I guess it's appropriate to provide a little more detail: first off, I'm not a Christian. I think it's absolutely wonderful that anybody has found a spiritual direction, and if that involves Christianity, more power to you. However, I have another belief set.
I was initially diagnosed in August of '15; I got home from work, thought I was having a heart attack, as my chest and back and left arm hurt badly. Drove myself to the ER. Turns out I was not having a heart attack, but the cancer had caused my red blood cell count to be about 20% of normal, and my heart was straining to get enough oxygen to organs. I was placed in ICU, received 8 units of blood, a couple iron infusions, and a lot of tests; a bone marrow biopsy determined the dx as myelofibrosis.
I am considered to be "advanced" or "high risk". That corresponds to stage 4 in tumor-based cancers. Prognosis is another 6-12 months IF I respond very well to the drug I am taking. If I do not respond all that well, my prognosis drops to a couple months. My spleen is 2.5 times normal size; my liver is shot; I have significant esophageal varices; my red blood cell count is low, and I'm immuno-compromised. A separate disease is turning all my ligaments and tendons to bone. My mid-back and ankles are immobile.
I bled out in March of this year from the varices. They told my wife I likely would not survive. But here I am; it took me from April through October to recover, but I have some decent days now. As long as the spleen remains so large, I am at risk of sudden death - that's the thing I have to get fixed. There are many reasons we can't just remove the spleen. There's the risk of death from all this organic damage.
Then there's the separate risk from the cancer itself. I have the genetic profile which is strongly associated with a sudden transformation to acute myeloid leukemia; out of hundreds of myelofibrosis patients I have met, I only know of one who has survived AML.
I used to compete in strongman. I had an 850lb deadlift. I was a maniac at age 50; I could move a lot of weight quickly. That part of my life is over. I've lost an incredible amount: my career, my training + competing...the list is huge.
I am going to start, in January, building items made from paracord (the usual stuff), and use the "colors" for myelofibrosis, orange and red. I will donate a portion of the proceeds to research into finding treatments for this cancer - combined with my blog, where I write about my life with cancer, I'm trying to find a way to have a positive impact on other patients' lives that is within my grasp. I've talked with some other folks about setting up a non-profit; that might happen someday, but first steps first. I need to write more, and learn how to make the paracord stuff.
I have always brought a positive mindset to my life, my work, and other people. However, I have a newfound respect for the positive: without it, I would have died earlier this year; I would have died in July '15 when my BP dropped to unreadable.
So far today, I have used my Spydie Tasman to cut some zip ties. Nothing exciting, yet, but the day is young.
I hope that everybody stays strong and positive!
