Regular readers of this site will no doubt remember the incredible story of Heather Von St. James that we shared not long ago. Heather was diagnosed with mesothelima just over three years ago, at the young age of 36, shortly after having a baby, daughter Lily Rose.

Stunned by the diagnosis and it’s bleak prognosis, Heather decided to undergo a radical surgery pioneered by Dr. David J. Sugarbaker at the International Mesothelioma Program at Brigham & Women’s Hospital in Boston, Mass. The procedure involved removing the tumor, pleura, part of her diaphragm, and her left lung.

The surgery was scheduled for Feb. 2, Groundhog Day, but Heather’s sister Danna promply dubbed the day “Lung Leavin’ Day.”

Heather’s surgery was a success, and she holds fast to the belief that she is cured. On the first anniversary of the surgery, she decided to have a party to celebrate life and hope. And the Lung Leavin’ Day annual celebration was born!

Heather, along with family and friends, commemorates the day with a huge bonfire. They write their fears on plates with a Sharpie marker and smash the plates into the fire in a symbolic releasing of those concerns.

The event has grown from a few close family members to include more than 40 people this year, on Saturday, Feb. 7, date of the Third Annual Lung Leavin’ Day.

Even if you can’t travel to Heather’s home in Minnesota to join the party, she encourages families battling meso and fellow survivors to use the day as an opportunity to celebrate life and to face the future with courage and optimism.

“I would love it if people all over celebrated with us,” she says. “They can do something as simple as raising a toast to health or dancing around a fire and plate breaking! Whatever you want to put in!”

The official celebration begins at 6 p.m. Central Time. I’m planning to definitely raise a glass and think of everyone I’ve met here through this web site, and all those I haven’t yet but who are struggling in their own fight against mesothelioma. There is so much hope, there are so many wonderful stories of success in this fight.

I know that together we can beat this cancer!

Lung Leavin’ Day! WOOT!

It has been three years since Heather Von St. James chose a radical surgical treatment following her mesothelioma diagnosis. Just 36 years old at the time of the diagnosis, Heather is an anomaly in many ways in the world of meso – she’s female, and she is very young. The average meso patient is older, usually around age 60 or older, and male.

Heather also is unusual in that she is a survivor. Mesothelioma is a deadly disease, very often killing its victims within two years of diagnosis. This is partly because meso can be hard to diagnose, and is often mistaken for pneumonia or other minor ailments, until it is caught late, at an advanced stage, too late to treat effectively. There is no known cure.

A persistent fever, fatigue, and a heaviness in her chest prompted Heather to visit the doctor two months after the birth of her daughter, Lily, in August 2005. She knew her symptoms were not related to the usual exhaustion of new motherhood. By Nov. 21 Heather was diagnosed with mesothelioma, and less than a month after her diagnosis Heather was in Boston at the International Mesothelioma Program (IMP). Two months later she completed surgery, an extrapleural pneumonectomy, to remove her tumor and her left lung.

She believes that God had a hand in the quick diagnosis and treatment, allowing her to battle her mesothelioma before it was able to advance.

“I am not the norm,” she acknowledges. “Too many people die from this disease – young, old, everything in between. But more people are surviving it now. We are out there. And I think that needs to be out there more.”

Heather understands that when she tells people she is cured – a diagnosis her doctor, Dr. David J. Sugarbaker, who pioneered the mesothelioma program at IMP, cannot officially confirm – it makes some people angry. But, she says, she has to make her own choices, and part of her recovery is believing that the meso is gone for good.

“Life is a death sentence, and we all get so caught up in the death part of it. [Having meso], it’s like you sort of know your chariot home. It was sort of an eye-opener for me,” she says. “But it also made me really want to stay. I have a baby daughter. I am not ready to stop being a Mom to her. I am not anywhere near ready to go. What got me through a lot of dark times was my relationship with the Lord, and my positive attitude.”

She is eager to share her story, as much to give hope to other mesothelioma patients as to raise awareness and support for a cure.

“There is the 80 percent that don’t make it, but there is the 20 percent that does. That statistic is there for a reason, because it’s true,” she says.

