My Transplant Twin. Some people are in your life all your years and they never really know you.
If you are lucky, a handful of people will enter your life and know you so intimately that your vulnerable, insecure self feels seen, heard, and affirmed. When paths intersect during a fragile, frightening period, that gift is profound. I am so lucky that Kathy Dubin Flynn came into my life at a crucial time and lifted me up in ways no one else could.
Kathy and I marveled that MPNs brought us together when we had so much in common outside the rare blood cancer. We met through the on-line MPN community and I admired her candid, sometimes pithy, posts and comments. When my Polycythemia Vera transformed to aggressive Myelofibrosis and I required an allo stem cell transplant, I sought guidance from those who were ahead of me on the road to a cure. Her first transplant failed within the first six months and she was preparing to go for it one more time in 2013, a few months prior to mine.
We learned that we were the same age; grew up in Michigan in large, rowdy families; and both lived in Massachusetts before settling down to raise our children in warmer climates (Kathy in Texas, me in Georgia). We had the same rare disease, and our male German donors were the same age. She said we entered “bizarro world” and it didn’t stop there. She dubbed us “transplant twins.”
As moms of teens, we worried about the impact our illnesses would have on them. We hated our limitations – from disease and medications – and tried hard to spare our families from our fear, uncertainty, and inability to control much of what was happening.
Kids shouldn’t experience the side effects of parents on chemo and steroids, watch us faint or seize, or be greeted with, “how’s your mom?” every time they go out into the world. Kathy’s love for Sam, Abby, and Hannah is deep and eternal. She shared often about each of them and their special talents.
Kathy and I shared the frustration at how these damn MPNs changed our marriages. When loss of libido becomes the least of the frustrations, you know a relationship is tested. As our bodies changed, so did our self-image. Usually fiercely independent, we struggled with a new reliance on our beloved husbands. Her Jim and my Robert showed valor, patience, and unconditional love during our unpredictable journeys. We weren’t always gracious, even though we were grateful.
Kathy came so far ~ through two transplants ~ when she was punkassed (her term) by a large and persistent glioblastoma. A brain tumor, really??!! That took her down another bumpy road of rare incurable disease. Somehow she summoned the strength to dive in and learn what she could about treatments, trials, and prognosis. When she learned that she once again was “ahead of science” she told me she wanted to do what would give her more time with her beloved family.
This text from Kathy sums up her outlook on life:
“I’ve decided that it’s all really a big ole microcosm of life, which is pretty darned risky no matter how healthy someone is. You get to either live in fear, or keep trudging forward, taking on all of the risks while you enjoy life and live it up as best you can, right? No point in opting out of the scary stuff.”
My dear transplant twin took an exit off this road of life much too soon. She leaves behind rich memories with everyone who was fortunate to know her. Her legacy is what we all hope for: that the world is much better because she lived.
© 2016, MPNforum. All rights reserved under Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License
MPNforum Magazine 
Comments on: "Marina Sampanes Peed remembers KDF" (2)
Now how could I forget Cyndy Morreale before I hit SEND.
Marina is so right that we have met amazing inspiring people through the adversity of having a MPN. My life has been enriched to beyond anything that I could ever comprehend. I became a better person because of personal relationship with Kathy, Marina, Anne, Genny and Marina.