So I haven't written any updates in a quite a while again. Things have been going well. I had my first therapeutic phlebotomy (blood letting!) a couple weeks ago and it went fine, turns out they take about 500 mL, and they'll keep doing that monthly as long as I am healthy and iron levels remain high. The actual procedure only took maybe 10 minutes, but then there was some waiting before and after, mostly to make sure I felt okay.
They also made an appointment for me to get an IVIg (intravenous immunoglobulin) infusion in another few weeks. I guess immunoglobulin is the antibody our immune systems use to attack invaders, and it's pretty common for post-transplant patients to have low levels, so this is all still pretty routine.
They started giving me vaccinations too, which they had told me I would need eventually, around 6 months post transplant (which is about where I am).
Otherwise things seem to be proceeding about as well as can be expected. They've been reducing the immunosuppressants and I'm on pretty low levels now. I think I've had very minor signs of graft-vs-host, some rashes on the backs of my hands that come and go over the course of a few days. Last fall, before the transplant, I was watching videos and reading about the process, and many patients mentioned how some small signs of GvHD are encouraging because it means the new immune system is working, and there is even a graft-vs-tumor effect whereby the grafted immune system can attack any leukemia cells that remained.
The one minor weak point is that I still haven't gained any weight, but my appetite is pretty much back to normal, I just need to focus more on eating more constantly. Small meals still but more frequent.
Outside of health issues, I renewed my drivers license finally! And I've been working on modeling polyhedra of all sorts, and getting many more models printed. Right now I have some earrings and pendant designs being made, hopefully this iteration is nice enough that I can start making them for sale!
I also started working on a game involving hyperbolic geometry, but I quickly realized I didn't know enough of the geometry to make what I needed, so I have to go back and learn a lot more before I can return to that.
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.)
I think this started as a dodecahedron, then small stellated... this seems right though. Except maybe I should try to smooth out the remnants of the haircut.
So I've been thinking lately about some different ways to view the brain, and causality, and I think there is an unsettled question.
I recall reading about a study of London cab drivers that suggested the part of the brain that stores directions was proportionally bigger in the brains of cab drivers who had been working longer, and I think the natural conclusion was that like muscles being exercised becoming stronger and healthier, exercising the "directions" part of the brain made it bigger and stronger as well. Which would make a lot of sense. But there is an alternative explanation, which would be that some people are born with bigger "directions" parts of the brains, and those people naturally become more long-term cab drivers. This doesn't fit quite as well if there is correlation between the length of time they've been a cab driver and the size of that brain part, because you'd expect to find young cab drivers with varying sizes, and the ones with the biggest being the ones you'd expect to last the longest. I'm not sure what the research found, I should probably be looking it up.
The reason I bring this up is that this second view tends to be how we view mental illnesses, as problems with the brain that cannot be reversed through "exercise". I find this particularly concerning with diagnosing children with mental illnesses, as their brains are still developing and I think we don't yet know enough to safely say a developing brain truly has a problem (in most instances), or if its merely a stage in the maturing process. I watched a documentary on medicating children for mental illness a few years ago on Netflix and was astounded by the fact that some children were diagnosed as young as five, put on drugs that affected their brain chemistry, and believed they could never function without them. I'm not saying that maybe isn't true in some cases, but I think it would take some pretty hefty evidence to convince me.
I've also been thinking for quite a while now that if we truly understood mental illness, we'd be able to cure it reliably, which we cannot, and that's an indicator we don't yet understand the problem. PTSD for example is cured in some people, but it seems that most that suffer from it continue to suffer from it indefinitely, suggesting we don't really know how to cure it. As opposed to traditional illnesses like bacterial infections or bone fractures.
Anyway, I'm not necessarily siding with one view or the other, just noting that there are two competing views on how the brain works, and while I want to lean towards the one, I think we still need more evidence to really know which. I suppose there is the possibility that both are true to varying degrees, but teasing apart the strength of each one would still be ahead of us as well. I guess just keeping in mind the fact that "practice makes perfect" is well established, and remembering that our brains are plastic and nothing is set in stone, are good things to know when dealing with mental illnesses.
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.
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'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!