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!
So I'm back up at Dartmouth Hitchcock for a third round of consolidation chemotherapy. It started yesterday afternoon and if all goes to plan I should be heading home Monday evening after the last dose. The last two went well so I don't expect this to be too different, they let me walk a lot and that allows me avoid these painful shots in my stomach that they usually give daily to most patients to help prevent blood from pooling or clotting in the legs. The shot is usually painful, first with the pinch of the needle, and then with the stuff they inject, so the nurses don't like giving them either, so it's a win-win. Plus, walking is probably my best bet at keeping my health up for the next step, the bone marrow transplant, which is apparently going to be a much harsher and longer process than these consolidation chemotherapies (which really havent't been too bad, the complications in the weeks following have actually been worse, the nosebleed and the fever, but even they were relatively tolerable).
I got to see Allison a few times before coming back in, which was just great, hanging out with her really helped take my mind off things some. Not that I completely forgot whats going on and what lies ahead, but it stopped occupying my attention so much, which had started to happen for a while I think.
I forgot my phone cord so my phone is about to die, but I have my laptop and cord, so email or facebook are reasonable ways to contact me, or leaving a comment here (though my cousin said she couldn't? I haven't been able to figure out any problem with the commenting yet).
My plan was to go back to programming some, but without being able to test it on the phone it'll be hard to go to far. Stefan also left me with plenty of reading material, and I still have a book Jared lent me that I haven't finished, so I guess I should spend more time with paper and less time with liquid crystal displays.
Guess that about sums it up for now!
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 had a checkup today, platelets and hemoglobin were pretty low (14 and 8.3 respectively) so they gave me transfusions for each of them. My ANC was low, 740, but not neutropenic, so probably I'm still on the way down, and gonna bottom out some time in the next several days. I'll be avoiding public for a while, again, which is all expected.
I made a tips & tricks page a while back, because I know I've learned a lot over the years about what works best in certain situations, and it would help if I could share that with other people. I should probably try to streamline that page as much as possible, and then incorporate it into some kind of help/tutorial/introduction to the app. So any feedback on that page would be greatly appreciated!
I haven't worked on zeeify lately, and am going to shift it to spectrify, which will take a series of photos and use a cheap method of edge detection and then use the same kind of colorization schemes trippygram uses — mostly because this will all be easier to do and I'm curious what the results will look like. Plus if I'm going to colorize them, it won't matter so much that I've used a cheaper method to cut out the sharp stuff.
And all that should keep me plenty occuppied for a while. I was thinking recently I should apply to be a substitute teacher, but I feel like I need to wait until my health situation is more stable, maybe after the transplant process, if that all goes well, maybe as I recover I'll be able to do something like substitute teaching. Guess I'll wait and see!
So I'm back home again, second round of “consolidation” is over. Things are still going well, the week was pretty uneventful — it all feels somewhat routine at this point. I walked a pretty good amount most days. We're taking more precautions to hopefully avoid nosebleeds this time. I'll have some followup appointments over the next few weeks to monitor my blood count numbers, and then sometime in the next few weeks I guess I'll start meeting with doctors in Boston to get to know them, and the process for a partial match bone marrow donation. I'm nervous about the fact that they couldn't find a complete match, but there isn't really anything to do about it.
I wrote all the above yesterday — today too was rather uneventful. This morning my hemoglobin, platelets, and ANC were all low but well above need for transfusion or wearing a mask everywhere. Last time it seemed to happen pretty late, and stay down for a bit longer than expected.
So I'm back to learning about frameworks, bridging headers, and other programming concepts I need to understand to improve my software — and it's good to get back into it.
So I've been re-admitted, as planned, probably until Saturday evening. My platelet count was 70, which wasn't much higher than last week, and lower than the 100 they wanted for readmission, but they decided to wave it to get going on this round.
It's all very familiar. Seeing all the nurses and doctors I've met. Eyedrops that make my food taste bad, but protect my eyes from the chemotherapy drug. Going for walks to avoid getting a painful shot of Lovonox in my stomach. Hickuping coming and going periodically. Feels very routine at this point.
But this should be the last round of consolidation chemotherapy before they try a bone marrow transplant. They never found a good match, so they'll do a partial match transplant instead, which isn't done here at Dartmouth, but rather down in Boston, Mass General I think.
The first two doses have been administered, they each last three hours, with twelve hours between them, and then thirty hours between each pair of doses. So two down, six to go.
