I think I had an epiphany about my difficulty in writing a blog.

A long time ago, at age 46, my father had a softball-size benign tumor removed from his chest. Back then X-rays were one way to look inside the body. Since CAT scans, PET scans, MRIs, MRIs with contrast etc., and laparoscopic surgery did not exist the other method was exploratory surgery (aka open them up and see what we find). Although my dad lived another 40 years, he was never again a vigorous person.

I remember the pall on our family as dad worried about the family’s future well-being. After my heart attack and bypass surgery, at age 47 from MPN, I was quite concerned about the effect on the family’s future. I became determined as much as possible not to change my active lifestyle.

I did not want the then myeloproliferative disorder to be a defining force in my life so I only partially discussed it with only close friends. From my science background, whenever MPN came up I realized I talked science, such as it was, and quickly lost the listener(s). I never mentioned the psychological sides of MPN. Besides, I worked at a medical school and I knew how little was known.

However, the times are different now. The world of MPNs has changed. Research findings give us hope, even if it is not right around the corner.

After discovery of the JAK2 mutation in 2005, in 2008 the World Health Organization and the medical community reclassified myeloproliferative disorder as a myeloproliferative neoplasm (MPN). That made it a cancer. The new name did not change anything happening in my body but now that it was a cancer, research dollars became available. The scientists have made many advancements but we are a long way from a cure.

Given my decades-long experience with friends and earlier, even primary care providers not understanding MPNs, when I first heard about joining Sole 2 Soul for MPN, my motivation was the awareness component more than fundraising. However, it is a little like the chicken or the egg question. Research findings lead to more awareness which leads to more fundraising which lead to more quality research. Research is what will change my prognosis.

I have contributed to the MPN Research Foundation for years, but the Sole 2 Soul experience has allowed me to expand both fundraising and awareness simultaneously.

P.S. What is a neoplasm? An abnormal mass of tissue that forms when cells grow and divide more than they should or do not die when they should.