Hospital Thoughts

I've been in the hospital since the 11th, I think, and it's the 26th now. For the most part, my treatment hasn't been much of a problem.  Except for a few days where I couldn't get my eyes to focus enough to even watch TV, things have been moving along quickly.  I suspect that a season of 30 Rock and three seasons of Battlestar Galactica have had something to do with that. 

I've been on all manner of drugs, and at some point I just lost track of them. I think before I get out of here I need to get some of this information written down.  Maybe I'll also get a log of my blood cell counts.

Among the more eventful days in here: when Katrina visited, she gave me and my advisor, Bobby, mohawks. We figured that since my hair was going to fall out at some point, it would be fun to have a mohawk until that happened.  Of course, I was expecting my hair to fall out any day, but it's still hanging in there.  I assume it will fall out during the final round of chemo before the bone marrow transplant.

Also fun was Christmas Eve.  We had Christmas at the hospital, and I got to open my gifts.  My whole family showed up, which was nice, but I was tethered to my IV pole sucking down blood, which put a slight damper on the occasion.  Still, we had a good time, I think.  Mom is still struggling with everything, but she made it through.  She's having a tough time with life in general, and I tried to convince her to talk to her doctor about it, but she says she can only deal with one problem at a time.  I hope she can get over this, because I'm really worried about her state of mind after all of this.  I just hope that she'll feel better about all of it when the bone marrow transplant is done and when it looks like I'm cured.  Only time will tell, though.

Even though my stay has been uneventful and not too bad, I'm itching to get out of here. I want to go back to work as much as I can, because I feel totally useless right now with my life, which is to say my social and professional lives, trapped in limbo like this. More than anything though, I just want to be at home alone with Ted for just a little while, for things to be like they were before I came in here. I miss him so much, and his visits aren't really the same as being with him at home.

The good news is that my blood cell counts are now trending upward, so I'll probably be out of here some time this week.  I hope that life can go back to an approximation of something normal, but it's tough to say at this point, with the bone marrow transplant looming over me. I need to start thinking about my research again, and in particular I need to deal with some bureaucracy involving my proposal. Technically I'm supposed to propose by the end of the semester, and while I'm sure I could use this as justification for an extension, I'd like to get my proposal done with.  Not to mention... Well, let's just say that Bobby is taking all of this very hard, and I want to make sure that I graduate as soon as possible because it's in everyone's best interest. I would have liked to be able to pad my CV a bit more before getting ready to go on the job search, but it's too late for that now.  I kept putting off doing internships, because it never seemed like the right time, and now this summer I'm sure I need to stay in the area for my doctor visits, so it looks like I'm just never going to make it into an internship; I hope that doesn't hurt me too much when it comes to getting a job.  Still, all of that is really a long way off, it's just tough not to think about long term goals and challenges after having my life put into perspective the way it has been recently.

Finally, as much as I love Zipcar and think it's a great idea, I don't think it's going to work for me anymore with all of the doctor's visits. For that matter, it's time for Ted to get used to driving again, especially since he'll probably be getting a new, real job this summer. It's time for us to grow up and become more responsible, and I think a part of me is going to really miss grad school when we have to move on, no matter how much I've complained about it. It really has been a special time, and I wouldn't trade it for anything.

A Post to the LLS Boards

I rarely write such in depth posts, especially to the people I met on the CML board on the LLS web site, but I figured that since it was pretty in depth and it summarized a lot of the stuff I've been thinking about that I might as well include it here as well. Enjoy!

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Things are going very well.  My treatment seems to be working as the doctors plan, with few side effects. I'm not lacking for candy, food, or entertainment thanks to friends, family, my Wii, Netflix, and Hulu. The only thing I wish is that my boyfriend could be around more often, but unfortunately he's stuck in College Park giving his students their final exams, and even once he does that he doesn't have a car so he can kind of only get up here based on when my other friends and family are stopping by.

