In late 2006, I had a testicular cancer scare as a result of a new circulatory imbalance.
On March 18th, 2007, within a span of 3 days, I lost all hearing in my left ear. The pianist who once lost the use of his left hand is now unilaterally deaf. The diagnosis? "Sudden Sensory-Neural Hearing Loss", a rare condition that my oncologist confirmed with me is, without a doubt, 100% connected as a long-term side effect of my postoperative brain radiation. Essentially, my cochlea stopped working. Given it's location to be within millimeters of my tumor and the subsequent stereotactic gamma rays which beamed through my brain, I suppose it was only a matter of time before it gave out.
I can only imagine what may lie ahead but it is with utmost certainty that I will continue to be able to say, "I am still here."
Is this what it means to be a cancer survivor?
And yet, more good came from this.
A decade of experience and reflection and dissatisfaction yielded the birth of Steps For Living, a nonprofit support, communications and social advocacy agent for young adults with cancer whose goal was to use music and the arts to create lasting change in how the public relates to cancer. I founded this organization because I believe that this orphaned age group within the cancer continuum stands the most to lose without proper diagnosis, adequate targeted treatment, access to quality care, long-term follow-up programs and social networking support as they have the rest of their lives to reconcile the trauma, move forward and confront whatever ramifications (physical, spiritual, financial, emotional, practical) that may foster in that wake.
In our small, niche world, we're a hit. And we're making a difference by fostering connections, building communities and reversing the feelings of isolation faced by so many.
The past eleven years have played out for me as an orchestrated symphony of odd medical issues and rare, unique chronic health conditions all baffling physicians, defying conventional wisdom and wreaking havoc on my perception of being 'cured'. I am certainly not alone.
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