August 5, 2012
The stigma surrounding lung cancer bothers Diane Legg.
"Most often the first question asked is, 'Did you smoke?'" she said. "No other disease, nobody asks such an in-your-face question. Most people who have a heart attack, they don't ask if they smoked.
"It's not an important question. The answer is, 'It does not matter.' Everybody deserves compassion, and funding to eradicate a disease."
Legg, 50, of Amesbury, Mass., has had lung cancer for eight years. She rode in her first Pan-Mass Challenge Saturday — biking 83 miles from Wellesley, Mass., to Bourne. By late Sunday morning, her brother-in-law Chris Vossler of West Hartford will have ridden almost 300 miles in three days with Legg's husband, Dave, from Great Barrington, Mass. to Provincetown. as part of the PMC, in its 33rd year.
The PMC, which draws over 5,000 cyclists annually, is a popular fundraiser for the Jimmy Fund. Last year, it generated over 60 percent of the Jimmy Fund's revenue. Vossler had to raise $4,200 to participate in the official Sturbridge-to-Provincetown ride Saturday and Sunday.
He and Dave and a group of about 40 other cyclists also rode Friday, a 100-mile trek from the Berkshires to Sturbridge. They call it "Day Zero" of the PMC.
"I was always very interested in doing this but there just wasn't enough of a push, really, until Diane was diagnosed," said Vossler, a former bike racer. She was able to convince Dave to do it four years ago.
"The experience is very hard to describe. The physical part of it is challenging but in a way it's kind of fun. The most amazing and moving part of it is that everybody you ride with has a story. A lot of people have photographs pinned on the backs, pictures of people they love.
"You spend a lot of time on the bike with these people. It's a very powerful, emotional experience. When you get to Provincetown, the emotions, for me, getting to ride across the finish line with Dave, knowing what Dave must be going through every day of his life, thinking about his kids. …"
Dave and Diane have three sons between the ages of 8 and 15. Diane was diagnosed when their youngest was not even a year old. She went to pick him up one day and thought she had pulled a muscle in her back.
A family friend, a young healthy woman, had been diagnosed with lung cancer earlier that year. "They thought they saw this nodule on my lung," Diane said. "I was thinking in the back of my mind, 'If it happened to Sue, could it happen to me?'
"I had a biopsy, they called us and told us the news I never expected to hear. That kind of began our whole journey, learning about the disease."
Diane is asymptomatic, which means despite having late-stage cancer in both of her lungs and having lost half of her left lung to surgery, she can still function at a fairly high level, although her cancer has continued to grow. She's run four half-marathons since her diagnosis, her first in 2008 in Florida.
"Running became therapy and exercise became a huge component for my own healing peace," she said. "When I feel strong, I don't feel sick.
"You would have no idea I have late stage lung cancer. It is unusual. I do get winded. My lung capacity isn't what it used to be. Hills are very challenging to me when I'm bike-riding. I just push through it. Every day is a gift.
"I have been given the gift of time. I'm very appreciative. I have taken my time to become a voice for people who don't have a voice any longer."
Legg, who is the co-chair of the New England chapter of the Lung Cancer Alliance and the founder of the nonprofit LUNGStrong Inc., rattles off the stats: The mortality rate due to lung cancer is 84 percent, she said, and it has not changed in 40 years. According to the American Lung Association, lung cancer is the second-most commonly diagnosed cancer in both men and women and is the most common cause of cancer death.
She is trying to change that. She has been to Boston, to Washington, D.C., to try to get the Lung Cancer Mortality Reduction Act passed, calling for the government to put together a plan to reduce lung cancer deaths by 50 percent by 2020. She feels fundraising and awareness have been slowed because of the stigma attached to lung cancer.
I talked to Legg Friday. She was looking forward to her ride. She was hoping to raise $250,000 for Team LUNGstrong, which will go toward lung cancer research at the Dana Farber Cancer Institute. They already have raised over $130,000.
And I asked her again, the same question I had asked her before that she didn't answer, the in-your-face question, the one that nobody asks people who have had heart attacks:
Did she smoke?
"I smoked casually when I was young," she said. "The type of lung cancer I have is non-smoking. Twenty percent [of people diagnosed with lung cancer] are not smokers. Sixty percent are people who have had a smoking history and they have done the right thing and quit smoking. Yet this stigma is still attached to it, and unjustly.
"But the fact that we had to go back to that question, that has to change."
She's right. It doesn't matter.
"No one deserves to die," she said.
For more information about the PMC, go to http://www.pmc.org or to donate to Team LUNGStrong, go to http://www.pmc.org/profile/TL0096/.
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