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Survivorship Guide for Bone Marrow/Stem Cell Transplant
Coping with Late Effects

Prologue

I would like to imagine that over the years, I have become more expert at navigating uncertainty, at facing my mortality, at living a life that is so different from what I imagined. And for now, I feel lucky and blessed to be where I am – relatively healthy and alive. But I know that all this can change in an instant – a recurrence or another malignancy, a freak accident, or a broken limb. The following parable anchors me and gives me the courage to move on and face the future.

As many of you know, Itzhak Perlman is a famous violinist who contracted polio as a young boy. As a result, he walks with great difficulty and with the aid of crutches. One day, Perlman was scheduled to give a recital at Carnegie Hall. As usual, he came onto the stage with crutches, laboriously walking to his seat. A few bars into the concerto, one of his violin strings broke with a loud popping sound. The conductor stopped the orchestra, and the audience held its collective breath as it waited to see what would happen next. Would someone appear from backstage with a new violin? Would Perlman pull a new violin string out of his pocket? Instead, after a short pause, he nodded to the conductor to resume where he had left off.

The common wisdom is that it is not possible to play a violin with three strings. That evening, Perlman refused to know this. He played the entire concerto on three strings. When the concerto ended, the audience rose with thunderous applause, clapping and stomping and shouting. When the audience finally quieted down, he said:

“It is the artist’s task to find out how much music you can make with the instrument that you have.”

Survivorship is about living life fully with changed instruments: changed bodies, changed psyches, and changed perceptions. We all emerge from our transplant different than we were. Many of us are not as resilient. We may be changed physically or have an altered perception of our vulnerability and sense of mortality. The challenge is to figure out how to live as loudly, fully, and richly as we can, post diagnosis and post transplant. We may not be able to do as much or soar as high as we used to, but survivorship is about finding ways to live meaningful lives as we are today.

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