01. My History
About Me
In November 2005, I was a happily married new mom with a thriving business. But three words changed that: “You have cancer.” My doctor diagnosed me with malignant pleural mesothelioma. Suddenly, I was a cancer patient.
Mesothelioma survivor Heather Von St. James shares her personal story of how secondhand exposure resulted in her mesothelioma diagnosis.
02. My Diagnosis
Getting a Mesothelioma Diagnosis
My mesothelioma diagnosis came shortly after I had my baby. I initially thought my symptoms were regular postpartum things. I lost weight, ran a persistent fever, and often felt breathless. But the symptoms didn’t go away. When I realized I kept feeling worse, I went to see my doctor. And that was just the start of it all.
My Early Symptoms
Read about my symptoms which led me to talk to my doctor.
My Emotional Journey
Learn how my emotional journey started with three words: “You have cancer.”
Testing Leading to My Diagnosis
Find out about the tests that confirmed my doctor’s fears.
Finding Out I Had Mesothelioma
Read how I learned I had mesothelioma and what I did next.
History of Asbestos Exposure
Asbestos exposure causes mesothelioma, but it can take many years to develop. For me, that meant I was a kid when I was exposed to asbestos from my dad’s coat – this is known as secondary exposure. He worked construction, sanding drywall and cleaning the dust off the floors. And that drywall dust had asbestos in it.
“When I was a girl, I wore my dad’s work coat all the time. It was covered in asbestos from his construction job.”
03. My Treatment
Getting Treatment for Mesothelioma
My doctor told me I wouldn’t live past 15 months without treatment. He said chemotherapy and radiation may get me 5 years. Then, he described an experimental procedure at Brigham and Women’s Hospital in Boston. If successful, this treatment could give me 10 years to live.
My husband Cam immediately said, “Get us to Boston.” Days later, I was on my way there to meet with Dr. David Sugarbaker, a leading expert in pleural mesothelioma. He developed a treatment plan for me that included surgery, chemotherapy and radiation. These treatments — and the man who prescribed them — saved my life.
My Treatment Story
Without treatment, I wouldn’t have lived past 15 months. And my treatment options were limited without any guarantees. Today, I’ve outlived my original prognosis and continue to raise awareness of this terrible disease.
Surgery
Read about my experience with extrapleural pneumonectomy.
Chemotherapy
Find out what chemotherapy was like for me.
Radiation
Learn what made radiation so tough for me.
04. Surviving Mesothelioma
My Mesothelioma Recovery
To say I had unrealistic expectations about healing would be a vast understatement. I had it in my mind that I would be out of the hospital in a week, home not long after that and back to work in 12 weeks. I couldn’t have been more wrong.
I was in the hospital for a month. Then, there were chemo and radiation treatments. After all that, scans showed no evidence of cancer, and the real recovery started.
Even though I was in remission, I had biannual visits with Dr. Sugarbaker. He needed to review my scans to see if the cancer had come back. Recovery became my full-time job.
Read About My Care After Treatment
My life after treatment wasn’t the end of visits to the doctor, tests or anxiety.
Read My Tribute to Dr. Sugarbaker
Sadly, Dr. Sugarbaker, the man who treated me, passed away. This is my tribute to him.
My Life as a Mesothelioma Survivor
Recovery was the beginning of life as a mesothelioma survivor. Everything in front of me felt uncertain. I didn’t have a job to go back to and had no idea what I would do. This was not the future I envisioned.
It took me a few months to start feeling good again. My beliefs and family helped me forge a new life despite many challenges. To this day, I still suffer from the side effects of my treatment. Some are physical; others are mental and emotional. Regardless, I beat the odds and became a mesothelioma survivor.
Read How Faith Helped Me
Faith helps many people through a cancer journey, including my family.
Read How I Managed My Mental Health
The doctors helped heal my body, but I still had to worry about my mental health.
Dealing With Survivor’s Guilt
Survivor’s guilt is a real thing. And, unfortunately, it can feel like a constant companion when you’re part of the mesothelioma community. Through my years of survivorship, I have met a lot of people, and I have said far too many goodbyes.
05. Finding Purpose
Finding My Purpose as a Mesothelioma Survivor
A few years ago, I decided it was time to start giving back to the mesothelioma community that had given me so much. I started writing and sharing my story with people. I felt empowered by the positive response, and before long, I found a new passion: Raising awareness.
Lung Leavin’ Day
On the anniversary of my surgery, we host Lung Leavin’ Day, a celebration of life and hope. It started out with just the two of us and a bonfire. But over the years, it’s grown into a huge party. Hundreds of people now join us virtually and at our home to give back to the mesothelioma community. Lung Leavin’ Day now raises money for mesothelioma research and patient assistance.
I started volunteering with awareness organizations and attending mesothelioma events. And Dr. Sugarbaker asked me to speak with people recently diagnosed with mesothelioma.
I still have a lot of work to do, and I don’t ever plan on giving up. If I help one person — if I was able to smooth the road even a little bit for them — then I’m doing what I’m meant to do. I’ve been given 18 years more than I was ever supposed to have. I’m not going to waste them.
