When I was 13, two of my grandparents died from lung cancer within weeks of diagnosis and within weeks of each other. Then, just six months later, my dad was diagnosed with lung cancer and he died three months later at the age of 41. Ten years later my aunt Dede, who was a second mother to me, was diagnosed with lung cancer, but thankfully it was caught early. A few years later we learned that my mom had too developed lung cancer, but hers was not caught early. She died 6 months later at the age of 54.
After losing my dad, losing my mom was my worst nightmare come true. I was 28 and pregnant with my second child. But I was lucky to have a second mom in Dede. Only, less than a year after my mom died Dede was diagnosed with lung cancer for a third time and she died a year later at the age of 56.
Coincidence or fate, LUNGevity had just gotten off the ground, and I got involved. I had no control over my losses, but my attitude in how I dealt with them was my choice — I chose not to be a victim, rather a messenger. With that simple realization I have worked hard for the past 12 years to raise awareness and money to fund lung cancer research, and doing so has also helped me make sense of of all that I have been through.
The other control I had was to be my own advocate. I didn’t want my four kids to go ever have to go through what I had gone through so I began having CT scans when my mom was diagnosed. All was good until 2009 when the unthinkable happened and I became the patient. Considering my intimacy with lung cancer and being president of LUNGevity at the time, the irony of being diagnosed at 39 years old with the same disease that I literally watched kill both of my parents, and so many others I loved, is still surreal. Thankfully the cancer was caught early, I had surgery, and was considered cured.
In 2009 molecular testing was becoming more common. My resection was positive for EGFR and at the time there was some excitement around using Tarceva as adjuvant therapy for stage I surgical patients who had the mutation, so I went on Tarceva for a year. All was good until 6 months after I stopped taking Tarceva when another cancer was found. In September of 2011, I had a second lung cancer surgery. It was considered another primary and I was again considered cured.
I would like to say that this is where my story ends and I catch a break, but lung cancer doesn’t take breaks. Despite experiencing the stealth of lung cancer many times before, I was devastated 2 years ago to learn the cancer was back, and this time there were multiple nodules growing in my lungs.
I was supposed to be the poster child for early detection, the story of hope. I never did have stage I lung cancer, but the truth is…I am fortunate that my stage IV lung cancer was caught early — I am still a story of hope! While early detection didn’t result in a cure for me, it certainly will make a difference, already has, by not only extending my life but the quality in which I live it because we can ‘manage’ the cancer as a chronic disease, at least for now.
I have since had radiation, but otherwise continue to monitor the growing nodules in my lungs. Since treatment will not cure me, I have decided to hold off on doing any until the cancer starts to really ‘misbehave’. I also continue to tell my story to whoever I can, whenever I can. I continue my advocacy work to raise awareness and critical funds for lung cancer re-search and provide support to patients and their families.
Hope is a word that I never used to associate with lung cancer because in my experience there was only false hope, or no hope at all. But, there have been more advancements in lung cancer research in the past 7 years than the 30 years prior. I have options that my mom, dad and so many others didn’t like targeted therapy and focused radiation. That gives me hope.
To educate and raise awareness and funds for lung cancer research we always focus on the alarming statistics and how the disease is underfunded, but those of us who are diagnosed with lung cancer are not just a disease and we’re not a statistic; we are the true faces, the real stories, of lung cancer, and while each of us has our own personal story, we all really want the same story – a story of HOPE!
It means a lot and I am honored to have the opportunity to go to the Chicago Bear’s game with Chris. The tireless efforts and commitment Chris has dedicated in erasing the stigma of lung cancer and raising awareness about the disease is inspiring. I am so grateful and excited to be a part of his efforts.