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!

Side Effects, Kareem, and BMT

Just a quick update on some stuff. I'm currently feeling a bit crappy, due to a combination of retaining water, muscle (especially back) aches, and an odd bruise that I need to ask the doctor about. I think I might need to get a new chair for work that will help my back feel better.

Today, Kareem Abdul-Jabbar came out as a fellow CaMeL... though it sounds like he caught things really early and was spared the distress of growing a hump. Needless to say, I've watched the Airplane scene with him in it a few times today. This also explains why he was playing for the Leukemia and Lymphoma Society when he was on Celebrity Jeopardy recently.

Also, I got a phone call from my brother, Billy. He got the results from his bone marrow test, and he is apparently at least a preliminary match. So that's good, at least. Of course, a bone marrow transplant is only a last resort if Gleevec, Sprycel, and Tasignia were all to stop working for me. With any luck, that will never happen.

Odds and Ends

Sorry for the delay between posts, but I'm engrossed in a video game at the moment. Demon's Souls is a very addictive game, and I initially thought I would dislike it due to the difficulty. It turns out, though, that the difficulty is deceptive, since the game is very hard in the beginning and gets much easier as you get a handle of things. I still have quite a bit to do to get the platinum trophy, but I'm well on my way.

I promised to post the picture from the Bodies exhibit in New York, but forgot... so here it is:

Speaking of pictures, here are two more. I've decided to participate in Movember to raise awareness and maybe money for the fights against testicular and prostate cancer. I'm not really the type of person to fund raise, but Carmichael is making me think twice about it. Besides... I think the concept of Movember is brilliant.

Side effects lately have been pretty mild. My stomach hurts for a few minutes when I wake up in the morning, and my muscles have been aching quite a bit but that didn't stop me from going to the gym on Monday and Tuesday. It did on Thursday and Friday, but now that I no longer think my expanding spleen is my expanding fat belly I'm willing to take it easier on myself in terms of working out. Other than that, there was one day where I was a space cadet and had a headache, but those effects seem to have passed.

HotNets in the Big Apple

HotNets and New York

I'm on the Bolt Bus, waiting to leave New York now. I have about a 4 hour trip ahead of me, so I figure that this is the perfect time to write my entry.

HotNets went pretty well. I was much less nervous about this talk than I was about my SIGCOMM talk, but I think that's understandable since the SIGCOMM one was far more important. I think the talk went reasonably well, and there were a few people interested in the work, but I feel like the community as a whole hasn't really bought the whole "systems on OSNs" idea, and probably won't until it actually happens. In some sense, though, that's a good thing, because it means that when we eventually write that paper that it will be even more important.

There were a few very interesting talks. I think these were my favorites: Michael Walfish's talk about which entities in the future Internet should be able to control the path that a flow follows from a source to a destination (their conclusion is everyone on the path), and Michael Piatek's talk which identified how much performance gain P2P apps could really get from favoring intra-domain traffic to the exclusion of inter-domain traffic (not much, despite earlier work such as Ono that suggested otherwise). Another talk I found very interesting was Saikat Guha's, about serving adds locally for performance and privacy, but I have some issues with their assumptions so I'm not convinced that it's quite there yet. From what I hear, Dave has another, similar solution, so we'll see how that goes.

Perhaps more interesting than the workshop itself was an odd occurance during Bryan Ford's talk. He revealed an (I admit) amusing point about excessive encapsulation in some Outlook protocol, and then all of a sudden my back was completely wet. Someone (who shall remain nameless; he's already suffered enough for this) was apparently taking a drink of water and did a spit-take at the joke, all over my back and the screen of my laptop. On the plus side, I've now memorized this person's name and face. I guess that's one way to meet people at networking events. Maybe I should pay it forward...

Getting back to the more Carmichaely side of things, my side effects became more pronounced while traveling, I suspect because I wasn't as able to keep myself hydrated as well as I usually do. I've had aches, joint pain, soreness, nausea, tiredness, edema, and probably some other side effects that I've mostly forgotten by now. The nausea was the worst, since it comes right after lunch when I take my pill, so it was right in the middle of HotNets. Food usually helps, but the food there was so terrible that I felt better going with the nausea.

