Another few weeks have passed, mostly without anything significant happening, except they asked me to go in for another blood count like a week ago and my white blood cell count had dropped pretty dramatically, down below 500, meaning I was neutropenic again. I found it concerning and so did the doctors, so they did another bone marrow biopsy on Wednesday, and on Friday told me they weren’t seeing signs of the leukemia (which was sort of the only possibility I really thought about it; seemed likely it had grown back and was crowding out healthy cells again). It’s weird reading back through all that, it seems like it was going much slower. If it had been the leukemia returning, I would have done another round of induction chemotherapy and then they would have moved me into the transplant process right afterwards.

So it was good it wasn’t the leukemia, though it still isn’t clear what is going on. The doctor said it could be a virus or other infection, and when my body overcomes it the ANC would bounce back, so they’re going to track me for a couple weeks and do another bone marrow biopsy if I don’t get better in that time. By Wednesday my ANC had dropped further, so I’m back to taking an antibotic and antifungal, and avoiding public, and crowds, and kids. In some ways it didn’t concern me much because it seems like wiping out my immune system entirely is the next step anyway, and this would sort of be a head start. 

They started scheduling appointments for a transplant in Boston, but that’ll probably be pushed back some dependingo on whether I return to normal soon or not. My red blood cell count ticked up slightly, so that’s also good news. But it’s still really low, and I get light headed a lot standing up. 

So I think it’ll be an uneventful Labor Day Weekend for me. But so far it’s been really nice out. And Stefan and Justine both visited which was nice. 

I started playing with twisty puzzles again, a few my cousin Kirsten sent me that I did solve but tend to mess up while soving a lot of the time. Or can’t reliably solve particular problems on them. I’m actually messing something up right now where I can’t quite solve it. And normally I figure these things out on a normal Rubik’s cube, which I have somewhere still, but seemed to have misplaced. Which is mostly annoying because there aren’t really a whole lot of places to look. Seems like I should have seen it by now.

Anyway, the transplant process is still moving forward, I should know in another week or two when exactly. I’ll try to keep this a bit more up to date as things are happening, if I can.

So without even realizing it I neglected to post for almost an entire month!

The third round of consolidation went well, much like the second round — I walked a lot, I felt okay.

But a few weeks afterwards, around my immune system’s nadir, I woke up with a fever, which put me back in the hospital for eight days or so. I also passed out twice, once the morning I had the fever and once the morning before that. I knew my hemoglobin was really low and I should have gone to get a transfusion, but it didn’t seem like that big a deal at the time. Luckily all that worked out fine, but it was a miserable time in the hospital, I had fevers most of the time I was there, which made them reluctant to give me a blood transfusion, since if my temperature went up a degree during a blood transfusion they’d have to stop and write it up as a potential reaction, even though it would probably just be due to the fevers I was already having. So that first night they would pack ice under my armpits and behind my head to keep my temperature down. My hemoglobin was really low for a while, as low as 5.6, which I think is far lower than it has ever been before. (Normally in the hospital they would give me a transfusion when it was below 7.)

All ended more than a week ago. Then I got to spend a day with Allison & her family that Friday, which was really nice. 

Sometime in the last month I had another appointment in Boston with the doctor and team of people who are going to do the transplant. The plan right now is to have one more appointment to go over everything in late August, and aim for the transplant process to start early in September. It’ll probably be about a month in the hospital, I’ll get another dose of chemotherapy drugs that is more intense, like the first two treatements, with the intention of destroying my immune system completely. Then they’ll take bone marrow or possibly just stem cells from the bone marrow of a donor, and give them to me much like a blood transfusion, through a vein. Then ideally the donated cells will embed themselves in my bone marrow and begin to grow as my own immune system. 

