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!

Dinner with the Ulman Cancer Fund

Today I was invited to go to a dinner with some folks from the Ulman Cancer Fund, a cancer fund specifically for young adults (15-39). I didn't really know it at the time, but the dinner was mainly to get sorority members involved in fundraising and service for the Ulman Cancer Fund, so I kind of stuck out like a sore thumb as one of the 6 guys in the room; and 3 of them were there as members of the organization. I'm used to standing out, though, and that's basically the topic of my post tonight.

For starters, the dinner tonight was not geared toward me, but it was supposed to relate to me. We heard at least three stories of young adult cancer survivors, only one of which was delivered by the actual person (she happened to be the same person who introduced Obama when he was on campus recently). Whenever I hear these stories, I kind of feel like a phony, though. Treatment for Carmichael is very simple compared to all of these other cancers; I just take a pill every day or so. So even at this basic level, I already feel that I don't fit in.

Then Brock, the main speaker, went on to talk about all of the problems that young adult cancer patients face that other demographics don't, such as having difficulty paying for college or having to worry about infertility. The former I've never had a problem with (and my advisor, Bobby, really looks out for me in that regard), and the latter is not something I'm concerned with. If anything, it makes any decisions I might have had to make easier: if Ted and I actually want to have a biologically related baby at some point, I suspect we'd have him be the father. In some sense, I think that cancer support is heterosexist, but I can't really complain about it too much since I don't really need the support and when you start taking intersections of minority groups like that you quickly get down to a tiny group of people. For example, I'm guessing I'm the only young adult gay man who uses Linux with CML at the University of Maryland.

At the meeting tonight, I couldn't help but be drawn back to the days when I was involved with the gay community at UMD. I thought activism was so important, and that I needed to be a part of it. It took a few years, but I realized that I've got way more important stuff going on in my life than these issues. That's not to say that activism isn't important, both for gay rights and for cancer support, but it's to say that my talents are better suited elsewhere.

I think that this last point really highlights some irony in my life. I really feel like I've had a much easier time dealing with Carmichael because of everything I went through as a teenager when I dealt with being gay. There are actually a lot of parallels. When I received my initial diagnosis, it felt like my world had ended, but I have to admit that I felt the same way when I first uttered the words, "I'm gay," in the shower when I was 14. Then there was the problem of telling everyone I know and love that my life has changed; when I was young, it was a long and painful process to tell everyone, but I really learned from that and was able to deal with it quickly as an adult.

Really the toughest part is coming to terms with your new identity. I was an ordinary guy as a kid, and then all of a sudden I realized I was a gay man, and that was not an easy transition to understand my life in relationship to that new identity. After adjusting to my new identity that first time, it became very easy to adjust to changes to my identity in the future. So naturally, I adjusted to being a cancer patient very quickly, and life returned to normal very quickly. Sure, there are some issues still, but there are still issues with being gay, too, so life is pretty normal these days.

In the end, there are a few new interesting issues at the intersection of these two aspects of my identity. The first is that the Red Cross does not allow gay men to donate blood, which most likely delayed my diagnosis. That really irritates me, but I'm not sure how to effect a change in their policy or even that it would actually be a positive change from a purely statistical standpoint. The second is that my attitude toward gay marriage has changed somewhat. I no longer feel that it can wait and that it will happen eventually; I want to get married, and although I plan to live a long and happy life, being faced with my own mortality makes me want to get married sooner rather than later.

Fortunately, it could be legalized in D.C. very soon, so I may get my chance. Maybe I should be saving up money...

Normal Again

I felt pretty normal today. That probably wouldn't sound like an accomplishment to most people, but this is the first time since I was diagnosed with Carmichael that I've really felt that things were normal again.

