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Elevated

Posted Sep 11 2010 12:08pm

I was in the elevator at the Fancy Hospital Medical Building after my phototherapy session, which has really helped alleviate the itching/burning of my skin caused by my polycythemia vera . A guy, sort of pale, dark hair I think pulled back, maybe 30s, hunched over a little, black t-shirt, was talking to a woman about how he had to quit skating because of blood clots. He got off at the second floor. He didn't look tough enough and scarred enough for hockey. I asked her if he had polycythemia vera, and she said it sounded like that, but not quite, and I guessed, Essential thrombocythemia ? and she said yes, that he'd had his spleen removed a few months ago, and that he had been a professional skateboarder. My hematologist pats down my spleen at every office visit, because it can become enlarged, but it's always OK. I had essential thrombocythemia first, and it does often lead to PV. ET didn't seem like anything. I just had too many platelets, and eventually got some prophylactic phlebotomies for it (or was it for PV only? I don't remember), and my skin itched after taking a shower. It seemed like a sleeper disease, a disease that isn't there. I know a kid (30s) who has it who doesn't want anyone to know and I was was astounded to learn that he wanted to keep it quiet. I know that when I'm on a plane I'm supposed to do isometrics so the blood won't pool into clots, and the hematologist and her assistant have schooled me in the symptoms of a blood clot (a piece of pain starting in the legs; but the sudden appearance of two identical bumps on each ankle, for example, has nothing to do with blood clots; that's something I knew but it panicked me anyway the day that they appeared and I called the physician's assistant who of course said it must be mosquito bites, but they weren't bites, I knew that), but I think I'm self-aggrandizing when I call my disorder cancer, even though it is cancer. To get info on it from the government you go to the National Cancer Institute , but the Mayo brothers think of it more of a disorder than a cancer.

Along the same train of thought though it seems not to be: I had to start up with the periodontists again because I had a tooth implant that failed. It was loose in my mouth. It's a father-son business, and the son had done the work. When I went back I asked to confer with the father to see if he could supply a reason for the implant failure. He looked at my chart and asked me if I still had cancer, and I said, Not breast cancer, but I have blood cancer and take oral chemo. He asked what I had and then told me that it wasn't cancer. I felt devalued, as if he were saying that I was faking it. I was emailing someone who also has it and was telling her that I want it to be considered cancer, and she asked me why it mattered. I don't know exactly. It has something to do with the shiny burden that cancer is. Cancer is deadly, cancer is scary, cancer is what everything can give you, cancer is the end of times, it's dramatic, and if you have cancer then you are special. I have beat/beat/beat/drumroll, c-a-n-c-e-r. Conversation stopping, jaw-dropping, cabosh-putting-on, oh-my-god-how-wonderful-you-are-to-go-on (I can't go on, I must go on, I go on) cancer. The domestic and industrial beast. The dragon. The disease that makes you a martyr.

To continue with the digression on the pere-iodontist, or periodondist pere: He looked at my list of medicines and said, O of course your chemo lowered your resistance and you had bacteria so that's why the implant failed. Couldn't be because of some failure by periodondist fils. I happened to go to the hematologist a few days later, who showed me my white cell and neutrafill counts, which were clearly inside of normal, because it's chemo but not that kind of chemo, so where's the excuse now, pere doctor?

I was thinking of turning this blog into the laments of the continuous patient, but I don't want to be that person, it's just that I'm going to the doctor or medical building all the time, for medical and quasi-medical appointments, that I'm presenting my case to alleged healers and those who administer healing, so it does seem to be a focus but it can't be the main focus, unless it's interesting enough to write another book about. Which it doesn't seem to be.
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