Other than that, things are looking up and I'm excited to see my brother Bobby on Wednesday, since he's getting back in the US after being in Japan for several years doing missionary work.  He actually planned this four-month furlough before I was even diagnosed with CML in the first place, so things are kind of working out for us in that regard.  My other brother, Billy, is my bone marrow match, and we haven't tested Bobby yet and may not need to. I feel especially bad for my mom...  Christmas is her favorite holiday, and for the past few years she was so sad that Bobby wasn't around and that we could only see him over Skype.  She was so excited that we were all going to be together this year, but now it's just not going to happen, because my niece and nephew are too young to be allowed to visit.  So it looks like I'll be the one on Skype this year.

I think the hardest thing for my mom, and the rest of my very religious family, is that I'm an atheist.  My mom seems to think that it means I must have given in to despair now, when really that couldn't be further from the truth.  I just feel bad that it's such a struggle for them, and I wish they shared my point of view. If I could, I'd pretend that I had converted to Christianity while in here just to make them feel better about the possibility that I might not make it through this.  There are a few problems with that.  The first is purely a logistics problem; I'm a terrible liar and I can't keep a secret --- that's pretty much the entire reason I came out to my family when I was 16 years old, since living that lie had been weighing on me very heavily.  In fact, I only waited that long because I wanted to make sure I had my driver's license before I told them (because you hear some horror stories about children being disowned).  In retrospect, I don't know what I was so worried about.  I couldn't ask for a more loving, caring, or accepting family. That being said, the other problem with faking a religious conversion is that I couldn't possibly deal with the fallout.  I plan to survive this crap, and recanting my conversion once I'm out of the woods seems too cruel to even consider.

So I'm hoping that my mom can square herself with my beliefs that the world just is the way it is, and there isn't some divine hand reaching out to decide my fate, that all of this is due to chance and not due to either a cruel deity if things end up poorly or a benevolent deity if things work out well.

Thanks for keeping up with me. I've got plenty of time to just think about my situation, so I don't mind sharing if people want to hear it.  In fact, I think I'll post this on my blog as well, because I'm guessing my friends and family will be interested in reading this stuff as well.  In case I haven't mentioned it in a while, my blog is at http://livingwithcarmichael.blogspot.com ... I'd change the title now that I'm living with "Allistair" instead, but I'd prefer for people to still be able to find my blog.

Living with Allistair

Wow, a lot of stuff happened pretty quickly.  I'm kind of loopy at the moment thanks to some Benadryl, but I'm going to try to write a quick post to summarize the past few days.

Thursday I came in to the UMGCC for a regular checkup to make sure my blood was responding correctly to the Gleevec.  It turns out that it wasn't.  The doctor noticed that my white blood cells were more numerous than they should have been, and a few tests later revealed that my CML has advanced to ALL -- hence the title of this post.  Carmichael was a lot more fun than Allistair, because it sounded so very treatable and everything.  Allistair, on the other hand, is going to require some serious chemo, followed by a bone marrow transplant.

The next day I was admitted to the hopsital, which is where I am now and where I'll be for the next four weeks.  That means that I'll be missing Christmas, New Years, and of course Sigcomm.  As much as I enjoy all three of those events each year, I understand that my health is more important so I don't mind getting that in order instead.

My mom is taking it very hard, probably harder than I am.  Every once in a while I have some pretty sad thoughts, but I find that if I try to put myself in Buffy's shoes, I feel stronger and more confident that I have the wherewithal to see this through. The one line of thought that really gets to me is when I start thinking about Ted, and how I wish that I had had the chance to marry him, and that I worry so much about how hard he might take it if I were to die. But Ted is strong too, and I know he'll make it even if things don't work out.  That being said, I'm Buffy, so I'm going to fight tooth and nail to make it through this safely. One advantage I have now is that this is a more permanent solution; if this treatment plan works, I could be cured, and that would be a nice feeling.  It's going to take some time to get there, but it will be worth it.

Currently, I've just started on the serious chemo.  This particular bit of chemo is kind of tricky in that it apparently is more likely to cause an allergic reaction than many other kinds.  I seem to be doing well, but as a precaution they gave me a shot of Benadryl which made me really loopy for a while.  I'm coming out of it now, though, and the initial treatment seems to be working, so I think that I'l be able to do just fine with this stuff.