Today was a lazy Sunday, just like any other lazy Sunday I've enjoyed with Ted for the past 5 years or so. We got up around 8 o'clock (that's late for us), and Ted graded papers while I played "Holy Invasion of Privacy, Badman! What Did I Do To Deserve This?" on my new PSP Go, which of course I played with a PS3 controller on our nice TV. At 10:00, I switched to just the PSP Go while Ted watched This Week. Then we took a shower, and then I played more of my game. Around noon, Ted made lunch and we watched a DVRed Saturday Night Live together. Then I played my game for a long time, until right before dinner time when we started watching Across the Universe. We took a break in the middle for Ted to make a delicious dinner, and after we finished dinner and the movie, Ted watched 60 minutes while I did the dishes. Then I just played "Prinny: Can I Really Be the Hero?" for the rest of the evening since I had finished my other game.

It was nice. The only time I really thought about Carmichael was when I took my pills, and that was pretty brief. I've had no side effects to speak of today, although I have had some cramps in my hands; while this is a side effect of Gleevec, it is much more likely that this was caused by the frustration of playing "Prinny: Can I Really Be the Hero?" It's fun, but frustrating.

I'm hoping that tomorrow will be just as good, because I have a lot of work to do by Wednesday. Wish me luck.

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...

Failed Diagnoses

By the time I finally got Carmichael diagnosed, my spleen was between 12 and 15 pounds. Here are the before and after pictures I took.

From Before and After

As you can imagine, I was happy to get that weight off. All it took was some chemotherapy, and my spleen shrank back to the slightly larger-than-normal size in the picture on the right. To give you some perspective, I lost at least 10 pounds in a week.

That being said, you might wonder how I came to have such a large spleen without realizing that something was wrong. Part of it was certainly denial. I had symptoms for such a long time, but I never really felt sick, and I wasn't really sure how serious the symptoms were or if I was just imagining them.

My symptoms began nearly two years ago. It started as a constant cough that wouldn't go away. After three months, and after my next paper deadline, I went to the doctor to find out what the problem was, and she told me it was allergies. I tried some allergy medication, which obviously did nothing. A few months later, I tried again, and they said allergies. They also checked for asthma and decided it wasn't that. After two more "second" opinions, I finally got a referral to a specialist. He looked at me for less than a minute and told me that it was asthma, and gave me a bunch of medication, which again did nothing.

I never could figure out what it was... until yesterday. I just realized that I haven't had to cough the way I used to even once since I left the hospital. My best guess is that it was due to the splenomegaly, that my spleen was pushing on my lungs, or something. So it took many attempts at diagnosis to discover Carmichael.

As for my other symptoms, there was the splenomegaly; I just thought I was putting on weight! I exercised a lot and even dieted a little to avoid it (which explains why I'm too thin now). There were also some swollen lymph nodes around my groin; this is what eventually prompted me to visit the doctor again, even though I have had swollen lymph nodes before that went away on their own. But really, other than that, I've felt very healthy! I was floored when I discovered how serious my condition was.

I also noticed a slight drop in my workout performance, and I had a lot of difficulty with my public speaking (I presented some of my work right before getting diagnosed), but I just chalked these things up to getting older and nerves respectively. It's just so easy to explain away each individual symptom when you can't see that they all relate in one big picture.

There were two other factors that delayed my diagnosis. The first I can only blame on myself. I have been so busy with work and research for the past two years that I neglected to take care of myself. I really hope that others will listen to me when I say that no matter how important your work seems, it is never more important than your health.

The second annoys me much more. Apparently Carmichael is typically identified through routine blood tests. This makes sense in general; it's much more common in older people who are probably more likely to be getting routine blood tests. But another way that it could be discovered would be through ordinary blood screening through a donation to the Red Cross. And I would love to donate to the Red Cross, but they don't want my blood. Well, to be fair, they shouldn't have wanted my blood... but they didn't want my blood for the wrong reason, because I'm a gay man. When I think of what could have happened because they are unwilling to take blood from gay people, it really makes me angry.

Well, despite everything, I DID get diagnosed, and I am still in the chronic (earliest and most treatable) stage of Carmichael. Things could be worse, but I also worry for others who might not be as fortunate to be diagnosed in time.