Mesothelioma survivor throws party of hope, support

Flames leap into the air from the fire pit in Heather and Cameron Von St. James' back yard.

There's a crash, then many more throughout the evening as partygoers write their fears on china plates and smash them into the bonfire. Inside a modest Roseville house, more than 100 others share food and drink, support and laughter.

They've come to celebrate the ninth anniversary of the radical surgery Heather Von St. James underwent shortly after she was diagnosed in late 2005 with mesothelioma, a deadly form of lung cancer caused by asbestos exposure.

It's called LungLeavin' Day, a moniker Von St. James' husband and sister invented to help quell her fears. The surgery, on Feb. 2, 2006, took her left lung, the lining around her heart, half her diaphragm, her sixth rib and a few lymph nodes. Twelve weeks of chemo followed.

"I'm very, very blessed," Von St. James, 46, said Sunday, the day after the party. "Just to have all these people come together and celebrate with us blows my mind.

"It's grown by leaps and bounds, bigger than we ever thought it would be. It's not celebrating anything 'normal' — it's the loss of a lung. It's so random and so bizarre. That sort of sums up how I am, strange, twisted, but a really passionate person."

Von St. James, 46, is one of the rare few to have survived nine years after a mesothelioma diagnosis, said her surgeon, Dr. David Sugarbaker, who moved a year ago from Brigham & Women's Hospital in Boston, where Von St. James had her surgery, to the Lung Institute at Baylor College of Medicine in Houston.

The median life expectancy with mesothelioma is 12 to 24 months. The five-year survival rate has climbed from about 2 percent a decade ago to around 20 percent today, thanks to surgery and a dual drug chemotherapy, Sugarbaker said.

Sugarbaker said he has one patient who has survived 16 years, and between a half-dozen and a dozen who, like Von St. James, have made it between nine and 16 years.

About 3,000 people across the country receive a mesothelioma diagnosis each year. That number was expected to fall, since asbestos has been banned for years, but instead it's increasing, Sugarbaker said. The disease can have as much as a 20- to 35-year latency period; Von St. James believes her cancer was caused by childhood exposure to her father's asbestos-covered work clothes. He was a construction laborer while she was growing up, and many of the products he worked with contained asbestos.

For Von St. James, dying wasn't an option. She had a 3½-month-old baby girl when she received the news. What she thought was a stubborn chest cold was actually mesothelioma.

Her daughter, Lily Rose, now is a 9-year-old fourth-grader.

Von St. James has become the face and voice of hope for mesothelioma patients and their families. She volunteers for mesothelioma-related groups, writes for the Huffington Post and has a blog on the Mesothelioma Cancer Alliance website.

Through a raffle and sales of T-shirts, LungLeavin' Day 2015 raised more than $5,000 for the groups.

Kristen Olson and her twin sister, Kim Olson Sebesta, met Von St. James while their mother was battling mesothelioma. She survived two years before dying in 2009.

Von St. James "was kind of a breath of fresh air," Olson said. "You could ask her anything, even if it was weird and uncomfortable. We share in her struggle and we celebrate every moment."

Scott Barraclough of Little Canada was an old friend of Von St. James' dad, Rollie Rosedahl.

"So when Heather gets sick, we step in as family, 'cause that's what you do," he said. He credits, more than anything, Lily's birth with saving Von St. James' life, saying it "brought a newfound purpose or love of life."

Erik Hjelm, a childhood friend of Cameron Von St. James, lost his grandfather, a plumber, to mesothelioma in 1986.

Hjelm is a third-generation plumber. He knows there's asbestos in the boilers and water heaters he repairs as part of his job. He also knows safety precautions to mitigate the danger.

Mary Thome and Kathy Landucci, a kindergarten teacher and teacher's assistant, respectively, at Central Park Elementary in Roseville, met Von St. James when Lily started kindergarten.

Thome is a 6½-year survivor of breast cancer. Landucci's husband underwent bypass surgery two months ago. Both laughed uproariously as they threw their plates into the fire and cheered for others as they did the same.

What fears were they trying to banish?

"Mine was losing my husband," Landucci said.

"Mine is being left alone, if I'm the last one to go," Thome answered tearfully.

"She is fighting for so many people," Thome said of Von St. James. "She makes all these relationships with people who have mesothelioma and their families. Don't give up hope."

As the night wore on, the shards of dozens of plates filled the firepit. Von St. James couldn't have been happier.

What does the celebration mean now that nine years have passed?

"I was given my life back nine years ago," she said. "Someone takes something away from [the party] every year. Somebody is moved by it every year. Besides, we raise money for mesothelioma. That's icing on the cake.

"I made my husband promise that even if something happened to me, he would carry this on. Sharing the night with other mesothelioma patients has really brought it full circle for me," she said.

Pat Pheifer • 952-746-3284