Other than that, there's not much to say at this point.  They added something called a "pick line", which is basically like a semi-permanent IV that they can use to give me IV drugs and to draw blood without sticking me each time.

Installing the thing was quite the experience.  The nurse used an ultrasound machine to find one of the central veins in my arm.  After poking around in one spot for a little while, she tried a different spot and then had no trouble.  In the original spot, I had a hematoma, but that seems to have disappeared and now things are getting back to normal.  This line actually consists of a 41 inch catheter that deposits the IV fluids very near the heart; it goes in my arm and feeds all the way in to my chest.  It's pretty weird, but pretty cool, too!

Anyway, food is here. Wish me luck on the rest of my stay here in UMGCC.  I'm in room 51 on floor 9, if anyone wants to stop by to visit!

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.

Post-Thanksgiving

I thought about mentioning how much I dislike a few of the members of my extended family in my last entry, but it sounded a little harsh in my head so I ended up deleting it.  Then Thanksgiving happened. I was going to say that they're racist bigots, and now I can share very specific examples from this trip.  Keep in mind, in particular, that this was Ted's first time meeting these people, so he was effectively a stranger to him, he was my guest, and yet they still acted this way in front of him.

First, my cousin Andy uses the n-word.  A lot.  Not only does he use it, but he uses it excessively and casually.  It makes me ashamed to be related to him, and I indicate my disapproval (and discomfort) every time he says it, but that doesn't stop him at all.

As terrible as that is, my cousin Todd somehow managed to top it, perhaps not in vulgarity but at least in rudeness. At first, in front of everyone, he used the word "gay" to mean "bad".  I knew things would not go well after that, and I can't believe he would be that rude to Ted, but I guess it just means that he doesn't think about the words he uses.

The real trouble came when we went to bed.  You see, we had Thanksgiving in Todd's house this year.  It's a really nice place; Todd and his wife got a deal on what's practically a mansion (albeit in the middle of nowhere) thanks to the economy, so there was plenty of room for everyone.  When we took a tour of the house, Todd made sure to tell everyone else where they could sleep, but he never told me and Ted.  I figured I'd just ask later. I was a little nervous, because I had spoken to my mom on the phone the previous night and she said that she thought Todd might be uncomfortable with me and Ted sleeping in the same room.  I assumed she was just expecting the worst, but after I asked where we could sleep, it became apparent that Todd had actually told her that in advance.

Absolutely humiliating.  Todd got this embarrassed look on his face and said that I could sleep in one room and Ted could sleep in another. I didn't tell Ted what my mom had said, so this took him completely by surprise, and so he just asked why we weren't both just sleeping in the one empty room.  Todd said that he wouldn't be okay with it, and then said that he didn't even let his brother, Tevin, "do that", which, since I know Tevin isn't gay, I can only take to mean sleep in the same room out of wedlock? Of course, he and I both know that Ted and I can't get married (yet), but I'm sure that wouldn't change a thing.

I was quite upset that I put Ted in that situation, but I know he can handle it.  The thing that actually upsets me the most was Todd's attitude.  He was visibly ashamed that he was telling us to go to different rooms.  He could clearly tell that what he was doing was nonsense, rude, and immoral.  His "faith" has blinded him from thinking for himself.

Well, like a decent guest I obeyed the rules of Todd's house. I didn't even make a scene even though I felt entitled to do so. Instead, I just decided to never spend Thanksgiving with those people again. I don't mind them showing up at my parents' house, or my brother's house, but I really don't feel the need to go to one of their houses for Thanksgiving ever again if that's how they'll treat me. They don't consider Ted to be part of the family, but I guess that's not too surprising since they don't really consider me to be part of the family either.

And people wonder why Thanksgiving is my least favorite holiday...

Pre-Thanksgiving

Thanksgiving is just two days away, and I've got a lot to be thankful for.  For instance, compared to last year, I've got my health!  I've had another wonderful year with Ted and I have a loving, caring family.  I've grown closer to my labmates and advisors, which I'm going to mark in the win column.  I've been incredibly (I would almost go so far as to say "unbelievably") successful with my work, between my Sigcomm, HotNets, PAM, and IMC papers (holy crap, were those all this year?), the Best Student Paper Award for Persona, and the fact that two of those papers will be going towards my thesis.  Sony and Obama are pairing up to get LittleBigPlanet in libraries across the nation, so I even have hope for the future of America.

