In 2003, when my son was 3 years old, the doctor found a 'shadow' on an x-ray of my lung. It was small but it grew. I spent the next 4 months trying not to think about my impending death. My major goal became to live long enough to walk my son to school on his first day. Cancer has a way of making your dreams small.
In June 2003, I had a double lobectomy and was staged 1A. They told me I was lucky - I had a fighting chance that the cancer would not come back. But, the world as I knew it was suddenly turned upside down. My breath would stop at random moments as I remembered I had cancer. I went to a new dentist and saw the word "cancer" as if for the first time on the medical history checklist. I put a check mark in the box and it looked huge.
I joined an online support group of lung cancer survivors. They supported me, they became wonderful friends, these people who I never met in person. I never expected most of them to die, but, one by one the world lost them without ever really knowing how big a loss it suffered. When I brought my son to school that first day, or prepared for holidays, bought another car, or got promoted at my job, as I tried to believe through the years that maybe, just maybe, I would live and the cancer wouldn't come back, these wonderful, caring people kept running out of treatment options and dying.
I became involved in advocacy in small ways, first and foremost, by never backing down from saying that I had lung cancer. At a local fair, where I staffed a lung cancer advocacy booth, I met countless cancer survivors but NO lung cancer survivors. They just were not there! I've been in local papers, I've spoken at a lung cancer walk, participated in several walks, and supported other lung cancer patients. I recently attended the National Lung Cancer Partnerships' Advocacy Summit so that I can better serve the cause. I try to stay involved even when it feels like doors are slamming in my face.
I joined the Department of Defense Lung Cancer Peer Review Panel after being nominated by LUNGevity, participating the first year through the online program. I had 21 proposals to review, and the words were foreign to me, but after reading the proposals over and over, they started to make sense. I had a mentor who helped me with any questions I had. It was a sobering responsibility to review proposals; I could get goose bumps just thinking that one of these investigators may, one day, be the person who finds a cure.
For the next review, I attended the Peer Review in person. Flying to Washington, D.C., I felt intimidated. I knew that I was going to be on a panel with Oncologists, Radiologists, Researchers, Scientists, and Surgeons. What could I contribute to the discussion? I felt so out of my element and thought I would be "found out" as the imposter I believed I was. I wondered how condescending these people would be, but the experience turned out to be one of the most rewarding of my life. The DOD staff treated us wonderfully. Furthermore, any worries I had about my dubious intelligence disappeared the first day on the panel when the esteemed scientist sitting next to me couldn't find the "back" arrow on his browser. That brought a realization that we all have areas of expertise in our lives. The consumer reviewers' experience makes us our own brand of expert. Overall, it was such an honor to serve on a panel comprised of people who shared my passion, and anger, toward this disease. I realized I had been self-centered. I always thought that lung cancer survivors and their families are the only ones that care, that we are in this fight alone. At the peer review, I learned that armies of people out there care.
My son graduated from elementary school this June, and the moment he walked on stage was my moment of complete victory over a disease that does not like to lose. Even in my triumph, lung cancer was not far away. I learned that morning of the death, following a 5-month battle, of a 38-year-old mother of two small children. The losses never stop.
In the 7 years since I started this journey I have seen change: New treatment options are out there, or in trials. We must continue to fight public ignorance about a disease that kills 30,000 more women than breast cancer every year and has a 16% survival rate compared to 89% for breast cancer. We must continue to not just ask, but scream for funding. We must stand up and be counted. As much as we may want to forget that we ever had lung cancer, we cannot. There are not enough survivors for that luxury. Our time is coming at last, and we must continue to make noise.