I went to see a physician at the beginning of the year, because last year, my health was crap. My first full blood count suggested hypothyroidism (false alarm) and high hemoglobin (too many red blood cells). The physician was unhappy. The second set, a month later, showed an increased hemoglobin again.
I was sitting at the hairdresser, my about-to-be-blonde hair in foils, the day before our family Mauritius trip when she called with my results.
"Your hemoglobin is much too high and it keeps getting higher. Something sinister is going on. It could be a tumor. It could be leukemia. It could be a blood disorder. You probably need a bone marrow biopsy. You must have an ultrasound today. You need to see a hematologist."
WTF? Did you just say 'bone marrow'? Hematologist? Like the people that deal with blood cancers? I felt hollow. Numb. Limbless. It was as if the world was spinning around me and I had been brutally extracted from it. I desperately tried to hold onto my thoughts, but they were spiraling. Do I have cancer? Did I do this to myself? Will my children grow up with step mother? Is this a lesson? A punishment? Will I lose my hair? My mind? Jesus did I do this?
That afternoon, my husband came with me for an ultrasound, which showed no tumors, but an enlarged spleen - my body's attempt to deal with the increased volume of red blood cells. We called the hematologist who's earliest appointment was a month away and she requested a final test: JAK2.
We went to Mauritius - me, my family and my terror.
A week later, I phoned the doctor. The JAK2 was positive. I have Primary Polycythemia. It happens to men in their 60's. It happens to 1 in 100 000 people. And it happened to me. My bone marrow is damaged and my body is producing too much hemoglobin. Without treatment, I have 6 months to 2 years and then I will die of a stroke or a heart attack or something equally unoriginal. With treatment, I should be fine. Although 'fine' looks different now. My lifespan will be shorter and managing what is an incurable condition will be a lifelong commitment.
We finally got an earlier appointment with an oddball genius professor of hematology at the Joburg Gen and he gave us mixed news.
"This is manageable."
"You have a 10-30% chance of getting leukemia."
"We will manage it initially with venesection (blood letting)."
"You will probably become iron deficient."
"I will do the bone marrow biopsy under anesthetic. You won't feel anything."
"The current drugs available are chemotherapy drugs. They are well-tolerated."
"You can still drink wine."
"You can't have more children."
"There are very encouraging drug trials in the US and Europe that may eventually offer a cure."
"You didn't do this to yourself."
"You didn't do this to yourself."
"You didn't do this to yourself."
I've had the first venesection. They removed one of my 6 pints of blood and it was fine.
I am fine. Traumatised. Vulnerable. Hopeful. Grateful. A different kind of fine.
