Sunday, May 29, 2011
They made a movie about me!
Well not really, but the similarities to my situation are incredible: http://www.youtube.com/watch?v=jeh5YXotTTM
Tuesday, April 5, 2011
One year anniversary
I was first diagnosed with CML on April 1st, 2010 (I really wish the doctor had said "April Fools" afterwards..) I still remember that day quite well. I had been experiencing stomach pain for about a week, and had just met with a second doctor the day before (the first doctor at CMU diagnosed me with "mild constipation"). The second doctor thought it may have been an ulcer, and scheduled me to do an ultrasound (I think) and have a blood test.
So on April 1st, I went to the hospital and had the ultrasound/blood test. Around 5pm I got a call from the doctor; he said my white blood count was extremely high and I had to go to the ER. He didn't really seem especially panicked when he told me this, and I wasn't as worried as I probably should have been. I was actually playing a few poker tournaments at the time, and responded to him naively with something like "Is it ok if I go in half an hour, because I'm kind of busy right now?"
Anyway, my intro post tells the rest of the story. Suffice it to say that it has been an interesting year. I spent the first month in pretty intense pain from the botched bone marrow biopsy. I spent the next five months thinking I was basically cured. I spent the next two months panicked, knowing I was far from being cured. I spent the next month in pain at the hospital. And I spent the next three months in a bizarre state of recovery and isolation.
I don't actually have much to report about my health right now -- my recovery is continuing to go well and I'm feeling great. I do have a kind of funny story to tell though. My brother Ben (aka my bone marrow donor) decided to run in the Boston Marathon as part of the Dana Farber Challenge to help raise money for cancer research (I think he is actually a few hundred dollars short of his goal; here is the link if you are interested in donating).
Anyway, I guess he had to fill out an application form to do the challenge, and he wrote about our family's recent experiences relating to my transplant. Apparently his answers were compelling, and not only did he get a marathon slot, but someone from the media department at Dana Farber contacted him about doing some sort of promotional video based on his experiences.
About a week ago, I got an email from a media person (ironically named Dana) saying they were planning to send a camera crew to my apartment in a few days to film me and my brother playing wii tennis; I would have to wear a mask and gloves of course for the filming (I don't normally wear them, just when I'm around other people). I was all for supporting Dana Farber and a media appearance sounded interesting, but this proposal sounded very bizarre; I hadn't used the wii in several months, and I don't ordinarily wear my mask and gloves.
To make a long story short, you won't be seeing me on tv any time soon ... I decided I'm not desperate enough to play wii tennis with mask/gloves like a doofus just to get some airtime. I wouldn't be opposed to some sort of media appearance or story in the future though that displayed my experience in a more realistic light. I do think I have one of the more entertaining cancer blogs on the market ...
So on April 1st, I went to the hospital and had the ultrasound/blood test. Around 5pm I got a call from the doctor; he said my white blood count was extremely high and I had to go to the ER. He didn't really seem especially panicked when he told me this, and I wasn't as worried as I probably should have been. I was actually playing a few poker tournaments at the time, and responded to him naively with something like "Is it ok if I go in half an hour, because I'm kind of busy right now?"
Anyway, my intro post tells the rest of the story. Suffice it to say that it has been an interesting year. I spent the first month in pretty intense pain from the botched bone marrow biopsy. I spent the next five months thinking I was basically cured. I spent the next two months panicked, knowing I was far from being cured. I spent the next month in pain at the hospital. And I spent the next three months in a bizarre state of recovery and isolation.
I don't actually have much to report about my health right now -- my recovery is continuing to go well and I'm feeling great. I do have a kind of funny story to tell though. My brother Ben (aka my bone marrow donor) decided to run in the Boston Marathon as part of the Dana Farber Challenge to help raise money for cancer research (I think he is actually a few hundred dollars short of his goal; here is the link if you are interested in donating).
Anyway, I guess he had to fill out an application form to do the challenge, and he wrote about our family's recent experiences relating to my transplant. Apparently his answers were compelling, and not only did he get a marathon slot, but someone from the media department at Dana Farber contacted him about doing some sort of promotional video based on his experiences.
About a week ago, I got an email from a media person (ironically named Dana) saying they were planning to send a camera crew to my apartment in a few days to film me and my brother playing wii tennis; I would have to wear a mask and gloves of course for the filming (I don't normally wear them, just when I'm around other people). I was all for supporting Dana Farber and a media appearance sounded interesting, but this proposal sounded very bizarre; I hadn't used the wii in several months, and I don't ordinarily wear my mask and gloves.
To make a long story short, you won't be seeing me on tv any time soon ... I decided I'm not desperate enough to play wii tennis with mask/gloves like a doofus just to get some airtime. I wouldn't be opposed to some sort of media appearance or story in the future though that displayed my experience in a more realistic light. I do think I have one of the more entertaining cancer blogs on the market ...
Monday, March 7, 2011
Day 100!
On Friday I reached a big milestone -- the 100th day after my transplant. Most major complications occur during the first 100 days post-transplant, so it's a really good sign I've made it this far without any serious issues. Of course I am not totally safe yet, and I still have a high risk of getting an infection since my immune system is quite weak; so I still pretty much need to stay inside and avoid people until a full year after the transplant. I am feeling great though and very optimistic about my recovery now that I have made it this far.
On a more important note, I am now allowed to order delivery! I'll be honest, I've been getting a little sick of having the same frozen dinners every night (my mom insists on getting "Lean cuisines" no matter how much I object). Actually I'm exaggerating a little, and a lot of my meals have been pretty good. But I am definitely excited about being able to order out on occasion. We had pizza the first night, and there's a really good Thai place nearby with free delivery I'm thinking of ordering from next.
