At 36 years old, Heather Von St. James was diagnosed with malignant pleural mesothelioma. This is a condensed version of her story. Read Heather’s full story here – Beating the Odds: My Decade of Survivorship. More than a decade since diagnosis, Heather’s mission is to help other victims of mesothelioma across the globe by sharing her story.
Three words changed Heather’s life forever.
“You have cancer,” her doctor said bluntly.
Stunned, Heather’s world crashed around her. How could this be? She was only 36 years old. Plus, she’d just had a baby girl, Lily, 3 months earlier. She knew she’d not felt up-to-par for several months, but cancer?
Cancer? She had cancer? Her head and her heart did not compute. Her husband, Cameron, reached for her hand.
“Cancer is named after where it originates in the body,” her doctor explained. “Breast cancer is still breast cancer, even if it’s found in the liver. Kidney cancer is still kidney cancer, even if it is found in the lungs.”
Heather’s head was reeling. Did she have breast cancer? Did she have kidney cancer?
“You have malignant pleural mesothelioma,” he continued. “If you do nothing, you have about 15 months to live.”
15 months? Heather sat still, in her chair, staring back at her doctor in shock. Her daughter wouldn’t even be 2 years old! 15 months? Her husband would be a widower after less than 7 years of marriage.
How It Began
Recovering from a C-section is never easy. But, Heather was exhausted more often than not. Easily breathless after climbing a short flight of stairs, she decided maybe this wasn’t normal the afternoon she passed out after doing laundry in her laundry room.
A smoker before getting pregnant with her daughter, she also worked with all kind of products in the hair salon she co-owned. She knew that new mothers had an adjustment period of getting back to “normal”, but she knew in her heart that what she was feeling and experiencing wasn’t “normal.”
Her primary care physician agreed with her – her symptoms weren’t “normal”, so he ordered a battery of tests. After X-rays, followed by a thoracentesis (a procedure that drains fluid found in lungs), a CT assisted needle biopsy confirmed a tumor. The pathologist wanted a second opinion. So, tissue was sent to the Mayo Clinic for review. Waiting for the results was torture for Heather and after another week, she got a call from her doctor to come into his office to discuss the results.
He confirmed a tumor, not one from smoking, but from mesothelioma.
The doctor told Heather that with standard cancer treatment (chemo and radiation), she might live up to 5 more years. But, he knew of an extremely experimental treatment, performed by a doctor in Boston, that might give her 10 years. Cameron and Heather decided it was a “no brainer” – they had to get to Boston.
Heather’s mother and father dropped everything and drove 600 miles from their home in South Dakota to be with Heather and her family in Minnesota. While the doctor’s staff coordinated the surgery team’s schedules, Heather’s family worked out the details of getting to Boston.
She worked with her salon partners to schedule clients with others. Her husband coordinated time off from his job to be with her. They asked neighbors to watch their home.
It was decided that Heather and Cameron’s baby daughter, Lily, would go back with Heather’s parents to their home in another state for the couple of weeks Heather would be recovering in the hospital from surgery. The day Heather put Lily on the plane with her parents, she didn’t know if she would ever see any of them again.
Heather and Cameron left for Boston…
When Hope is in the Equation, the Odds Don’t Matter
FREE Printable – When Hope is in the Equation
Dr. David Sugarbaker, a renowned mesothelioma surgeon at Brigham and Women’s Hospital in Boston, was Heather’s surgeon. In one of her pre-surgery appointments, Heather asked him the odds on the success of her upcoming surgery. Dr. Sugarbaker replied, “when hope is in the equation, the odds don’t matter.”
Dr. Sugerbaker gave her hope.
Surgery went as planned, but recovery was grueling. The surgeons removed her left lung, ribs and diaphragm. After days in ICU, Heather was transferred to the thoracic intensive care unit. Her kidneys were not working as well as hoped – during surgery, they had pumped Heather’s body with a heated chemotherapy drug and her kidneys were not up to the challenge of filtering the toxins as expected.
With kidney dialysis imminent, Heather asked that her family spread the word to pray for her. Cameron emailed everyone they knew and asked for their prayers. The next morning, Heather’s kidneys started working!
