Pop Bone Marrow Biopsy

I got the results from my CT scan.  My GI tract has healed; I could have told you this because my bowel movements have been nice and solid recently.  Unfortunately, the CT scan also revealed that my spleen is growing again. This could be a sign that the leukemia is coming back, so the doctor decided to do yet another bone marrow biopsy. Unfortunately, the doctor either didn't care how or didn't know how to make the bone marrow biopsy as painless as possible; it really seemed like he wasn't even trying. It was hands down the most painful thing I've ever experienced, though gout still reigns supreme as being the most painful for the longest amount of time.

In any case, depending on the bone marrow biopsy, I'm not sure what's going to happen.  The doctor said that there's a chance they might remove my spleen.  Apparently the spleen acts as a sponge for blood cells, so my enlarged spleen is part of the explanation for why I've been needing platelets and white blood cells recently.  Removing the spleen would help with this, and I guess the liver will pick up the slack, according to the doctor.  Still, I hesitate when the doctor suggests removing an organ; it sounds like such a permanent solution to what could be a temporary problem.

Naturally, Mom and Dad are freaking out about this. What's worse, they're telling other people. They don't understand that it's not unusual for leukemia patients to have their spleens removed, so they think this is much more serious than it is, and they've convinced everyone else that that's the case too. That brings us to the party.  I got to see most of my family on Saturday at a huge pre-wedding party for my brother Bobby and his fiancé Hillary.  Everyone expressed that they were concerned for me and that they were praying for me.  Most of the family started out by saying that they heard that I got some bad news recently.  I had to repeat about twenty times that things were going well and that it really was just some routine tests.

And really, things are going very well.  I feel great.  I went in to work three of the five days this past week since I was at the hospital the other two days.  I got myself organized, including upgrading to Ubuntu 10.4 on my work, home, and laptop computers -- I have to say that I am quite pleased with it, though they need to fix some of the bugs with Gwibber.  I started working on my proposal document, and I have about 8 pages there so far, though a good chunk of that is basically lifted from the Persona paper and needs to be condensed.  All in all, I feel great, I'm being productive, and I'm happy.  I don't think I could ask for more than that.

Oh, and even better news: because my GI tract is good now and because there's the concern that the leukemia could be coming back, the doctor dropped my steroid dosage drastically and continuously.  I'm nearly off the steroids at this point, and today is the first day in a long time that I've actually eaten roughly like a normal person.  I'm still a little hungry, but for a change I don't feel that I need to eat.  As far as I'm concerned, that's victory.

Having trouble

Lately I've been having side effects.  Some are just physical, so they're not too bad. However, others are mental, and they're beginning to worry me.  I'll explain.

The physical side effects pretty much started on Sunday when, after a bit of dehydration caused by the disruption of Thanksgiving, I got gout again. It wasn't quite as bad as last time, but it was in the other foot.  I also didn't have any allopurinol, a problem I have since remedied, since it is supposed to help with the gout. I drank a lot of water to clear the gout up, perhaps too much at once, which nearly led me to throw up after taking my Gleevec with lunch. Fortunately I was also given nausea medicine, which helped me keep it down.

The gout naturally cleared up during my sleep, but the following day and today as well I was left with lingering joint pain in my left elbow, in the bottom of both of my knees, in my ankles, and of course my toes. Oddly, the hardest thing for me right now is to walk down stairs; it really hurts my right leg whenever I have to bend my foot too far.  I'm hoping it feels better soon, because I want to be able to get back to the gym.  This stuff always feels better after I work out.

Finally, on the physical side (though not really side effect related), last night was the end of Movember.  Before shaving, I tried to dye my mo a nice bright blue.  It almost worked, too, except I was a bit careless and it started to dye my skin, too.  Frantically I scrubbed it all off and immediately shaved my mo.  Unfortunately, I had to scrub really hard, and now have several torn pimples and what looks like rug burn on my chin.  At least the dye is gone.

So basically, these physical impediments are distracting, but manageable.  Right now, I am far more concerned with the mental effects.

I've been noticing them for a while actually --- pre-diagnosis, even, though things have gotten far worse since the diagnosis (which could be coincident with Gleevec, my changing attitude towards life, or any number of other factors). It's really hard to put my finger on what I'm feeling right now, but I will try.  I have to try.  I'll start from the beginning.

I was smart.  I was really smart.  I always tried to be humble about it, recognizing that it was just a coincidence that I had a better natural capacity for learning, reasoning, and problem solving than most. But really I enjoyed being smart, and it was the single biggest motivation for continuing my studies in grad school.  As long as I had this ability, it would be a waste not to use it in the pursuit of knowledge. That was my purpose in life. Admittedly, as an existentialist, the pursuit of knowledge didn't have any more intrinsic meaning than anything else, but it's what I chose to value above everything else.

After meandering for several years through grad school trying to catch up to everyone else who had already figured out how the research world works, it finally clicked with me about two years ago. Not long after that, I started to have significant success, culminating with Persona in Sigcomm this year. As much as I want to take credit for that, though, Bender deserves a lot of credit for that paper too, and really Bobby and Neil deserve the most. Without them, the paper would have been a mess.  It's hard to write coherently when your thoughts are a mess.

