It's 4 AM and I can't sleep. That means one of two things: either my medication is making me keep crazy hours, or my head is full of serious thoughts that only a blog post can dislodge. In this case, I think it's the latter.
I'm kind of in a rut right now. Ruts aren't entirely bad. A rut is stable, and that's something that can be welcome after an unpredictable cancer treatment. But obviously I wouldn't call it a rut if I weren't at least a little bit discontented. It's really the PhD thing that's causing these feelings. I'm ready to graduate. I should have graduated by now. It's going to happen in May, and it can't happen sooner, even if I were to work four times as hard as I'm working now. All of the pieces of a Rube Goldberg device are set up and in place, and I'm off watching videos of cats on the Internet while I wait for the thing to finish going off. I should feel more engaged in the process, and in my current work, but I don't. I just want to move on with my life.
I've continued to have success with my work despite my malaise and my health difficulties. I wanted to have a paper ready in time for NSDI, and I was pretty close to doing it, but I eventually decided that the stress of the deadline was bad for me and that it wasn't worth it to work myself into the ground when SIGCOMM, with a deadline several months later, was just as good of a fit for this work.
In fact, there are a lot of advantages to publishing in SIGCOMM instead of NSDI. It gives me time to polish the work to the extent that it deserves, a discipline that I think is often lost in the "publish or perish" pace of my field. NSDI is in San Jose, while SIGCOMM is in Helsinki. Helsinki just sounds better. Say it with me. "Helsinki." How could you not want to go there? Then there's the fact that I don't have to start moving on to a new project while starting my job search (I already have my first interview!). As far as I can tell, the only real advantage of NSDI over SIGCOMM is that, if the paper were to get rejected, I would have helpful feedback from the reviewers for resubmitting to SIGCOMM. But I have a simple solution to this: I'll just write a paper so good that no one can possibly reject it. I know, it's an elegant solution.
Did I mention that it's 4:30 AM? (Actually, now it's 5:30 AM - I had to come back to this point in the blog post to let you know that the next few paragraphs are going to ramble a bit, but that I promise I have a point at the end of it. And I think it's a good one. Stay tuned.)
Healthwise I'm kind of in a rut, too, finally. For the past few months things have been difficult though. Back in July or so, my GVHD got pretty bad, to the point where the rash had spread to most of my upper torso. Here's the thing about GVHD: it's an auto-immune response, so what you can directly observe happening to my skin is actually a pretty good measurement of what's happening to my internal organs. I don't know if you know this, but your immune system has hooks into every other system in your body: your muscular system, your skeletal system, your nervous system, your digestive system, your respiratory system, your reproductive system, and obviously your circulatory system. I'm sure I'm leaving some out, but those are the ones that come to mind, because those are the ones that I become acutely aware of when the GVHD gets bad, whether it's because they're causing me pain or just because I'm paranoid about what kind of permanent damage might be happening to them.
In any case, the fix is pretty straightforward. I've been around the block enough times now that I could probably have done the doctor's job for him this time (not to diminish his efforts, but his advice and recommendations have all been extremely predictable). I went on methylprednisolone, a steroid, at a fairly high dosage. It cleared up the GVHD in very little time, one or two days, as expected. But you don't just get to stop taking steroids; your body gets used to them and you have to gradually wean yourself off of them. And unfortunately there are a dozen side effects during that time.
Let's start with the mooboo, my pet name for all of the swelling, especially of my face, neck, and fingers. This is my least favorite side effect. You'd think that swelling wouldn't be so bad, since it's mostly cosmetic. But it turns out that cosmetic things matter to me. I find myself distracted in social situations, especially when meeting new people, because I can't help but be concerned with my appearance. When I look into the mirror, I see an ugly, twisted reflection of my self-perception: my bulging cheeks force my eyes and my mouth half-closed, simultaneously making me look half-asleep and unhappy, even when I'm not. What do other people see? Do they think I'm unhappy? Or not paying attention to them? Maybe I'm not paying attention to them, but it's because I'm too busy thinking about what they're thinking about me to just be a normal person. This is why I hate face-to-face social interaction. Give me text to hide behind, and I'll tell you anything. Really this is nothing new; I've been socially awkward like this for my entire life, but I haven't had quite as MUCH distracting me before.
Next is the eye bubbles. My eyes have been in terrible shape for the better part of a year, and there doesn't seem to be anything that the doctors can do. When I get enough sleep, it's better, and they'll last from about 9:00 to 3:00, which is most of a work day at least. After that, everything is so blurry that it becomes difficult to concentrate on anything complicated. This adds to my social interaction troubles, since I have trouble looking people in the eyes and find myself constantly wanting to just look at nothing. The blurrier things get, the less real they seem, and as a scientist I'm always struggling to get as firm a grasp on reality as I can manage. As for what's actually happening to my eyes, no one is quite sure and I'm waiting to see my ophthalmologist again. It looks like a filmy layer of tissue on the surface of the sclera near the conjunctiva. It's present on both eyes, and on particularly bad days it can really bubble out pretty far, to the point where it almost overlaps my lower eyelid. It's gross, and I want to get rid of it.
