The Cost of My Mesothelioma Diagnosis

 In Education, Family Story

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Guest blogger Heather Von St. James shares the story of her battle against mesothelioma – a rare and often misunderstood cancer – and the financial toll that it took on her family. Thank you for sharing your story, Heather. 

Cancer is an expensive diagnosis, no matter the type. But if you happen to see the lawyer commercials for mesothelioma, you might assume this disease could be a big payday. Being exposed to asbestos and having to fight so hard against this rare cancer is, by no means, a get rich quick scheme.

Asbestos has always been a moneymaker for companies. It’s cheap and has great fire resistant qualities. When disturbed, humans inhale the microscopic fibers that can stick to the lining of our respiratory system and our body isn’t able to break them down and rid ourselves of the toxin.

Asbestos exposure often happens on the job, but secondhand exposure poses a huge threat as well. My father worked in construction. The joint compound he used contained asbestos that slowly coated his jacket while he worked. I loved to wear dad’s crusty work jacket to play. About thirty years later, we realized the hidden dangers of his coat. I was diagnosed with malignant pleural mesothelioma at just 36. Three and a half months after I had our daughter, Lily. The prognosis for mesothelioma patients generally ranges from 12-24 months. My doctor said I had 15 months if we did nothing.

Before my diagnosis, I was part owner of a $3.5 million salon company. I loved my job. I always felt at home cutting hair and helping people look and feel their best. It felt like great timing for my husband, Cameron, and me to start a family. My career was established with great clientele, and I felt comfortable with the idea of a more flexible schedule. Everything in life seemed to be falling into place…except for my health. After Lily was born, I felt very sick. At first I thought, maybe this is what new moms feel like; after all, I had nothing to compare it to. I was exhausted constantly and losing weight. When I started to feel breathless, I knew there was a bigger problem than just being a worn out mother.

Cams and I had difficult decisions to make in regard to my treatment. Mesothelioma is a rare, aggressive cancer. Not many doctors specialize in mesothelioma, which meant a lot of traveling. My doctor told me about an experimental procedure at Brigham & Women’s Hospital in Boston, which isn’t exactly nearby our home in Minnesota. The thought of leaving Lily broke my heart, but thinking of her life without a mother really determined most of our decisions. It simply wasn’t an option.

We faced losing everything to afford regular bills on top of my treatments. We were fortunate to not have much debt before my diagnosis. I could no longer work in my salon; I had to quit and sell my portion of the company. Fighting for my life became a full time job over the next year. By the time I was 40 years old, I had racked up nearly one million dollars in medical expenses.

Heather and her daughter, Lily.

Heather and her daughter, Lily.

My lifesaving surgery to remove my lung cost $250,000.  Recovery from my surgery took longer than expected. I had to stay in the hospital for 18 days facing some complications. I needed another two weeks in Boston to recover before I could fly home. The hospital stay alone cost $380,000. But the surgery was just the first step of my treatment. Three months later, after recovering at my parents’ home in South Dakota so they could help take care of Lily, I was able to return to Minnesota for chemotherapy. Cams and I were apart almost that whole time, so he could continue working and paying our bills. We both missed a lot of time with Lily we can’t get back. You can’t put a price tag on that.

Our debt was staggering. I was so blessed to have family and friends who stepped in by holding fundraisers to help us with medical and living expenses. Without them, we might have lost everything. People might think because I hired a reputable lawyer and we were able to settle our suit that we’re now living the rich life and everything’s fine. But nothing can replace missing basically two years of Lily’s life, the mental strain we all felt from such a diagnosis, the loss of my lung…this diagnosis changed everything. Not to mention living with the knowledge that it could come back at any time. It is like a distant shadow lurking over my shoulder, just out of sight, but always there.

Asbestos robbed me and countless others of the lives we worked so hard for and deserved. I can’t work in my salon anymore, but I can work to help prevent this diagnosis happening to others. I write about my story to give hope to current patients, and help educate on the dangers of asbestos. I can’t change my diagnosis, but hopefully I can prevent others from going through what my family and I faced.