How I’m managing and treating
my polycythemia vera
An author, a professor, and a breast cancer survivor who just happens to have PV too.
For me, polycythemia vera (PV) equals itching. And sweating, though it’s hard to know which part of an attack of sudden heat and sweating is a hot flash and which part is PV. (Or hot flush, as the Brits say, which seems to give the symptom more dignity and gravitas, as if the heat is flushing through your whole system.)
But the story begins in my blood. My health insurance requires an annual blood test. In 2006, when I was newly 50, my blood showed I had too many platelets. I went to a hematologist who diagnosed essential thrombocythemia (ET), which just means too many platelets. It could develop into PV, or leukemia.
Two years later I was diagnosed with PV, which is, in lay person’s terms, too many red blood cells. It’s a rare, chronic blood cancer. Now my hematologist says she thinks I had PV all the time but it was masked by my “do-it-yourself” monthly blood purges (aka periods), that got rid of excess red blood cells. My periods stopped suddenly from the chemo I was getting for breast cancer. I’d already been tested to see if I had the JAK2 nonhereditary gene mutation that indicates PV.
She asked me if I itched when taking a shower or bath. Bingo! I’d been thinking I was allergic to my shampoo, or soap, or water — something was making me itch and I had found that if I made the water colder, I’d itch less. There’s something satisfying about learning the reason for a symptom that was troublesome, but not so much that it sent you to the doctor.
How I’m feeling
It’s hard to explain PV since it’s so rare. The typical person who gets it is a man over 60. I know of three others with the disease. They’re all women, and two are a mother and daughter who were stricken much younger than 60. It’s not hereditary, though I have a cousin who had thrombocythemia, and my father has Waldenstrom macroglobulinemia, which develops when marrow creates too many white blood cells. Perhaps we are too enthusiastic about life, and frightened at the same time — we produce too much. We’re afraid of running out.
I’m itchy all the time. The technical explanation, I tell people, is that PV makes my histamine go crazy. It’s mostly my legs but often my arms, even fingers, and chin. I’ve always been allergic to mold, but reacted to it in my nose and lungs. Now I react in my legs. I can walk into a room and tell you immediately if there’s mold or dust. My legs will prickle, which means I get a feeling somewhere between an itch and pins-and-needles. I am the most sensitive canary in that coal mine we call earth.
How I’m treating it
There was bloodletting, which means you go to the blood bank and look like you’re donating but really they’re doing you a favor with this “prophylactic phlebotomy.” They don’t want your blood. It’s too thick.
I started a chemotherapy drug which, in lay person’s terms, thins out the blood. It also may cause a person to develop leukemia, but not taking it can also lead to leukemia. The blood levels were easier to take care of than the itching.
The drug worked on paper, but I was still itching. I was prescribed one medication and then another antinausea drug taken by people who are undergoing chemo.
I was also taking 81 milligrams of aspirin a day, which thins the blood so well that I have trouble stopping the bleeding if I get a cut or nick.
Still, all that wasn’t enough. I was going for light therapy 1 to 3 times a week to reduce the itch. Most of the people in the waiting room, it seemed, had psoriasis or eczema.
How I’m doing
People want cancer to have changed you. But I’m not more aware of my mortality or more grateful for the gift of life. However, after surviving breast cancer, I travel more. And I have to keep up my guard for allergens and heat. Still, I make mistakes. I went to the public outdoor baths in Budapest. After about ten minutes in the hot water, I realized, “Mistake!" I was itching like crazy for about an hour.
I joined a rowing team for breast cancer survivors in 2007. When we row indoors, the room can become very warm, and I’ll start itching. Everyone in the room has gone through an ordeal, but I feel especially put-upon because my symptoms are so immediate and extreme. I’ve been afraid to push myself on the rowing machines because I don’t want to start an overheated itch cycle. So I hold back.
Twice in the last two weeks I’ve been short of breath at the end of 15 minutes of intense rowing on the river. The first time it happened I was told my lips were blue. I went to the emergency room and my lungs and heart were fine.
Itching won’t kill you. But it takes your mind off what it should be on. I try to be Buddhist about the itching — to merely notice it and not get emotionally involved. My immediate reaction, though, is to panic and feel sorry for myself. But I’ve gotten better. During an extreme itching session now, I mostly don’t weep or feel that life is not worth living.
How I’m facing it
I know I’m more than my cluster of diseases or conditions: asthma, allergies, anxiety, PV, and breast cancer (gone but not forgotten, along with my left breast). I know that I have a tendency to overdramatize but also downplay the importance of my symptoms. I try to protect myself. If I’m staying at a friend’s, I tell them I need to be in a cool room because of my weird blood cancer. (It is cancer. The NIH says so.) I said something similar to my Zumba teacher at the health club. You have blood cancer? She asked, astonished. I felt I was overplaying the cancer card.
I have not been able, as they say, to monetize this reaction, though I’ve thought about it. Really, who would pay for someone to come in their home and tell them they’ve got mildew that’s not yet visible?