Then there are the gills, which I guess started even before I was on the steroids even though the doctors claim that they think they're caused by steroids. It's clear the doctors don't know what they are. They might just be stretch marks, and while it's true that I gained a lot of weight quickly at some point (because of the steroids inducing uncontrollable hunger), I don't think it was enough weight to account for these marks. It basically looks like my skin is ripping apart in a dozen places or so around my stomach, and under my armpits. The skin feels soft and thin, like it would tear easily, and when I put pressure on it the wrong way it elicits sharp pain. But overall, it's not my worst side effect by any means. It's not very distracting and it's mostly cosmetic and concealable, though I wonder what people at the gym must think. Maybe they think they're tattoos. I can almost trick myself into thinking that they look like a purple flame tattoo. Almost.
Then came the shambling legs, which were bad enough on their own merit and made worse by the fact that I had to travel quite a bit in August. The shambling legs were a combination of several things. First, all of the muscles in my body became incredibly weak, and my thigh muscles were hit worst of all. I literally could not stand up without using all four of my limbs. I had to use both hands on the rail in order to climb stairs, and I had to take a rest after each flight. I live on the third floor of my apartment building, so this was quite unpleasant. Getting from one terminal of an airport to another while carrying luggage was almost too much for me. If I did too much walking, I would have terrible leg cramps, at first only at night (ruining any chance of sleep I had that night) and then eventually even during the day. The worst was the one-hour flight where they never turned off the seatbelt sign and I had a cramp in my leg the entire trip. A normal person would have stood up anyway and tried to walk it off, but I'm nothing if not abnormal. And I was going to SIGCOMM. When you go to a conference, the whole point is to network socially, and that involves walking to bars and restaurants. I did my best, and everyone was accommodating, but it made me feel terrible.
Feeble, frail, fragile. Lots of f words. They describe me physically and emotionally. The last and perhaps worst side effect that I'll bother to mention is the brain fog. It's a combination of mood swings, inability to focus, and general detachment from reality. Basically, there were several times when my brain just wasn't working the way that it should, and (I don't know if this makes it better or worse) I was quite aware of that, perhaps too aware of it. It's the most unsettling of all of the side effects. As much as my body changes, I don't really feel like my body is ME. I'm my thoughts more than anything else. What does it mean for GVHD and my medication to be changing my thoughts? Philosophy, 5:30 AM, etc. etc.
So what was the point of all of that ranting? It's really all about my least favorite emotion: resentment. I'm not really going to get better. For a long time, I thought I would, and everyone else thought I would, and everyone said that. Sure, I'll survive, but I'll always be struggling with these side effects, and part of me resents that I have to go through that when most other people don't. I think it might be the ugliest emotion, even more unseemly than vanilla hate. And I don't know how to respond when my dad asks, "But you're getting better?" for the fiftieth time even though I've told him already in that very conversation that I've reached a sort of tableau in my treatment. So I respond the way anyone would, "Sure, a little bit," and I resent myself a little bit more for lying to him. He doesn't believe me anyway, and he shouldn't. But he asks it anyway.
I saw 50/50 last night with Ted and some friends. I remember telling Ted when we saw the preview for it that I thought the movie was made for me but that I didn't really want to see it. Not because I thought it would be a bad movie, but because I thought it would remind me of too many painful memories. And I was right, it did. There were a lot of similarities between me and the main character, though there were also many differences. I won't pretend that I didn't cry through most of the movie. There were some scenes where I was the only one in the theater laughing, and I'm certain that there were some scenes that made me cry for reasons that no one could possibly understand without going through the experience firsthand. I expected all of this.
What I was really dreading was the end of the movie. Spoiler alert: surprise, surprise, he survives his cancer. There is one scene of him months after his surgery, looking almost totally recovered, and it's the feel-good happy ending that you want. But all I felt was resentment. Why does he get to be completely free of it while I have to deal with what's basically going to be a lifelong condition? It's not the first time I've had this thought. I feel stupid, mean, and petty for thinking that other cancer survivors somehow have it easy because their cancers can be cut out once and for all, but I can't help but feel that deep sense of resentment for the powerlessness of my situation.
I try to remind myself that I'm lucky to be alive at all. It's profoundly lucky that medical researchers have been able to fight a cancer of the blood at all given how pervasive it is. Heck, it's profoundly lucky that life even exists at all, and if cancer is a natural consequence of genetic variation then I guess someone has to get it. I still feel profoundly unlucky though, because I am profoundly unlucky. And I'll probably continue to resent that just a little bit, no matter how hard I try not to.