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...
Showing posts with label exercise. Show all posts
Showing posts with label exercise. Show all posts
Sunday, October 11, 2009
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.
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.
Monday, September 28, 2009
I've Got Mail!
Today my labmate, Cristian, defended his dissertation. I've been working with him for several years, and in fact I'm a co-author on many of his papers, so I really would have loved to have been there for his defense. Instead, I was stuck at home waiting for the delivery man to deliver my Gleevec.
Here's the deal with Gleevec. It's actually really expensive at $100 per pill or so, and I, thinking I was a relatively healthy 26 year old, decided not to purchase prescription insurance. Fortunately for me, Novartis, the company that makes Gleevec, has a program for people exactly like me: less than 5 times the poverty level, less than $75,000 in savings, and no prescription insurance. I am incredibly thankful that they actually give me the pills for free! It's funny; I would be paying much more if I actually had prescription insurance.
In any case, I was approved for this program on Friday. Until today, I had been living off of medication the doctors gave to me at the hospital, and I could tell that they were running out of options for getting me deals on it. Today the delivery man delivered a month's worth of Gleevec. To my surprise, he also delivered something I ordered last week, a new pill box!
I'm really pleased with it! I figured that since I'd be on pills for the rest of my life, I might as well have a convenient way of carrying them. I wish it were a tiny bit smaller, so that it would fit into my change pocket, but I really can't complain.
Fortunately, my deliveries arrived in time for me to catch up with the lab before they went out to lunch. On my way to the lab, I ran for a few minutes in order to catch the bus. As I was running, I suddenly felt a pain in my chest, and at first I thought it was my heart. My heart was pounding, way harder than it usually does when I'm exercising. But I eventually realized that the pain was a bit lower, and I think it was more related to the fact that I strained my muscles a bit carrying home groceries last night. For kicks, I tried running on the way home also, and felt it again. I'm definitely going to ask the doctor about it at our appointment on Thursday, and until then I'll try to manage my exercise routine carefully.
Despite being distracted by side effects, I was very productive at work today, and we all got to have fun at Cristian's celebratory lunch. Between my productivity this weekend with installing Ubuntu 9.04 and with my work today, I'm really feeling like I'm getting my life back on track, and that makes me really happy.
Here's the deal with Gleevec. It's actually really expensive at $100 per pill or so, and I, thinking I was a relatively healthy 26 year old, decided not to purchase prescription insurance. Fortunately for me, Novartis, the company that makes Gleevec, has a program for people exactly like me: less than 5 times the poverty level, less than $75,000 in savings, and no prescription insurance. I am incredibly thankful that they actually give me the pills for free! It's funny; I would be paying much more if I actually had prescription insurance.
In any case, I was approved for this program on Friday. Until today, I had been living off of medication the doctors gave to me at the hospital, and I could tell that they were running out of options for getting me deals on it. Today the delivery man delivered a month's worth of Gleevec. To my surprise, he also delivered something I ordered last week, a new pill box!
 |  |
| From Miscellaneous | |
I'm really pleased with it! I figured that since I'd be on pills for the rest of my life, I might as well have a convenient way of carrying them. I wish it were a tiny bit smaller, so that it would fit into my change pocket, but I really can't complain.
Fortunately, my deliveries arrived in time for me to catch up with the lab before they went out to lunch. On my way to the lab, I ran for a few minutes in order to catch the bus. As I was running, I suddenly felt a pain in my chest, and at first I thought it was my heart. My heart was pounding, way harder than it usually does when I'm exercising. But I eventually realized that the pain was a bit lower, and I think it was more related to the fact that I strained my muscles a bit carrying home groceries last night. For kicks, I tried running on the way home also, and felt it again. I'm definitely going to ask the doctor about it at our appointment on Thursday, and until then I'll try to manage my exercise routine carefully.
Despite being distracted by side effects, I was very productive at work today, and we all got to have fun at Cristian's celebratory lunch. Between my productivity this weekend with installing Ubuntu 9.04 and with my work today, I'm really feeling like I'm getting my life back on track, and that makes me really happy.
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