous two rounds have been fairly easy, to I'm not too concerned about it. Apparently the chemotherapy for the bone marrow transplant is more severe, and is more likely to be another month in the hospital, so I'm trying to mentally prepare for that I think.
Now I'm working on another toy I started designing a few years ago, one that will need a few test prints I think, which is what held me up before.
So I had a checkup today, platelets and hemoglobin were pretty low (14 and 8.3 respectively) so they gave me transfusions for each of them. My ANC was low, 740, but not neutropenic, so probably I'm still on the way down, and gonna bottom out some time in the next several days. I'll be avoiding public for a while, again, which is all expected.
I made a tips & tricks page a while back, because I know I've learned a lot over the years about what works best in certain situations, and it would help if I could share that with other people. I should probably try to streamline that page as much as possible, and then incorporate it into some kind of help/tutorial/introduction to the app. So any feedback on that page would be greatly appreciated!
I haven't worked on zeeify lately, and am going to shift it to spectrify, which will take a series of photos and use a cheap method of edge detection and then use the same kind of colorization schemes trippygram uses — mostly because this will all be easier to do and I'm curious what the results will look like. Plus if I'm going to colorize them, it won't matter so much that I've used a cheaper method to cut out the sharp stuff.
And all that should keep me plenty occuppied for a while. I was thinking recently I should apply to be a substitute teacher, but I feel like I need to wait until my health situation is more stable, maybe after the transplant process, if that all goes well, maybe as I recover I'll be able to do something like substitute teaching. Guess I'll wait and see!
So I'm back home again, second round of “consolidation” is over. Things are still going well, the week was pretty uneventful — it all feels somewhat routine at this point. I walked a pretty good amount most days. We're taking more precautions to hopefully avoid nosebleeds this time. I'll have some followup appointments over the next few weeks to monitor my blood count numbers, and then sometime in the next few weeks I guess I'll start meeting with doctors in Boston to get to know them, and the process for a partial match bone marrow donation. I'm nervous about the fact that they couldn't find a complete match, but there isn't really anything to do about it.
I wrote all the above yesterday — today too was rather uneventful. This morning my hemoglobin, platelets, and ANC were all low but well above need for transfusion or wearing a mask everywhere. Last time it seemed to happen pretty late, and stay down for a bit longer than expected.
So I'm back to learning about frameworks, bridging headers, and other programming concepts I need to understand to improve my software — and it's good to get back into it.
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.