JAK2 Mutant

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...

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...

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 can...

Post-assessment, I've started raising awareness about the need for Canadians aged 17 to 35 years of age to sign up for the Stem Cell Donor Registry located on the Canadian Blood Services website. Selfishly, my goal is to have a perfect donor match available when it's time for me to be the recipient. Of course, others will benefit from increasing the number of donors on the registry, but I'd be lying if I were to say that my motivation was anything but self interested. The first step in raising awareness has been to appear on CBC Radio's supper hour radio show Mainstreet to talk with host Matt Rainnie and Brandon Peacock,  Community Development Manager (Ottawa) /  Donor Relations & Collections ONN  about the registry. You can listen to the interview here . If you or someone you know is interested in signing up for the Stem Cell Donor Registry, you can do so here . It's my understanding that all that's required to register is a simple swab of your mouth. 

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...

When you have an MPN, it can be easy to get wrapped up in your own situation, losing sight of what's going on around you.  Currently, I've been focusing on this: One of the treatments available to people with MF is a stem cell transplant (SCT). Although my specialist is not a proponent of them (He says that they don't work), he has agreed to refer me to his colleagues at a blood cancer clinic in Halifax, Nova Scotia to be assessed for the procedure.  What happens during an SCT, in my understanding and in layperson's terms, is that your immune system is destroyed with chemo and radiation, you're given an infusion of donor stem cells, and then your immune system is rebuilt. The healing process takes about a year, the majority of which you're homebound. It's crucial to avoid infections, and two to three people (to keep the possibility of infections to a minimum) are designated as your caregivers. It's a long and gruelling process that affects your career, r...