It’s not often that one has the opportunity to hear from a mesothelioma survivor, especially one as young and vibrant as Heather Von St. James.

As a self-described “Courageous Mother, Wife and Survivor of Mesothelioma,” Heather does not fit the typical picture of a mesothelioma survivor.

Mostly, we picture those with mesothelioma and asbestos cancer as older men and women who dealt with asbestos exposure in their place of work decades ago, and who were diagnosed much later as elderly patients.

A Mesothelioma Survivor’s Story

Heather states on the Mesothelioma Cancer Alliance blog, “My dad worked with asbestos and would come home covered in this fine, gray dust. His work coat was crusted with it. Most of the work my dad did was drywall sanding and cleanup. The joint compound my dad used contained asbestos. Almost 30 years later, I was diagnosed.”

Heather used to be part owner of a $3.5 million salon company. She made more than $80,000 a year doing what she loved, “Making people look and feel their best.” She took time away from her job to start a family, and had a daughter named Lily.

“After Lily was born, I felt awful. I knew that being a new mom would be exhausting but I was beyond tired. Then there was the fever, the weight loss, the night sweats, and finally the heaviness in my chest that suggested more was going on than meets the eye,” the mesothelioma survivor remembers.

Heather visited her doctors and had weeks of testing performed before receiving her diagnosis. “Malignant pleural mesothelioma. Never in a million years would I dream that I would be fighting for my life when my baby was just 3½ months old,” Heather states.

Having to figure out how to care for herself while caring for her new baby made for some difficult decisions. Heather ended up seeing a doctor in Massachusetts who was a specialist, even though she lived in Minnesota.

Heather was able to find some organizations to help her with travel costs, but the help barely made a dent in the overall expenses she was faced with. Heather adds, “We were very fortunate that we didn’t have much debt when I was diagnosed. We were faced with the very real possibility of losing our home, our vehicles – nothing was off limits. Somehow, we made it through.”

The amount of medical expenses for treatment and ongoing care have been immense. Heather recalls, “By the time I was 40 years old, I racked up close to a million dollars in medical bills and associated expenses. I had to quit my job and sell my portion of the business. My new full-time job was fighting cancer.”

Asbestos Exposure

Mesothelioma is almost exclusively caused by asbestos exposure. Asbestos is a mineral used for its insulation and fire-retardant properties in building materials, automotive parts and insulation, among others.

Asbestos has been banned in many countries but is still used in the U.S., though not as much as it once was.

“This, to me is terrifying,” Heather says. “As a victim of asbestos, and being involved with the mesothelioma community for the last 10 years, I have seen first hand the death and devastation wrought by this seemingly beneficial mineral. The World Health Organization estimates that over 100,000 people die each year from asbestos-related disease. What makes me so angry is that they are all preventable.”

While she has one of the most upbeat and optimistic attitudes around, Heather has lost so much more than financial stability. She has lost time with her child and husband, and continues to do so while undergoing medical follow-ups.

“Ten years later people assume everything is just great, but the expenses are still there. My surgeon moved from Boston to Houston, so I still have to travel every six months for follow-up appointments. I have to pay for airfare and lodging out of my own pocket.”

Heather says. “I will always have breathing issues, living with just one lung. I have fatigue related to treatment, and recently I was diagnosed with PTSD as a result of the cancer diagnosis and subsequent treatments. Through help from a good therapist, support from other meso patients, friends and family, I am better equipped to handle the anxiety and PTSD. So there is much more to the cost of a mesothelioma diagnosis than what is on paper.”

Like many mesothelioma survivor plaintiffs before her, Heather hired a lawyer and was able to settle her lawsuit. “Many people wrongly assumed that this makes everything okay. No amount of money can ever replace all I lost,” Heather states.

Heather has embraced her role as a mesothelioma survivor and has taken it upon herself to be an advocate for those dealing with asbestos cancer.

“Asbestos robbed me and thousands upon thousands of other innocent people of that life we dreamed of – and for what? Corporate greed. Money. No product should be used that has been known for decades that it kills people. There are other cost-effective substitutes on the market that don’t endanger the lives of people working with or around it.”

“There is no known safe level of exposure to asbestos, and as long as it is still legal and lethal in the US, I will continue my efforts to change the laws around using this deadly mineral, working toward a ban.”