Seriously, the game is that amazing. I only wish that I had more time to play it! Sadly, the slow and steady march of progress moves me on to other games, but LittleBigPlanet will always hold a special place in my heart, along with Super Smash Brothers Melee and Disgaea.

In any case, tomorrow I go to the doctor for a check-up, from which I'll leave to go to my cousin's place for Thanksgiving.  The check-up should be pretty interesting; I think I'm getting the results from my PCR, which should be interesting on way or another.  I also need to see what's going on with my next shipment of Gleevec.  It should be here by now, I would think, though I do still have about two weeks worth of Gleevec, so I'm not too concerned yet.

I'm sure my family will enjoy my mo tomorrow. I facebooked (shush, spellchecker, it is a word if I say it is, and so is "spellchecker") Anika today to ask about getting dye for it, and it sounds like she'll be able to give me some.  I'm thinking of going with a dark blue, and depending on my mood at the time and the quantity of hair dye she can give me, I'll dye my hair, too.  Look forward to a picture of that!  I may also have a mo-shaving party.  Dave suggested that I serve mojitos and mogaritas (with coconut shavings instead of salt).

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.

Paranormal Activity

Well, I don't think I'm going to get back to sleep any time soon, so it seems like a good time for a blog entry.

Things have been pretty quiet here ever since my last doctor's appointment. I've been preparing for my Bond Breaker presentation at work, and I'll be heading up to New York for that tomorrow afternoon. At home, I've mostly been trying to play as many video games as possible because I have had a serious backlog ever since the PSP Go came out. I'm currently working on Wild Arms XF (which is pretty good!) and Demon's Souls. The latter really bothers me because the title is so stupid and they really made some terrible game play decisions. Unfortunately, it's for the PS3, so that means I'll need to keep playing it until I get the platinum trophy (or risk breaking my current streak!).

This weekend was somewhat busy due to a day with Ted's friends on Saturday and then lunch with his dad on Sunday. The biggest thing of note was that we went to see Paranormal Activity with Kevin on Saturday night. I really enjoy scary movies, so I had little doubt that I would enjoy it, but I'm pretty sure that this movie is the scariest movie I've ever seen. It's not that there are a lot of things jumping out at you suddenly (though there are a few). Instead the movie relies on a steady build of tension as the events unfold and escalate to an inescapable conclusion. The part that makes the movie really scary, though, is the fact that it seems so realistic and that it all takes place in a fairly normal couple's bedroom.

After watching the movie, you're left with a bunch of haunting images of events from the movie that would freak the crap out of you if they happened in real life. Then when you try to go to sleep at night, your imagination gets the best of you and you really start to think about those events and worry more and more that something like them could happen to you. You remind yourself that the paranormal isn't real, but it's a small comfort since you can't shake the images from your head and they seemed so authentic.

So, that being said, I've had trouble falling asleep the past three nights. Not a lot, mind you... eventually I find a new topic to occupy my mind and have no trouble falling asleep. But the movie is usually the first thing that comes to mind and so it takes some time to get past it.

Tonight, on the other hand, I had no trouble whatsoever falling asleep. On the past three nights, as is typical, Ted fell asleep before I did, but tonight I fell asleep first. I think that could have been the difference. I'm not quite sure what happened, but all of a sudden I found myself bolt upright in bed. Ted was already sitting up and screaming in genuine terror. I grabbed his shoulder and arm to try to calm him down and he started looking at me and continued to scream, at me, for about five more seconds. I finally calmed him down enough to get him to tell me what was happening, and he said that he must have heard Shabby knock over a glass or something. Vaguely in the back of my head I felt as if I had probably accidentally tapped my night stand, which has three glasses on it sitting side by side so they would clink together, enough to make a noise but not enough to wake me up at least.

