My enduring legacy

When I realized my health challenges might limit how long I’m around, I started to review my life, wondering whether I would leave a legacy of any kind. Is there anything people will remember me for? I have no extraordinary talents, no unique accomplishments, no stunning physical attributes. I’m just your average gal. I can be funny occasionally, usually when I blurt out something completely inappropriate, and hopefully the occasional client has considered me a decent psychologist, but that’s about it. My grandmother, a concert pianist, thought I had the best ear of all my siblings, but I have certainly never fostered this potential. (I’m told I disliked one piano teacher so much I hid under the piano during lessons, but I must have repressed that traumatic memory.) Now all I do with that ear is cringe when others are off key. I just can’t watch those singing reality shows; it’s too painful, especially before the real weeding starts.

So imagine my excitement–okay, after the initial shock and panic–upon my CML diagnosis, when I learned I had earned entry into a very rare club. I had not just one but two genetic mutations, and there were only 8 documented cases like mine in the world. It made me wonder, why are genetic mutations only discovered for bad things?  Why don’t geneticists study mutations that make people gorgeous or talented or brilliant? I’d really like one of those instead of the two duds God gave me.

Picture of JAK-2 genetic mutation

My first special genetic mutation

Most polycythemia patients share my first genetic mutation (the JAK-2 mutation).  Polycythemia is a fairly rare disorder that some view as a precursor to cancer. (I didn’t sleep through the night for five months after a doctor casually told me that. Doctors should be more careful about what they say to anxious psychologists with poor coping skills.) Polycythemia is diagnosed more often in older Jewish chaps than younger Jewish lasses like me. But it’s not a common precursor to the cancer I have. Sometimes polycythemia patients end up with acute leukemia, but not my chronic form. So yes, CML is Genetic Mutation #2, a.k.a. The Philadelphia chromosome. I’ve never even been to Philadelphia!

Does this look anything like Philadelphia?

Does this look anything like Philadelphia?

I wonder if any of those 8 other cases–my siblings in blood disorders–have a blood clot like mine, one that compromises their liver. Maybe I am in fact one in 7+ billion. Wow, I’ve taken “special” to new heights. I must be a true medical enigma.

Maybe, just maybe, I have finally found my legacy. Is it narcissistic to hope that someone might one day write a paper about me, Case #9 with Compromised Liver? I long to be a case study. I want doctors to read about me with curiosity and be fascinated by how I have beaten the odds. Maybe this CML diagnosis will finally give me the recognition I have always longed for. We all have to make our mark somehow; maybe I can as Patient X (for Xtra Special) in some well-respected medical journal. Perhaps I should sell the rights to my medical history. New England Journal of Medicine, anyone?  


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