One of the bigger concerns is that the donated immune system might see me as a foreign invader, and attack me, which is called graft-vs-host-disease (GvHD). So they’ll be watching my skin, lungs, and liver, for signs that the new immune system is attacking those organs. This will be a risk for the rest of my life, but I think it is immediately afterward that will most likely be the biggest risk. From what I’ve read and watched videos of people who’ve gone through this, a little bit of GvHD is actually a good thing, as it indicates the new immune system is growing and functioning, and there is even a graft-vs-tumor-effect, where the new immune system actually sees my old immune system, in particular the cancerous immature blast cells, as invaders, and actively seeks them out and kills them. If I do have problems with it, they may treat me with steroids, though I don’t actually understand the mechanism there. The doctor also mentioned that there has been some recent success with partial match donations being treated with some chemotherapy after receiving the donation, which is counterintuitive, as that is when you would expect the donated immune system to be most vulnerable, but apparently it can help with the process. (Whenever I hear “graft-vs-host-disease” I think of David Cross’s character Tobias in the show Arrest Development, and how he developed GvHD because of his hair plugs, so they threw a fundraiser for him and then everyone revolted when they found out it was just his hair plugs causing the problem.)

Beyond that the other major concern is probably infection, so they want me to brush my teeth four times a day, which I’m not used to but am sort of looking forward to I think. I’ve always had a poor opinion of my teeth — it seems like I’ve had cavities virtually every dentist visit of my life, and I’ve gone pretty regularly every six months for years. But one thing I’ve had a problem with for years is my habit of brushing in the morning, which for me didn’t develop as something I do in the morning, but as something I do before I leave the house. So on the many days where I don’t leave the house (especially as someone who worked from home before quitting and working for myself, (or trying to at least)), there are a lot of times where I brush either very late in the day, or just once before bed. But I have flossed regularly for most of my life, and used a rinse for most of my adult life. A lot of that has fallen apart during these long hospital stays. I wasn’t allowed a tooth brush for much of my stays (they worry about bleeding with low platelets). So I think that’s why I’m kind of looking forward to scheduled brushing four times a day.

After that first month they’ll still keep a close eye on me, I think for at least the first 100 days. After that it’ll sort of be the next five years of checking to see if anything grows back, if nothing shows up that would imply I’ve been cured, I think, is the idea. I know with some cancers it’s never really clear whether you’ve been cured, there’s always a risk of even a lone cancerous cell you missed growing back to overwhelm things again given enough time. 

I read an article a while back about research into giraffe evolution, which involved some gene sequencing to match it’s closest living relatives, and then comparing the two genomes to find out what evolutionary changes occurred to make giraffes unique, and one of the interesting discoveries were genes that helped the heart be able to pump blood all the way up the neck, I think. And then the article ended by mentioning how because elephants are bigger than most animals, it was thought their rates of cancer would be higher because they have more cells in their body each with the same potential to go haywire. But they don’t, and now it’s thought they have some genetic mechanisms to help avoid cancer, and since giraffes are also very large, they expect giraffes to have similar adaptations. I found all that interesting, I had never considered it before. It made me wonder about whales too. And recently I saw a lot of headlines about research that shows a kind of shark that lives for several centuries, one headline said it doesn’t reach sexual maturity until it is 150? But I didn’t read any of the articles about it.

I think there are muscles or clams or something that live several (~4?) centuries, and are able to reproduce well into their second or third century. I think the next few centuries of human technological advancement will see us figure out how to incorporate many of those benefits into our medicine, and likely take complete control over our health, to a degree we can’t really imagine yet, in much the same way people from a few centuries ago could hardly imagine the things we’re able to do right now. Only the changs ahead are probably much bigger, because we’re beginning to understand how we work on a fundamental level now. Though I’m skeptical of claims that we’ll improve our lifespans dramatically. I’m sure we’ll do that eventually, but in the foreseeable future it seems like the problems caused by aging will remain.

But I digress.

For now I’m just enjoying the summer weather and trying to advance the projects I find interesting. Also I need to hurry up and sell my car! And renew my drivers license! I bought a shiny copper plated colander to wear while getting my photo retaken, but I’m nervous about wearing it, I’m not really one to cause a scene typically.

Anyway, my cousins have mentioned a few times now that my comments seem to be broken, so they can’t leave messages. I need to figure that out too!