It’s been 8 years.
And hindsight is 20/20.
I wish I would have known the right questions to ask, how to seek out available treatment options and I wish there would have been resources to help us through the most difficult times of our lives. But from the moment of diagnosis, it all unfolded so quickly…we were inside of a tornado that turned our lives upside down for 11 months and 21 days. At the end of that time, there were many who were critically injured emotionally and there was one fatality.
When my dad was diagnosed with extensive stage small cell lung cancer, I was 29 years old. I was married with a preschooler. I had gone back to school full-time and was making a career change getting my paralegal certification. To say my hands were full was a severe understatement.
Suddenly, the one person in the world who loved me unconditionally had a terminal disease. I was thrust into a world of oncology and testing and chemotherapeutic agents and radiation that caused severe side effects and nausea. There were no support groups. We felt as though we were going through this nightmare alone and felt like no one cared or had compassion for someone with lung cancer.
Life as all of us knew it changed forever.
At day 12, I swept away his hair as it began to fall out. Later we cut and shaved it because it was just a mess, emotionally difficult, and it just hurt. The hairs on top of his head physically hurt.
Lung cancer is mean. It can destroy so much so quickly. Your life and circumstances, your mind and your body, your relationship with yourself and others…can be affected, destroyed or damaged in many ways.
I watched the strongest man I knew, who had never been sick a day in his life, slowly wither and succumb to the cancer and the harsh treatments he had to endure.
He’d spend his days lying on the sofa following chemo. I would sit on the floor beside his head. I’d give him a gentle hug or kiss the top of his bald head and we’d just sit quietly. Sometimes I’d read him hopeful stories of other cancer survivors. Most times we’d watch a re-run of MASH or CNN or the cooking channel.
By the time we’d cook him something to eat, his appetite would be gone. With so many medications and with the nausea and fatigue that never ended, his appetite was fleeting. I filled the coffee table with bite-size pre-packaged foods and silently prayed that he’d nibble on something because he had gotten dangerously thin. Each bite I saw him take was like a little touchdown victory.
My dad was the strongest person I’d ever met. He never wondered out loud, why me? While he would wince as his veins collapsed from the weekly blood draws and IVs, he never complained to us.
None of his treatments worked. He experienced every adverse side effect. He couldn’t catch a break. He didn’t have a fighting chance…
Watching what was happening to him and feeling unable to help or save him was the worst emotional pain I had ever experienced. And as irrational as it sounds to say out loud, I do still wonder if there was anything I could have done differently that would have saved his life.
Because of my experience as a caregiver, I am who I am today. Would I go back and change anything? Not really.
I’d do it all again because in-between the most desperate and painful times of our lives were moments of clarity and joy and true love. During those 11 months and 21 days, my dad and I grew closer than we had ever been. I got a front-row seat into the man he really was and will always be thankful for that. I may not have ever really known him otherwise.
Those 11 months and 21 days sparked a calling and a mission I never knew existed. I became a lung cancer patient advocate, started my own foundation in 2003, and eventually dedicated my life and career to LUNGevity Foundation.
I spend my days supporting others going through what we went through. I celebrate survivorship and let that fuel the work I’m doing. As each year passes, I see more and more people survive this disease.
The stigma and lack of support for those affected by lung cancer is still prevalent, but we are making strides, using our voices and stories to impact the public and raise awareness.
I’ll never forget how alone I felt then. Today, thanks to LUNGevity’s Lung Cancer Support Community, no one ever has to go through a lung cancer diagnosis alone. People can connect with other survivors and family members, share information and advice and get support and friendship.
I’ll never forget how afraid and incompetent I felt as a caregiver. Today, we are working hard on lung cancer caregiver resources, advocacy initiatives and training and expert education to arm people who are just starting their journey with lung cancer.
I believe all of that aids in a lung cancer patient’s survival. Knowledge is power and together we finally have a fighting chance.
While we support people during their lung cancer journey, we are also funding innovative lung cancer research. LUNGevity will fund about 2 million in life-saving research this year.
I miss my dad every single day.
His lung cancer diagnosis changed my life forever.
Afterwards, I had to ask myself, what am I going to do about it?
My mission became to work hard so no one else has to lose someone they love the way I did.
What about you?
What’s your mission?