What am I doing here?

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 shared in these peer groups made me feel like I didn't belong there. And so, for others who don't feel up to the mantle of warrior, I'm posting here.

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Your privileges have been revoked.

Freely adapted from the original "Andy Capp" strip by Reg Smythe. Last November, the province's only oncologist/hematologist left PEI. I was fortunate enough, however, to be referred to an oncologist/hematologist in New Brunswick, whom I began seeing in December. Shortly into the new year, I received, while at work, a phone call out of the blue from the Clinical Nurse Leader at the PEI Cancer Treatment Centre. I had never spoken to this person previously, but she had some news for me: Because PEI has not been able to find a replacement oncologist/hematologist, and they had no recourse but to send me to a specialist in Moncton, I and my specialist “do not have privileges" at the PEI Cancer Treatment Centre”. I will also no longer have access to the Nurse Practitioner at the Cancer Centre whom I was set up with for continued maintenance. To be clear, I will now have bloodwork and any transfusions that I require at the Queen Elizabeth Hospital in Charlotte...

My province is losing its only oncologist/hematologist.

My oncologist/hematologist is leaving P.E.I., which means Prince Edward Island will be without one. I absolutely don’t blame Dr. Whitlock. He’s got a life outside of the medical world, and he’s got to do what’s right for him. I sincerely mean that with every fibre of my being. Living in P.E.I. through the week, and seeing your family in New Brunswick only on the weekend has got to take its toll. Then there’s the road travel, especially in the winter. The difficult part, so far and for me, is losing that connection a cancer patient makes with a trusted medical caregiver who — well, not to be dramatic, but it’s true — is keeping you alive. There’s a trust, a bond, and an intimacy a patient develops as the result of putting their life in someone else’s hands. Dr. Whitlock is the third specialist I’ve had since being diagnosed with a blood cancer, and now I'm on to my fourth. Though I'm sad to see Dr. Whitlock leave his scope of practice in PEI, I'm glad to say that he has co...

A deal with the devil.

Much as I doubt that anyone is still following this blog, I feel that it has become: a) a confessional for me, b) a record of living with MF, again, for me, and c) something that someone may stumble upon, perhaps long after I'm no longer here, while looking for information and resources for living with MF. To that latter point, I know I've searched for blogs, vlogs, and other peer resources that just don't seem to be there in any great number. The few that I have found just don't speak to me; they're perky, avoiding any meaningful exploration of the negative side of MF. But it's not the up side I need to explore, it's the dark side of it. That's where I need to commiserate, the territory that deals with the back and forth between wanting to live and wanting to give over to what seems to be the inevitable, the exhaustion of dealing with blood cancer over 14 or so years, of dealing with what I've come to think of as "the medical life". It...

JAK2 Mutant

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