Becoming an Advocate
Advocacy chose me. It seems I had no say about it when lung cancer entered my life. When diagnosed with my cancer I tried to hide. I did not want anyone to know as I blamed myself for the cancer, after all I was a smoker, right? Wrong. No one deserves cancer.
So much for anonymity
Ignoring my request for privacy, a well meaning family member informed my ex that I was ill. They forgot to tell him the information was to be kept confidential. The ex told everyone he passed on the street about it. As I was extremely active in community projects this became news. I started getting calls. Lots of them.
One of the people my ex mentioned it to took the news to a city council meeting. During the public participation section, he told the council, the public, and everyone watching the meeting on the live webcast that they should “get on their knees and pray for Denise Cutlip because she is dying from lung cancer”. So much for anonymity. I would no longer try to hide, instead, I make a conscious decision to fight the stigma that caused me to want to hide.
Finding my place in the lung cancer community
As a survivor, I discovered a whole new community of people who could use my energy. The people in my new community taught me many things: no one deserves cancer, 20% of those who die from lung cancer never smoked or used tobacco, lung cancer is the number one killer of women and men, it kills more than the next 3 most common cancers combined yet research is funded at the lowest rate of those cancers, and children as young as 9 were being diagnosed with lung cancer. It’s not just an old man’s disease. These are just a few of the lung cancer facts I’ve learned and I need to share them and have made them my message.1,2
At the urging of people I met in my community, I wrote emails to my state and federal representatives. I began educating people I met about the realities of lung cancer and fighting to overcome the stigma. Reaching out to help the newly diagnosed became a bit of an obsession and I would spend several hours of each day answering questions, sharing my experiences, and providing guidance.
Strength and energy returned and as they did I looked for different avenues I could use for advocacy. My new friends travel across the country addressing medical conventions, drug manufacturers, and researchers. They’re blogging for national magazines, appearing in ads, writing books, and starting social media campaigns. I felt like a bit of a slacker. In truth, I’m not and none of that is my style.
Fulfillment as a Link Navigator
Reflecting back and identifying my strengths I recognize that I do my best work in small group settings. When the Cancer Support Community of Ann Arbor started the Link Navigator Program in partnership with St Joseph Mercy Health and the American Cancer Society I signed right up.
As a volunteer in the program, I connect the newly diagnosed and those undergoing treatment with free services within the hospital, the Cancer Support Center, and the ACS. I help to identify obstacles patients might have with treatment and make referrals for services. The program has been successful and in 2017 we received the Michigan Cancer Consortium ‘Spirit of Collaboration Award’ for working collaboratively to improve services in the most underserved segments of our population.
My other duties include meeting with the newly diagnosed patients in the Lung Cancer Multidisciplinary Clinic. For those who are not familiar with multidisciplinary clinics, once a week the doctors who will be meeting with the patients get together and discuss the patient’s options. Then the patients meet with each doctor who will become part of their medical team. This includes meeting the pulmonologist, medical oncologist, thoracic surgeon, and the radiation oncologist and when they are done they meet with me.
Most of the patients I meet have known for a week or so that they have lung cancer. Some have only heard it an hour or two before they meet with me. When meeting with patients I introduce myself I tell them I volunteered for the position because I am an 8 year survivor of stage four lung adenocarcinoma. I want them to understand that this does not have to be a death sentence, that there is hope. There’s a change that comes over them when they learn that this is not an automatic death sentence. Most never knew it was possible to live with a lung cancer diagnosis. They’d never met a survivor before.
Please join us
Have you experienced insurance obstacles in your lung cancer journey?