Heather Von St. James
In 2005, at the age of 36, and only three months after giving birth to a beautiful daughter Lily Rose, Heather Von St. James was diagnosed with pleural mesothelioma. Upon learning of this life-altering diagnosis, Heather, together with her husband Cameron, embarked upon a search to find the best mesothelioma treatment care available. Their search eventually led them to Dr. David Sugarbaker, a renowned mesothelioma surgeon at the Boston based Brigham and Women’s hospital. Dr. Sugarbaker recommended a relatively new surgical procedure called extrapleural pneumonectomy, a groundbreaking treatment option offered through the International Mesothelioma Program. Although there were some risks associated with the procedure, it also carried promise for the best possible outcome. Heather, with full support from her husband and family, agreed to have the surgery.
Today, Heather Von St. James is a ten-year mesothelioma cancer survivor and continues to provide unending inspiration to mesothelioma victims around the globe. She carries out her mission to be a beacon of hope for those afflicted with mesothelioma by sharing her story of faith, love and courage both as a keynote speaker at conferences and through social media forums.
When Hope is in the equation…the odds don’t matter with Heather Von St James #isharehope Episode 104
Summary: Heather’s answer to the five questions! Listen to the full conversation on the player above; also available on iTunes, Stitcher and Soundcloud.
Question 1: How do you define hope or what is your favorite quote about hope?
Heather Von St James:
My favorite quote hope is “When hope is in the equation, the odds don’t matter” from my surgeon who got it from Superman, Christopher Reeve.
Question 2: Who has shared the most hope with you?
Heather Von St James:
My surgeon, Dr. Sugarbaker and all of the rest the mesothelioma patients and cancer survivors. They’re amazing. The lengths that people go through to fight this disease are just incredible – what the human body can go through and what the human mind can go through.
Question 3: How have you used hope to make it through a difficult time in your life?
Heather Von St James:
When I was first diagnosed, it was 10 years ago, I joked that it was the dark ages of mesothelioma. Not a lot was known. The surgery that I had was really intense. My entire left lung was removed. The left half of my diaphragm, the lining of my heart was also removed. During that surgery, they did a heated chemotherapy where they pump in a heated chemo onto the chest, wash it around and then pump it back out. I was in the hospital for 18 days. I had met two other patients while I was there, but they were also a lot older than I was. I at the time was the youngest mesothelioma patient that they knew of, but since then I had a lot younger ones. I felt very alone, hopeless because there was nobody around where I lived and meeting people who had the disease and living was really hard because there wasn’t any. Feeling alone during that time was probably the most hopeless that I have been.
During chemotherapy after I had finished my surgery, one of the guys that had surgery at the same time I did actually reached out to me because he had been going through chemotherapy and we became like chemo-buddies. He lived in Massachusetts at the time and I lived here in Minnesota and we would call each other weekly. That was the days of Facetime and iPads and iPhones and Facebook even. Just calling each other and keeping track of one another, that was helpful. It was that first year of being a new mom and knowing what the future held, it was really scary. That was probably the worst time that I had ever been through.
Question 4: How are you sharing hope today?
Heather Von St James:
I have a blog that’s read by many, many people and that’s how I started reaching out to other people – sharing my story. The story in itself is tragic and I have this 3-1/2 month-old baby and then I got this cancer, but it was more about how I overcame and the positive attitude that I’ve had through everything and reaching out to people who are newly diagnosed because I didn’t want anybody to go through what I went through. I didn’t want anybody to feel isolated and alone and hopeless. It started by reaching out to people at the doctor’s office and leaving my phone number there and saying hey, tell patients to call me and now it’s just a regular thing where they’d just give my name and my number out to people and tell them where my blog is.
I also belong to the Mesothelioma Applied Research Foundation, a nonprofit, and they have online support groups. I’m involved with those, I volunteer and do fundraising for them. There’s another nonprofit called The Asbestos Disease Awareness Organization. They deal mostly with asbestos laws, trying to change environmental laws.
Getting involved, making changes on groundbreaking level in the government and going to Washington and lobbying – that sort of thing is how I feel I can make any difference.
Question 5: How should I (the listener) begin to grow in hope or share hope today?
Heather Von St James:
(1) Find something positive.
(2) Find somebody who inspires you and follow their journey or get in touch with them. Get a mentor.