After HotNets was over, I was still in New York for two more days, but I knew I would be leaving during the day on Sunday so I figured I should get most of my sightseeing done Saturday. Before I say anything else, I have to say this: I love the layout of Manhattan. It's so logical that I immediately was able to navigate both the streets and the subway, I didn't get lost once, and I was even able to give people directions the four or five times they asked for them.

I started with downtown. I went to Wall Street first, then the WTC site, then down to Battery Park to get a glimpse of the Statue of Liberty, then back up to the Bodies exhibit (my favorite part of the trip), then up a little further to Brooklyn Bridge. Then I stopped by the hotel to change, and went up to the upper east side and made my way down along Central Park. Then I went to Rockefeller Center, the Nintendo World store, and Times Square. I was going to make my way to the public library, but it started to rain really hard at that point so I cut my trip short at Grand Central Station. Then later that evening I thought the rain had died down a bit, so I went and had a drink at the Stonewall Inn. Unfortunately, the heavens opened up again as soon as I left the place, so I went back inside and waited it out with a few sodas. Then I just went home for the night. This morning, I hit Madison Square Garden and the Empire State Building before getting on the Bolt Bus. And of course I did some shopping and saw a few other places, but those were basically the landmarks. Here are my impressions:

• Wall Street: Really cool. I think I'm glad I went on a Saturday when things were so quiet. I especially liked the cathedral at the end of the street, as if it were passing judgment on the street and its going-ons.
• WTC site: Too much construction going on. I didn't see squat. But there was still something kind of eerie about the huge open space in the middle of the city.
• Battery Park: Bleh.
• Bodies: Incredibly cool. It's an exhibit of real human bodies that have been opened up and put on display. Morbid and educational... how can you go wrong? They also have a number of abnormal body parts on display, including an enlarged spleen (it was still small potatoes compared to my mighty spud, though). My favorite part, though, and this is still somewhat related to Carmichael, was the exhibit on the circulatory system. They injected some substance into the blood which was bright red in the arteries and bright blue in the veins, and which after some time would harden. After it hardened, they chemically removed the rest of the body. The result was an amazing display of all of the arteries and all of the veins of an entire body. As a kid, vampires were my favorite monster, and then (somewhat independently) I fell in love with Buffy the Vampire Slayer, and now I have a blood cancer. I guess Spike was right about blood (I promise, one of these days I'll get around to talking about Buffy quotes that I find particularly relevant to Carmichael). I wasn't supposed to take any pictures, but I managed to snag one of the enlarged spleen. I just couldn't resist. I'll post it when I get home.
• Brooklyn Bridge: I don't know, it's a bridge?
• Central Park: Really underwhelming. I thought I was going to be more impressed by it, but it felt more like wasted space.
• Rockefeller Center: I bet it would be romantic to go ice skating there if you were in a movie. I'll pass on that, though. It was cool to see 30 Rock though.
• Nintendo World: I liked Nintendo World, but I think Nintendo and I are on the outs right now. Maybe I'm too old for it, but I don't think that's it. I think it's just that they have given up on their original fanbase. They now only target people younger than me and people older than me. I really wanted to buy something from there, but everything was so tacky. The one thing that I found that I could see myself wearing was a wobbufet t-shirt (the t-shirt just had his face on it), but they only had them in youth sizes. At least I got a picture of R.O.B.
• Times Square: Kind of felt like a self-fulfilling prophecy; people flock to this landmark because it's filled with advertisements, and it's filled with advertisements because people flock to it. I don't know what I was expecting though.
• Grand Central Station: To be honest, I was kind of wet, so I didn't really pay attention. The only thing I remember thinking is that the food court reminded me of the food court at Union Station in DC.
• Stonewall Inn: Another landmark where I don't know what I was expecting. It's just like any other gay bar. The people there seemed even more shallow and empty-headed, though that could be due to many factors; I'm older now and disenfranchised with the gay community as a whole, I was kind of depressed at that point from exploring the city alone the whole time, and sampling bias. I went there around 9:00 and was only there briefly, so I only talked to the bartender, two older gentlemen obsessed with finding out my age (I think they didn't believe that I was over 21), and one other person who thought that Maryland was somewhere between New York and California. I knew I'd just be bored back at my hotel room, but the place really had a skeevy vibe to it, so I figured I'd have better luck finding company in the rain. I don't know why I thought that Stonewall Inn, birthplace of the gay rights movement, would be somehow different from the other gay bars and clubs that I've been to in my life, but there you have it.
• Madison Square Garden: I might as well have skipped this.
• Empire State Building: Even though I had a lot of time to kill before my bus arrived, I decided that it wasn't worth it to wait through the line just to have them go through all of my belongings at the security checkpoint. Instead I found the nearest comic shop and got Buffy Season 8 volume 5, which gave me something to do for the last hour or so after my PSP Go's battery died.
  