Needless to say, this whole incident freaked us both out quite a bit, but I think we're calming down enough now to go back to sleep. Immediately afterward my heart was racing really fast and I was actually a little worried about it, but it's fine now. I guess I'm just surprised because I didn't think Ted was really having any after-effects from the movie like I was, but I guess he must have been...

Dearly Departed

On Tuesday I got some bad news from my friend and labmate, Dave. His mom passed away. We all knew that she had been having some troubles, recently, but I at least didn't know that it was life-threatening, so it kind of came as a shock to me at least. It turns out that it was a recurrence of breast cancer. Most of "the lab" -- Bobby, Bender, Cristian, Aaron, and myself (and obviously Dave) -- attended the funeral, in part to be there for Dave and also because we had actually met his mom at his thesis proposal. I didn't really get to talk to her at that time, but she seemed like a wonderful woman, and that first impression was reinforced at the funeral service. I haven't lost someone as close to me as she is to Dave, so I really can't understand what he must be going through right now... all I can do is be there for him if he needs me.

Unsurprisingly, this is the first funeral I've been to post-Carmichael. Part of me wants to say that it affected me differently than previous funerals, but I don't think it would be entirely honest. I remember going to the funeral of Kirstin, a girl I went to elementary school with who died in a car accident, and thinking at the time that it could have just as easily been me in that car. The same thing happened with Jordan's funeral after high school. As much as I go to these events to mourn the passing of the people I know, I feel like I also look at them as a reminder that one day I too will die, and I'll have one of these services of my own. Maybe I've just been watching too much Dead Like Me, but I really kind of wish that my death is something spectacular. It would be even cooler if I died doing something heroic, but modern life does not leave much room for heroism. No, in all probability, I will die of something mundane, but with any luck it won't be because of Carmichael, and it won't be any time soon.

The world marches on past Dave's loss... less than an hour later I found myself at the doctor's office. Today's appointment was a little shorter than the previous ones had been; I probably could have gone in to the lab for a few hours afterward, but between the funeral and the rain I just didn't feel like working today. My next two appointments (in two and four weeks) will just be a matter of getting blood drawn, and then they'll call me if there's anything unusual. Then in six weeks I'll have a full appointment again, and they'll do a FISH test to see details about Carmichael. Until then, as I have been anticipating, my CBC is looking very good across the board, so in some sense I'm doing better than I've done in a really long time. Hurray.

PP (post... post): For the record, when I die I want to be cremated, and have my ashes spread somewhere cool, like in an active volcano, space (including, but not limited to the moon), or Antarctica. If those are all too difficult, then a cave would suffice, but it should be pretty deep at least.

Another lazy weekend

Ted and I just had another lazy weekend. I'm still feeling great, but rather than take advantage of that fact I spent the entire weekend playing video games. I didn't even get any work done, as I had planned, so I'd better just buckle down and really work tomorrow in the lab. I'm pretty sure Bobby will be expecting a report from me about our SIGCOMM plans -- and possibly also about the Bond Breaker slides which I haven't touched -- so I'd better be ready. Maybe I can think about SIGCOMM while I work out tomorrow morning. I'm planning on starting my Wii Fit workout routine in the morning as well.

As for this weekend, I finished "Prinny: Can I Really Be The Hero?" and have moved on to Wild Arms XF for the PSP. It's pretty fun! Also this weekend, Ted and I have started playing LittleBigPlanet again. We previously took a hiatus because our PS3 memory was wiped, but over the course of this weekend we've unlocked most of the items in the game. Really, the hard parts are over, so now it's just a matter of time. When we're done, we'll be able to make some stages again, so I'm looking forward to that. It really is a fantastic game.

Sorry to keep it so short, but I'm tired and I'd like to get some sleep tonight (unlike last night). I'm currently looking forward to Thursday so that I can get confirmation that my CBC is looking good...