Heather regularly attends new patient orientation at IMP when she returns to Boston for her check-ups, looking for the opportunity to meet other mesothelioma patients and their families. She hopes she can answer their questions, help calm fears, and provide a sense of hope.

“I’m the face of ‘after.’ That’s still rare. I want to talk to patients, to give them hope.”

A full-time social worker and two chaplains work at IMP, and there are regular support groups each week for families and patients, both while they are at IMP for surgery, and when they return for follow-up visits. Heather also attends these meetings when she is in Boston.

Additionally, last October Heather was a special guest speaker at an annual symposium hosted by Dr. Sugarbaker for IMP supporters, physicians and researchers.

“Researchers never see the real people that all these cells they’re working on are attached to. Dr. Sugarbaker wanted to give a face to all these cells,” Heather said.

Heather and her family also hold their own annual celebration on Feb. 2, the date of her surgery, dubbed Lung Leavin’ Day by her sister, Danna.

On the first anniversary of her surgery, she and her husband Cameron built a huge bonfire. Cameron collected two plates and a Sharpie marker, and they wrote their fears on the plates, then smashed them into the fire. Danna and her husband, Wayne, had their own Lung Leavin’ Day celebration at their home in Portland at the same time, in solidarity.

Last year, on the second Lung Leavin’ Day, more than 40 friends and relatives gathered to celebrate Heather’s health.

“It’s a celebration of life,” she says. “That’s the day when my life started over. My cancer was gone.”

Heather is exploring volunteer and outreach opportunities in Minnesota, where mesothelioma is literally an epidemic, responsible for the deaths of nearly 60 taconite miners in its Iron Range, and affecting dozens more. In April, the Minnesota State Legislature approved nearly $5 million for a study of the Iron Range and mesothelioma.

In another tie to her home state, the current bill before the House of Representatives that would finally call for a complete ban of asbestos in the United States is named after late Minnesota Congressman Bruce Vento, who died of mesothelioma in 2000. The Bruce Vento Ban Asbestos and Prevent Mesothelioma Act of 2008 is currently before the House Committee on Energy and Commerce.

As a result of these two issues, people in Minnesota are perhaps more aware of mesothelioma than most other places in the U.S. Heather hopes to do what she can to continue to expand the message, with the hope of saving more lives through awareness, outreach and fund raising for a cure.

“I know I’m here for a reason,” she says. “[Other cancers] get so much attention and funding. Why can’t we have a 3-day walk for mesothelioma? It needs to be out there. We’re just going to see more and more of this disease.”

In the meantime, Heather concentrates on staying healthy for her daughter, Lily, whom she calls a “fourth generation flower.” Heather’s grandmother was Rose, and her mom is Violet. So she claims cured, and counts her miracles, and keeps the fear at bay while she builds that garden.

You can contact Heather Von St. James through email at red7ro7r@hotmail.com or call her at 651-330-3614. She welcomes calls from mesothelioma patients and families.

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

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

A Minnesota woman is “claiming cured” after battling mesothelioma. Diagnosed in November 2005, Heather Von St. James, now 39, underwent surgery under the care of Dr. David Sugarbaker, who heads the acclaimed International Mesothelioma Program at Brigham & Women’s Hospital in Boston. Now nearly two years later, all traces of her cancer are gone, according to a story today in the Minneapolis Star-Tribune.

Heather’s treatment included radical surgery to remove her left lung, the lining around her heart, half her diaphragm, her sixth rib, and a few lymph nodes, followed by a chemotherapy regimen every three weeks for 12 weeks.  She now calls herself the “poster child for hope after meso.”

According to the Star-Tribune article, Dr. Sugarbaker is more guarded, although optimistic. The paper quotes him as saying, “right now in this present moment she is disease-free.”

Dr. Sugarbaker is arguably the leading mesothelioma physician in the U.S., and is largely credited with developing the surgical technique for mesothelioma resection and for recognizing the importance of a multimodality approach to treatment that combines surgery with chemotherapy and radiation therapy.