I was talking with my cousin the other day, and he asked me a good question: "how did this whole experience compare with my expectations?" In terms of the transplant itself and the time I was at the hospital, I would say it was quite different -- but not really better or worse -- than I expected. I knew there would be some painful side effects, but I didn't know I'd get a terrible sore throat and that the chemo would make all food taste disgusting (though fortunately my sense of taste is back now); I was instead expecting to get bad mouth sores (which I never got). I also didn't expect to lose 20 pounds (I've gained about 5 back).
In terms of the post-hospital experience, I would say it has been much better than I expected. Except for a minor issue that came up in December, it has pretty much been smooth sailing. I guess I was a bit out of it when I was on high doses of Prednisone, but the dosage tapered pretty quickly, and I stopped taking it completely a few days ago. Though I am stuck inside the apartment all day, I am still able to do many of the activities I enjoy, and even to exercise regularly! We ended up getting an elliptical machine for our apartment that works perfectly (the Schwinn 420); it is very high quality and also small enough to fit comfortably in our living room.
It has also been nice having this time off from school to collect my thoughts about various things going forward (e.g., thesis ideas and career/life goals). I definitely plan to get back into doing research more regularly at some point, but it's nice being able to devote some time to the big picture without any obligations at the moment. I have also been playing a decent amount of poker lately. I don't want to mention too much about my research or poker on this blog though, since I want to keep the real focus on my recovery experience. If you are interested, I also have another blog that is devoted to those (and other) topics here. In the future, maybe I'll look into combining both of these blogs if there is interest.
One final thing I want to say is that I know have portrayed some of my physicians in a bad light in some of my posts and have appeared cynical towards several aspects of the medical field. Well, I definitely don't take back any of the things I said, and I certainly got screwed over several times by some incompetent people. But for the most part I have a lot of respect for the medical field, and there have been a lot of great people involved whom I never really mentioned. Most importantly, my doctor here at Dana Farber -- Dr. Antin -- is one of the most experienced transplant doctors in the world, and was on top of every issue that came up. Every time I met with him or paged him, he seemed to immediately know what the issue was, how severe it was, and how to treat it. Most of the nurses and other physicians I encountered at Dana Farber (and some at UPMC) have been amazing also, and I was incredibly impressed at just how knowledgeable the nurses seemed to be on an extremely wide variety of topics (from chemo to blood transfusions to rashes to sleeping meds). So despite the impression I may have given, there are actually some positives in the medical field :)
On a more important note, I am now allowed to order delivery! I'll be honest, I've been getting a little sick of having the same frozen dinners every night (my mom insists on getting "Lean cuisines" no matter how much I object). Actually I'm exaggerating a little, and a lot of my meals have been pretty good. But I am definitely excited about being able to order out on occasion. We had pizza the first night, and there's a really good Thai place nearby with free delivery I'm thinking of ordering from next.
I was talking with my cousin the other day, and he asked me a good question: "how did this whole experience compare with my expectations?" In terms of the transplant itself and the time I was at the hospital, I would say it was quite different -- but not really better or worse -- than I expected. I knew there would be some painful side effects, but I didn't know I'd get a terrible sore throat and that the chemo would make all food taste disgusting (though fortunately my sense of taste is back now); I was instead expecting to get bad mouth sores (which I never got). I also didn't expect to lose 20 pounds (I've gained about 5 back).
In terms of the post-hospital experience, I would say it has been much better than I expected. Except for a minor issue that came up in December, it has pretty much been smooth sailing. I guess I was a bit out of it when I was on high doses of Prednisone, but the dosage tapered pretty quickly, and I stopped taking it completely a few days ago. Though I am stuck inside the apartment all day, I am still able to do many of the activities I enjoy, and even to exercise regularly! We ended up getting an elliptical machine for our apartment that works perfectly (the Schwinn 420); it is very high quality and also small enough to fit comfortably in our living room.
It has also been nice having this time off from school to collect my thoughts about various things going forward (e.g., thesis ideas and career/life goals). I definitely plan to get back into doing research more regularly at some point, but it's nice being able to devote some time to the big picture without any obligations at the moment. I have also been playing a decent amount of poker lately. I don't want to mention too much about my research or poker on this blog though, since I want to keep the real focus on my recovery experience. If you are interested, I also have another blog that is devoted to those (and other) topics here. In the future, maybe I'll look into combining both of these blogs if there is interest.
One final thing I want to say is that I know have portrayed some of my physicians in a bad light in some of my posts and have appeared cynical towards several aspects of the medical field. Well, I definitely don't take back any of the things I said, and I certainly got screwed over several times by some incompetent people. But for the most part I have a lot of respect for the medical field, and there have been a lot of great people involved whom I never really mentioned. Most importantly, my doctor here at Dana Farber -- Dr. Antin -- is one of the most experienced transplant doctors in the world, and was on top of every issue that came up. Every time I met with him or paged him, he seemed to immediately know what the issue was, how severe it was, and how to treat it. Most of the nurses and other physicians I encountered at Dana Farber (and some at UPMC) have been amazing also, and I was incredibly impressed at just how knowledgeable the nurses seemed to be on an extremely wide variety of topics (from chemo to blood transfusions to rashes to sleeping meds). So despite the impression I may have given, there are actually some positives in the medical field :)
Tuesday, February 15, 2011
Line's out
So a few weeks ago I had an interesting experience. I'm not sure if I mentioned it earlier, but when I was first admitted to the hospital in November the first thing they did was a procedure to insert Hickman lines (catheters) into both sides of my chest. Basically, the catheters made it a lot easier when they had to give me various medicines/transfusions and draw my blood. Apparently the procedure ended up being more complicated than usual and they ended up having to make 4 different incisions on the left side I think; but overall it was successful and the lines were inserted.
