September happens to be one of my favorite times of the year-- not only because the weather is usually picture perfect and the leaves start turning, but every year my mom and I go to New York City for Mesothelioma Awareness Day. This was our 3rd trip and each year we love it more and more. It’s becoming a tradition for my mom and I to arrive a day early, enjoy a nice dinner and get ready for the bright and early wake up time of 4:00 am to get to the plaza of the Today Show by 5:30. We get there so early to secure a good place around the barriers to be seen by the hosts. NYC at 5 in the morning is amazing, it’s actually quiet with the occasional roar of a truck engine in the distance. By the time we are allowed onto the plaza for the taping of the show, there is a line down the block of people wanting to get noticed. All of us who were there for Mesothelioma Awareness Day were dressed in our bright yellow “Cure Meso” t-shirts and grouped together so we would be noticed when the hosts of the show came around. Strength in numbers!
Heather Von St. James
Courageous Mother, Wife and Survivor of Mesothelioma
Dying to be Heard is a statement that perfectly illustrates what is happening to mesothelioma victims.
Each year, 3,000 new people are diagnosed with mesothelioma cancer. Of those 3,000 victims, only a small percentage will live to celebrate 5 years of survival. Most live a mere 10 months past diagnosis and, during those 10 arduous months, they are dying to have their voices heard—by asbestos companies, medical research organizations, potential victims, and those who don’t know about this disease. Mesothelioma is a completely preventable disease, yet asbestos is still not banned in the US.
My daughter Lily just celebrated her 8th birthday this month. Eight years old! At times I find it hard to believe she is already 8. Other times it seems like she should be older because she is so wise for her age. Of course we had a HUGE birthday party to celebrate, because I like to make a big deal about birthdays. I have since her first birthday, quite simply because I didn’t know if would be around to see her turn 1, let alone 8!
The thing about cancer that no one tells you is that you are thrust into a world not only of endless doctor appointments, countless labs, CT scans, being poked literally hundreds of times until you're bruised up and down your arms, but also into a world of some of the most amazing, resilient and inspiring people you will ever know. There is also the really, really hard part very few people talk about-- the fact that a lot of those amazing people don't make it. I’ve had to say good-bye to more people in the last 7 years than I ever imagined.
When I was in the hospital in Boston recovering from my extrapleural pneumonectomy surgery, I remember looking at Cameron, my husband, and saying to him, “when we get through all of this, we are getting a motorcycle.” I think he started dreaming about the perfect bike that night.
I was speaking with a friend of mine recently about writing, as she's writing a urban fantasy short story, and the subject of blood types came up. You see, I always remember my blood type, B Positive, because that’s how I always strive to be. Unfortunately, sometimes I fall short of my goal. Today is one of those times.
This is the third time I have attended ADAO’s Annual International Asbestos Awareness Conference. I still remember how I instantly felt like family when I attended my first conference in Atlanta, GA in April 2011. I found myself at home with others whose lives had been affected by mesothelioma and asbestos. It was wonderful sharing my experiences with others and hearing their stories as well.
Four years ago, Heather went to her first Mesothelioma Applied Research Foundation (Meso Foundation) symposium. That first symposium left a lasting impression and changed her life. The opportunity to meet with other mesothelioma warriors, their families, caregivers, and medical experts in mesothelioma treatment and research had a positive impact. It was the opportunity to meet with people who know what a mesothelioma diagnosis means. These new friends quickly became family.