In early 2010, after several months of unintended weight loss and increasing joint inflammation and pain, I developed a cough. Just hours after being told my cough was caused by acid reflux, I began coughing up blood. At the age of 46, I was diagnosed with stage 3A lung cancer. My husband was somewhere between Afghanistan and Kuwait when I got the diagnosis. Joyful homecoming became heartbreak when he heard the news. In the days after his return home, we faced the horrible task of telling our five adult children that I had the same disease that took the life of their grandfather a mere month after his diagnosis. "I will beat this," I promised them. When I said it, I didn't realize the odds of beating lung cancer were not very good and that "beating" lung cancer would continue long after I had no evidence of disease in my body.
Shortly after my diagnosis, while in the waiting room of my local hospital, I visited a cancer information table sponsored by a prominent cancer organization. The volunteer enthusiastically filled my hands with pamphlets describing services that were available to me as a patient. As we talked, and it became apparent to her that I had lung cancer, she reached out, took the pamphlets from my hand, and said, "You're not eligible for these services." Whether she was speaking for the organization she represented or from her own bias didn't matter to me. Her actions ignited my commitment to become an advocate for the lung cancer patient.
My treatment consisted of a series of concurrent radiation and chemotherapy, followed by surgery, followed by another series of chemotherapy. During my chemo infusions, I spent hours researching lung cancer advocacy organizations and I decided I wanted to work with the National Lung Cancer Partnership. Five days after my final treatment I celebrated with my first advocacy event, a 5K walk benefiting the Partnership. In the three years since that inaugural advocacy effort I have had the privilege of serving on committees and advisory panels for the Partnership. I work with the American Lung Association, locally and regionally, as a speaker and volunteer. I serve as a patient advocate for the American Thoracic Society. I've engaged local and national media and politicians on topics of lung cancer stigma, awareness, and research funding disparities. And I work personally and virtually with other lung cancer survivors and their families to offer encouragement, information, and friendship.
In 2012, the National Lung Cancer Partnership nominated me to serve as a consumer reviewer for the DoD Lung Cancer Research Program. I am an accountant, not a scientist, so I knew this would be the most challenging work I have done as an advocate. As part of the online peer review process I spent a lot of time reading and re-reading the assigned research proposals, looking up words and concepts that were foreign to me. Though most of the peer review work is done independently, I wasn't alone. I had a scientific advisor available to explain science that confused me. And, equally important, I had a mentor, an experienced consumer reviewer, to encourage me when I was feeling overwhelmed. At the end of the review process, reading the scientific reviewer's comments, I occasionally saw comments remarkably similar to my own. It was then that I realized the consumer reviewer's input, whether it mirrors the scientific experts' or not, comes from a distinctive and vital expertise, the experience and perspective of the patient. I am incredibly honored to have participated in this process, knowing that the science I struggle to understand could very well be the key to "beating" lung cancer.