All in all, it was a fun trip, but it would have been more fun if Ted had come with me. Dinner alone every night without easily accessible wi-fi is not my idea of fun.

Forbidden Fruit

I really like this blog entry's title, but to explain why I will have to take a slight detour before I get to the main point of tonight's post. Bear with me.

When I was 15 or so I kept a "blog", only this was before they were called blogs. This was before LiveJournal, heck, it was before OpenDiary. I actually made my own online diary and didn't share it with anyone for a really long time, and it was incredibly helpful during the coming out process because it really let my friends know what I was feeling. It's ironic that I am so open and honest online (and was so even that long ago) when you consider that my area of expertise is now in privacy in Online Social Networks. After writing in my diary for years, my friend Kara discovered OpenDiary and we both started using that. Then I discovered a hole in their security that allowed me to steal anyone's password, sent them a helpful e-mail to let them know that they had a serious problem, and promptly got my account deleted. Including all of my diary information that I had, by that point, lost all of my local copies. That was my first experience with losing data in the cloud, so you'd think that I would have learned my lesson by now. Google has treated me well, though, so I'll continue to use their services.

Anyway, getting back to the title of this post, I distinctly remember that I used this title before in my old diary when referring to a straight guy that I had a crush on. (I still have crushes on straight guys from time to time, but I certainly don't obsess over them the way I did in high school, which is why you won't see such an entry in this blog.) I find the title of this post so funny because it applies very literally to my current circumstances.

Grapefruit.

I bought several food items from Bytes cafe -- the shop in A.V. Williams, the Computer Science building at UMD -- both this morning and this afternoon. Both times I grabbed a bottle of juice. The shop has basically four selections for juice that I would drink: orange, strawberry kiwi, cranberry, and grapefruit. I tend to favor orange juice and strawberry kiwi, but I get the other two occasionally. Or rather, I used to. One of the very prominent warnings for Gleevec is that I'm not allowed to have grapefruit in any form. You'd think it wouldn't bother me much, since I'm not really that big of a fan of grapefruit juice, but every time I open that refrigerator there I get this terrible craving for the drink that I just can't have.

Incidentally, there are a number of other things I'm not supposed to have, such as Vitamin E and St. John's Wort, but they're mostly easy to avoid (though I tend not to get Naked juice anymore, which is good for my wallet). There is one more thing: garlic. Garlic has been shown to (note: I'm paraphrasing from my understanding of the science behind it) affect the ability of the body to metabolize the Gleevec, so I'm supposed to avoid it as much as possible. This is of course nearly impossible since there's garlic in everything, so I've mostly stopped worrying about it. Grapefruit, however... I'm just going to have to suck it up.

As a final aside for tonight's post, even though I've been feeling great the past few days, I've had a few side effects. There's something strange going on with the pressure in my ears, and it comes and goes, but it's no big deal. I also have a little sore on the side of my mouth, and I had a nose bleed today. I was actually kind of glad for the nose bleed, honestly, because it confirmed my suspicions. I mentioned to Katrina on Monday that I was feeling great and jokingly said that I was thinking of cutting myself to see how quickly I healed (I think I freaked her out with that one a bit) because I suspected that my blood cell counts were trending toward normal. My nose bleed healed very quickly today, so I think my platelets are doing great. I feel like I have much more energy and that I'm more awake, so I bet my red blood cells are hanging in there too. And now I'm (successfully) fighting off the cold that Ted's trying to give me, so I think even my white blood cells are working! I'm actually kind of looking forward to my doctor's appointment next week after all, despite learning today how expensive my hospital stay really was.