Right before I was discharged, the line in my right side was removed by a pretty straightforward procedure; I believe it was a surgeon who came into my room and removed it in about 10-15 minutes with no issues. The line in my left side stayed in after I left, mostly so my weekly blood draws would be easier (and also so they wouldn't have to redo the original procedure if there were issues and I was readmitted). Even though it was nice not having to be poked with a needle every week, it was still pretty annoying having to keep the catheter in; we had to clean it every day, and had to cover it with multiple layers every time I showered. So I was pretty happy when my doctor said it was finally time to take it out.
So I came into the hospital again a few weeks ago for the supposedly routine procedure. When my name was called, I was greeted by a fragile-looking physician's assistant (PA), and I was expecting her to ask me some preliminary questions and take me in to the surgeon. But surprisingly she turned to me and timidly said, "I'll be performing the procedure today." I was a little surprised, but I didn't think it was really a big deal since it was supposed to be a pretty straightforward procedure.
Right from the start, I could tell she was really timid and didn't have much confidence. A few minutes into the procedure she started with the standard small talk:
PA: Are you from around here?
Me: Nope, I go to grad school in Pittsburgh.
PA: What do you go to grad school for?
Me: I'm working on my PhD in computer science.
PA: Wow! I'm really clueless about computers!
I never really minded chatting with the nurses and most of them were really nice, although they kind of said the same thing. But this PA was especially awkward to talk to, plus she was making incisions into me and I'd really prefer she focused on the procedure. Is it too rude to say something like "I don't want to bore you, you probably need to focus on the procedure"?
Anyway, she was chiseling away for a while, so I finally asked "everything going ok?" She said, "yeah it's going ok. Sometimes when you've had the line in for a while it can get attached to you and be tougher to get out. It's totally standard and actually a good sign that you're doing well." Hmmm.
More time passed, and I could tell she was having some issues; it had been over 90 minutes at this point, and I really wanted to ask if someone else could take over for her. But I guess I thought that would be too rude, so instead I made a few nudging comments, sort of hoping she would voluntarily get someone else to take over. One of our conversations went something like this:
Me: Making any progress?
PA: Yes, things are progressing. I'm sort of working on a little tunnel!
Eventually after about two hours, she said she would call her partner to try to finish it. A few minutes later another PA came in, and I could immediately tell she would do a better job, mostly because she seemed much more confident. Anyway, she surveyed the damage, and finished taking the line out in about 15 minutes. I told her I wished she had started the operation instead of the other PA, and she said, "thanks, yeah the other PA should have gotten me like an hour ago." When I told my doctor about the episode the next week, he said the same thing (that the original PA should have gotten help much sooner).
Fortunately, the line was eventually removed, and the wound healed; now it's just one of several minor scars I'll have for a little while. In hindsight it wasn't that big a deal; just a minor operation that took a bit longer than it should have. It was not even close to the epic bone marrow biopsy fiasco of April '10, which I mentioned in my intro post. But I do think it brings to light some important issues, and I do regret some of the things I said/didn't say.
The main point is that you can't be afraid to be an asshole sometimes, especially when your health is on the line. I'll be the misanthrope who refuses to chit chat if I think it will help them focus better. I honestly don't believe I didn't say "Do you have a supervisor or someone else who could take over?" That doesn't even seem that rude really, especially if they've clearly been struggling. From a legal perspective, I believe I'm entitled to request for someone else to finish a procedure anyway if I feel the person performing it is unfit.
Incidentally, the person who f'd up my bone marrow biopsy and the initial PA from this incident both had the same last name (and it's not even a very common last name). Coincidence?
ps, my recovery is going well overall, and I'll try to do a more general update soon.
Right before I was discharged, the line in my right side was removed by a pretty straightforward procedure; I believe it was a surgeon who came into my room and removed it in about 10-15 minutes with no issues. The line in my left side stayed in after I left, mostly so my weekly blood draws would be easier (and also so they wouldn't have to redo the original procedure if there were issues and I was readmitted). Even though it was nice not having to be poked with a needle every week, it was still pretty annoying having to keep the catheter in; we had to clean it every day, and had to cover it with multiple layers every time I showered. So I was pretty happy when my doctor said it was finally time to take it out.
So I came into the hospital again a few weeks ago for the supposedly routine procedure. When my name was called, I was greeted by a fragile-looking physician's assistant (PA), and I was expecting her to ask me some preliminary questions and take me in to the surgeon. But surprisingly she turned to me and timidly said, "I'll be performing the procedure today." I was a little surprised, but I didn't think it was really a big deal since it was supposed to be a pretty straightforward procedure.
Right from the start, I could tell she was really timid and didn't have much confidence. A few minutes into the procedure she started with the standard small talk:
PA: Are you from around here?
Me: Nope, I go to grad school in Pittsburgh.
PA: What do you go to grad school for?
Me: I'm working on my PhD in computer science.
PA: Wow! I'm really clueless about computers!
I never really minded chatting with the nurses and most of them were really nice, although they kind of said the same thing. But this PA was especially awkward to talk to, plus she was making incisions into me and I'd really prefer she focused on the procedure. Is it too rude to say something like "I don't want to bore you, you probably need to focus on the procedure"?
Anyway, she was chiseling away for a while, so I finally asked "everything going ok?" She said, "yeah it's going ok. Sometimes when you've had the line in for a while it can get attached to you and be tougher to get out. It's totally standard and actually a good sign that you're doing well." Hmmm.
