Blades Against MPN: An Overview
Blades of power (strength, protection, self-defense) and blades of light (illumination, knowledge, learning ): two of mankinds' oldest tools in the never-ending struggle pitting life against death. Knives (representing power) and flashlights (representing light); two highly functional tools presenting as imperfect physical examples of their ideals.
Knives and flashlights: used in actual physical struggle for years, enabling mankind to live better, safer lives. Two tools which are constantly evolving to be better, stronger, closer to their ideals, even while enabling success at many levels for man.
In the last 10 years, our battles against MPNs, and especially myelofibrosis, have yielded great victories. It is no longer an automatic death sentence to receive the diagnosis of myelofibrosis. There is now some hope.
I know this because I was diagnosed with myelofibrosis in August 2015.
I also know that we have a long journey in front of us; I know this because the only cure available (a stem cell transplant) is still a risky, expensive procedure. It is so risky that I do not qualify for a couple reasons: first, I do not have the requisite number of people to provide me with support during the initial adjustment phase.
It has been deemed necessary that somebody be present with the patient on a 24x7 basis for an initial period after the transplant. There are various reasons for this; one of the most basic is that timing of certain ancillary drugs can become critical, and the patient cannot track all the drugs without help.
Even with all the best preparation in the world, there is a good chance the patient will not live for long after the transplant.
So, then, in a quite real sense I am still sentenced to death; I am merely waiting to die. I am like the prisoner on a death row: the walking dead. I remember my first meeting with a hematologist after release from the hospital in April 2016: we sat in his office.
It was a nice spring day, but I really didn't notice. I missed the bulk of 2016: the cancer was causing so much organic damage that I was unable to do anything but work. I had been hospitalized for severe bleeding, due to a misdiagnosis of that damage.
The hematologist I had been seeing simply refused to believe my pain. He thought, in his snobbery, that I was addicted to painkillers, lying about the pain, and depressed. I remember when I went to the men's room that morning, and suddenly blood sprayed from my mouth all over the inside of the stall and toilet. I didn't think I would live.
The doctors at the hospital didn't think I would live either; they asked Sharon if I was religous, because now would be the time to bring in a priest. When I was hospitalized, I required 18 units of blood - the body only holds 12 - and I was placed in a coma & intubated for a week. I would feel the effects of this for months - it wasn't until November that I began to feel somewhat normal.
Hey, if you're going seek drugs, put on a good act is my motto!
The new hematologist looked at Sharon and I, and told us that my case had no bright spots, whatsoever. That however he viewed it, he came up with negatives. He thought I would die soon, and told me to go home, lay low, and do just that.
The expert told me to go home and die.
Nobody should ever be put in this position because of a lack of knowledge; because of powerlessness; because...well, because of anything. It should be up to only the patient to decide whether or not (s)he wants to live; a lack of knowledge or resources should not be the determining factors.
It's close to a year later. There are days when I have immense pain; while I feel better than a year ago, the damage has been done, and I'll never good again.
As one of my last projects, I want to help as many other patients as possible. I have come to realize that one of the most effective ways to do this is to enable the MPN Foundation to do their work. By organizing this raffle, by raising funds, and forwarding them to the MPN Foundation, I hope to be giving some patients a chance at a life.
A life without this nasty cancer. A life of hope. A life to be lived.
--Bob Wanamaker, January 2017