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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. 

Throughout the three years of living with this particular blood cancer, my mind has been all over the place, settling on something one minute and then casting it aside and going in another direction minutes later. I guess that's what happens when you live with a disease that's designed to take your life, and if you're the sort of person who spends far too much time processing it, and perhaps more pointedly, overthinking it. 

Two months into 2024, I've come to an odd, but somehow comforting conclusion: My disease and I are going to make an agreement. I've decided that I don't want to pursue a stem cell transplant. In truth, I don't actually want to live much longer. I'm 59 years old, and that sounds to me like a good age at which to die; old enough to have experienced lots of amazing things, but young enough so that my death can still be considered "a tragedy". 

To that end, I'm going to keep on the maintenance programme my specialist has placed me on - one of the things it does is prevent pain and discomfort - but I'm not going to seek a way out of this. I'm going to make that agreement: I've had my body for 59 years, and MF gets it for the rest, it gets to "end" me. 

All this is not to say that I won't be terrified when the end comes. I have rarely hidden and rarely dismissed my fear. The facts, however, are as follows:

I have lived an interesting life.

I have accomplished several things I'd set out to accomplish.

I understand and subscribe to the concept of "having lived enough".

I am tired of what I've come to think of as "the medical life": 14 years of needles, phlebotomies, blood transfusions, bone marrow biopsies, tests, appointments, etc.

I have, off and on, lived with suicidal ideation since I was 14-years-old. 

I have a muddled mind that I don't think is rational. 

With both PV and MF, I have experienced symptoms, and I don't like what I've been encountering. They can only get worse. 

There is more to it, of course, and in a way, reading back over what I've typed so far, it all seems too cool, too rational. But that's where my mind has settled currently, and it just feels somehow "right". 

We talk and write about the depression associated with a cancer diagnosis, but it's all too rare that we actually dig into it, acknowledge it for its real world effects, name the pieces that make up the whole. When you receive a diagnosis of cancer, you begin to look at life and death differently. That is to say that you think about it a lot, it weighs on you  

For me, this agreement I'm making with my blood cancer feels like a kind of control over my fate. It may not make sense to a lot of people, especially given the "life at all costs" society that we live in, but my disease has trained me to feel this way, and apparently, I've been paying attention.   

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