More time passed, and I could tell she was having some issues; it had been over 90 minutes at this point, and I really wanted to ask if someone else could take over for her. But I guess I thought that would be too rude, so instead I made a few nudging comments, sort of hoping she would voluntarily get someone else to take over. One of our conversations went something like this:
Me: Making any progress?
PA: Yes, things are progressing. I'm sort of working on a little tunnel!
Eventually after about two hours, she said she would call her partner to try to finish it. A few minutes later another PA came in, and I could immediately tell she would do a better job, mostly because she seemed much more confident. Anyway, she surveyed the damage, and finished taking the line out in about 15 minutes. I told her I wished she had started the operation instead of the other PA, and she said, "thanks, yeah the other PA should have gotten me like an hour ago." When I told my doctor about the episode the next week, he said the same thing (that the original PA should have gotten help much sooner).
Fortunately, the line was eventually removed, and the wound healed; now it's just one of several minor scars I'll have for a little while. In hindsight it wasn't that big a deal; just a minor operation that took a bit longer than it should have. It was not even close to the epic bone marrow biopsy fiasco of April '10, which I mentioned in my intro post. But I do think it brings to light some important issues, and I do regret some of the things I said/didn't say.
The main point is that you can't be afraid to be an asshole sometimes, especially when your health is on the line. I'll be the misanthrope who refuses to chit chat if I think it will help them focus better. I honestly don't believe I didn't say "Do you have a supervisor or someone else who could take over?" That doesn't even seem that rude really, especially if they've clearly been struggling. From a legal perspective, I believe I'm entitled to request for someone else to finish a procedure anyway if I feel the person performing it is unfit.
Incidentally, the person who f'd up my bone marrow biopsy and the initial PA from this incident both had the same last name (and it's not even a very common last name). Coincidence?
ps, my recovery is going well overall, and I'll try to do a more general update soon.
Thursday, December 30, 2010
Brief readmission ... and more
It's been a roller coaster last few weeks, but I'm happy to say I'm doing well at the moment. I was discharged from the hospital on the 14th, but unfortunately had to get readmitted again on the 23rd due to a pretty bad rash and a fever. My doctor said it was due to graft vs. host disease (GVHD), in which my transplanted stem cells recognize some of my cells as foreign and attack them. (There are also some beneficial effects of GVHD as well, such as killing off residual leukemia cells. So some GVHD is a good thing, since it decreases my chance of a relapse.) Fortunately we caught it pretty early, and my doctor said it hadn't gotten too severe yet. He started me on a pretty hardcore drug that has tons of side effects, but has been very effective so far in treating my GVHD. I was discharged on the 26th, and have been feeling pretty good for the last couple days.
So I spent Thanksgiving and Christmas in the hospital: but fortunately it's looking like I won't have to pull the trifecta and can spend New Year's at home! Christmas was pretty good actually -- they gave a ton of gifts to the patients on my floor, including a red sox blanket, several patriots' shirts, and a scarf. I don't even celebrate Christmas, so this was a lot more gifts than I usually get :)
The main drug that they're using to treat my GVHD is called Prednisone. While it is known for being quite effective and is the only real treatment available for GVHD, it is also notorious for its side effects. From what I've been told, the main effects seem to be increased appetite/weight gain, facial swelling, insomnia, and psychological effects like anxiety/depression/mania. I have started to notice the increased appetite and insomnia already; other than that I think it's just made me kind of wired and hyper in general. I'll be on it for several months, but I think they start tapering the doses in a few weeks, so hopefully the side effects don't end up getting too severe.
With all the new medications I'm on now, my morning routine now consists of waking up and taking 18 pills and 2 liquids. Fun times! I also take some of the meds again later in the day. I guess a bunch of them are due to some of the research studies I decided to do. For the main study, I was randomly (50/50) assigned to either a drug that might help the Prednisone in treating GVHD, or a placebo. It's sort of double-blind actually in that the doctors don't know which medicine it is either, only the researchers do. This involves taking 4 pills 3 times a day and also doing some additional blood tests, which is kind of annoying, but I thought it was a good decision to participate in these studies. Basically it seems like the studies allow you to take drugs that top doctors have good reason to think will help in the treatment, but they just haven't been studied well enough to be sure yet. It seems pretty +EV to try to get these medicines that will probably help. One of the nurses thinks I probably got the real medicine since my rash improved so quickly.
Like I mentioned earlier, my appetite has definitely been up the last few days due to the Prednisone. My foods of choice lately have been fries and ice cream -- specifically sweet potato fries, and peanut butter ice cream with caramel sauce. It's a little funny because I first thought the medicine was pronounced "pregnazone," and my mom had noted some similarities between my eating habits and those of pregnant women. Fortunately I lost around 16 lbs in the hospital, so I can afford to gain a bit of weight back, which I'm sure I will in the next few weeks.
Exercise is another topic I've been thinking alot about lately. I'd like to/I'm supposed to do something physical every day for about 30 mins. However, the main restriction is that I can't really be around other people, and I need to wear a mask/gloves when I leave my apartment. A few options we've thrown around are:
a) put on a mask/gloves and just walk back and forth down the corridor in the apt. building. I've tried this and it's pretty boring, plus I get mean looks from everyone who walks by. It's actually kind of ironic: people assume that people who wear medical masks are sick/contagious and should be avoided. However, in reality the people with the masks are not contagious and are actually trying to stay extra clean by avoiding germs.
b) Go to the building fitness center during a late hour when no one else would be there (like midnight or so). The main issue here is that if someone is there or comes in while I'm working out, then I have to leave. While the fitness center is pretty good, this seems like too annoying of a system.
c) We recently bought Nintendo Wii for our apartment, which has a variety of sports and exercise games. I've played the tennis game a bunch of times, which is pretty fun though it's not much exercise. My dad has been totally hooked on the fitness games though -- doing the obstacle course, hula hoops, balance beam, etc. I haven't really tried this stuff yet, but he seems to really enjoy it and seems to be getting quite a good workout.
d) Buy an elliptical machine for our apartment. I've mostly been a treadmill person myself, but several of my friends said elliptical machines are really good too, and are generally smaller than treadmills. We don't have a ton of space in our apt, so couldn't fit a huge machine. But it looks like there is a pretty huge range in the size (and price) of ellipticals, and we could definitely fit a pretty small one. Let me know if you have suggestions for good places to look, or know of a good ellpical system that is small but reliable.
