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A realization.

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, relationships, and mental and emotional health. In the end, I believe the success/failure rate is 50/50, with failure frequently meaning death. Success, however, can mean no more MF.

The other option is maintenance with the aid of meds and my medical team, which is what I am currently doing. That means twice daily Jakafi (aka Jakavi) pills which cost $3000 per package, and for which I am enrolled in PEI's Catastrophic Drug Program to cover (I must apply yearly), once daily low dose ASA, appointments with my specialist every month and a half or so, and blood transfusions when I need them (I am anemic, whether that's from the disease, the meds, or both, I don't know). Median life span using this method is eight years. A year has already gone by, and when you're counting, those years fly by fast. 

Contemplating all of this has pretty much put me inside my own head constantly. I'm going to have the assessment, and then decide which way to proceed. I know most people are gung ho for anything that extends life, but it's here that I get stuck. 

I've recently turned 58. I don't have children. If I make the eight years, will 64 years have been enough? Do I want to put myself and my husband though the SCT process seeing as it has an uncertain outcome? What would this do to our finances? What does this mean for our future?

Currently, it's the latter -- maintenance -- I'm favouring in terms of which path to take. I type this, however, knowing that I can waffle when the spectre of death is looming directly in front of me. It's what happened when I ended up in hospital with a splenic infarction during MF diagnosis and I was under the impression that I was dying. There's nothing like thinking you're dying to make you want to live.

Contemplating all of this has recently brought me to a realization: I'm so focused on my own mortality that I've been ignoring the mortality of those around me. As I've entered the age where it's inevitable that peers I love will die, I need to take the time to engage with and appreciate my circle more fully. In short, I simply need to be more aware. This can only be the healthiest of realizations in all regards.  

 



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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...
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