We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a patient advocate from California.
I was diagnosed with Stage 4 Non-Small Cell Lung Cancer in June 2009. I have had numerous treatments of radiation and chemotherapy for the lung cancer, and six cycles of Gemzar for metastasis to my liver. I'm one of the fortunate few because only 16.8 percent ever reach the five-year mark. I'm stable today because of the targeted therapy pill Tarceva that I've been taking for almost five years.
All through my journey I have kept a positive attitude, focused on good nutrition and gotten plenty of exercise. I try to live my life by spiritual principles. I feel they all play an important part in my recovery and the reason that I'm still above ground.
The bad news is that I have cancer. The good news is that cancer has taught me to live life to the fullest. I never allow cancer to define me. I rarely miss an opportunity to hike, bike, or do anything that strengthens my immune system and keeps me out in nature.
In October 2011 I met Penny Blume, the love of my life, on a lung cancer support community on Inspire. Penny left this earth on Jan. 21, 2014 after battling small cell lung cancer for 32 months. Penny and I spent our time together traveling back and forth from New York to California. She passed at my home in Santa Rosa, Calif., after trying one last clinical trial at Stanford Cancer Center.
Penny and I turned to each other for emotional support to battle our cancers and fell in love. It was after a couple of months of texting and chatting on social media that we decided to meet. Penny flew to California for her first visit in January 2012, and the rest is history.
My relationship with Penny also marked the beginning of my advocacy work for lung cancer. It started when a friend of ours asked us to post our story on a lung cancer survivors group on Facebook. I posted something, and then Penny and I decided to repost it on Inspire, since it was the site that brought us together. In September 2012 our story was shared by ABC News and Good Morning America. In the following weeks, it was shared and tweeted all over the world.
My efforts to share our story and talk about lung cancer publicly have only grown stronger since then. I support Team Draft, an initiative of the Chris Draft Family Foundation, which is dedicated to raising lung cancer awareness and increasing badly needed research funding by shattering the misconception that lung cancer is a “smoker’s disease.” I'm also an advocate for The Lungevity Foundation and have attended two of their Hope Summits in in 2012 and 2013 and participated in numerous medical advisory panels. (Penny attended our first Hope Summit in 2012 where we recorded this message of Hope.)
Two years ago I was nominated by Lungevity to be a consumer reviewer for the Medical Directed Lung Cancer Research Program for the Department of Defense. As a veteran and lung cancer survivor I'm particularly grateful I can do my part through the DOD program.
November is Lung Cancer Awareness Month, and it will be a busy month for me: I'm doing events with Chris Draft, Genentech and the Lung Cancer Research Program.
My last promises to Penny were that I would continue to live life to the fullest and advocate for lung cancer research and awareness. One day at a time I try to keep those promises to her.
Don Stranathan is a business development manager for a technology company in Rohnert Park, Calif. who is now on disability, as “fighting my cancer has become a full time job.” When not doing advocacy work, he is at the gym spinning or out hiking, biking and fishing with friends and family.
Previously: Tackling the stigma of lung cancer – and showing the real faces of the disease and A patient’s journey with lung cancer
Photo courtesy of Lungevity