Pokerwise, I made SNE several days ago, which I actually wouldn't consider that big of an achievement except for the fact that I had to grind out about 100k vpps from the hospital this month. I only had my laptop and there were pretty frequent interruptions, so I didn't play very many tables at a time. It ended up not being that big a deal actually, as poker was kind of all I felt like doing in the hospital and it made the days go by faster.
In terms of school, I recently got some good news -- two of my papers that I submitted to a conference back in October were accepted. My main paper was on a new game-theory based approach to opponent modeling. I'm really happy this paper got in, because I think it's a pretty cool idea for combining game-theoretic and learning/opponent exploitation ideas into a practical algorithm that leads to empirical performance improvements in poker. I'll try to post copies of this and my other paper shortly on my website. The conference will be in Taipei in May and should be really exciting; but unfortunately I doubt I'll be able to travel very far in the next few months. I guess my advisor will have to give the presentations for me.
Even if I can't travel to Taiwan or to Vegas for the WSOP, I still think I'd like to put together some kind of fun trip before I return to CMU, whenever that is. I'll have to see how this GVHD goes and what my doctor says, since it's not really clear yet how long the full recovery process will take. But for the next few months at least, I'm living in Boston in the apartment with my parents. I should probably see how things go for the next few weeks, but eventually I'd be happy to have friends stop by.
So I spent Thanksgiving and Christmas in the hospital: but fortunately it's looking like I won't have to pull the trifecta and can spend New Year's at home! Christmas was pretty good actually -- they gave a ton of gifts to the patients on my floor, including a red sox blanket, several patriots' shirts, and a scarf. I don't even celebrate Christmas, so this was a lot more gifts than I usually get :)
The main drug that they're using to treat my GVHD is called Prednisone. While it is known for being quite effective and is the only real treatment available for GVHD, it is also notorious for its side effects. From what I've been told, the main effects seem to be increased appetite/weight gain, facial swelling, insomnia, and psychological effects like anxiety/depression/mania. I have started to notice the increased appetite and insomnia already; other than that I think it's just made me kind of wired and hyper in general. I'll be on it for several months, but I think they start tapering the doses in a few weeks, so hopefully the side effects don't end up getting too severe.
With all the new medications I'm on now, my morning routine now consists of waking up and taking 18 pills and 2 liquids. Fun times! I also take some of the meds again later in the day. I guess a bunch of them are due to some of the research studies I decided to do. For the main study, I was randomly (50/50) assigned to either a drug that might help the Prednisone in treating GVHD, or a placebo. It's sort of double-blind actually in that the doctors don't know which medicine it is either, only the researchers do. This involves taking 4 pills 3 times a day and also doing some additional blood tests, which is kind of annoying, but I thought it was a good decision to participate in these studies. Basically it seems like the studies allow you to take drugs that top doctors have good reason to think will help in the treatment, but they just haven't been studied well enough to be sure yet. It seems pretty +EV to try to get these medicines that will probably help. One of the nurses thinks I probably got the real medicine since my rash improved so quickly.
Like I mentioned earlier, my appetite has definitely been up the last few days due to the Prednisone. My foods of choice lately have been fries and ice cream -- specifically sweet potato fries, and peanut butter ice cream with caramel sauce. It's a little funny because I first thought the medicine was pronounced "pregnazone," and my mom had noted some similarities between my eating habits and those of pregnant women. Fortunately I lost around 16 lbs in the hospital, so I can afford to gain a bit of weight back, which I'm sure I will in the next few weeks.
Exercise is another topic I've been thinking alot about lately. I'd like to/I'm supposed to do something physical every day for about 30 mins. However, the main restriction is that I can't really be around other people, and I need to wear a mask/gloves when I leave my apartment. A few options we've thrown around are:
a) put on a mask/gloves and just walk back and forth down the corridor in the apt. building. I've tried this and it's pretty boring, plus I get mean looks from everyone who walks by. It's actually kind of ironic: people assume that people who wear medical masks are sick/contagious and should be avoided. However, in reality the people with the masks are not contagious and are actually trying to stay extra clean by avoiding germs.
b) Go to the building fitness center during a late hour when no one else would be there (like midnight or so). The main issue here is that if someone is there or comes in while I'm working out, then I have to leave. While the fitness center is pretty good, this seems like too annoying of a system.
c) We recently bought Nintendo Wii for our apartment, which has a variety of sports and exercise games. I've played the tennis game a bunch of times, which is pretty fun though it's not much exercise. My dad has been totally hooked on the fitness games though -- doing the obstacle course, hula hoops, balance beam, etc. I haven't really tried this stuff yet, but he seems to really enjoy it and seems to be getting quite a good workout.
d) Buy an elliptical machine for our apartment. I've mostly been a treadmill person myself, but several of my friends said elliptical machines are really good too, and are generally smaller than treadmills. We don't have a ton of space in our apt, so couldn't fit a huge machine. But it looks like there is a pretty huge range in the size (and price) of ellipticals, and we could definitely fit a pretty small one. Let me know if you have suggestions for good places to look, or know of a good ellpical system that is small but reliable.