SIGCOMM Pitch, Wii Fit Plus, Harley, and Dollhouse

I was a bit frustrated yesterday by the SIGCOMM pitch meeting. Before we begin working on papers for each big conference, we always have a pitch meeting where we throw out our ideas to try to flesh them out a little and figure out who will work on which project. I think Bobby and Neil were disappointed that we weren't ready for the pitch meeting, for me especially since unlike everyone else I haven't had a paper deadline to work toward. I've been busy with other stuff; being in the hospital for starters, doing a few small assignments for GeoMAN, making the HotNets camera ready and slides, preparing for Syschat (though it's understandable that they would forget this since I didn't actually end up giving that presentation), and trying to read a few papers. These tasks have been a little difficult for me, especially on certain days like yesterday and today when I get stuck in a loop where I think to myself that I'm being unproductive, which then causes me to be unproductive, which then makes me think about it, etc.

Anyway, Persona won the best student paper award last year, so there's a lot of pressure to make the follow-up paper for it. I just haven't really had any ideas that have anywhere near the same importance as Persona, and thus I feel a little inadequate. Couple that with the fact that I didn't find out about the SIGCOMM pitch meeting until last Friday, at which time Bobby told me I needed to work on the iOwes project with Dave, plus I needed to make the Bond Breaker slides for Syschat on Wednesday still, and it's easy for me at least to understand why I wasn't ready for the pitch meeting. Oh well. I suspect in the end that the point of the pitch meeting was really just to light a fire under our butts anyway, not to make us feel bad about not being ready for it, so I'm not going to let it get to me.

Yesterday evening I got to use the new game I bought on Wednesday night: Wii Fit Plus. I really liked Wii Fit, but found it to be basically useless for working out because you had to spend so much time just pressing buttons to get from exercise to exercise. Now you can set up entire routines of both strength training and yoga, and this is absolutely perfect for me. I'm hoping that this coming week I can start getting up early in the morning to do a workout before I head into the lab, but we'll see. My first workout convinced me that over the course of my treatment, I've really let myself get out of shape and I need to work on it. A few of the stretches felt like I pushed myself a bit too hard, and some of the exercises put more pressure on my previously gout-ridden toe than I'd like, but other than that, Wii Fit Plus seems like the perfect way to get some real exercise at home.

After my workout yesterday evening, Ted's college friend Harley came to visit us. We went to my favorite restaurant for dinner, Siri's: Chef's Secret, and just chatted about various things. We talked about how I was getting along, and Harley and "Grant" (Ted's name before he came to UMD) caught up on old times. Harley seemed to have this doom and gloom mentality, as if I would drop dead any minute, and that I needed to be out living life to the fullest. I don't know that I necessary disagree, but I like to think that I'll live for at least another 30 years, as some Gleevec researchers are predicting. Plus, by then, they'll probably have a surefire cure.

Today I tried to flesh out some of the ideas we brought up after the SIGCOMM pitch meeting, but I was really distracted, it was really cold in the lab (it has been for a while), and it was such a beautiful day outside. I ended up leaving early. I figure that in a month or so, I'm going to start spending all of my time in the lab, so I can afford a little bit of down time until then. One thing that probably would be nice is if I did my thesis proposal largely based on the planned SIGCOMM paper, and got that over with in November some time, but we'll see if there's time for that. It might be tough with the looming SIGCOMM deadline and the HotNets stuff I still need to take care of, plus there's always GeoMAN... sometimes I just find myself to be stretched too thin to be of much use on any project.

Of course, there was a ray of sunshine tonight: my favorite current TV show, Dollhouse. Tonight's episode was quite good, and I have to say that Enver Gjokaj is a talented and adorable actor. I want to see him in some same-sex engagements! If the Dollhouse were real and I were filthy stinking rich, I'd hire him for all kinds of stuff.

Here's hoping Dollhouse stays on the air for the entire season at least! Poor Joss just can't catch a break on TV these days, even though he was born for the medium...

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.

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...

Out of my funk

Today was good. I managed to get up and go to the gym, and was able to burn 70% more calories than I was ever able to do before my diagnosis and treatment. I feel great in general, which makes me think my blood cell counts are starting to correct themselves.

I was totally lucid at work and even fairly productive. I almost finished the first draft of my Bond Breaker slides; this is the paper I will present at HotNets in New York on October 22nd or so. I'm looking forward to it, especially since I've never been to New York before.

