Advocacy takes many forms and I’m still learning to define myself and my role. In the early phases I was going to set the cancer world on fire. I would educate the masses and make them understand that no one deserves cancer-tobacco or not. The eloquence of my testimony before congress would have them throwing money at lung cancer research. In reality, that’s just not my skill set.
The lung cancer advocacy world is quite diverse. It’s supportive and embracing. Hope is found in obscure little corners. The community is as small and close as your neighborhood and yet it spans continents. It is a world without flags or borders. We’re united by words, thoughts, treatments, after effects, side effects and emotions. When someone has sat you down and in earnest tones said, “I’m afraid you have lung cancer,” your response has nothing to do with language and everything to do with a new language. The fear and shock of this diagnosis permeates every culture.
In the beginning I dealt with this by learning everything I could about treatment options and shared that with others on patient boards. I connected with some amazing people. One group, small in number but large on advocacy raised seed funds to begin research on their next line of treatment when they learned that no one was pursuing anything for their ROS1 mutation. They found a partner in the Bonnie Addario Lung Cancer Foundation who stepped up and found other resources to partner in that next step research. Many I’ve come to call friend have spent hours and days on capital hill as citizen lobbyists for lung cancer research. Still others have addressed the researchers who created the drug that extended their lives. Patient advocates have participated in, and addressed the annual International Association for the Study of Lung Cancer Conferences (IASLC).
The National Cancer Institute of the National Institutes for Health instituted policy changes written and recommended by a group of patient advocates. Obtaining genetic material is one of the greatest challenges for researchers. That shortage has been addressed, in part, by a patient who helped found a program that collects biopsy slides and medical histories of deceased patients.
Advocacy is not the territory of patients alone. Many of those who joined in the activities I mentioned are caregivers and family members. Their impact can’t be quantified. One formed a Facebook Page for lung cancer survivors and families as well as raising money for research before merging her efforts with another group and enhanced the efforts LUNGevity a national nonprofit foundation that raises money for lung cancer research. As social media has gained importance it has become a major resource for all those affected by lung cancer. In addition to the Facebook Page established by my friend at LUNGevity, there is an a wonderful Twitter page called Lung Cancer Social Media or #lcsm. Every two weeks patients, patient advocates, caregivers and clinicians share thoughts, ideas, treatment options and trends in lung cancer. Ideas coming out of this group are helping to shape policy and educate the public.
So where do I fit in? I’ve been given this longer life and it’s up to me to define it and give it new meaning. Long term side effects of treatment and an adventurous life style make it difficult to sit or stand for long periods of time so I only work for a few hours before I give in. Coming from a family that that has long practiced service to community, volunteering at my hospital and my local Cancer Support Community seemed completely natural. For months now I have served as a Link Navigator, a unique program that was established by my hospital, in part to promote parity in cancer services to all patients. This week that takes on even greater meaning for me as I become the Link Navigator in our Lung Cancer Clinic. I will be meeting with patients who’ve just met with their team of clinicians and nurses to learn what their treatment options are. As I bring this essay to a close I’m awaiting consultation with my first patient. It feels like home.
(It’s been two weeks since I wrote this. I’ve no words to describe the gratification this experience brings. I am grateful for the opportunity to do this.)