Pokerwise, I made SNE several days ago, which I actually wouldn't consider that big of an achievement except for the fact that I had to grind out about 100k vpps from the hospital this month. I only had my laptop and there were pretty frequent interruptions, so I didn't play very many tables at a time. It ended up not being that big a deal actually, as poker was kind of all I felt like doing in the hospital and it made the days go by faster.
In terms of school, I recently got some good news -- two of my papers that I submitted to a conference back in October were accepted. My main paper was on a new game-theory based approach to opponent modeling. I'm really happy this paper got in, because I think it's a pretty cool idea for combining game-theoretic and learning/opponent exploitation ideas into a practical algorithm that leads to empirical performance improvements in poker. I'll try to post copies of this and my other paper shortly on my website. The conference will be in Taipei in May and should be really exciting; but unfortunately I doubt I'll be able to travel very far in the next few months. I guess my advisor will have to give the presentations for me.
Even if I can't travel to Taiwan or to Vegas for the WSOP, I still think I'd like to put together some kind of fun trip before I return to CMU, whenever that is. I'll have to see how this GVHD goes and what my doctor says, since it's not really clear yet how long the full recovery process will take. But for the next few months at least, I'm living in Boston in the apartment with my parents. I should probably see how things go for the next few weeks, but eventually I'd be happy to have friends stop by.
Monday, December 13, 2010
Finally some good news!
So it's looking like I'm finally getting out of the hospital in a day or two! It was pretty rough for a while, but most of my pain is gone and my blood counts have been moving up steadily for the last few days. Even though I felt like total crap for most of my stay, I think most BMT (bone marrow transplant) patients have a much harder time than I did and end up staying in the hospital several weeks longer. So I guess I was pretty fortunate in that regard.
The worst part of my stay was definitely what I like to call the Sore Throat From Hell (STFH). I had it for about two weeks, and not only did it hurt every time I swallowed, but it made eating so painful that I was basically on a liquid diet for most of the time. During the reign of the STFH, my daily food intake consisted solely of milkshakes and gatorade. I managed to avoid the "mouth sores" though, which can apparently be even worse than the STFH.
In addition to the STFH, I also developed a gross "metallic" taste in my mouth that never went away and made all food and drinks taste disgusting (apparently this is a totally standard side effect of chemo). They say it will probably go away in a few weeks, but even now that my throat has recovered eating still kind of sucks since everything tastes so gross (not too surprisingly, I ended up losing about 15 pounds in the hospital). I was talking with one of my nurses about this, and what she said definitely scared me a little. Apparently her bf/husband used to love fish before he got his BMT 7 yrs ago; but ever since his transplant, the sight of fish has made him throw up. So I guess this chemo can actually have long-term effects on my sense of taste.
Also, my hair started falling out eventually, so I decided to get an actual "shaved head." It actually looks much better than I was expecting; maybe I'll post a pic in my next post.
Now for a couple observations/interesting stories from my stay. In order to measure pain and determine how much pain medication to give, the hospital uses a sophisticated system: they ask the patient how much pain he is experiencing on a scale of 0-10. So being stupidly rational about it, I tried to figure out exactly where my pain fell with respect to 0 being no pain and 10 being the maximal possible pain. As bad as the STFH was, it clearly seemed a lot closer to a 0 than to the maximal pain possible (which I imagined would be some horrible sharp shooting pain that made me scream nonstop). So I generally said my pain was around a 3, which I think is pretty accurate. Eventually, one of the nurses became a little skeptical and asked if I was sure it was only a 3? Finally it occurred to me that even though a 3 was probably the truthful rating, most people would probably rate the same pain at a 7/8. So I said my pain was probably higher than a 3, and that my scale was just on the conservative side. A light bulb immediately went off in her head, and she said "I think I know exactly how to fix this!" She came back in with a chart that "precisely" explained their pain system. The chart had a little picture of a "face" next to the numbers from 0-10 along with a verbal description. Next to 0 was a face with a big smile and caption "no pain." As the numbers increased, the face gradually started frowning: a pain of 6 had a medium frown which apparently "hurt even more" than a 5. Thankfully this rigorous chart really clarified everything for me, and I can confidently say that my pain was in fact a 7!
Some of the nurses and doctors were very chatty: here are a couple highlights. Every morning at 8am, a group of 4-5 doctors would come around and examine me. Usually they'd say I looked fine/my progress was normal, and I'd just fall back to sleep. Sometimes though, they'd try to be friendly and strike up a conversation. One day a doctor noticed one of my bags which I got at a conference last summer; he looked at me and asked "what exactly is the Second Brazilian Workshop on the Game Theory Society? Can you explain game theory in layman's terms?" I was clearly half-asleep and totally out of it from all my medications, and just remember giving him a blank stare and thinking "are you f'ing kidding me?" I guess I mentioned something about poker in my response, which prompted 15 more minutes of questions. Oops. Of course they were just trying to be nice and I can't really fault them for that, but ugh 8am is too early.
Here is a conversation I had with a nurse on another occasion:
Nurse: Where are you from?
Me: I'm a grad student in Pittsburgh right now.
Nurse: Wow really? What brings you to this area??
Me: Ummm, my bone marrow transplant.
Nurse: Oh.
In other news, Pokerstars apologized for their earlier email, though the reply was essentially identical. Fortunately, poker has actually proven to be a great hospital activity, and I've been playing a ton anyway. So I guess I'll get SNE with no problem, though for the record I'm still pretty upset with how Pokerstars handled the situation.
I haven't felt like doing much research/work for school from the hospital, but I'm looking forward to getting back to it soon once I'm released. I hear back in a few days about 2 papers I submitted to a conference, so hopefully I get some good news.
