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 fast 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.
Haven't updated since... May 25th‽ Lots has happened, my appoints went from weekly, to every other week, to monthly (next week will be my second monthly appointment). I think my next bone marrow biopsy is around a year, so mid to late November. I've had a few therapeutic phlebotomies (bleedings) so far, but I'll probably need to continue them for a bit over a year.
Went to Wyoming (flew to Chicago with Collin, where we met Corey, and we drove to Wyoming!) to see the solar eclipse in August. All I wanted for my birthday was for the Sun to block out the Moon for about two minutes, and I got it!
Also, we watched the eclipse on a hilltop in Wyoming, on a lake shore, with about 10 other people, I think maybe all of them were from Colorado. Jenny was one of them, she left a comment on my main page, and then I did something that messed up the comment section on the main page, and I haven't figured out how to fix it yet.
I spent a lot of time trying to motion stabilize the footage of the eclipse, with mixed results. I shot it in 4K with a Sony A7S ii and a 150-600mm Sigma lens (with a Canon to Sony E-mount adapter) I rented from lensrentals.com. I used opencv to find circles, but that didn't quite work as well as I hoped. Then I used contour detection, with fairly good results. And then there is the issue of cropping. A month has already gone by since the eclipse, so I've set that aside and the video is here now.
And the plane crossing it, that was incredible! In the video, shortly after the eclipse starts, the screen goes black. I was watching the LCD when that happened, and my first thought was, "did the camera just die‽ how could it die right now‽" You can hear, I think Collin, saying how the plane is headed straight for it. I looked at the lens and saw that the breeze had blown the solar filter back in front of the camera, and I managed to flip it back off the lens just in time to get the plane crossing. Later Collin looked up flights for that area and we found two commercial flights that went directly over us during the eclipse, and in the video there are, I think, a couple times where you hear someone mention there are two planes. Collin once, and one of the other women later I think. She also says something about how the plane looks like it's steering to see the eclipse, and I think at the time both Collin and I thought she meant they had flown into the shadow, and we figured that was planned. But looking at the flight paths later, it looked as if one of the planes banked sharply to one side, then the other, and then back again, possibly to show the passengers? The result looks like a big bump in the flight path, which otherwise is headed north east to south west across the country.
I ended up buying the Sony I rented, and they're notorious good at shooting video in low light (the reason I rented it). The night before I returned the lens I decided to look for Andromeda, and I didn't know how easy it is to spot. The app I was using to look for it was so filled with stars I had trouble orienting it right, and decided to look at the Pleiades star cluster first, and I happened to catch a meteor on camera.
Recently I've been working on another variation of minesweeper again, and I just now learned a little tiny bit more of Swift, which is actually what prompted me to post. I figured if I write about what I learned I'd be more likely to remember it. It involves the concept of in-out parameters for functions. I had run into them in the past, but didn't understand what they were doing, but the examples I just read were clear.
I also started by trying to figure out what was meant by some code, a class named Array2D<T>, which it turns out is a generic type. Generic types (apparently) let you write code that will be more flexible than normal, like the way an array type can take integers, floats, strings, etc., as members, that's what makes them generic. The explanation of generic types involved in-out parameters, which if my understanding is right, are sort of like functions that will change the values of parameters. I think they're kind of like a shortcut of having a function return modified values and setting the variable you pass into the function equal to the returned value. To use an in-out parameter you must write inout after the parameter name in the function declaration, and when you call it you use an ampersand to denote the inout variable. Here's the documentation for in-out parameters. And here is the documentation for generic types. (Generic code I guess.)
I also revisited an idea I've had for a long time, and worked on quite a bit a few years ago, involving trying to generate point clouds from a video with a pull focus. I managed to get an iPhone app working that would perform a pull focus, and then wrote some opencv code to pull out the in-focus parts, but it does a terrible job. After the bad first attempts I remembered how years ago I read about a simple method for focus stacking (a related problem), that consisted of blurring the photo and subtracting the blurred result from the original. The idea being that the in-focus parts change the most during blurring, and the out-of-focus parts don't change much, so the result is mostly the parts that were in focus. But the results of that were pretty horrendous too. I also had the color off when I made the video below.
When I return to it again I'll try implementing something like the contrast-based approach to autofocusing. I suppose something I should keep in mind is that, ideally, each pixel will result in only one point, so I really want to look through the "column" of pixels (a single pixel over the duration of the video), and select the one with the highest contrast? That doesn't sound terrible...
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.
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 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.
My updates have been infrequent lately, I suppose because I don't think there has been much to report.
I had a folllowup appointment yesterday, my platelets and ANC have recovered well, which is nice, but my hemoglobin remains low, which just means I tire easy, and get a little dizzy when I first stand up, or take too many deep breaths in a row.
On Friday, July 1st, I met with the transplant doctor and her team, in Boston, to begin learning about the entire transplant process. She figured it'd begin in about six weeks, after they've checked me out thoroughly and decided I'm ready. I need to get a dentist appointment to make sure my mouth is in good shape before we begin. And they don't really like going more than I think she said 8 weeks between consolidation chemotherapies and the transplant process, so I'll be back at Dartmouth Hitchcock next week, probably Thursday, maybe Wednesday, for another round of consolidation. Mostly the consolidation chemotherapies have been pretty tolerable, though the complications afterwards — the nosebleed the first time and the fever the second time — resulted in a lot of unpleasant experiences. It feels like each one is teaching me to be more cautious about some aspect following the chemotherapy. After the nosebleed we took some extra precautions to keep my nose clean and less likely to bleed, now I'm going to take further precautions in the weeks my ANC bottoms out, make sure to wear a mask anytime I'm in public and so on.
