Faith by fire – Heather’s story, part I
25 Sep 2008 by Wendi Lewis under People
Heather Von St. James knew having a baby was a physically taxing experience, but the weeks of exhaustion, night sweats, and constant fever following the birth of her daughter, Lily Rose, in August 2005, just didn’t seem right. She was only 36; she ought to bounce back faster than this, she thought.
Within two weeks, the Roseville, Minn., resident visited nearby St. Paul for a checkup. Because of the fever, combined with a feeling of pressure in her chest that made breathing labored, doctors suspected a virus affecting Heather’s heart.
They ordered a chest x-ray, which showed fluid around the lung, so they sent her to the hospital for a thoracentesis to drain the fluid. During that procedure, they found a liter of fluid around her lung. Concerned, they sent Heather for a CT scan to find out where the fluid was coming from and what was causing it. The test revealed a tumor on the pleura. When they tested cells and fluid from around the lung, they were stunned by the diagnosis of mesothelioma.
Not quite believing this disease could affect such a young woman, they sent the samples to the Mayo Clinic for a second opinion. On Nov. 21, 2005, Heather got confirmation – she had mesothelioma. Even the Mayo Clinic physicians had only heard of one other woman Heather’s age with meso.
Mesothelioma has traditionally been seen in older men, usually with a background of working in a factory, shipyard, mine or other environment with heavy asbestos exposure. Today, however, more and more cases of secondary exposure are being diagnosed. Family members who receive only relatively minimal exposure through contact with clothing or other items dusted with asbestos are developing meso.
Heather’s dad worked around asbestos, as a fireman, and also in construction work, where he did remodeling and renovations. A self-proclaimed “Daddy’s Girl,” Heather figures she was exposed to asbestos in the dust on his clothing.
“That’s what ticks me off,” she says. “(Manufacturers) knew what [asbestos] did, (they) knew what it was. But they didn’t tell anyone.”
Heather, with her husband Cameron at her side, was given three choices for dealing with her diagnosis – do nothing, with an expectation of living about 15 months; pursue traditional chemotherapy and radiation treatments, with a life expectancy of about 5 years; or take a risk on a bold groundbreaking surgery at the International Mesothelioma Program (IMP) in Boston.
They decided to take the risk, and were in Boston by Dec. 12 to meet with Dr. David J. Sugarbaker, who has pioneered the treatment of mesothelioma at the Brigham & Women’s Hospital. The surgery, an extrapleural pneumonectomy, would involve the removal of Heather’s lung, pleura, pericardium and diaphragm.
At IMP, Heather and Cameron attended a new-patient orientation, and met two other families facing the diagnosis of mesothelioma. Both of the other patients were men, aged 72 and 80.
“It was really hard to be there. It was so surreal, having just had a baby four months earlier, and now I’m in Boston talking about going through this major, major surgery, talking to these men who worked around asbestos,” Heather says.
As part of the initial visit and evaluation, Heather underwent surgical biopsies on the tumor and on her esophagus, so that doctors could check for lymph node involvement.
Heather and Cameron returned home to spend a worried Christmas with their new baby while they waited for the results of the biopsies. The tests reconfirmed the mesothelioma diagnosis and revealed that the tumor was localized on the left part of her lung, on the pleura. Thankfully, the lymph nodes were clear.
Surgery was scheduled for Feb. 2 – Groundhog Day. Heather promptly nicknamed her tumor Punxsutawney Phil, after the famous weather-predicting groundhog, and joked with her surgeons that if her tumor saw its shadow would she have six more weeks of recovery? Her sister renamed the holiday Lung Leavin’ Day.
Shoring up her courage with humor, Heather set her mind on a positive outcome. She was not ready to leave this world.
Next: Part II – Surgery & Recovery
