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.
Showing posts with label research. Show all posts
Showing posts with label research. Show all posts
Wednesday, October 07, 2009
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.
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