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More from the Annals of Polycythemia Vera

Posted Mar 03 2009 2:22pm 1 Comment

L's office brings in people to test our blood every year in a "wellness screening." I have polycythemia vera, that in layman's terms means I have too many platelets. (I want to link to earlier posts about PV but the linker isn't working. See 2/20/08, 3/9/08, 6/2/08, 2/1/09.) I sent my results to my hematologist yesterday and today she said that since my platelet counts are still high, despite my therapeutic phlebotomies (I go to the blood bank and they remove a pint and throw it away) that she wants to talk about prescribing hydroxyurea to lower the count. Wikipedia tells us that it's "used in hematological malignancies, specifically polycythemia vera and essential thrombocytosis." Whether my PV is cancer or not depends on whom you talk to. The delightful thing about hydroxyurea is that it prevents leukemia and also can cause it. It gets you coming and going. Side effects include "drowsiness, nausea, vomiting and diarrhea, constipation, mucositis, anorexia, stomatitis, bone marrow toxicity (which may take 7-21 days to recover after the drug has been discontinued), alopecia (hair loss), skin changes, abnormal liver enzymes, creatinine and blood urea nitrogen." For the moment I'm not upset, just scared about adding this new drug to my large bouquet of strong medicines. Will I have to take more drugs to combat the side effects of hydroxyurea?

The FDA tells us that the drug is good for ovarian cancer. I wonder if you can use it pre-emptively. Would that be the silver lining in this cloud? Likewise, what if people took chemo and they didn't have cancer? I suppose the chemo would kill off any cancer cells swimming below the radar. But it wouldn't keep you from getting cancer later.

Mayo tells us we should wear disposable gloves when handling the tablet or capsule. After all, this is a substance that can turn your nails black, cause hallucinations, and as I said, bring on leukemia--even years after you've stopped taking the medicine. It can lower your white blood cell count, so make you more susceptible to infection.

On the other hand, it can cause weight loss.

The thing about polycythemia vera, or at least my version of it, is that the symptoms are ridiculous. I have tiny red dots on my skin and I get very itchy from being in hot water or even from the deep massage I'm getting for my Achilles tendonitis or even just out of the blue. It also gives me red cheeks so I look robust and healthy, like I've spent all day skating around the frozen-over dikes with Hans Brinker.

I felt fine before I was diagnosed with cancer two years ago, and I feel fine now and I keep thinking of Ann Patchett's book, Truth & Beauty, where she quotes Lucy Greely saying that her cancer made her feel special. It's ridiculous now to feel special when one out of every eight or nine US women has a breast malignancy. But there's this Thanatos-loving part of me, or melodrama-loving part, that feels sort of hopeful about the possible endometrial cancer. And I don't mean hopeful as in, It's probably nothing. It's like this dark hopefulness, like an attraction to the edge of a chasm. As in, O, I'm even more special because I might have a different kind of cancer.

What kind of person thinks this? Do I feel another cancer is inevitable, so that it's a relief when I think of finally being hit by a second one? Then I don't have to worry about the second hit. If you're dying, you don't have to worry about dying, because you're already doing it. When I was younger I felt so guilty for being alive because I knew that if I didn't have asthma medicine I would be a goner. And I knew I was privileged to have the asthma medicine, and later a breathing machine, because there were people everywhere who weren't getting care. And maybe they were dying and maybe not, and it seemed like my real fate was to die. To be dead. (This is why I've been in therapy since the Nixon administration.) It helped that my parents paid for a machine like mine that they donated to the hospital. I went to summer camp for three years and hated it because I couldn't breathe but I didn't tell my parents, I think because I didn't want to disappoint them. There was something deeply wrong with me, I couldn't exist with and in Nature, even though it should have been... so natural. Nature could kill me, and now my own nature, my blood, has turned against me. Has thickened against itself.

We are finite beings. Is that so hard to fathom? Yes. Because we have been here our whole lives. The world could not have existed before we were born.
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Hi.  I found your page when googling "polycythemia" and "gastric distress"--my symptom of the day.  (Yesterday, it was the world's longest and most excruciating Charley horse.  I'm still limping.)  I already have two chronic diseases, so I attributed the terrible fatigue I've been feeling for a long time to those.  But recently, my hematocrit levels have gone up, first to 50 and then to 52 over the past year or so.  (I am female, so those numbers are elevated; they wouldn't be if I were male--one of the many fun facts I've learned over the past couple of weeks.)

I am so happy I opened your page.  Despite being a bit frightened, my strategy is to read as much as I can about the potential causes of polycythemia.  None of them sound exactly fun.  I am going Tuesday for my first visit with a hematologist, so I don't know what's happening yet. 

I have been reading a lot of scary stuff about polycymia for the past few weeks, but reading your page made me laugh.  That's one thing I wish people who weren't chronically ill could understand--we don't want to be pitied.  Some of what happens is just so incredibly ridiculous.  Without a sense of humor (dark at times), I would be in far worse shape than I am. 

Your reference to Lucy Greely struck me.  Until recently, I was working toward a PhD in English (I had to give it up due to both health and financial reasons) with a focus on personal writing, particularly by people with disabilities.   Autobiography of a Face was one of the texts I used. 

Needless to say, your article or blog entry?? made me feel a whole lot less alone as I'm facing yet another chronic disease--I also have primary aldosteronism and hepatis c.  Anyway, I just wanted to say thanks, and I'm looking forward to reading more!  Good luck with your health challenges. 

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