I'll just say this: it cost more than I make in a year, and my health insurance is covering most of it, but based on my understanding of the statement from the health insurance company, it looks like I'll be expecting to pay a few thousand bucks. It's a good chunk of the money I've saved up over the past 8 years, but it's a small price to pay to take good care of my health.

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...

I've Got Mail!

Today my labmate, Cristian, defended his dissertation. I've been working with him for several years, and in fact I'm a co-author on many of his papers, so I really would have loved to have been there for his defense. Instead, I was stuck at home waiting for the delivery man to deliver my Gleevec.

Here's the deal with Gleevec. It's actually really expensive at $100 per pill or so, and I, thinking I was a relatively healthy 26 year old, decided not to purchase prescription insurance. Fortunately for me, Novartis, the company that makes Gleevec, has a program for people exactly like me: less than 5 times the poverty level, less than $75,000 in savings, and no prescription insurance. I am incredibly thankful that they actually give me the pills for free! It's funny; I would be paying much more if I actually had prescription insurance.

In any case, I was approved for this program on Friday. Until today, I had been living off of medication the doctors gave to me at the hospital, and I could tell that they were running out of options for getting me deals on it. Today the delivery man delivered a month's worth of Gleevec. To my surprise, he also delivered something I ordered last week, a new pill box!

From Miscellaneous

I'm really pleased with it! I figured that since I'd be on pills for the rest of my life, I might as well have a convenient way of carrying them. I wish it were a tiny bit smaller, so that it would fit into my change pocket, but I really can't complain.

Fortunately, my deliveries arrived in time for me to catch up with the lab before they went out to lunch. On my way to the lab, I ran for a few minutes in order to catch the bus. As I was running, I suddenly felt a pain in my chest, and at first I thought it was my heart. My heart was pounding, way harder than it usually does when I'm exercising. But I eventually realized that the pain was a bit lower, and I think it was more related to the fact that I strained my muscles a bit carrying home groceries last night. For kicks, I tried running on the way home also, and felt it again. I'm definitely going to ask the doctor about it at our appointment on Thursday, and until then I'll try to manage my exercise routine carefully.

Despite being distracted by side effects, I was very productive at work today, and we all got to have fun at Cristian's celebratory lunch. Between my productivity this weekend with installing Ubuntu 9.04 and with my work today, I'm really feeling like I'm getting my life back on track, and that makes me really happy.

Racing heart

Well, I did manage to finish installing and configuring Ubuntu 9.04 last night around 5 AM. I think in the long run I'll be happy that I had to install from scratch. The system is running very smoothly and I'm pretty satisfied with it.

After finishing, I tried to go to sleep, and had a lot of trouble. I had been retaining water all day, and my legs felt very odd. Laying down was pretty uncomfortable, and I noticed my heart was racing. I was especially nervous since Ted wasn't around to help if I had a problem. I made it through the night, and Ted returned today.

Whenever my heart races, I can't help but feel nervous. Right now all of my blood cell counts are low, and I worry that if something did go horribly wrong that I wouldn't be able to tell that it was coming. This just makes my heart race more, so I had to really focus last night to calm down and keep a steady beat going. Eventually, counting my heart beats put me to sleep, and I made it through the night. Around 8 AM I got up and turned on the TV, then fell asleep again on the couch until 10:30. After that, I was fine, and a lot of the fluid retention was gone. I'm still retaining a bit though; I've been drinking a lot of water all day long, so hopefully that will help.

I'll try to give some updates on the progression of my blood cell counts after my appointment on Thursday. I will be very interested to see those results, and I hope that they've gone up from last week.

I need to do some work tomorrow; hopefully I'll finish cleaning up the camera ready version of my HotNets paper, I'll write my part of the quarterly report for the GeoMAN project, and I'll pick out and read a paper for Syschat on Wednesday. These all kind of depend on when my medicine arrives tomorrow; I'll wait until then to explain the deal with my medicine. In any case, I'm going to bed now to try to fix my sleep cycle. Goodnight!

