One step forward and two steps back

Well, no one said a stem cell transplant would be easy.  For a long while, I was tolerating the effects of graft-versus-host disease, an important part of the healing process because it comes along with the graft-versus-tumor effect that will guarantee that my cancer does not return.  A recent bone marrow biopsy revealed no cancer in my stem cells, and a very small amount in my blood stream (which is apparently OK, and what the graft-versus-tumor effect is taking care of).

Unfortunately, I finally got to the point where my graft-versus-host disease was no longer tolerable.  I had between stage 2 and stage 3 GVHD of the GI tract, and it got to the point where I couldn't keep anything down; I was vomiting nonstop and had unstoppable diarrhea.  So, I was readmitted to the hospital and put on a ton of steroids and immunosuppressants just as I was when I was initially treated for the stem cell transplant.  So in some sense, I feel like I'm back to square one.  But at least I have hair now!

Still, despite being back on as many --- actually more --- meds as I was back then, I am actually feeling a lot better than I had been recently, so that's good.  The only problem right now is that my hospital stay has once again left my muscles fairly atrophied.  I'm slowly building my strength back, though.  I'm able to get around the apartment pretty well at this point, though I still need to use my arms to stand up from sitting down.  Getting up and down the three flights of stairs to my apartment is still pretty tricky.

In terms of keeping my spirits up, I made a very good purchase recently: a Nook from Barnes & Noble. I absolutely love it.  I wish I had it during my recent hospital stay, but at least I'll have it for the next one.  It is incredibly comfortable to read books on it.  It feels like it was designed for my hands specifically. I suspect I will get a lot of use out of this thing; I've already read four of the Dresden Files books on it.

Additionally, I got a recipe book.  I've been having quite a bit of fun with it, and I've made a few really good dishes.  I also misinterpreted something that resulted in a glassy explosion.  It nearly traumatized me, but Ted helped me clear it up and calm down.  Hopefully I learned something and won't make the same mistake again.  The Nook isn't great as a cookbook since it takes some work to get to the recipe you want, so I might need to get a hard copy. At the same time I'd prefer to just develop an intuition and a mental repository of recipes, maybe even just compiling my own little recipe book from the recipes that are a success.  So far, my big successes have been jambalaya and something I'm going to call a lemon catfish pocket.  I'm fine with making scrambled eggs and bacon, though I had some difficulty with pancakes.  My home fries weren't quite right, but they were still tasty and I think I can fix them with some work.  In short, as per doctor's orders I've been cooking every single thing I've eaten for the past week, and it's been a lot of rewarding work.  And I've been eating a lot; the steroids make me ravenous.

So that's a basic rundown of my current status.  I haven't even been thinking about work, but I'm hoping I'll be able to start back up on Tuesday this coming week.  I really need to find a way to get back in to programming, research, and graduate school.  It's remarkably difficult to get back into the swing of things when you've been on such a long hiatus; not only is my confidence shaken, but I'm not sure where to even begin working again.  I guess all I can do is my best.

In and Out

It's been a little while since I've written, because I've been too busy enjoying life outside of the hospital. My chances of surviving the bone marrow transplant are good -- we think 70% -- but it's not a sure thing, so I've decided that I should just enjoy myself with the time I have until the transplant. And I have been enjoying it, just being at home with Ted, relaxing, watching TV, playing games.

In terms of my health, though, things could be a bit better. I knew when I got out of the hospital last Wednesday that my immune system was very weak, so I tried to be careful. I wear a mask when out in public. I sanitize my hands constantly. It turns out that germs are really hard to avoid, and our bodies do a really good job of fighting them!

That brings us to this past Wednesday. I went in for my infusion for the day, and told them that my throat was a little sore, so they prescribed some antibiotics. Later that night, I had chills. I called the cancer center, and they told me to take my temperature. It was 101.9 F at that point, though three hours earlier it had been 98.3 F. I clearly had an infection, and no way to fight it, so Ted and I left immediately for the hospital.

Ted doesn't like driving; in fact, neither do I. Since we don't have a car, we were fortunate that some of our friends were out of town and that we were borrowing theirs. Ted overcame his reluctance to drive to take me up to the hospital, and we made it there without any problems. By the time we were there, though, I was really out of it.