About a year and a half ago, I noticed my coherence slipping.  It was subtle though, for a very long time.  I was able to function, and I readily associated my deteriorating ability with the nature of research; when you don't exercise your knowledge, it's easy to forget it, and research is typically about a lot more than just programming.  During the summer, as I got closer and closer to needing to present Persona, I got very agitated and terrified, because I felt like a fraud.  I was hanging on by a thread, completely unsure of myself most of the time.  Fortunately, I do still have my lucid moments, and I think stress can trigger them, so I think that I was able to pull off the presentation fairly well. But in reality, something was wrong, and I knew it; I just didn't know what to do about it. I don't know if Neil would even remember this, or even if I made myself clear to him at the time, but I tried to confide in him how I'm feeling.  I don't think either of us could have predicted what was to come.

Now I know what has been wrong with me all this time, and I'm finally putting pieces together.  I don't know exactly what's wrong --- I mean, I don't know the mechanism by which this is happening --- but certain evidence has made my condition clear.  I will try to explain the signs I've observed, along with the possible causes I can identify, an what I intend to do about it.

Lately my research has consisted of three tasks.  The first is, well, research: reading existing work to understand the context in which I'm working and to understand the problems that have and haven't been solved already. The second is vision: identifying a problem and sketching a rough solution, which some would say is the hardest part of research, though I would say it's the easiest. The third is execution: actually nailing down the details of the solution, putting forth the effort to engineer everything and validating the solution.

Vision I can handle.  Thinking abstractly in broad terms is not actually that hard for me at the moment, I think because it's more about brainstorming and just coming up with ideas. On the other hand, researching related work and actually executing the details of a solution both require structure; to both understand and generate a technical solution, you need to closely follow the underlying reasoning to that solution, from one step to next, in a rigid order. It has become obvious to me that my capacity to do this is significantly diminished. It takes me an entire day --- sometimes longer --- to read a technical paper (although I was able to knock out The Gathering Storm fairly quickly, so light reading is still on the menu). Today really hit home, when I seriously tried to tackle a program for the first time since my diagnosis.  I can still do it, but it takes me a very long time to do even the simplest of tasks. I used to be able to keep the majority of a program in my head, to see the connections between variables, functions, structures, classes, etc., but now I can barely remember the variables in the scope of a single function once I look away from them.  I just don't know what to do.  My ability to do my job is slipping away.

There are a few ways to explain this.  The first is that I'm distracted.  My physical pain is sometimes hard to ignore, and those distractions can disrupt my thought process. Once my train of thought is derailed, it's easy to start surfing the Internet or do something else unproductive instead of focusing on what I'm doing. But I've noticed that my behavior when surfing the Internet is changing too!  I will check the same sites over and over, expecting new content even though I know there will be nothing there.  I will read the same news story 3 or 4 times, expecting there to be something new that I missed before.  I was not like this before, and I don't know why it's happening.

So, while I'd like to just chalk this up to distraction, I think that the distraction is just another side effect. Others claim that Gleevec can create a kind of fog, which I can attest to.  Some examples: I was certain I ordered a #6 at Roy Rogers the other day but Ted and my mom agreed with the cashier that I asked for a #2, I often completely miss something Ted says and require that he repeat it 3 or 4 times before it actually sticks with me (especially when playing a video game, which seems to be the one thing I can still focus on), and one day I was talking to Neil about Sigcomm, and I just completely lost myself in the middle of a sentence, having no idea what I said before or what I was going to say next.  It's been a real challenge, and when I get confused like that there's no covering it up.  I don't want my performance to suffer, but I don't think it's in my control anymore unfortunately.  I can only do my best, and my best may not be good enough anymore.

Mostly, I'd like to clarify what these people mean by a Gleevec "fog".  My thoughts used to have connections and structure.  I firmly believe that some of the connections in my brain behave like common computer science structures as a tree, or a graph, or a linked list, or a hash map; because of this structure it is easy to think logically, to follow arguments, and to see patterns.  One of the most insightful things my father has ever said was that it makes sense that I like computers because I think like one.  I don't even know if he realizes how much of a compliment that was in my mind; for all I know he might have meant it as an insult! Maybe I do still think like a computer, but right now I feel as if someone just randomly reassigned all of my pointers, and I'm getting segmentation faults everywhere.

So is it because of Gleevec?  Did my super-thick blood do permanent damage to my brain while I was stuffed to the brim with white blood cells?  I don't know.  I'm a scientist, but I'm not a doctor.  But what does it mean?

I always thought I would stay in research, probably in the realm of academia.  Now I'm just not so sure.  How can I go on to academia if I'll continue to suffer from this debilitating impairment to my thought process?  And if I don't go on to do more research, what more will I do?  It's what I'm best at, and I'm not really qualified for anything else that I would consider interesting or significant. And if I don't go into academia, it will be a huge disappointment, both to Bobby and to myself.  I just don't see it happening.  What can I do?  Something has to change.  Would I be content with just raising children while Ted worked?  Would Ted be content with that? Could I actually handle raising children, or would I be forgetful and neglectful with them, too?  I'm distracted with so many questions, and I just don't have the answers.

I'll just have to think about it some more.  Here's hoping I can.

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.