Other than that I'm not sure what to say. I was working more on some software again before coming back to the hospital, and plan on working on it more while I'm here.
So after the long weekend, on Tuesday, I'll be re-admitted for another round of consolidation chemotherapy, for probably five or six days. Typically they do two rounds of consolidation and then a transplant, which involves another month in the hospital. They haven't found a great match, so at the moment it looks like they'll try a partial match, in which case they won't do it at Dartmouth Hitchcock in Lebanon, but somewhere in Boston, I guess probably Mass General hospital.
The risks are greater with a partial match, but it's still successful for some people, and because of the specific cause in my case there is a high likelihood of relapse without a tranpslant, so the potential benefit of a transplant is enormous and symmetrical to the risk of no transplant. I don't know a whole lot about the transplant process yet, and I may be repeating myself some here, but the basic idea is that my bone marrow has a mutation (inversion on chromosome 3), which caused it to produce white blood cells that didn't mature. Normally the bone marrow produces white blood cells that mature into different kinds of cells that do different things, in my case the cells aren't maturing and the young undifferentiated cells began to crowd out the mature white blood cells and the red blood cells that carry oxygen. So we kill off all the immature cells with the chemotherapy and then take someone else's bone marrow, and ideally, it grows into my bones and produces healthy blood cells.
The search is for Human Leukocite Antigen (HLA) matching, which is the fancy technical term for the proteins on the outside of cells that the immune system uses to identify which cells are part of the body, and which are foreign invaders. The better the match, the less of a likelihood that the donated immune system attacks the rest of my body as foreign, which is known as graft-vs-host disease (GVHD). It's similar to other organ donation concerns, except normally they're concerned that the recipient's immune system will attack the donor organ, in this case the donation is the immune system itself, so the concern is more about it attacking everything else. The other major concern seems to be that the donated immune system takes hold in my bones. Apparently having some symptoms of GVHD is actually reassuring because it indicates that the donated immune system is in fact doing it's job, and it could even potentially target any remaining blast cells (cancerous immature immune cells).
The difficulty in finding a good match is because they're hoping to match ten antigens (ideally, based on research about which donations have been most successful), two known as HLA-A, two as -B, two as -C, two as -DRB1, and two as HLA-DQ. The criteria seem to grow more specific as we collect more information about the genome and which transplants are more successful, so I think they used to look for six markers, then eight, now ten. To better understand the odds, I looked up HLA markers on wikipedia, and found there are 2,884 HLA-A alleles, 3,589 HLA-B alleles, and 2,375 HLA-C alleles; there are 1,540 HLA-DRB1 alleles, and theoretically maybe 34,528 possible combinations of HLA-DQ type alleles. (Alleles are variations of a given gene.)
A very simplistic (and inaccurate) estimate of the relevant variability here would be to simply multiply all these numbers together, but in reality not all these combinations are likely to occur, I'm sure there are strong correlations for certain sets of alleles across markers, but it's still helpful to get an idea of why matching is so difficult. It's interesting that there is such tremendous genetic variation in this case because our ancestors seem to have gone through some genetic bottlenecks in the past that reduced our variation in a lot of ways. But there seems to be evidence that humans actually seek out genetic variability in mate selection — there is an obvious benefit to increased genetic diversity in offspring, that's the whole reason sexual reproduction exists, and in retrospect it's not surprising that that benefit would be compounded for immune systems. In other words, the reason we have such great diversity in our immune systems is probably that we're actively seeking mates to maximize the diversity — for the last 150,000 years we've probably been actively maximizing the diversity of our immune systems. (This was all a digression I inserted after writing the next part, and I only mention that because I don't feel like editing together something better than the non-sequitar below.)
I'm feeling pretty close to normal, a bit weaker than I used to be, and I still get a little light headed at times, when transitioning from crouched down to standing up, but I'm mostly feeling pretty much like I used to.
I went to a beach in Maine on Thursday with Justine, which was fun. I had weird feelings about being in public, I guess because of how my immune system was still a little weak, which makes me feel a little cautious about being around lots of people. Last night I went to a baseball game and felt a little more comfortable about that problem. It's weird feeling normal but also knowing that a minor infectious disease could be life-threatening. I also put sunscreen all over the top of my head, which was a new experience for me.
I haven't really made any progress on zeeify lately, stuck on a bug, but I'm beginning to think I should just not worry about the final quality of the image at the moment and look into making another fun color-driven app. Maybe that should be spectrify. I dunno. But it's good to be working on something.
That's all for now!