“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along”.- Eleanor Roosevelt
Every so often I get that one email that truly touches my heart and moves me to action. It came about a month ago from a fellow Minnesota mom named Heather Von St. James. Heather is a 10-year survivor of a rare cancer called mesothelioma, who against all odds beat the disease, and is a prominent advocate for mesothelioma awareness and an outspoken proponent of banning asbestos. Her beautiful blog “Beating the Odds – My Decade of Mesothelioma Survivorship” and advocacy work for the Mesothelioma Cancer Alliance continues to spread awareness of the disease, give hope to those fighting the battle and seek justice to stop the use of asbestos in the United States. Here is a brief part of Heather’s story that drew me in.
“A diagnosis that would change my life” written by Heather Von St. James
I remember the waiting. From the cold patient waiting rooms, on hospital beds waiting for the CT machine and biopsy to start and especially the long, to angst filled days at home waiting for results. After all the testing, the poking, prodding and questions to try to figure out my breathlessness, sallow skin and all-consuming exhaustion…my husband, Cameron and I were left to wait for the answers.
These things happened to other people, not to me. That’s all I could think, how surreal all of this was. I had just given birth to my daughter, Lily, how could I be back in the hospital hearing the words CT scan, thoracentesis and “there’s a mass in your lower left lung.” After the years I spent working in a salon and farther back to when I had smoked, I was trying to block out the million thoughts racing through my mind, the heaviest and most terrifying of all – cancer.
Finally, on November 21, 2005, the answer came. It was malignant pleural mesothelioma. Cancer had overtaken the lining of my left lung. Cams and I sat in my doctor’s office too stunned to speak. When Dr. Flink asked me if a family member had worked around asbestos, the image of my father’s dusty work jacket I wore each day as a child to do my chores came flooding back to me.
It was his next words that rocked me back to life, “If you don’t do anything, you have about 15 months to live.” With chemo and radiation I could get up to five years. Five years. Maybe.
Here I was, with my beautiful baby girl Lily, who at just 3 and a half months old, might not have a mother by time she started kindergarten and a husband who might not have a wife. Lily needed me and more than anything I needed to be here for her, the thought that our time together would be so brief was too much to bear.
Just when the devastation took over, the doctor told us about an experimental procedure a specialist was performing at Brigham and Women’s Hospital with a best case prognosis that could mean 10 years to live. “Get us to Boston” was all Cam had to say and in that exact moment, I started my journey of survival.
This is a small piece of Heather’s beautifully written blog “Beating the Odds – My Decade of Mesothelioma Survivorship“. It is a powerful story and I highly recommend reading it.
What is mesothelioma?
Mesothelioma is a rare cancer that is caused by exposure to asbestos and is extremely aggressive; once diagnosed patients usually only live about 15 months. This cancer affects the linings of organs where the asbestos has either been inhaled or ingested, most commonly presenting as it did in Heather’s case in the lining of the lungs called pleural mesothelioma. However, mesothelioma can also affect the lining of the abdomen called peritoneal mesothelioma and around the heart called pericardial mesothelioma. There is no known cure for mesothelioma, but it’s commonly treated with surgery, chemotherapy, radiation and there are clinical trials available that have shown promising results.
On average about 3,000 people are diagnosed annually and there are about 2,500 mesothelioma deaths each year in the United States alone. Due to the long latency period between exposure to asbestos and developing this cancer, typically anywhere from 20-50 years, an estimated 20 million people in the US are at risk of developing mesothelioma. Awareness regarding asbestos and it’s dangers is vital, as preventing exposure is the only prevention to developing mesothelioma.
The US and Canada remain two of the few developed nations in the world where asbestos is still legal, it’s still currently used in specific applications in the US. The Environmental Protection Agency was recently granted authority to fully regulate chemicals and substances in the US and on November 29th they released information that asbestos will be among the first 10 substances evaluated for risk to human and environmental health.
To learn more about Heather’s fight and how you can help advocate, please see her website and story in full : “Beating the Odds: My Decade of Mesothelioma Survivorship”