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.

Comments

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...

Your privileges have been revoked.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...

Assessment.

My assessment in Halifax for a stem cell transplant (SCT) took place this week. I meet with Dr. Christina Fraga and her team for an in depth discussion of the process, and was given the choice whether to go ahead or decline. Briefly, here's the information I was given: I am not quite "sick enough" to receive an SCT at this point. This is a balancing act because it was suggested that I should be blood transplant dependent first, but if I had a heart attack, stroke (for which having an MPN puts its carriers at risk) or other significant health event in the meantime, I'd be ineligible for a future SCT. Secondly, as only one potential donor match was found, and it was not a "perfect match", the chances of success were hindered significantly. Also, during this appointment, the gravity of undergoing an SCT was driven home to me. HARD. As MF is especially difficult to treat via this method, there are a number of points at which an SCT can fail. This can leave the...

JAK2 Mutant

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