The Story of Founding “Yes” by Executive Director: Suzanne Lindley

Suzanne Lindley - 'Survivor'

Cancer.

Stage IV colon cancer.

Eleven years ago these were words that filled my life with fear.  They evoked thoughts of suffering. A bald head. Nausea. Fatigue. And even death.

In the years since those words and my life first intertwined, I’ve learned that other things cause greater fear, that suffering is not what I’ve done, that bald heads can be covered – or proudly displayed – that nausea can be prevented, that I’ve accomplished more things since cancer than before, and that cancer; no matter what stage, can be survived.

I didn’t learn these things on my own.  I’ve been surrounded by support almost from the beginning. Through the ACOR list-serv and friends traveling the same path as me, American Cancer Society (cancer.org), Colorectal Cancer Coalition (fightcolorectalcancer.org), Imerman Angels (imermanangels.org), LiveSTRONG (livestrong.org), National Coalition for Cancer Survivorship (canceradvocacy.org), Survivor Celebration (survivorcelebration.com), and now from Voices of Survivors (voicesofsurvivors.com) I’ve learned the importance of self-advocacy and of sharing experiences.

When I was first diagnosed, only one treatment existed for colon cancer and it had been around for forty-five years. Without guidance from an ACOR list-serv friend my journey would have ended there. Instead, I grabbed hold of that one and only treatment and was lucky to see the introduction of five more chemotherapies, to experience clinical trials, and procedures like Sir-spheres, cyberknife, and RFA along the way. Each new treatment has been a stepping stone to the next providing me with valuable time to reach milestones, make memories, and set new goals. I’ve become accustomed to telling a private story in very public places. I have climbed the Capitol steps, walked the halls of Congress, and have even testified.  I’ve discussed the importance of NCI and NIH funding, the need for colorectal cancer screening, continued Medicare coverage for brachytherapy, care plans with the Comprehensive Cancer Care Improvement Act, and for access to “the right scan at the right time.” My life has been touched by literally thousands of other survivors.  We’ve battled in the cancer trenches together.  We’ve shared life experiences, options, resources, and a whole lot of hope.

At one point, the tumors in my liver were growing out of control. My oncologist felt that we had run the gamut of options and suggested hospice.  It was through a friend that I learned of Sir-spheres, was able to receive the treatment, and take a step back and move forward with more treatment.  We wanted others to know that treatment options exist even after cancer has spread to the liver and that sometimes second, third, and fourth opinions are necessary.  We started talking about how we could offer support. Then, while attending the Inaugural Livestrong Summit, I wrote my personal action plan.  YES was created. The mission of YES (beatlivertumors.org) is to provide information, education, support, options, and hope for those affected by liver tumors. YES is a growing community of survivors and their family members, physicians, nurse professionals, and researchers who care and act on these issues.  We want to arm everyone with the tools necessary to be a good advocate; for themselves and for others.

Because I’ve learned to self advocate I’ve lived as fully as possible and do so without regret. I’ve searched for other opinions and new treatments, shared my story with others and learned from those who have shared in return. I’ve vowed to never give up and never say never. Little things in life that would have once caused stress are now overlooked. Small triumphs are often celebrated as great victories.  There is a miracle in every breath I take, magic in every moment I survive.

I watched eagerly last year as Lynn launched his first few survivor voices and I felt empowered.  I knew immediately that he had touched on a missing piece of survivorship. Voices of Survivors gives all survivors and caregivers a forum to share hope, inspiration, and encouragement. I’m proud to be a part of that!

One voice can change the world. Voices of Survivors are not only changing the world, but creating hope around the globe.  Share your voice today!

This is just the beginning……..

This entry was posted on Thursday, October 29th, 2009 at 9:12 am and is filed under articles and tagged with Cancer, Colon Cancer, Survivorship, Suzanne Lindley, Voices of Survivors.