Five years ago, after Jennifer Goodman Linn was diagnosed with sarcoma, she and her husband Dave founded Cycle for Survival, an indoor spinning event to raise money for rare cancers. Now, he's finishing what they started in her memory.
David Linn needed a place to live. But not just any place. He had his eye on one place in particular — an apartment that was occupied at the time by a fellow business school student named Jennifer Goodman.“Jen was a year ahead of me at Harvard,” Dave explains of the woman who eventually became his wife.
“There’s a long, funny story that my friends told at our rehearsal dinner, but the short version is that Jen had one of the best apartments on campus, and my roommate and I wanted it. Our first date was me trying to convince her that when she finished school that year and moved out, she should transfer her apartment to me.”
It must have been some date. Dave not only got the apartment; he got the woman who lived in it, too. “Jen always said that I didn’t read the fine print, which was that I was stuck with her,” he jokes, laughing. Then, affectionately: “It was a great deal.”
Life, Interrupted
Jen and Dave were married in September 2003. By the following fall, they had settled nicely into a life in New York and, like many newlywed couples, were thinking about expanding their family. But instead of getting pregnant, Jen, then 33, got sick.It started with a stomach cramp that just wouldn’t quit. Then fevers, night sweats, bloating. Doctors ran test after test to figure out what was wrong with her. And they did, finally.
“Did you know you have a tumor the size of a football in your abdomen?” they asked.
She didn’t, of course. That’s not the kind of thing you forget to mention to your physician.
In December, she underwent surgery to have the tumor removed. “We were hoping it was benign,” Dave says, “but unfortunately, that wasn’t the case.”
The official diagnosis was metastatic malignant fibrous histiocytoma (MFH), one of more than 50 subtypes of a rare cancer called sarcoma, which neither Jen nor Dave had ever heard of, and which affects only 12,000 people annually.
“Sarcoma is a cancer of connective tissue — muscle, fat, bone — the parts of the body that hold us together,” explains Gary Schwartz, MD, chief of the Melanoma and Sarcoma Service at Memorial Sloan-Kettering Cancer Center, where Jen was treated. “It’s an orphan cancer, meaning that if you count all patients alive with the disease, there are fewer than 200,000 cases a year.”
Not surprisingly, orphan cancers get less funding for research than more common cancers like those of the breast, lung, and colon. As a result, treatment options may be limited, especially in advanced cases like Jen’s.
Surgery can be curative in some lucky patients, Dr. Schwartz says, but the outcome depends on a lot of different factors — how big the tumor is, where it is, what kind it is, and so on. Jen’s cancer was too far along by the time doctors found it; she needed both surgery and chemotherapy, and even then, there was a good chance that she would never be completely well.
“The types of chemo we have have been shown to control cancer, but none are curative,” Schwartz explains. And once the body develops a resistance to a certain type, you have to move on to another. Ultimately, you’ll run out of options.
The deck was stacked. Jen was determined to fight, but it wasn’t going to be easy. Dave says he realized the seriousness of the situation early on, when Jen asked if they would be able to start a family while she was in treatment — to which the doctor replied, “I wouldn’t do that at this point unless Dave is prepared to be a single father.” The room fell silent.
Spinning for a Cure
Jen started her first rounds of chemo in August 2005. Over the next six years, she endured more than 20 others, plus five invasive surgeries to have additional tumors removed. And “99 percent of the time, she was smiling and living her life in a much fuller way than most of us who are completely healthy,” Dave says.In 2007, as she was recovering from treatment, Jen decided that she wanted to do something to give a little bit back to everyone who had taken such good care of her up to that point — in particular, the doctors and nurses at Memorial Sloan-Kettering, and the trainers and teachers at her local Equinox gym, where she was a regular in the spinning class.
“Jen always said that she credited Memorial Sloan-Kettering with her physical health and keeping her alive, and she credited the Equinox fitness club with her emotional well-being,” Dave explains, adding that she kept up with her workouts even during treatment. “Some days if she was feeling tired, she’d take it easy and not cycle as intensely, but other days, she’d be pedaling harder than anyone around her.”
Jen’s love of exercise gave the couple an idea: a relay-style spinning class to raise money for rare cancer research. They called it “Cycle for Survival.”
The Ride of a Lifetime
The first Cycle event took place in 2007. “It was very much a grassroots effort, mainly with friends and family,” Dave says. “We had 50 teams — about 230 cyclers total — and we did it just at our local Equinox gym.” The idea, he explains, was to get people to sign up to ride a bike and then collect pledges for their efforts.“Our goal was to raise $10,000,” he says, laughing. “We thought that was going to be hard.” It wasn’t. In fact, it was way too easy. They ended up with more than $250,000.
Inspired, the couple decided to expand the event in 2008. They held a morning session and an afternoon session, so they had roughly double the number of participants — and raised more than double the amount of money.
“At that point, as we were getting close to a million dollars, we realized we were onto something,” Dave recalls. “So we went to Memorial Sloan-Kettering and said, ‘Look at what we’ve done. There’s huge potential for this.’”
Hospital officials agreed, as did the executive team for Equinox, which signed on as the founding sponsor.
“That’s when we tried to broaden what we wanted to accomplish,” Dave says. “At the time, there were a number of great causes and events focused around breast cancer and the other most common types of cancer, but there wasn’t anything on a national scale that focused on so-called rare cancers like the kind that Jen had.” Cycle for Survival, they hoped, would fill that hole.
It did — and then some. Cycle now holds official events in New York, Long Island, Chicago, Washington D.C., San Francisco, and Los Angeles, as well as volunteer-created “satellite events” in 50 or 60 cities around the globe, including Hong Kong and London. To date, the events have raised more than $14 million, 100 percent of which has gone to Memorial Sloan-Kettering for research into new treatments for rare cancers.
“It’s been a huge success for our program here,” Dr. Schwartz says. “We have clinical trials that are the direct result of Cycle for Survival.”
Sadly, Jen will never get to benefit from those trials. Last July, after seven years of fighting, she lost her battle with sarcoma, leaving Dave to carry on the Cycle legacy without her — a responsibility he’s more than proud to shoulder.
“No matter what she was going through, Jen was always focused on helping out other patients,” he says. “Cycle is really a living memorial to her. I’m going to go to as many of the events as I can and pedal as fast as I can to keep going what she started.”
This year’s events, which are taking place over the next two weekends, are especially poignant for Dave and the other Cyclers, as they’re the first since Jen’s death. No doubt they’ll be emotional — but likely in a happy, hopeful way that honors Jen’s philosophy of fearless living.
“We interviewed a number of people and asked them to describe Jen and the impact she’d had on their lives,” Dave notes, “and one of the participants said, ‘I don’t need to say anything. All I need to do is show you a picture of Cycle for Survival. Seeing the emotion and the hope in that room captures the spirit that Jen had.’”
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