“There is no greater agony than bearing an untold story inside of you.” ~Maya Angelou
November is Lung Cancer Awareness Month. On the heels of a very pink October, it’s a tough act to follow, even though lung cancer kills more women each year than all female cancers combined! I used to be bitter and angry about it, but the way I felt wasn’t going to change anything. I could hear my mom’s voice in my head saying, “You have no right being upset about something you haven’t tried to change!”
So that is exactly what I did. In 2001, shortly after we moved from the city to the suburbs, coincidence or fate LUNGevity Foundation had just gotten off the ground and a friend suggested I attend a LUNGevity Fall Benefit meeting. With the loss of both my parents, two grandparents and my aunt to lung cancer, it didn’t take long to realize that LUNGevity was exactly what I needed.
LUNGevity was the first organization in the country dedicated exclusively to lung cancer research. There is both a lot of excitement and a lot of pressure that comes with filling a badly needed niche. My role as a volunteer evolved pretty quickly. At first I helped with organizing and fundraising for the Fall Benefit, my cousin and I started a golf outing and in 2002, I joined the Board, and then I served as vice president, president and chair before I stepped down a few years ago.
LUNGevity empowered me, gave me control and provided me with the opportunity to choose what role lung cancer was going to have in my life. No amount of therapy could have given me the power and control to work through all of my losses like my involvement with LUNGevity.
And then ‘patient’ was added to my lung cancer resume. I continued to fundraise for various events. I was speaking at more LUNGevity events across the country and at medical conferences. I started to write blogs and talk to newly diagnosed patients and their loved ones.
But, after a second surgery and then learning that lung cancer would be a lifelong roller coaster ride for me, I took a step back. I thought it would lessen the burden on my husband and kids. Boy was I wrong! I fell into a cancer depression, feeling helpless and hopeless. Once again I had no control over the disease, so lung cancer was solely my illness; all consuming, negative, depressing and scary!
Right around that time I was gently forced (actually I couldn’t say no) to actively participate in a local event. Again, LUNGevity was exactly what I needed! I was reminded that nothing was going to happen, or change, unless I did my part to make it happen. I have a story to tell that has, and continues to, raise awareness, critical funds for research, give hope to others and make a difference!
This past year my efforts reached outside of fundraising. Below are some of the ways LUNGevity helped me take action:
* I spoke to over 1,400 people in my own community at Breathe Deep North Shore.
* Pfizer used my story on their Lung Cancer Profiles website and I did an interview with WegoHealth to raise awareness.
* My kid’s high school chose LUNGevity as the recipient of their annual fundraising drive (which resulted in $135,000 raised), and by sharing my story, 2,000 teenagers now know that lung cancer can happen to anyone and that funds are desperately needed to save lives.
* I attended LUNGevity’s Hope Summit and was honored to share my story and experiences as both a caretaker and a patient with other lung cancer patients.
* I attended National Women’s Survivor Conference in Nashville and shared my story with 1,000 women survivors of all cancers.
* Just last week I spoke to Astellas’ Oncology group (the pharma company that makes Tarceva) and put a face to all the hard work they do to better the lives of cancer patients.
* LUNGevity nominated me to be a consumer reviewer for the Department of Defense Lung Cancer research program. I just finished the online panel, and in December I will be going to Washington DC for the onsite panel.
* I continue to support newly diagnosed patients through LUNGevity’s Lifeline online program of matching.
I know the words volunteer and advocate can be overwhelming, but they don’t have to be. I always tell people who are hesitant to get their feet wet to first attend a meeting or an event in their area, go on LUNGevity’s website and snoop around, connect with another patient through lifeline, or I suggest caregivers visit the caregiver resource center. Get involved in a way and at a pace that feels good to you.
Being an advocate is not always easy. Fighting lung cancer is an uphill battle and some days feel like two steps forward then one step back. But the reward has been knowing I have helped others in their journey and that I helped create a community of people who understand and don’t judge ~ and the community we built is a force to be reckoned with! And personally, I can look my kids in the eyes and know I did everything in my power to fight this disease for me and for them.
I am honored that I have had the opportunity to play a critical role in the profound impact that LUNGevity has had over the past 12 years. Conversely, LUNGevity has played a critical role in my personal growth. Being an advocate has helped me make sense of all that I have been through and gives it meaning.