I got the results from my CT scan. My GI tract has healed; I could have told you this because my bowel movements have been nice and solid recently. Unfortunately, the CT scan also revealed that my spleen is growing again. This could be a sign that the leukemia is coming back, so the doctor decided to do yet another bone marrow biopsy. Unfortunately, the doctor either didn't care how or didn't know how to make the bone marrow biopsy as painless as possible; it really seemed like he wasn't even trying. It was hands down the most painful thing I've ever experienced, though gout still reigns supreme as being the most painful for the longest amount of time.
In any case, depending on the bone marrow biopsy, I'm not sure what's going to happen. The doctor said that there's a chance they might remove my spleen. Apparently the spleen acts as a sponge for blood cells, so my enlarged spleen is part of the explanation for why I've been needing platelets and white blood cells recently. Removing the spleen would help with this, and I guess the liver will pick up the slack, according to the doctor. Still, I hesitate when the doctor suggests removing an organ; it sounds like such a permanent solution to what could be a temporary problem.
Naturally, Mom and Dad are freaking out about this. What's worse, they're telling other people. They don't understand that it's not unusual for leukemia patients to have their spleens removed, so they think this is much more serious than it is, and they've convinced everyone else that that's the case too. That brings us to the party. I got to see most of my family on Saturday at a huge pre-wedding party for my brother Bobby and his fiancé Hillary. Everyone expressed that they were concerned for me and that they were praying for me. Most of the family started out by saying that they heard that I got some bad news recently. I had to repeat about twenty times that things were going well and that it really was just some routine tests.
And really, things are going very well. I feel great. I went in to work three of the five days this past week since I was at the hospital the other two days. I got myself organized, including upgrading to Ubuntu 10.4 on my work, home, and laptop computers -- I have to say that I am quite pleased with it, though they need to fix some of the bugs with Gwibber. I started working on my proposal document, and I have about 8 pages there so far, though a good chunk of that is basically lifted from the Persona paper and needs to be condensed. All in all, I feel great, I'm being productive, and I'm happy. I don't think I could ask for more than that.
Oh, and even better news: because my GI tract is good now and because there's the concern that the leukemia could be coming back, the doctor dropped my steroid dosage drastically and continuously. I'm nearly off the steroids at this point, and today is the first day in a long time that I've actually eaten roughly like a normal person. I'm still a little hungry, but for a change I don't feel that I need to eat. As far as I'm concerned, that's victory.
Showing posts with label work. Show all posts
Showing posts with label work. Show all posts
Sunday, June 20, 2010
Tuesday, December 01, 2009
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.
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.
Tuesday, November 24, 2009
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).
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).
Sunday, October 25, 2009
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:
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.
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.
Thursday, October 15, 2009
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.
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.
Sunday, October 11, 2009
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...
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...
Friday, October 09, 2009
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...
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...
Wednesday, October 07, 2009
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.
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.
Monday, October 05, 2009
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.
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.
Saturday, October 03, 2009
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...
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...
Wednesday, September 30, 2009
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.
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.
 |  |
| 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.
Sunday, September 27, 2009
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!
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. :)
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. :)
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