Living with lung cancer one step at a time
In some ways, Ben Carlsen can breathe easy.
He and his girlfriend just completed the Twin Cities Marathon, and even better, their travel, lodging and entry fees were covered.
Yet few people would care to endure what he has to be honored in this way.
Carlsen, who lives in Carbondale and is Aspen city forester, was diagnosed with Stage IV lung cancer two years ago at the age of 36.
It was not what a young, fit, nonsmoker would expect. But Carlsen has ALK mutation, which he subsequently researched. He said with perhaps a touch of humor, “Twenty-six-year-old Asian women are the typical demographic for this mutation.” ALK mutation is nonhereditary and is present in 3 to 5 percent of people with non-small cell lung cancer, according to verywell.com.
Carlsen got into running while attending the University of Colorado. “When I was in college I started running for fun. I did a lot of trail running,” he said.
Sunday’s Twin Cities was his fifth marathon. He admits that he probably prefers the half marathon distance, but “I love being able to go out and run three or four hours,” he said.
His cancer diagnosis changed his focus from how many hours he had to run to how many months he had to live. Though he said that he wasn’t given a number of years or months to live, his research revealed an average survival time of nine months for lung cancer.
But that was for all lung cancers. His case is a bit unusual considering his age, fitness and the cause. It was also to his advantage to have had a rapid diagnosis.
In a guest opinion in the Post Independent two years ago, Carlsen said, “Soon we will have the medical knowledge to manage [lung cancer] so people can live with it, just like people can live with diabetes.” Carlsen is fortunate enough not to have to wait for that scenario. “I’m a healthy young person who will have lung cancer for the rest of my life,” he said.
The road to Minneapolis started in Glenwood Springs. “My pulmonologist in Glenwood [Dr. Akrum Al-Zubaidi] got me in touch with Medtronic Lung Solutions,” he said.
Medtronic, a biomedical engineering company, had what at the time was a new machine. “It was a piece of equipment that can look at the cancer, and take out a piece of the cancer so it can be diagnosed. Two or three years ago it was a very new technology,” he said.
In the guest opinion, Carlsen explained that electromagnetic navigation bronchoscopy is “a GPS-like technology to locate, test and detect a lesion in the lung, while confocal endomicroscopy enables the pulmonologist to see individual cells in the farthest reaches of the lung.”
The resulting diagnosis allowed Carlsen to get treatment sooner, which he said is “a big deal psychologically and physically.” He said that the new technology cut the time of diagnosis from six months to eight days, which can literally be the difference between life and death. He did not have to undergo chemotherapy or radiation but, “I’m on a targeted therapy drug that acts on a specific genetic mutation to decrease cancer’s ability to proliferate,” he said.
After his treatment, “Some of the folks with Lung Solutions contacted me,” he said. They thought he’d be a good fit for the 2016 Global Heroes, a program that, according to its website, “celebrates the passion and accomplishments of runners who benefit from medical technology.”
“They want to honor people who have used their equipment to improve their lives,” he said.
In exchange, “What they expect from me is to share my story with some of the people around their offices and the employees there,” he said. Nothing like seeing the positive results of your work to inspire you to continue.
Carlsen’s goal was to run between 3:50 and 4 hours at what is officially called the Medtronic Twin Cities Marathon, and he accomplished that with a 3:53:38 finish. He once ran a 3:27 at the Portland Marathon, but he’s slower now. “Sometimes the medication can cause inflammation of the lungs, so I have to start out a bit slower,” he said.
But Medtronic is not claiming that their heroes are better or even as fast as before. The point is they’re able to run. “It makes me feel so much better when I run. I feel so lucky when I can do it,” he said.
And that’s worth much more than a personal best time.
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Roaring Fork Schools volunteers who have already completed a comparable background check through an approved entity would be good to go.