It's time to start thinking about Sigcomm... something I've been dreading but that I think will be good for me. It looks like I'll probably be working on the iOwes paper with Dave, which is good, because I won't be the lead author (I don't know for sure that I could handle that right now) and because it's still very much related to OSNs, my area of research. I just hope I can handle the 80 hour work weeks that are to come in my not-too-distant future.

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...

Doctor's Appointment

Today was Thursday, and that means that it was time for an appointment. The appointments have been a little frustrating for me. Back in February my car died, so ever since then I've just used Zipcar to get around. This has worked very well for me; I can get to most places by foot, bus, or metro. However, I live in College Park, and the Greenebaum Cancer Center is up in Baltimore, about a 30-45 minute drive away.

It wouldn't be so bad to do with Zipcar, except Zipcar is pay-by-the-hour, and I spend a lot of hours at the GCC. My typical appointment goes like this. Someone in my family picks me up around 10 and I get to GCC about 15-30 minutes before my appointment time. I sign in, and then almost immediately get my vitals checked. Then I have to wait until my appointment time, at which time they draw some blood and tell me to wait in the other waiting room. And I wait, and wait, and wait, while they do a CBC (Complete Blood Count) test on my blood. Then I see my doctors, Dr. Singh and Dr. Rapoport, and they tell me that my blood counts are low but that that is to be expected. For a while, I would then have to go fill a prescription for Gleevec, but now that I've been approved for the patient assistance program the Gleevec is shipped directly to my house. Back when I had to wait for the prescription, I would be at GCC until 4:30, but now I'm "only" there until 3:00 or so.

The CBC is pretty interesting. I started out at 480 thousand white blood cells per millimeter cubed (which I will from now on denote as 480 WBC). They put me on Gleevec and Hydroxyurea (which is what most people think of when they think of chemotherapy), and that entire week at the hospital I dropped by about 50 WBC each day. I was at 70 WBC when they discharged me, and the next week I was in the normal range. Now I'm actually a little low, on white blood cells, red blood cells, platelets, you name it. Today they gave me a procrit shot to try to convince my body to make more red blood cells. Since my WBC is so low, they also gave me the flu shot and advised me to get the H1N1 shot when it becomes available.

Also today, we had a bit of a snafu. My brother came to the appointment with me, intending to get some blood drawn to test if he's a bone marrow match in case we decide to do a bone marrow transplant in the future. This of course confused the nurses --- they took his vitals, drew my blood --- in short they mixed up a lot of information and failed to take my vitals or draw his blood. They eventually corrected the mistake after Dr. Rapoport came into the room and jokingly mentioned that I had put on a little weight; at this point I told him that they never took my vitals, and then questioned how he believed the numbers he had in front of him. After all, I weigh about 150 pounds and my brother weighs 180, and I'd think it would be pretty unhealthy to put on 30 pounds in a week. In any case, we eventually got the matter sorted out. The thing I found so weird about it is that we knew there was some confusion, so we each checked the names on the sheets and they had Billy's name for the vitals and my name for the blood. Weird, huh?

Despite that eating up most of my day, I did manage to have a lot of good times today. In particular, I was one of the lucky "few" to get a Google Wave invite, and playing with that has been really fun. Though, Google Wave is all about collaboration, and my friend invites haven't taken effect yet, so there's not a lot to do with it yet. I did create a list of video games that I plan to purchase. I normally keep such a list in Gmail, and reply to the mail to update the list, so Google Wave really is exactly what I want for that. I will likely also move my "command line" folder to Google Wave, and probably share that with my friend Katrina as well. That folder is what I use to store useful command line calls that I would otherwise forget, and again, since I edit them and append to them, Google Wave seems like the perfect place.

Then, much later, I also managed to snag a PSP Go. I'm especially happy about this because NISA is having a 50% off deal on six of their games, five of which I plan to buy, this week only in honor of the Go's debut. Since I didn't own a PSP previously, the PSP Go is a great buy for me, especially now that I'm spending entire days at a time on the go waiting in GCC for my appointment with the doctors.

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.

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.

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...