As to the overall progress of my condition, obviously it's great that I've made it this far and am doing so well; however, there is still a long way to go. I still need to avoid complications relating to infection and graft vs. host disease, which are relatively common unfortunately. So it's still too early to say my treatment has "worked," though the doctors seem optimistic.
Like I said earlier, I'm expecting to get released in the next day or two. Once I'm released, I'll be living in an apartment with my parents in Boston for the next 6-12 months. It sounds like I will still have a lot of medication to take, and will have to make frequent visits back to the hospital as an outpatient. I think I will also have to avoid "crowds," and basically not go out at all. The apartment is really nice though, and I'm just happy to be feeling better and on my way towards recovering. Hopefully I can have a productive year as well. Visitors are always welcome, and definitely let me know if you'll be in the area and want to stop by.
The worst part of my stay was definitely what I like to call the Sore Throat From Hell (STFH). I had it for about two weeks, and not only did it hurt every time I swallowed, but it made eating so painful that I was basically on a liquid diet for most of the time. During the reign of the STFH, my daily food intake consisted solely of milkshakes and gatorade. I managed to avoid the "mouth sores" though, which can apparently be even worse than the STFH.
In addition to the STFH, I also developed a gross "metallic" taste in my mouth that never went away and made all food and drinks taste disgusting (apparently this is a totally standard side effect of chemo). They say it will probably go away in a few weeks, but even now that my throat has recovered eating still kind of sucks since everything tastes so gross (not too surprisingly, I ended up losing about 15 pounds in the hospital). I was talking with one of my nurses about this, and what she said definitely scared me a little. Apparently her bf/husband used to love fish before he got his BMT 7 yrs ago; but ever since his transplant, the sight of fish has made him throw up. So I guess this chemo can actually have long-term effects on my sense of taste.
Also, my hair started falling out eventually, so I decided to get an actual "shaved head." It actually looks much better than I was expecting; maybe I'll post a pic in my next post.
Now for a couple observations/interesting stories from my stay. In order to measure pain and determine how much pain medication to give, the hospital uses a sophisticated system: they ask the patient how much pain he is experiencing on a scale of 0-10. So being stupidly rational about it, I tried to figure out exactly where my pain fell with respect to 0 being no pain and 10 being the maximal possible pain. As bad as the STFH was, it clearly seemed a lot closer to a 0 than to the maximal pain possible (which I imagined would be some horrible sharp shooting pain that made me scream nonstop). So I generally said my pain was around a 3, which I think is pretty accurate. Eventually, one of the nurses became a little skeptical and asked if I was sure it was only a 3? Finally it occurred to me that even though a 3 was probably the truthful rating, most people would probably rate the same pain at a 7/8. So I said my pain was probably higher than a 3, and that my scale was just on the conservative side. A light bulb immediately went off in her head, and she said "I think I know exactly how to fix this!" She came back in with a chart that "precisely" explained their pain system. The chart had a little picture of a "face" next to the numbers from 0-10 along with a verbal description. Next to 0 was a face with a big smile and caption "no pain." As the numbers increased, the face gradually started frowning: a pain of 6 had a medium frown which apparently "hurt even more" than a 5. Thankfully this rigorous chart really clarified everything for me, and I can confidently say that my pain was in fact a 7!
Some of the nurses and doctors were very chatty: here are a couple highlights. Every morning at 8am, a group of 4-5 doctors would come around and examine me. Usually they'd say I looked fine/my progress was normal, and I'd just fall back to sleep. Sometimes though, they'd try to be friendly and strike up a conversation. One day a doctor noticed one of my bags which I got at a conference last summer; he looked at me and asked "what exactly is the Second Brazilian Workshop on the Game Theory Society? Can you explain game theory in layman's terms?" I was clearly half-asleep and totally out of it from all my medications, and just remember giving him a blank stare and thinking "are you f'ing kidding me?" I guess I mentioned something about poker in my response, which prompted 15 more minutes of questions. Oops. Of course they were just trying to be nice and I can't really fault them for that, but ugh 8am is too early.
Here is a conversation I had with a nurse on another occasion:
Nurse: Where are you from?
Me: I'm a grad student in Pittsburgh right now.
Nurse: Wow really? What brings you to this area??
Me: Ummm, my bone marrow transplant.
Nurse: Oh.
In other news, Pokerstars apologized for their earlier email, though the reply was essentially identical. Fortunately, poker has actually proven to be a great hospital activity, and I've been playing a ton anyway. So I guess I'll get SNE with no problem, though for the record I'm still pretty upset with how Pokerstars handled the situation.
I haven't felt like doing much research/work for school from the hospital, but I'm looking forward to getting back to it soon once I'm released. I hear back in a few days about 2 papers I submitted to a conference, so hopefully I get some good news.
As to the overall progress of my condition, obviously it's great that I've made it this far and am doing so well; however, there is still a long way to go. I still need to avoid complications relating to infection and graft vs. host disease, which are relatively common unfortunately. So it's still too early to say my treatment has "worked," though the doctors seem optimistic.
Like I said earlier, I'm expecting to get released in the next day or two. Once I'm released, I'll be living in an apartment with my parents in Boston for the next 6-12 months. It sounds like I will still have a lot of medication to take, and will have to make frequent visits back to the hospital as an outpatient. I think I will also have to avoid "crowds," and basically not go out at all. The apartment is really nice though, and I'm just happy to be feeling better and on my way towards recovering. Hopefully I can have a productive year as well. Visitors are always welcome, and definitely let me know if you'll be in the area and want to stop by.