Things happened pretty fast. They covered me with a heated blanket, and gave me some antibiotics. My fever was pretty high at some point; they weren't constantly taking my temperature, but I could feel it. At some point during the night things must have turned around, because I woke up without a fever the next morning. In fact, I felt pretty good that morning, though I got worse as the day went on. But the important thing was that I was safe.

Over the next few days I learned that it was either a bacterial or fungal pneumonia and they were treating both types just to be sure. I had a CT scan of my chest done, which showed some nodules that made them think it was probably fungal, but I hadn't been given any antifungal medication before I started to feel better. In the end, we're not exactly sure what it was, but the important thing is that it has been treated. During my stay I had some problems with low blood pressure early on, but that went away as they infused me with blood and saline. They also took the opportunity while I was there to do another bone marrow biopsy, which hurt a bit more than the first one though only briefly; I'm not sure what Dr. Rapoport is looking for from the biopsy, but he'll have the results when I see him on Thursday and hopefully it will give us more information at least. Then finally last night, Friday night, I was discharged.

Between my new medicine and the medicine they gave me on Wednesday, I ended up having to shell out more than $500 for prescriptions. Two medications in particular were more than $200: moxifloxacin and ciprofloxacin, both antibiotics.  All told, I now have twelve pill bottles which contain eight drugs. I still take seven of those, the only exception being a temporary stop on dasatinib, a.k.a. Sprycel, for reasons I'll explain in a bit. That leaves me on the following seven medications: acyclovir (antiviral), allopurinol (prevents gout), amoxicillin (antibiotic), moxifloxacin (antibiotic), ciprofloxacin (antibiotic), pantoprazole (prophylactic gastro-intestinal something or other), and voriconazole (antifungal).

It's really this last drug that interests me so much: voriconazole. If you look it up on Wikipedia, you'd see that as a side effect it can cause "visual disturbances" that occur within half an hour of taking it and last for about 30 minutes. My nurses said that I might notice some changes in my perception of color. I only started taking the voriconazole on Thursday, and I didn't notice anything too odd while I was in the hospital. When my mom was driving me home, everything looked way too yellow; in fact, when I got to the apartment I was kind of weirded out by the fact that my blue apartment door looked green. My TV at home looked really strange, like each individual pixel was shimmering. I figured this was pretty standard hallucination stuff.

Then I went to bed last night, and had quite a bit of trouble falling asleep. I would see things even with my eyes closed, but they were most vivid when I stared at the plain white ceiling. It was really a lot like when you stare at something that's red for a long time, and then look at something white and see the after-image of the same thing in green. Only now, I just had a constant supply of changing after-images.

I could snap myself out of it temporarily, but it would start back up again, and it always started in the same place. It started with words, thousands of words, some moving left and some moving right at about the same speed, of varying sizes and transparency. Every time I tried to read them, but it was almost impossible, like chasing an after-image when the original image wasn't in the center of your vision. I picked up a few words here and there. I remember I saw "time" multiple times. I don't remember the other words, but they were all unremarkable. As I would try to focus on the words to try to read them, the image would gradually change, as if I were zooming out to see that the words were just some part of some larger geometric pattern.  Then came a bunch of psychedelic colors and scenes a la 2001, but not quite as vivid; again, more like what the after-image of the trip in 2001 would look like if you could view it in real time. Then my vision would return to normal for a second, as if to tell me that the show was about to start. And start it did.

It felt like I was dreaming, but I was awake.  It was almost like the end of a dream, when you're just about to wake up, and your consciousness recognizes the dream but wants to give it a conclusion. You still believe in the dream, but you're aware of what's happening and you can steer the dream to the point of fantasy. It was almost like that in the sense that I had both consciousness and vivid perception, but I certainly was not in control of the things it showed me. And it showed me many things, some fantastical and some mundane, but all of them in amazing detail. I remember an old black man sitting with two of his friends, smiling in contentment. I remember a phoenix flying away from a group of anime adventurers who were protecting themselves with a magical barrier. I remember an old photograph with two men and a woman in it. I remember seeing a young boy throw a magical frisbee into the sky as his entire village looked on in awe, only to chase it up a mountain and discover a golem at the top. And these are just the ones I remember off the top of my head.

