Just as I was retiring and moving across the country from New York to the Seattle area, the first hint of something amiss was blood-tinged mucous in the sink when I cleared my throat one morning. Being the hypochondriac that I was, I went immediately to my primary doctor, who sent me to an ears, nose, and throat (ENT) specialist. The ENT doctor sent me for a chest X-ray, which I had the same day, only to be called back for a CAT scan of my chest because there seemed to be a node on my chest in the X-ray. I was told to follow up with a pulmonologist and that cancer could not be ruled out. Wow. I was incredibly anxious now, but after a negative bronchoscopy and repeat scans, I was told that I didn’t have cancer and nothing had changed on the scans — until almost one year later when I experienced severe neck pain. After more doctor visits, it was determined that that “node” in my chest metastasized to my C4 bone. Surgery, bone replacement, and biopsy of this bone confirmed I had stage IV EGFR-positive lung cancer (mutation of the epidermal growth factor receptor gene), even though I was a never-smoker.

It was then that everything changed to “before cancer vs. after cancer.” It was a very rough time emotionally, coming to grips with the fact that I now really had an expiration date. I wasn’t going to live forever – a tough pill to swallow! After getting counseling and joining a cancer support group, I got my “cancer legs” and proceeded to learn as much as I could about my lung cancer so I could be my best advocate when it comes to treatment decisions.

Other ways that I “battle the beast” is to advocate for lung cancer awareness and research funding. I now communicate regularly with my U.S. Senators and Representative on lung cancer research issues and funding; I joined the EGFR Resisters Facebook group and volunteer as their media lead and newsletter manager; participate yearly in the GO2 Foundation for Lung Cancer’s Advocacy Summit as a state leader; and am a consumer reviewer (nominated by LUNGevity) for the Lung Cancer Research Program (LCRP) within the Department of Defense’s Congressionally Directed Medical Research Programs.

Participating in the LCRP has been a challenging and rewarding experience. Although I always avoided taking science classes in college, I now find myself swimming in biology and clinical terminology. Cancer is a very tricky disease that always seems to outsmart treatments eventually. However, it is very empowering being a consumer reviewer, getting to see what may be coming down the research pipeline and being able to have an impact on what research gets funded. There are so many innovative and strategic ideas that I get to read about and review from the patient’s perspective. I sincerely hope that these efforts, sooner than later, help lead to a cure for lung cancer or a way to live with it as a chronic, not terminal, disease — as I have a very cute new grandson in Chicago who I want to see grow up.

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of the Army position, policy or decision.