The Maine Public Broadcasting Network yesterday reported that the state has the highest rate of death resulting from mesothelioma per capita in the United States. MPBN quoted Ki Moon Bang, the senior epidemiologist at the National Institute for Occupational Safety and Health, as saying Maine’s death rate is 27.5 per million population as a result of asbestos, for a total 0f 173 deaths in the state. The NIOSH study examined mesothelioma mortality rates nationwide from 1999-2005.

Mesothelioma is caused by exposure to asbestos fibers, which when they are inhaled remain in the body. Asbestos exposure can also cause asbestosis, a severe scarring of the lungs, and lung cancer. Mesothelioma is a deadly cancer that affects the lining of the lungs and, less commonly, the stomach and/or the heart.

Bang said the high rate of mesothelioma death in Maine could come from any of three sources: asbestos used in homes or other buildings as insulation prior to the substance being largely (although not completely) banned in the late 1970s; naturally occurring asbestos deposits where Maine borders New Brunswick and Quebec; or exposure in the workplace.

According to the NIOSH study, some of Maine’s largest employers used asbestos, including paper companies, chemical companies, and the shipyard inudstry. Bang says a study recently released by the National Cancer Institute places people formerly employed by the shipyard at the most elevated risk from asbestos disease including mesothelioma.

There also is danger to those working in the construction industry, as many products still contain small amounts of asbestos, as it is not yet entirely banned in the United States.

According to the MPBN report, Bang says mesotheioma deaths in the United States is expected to peak in 2010, about 40 years after companies began limiting or avoiding the use of asbestos.

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After being diagnosed with mesothelioma Nov. 21, 2005 at the age of 36, Heather Von St. James chose an aggressive new surgical treatment developed by Dr. David J. Sugarbaker at the International Mesothelioma Program (IMP), based at Brigham & Women’s Hospital in Boston.

The surgery, an extrapleural pneumonectomy, would involve the removal of Heather’s lung, pleura, pericardium and diaphragm. She was accepted into the program and made her first visit for evaluation Dec. 12. Her surgery was scheduled for Feb. 2, 2006 – Groundhog Day, which would be forever after renamed among Heather’s family as “Lung Leavin’ Day.”

Returning home to Roseville, Minn., just before Christmas, Heather quit her job to spend as much time as possible with her 3-month-old daughter, Lily, and husband Cameron before the surgery. The little girl would stay with Heather’s parents in South Dakota for the month that would encompass a period of surgery and initial recovery.

“That was really hard,” Heather says. “I basically missed her whole sixth month of life. I was really glad I had taken the time off to just be ‘Mom’ before my surgery. But at least I knew she was in very capable, wonderful hands. That was a great load off my mind.”

She and Cameron returned to Boston in February.

The surgery took about seven hours, and included the removal of the tumor, pleura, part of her diaphragm, and her left lung. Dr. Sugarbaker also had to remove Heather’s sixth rib to access the area.

Once the tumor was removed, Dr. Sugarbaker pumped a heated chemotherapy solution into Heather’s chest cavity, which circulated for about an hour, she says. The solution came into contact with the areas where the tumor had touched, in an effort to destroy cancerous cells and prevent regrowth. This unique procedure, called intracavitary chemotherapy, is a recent innovation of the IMP.

According to IMP information, intracavitary chemotherapy allows chemotherapeutic agents like cisplatin to be administered at much higher doses than if administered systemically (through the bloodstream). To protect healthy cells, a “cytoprotective” agent is administered intravenously while the patient is in the operating room. This groundbreaking therapy has only recently completed Phase I of evaluation, with Phase II studies currently ongoing.

Following the surgery, Heather remained in the Intensive Care Unit (ICU) for three days, and then another “step down” unit after that for 15 more days before being released to a home near the medical center.

Immediately after the surgery, tests indicated Heather was experiencing some renal failure. She says that is one of the risks of this surgery, as a result of the intense and prolonged exposure to the chemotherapy and other medications used during the procedure. She asked her husband, Cameron, to begin a prayer chain to ask for the healing of her kidneys. If they deteriorated, she would have to deal with dialysis while recovering. By the morning, her kidneys were functioning normally.

“I believe in miracles,” she says. “I believe God had a hand in all of this – my fast diagnosis that allowed me to get treatment right away, finding Dr. Sugarbaker and this program, getting into Boston fast, good results of the surgery.”

She says her faith is hard for some people to understand in light of an illness as serious as mesothelioma.

“People give me a hard time. They say if I have faith, why do all this, why go through this surgery? Why not let God heal you?” she says. “But God doesn’t just put a finger in you and say, ‘tah-dahhh!’ He provided the doors for me to go through. That’s my view, that God opened all those doors for me. Then I’m pulling out all the stops, and doing what I have to do. I’m doing my part.”

Heather’s sister came out to Boston for two weeks to help take care of her while Cameron returned to Minnesota to work. On March 2, Heather was able to leave Boston, and spent two months in South Dakota with her parents and Lily.

“I couldn’t take care of Lily on my own, but I wanted to be with her, so bad,” Heather says.

Beginning in May 2006, Heather completed four sessions of chemotherapy and 30 sessions of radiation, which she said was extremely difficult. Now she travels to Boston every 4-6 months for a CT scan, and has regular blood work at an oncologist near her home in Minnesota. So far, there is no evidence of the tumor or any regrowth.

Heather calls herself cured, although she readily admits that Dr. Sugarbaker cannot confirm that.

“He can’t. He just can’t say he’s got a ‘cure’ for mesothelioma, not at this point,” she explains. “But it’s my coping mechanism. I can’t say I’m in remission because that suggests the possibility that it might come back. This is a mental way of keeping the fear at bay. It’s a daily battle, because the fear can totally overwhelm you. I can’t do that with a 3-year-old. I choose to believe I’m cured.”

Part 3: Keeping the Faith