The National Cancer Institute estimates about 2,000 cases of mesothelioma are diagnosed in the U.S. each year. The disease has a long latency period of between 20 and 50 years, and it is unusual to find it in someone so young. Mesothelioma is linked only to asbestos exposure, so its victims are traditionally people who work in asbestos mining or come into contact with asbestos through other occupational exposure.

In Heather’s case, her mesothelioma is most likely due to secondhand exposure, from asbestos on her father’s work clothes. The Star-Tribune reports that Heather’s dad, Rollie Rosedahl, was a construction laborer who often worked with asbestos-containing products. Heather says she often wore her father’s jacket and boots when he’d come in from work.

The National Cancer Institute says that asbestos related disease like mesothelioma and asbestosis can occur in people with only brief exposures, and that there is evidence that family members of workers exposed to asbestos face an increased risk of developing mesothelioma.

Charlene’s Fight

When Charlene Kaforey, 48, was diagnosed with pleural mesothelioma in July 2007, she immediately began seeking out information and treatment options.

The prognosis for mesothelioma is still bleak. There is no cure, and most studies estimate survival time between 4-12 months, depending on the stage of presentation. Charlene’s mesothelioma was diagnosed relatively early, so she was hopeful.

She visited mesothelioma specialist Dr. David J. Sugarbaker at Brigham & Women’s Hospital in Boston, Mass., Dr. Valerie W. Rusch at Memorial Sloan Kettering Cancer Center in New York, and Dr. Harvey Pass at the NYU Cancer Institute.

Immediately, doctors talked about extrapleural pneumonectomy, a surgery to remove the entire lung, entire diaphragm, and the lining of the chest cavity and the heart. Surgery would be followed by 6 weeks of radiation, and possibly chemotherapy. One doctor even talked about performing a heated chemotherapy wash of the chest cavity while on the operating table. At that time, they believed Charlene was a stage I, and such surgeries could give her a 40 percent chance of a 5 year survival. One doctor mentioned getting her as much as 10 years.

One of the doctors talked about limiting the surgery to a pleurectomy/decortication, a technique to remove the parietal pleura from the lung. The median survival after pleurectomy for malignant mesothelioma ranges from 6-21 months, and 9-40 percent of patients survive up to 2 years. However in later stages, the survival rates are almost identical between the two surgeries.

Research is still unclear as to whether extra-pleural pneumonectomy provides significantly greater benefits than pleurectomy, and if either is significantly more effective than non-surgical options.

Charlene didn’t have a lot of tumor bulk, so she was sent for a mediastinoscopy, a biopsy surgery that allows doctors to view the middle of the chest cavity and to remove lymph nodes from between the lungs to test them for cancer or infection. They found that Charlene did have lymph node involvement.

“I went from a Stage I to Stage III overnight,” she says. “It was shocking.”

Because of the lymph node involvement, doctors recommended she postpone considering pleurectomy or pneumonectomy and undergo chemotherapy. Survival rates from either surgery for a Stage III patient is much less, and only 25 percent survive 20 months, with less than 10 percent surviving 5 years. Both surgeries involve significant mortality rates and require 6-9 months recovery time.

“Looking at it now, I feel in some ways that having the lymph node involvement was a godsend for me,” Charlene says. “I mean, my condition was more serious, but because I was doing the chemotherapy, it gave me time to look for more information and to really think more about my options. Otherwise, I would have rushed into a very serious surgery with a long, difficult recovery and I’d probably be without a lung and diaphragm right now.”

Charlene offers one word of caution to meso patients.

“While you may feel time is of the essence, don’t rush into a procedure until you really understand what is involved, and what benefits you can expect to receive, what the risks and complications are, how long and difficult the recovery will be,”she said.

She talked to other meso patients and read everything she could get her hands on. Quality of remaining life is a big issue to consider.

“I realized that I might have only 18 to 30 months maximum to live, and that I would spend at least 9 months in a brutal recovery. I was feeling good with little to no symptoms. I couldn’t justify giving up my good health to surgery, knowing I may never feel good again, and might have only another 9 months of poor quality life after recovering from the surgery,” Charlene says.

Next: Charlene explores alternative medicine