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.

Not a Bill

Today, I almost thought I got my bill for my hospital stay over two months ago. It turns out that it's not a bill though, and just a statement of what I'm being charged. After about a 90% reduction thanks to insurance, I'm left with exactly $2561.28 in expenses.

I'm not going to lie; it is a lot of money. Fortunately, I've always made sure that I kept some money in savings, so I will be able to afford it. It's just... after 9 years of college and grad school, I've only managed to save up about $7000, and now over a third of that might go to this one expense. I say "might" because I probably won't actually have to pay that much. The statement (which is "not a bill") came with an insert that says the following:

University of Maryland Medical Center meets or exceeds the legal requirements by providing financial assistance to those individuals in households below 200% of the federal poverty level and reduced cost-care up to 400% of the federal poverty level.

I'm 100% certain that I'm under 500% of the poverty level, since that's what's necessary to get Gleevec for free from Novartis. Thanks again for that, by the way, Novartis. I'm pretty certain that I'm under 400% as well. If I'm not under 200%, I'm not much higher than it. Such is the life of a grad student. I guess, though, that I should be grateful for what I have rather than regretful of what I don't. Besides, I can't complain, because I think that in the end my education will be worth far more than what I've had to pay for it, even if you factor in costs such as missed opportunities. As much as I complain, my education is really going to be worth something when I finally get out of here.

Speaking of my education, our Sigcomm plans are starting to come together. I'm pretty sure we'll have a decent submission. I almost regret my paper last year about a distributed, privacy-preserving online social network called Persona; while I certainly don't regret winning Best Student Paper, it's almost impossible to follow-up on the paper because it solves so much! Every time we think we have a problem, we realize that Persona solves it almost trivially... almost so much that we couldn't possibly get an entire paper out of it. It's a little frustrating because I feel that there's a bit less to do in the area of privacy in social networks, but that's most likely going to be my thesis topic so I need to come up with something. Our current idea feels a little weak, but that's probably only because I've always set my bar too high. I just get tired of reading papers that design a system exactly as you'd expect if you were to just sit down with the problem for a few minutes.

In other Carmichael news, I've been having some trouble socially. Some of the people involved either do read this blog, might read this blog, or have a reputation that I wouldn't want to tarnish with my minor annoyances. My problems are two-fold. First, I'm supposed to drink in moderation, so even if I'm out having fun I only have one or two drinks, not enough to even really get me buzzed. Ordinarily I wouldn't really care, since I don't really enjoy drinking that much. However, I really don't like being out with a bunch of people who are drinking without me, because I think the social dynamic gets thrown totally off-kilter. Plus, since I don't really drive anywhere, I'm not even able to be the designated driver, so I can't even do some good by being sober. I'll just say thanks, Bender, for driving on Saturday, and leave it at that.

My second problem is that, as much as I would like to, I can't forget about Carmichael. It's bad enough that my alarm goes off at noon every day reminding me to take my pill and that I almost have a side effect of some sort (currently it's back muscle aches, joint pain in my legs and feet, and occasional numbness in my right big toe). Tangent: I wonder if I can deal with side effects better if I think of them more like status effects in an RPG? Anyway, the thing that really gets to me is that someone who shall remain nameless is having an even harder time with Carmichael than I am. That, and I can often tell that when he looks at me. That, and when he's drunk, his inner monologue becomes an outer monologue.

And now, before I finish off this post, I figured everyone might want to see how my Mo is doing! Enjoy the pictures.

And don't forget to check out my Movember page if you want to donate some money for the fight against testicular and prostate cancer!

Work Frustration

I think my delight at having my spleen shrink has worn off. I was pretty depressed yesterday, so depressed that I left work early. The only task I had to work on yesterday was to make some slides for HotNets, and I just couldn't make myself work on it. I'm sure that everyone has their off days at work, but this was not the only such instance for me.

In fact, I feel like it's been going on for a long time. I really feel that over the past 4+ years in grad school I've become dumber, lazier, more distracted, and more frustrated when it comes to my work. This might surprise some people, since I've actually been very successful in the past two years; see my publication record on my web site, though it's missing my latest IMC paper and the fact that Persona won the best student paper award. However, I find myself working twice as hard to do half as much.

Until now, I just blamed this feeling on the aging process. Now I have no choice but to question if Carmichael has been to blame for some of it. Have I not been getting enough oxygen to my brain? Or do I just want something to blame on my own failures? This inability to tease out what the effects of Carmichael are and what are "normal" changes to my body is incredibly frustrating. Which of these changes can I prevent, and which are inevitable?

These are the thoughts that went through my head as I walked home. It really weighs on me, because I've always prided myself on a job well done, and without that, what do I have? I'm really worried about Sigcomm this year; heck, I'm worried about finishing this presentation in time for Syschat on Wednesday. In the end, I suppose the only thing I can do is to try my best, as tacky as that sounds...