Heather Von St. James
15 Years as a Mesothelioma Warrior
How I became a lighthouse for others
Celebrating 15 years as a mesothelioma survivor is not something I ever thought I would see. On February 2, it will be 15 years since my life-saving surgery of having my left lung removed due to mesothelioma.
I was just 35 years old when I was diagnosed. I was a new mom to a 3.5-month-old baby and sicker than I had ever been in my life.
When I was handed my diagnosis, the doctor gave me some pretty sobering news. Without treatment, I would not live to see my baby girl turn 2. My initial prognosis was that I had 15 months to live.
They then said chances would be better with chemo and radiation. But the most promising to beat the cancer was an incredibly invasive surgical procedure called an extrapleural pneumonectomy. Essentially, the removal of my entire affected lung, the pleura (where the cancer was growing), the lining of my heart and the left half of my diaphragm, both of which were replaced with surgical Gore-tex. Finally, they removed a rib to make the resection easier.
The only hiccup of this option was the best-qualified surgeon was across the country in Boston, and we were in Minneapolis/ St Paul. Without a second thought, my husband said “Get us to Boston!” Twelve days later, we were there, meeting with the late Dr. David Sugarbaker and his medical team to see if I was a candidate for the surgery.
The strange thing about this diagnosis was, The Mayo Clinic, where my pathology reports were sent, had only heard of one other person near my age being diagnosed. At the time, they assumed I was one of the youngest. Why is this so strange?
The main cause of mesothelioma is asbestos exposure. Mesothelioma has a latency period of anywhere from 10-50 years after exposure. That puts my exposure back when I was just a child. My doctor asked me if I had a parent who had ever worked around asbestos. Immediately my mind went back to when I was about 8 or 9 years old.
My dad had just started working construction and was the cleanup guy. He was the one who mixed the drywall compound, which contained asbestos at the time. He sanded the walls smooth after it dried and cleaned up the dust before the painting crews came in. My dad was one of the guys that did demolition in old apartments built in the 40s and 50s or took the asbestos-laden insulation off of boilers before they were told asbestos was deadly.
My dad would come home from work, covered in a greyish white dust. His work jacket had a constant dusty look. I would wear this jacket when I had chores to do outside, like raking the leaves or feeding my rabbits. It was warm, and I didn’t have to worry about getting my coat dirty. Chances are that I was now facing mesothelioma because my dad brought it home. Tragically, there are many cases like mine. Wives, mothers, siblings all getting ill because of secondhand exposure.
Many people think asbestos was banned. But a ban was overturned in 1991 and companies just used up the stock they had instead of getting rid of it.
Upon realization of what had caused my cancer, my dad was consumed with guilt. I did not hold him responsible for my illness in any way. I knew that the asbestos companies were at fault. They knew decades before that asbestos caused this cancer. I told my dad it was not his fault. He was just doing what any dad would do: going to work to provide for his family. He had no idea what danger the products he worked with held.
My dad was a deeply spiritual man and had a faith that was unshakable – most of the time – but this was hard on him. He sought out prayer and counseling with his pastor, a man I had known since I was about 12. He and my dad prayed together. His pastor opened his eyes, looked at my dad and said: “You don’t need to worry about Heather. She is going to be a lighthouse, a beacon of hope for people.” My dad broke and the tears fell. He took comfort in the words and called to share with me what was said. He still didn’t understand why it happened, but he took comfort in the words of hope.
Even before this was told to me, I felt as though I needed to share my story and help others. My surgeon took notice. Every time I went back to Boston for checkups, he had me talk to newly diagnosed patients. Word began to spread and I shared my story more and more, being featured in local news programs and nationally syndicated shows as well. I’ve been writing about my journey as a cancer patient and survivorship. I’ve been on Capitol Hill fighting for the rights of asbestos victims, fighting for more funding into research for rare cancer and a mesothelioma patient registry bill. I’ve spoken to hundreds of mesothelioma patients. I’m currently co-chair of The Community Advisory Board at The Mesothelioma Applied Research Foundation and a patient advocate through Mesothelioma.com.
I work one-on-one with patients and their loved ones to help them through some of the most difficult times they will ever face. I’ve lost countless friends I’ve made through the years to this disease, but that just strengthens my resolve to fighting harder. I made a promise to my dad, that I would be that lighthouse. I even got a half sleeve tattoo of a lighthouse on my arm to remind me of my purpose. In the bricks of the lighthouse, my dad’s initials are there to also remind me why. Sadly, my dad passed away from clear cell renal carcinoma in February of 2014. They assume his cancer was most likely caused by asbestos exposure too, but we will never know for certain.
Even though my dad is no longer with us, I still remain true to my purpose of being a lighthouse, and I can’t think of any better way than celebrating 15 years cancer free.