Not long after I received a metastatic lung cancer diagnosis in 2017, I learned about the health disparities surrounding lung cancer treatment and the lack of federal funding available for research. I also learned how lung cancer stigma and the mistaken belief that only smokers get it can create barriers to research and treatment. There were lots of statistics coming up in my frantic Google searches about lung cancer, especially ones about the low survival rates of people diagnosed with the disease. At the time, the terrain of Lung Cancer Land I'd just entered looked foreboding and grim.
And then I got a phone call. The voice on the other end of the line belonged to lung cancer patient advocate Patty Watkins. She was the best friend of the mother of friend of mine, and that friend had asked my permission to put us in touch. At the time, all I knew about Patty was that she too had lung cancer. As it turned out, that phone call was the beginning of a friendship that quite literally was a lifeline. Not only was Patty living with Stage IV lung cancer, she'd been doing that for six years! She was, by most accounts, an outlier in her extraordinarily long survival at a time when folks with late stage diagnoses were often living only months into the diagnosis. And in that time, she had become a fierce patient and lung cancer research advocate. She knew everyone doing all the important advocacy work in the LC community, and she'd raised thousands of dollars for lung cancer research. Months later she saved my life by insisting I enter a clinical trial in Boston. And she and other folks I met through her encouraged me to get involved in lung cancer research advocacy. Sadly, I lost my friend and mentor to that horrible disease in 2024, after she had lived over 13 years with the disease! I like to think Patty left her fighting spirit behind with those of us who were inspired by her constant striving for better lung cancer patient outcomes through research, new and better treatments, and, someday, a real cure.
During the years since my own diagnosis, I have participated in lung cancer patient and research advocacy through various organizations like The ROS1ders, the Lung Cancer Action Network, Lungevity, and The GO2Foundation. This summer I accepted a position as Tennessee State Coordinator for LiveLung, a lung cancer patient support and education nonprofit. LiveLung provides excellent educational opportunities for patients, as well as beautiful support communities both in-person and online. Now my advocacy efforts are focused intensively on my own community here in Nashville, where I am building a support network of patients, caregivers, and lung cancer treatment providers. We'll be meeting monthly in person, and cheering each other on through all the challenges and traumas living with lung cancer throws at us.
If you have lung cancer, or you know someone who does, please reach out to us. You can learn more about LiveLung here: LiveLung.org , and register for our monthly meetings, which feature guest speakers and include lunch. We're here for you!
