I'm writing this because it's a lot of nuance to tell everyone individually. To summarize, a few weeks ago my blood counts started to drop so they did a biopsy last Tuesday and today I got the results: it looks like I still have some leukemia cells. There are a variety of possible treatments they're looking at (they choose depending on the details of what is happening). The rest of this is a more detailed explanation of those points.
(Also the original title of this post was "less than ideal news" until I realized I used that same title last year when I relapsed. So this post is more blunt instead.)
My appointments were cut back to monthly in mid-August. The September appointment went fine, but in the first week of October my counts had declined, and my doctor was concerned. So the next week they did a bone marrow biopsy, and today he told me the preliminary results, which is that I have myelodyplastic syndrome, which is a fancy way of saying that my body isn't producing blood cells in the right amounts, which is probably because there are still leukemia cells floating around. (MDS and leukemia are not identical, I think there are a variety of causes of MDS, but since I had leukemia a year ago that's the obvious conclusion. Sometimes MDS become leukemia later. Also, I already knew about MDS a little because I know Carl Sagan had it. Turns out he died of pneumonia, but I think it was probably as a complication. Huh, he had three bone marrow transplants from his sister. The two things I have going that he didn't are, I'm almost 30 years younger than he was, and there has been an extra 20 years of learning in the medical community. In spite of those, we still haven't gotten that good at this.)
As a little review, the cells in our bone marrow produce our blood, red blood cells that carry oxygen, white blood cells that fight infection, and all sorts of other stuff, like platelets, which form clots when we're bleeding. Leukemia is the result of one of those bone marrow cells dividing out of control, instead of maturing into an adult blood cell. The immature cells are called blasts, and I think typically you don't really see any blast cells in the "peripheral blood" (the blood in your veins). To diagnose leukemia they do a bone marrow biopsy, they use a needle to get a sample of my bone marrow (from the bones in my lower back, which are easy to get to, cause I'm boney), and then they count up the blast cells.
A leukemia diagnoses is when 20% or more of the cells in the bone marrow sample are blasts (normally they expect 5% or less to be blast cells). My biopsy last week had about 6% blasts, so it's not exactly considered a relapse, and that's why it's considered MDS. (When I was diagnosed last year it was 100% blasts, and at that point they were circulating through my peripheral blood too, so a hematologist that I still have never met knew when he saw it that I had leukemia, and he called me and told me I needed to go to a big hospital right away. After the first chemotherapy I still had 5% blasts, which is why they did a second "induction" chemotherapy.)
So what will we do about it?
To start we'll try and induce some graft-vs-host-disease. Since the transplant last November, the main concern (besides the leukemia coming back), was that the new donor cells I received could attack me as if I were a foreign invader (this is what HLA typing is for; my donor was a half match). So until today I've been taking some immunosuppressant drugs, which slow down the white blood cells and make them less likely to attack me. The upside is that sometimes they see a graft-vs-tumor effect, where the new donor cells attack any remaining leukemia cells as invaders. That's the plan right now.
Next week we'll see if that's helping, and they'll probably do another biopsy in a few weeks. There are a lot of other options, but which we pursue might depend on how things go in the near future. There are some new drugs that might help, some new chemotherapy drugs, and some that might help induce graft-vs-host (and hopefully also graft-vs-tumor). Another possibility is that they might collect some adult T cells from my donor (a cousin on my dad's side). It'd be a small amount, because they can be quite dangerous to me, and once they put them in they can't take them back out.
That's pretty much all we discussed.
I mentioned how the results were preliminary, the other part is called cytogenetic analysis, which involves sequencing the genome (probably just part of it), in the leukemia cells, to see which mutations they might have. Some mutations are known to be vulnerable to certain drugs, so if any such mutations are identified they will likely dictate how we respond. They cytogenetics should be complete sometime over the next week or so.
Short digression, I'm watching a David Attenborough BBC show about predators, and the first episode just ended with cheetahs, following a mother with four cubs, and they mentioned that 90% of cheetah cubs don't survive to their second birthday.
The original cytogenetic analysis from last year found an inversion on chromosome three, which is associated with a poor prognosis, and not long ago I read on quora how leukemias are among the fastest cancers, which is both good and bad. Good because chemotherapy drugs are specifically chemicals that interfere with cell division (since that's what cancers are), and by dividing so rapidly they're more vulnerable to chemicals that are really good at killing young cells. The downside is that because they divide so rapidly, they also develop resistance quickly. When I relapsed last summer they used a different chemotherapy drug, because whatever cells survived the previous treatments were most likely to have some mutation that made them resistant to the previous chemotherapy drugs.
That's pretty much all I have to say about my health situation.
The second episode of that show (I think it's called Hunt?), I think he just said polar bears are only successful in 1 out of every 20 hunts. A failure rate of 95%!
So in light of this (my health), I'm focusing my work and time on things I enjoy, and which I think are achievable. Which has meant more curved-crease origami, and less programming. (Because a lot of my programming projects I'm unsure will ever pan out.) Spending time with friends. I should probably order a bunch of 3D models printed.
Okay, now a polar bear is climbing around an incredibly steep cliffs, eating bird eggs & hatchlings. First I was really worried for the bear, he's so high up, and it's ridiculously steep and crumbly. But then I'm watching him just slowly eating every egg and bird he can get near, and the birds are helplessly squawking at him, inches away as he eats their babies. I think there is something I find comforting about being reminded of how nature works. No matter how much time I have left, it's really unlikely I'll be eaten alive, or starve to death, which is what most animals deal with every day for their entire lives.
