Today I was invited to go to a dinner with some folks from the Ulman Cancer Fund, a cancer fund specifically for young adults (15-39). I didn't really know it at the time, but the dinner was mainly to get sorority members involved in fundraising and service for the Ulman Cancer Fund, so I kind of stuck out like a sore thumb as one of the 6 guys in the room; and 3 of them were there as members of the organization. I'm used to standing out, though, and that's basically the topic of my post tonight.
For starters, the dinner tonight was not geared toward me, but it was supposed to relate to me. We heard at least three stories of young adult cancer survivors, only one of which was delivered by the actual person (she happened to be the same person who introduced Obama when he was on campus recently). Whenever I hear these stories, I kind of feel like a phony, though. Treatment for Carmichael is very simple compared to all of these other cancers; I just take a pill every day or so. So even at this basic level, I already feel that I don't fit in.
Then Brock, the main speaker, went on to talk about all of the problems that young adult cancer patients face that other demographics don't, such as having difficulty paying for college or having to worry about infertility. The former I've never had a problem with (and my advisor, Bobby, really looks out for me in that regard), and the latter is not something I'm concerned with. If anything, it makes any decisions I might have had to make easier: if Ted and I actually want to have a biologically related baby at some point, I suspect we'd have him be the father. In some sense, I think that cancer support is heterosexist, but I can't really complain about it too much since I don't really need the support and when you start taking intersections of minority groups like that you quickly get down to a tiny group of people. For example, I'm guessing I'm the only young adult gay man who uses Linux with CML at the University of Maryland.
At the meeting tonight, I couldn't help but be drawn back to the days when I was involved with the gay community at UMD. I thought activism was so important, and that I needed to be a part of it. It took a few years, but I realized that I've got way more important stuff going on in my life than these issues. That's not to say that activism isn't important, both for gay rights and for cancer support, but it's to say that my talents are better suited elsewhere.
I think that this last point really highlights some irony in my life. I really feel like I've had a much easier time dealing with Carmichael because of everything I went through as a teenager when I dealt with being gay. There are actually a lot of parallels. When I received my initial diagnosis, it felt like my world had ended, but I have to admit that I felt the same way when I first uttered the words, "I'm gay," in the shower when I was 14. Then there was the problem of telling everyone I know and love that my life has changed; when I was young, it was a long and painful process to tell everyone, but I really learned from that and was able to deal with it quickly as an adult.
Really the toughest part is coming to terms with your new identity. I was an ordinary guy as a kid, and then all of a sudden I realized I was a gay man, and that was not an easy transition to understand my life in relationship to that new identity. After adjusting to my new identity that first time, it became very easy to adjust to changes to my identity in the future. So naturally, I adjusted to being a cancer patient very quickly, and life returned to normal very quickly. Sure, there are some issues still, but there are still issues with being gay, too, so life is pretty normal these days.
In the end, there are a few new interesting issues at the intersection of these two aspects of my identity. The first is that the Red Cross does not allow gay men to donate blood, which most likely delayed my diagnosis. That really irritates me, but I'm not sure how to effect a change in their policy or even that it would actually be a positive change from a purely statistical standpoint. The second is that my attitude toward gay marriage has changed somewhat. I no longer feel that it can wait and that it will happen eventually; I want to get married, and although I plan to live a long and happy life, being faced with my own mortality makes me want to get married sooner rather than later.
Fortunately, it could be legalized in D.C. very soon, so I may get my chance. Maybe I should be saving up money...
Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts
Tuesday, October 06, 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.
Friday, September 25, 2009
Introduction
My name is Randy and I was recently diagnosed with Chronic Myelogenous Leukemia (CML). Like, really recently. As in three weeks ago. As it turns out, modern medicine is well-equipped to deal with what was not-too-long ago considered a deadly form of cancer. I took my initial diagnosis pretty hard, since I just heard "leukemia" and immediately thought, "I'm probably going to die... sooner rather than later." Thankfully, my prognosis is actually not bad at all, and with the help of my little friend (a 400mg daily dose of Gleevec) I will continue to live a long life supposedly fraught with a few side effects here and there.
I admit, despite my boundless optimism and sunny disposition, I sometimes idly have dark and depressing thoughts (though you might not know it if you weren't reading this blog). However, I've decided to focus on positive thoughts. This blog will most likely blend the good and the bad, but for the most part I expect to just deal with the bad and focus on the good things that have come of being diagnosed with CML.
I think most of my friends and family (and even strangers) have actually taken my diagnosis harder than I have; hopefully I'll get to that at some point. :) But my really close friends, the ones who understand me the most, really understand my attitude and are definitely with me on taking CML in stride and having fun with it. To that end, we've even given CML an affectionate name: Carmichael. I like to think of Carmichael as a friend who will never leave me. Even if the doctors kill him, his memory will live on in me, and that means something... I guess. :)
I admit, despite my boundless optimism and sunny disposition, I sometimes idly have dark and depressing thoughts (though you might not know it if you weren't reading this blog). However, I've decided to focus on positive thoughts. This blog will most likely blend the good and the bad, but for the most part I expect to just deal with the bad and focus on the good things that have come of being diagnosed with CML.
I think most of my friends and family (and even strangers) have actually taken my diagnosis harder than I have; hopefully I'll get to that at some point. :) But my really close friends, the ones who understand me the most, really understand my attitude and are definitely with me on taking CML in stride and having fun with it. To that end, we've even given CML an affectionate name: Carmichael. I like to think of Carmichael as a friend who will never leave me. Even if the doctors kill him, his memory will live on in me, and that means something... I guess. :)
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