Posted: June 2017
Editor’s note: IASLC Lung Cancer News is committed to including the patient’s voice and experience of having lung cancer as part of our editorial breadth and mission. Here we are pleased to present Deb Violette’s story. A courageous advocate and longterm survivor of lung cancer, Ms. Violette is also the president and CEO of Free Me From Lung Cancer, a non-profit organization committed to making lung cancer a national priority.
I was 44 years old when I was diagnosed with lung cancer. I had presented with recurring lung infections over the year leading to my diagnosis. In April 1998, I started to cough up blood. My doctor told me not to worry about it and put me on yet another round of antibiotics and scheduled to see me later in the week. His words “don’t worry” did not settle me. I knew that there was something more serious than a lung infection. I went to my appointment and was seen by his assistant who after talking with me decided to send me to the hospital to get an x-ray.
My fear was confirmed and I was told I had lung cancer. The ensuing weeks were filled with doctor appointments and testing. Finally, I was informed I had stage III lung cancer. My course of treatment included chemotherapy, surgery to remove my right lower lobe, and radiation. Many thoughts ran through my mind. How do I tell my parents? My stepdad was fighting end-stage prostate cancer. How do I tell my employer? Will I lose my job? Will I be able to work? Will I survive this disease? These are the same questions every cancer patient faces.
Through my journey with lung cancer I knew that more needed to be done to help those diagnosed with the disease. As the days turned into months, I began to get my strength back. I joined a national organization and lobbied Congress for more funding. We were successful in getting money for research from the U.S. Department of Defense. During this time, I have become a major voice in the halls of the Maine State House helping to pass legislation to get funding for early detection, making it illegal to smoke in cars transporting children under the age of 18, supporting proclamations declaring November Lung Cancer Awareness Month, just to name a few.
I have represented lung cancer patients on a variety of panels including Lung SPORE, the U.S. Department of Defense’s Congressionally Directed Medical Research Program, and the International Association for the Study of Lung Cancer Patient Advocate Committee. I currently sit on the Maine Cancer Foundation’s Early Detection and Prevention Committee and Advisory Board member for the Maine Lung Cancer Prevention and Screening Initiative Program. I raised money for a national organization before starting my own foundation in 2012: Free ME from Lung Cancer.1 Our mission is to reduce the suffering caused by a diagnosis of lung cancer by raising much-needed money for lung cancer research, early detection, and prevention. I am happy to say that we have funded over 20 low-dose CT scans for high-risk patients and will be funding our first $100,000 research grant this year.
My journey with cancer has spanned over 19 years. I know the devastating effects this disease has on the physical, emotional and psychological level. I wish I could say that my check-ups get easy with time but they don’t. There is still fear that rises up at appointment time. The “what if ” is always there. But, I will not let this disease define me—I shall define it. My disease has given me strength and shown me my passion, which is to help researchers find better treatment options, help change health care policy, and support those diagnosed with lung cancer and their families.
We have come a long way since I was diagnosed. The treatment I had is different compared to what most lung cancer patients are given today. We are living longer. Our voices are getting stronger and stronger; yet we still have to overcome the stigma long associated with this disease. No other cancer patient struggles with being asked if they smoked. We must stop the shame and blame of the patient for this disease—a disease that takes more lives than breast, ovarian, and cervical cancers combined.
1. Free Me From Lung Cancer website. http://www.freemefromlungcancer.org/ Accessed May 8, 2017.