I've always loved nature programs. Though even as a little kid I remember feeling really bad seeing animals get caught. I'm not sure when it occurred to me that the animals chasing them had to eat too.
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 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.
So I was released on Wednesday, the 19th, and have been home the last two days. My ANC was 320 Wednesday morning, which was really discouraging, since it had been 400 the day before and they had told me if it remained at 400 I could go home. So I spent a few hours thinking I'd be stuck there at least a few more days. But then later in the day they told me that they don't think anything weird is happening, my numbers are just kind of bouncing around a bit, which is fairly typical, and since I've been through all this repeatedly they trust me to look for signs of infection and seek medical help if I have any complications. And since I was just waiting around to recover, I might as well do that in the comfort of my own home. So I got to go home! They wanted to give me a blood transfusion before leaving, cause my hemoglobin was like 7 something, and outside the hospital they want it to be at least 8, so they did a transfusion and then another blood count and it was really good news, my ANC had gone up to 370, my hemoglobin was 9 I think(?) and my platelets had ticked up a little bit from the morning as well.
They did a bone marrow biopsy on Monday, but it was kind of too early, there were blast cells, which could potentially be leukemia cells, but they may also just be normal healthy cells that haven't matured yet. So they'll want to perform another biopsy sometime soon, this week probably, and if that looks good I should be all ready to start the transplant process at MGH. On Monday I'll go in for a more routine checkup to make sure the numbers are looking good, and then my hope is, if all that checks out, we can go into the transplant process as soon as is possible. I'm nervous about it, but I'm more nervous that any waiting is giving the leukemia cells more time to regrow.
Someone contacted me about reworking the octopus to be smaller. I've wanted to redesign a lot of things about it for a long time, so I might actually try to do that finally. It has me digging through old project files trying to decide how to go about it. I had also begun a cuttlefish model not long ago, so I might just start with that instead. I think I should learn about rigging the model up this time, so I can more easily rearrange the legs in the future.
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've been back in the hospital for two weeks now, I finished the last dose of chemotherapy a week before last Friday, and have been waiting for my numbers to drop and rebound. Right now my ANC (immune system cells) are practically zero, white blood cell count is at 0.1; hemoglobin and platelets have dropped and I've had some transfusions, a couple red blood transfusions and a platelet transfusion.
I've been walking a lot, usually a two or three miles a day, often without supervision, which is nice, because I haven't had issues passing out in months, and have been feeling pretty good.
Because today was day 14 since beginning the “re-induction”, they did another bone marrow biopsy. When I came in this time my doctor told me how the first time they did a bone marrow biopsy back in February, my marrow was 100% leukemia cells, and after that first induction it was down to 5%, and after the first re-induction it was clean, which is considered remission. This time the bone marrow was 5% leukemia cells, and we used a different pair of chemotherapy drugs, because it is assumed that the leukemia cells which survived the previous drugs are most likely ones that have adaptations that protect them from the previous drugs. So I'm not worrying much about whether this one worked or not, though I didn't really ask the doctor about odds specficially, so I guess I'm a little uncertain in that sense.
Assuming the biopsy they did today is clear, and I'm again in remission, the plan will be for me to wait here until my ANC recovers, and then probably head straight to Boston to begin the transplant process. If I'm weak they might send me home to regain strength first, but I think I'm pretty well in that respect, probably mostly due to the daily walking. I feel quite well, though I think my hair is beginning to fall out again, which is expected, and my taste may be getting weird, which may be an indication of my tastebuds dying off, which is also expected, and also tended to happen with each of the consolidation chemotherapies.
Meanwhile my app broke when Apple updated their operating system to iOS 10 recently, so I scrambled to update it, and today it got approved and updated in the App Store, which is a relief. It also served as a refresher course in programming, which is good because I have some ideas I want to explore, to get more comfortable with what I'm doing. So I'm excited about that.
Other than that I've got a lot of waiting and time to kill. I'll update again when I know something about the results of the biopsy!
So I was re-admitted to the hospital on Monday for another round of induction chemotherapy, it consisted of two new (to me) drugs, each administered once a day for five days, so last night was my last dose of each. Now I'll be hanging around for the next three weeks, waiting for my counts to drop down and then rebound, after which I'll head to Boston for the transplant process.
So far it's been pretty easy going, I've been walking a lot, which is both good for my health, and allows me to avoid painful shots in the stomach that they give to most patients to help avoid clots from forming in the calves. Today they disconnected me entirely so I can walk around without pushing the pole of fluids with me, which is nice too. It could be a little rough over the next two weeks, I'll probably need some transfusions as my blood and platelets die off temporarily, though it shouldn't really be anything I haven't already seen in the past.
I have a lot to work on, and plenty of distractions. I should make more of an effort to try out some things, and I also have to delete photos to make room on my computer and my phone. That's all for now!
So somewhat bad news, they called me back yesterday because the cytogenetic analysis of my bone marrow indicates the leukemia is still there, so Monday I'll be readmitted at Dartmouth Hitchcock for another round of induction chemotherpy — it'll be a lot like the first two rounds I went through, but not the exact same since whenever something survives one treatment they try to come at it from a different angle. I don't know the details exactly but my guess is it'll be about a week, and after that they'll try to go right into the transplant process, so I'll be moved down to Mass General.
It's scary, which I'm sure is natural. Though I feel somewhat prepared, since the original cytogenetic analysis indicated it was likely to come back anyway, and also because I figure the next step was to knock out my immune system entirely to prepare it for the donated immune cells, so it seems like another round of induction fits in well with the planned process anyway. That's just speculation though, I'll ask the doctor Monday and get a better idea of what I'm facing, and try to keep this up to date.
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!