The transplant process is going to be much longer, and tougher, than what I've been doing for consolidation. The chemotherapy will be much more potent, as it's intention won't just be to keep my immune cells somewhat suppressed, but to actual wipe the immune cells out more completely, in preparation for a donor immune system to take hold. Typically this process requires three or four weeks of hospitalization, after they wipe out the immune system, receiving the donor immune system is basically like a blood transfusion. Then hopefully it grows into my bone marrow, and begins to provide me with a new immune system. There is some concern about the new donated immune system attacking me as if I were a foreign invader, that's called graft-vs-host-disease, or GvHD, it's similar to the kinds of rejection they worry about with organ transplants, only in that case it is the recipient's immune system attacking the donated organ, in my case it'd be the donated organ attacking other stuff. The main targets tend to be the skin, the lungs, and the liver, and the doctors will provide some treatments if I show signs of those problems. I saw a video a while back on bethematch.org where people who've gone through this said it's actually good to have some minor symptoms of GvHD, because it means the donated immune system is working and taking hold, and there is even an effect called graft-versus-tumor, where the new immune system attacks the old one and helps kill off any remaining cancerous blast cells. There is about a 10-15% chance that the process kills me, and about a 50-60% chance that it cures me. I didn't ask, but I think that remaining 25-40% chance that I survive the donation process but the leukemia returns, at that point we start discussing other treatment options, I suspect probably clinical trials because I think this is the only real standard way to treat aggressive leukemias at the moment.
So that's where my adventures in health are at the moment. Mostly a high degree of uncertainty, some unpleasant future stuff, but I'm glad to be born at a time when we know at least somewhat how to deal with this problem, and not decades or centuries ago when it would have just killled me right away.
Other than that I've been skipping around between projects, trying to focus on some experimental camera app idea. I got a lot of photos of the Fourth of July fireworks with my app trippygram, which I've been sharing on Instagram. I also made a snowflake gallery, though it's terribly mismanaged, I need to delete about a hundred photos probably. At least the ones that are very similar to one another. I got tired of sorting through them trying to decide which was better.
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.
Another transfusion appointment went well today in Manchester — my hemoglobin was 7.6, platelets were 6, and my ANC was 20, so I had transfusions of the first two, and won't be going out in public much this week, if it can be avoided. I'll find out again, either Wednesday, Thursday, or Friday.
It has me wondering how much a platelet (or blood for that matter) boosts those measurements, since I think I was 16 for the platelets on last Thursday, when I had a transfusion last, but it still dropped to 6, just 4 days later. But we can only sample it so often — sampling before and after a transfusion seems wasteful and impractical. If I can remember I'll ask if the doctors know on Friday.
As far as work goes, I'm back to working on another old toy/jewelry design in Blender, this one based on hypocycloids. I got pretty far on it originally but it was never clear I could get it to stay aligned, and I wasn't looking forward to iteratively determining what was feasible, but since Collin has a 3D printer handy it seems more feasible to give it another try.
I got back home again last night, and am doing well. Feeling plenty strong still, though sometime this following week my blood counts (ANC, hemoglobin, white blood cells, and platelets), will probably fall pretty far, I might need a few tranfusions at points, but that should be fairly routine.
The chemotheraphy didn't seem all that bad, I've still got some itching, but my biggest complaint is probably that I need to use these eyedrops for the next day that leave a bad taste in my mouth. I lucked out and had a stuffy nose most of the week which actually prevented the bad taste.
In about four to six weeks (depending on how I recover I think), I'll do another one of these, and then hopefully be able to find a transplant match and move on to that step. One thing at a time though.
This hospital stay was so much easier, I'm sure in part because I knew I was going in in the first place, and I knew I was leaving, so I could prepare for the whole thing. I was labelled a fall risk again (because of my past history of passing out last time), but the doctor gave me an exemption and they let me walk alone all over the place, including outside the ward and the hospital, when accompanied by friends. That was nice, we ended up walking about 3 miles a day that way.
But obviously it's much nicer to be home, sleep in my own bed. No tubes in my arm.
I guess that's all for now.
Thanks for reading!
The eminent British philosopher Bertrand Russell used an analogy to illustrate the concept of the burden of proof and how it applies to religious claims, now often referred to as Russell's Teapot, (also known as the celestial teapot, and cosmic teapot).
Russell explains that if he were to claim that a china teapot were orbiting the Sun between Earth and Mars, and that this teapot is too small to be detected by our technology (as it would be), then the burden of proof would lie on him to provide evidence of the teapot, not on disbelievers to prove the absence of the teapot.
The meteoroids are generated algorithmically, and since they're 3D printed in stainless steel, each necklace can contain a perfectly unique set of meteoroids. In these photos the teapots were printed in stainless steel with a polished nickel finish, while the meteoroids are the basic stainless steel material.