In 2013, I was diagnosed with a bone marrow disorder, a benign form of Leukemia called "Polycythemia (PV)" along with c Early Stages of Pre-Fibrotic Myelofibrosis MF. I remained stable for ~3 years.
During 2016 things dramatically changed! Key blood counts declined and symptoms increased in both frequency and intensity. In 2017, when I visited MD Anderson in Houston, my pathology report stated I officially transformed to MF, when the AXL1 and Trisomy 8 mutations were found. Within one year I was given the MF-3/High Risk prognosis that included a shortened life expectancy (< 2 years), if I did nothing.
Since the only cure for MF is an Allogenic Stem Cell/Bone Marrow Transplant, I began this process in May 2019 at the Seattle Cancer Care Alliance (SCCA)/Fred Hutchinson. Mayo Phoenix was fired after they prematurely discontinued a medication (Jakafi) that triggered a very scary life-threatening cytokine attack that placed my transplant on hold.
May 10th, 2019 is considered Day-0, when my perfectly matched donor stem cells were infused through my port into my body. My transplant experience was uneventful. Most important - I made it and celebrated my one-year re-birthday! Life marches on with huge thanks to Ethan, my donor, who saved my life. An extraordinary young man.
I am now officially two years post transplant and beginning my third year. As each new year passes, this date will remain more important than turning "60" on June 30th.....