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.

SOURCE: myMeso › Faith by fire – Heather’s story, part 3