Posts about "Dr. David Sugarbaker"
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.
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.
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.
Scanxiety: Noun [skan-zi-etee]: Uneasiness waiting for ones scans after cancer treatment. ie: I get Scanxiety the week or so before I go to Boston for my check ups.
Being a parent, my biggest fear is my child getting sick. I think that is a constant fear, regardless of how old your child is. So when I was diagnosed with mesothelioma, my parents had to face that fear. I was their child, their baby, and now I was fighting for my life. Then, with me being a new mom, they had to take over my role as a parent while I was in Boston for my surgery. They were much more than Grandma and Grandpa—they were, in every sense of the word, parents to her in our absence.
Community—a sense of community and renewed hope. That is what the overwhelming feeling was at the Mesothelioma Applied Research Foundation's (MARF) annual symposium on malignant mesothelioma. The symposium took place from Wednesday July 11th to Friday July 13th in Washington DC—no where else can you have, all in one room, world-renowned doctors, other medical staff, lawyers, patients, their loved ones and caregivers, as well as those who have lost members of their family to the disease. Everyone came together for a single cause, to help find a cure for mesothelioma. What a very powerful testament to what the MARF is about.
Resources for Mesothelioma Patients and their Families
Dr. David Sugarbaker and I.
On April 24th, I had my bi-annual check up in Boston with Dr. David Sugarbaker. It’s been 6 1/2 years since my diagnosis. It has been 6 years and 3 months since my subsequent surgery to have the tumor and my lung taken out—wow! I get giddy when I think about it. The few weeks before my appointments I usually suffer from what I call “Scanxiety,” or this anxiousness that comes before the scans to see if “it” came back.
I spent the evening making phone calls to family, and friends. My parents live over 600 miles away, and upon hearing the news, made plans to be out here the next day. It’s at least a 10-hour drive, but they needed to be here. I needed them to be here. No matter how old you are, it seems like you always want your mom and dad when you are sick. It was a comfort to know they would be here.