By Jill Feldman

My story began 32 years ago and is a bit complicated (and kind of like the awful gift that keeps on giving) so please bear with me.

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.  In the blink of an eye, my world changed, and three months later, just days before my 8th grade graduation, my dad died 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, two years later Dede was diagnosed with lung cancer again, and it was caught early. Two years after that we celebrated Dede’s clean scan –but not for long.  That’s when we learned that my mom had developed lung cancer, only it wasn’t long before we knew we weren’t going to catch a break this time.  My mom 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. The fear and anxiety was unbearable, 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. 

My family has always used humor to cope, but I was having a hard time finding humor at this point. In fact, I was bitter and angry. Coincidence or fate, LUNGevity had just gotten off the ground, and I discovered my secret weapon, ‘choice.’ I had no control over my losses, but my attitude in how I dealt with them was my choice and I chose not to be a victim, rather a messenger. With that simple realization I worked hard for the past 14 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 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 with lung cancer at 39 years old is still surreal. It’s that part in a movie where you start to question the reality of the plot…Thankfully the cancer was caught early, I had surgery and was considered cured.

I knew I was at high risk for another cancer, but there was nothing I could do to lower my risk. As my husband Jason and I, along with our kids Jack, Shae, Meg, Maya, let our guard down and adjusted to our new ‘normal,’ lung cancer continued to stalk me. In September 2011, I had a second lung cancer surgery. Now your at the point in the movie where you actually doubt the reality of the plot… I was grateful that it was again caught early and all I could do was hope that lung cancer would leave me alone, at least for a while.DSC_9189

I would like to say that this is where my story ends and I catch a break, but lung cancer doesn’t take breaks – it’s relentless. Despite experiencing the stealth of lung cancer many times before, I was devastated to learn the cancer was back just a few months after my second surgery, and the icing on the cake was that there were multiple nodules growing in my lungs. I knew what that meant, and I had a hard time wrapping my brain around the reality that I had stage IV lung cancer, and switching my mentality from ‘cure’ to “manage” was not easy. This is the point in a movie where you shake your head and think to yourself, or even say to the person you are with, “Come on, this would never happen in real life.”  Except, it’s real and it happened in my life!

I was supposed to be the poster child for early detection, the story of hope. I was so upset so it took a while, but I had to re-frame my thinking and accept that I never really had stage I cancer, but the truth is…I am still a story of hope. I am fortunate that my stage IV was caught early. While early detection didn’t result in a cure for me, it certainly has made a difference, by not only extending my life but the quality in which I live it. I have had three cancers treated with radiation over the past three years, which has allowed us to ‘manage’ the cancer as a chronic disease, at least for now.

I don’t like to feel vulnerable, but there is no escaping the emotional lung cancer roller coaster and while I have been humbled by the ride, I needed to find peace. A positive attitude approach has never been for me (I am too realistic and pragmatic). I found that my greatest weapon against fear was changing my mindset; that is something I can control. Our thoughts control how we feel, act and behave, and thinking about ‘what could be’ was very punitive. It is a lot of work and exhausting at times, but each day I try to consciously embrace and believe in my ‘what I know today’ mindset. It doesn’t always work, and the fear and distress never go away, but it is bearable because my beliefs are sustained by my hope. The hope I have is real because I can now recognize that hope is relative, and I now think, and believe, that hope means so much more than simply a ‘cure’ for lung cancer.

Hope is a powerful force.  It means different things to different people at different points in their journey. I have been fighting lung cancer indirectly and now directly for 32 years, and for 18 of those years my family and I fought lung cancer without support, without a fighting chance! That is why I am overcome with so many emotions when I see and feel the undeniable strength, love and spirit that is woven together and wrapped around each person; it is firm and fierce.  That is hope — knowing you’re not alone and believing that nothing, even cancer, can defeat the human spirit.