Jasan Zimmerman, neuroblastoma and thyroid cancer survivor

"Becoming involved in the advocacy community has not only allowed me to make a positive impact, it has also helped me come to terms with what I’ve been through and has made it less painful."

My experience with survivorship starts in 1976.  I was diagnosed at 6 months of age with neuroblastoma of the left neck.  The tumor was excised and I was treated with radiation.  I had regular checkups every 3 months until I was 5, and every 6 months thereafter.  When I was 15, I was diagnosed with thyroid cancer, most likely caused by the radiation treatment for the neuroblastoma.  I had a thyroidectomy and more radiation.  Six years later, just after turning 21 and graduating from college, a recurrence of the thyroid cancer was detected.  I was treated with still more radiation and given a clean bill of health.  In the 11 years since, I've had some scares, but I'm otherwise healthy.

It took more than 25 years for me to be able to speak freely about my health history.  Something finally clicked in my mind and I realized that I needed to share my story to provide hope and inspiration.  It was with this in mind that I entered the world of advocacy.  I joined a young adult patient and survivor support group called Healthy Young Attitude (HYA).  I didn't really speak for the first year's worth of meetings, but then I became more comfortable and sought out new ways to get involved.

I attended the inaugural Lance Armstrong Foundation's LIVESTRONG Summit in 2006 and was amazed to learn about the many great programs and organizations that were involved in cancer advocacy.  I became inspired and searched for more opportunities to become involved.  In August, 2007, I attended an informational meeting for The Wellness Community Silicon Valley (TWCSV), and I joined their Board of Directors a month later.  Being involved with TWCSV has given me a broader audience with which to share my story to bring awareness to the organization, childhood and young adult support, and long-term survivorship issues.  TWCSV is scheduled to open its doors in January of 2009, so I've also been able to be a part of the behind-the-scenes work, from fundraising to spreading the word about the importance of psychosocial support. 

Becoming involved in the advocacy community has not only allowed me to make a positive impact, it has also helped me come to terms with what I've been through and has made it less painful.  I'm still becoming comfortable with sharing my story, but it gets easier every time.  In the future, I would like to continue to share my story, both through speaking and writing.  I enrolled in a writing workshop at the Stanford Cancer Center called Writing Through Cancer.  Writing has been a great outlet for me to explore many of the repressed feelings that I have accumulated in my lifelong battle with cancer and its aftermath.

I would also like to get involved in survivorship research both to help myself and the long-term survivor community as a whole.  I would even like to get involved with advocacy at the national level by participating in Capitol Hill briefings and meeting with my congressperson to provide education and enlightenment about childhood and young adult survivorship issues. 

I'm making up for many years of lost time by trying to get involved with as much as I possibly can.  I'm glad that I'm now more comfortable with sharing my story and have become involved in the cancer advocacy community.  I hope to continue on that path, and in doing so, help other patients and survivors as well as myself. 

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