What is Mesothelioma?

No doubt you’ve seen commercials about mesothelioma and know that it is usually caused by exposure to asbestos and that there a lots of law firms in the country eager to represent victims. Have you ever met someone with mesothelioma? I haven’t, but I was recently contacted by Cameron Von St. James, whose wife Heather was diagnosed with it seven years ago. He wanted to know if I would be interested in sharing their story on my Catching Health blog. At my request, he sent me additional information. When I started reading it, I quickly realized that they both write for a mesothelioma web site sponsored by a law firm, which raised a red flag for me. I told him so and decided that I needed to think carefully about how to proceed. My conclusion was Heather Von St. James’ story is compelling and should be shared, if for no other reason than because it’s an opportunity to be inspired by a young woman with a deep appreciation for life — her own and others.

Heather, Lily and Cameron Von St. James

In August 2005, Heather and Cameron became parents for the first time when she gave birth to their daughter Lily Rose. Over the next several weeks Heather lost weight, was always tired, and frequently had no energy. All things any new mother might experience. But the shortness of breath she began to notice along with a low grade fever and a heavy feeling in her chest were puzzling. One morning in November, she went to her basement laundry room and became so winded she had to stop and rest before heading back upstairs. Exhausted, she sat down on the couch, put her head back and fell sound asleep for two hours. She woke up startled, and knew in her heart that how she had been feeling was not normal, even with a new baby. She made an appointment to see her doctor. An x-ray showed fluid around her left lung. She had more tests.

From Heather: November 21st, 2005, 1:45 p.m.
“I found out why I was exhausted and weak. It was way more than the baby blues. I was told those three words, ‘You have cancer.’ Not only did I learn that I had cancer, but I was diagnosed with mesothelioma, a rare form of cancer caused by asbestos exposure. There I was 36 years old, a new mom barely adjusting to the changes of pregnancy, caring for a baby, and now a cancer victim.”

What is mesothelioma?
Mesothelioma is cancer of the tissue that lines the lungs, stomach, heart, and other organs. It usually starts in the lungs, but can also start in the other organs. It’s rare; only about 3,000 cases are diagnosed in this country every year.

According to the American Cancer Society, “The main risk factor for developing mesothelioma is exposure to asbestos. In fact, most cases of mesothelioma have been linked to asbestos exposure in the workplace.”

Also according to the Cancer Society:

  • The risk of mesothelioma increases with age. It is rare in people under age 45. About 2 out of 3 people with mesothelioma are older than 65.
  • The disease is much more common in men than in women. This is probably because men have been more likely to work in jobs with heavy exposure to asbestos.

So, how did 36-year old Heather Von St. James develop malignant pleural mesothelioma?

From Heather: 
“[My doctor] asked me point blank what it was my dad had done for work. He asked if he had worked in mining, construction, or plumbing. The answer was yes; he had worked construction for years while I was growing up. The doctor told me I had probably been exposed to asbestos as a kid, and after all these years, developed mesothelioma. This was my first lesson about asbestos. It would be the first of many.”

Treatment
After reviewing her treatment options, Heather and Cameron decided to see Dr. David Sugarbaker, a leading mesothelioma specialist at Brigham and Women’s Hospital in Boston. Dr. Sugarbaker recommended a relatively new surgical procedure called extrapleural pneumonectomy, which involves removing the affected lung along with the lining of the chest (pleura), portions of the covering of the heart (pericardium), and the diaphragm.

From Heather:
“Without the surgery, and with chemotherapy and radiation alone, my survival would be 5 years at the most. I could forgo treatment, do nothing and live maybe 15 months. But if I went to Boston, and was a candidate for the surgery, my survival could be as much as 10 year or more. Without missing a beat, my husband said, ‘Get us to Boston.’ I just sat there, my mind reeling. I was thinking of my new baby girl and my husband raising her without me, while knowing all along that was not an option.”

A temporary goodbye to baby Lily
On January 30, 2006, Heather and Cameron boarded a plane to Boston, while five-month-old Lily, secure in the arms of her grandmother, began the journey to Heather’s parents’ home in South Dakota.

From Heather:
“That was probably the most painful part of the whole thing, knowing I would miss my baby girl’s whole sixth month of life. Cams would miss much more than that. Our plane was boarding. We hugged one another again, walked to the door, and blew my mom and baby a kiss, each of us trying not to cry, not succeeding, but knowing this is what had to be done. Three hours later, as we were touching down in Boston, my mom and dad were settling into life as parents to Lily, and I was in for the fight of my life.”

The surgery
Heather’s surgery took eight hours. The morning after, she sat on the edge of the bed and dangled her legs. After 18 days in the hospital, she stayed with parents for two months and then returned home to Minnesota to undergo 12 weeks of chemotherapy. Little by little, she got stronger, and Heather’s “new normal” began to take shape.

From Heather:
“Everything you knew, every breath, every heartbeat, everyday you wake up—it’s the new, different normal. It’s a world colored by a cancer diagnosis. A world where what you used to know and take for granted was wiped away by those three words, ‘You have cancer.’ But the good news is that the new normal is not a bad place.”

Today
Seven years have passed since the lives Heather and Cameron Von St. James had known came to a screeching halt. Today, she is cancer free, and has proclaimed herself a “poster child for hope after mesothelioma.” She shares her personal story through social media, speaking engagements, and being a member of a small, but significant community of people who have also been affected by mesothelioma. Most recently, she and Cameron attended the 9th Annual International Asbestos Awareness Conference, organized by the Asbestos Disease Awareness Organization, where she spoke about Turning Anger to Action.

Von St. James family

From Heather:
“The thing about mesothelioma, or any cancer really, is you just don’t know what is going to happen. You say goodbye, send your new friends on their way, and pray like crazy you see them next year. Your heart is just filled with love and compassion for the people who are fighting this disease, and for their caregivers who were there in the absence of their loved ones. Your heart grows by leaps and bounds with every passing year, seeing people who are winning their own battle with illness, while the heart breaks into a million pieces when you hear that someone succumbs to the disease. Just when I don’t think I can take anymore, I attend an event and meet more incredible people. It restores my resolve to keep fighting, to keep bringing about awareness and to keep spreading hope.”

If you would like to know more about Heather’s story, you may connect with her on Facebook.

Diane Atwood

About Diane Atwood

For more than 20 years, Diane Atwood was the health reporter on News Center 6. She's now a regular guest on the Morning Report. Before she became a health reporter, Diane was a radiation therapist/dosimetrist at Maine Medical Center. In 2000, she left the world of reporting to manage marketing and public relations for Mercy Hospital. In 2011, she decided to pursue a longtime dream of being a freelance writer and launched her award-winning blog Catching Health with Diane Atwood.