Mesothelioma Awareness Day, established by Mesothelioma Applied Research Foundation volunteers in 2004, has been the driving force behind the movement to bring more attention and funding to mesothelioma.
Heather Von St. James
Courageous Mother, Wife and Survivor of Mesothelioma
Today is a day I was never meant to live, this year was one I wasn’t supposed to see, this life is one I wasn’t supposed to have.
No one ever prepares you to fight for your life. When your reality becomes just that, learning that your existence is not guaranteed, your world becomes something you could have never imagined. I always wanted to be a mother, and after marrying the most amazing man, I was ready to be a parent. We would be a new family. I would become a mother, and find a new kind of unconditional love. After giving birth to our daughter, I was overjoyed. That joy suddenly faded after losing weight and strength in my body, feeling that I could not physically breathe. I was concerned, but attributed the weight loss to my recent pregnancy. Finally feeling that something more was actually to blame, I saw a doctor, and was told I had mesothelioma, a rare cancer caused by exposure to asbestos. I was given 15 months to live. That was 10 years ago. Throughout the last ten years I have devoted my life to spreading awareness of the dangers of asbestos, sharing hope, and supporting others on their path towards a cancer-free life.
Every year following Lung Leavin’ Day, I write a recap of the evening. This year I wanted to do something a little different. I know the event has a huge effect on people, and in the last couple of years people have shared their feelings about the night with me. I thought I would ask a few friends about their thoughts on the tradition and share them with you.
As a society, we put a huge emphasis on our children’s “firsts”: baby’s first tooth, baby’s first steps. The first birthday, the first day of school. Oh my, how I remember that day with Lily! So many of her firsts were milestones simply for the fact that I was not supposed to be alive to see them. I treasured each of those firsts, and marked the occasions with pictures and videos. I even still have her first tooth somewhere.
When I was diagnosed with mesothelioma, I felt more isolated than I ever had in my life.. I was a mere 36 years young and told I had an incredibly rare cancer that, in most cases, was diagnosed in much older men. I felt utterly alone and defeated.
I always credit Linda Reinstein from the Asbestos Disease Awareness Organization (ADAO) with giving me my voice. Four years ago, it was Linda who started me on this crazy journey of speaking and sharing my story with others when she approached me to speak at her conference.
Every year, 3000 people are diagnosed with mesothelioma.
In 2005, I was one of them.
I had never worked with asbestos, but my father did, and secondhand exposure as a child was enough to make me sick decades later. I was lucky, able to make a miraculous recovery through surgery. But I experienced for myself the fear, pain and suffering this disease can cause, and I believe I’ve found my calling fighting for victims of mesothelioma and other asbestos diseases.
Eight years. I still find it hard to believe sometimes.
That first year—the one-year mark of Lung Leavin’ Day—it was just Cams and me, outside by a little bonfire on a freezing cold night, writing our fears on a plate. Mine had everything to do with cancer, since surgery was so fresh in my mind. I didn’t read his plate; they’re his fears to smash, not mine. When we were finished writing we both took a breath and shattered our plates in the flames. With that, a tradition was born.