Honestly, it's no wonder that a lot of artists turn to hallucinogens for inspiration, because what I saw last night was amazing and beautiful.  It was a fantastic experience, which is why I'm doing my best to share it with any readers out there. But ultimately it is just fantasy. Now that the hallucinations are gone, I'm back to wondering about my health and what long term effects, physical and mental, these drugs will have. Right now, I feel mostly healthy and mostly sane, so I'm going to count that in the win column.

I am concerned about one thing, though. My blood counts are low, and they don't seem to be recovering like they should. I don't really know what this means, but I do know that it's probably a bad sign when the doctors don't know what's going on. This is why I've been told to stop taking the dasatinib. I suspect the bone marrow biopsy will shed more light on this particular problem, and I'm not sure that this problem even affects the bone marrow transplant at all, so until I know more we'll just have to wait and see. If all goes according to plan, the bone marrow transplant will happen on or around February 10th.

Prayer

I'm usually pretty lax about who I allow to be my friend on Facebook, and usually I'll just hide someone if their posts annoy me. Today I learned that it is possible to push me far enough to remove a "friend".

My sister-in-law, Anna, just got out of bible study. You know how I can tell? I just got a flood of messages on Facebook from people I barely know. Ordinarily I'm pretty good at putting up with religious folk; I know that religion is important to the rest of my family, so I try not to complain too much. One person in particular, who shall remain nameless, I've known for several years, from back when I tried to go to my brothers' church to try to understand their perspective better. Tonight she sent me a message on Facebook about something called "Gerson Therapy", an alternative to modern medicine in the fight against cancer. That pushed me over the edge, and I deleted all of these people who only I barely know and who obviously don't know me at all.

It's one thing to believe in God. I understand that. The existence of God can't be proven or disproven, and I can see how the thought of a better life after this one would be comforting to many people. On the other hand, I consider logic to be irrefutable, and I think the only way that you can truly believe in anything resembling the Christian God is to just totally throw all notion of logic out the window; you must be willing to accept contradictions if you believe in such a God. That is the root of the problem, and that is what really bothers me. When you reject logic, you're free to reject sound scientific reason, such as the theory of evolution or in this unnamed person's case, modern medicine.

I know that right about now, I am incredibly thankful for modern medicine, and am ecstatic that people devote their lives to developing new and better drugs. If I had met Carmichael ten years ago, I would probably be dead by now, because Gleevec is such a new discovery. When you think of things that way, the speed with which scientific discoveries are made is literally a life and death issue for some people. This person's rejection of science is the ultimate insult to me.

That being said, I can tolerate most religious people, but they do tend to annoy me. I can't tell you how many people told me that they were praying for me while I was in the hospital, but I can assure you that I found the number to be far too high. Prayer is absolutely meaningless to me, and these people know that I'm an atheist, so why do they say such things? I know it makes them feel better, but shouldn't I be the one that they comfort? Oh well. I guess I can handle the aggravation if it helps them feel better.

The biggest issue here was that I knew my family would want me to reconsider my beliefs in my new situation. Oddly enough, I expected it more from my brothers and sister-in-law, but they haven't said anything. It was my Mom and Dad who each tried to persuade me, independently. My Mom tried to apply Pascal's Wager; believing in God had to be better than not believing in God. After trying very hard to convince her of the flaws in that argument --- 1) that you could apply the same argument for other gods, 2) that ascribing infinite value to an afterlife and finite value to our earthly existence is an incorrect valuation for many people, and 3) that believing in God in such a selfish way is unlikely to work even in the event that everything people believe of heaven is real --- she was eventually satisfied when I finally convinced her that the notion of death being final and absolute was actually comforting to me because it makes sense. Apparently, she was more concerned that I was depressed than she was for my soul.

I think it's difficult for religious people to grasp that atheists aren't really afraid of death, and I'm not sure why. It's not like we believe that there's the possibility for an eternity of torture after we die. Death is inevitable; it's really just a matter of when it comes for you and what legacy you can leave behind.