JAK2 Mutant

There hasn’t been much information to share here lately, or at least it’s seemed that way.   As predicted in an earlier post , friends have begun to pass away. Leo Cheverie was 60 when he died of cancer this past October, and although it’s standard practice to heap praise upon the deceased, Leo was truly one of a kind. He was a smart, thoughtful, compassionate individual who was involved in just about any social justice cause you can think of. The posthumous accolades such as the Leo Cheverie Cultural Connector Award (PEI Arts Awards) and the Leo Cheverie Activism Award ( PEI Division of the  Canadian Union of Public Employees (CUPE) )  support this.   Leo and I would check in, whether through Messenger or by meeting for lunch, to share cancer stories and to generally commiserate. One thing we cancer people rarely let the rest of you know about is the fact that we dish about you. Yes, you. We talk about how you interact with us, how you respond (or don’t) to our cancer, whether you se

Almost 12 years ago, at the age of 46, I was diagnosed with a blood cancer, one of three Myeloproliferative Neoplasms (MPNs) :  P olycythemia Vera (PV) , E ssential Thrombocythemia (ET) , and  Myelofibrosis (MF) . The card I drew was PV, confirmed by blood work and the presence of a JAK2 mutation . Because there's a twist in the plot, I won't get into too much about my PV experience. The highlights, however, are as follows: As the result of a routine physical, my GP noticed that my blood counts were off. He sent me for a retest, which confirmed that something was askew. I was eventually seen at the PEI Cancer Treatment Centre by the only practicing hematologist at that time in Prince Edward Island (PEI), the small Canadian province on the east coast of Canada where I live. During our first meeting, he diagnosed PV, which of course, I'd never heard of.  As he was now in charge of my PV treatment plan, he prescribed a twice daily  oral chemo med -  hydroxyurea (hydrea or HU)

When you're diagnosed with a blood cancer, one of your first instincts is to go online and find out all you can about it. After you absorb a Coles Notes version of the mechanics of your disease, what you crave are shared personal stories detailing experiences. That was my trajectory anyway. After my diagnosis changed from one blood cancer (Polycythemia vera, aka PV) to another (Myelofibrosis, aka MF), I was surprised that I couldn't find those personal stories that I sought. Or maybe I should say that I couldn't find personal stories that I could relate to.  Joining peer groups on Facebook, I found that most of my peers there were overwhelmingly American, Christian, straight, and a breed of people who refer to themselves as 'warriors", whereas I'm Canadian, atheist, gay, and anything but a warrior. A survivor, maybe, but a warrior, no.    For sure, there is overlap and much to be shared were you to create a Venn diagram using the circles above, but the content