“I had a dream that a window opened near your bed and a bright beam of light streamed through the window,” Heather’s dad told her. “Scores of angels road that light down and surrounded your bed to heal you.” A miracle happened that night. The first of many. After 18 days in the the hospital, Heather was released.
FREE Printable – Scores of Angels
Exactly a month to the day, Heather flew home.
The Long Road Back
But, Heather didn’t fly home to Minnesota. She flew home to South Dakota to live with her parents and her baby, Lily. Too weak to care for Lily by herself, Heather needed constant help. Cameron had to stay in Minnesota to pay the bills. Separation was tough.
Finally, after almost 2 months of living with her parents, Heather was strong enough to go home. One week after returning home, she started chemotherapy. Every 3 weeks for 12 weeks, Heather had a chemo treatment. Chemo sessions lasted 5 to 6 hours and her mother-in-law accompanied her to every single one. Heather was always younger, by more than 20 years, than anyone else in the chemo room. She doesn’t remember much from those sessions because she had the unavoidable “chemo coma” that every cancer patient who has chemotherapy experiences.
Finally, she was done with chemo just in time for Lily’s first birthday! A major milestone for Heather (and Lily), this special party was a significant achievement given the rigors of recovery and the trials of chemo.
But, Heather’s treatment was not over. Chemo was followed by 30 sessions of IMRT radiation. Each session lasted 45 to 60 minutes and each time she had to lie in the same position. Every day she went to the cancer clinic for 6 solid weeks. Family and friends stepped in to help care for Lily.
Finally, more than a year since diagnosis and 100 pounds lighter, the last day of treatment came and went. Now the really hard battle started…
Re-finding and Redefining Life
Heather had no job. Her partnership collapsed during diagnosis, treatment and recovery. Even if it hadn’t happened, Heather’s sure she would not have returned to working in a salon full of chemicals.
With scars, burns and her left side permanently numb from radiation, Heather explains “there is no going back to the ‘normal’ you knew before with any cancer diagnosis, but for those with aggressive treatments and low prognoses, like mesothelioma, you need to completely re-find and redefine your life.”
Eventually, Heather found a new calling – as a speaker and advocate, supporting and fighting for the mesothelioma community.
What is Mesothelioma?
I asked this question of Heather, because while I knew in the back of my mind what is was, I wanted to know more. Heather shares her important message below:
“Mesothelioma is a rare cancer that is almost always caused by exposure to asbestos fibers. Once these microscopic fibers enter your body, they form tumors that can take anywhere from 10 to 50 years to develop into serious illnesses, like asbestosis, which is a lung disease and mesothelioma. With mesothelioma, tumors form in the linings of organs, most commonly in the lungs, as was my case, but it can also affect the heart and abdominal cavity.”
“Asbestos was used pretty widely in the past century in everything from clothing and home-wares, but is more commonly used in construction applications from drywall, tiling, popcorn ceilings, shingles, siding, etc. This means that it is still present in hundreds of thousands of buildings, from homes to schools. Undisturbed it poses little threat, but when it becomes broken, or ‘friable’, it becomes seriously dangerous. Today it can be found in imported items like pre-made constructions applications, car brake pads and most dangerously, it is even found to be in children’s toys as late as 2015.”
Asbestos is still legal in the United States. “Being a resource for those diagnosed and working to see asbestos finally banned in the U.S., where it remains legal and still used to this day, I work to raise awareness online for mesothelioma and in Washington D.C. to fight for asbestos to be seen as the unnecessary danger that it continues to be, threatening our lives and families,” Heather says.
Mesothelioma Resources Shared by Heather
Click here to read more about what mesothelioma is.
To learn more about the legal aspects of mesothelioma and asbestos exposure, click here.
How Did Heather Get Mesothelioma?
How did Heather, 36-years-old and not working in the construction industry, get mesothelioma?
“My father’s coat,” Heather reveals. Heather’s father worked with asbestos for a large construction company and project management firm and as a child, she would wear her father’s work coat covered in a white, crusty film from drywall dust. “My exposure most likely happened during childhood. I remember wearing my dad’s dusty coat to do chores because I didn’t want to get my own coat dirty…30 years later I’m fighting for my life.”
Please share Heather’s story with others.
Until Next Time,
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