Screwed up my sleep cycle

So I did something stupid last night. I decided that now would be a good time to upgrade from Ubuntu 8.04 to 9.04. As a result, I stayed up until 2 AM, and it still wasn't done.

Then the upgrade process was interrupted by a family gathering. It was nice to see the Baden side of my family, since I don't get to see them often and I hadn't seen most of them since I started hanging out with Carmichael. After our lunch together, I went back to my brother Billy's house and spent some time with my niece, Betsy, and nephew, Drew. We all (even the kids) ended up taking naps for whatever reason.

Fast forward to tonight. It's now 3 AM. I had a perfectly working version of Ubuntu 9.04 in time to watch Saturday Night Live, but I wasn't content... I wanted to clean my system up a bit. I ran baobab and noticed some file duplications. What I failed to notice was that during my upgrade today, I tried to install boxee, which involved a hack to run the 32-bit version, which created some hard linked directories... Long story short, I practically did rm -rf / (FOR THE LOVE OF GOD DON'T TRY THAT AT HOME), effectively ruining both all of the progress I had made and bricking my system. And people complain when GMail is down for an hour.

Fortunately, I didn't have anything too important on there... I'm mostly living in the cloud these days, after all. I don't know what I'd do with out Google. Cry, probably.

I'm thinking I'll just not go to bed tonight and instead take a nap in the afternoon. That should reset my sleep cycle, right? Ted gets back tomorrow evening, and he'll get to see my brand new side effect: fluid retention! It's pretty gross. My legs feel like plump hams right about now, and I have really weird things going on around the edges of my clothes. Still, here's to another day. :)

Side Effects

As I previously mentioned, I'm taking Gleevec. Gleevec is a great drug; unlike typical chemotherapy, it is specifically designed to target the problem cells that Carmichael is making. Of course, it comes with a fair share of side effects. I recently subscribed to the discussion board for Carmichael (he has his own BBS!) on the LLS web site, and unfortunately it's creeping me out a bit. People much further along than me are complaining about the side effects and their quality of life on Gleevec. Then again, they also thought the bone marrow biopsy was really painful, so I'm not sure that I can trust that their experience will be similar to mine.

Speaking of unspeakable pain, I've so far had three temporary side effects from my medication. The first was a rash, which I believe was caused by Hydroxyurea, a chemotherapy medication I was on immediately after diagnosis to bring my alarmingly high white blood cell count down from 430k per hundred mm cubed to a safe 4k-11k. I'm off the Hydroxyurea now, thankfully. Another "side effect" is that Gleevec is preventing me from regrowing some new (albeit cancerous) bone marrow cells, so I'm currently just plain low on bone marrow, which also means that I'm low on all of my blood cell counts. This means I'm slightly anemic, and a little tired, and more importantly, low on platelets, so when my vicious cat Shabby attacked me this evening, I actually bled much more than usual and ruined a sock.

However, those side effects pale in comparison to the third one which I experienced three days ago. I woke up to my new gift in the morning, an excruciating pain in my left toe. After hobbling to a bus that took me to UMD's health center, I was quickly diagnosed with gout, which my third medication (allopurinol) was supposed to prevent. One day and a few painkillers later, it mostly went away, and now I only feel it if I try pretty hard. Interestingly, I don't remember the pain much now, only the certainty that it hurt more than anything else I'd ever experienced. I remember a similar experience when I accidentally stabbed myself in the eye with an umbrella as a child. I got through that pretty easily and realized that when things are really painful, my brain is really good at shielding me from that pain, and for that I am grateful. By the way, to get through my bout of gout, we gave it a nickname too: Gary.

As for other side effects, who knows when they'll strike? One of the most annoying things about Carmichael is that I'm now constantly questioning anything I feel. Did I feel like this yesterday? Have I ever felt this feeling before? Even if I haven't, is this just a normal feeling that's unrelated to Carmichael? How can I tell if something's serious, and what do I do if I mistake something as being minor even though it's dangerous for me? I guess these are just the questions I need to deal with, but still, I think I'd feel a bit better if my boyfriend, Ted, weren't gone to a family reunion this weekend, leaving me home alone for the first time since my diagnosis...