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Message from the President of LUNGevity


KatieB

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Jill's speech last Saturday night...

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Hi everyone, this year I am speaking to you as a survivor, not as the president of LUNGevity, and my story is a bit complicated, so please bear with me. Even though my own diagnosis is less than a year old, I consider myself a survivor of lung cancer for 27 years. “Survivor” is a funny word, because it has two very different meanings. It can refer to those of us who battle the disease, or it can refer to family members and friends of those battling the disease. My own experience as a survivor—in both senses--began when lung cancer first chose to pick on my family.

Thank god for humor all these years. In fact, Jason, the kids and I were watching a New York Giants football game a few weeks back and we were talking about the Manning family and how football is their legacy, it’s in their “blood.” My nine year old asked, what’s in our family’s blood? Leave it to my seven year old to say “lung cancer!” You learn to laugh at these things, but what seven year old would say that?

When I was 13, two of my grandparents died from lung cancer within weeks of diagnosis and within weeks of each other. It was terrible. Then, six months later my dad was diagnosed with lung cancer. In the blink of an eye, my world was falling apart. And, when he lost his battle three months later at the age of 41, my world shattered and life was never the same again. We were lucky to have a 10 year reprieve, but then my close aunt Dede was diagnosed with lung cancer. It was discovered early and after surgery she was considered cured. It looked like we had caught a break. But, two years later, just 5 weeks before my wedding, Dede was diagnosed, not with a recurrence, but with another primary tumor in her other lung. Again, it was caught early and she had another surgical cure. We caught another break. Two years later, when we half expected something to show up on Dede’s scan, it was clean. We celebrated the good news--but not for long. That’s when we learned that my mom, too, had developed lung cancer, only my mom’s was inoperable and it wasn’t long before we knew we weren’t going to catch a break this time. As Dede said at the time, her sister had taken her bullet. 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, nine weeks pregnant, and had a 15 month old. I couldn’t fathom life without her. But I was lucky to have Dede, who quietly assumed responsibility of my family. Only, less than a year after my mom died, Dede was diagnosed with yet another primary tumor in her lung. Once again, it was small and detected early, but this time there was no surgical cure. She had lost too much lung tissue in the first two surgeries. Another surgery would have left her severely disabled. We helplessly watched that tiny lesion spread throughout her body and kill her at the age of 56.

I had a really hard time finding humor in anything at this point so I had to find a way to transform my fury against lung cancer into a positive way to help others. I had no control over my losses, but my attitude in how I dealt with it was my choice. In order to move forward, I had to look beyond what lung cancer had done to my family and see the bigger fight. Coincidentally, LUNGevity had just gotten off the ground and a friend introduced me to Missy Zagon, who was one of the founders. I got involved, and for the past eight years I have gained some control over my losses because LUNGevity has empowered me to make a difference, to help in the fight against the disease that wouldn’t leave me alone!

The other control I had was to be my own advocate. The thought of my children ever having to endure the pain and sadness that’s still heavy in my heart was too much. Because of my disastrous family history, I began having regular CT scans when my mom was diagnosed in 1998. My first two were crystal clear, but in 2006 there was a suspicious lesion the doctors wanted to watch. For some reason I wasn’t worried. I conveniently had my brother’s pulmonologist, who happens to be one of LUNGevity’s medical advisors, look at my scans when I accompanied my brother Tony to his appointments. Because of Tony’s severe emphysema, I was always worried about something showing up on his scan, so, I was hardly prepared, last December, to hear that it was my scan that looked ominous. I’m still in disbelief. I had been going with Tony every six months for eight years, preparing myself each time, to hear that HE had lung cancer. Not ME!

I was anxious about telling my husband and family; really, how many times does one family have to hear “It’s lung cancer?” Even with a good prognosis, the words are devastating. And, having to tell my kids? I couldn’t even look them in the eyes without feeling sick. A parent wants to protect their children from those awful things “they can only imagine how would be devastating.” I could do more than imagine, because I had lived it! At 12, 10, 8 and 6, all they knew of lung cancer was my family history and our close friend Missy. So for them, lung cancer simply meant death. Like my older two, I was in middle school when my dad was diagnosed, so I remember the fear and anger and I can identify first hand that defining moment when your world is no longer safe. My kids ask if I will get lung cancer again and if I will die. They ask if I am scared, if I miss my mom and dad and they ask if they are going to get lung cancer. I do the best I can without lying, but, to see lung cancer steal their innocence, as it did mine, is heart wrenching.

I had an upper right lobectomy in January. I got a chance that my mom, dad and so many other lung cancer patients didn’t – IT WAS CAUGHT EARLY! I’ve been on both sides now and it’s different, but not much. I am only now defined as a “lung cancer survivor,” but as I mentioned before, I have been a lung cancer survivor for 27 years! The disease only recently invaded my lungs, but it has relentlessly tried to kill my heart and my soul time and time again.

There were, and still are, times I want to crawl in a hole, but when I come out I have two choices. If I dwell on my tragedies, and now my own diagnosis, I will let lung cancer win. I choose to look forward.

Anyone touched by the cruelty of lung cancer is a survivor and we all need to look forward. I initially got involved with LUNGevity because I was horrified that there weren’t any new lung cancer treatments available in the fourteen years between my mom and dad’s diagnosis. But in the last seven years, thanks to your support, there has been tremendous progress with great advancements, hopeful trials and new treatments that have shown promise. But there’s still a lot of work to be done and it’s up to us to continue the momentum, so more people get the chance that I got, they can live to raise their children and ultimately, so those children will never have to receive a lung cancer diagnosis of their own.

While my prognosis is great, I am still at a higher risk of more lesions in other parts of my lungs. I’m watched closely, and surgery is still the best shot at a cure for early lung cancer. Finding it early is important, but as we learned with Dede’s story, there are only so many surgeries one can have because there is only so much lung you can remove. I may be living my family’s legacy, but with your help I can beat lung cancer. So, when I tell you that the money you donate tonight could save my life one day, it’s real.

Last year I asked all of the lung cancer survivors to come to the front of the room so we could see the faces of lung cancer and thank them for their courage, dedication and determination. Little did I know I would be one of them I would again like to ask all survivors that are battling lung cancer to join me.

We represent lung cancer survivors across the country; we are fighting for our lives and fighting to give lung cancer research the attention, respect and funding it deserves.

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