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.
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 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.
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.