Friday, November 26, 2010
Update
First off, thanks for all the comments and support so far. I especially want to thank my family, who has been amazingly helpful. Obviously my brother has played a crucial role in my treatment by donating his bone marrow to me, even though it meant going through a painful procedure. My dad has also been really helpful, and among other things has relocated to Boston to be nearby and is working remotely. And last but not least, I don't even know where I'd be without everything my mom has done in the last several weeks, between scheduling tons of doctor visits, organizing all my information, setting up our apartment in Boston, and just everyday stuff like driving me around and cooking meals. I also want to thank all my friends who have made it much easier to get through everything so far.
In terms of my treatment, it hasn't been very pretty, but things are going well so far. I'm all finished with the chemo, radiation, and transplant, and am just waiting to see how my body responds to everything. Surprisingly, the chemo and transplant weren't really that climactic -- they were just injections through my tube. The chemo took 1 hour (x2), and the transplant itself just took 20 minutes.
I've already had quite a few side effects, including nausea and diarrhea, though those are under control at the moment and I feel pretty good. Unfortunately the worst side effects are probably still to come though, since apparently there is a delay between the chemo/radiation and the major side effects. The most painful side effect that is pretty common is getting tons of sores in my mouth/throat, so hopefully I run well and don't get those.
The radiation procedure was a little more elaborate than the chemo and transplant. Basically I had to do 7 20-minute sessions where I laid down on a machine and got zapped. It wasn't painful at all, but it did get kind of boring just lying in place for 20 minutes. They let you bring an MP3 player to listen to music during it if you want. So I brought mine with me, expecting to just listen to it by myself on my earphones. However, when I got there they told me I couldn't bring it on the machine with me, but that they would blast my music on the loudspeaker while I was on the machine. Of course, my playlist was super-embarrassing, with a lot of Britney Spears/Lady Gaga/etc songs, and it was pretty funny seeing the reactions of the nurse and the radiation guy.
In terms of poker, I've been able to play a little from the hospital, though I don't have the best setup here and haven't been able to play that many tables. I emailed Pokerstars explaining my situation hoping for some sort of break on the Supernova Elite chase, as discussed in my last post. Here was their response:
Hello Sam,
Sorry for the delay in providing a response to you.
We are really sad to hear about your ill health and how it has impacted your ability to attain SuperNova Elite status again for 2011. We appreciate that a positive way to combat serious illness is to set long term goals, as your condition has been ongoing since April, we believe you should have considered that your illness may prevent you reaching SuperNova Elite.
You have received the benefits from your SuperNova Elite status up to September 2010 and will be Supernova until at least end of February 2011.
Unfortunately, We are unable to help you at this time. We wish you a full recovery and hope you continue to play on PokerStars and are well enough to take up the challenge again in 2011.
Regards,
Gareth
PokerStars VIP Team
So basically they weren't understanding at all, and I was supposed to be able to predict that I'd develop an extremely unlikely mutation and need to get a transplant. It's pretty frustrating, but I guess I'll still try to get SNE if I feel like it, and if I don't then maybe I'll just switch to Full Tilt next year. Maybe if some of my poker friends reading this send Pokerstars an email on my behalf that will get them to give me some sort of break.
In terms of my treatment, it hasn't been very pretty, but things are going well so far. I'm all finished with the chemo, radiation, and transplant, and am just waiting to see how my body responds to everything. Surprisingly, the chemo and transplant weren't really that climactic -- they were just injections through my tube. The chemo took 1 hour (x2), and the transplant itself just took 20 minutes.
I've already had quite a few side effects, including nausea and diarrhea, though those are under control at the moment and I feel pretty good. Unfortunately the worst side effects are probably still to come though, since apparently there is a delay between the chemo/radiation and the major side effects. The most painful side effect that is pretty common is getting tons of sores in my mouth/throat, so hopefully I run well and don't get those.
The radiation procedure was a little more elaborate than the chemo and transplant. Basically I had to do 7 20-minute sessions where I laid down on a machine and got zapped. It wasn't painful at all, but it did get kind of boring just lying in place for 20 minutes. They let you bring an MP3 player to listen to music during it if you want. So I brought mine with me, expecting to just listen to it by myself on my earphones. However, when I got there they told me I couldn't bring it on the machine with me, but that they would blast my music on the loudspeaker while I was on the machine. Of course, my playlist was super-embarrassing, with a lot of Britney Spears/Lady Gaga/etc songs, and it was pretty funny seeing the reactions of the nurse and the radiation guy.
In terms of poker, I've been able to play a little from the hospital, though I don't have the best setup here and haven't been able to play that many tables. I emailed Pokerstars explaining my situation hoping for some sort of break on the Supernova Elite chase, as discussed in my last post. Here was their response:
Hello Sam,
Sorry for the delay in providing a response to you.
We are really sad to hear about your ill health and how it has impacted your ability to attain SuperNova Elite status again for 2011. We appreciate that a positive way to combat serious illness is to set long term goals, as your condition has been ongoing since April, we believe you should have considered that your illness may prevent you reaching SuperNova Elite.
You have received the benefits from your SuperNova Elite status up to September 2010 and will be Supernova until at least end of February 2011.
Unfortunately, We are unable to help you at this time. We wish you a full recovery and hope you continue to play on PokerStars and are well enough to take up the challenge again in 2011.
Regards,
Gareth
PokerStars VIP Team
So basically they weren't understanding at all, and I was supposed to be able to predict that I'd develop an extremely unlikely mutation and need to get a transplant. It's pretty frustrating, but I guess I'll still try to get SNE if I feel like it, and if I don't then maybe I'll just switch to Full Tilt next year. Maybe if some of my poker friends reading this send Pokerstars an email on my behalf that will get them to give me some sort of break.
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