Two Leukemia Survivors Just Rode Across the U.S. for the Program That Saved Their Lives
In 2010, Annie Lipsitz, now 36, was faced with two serious pieces of news: She had leukemia, and doctors determined that a bone marrow transplant would be her best bet for a cure—but neither of her two sisters were a match.
Bone marrow transplants—when marrow from a healthy donor is placed into a sick person’s bloodstream so they can produce healthy blood cells in that person’s body—are important treatments for people suffering from blood cancers like leukemia or lymphoma. But in order for the treatment to work, the donor and the recipient must match in specific biological ways.
People often turn to families for a match, the chances of even family members being a match for a transplant is only about 30 percent, according to a study from Thomas Jefferson University.
That’s where the National Marrow Donor Program and the Be The Match Registry came in: Be the Match recruits marrow donors to add to the registry, provides grants to recipients going through treatment that insurance doesn’t cover, and raises money for research programs. Lipsitz’s doctors were able to find her match on the registry.
“He was the only 10 out of 10 perfect match for me,” Lipsitz said. “So if he had said no—which a lot of people say no, for a lot of different reasons—I would’ve had to have found a different route.”
He donated for the first time in 2010, and again after she relapsed in 2011.
Now healthy, Lipsitz and fellow leukemia survivor Bob Falkenberg, 63, who was diagnosed in 2009 and also received a transplant thanks to the Be the Match Registry, are looking to give back to the organization that has saved the lives of countless leukemia survivors like themselves: On July 30, they finished a 4,000 mile bike ride across the U.S. to raise awareness for bone marrow donation and funds for the organization.
Lipsitz and Falkenberg’s fundraising group, Team Lifeblood, has raised over $24,000 this year alone.
Lipsitz and Falkenberg connected over Facebook in 2015. Both were treated at the Windship Cancer Institute of Emory University in Atlanta, Georgia, by the same doctor, Amy Langston. They were also both recreational cyclists before their leukemia diagnoses.
Falkenberg did quite a bit of cycling in high school, then eased off in college when he moved to Pittsburgh. He picked it up again in 1995, when he moved to Atlanta, but didn’t do much riding the three years leading up to his diagnosis.
It was a promise he made with an old cycling buddy, the day of his transplant, that brought him back to the sport.
“I had a phone call from a friend of mine that I used to ride with a lot, when I was getting prepped from my transplant. We made a deal that if I survived, we’d go back and do the Savannah Century,” Falkenberg said. Ten months later, that’s exactly what he did.
“It’s probably the hardest thing I’ve ever done,” said Falkenberg. “I had very little training at that point.”
That ride led to others, like a fundraiser ride from Boston to Key West in 2011. There were some smaller rides throughout the years, then in 2017 his team rode from Vancouver to San Francisco.
As for Lipsitz? Before her diagnosis, she was primarily a bike commuter, with the occasional weekend ride thrown in. She bought her first adult bike (which she still has) when she was a 20-year-old sophomore in college, so she could ride around Washington, D.C.
After her treatment, a slow recovery relegated her to riding inside on a trainer. Growing tired of that, she put together a PowerPpoint presentation for her doctor, Langston, outlining all of the benefits of riding outside. She promised she’d stick to the same low-traffic trail until her blood counts recovered.
As her health improved, so did her riding. In 2015, Falkenberg convinced her to ride the Savannah Century. Langston, who’s also a cyclist, joined them.
“After my first century, somebody said to my mom, ‘I think if she can ride 100 miles in one day, she’s probably cured!’” Lipsitz said.
Now, several years later, Falkenberg and Lipsitz have completed their most epic ride to date at nearly 4,000 miles, over 120,000 feet of elevation gain (including three mountain passes), and an average pace of 76 miles a day.
They also made some important stops along the way: in Minneapolis at the Be The Match headquarters; in Chicago to see teammate Bob Houser’s sister, who has leukemia and received her marrow transplant days after their visit; and in Grand Rapids, to visit Falkenberg’s donor. When they reached Atlanta, they visited the Winship Cancer Institute at Emory University, where they met with patients who were awaiting marrow transplants.
Part of the mission of this trip, Falkenberg noted, was to also serve as a source of hope for other patients. “Once they get through this, there is life afterwards,” he said.
But finding a marrow donor isn’t always easy, and that’s another reason why Falkenberg, Lipsitz, and Team Lifeblood are riding—to raise awareness for the need for more donors.
“There are a lot of underrepresented groups still,” Falkenberg said. In fact, according to Be The Match, people of European descent have a 77 percent chance of finding a donor, while those of African descent only have a 23 percent chance.
They’re urging those who can safely donate to sign up as donors for the registry. It’s incredibly easy to do. You can sign up on the Be The Match website, where you’ll be sent a kit to take a cheek swab sample, which you then send back.
If you’re ever called upon to donate, the marrow donation process is also pretty simple, and not as painful as you might assume. The process nowadays is similar to that of donating plasma. Beforehand, the donor will get a shot that makes their body overproduce stem cells. Those stem cells get into the bloodstream and are then harvested, like plasma, with a needle in each arm as your blood pumps through a machine.
“It’s a long process. It takes about eight hours,” Falkenberg said. “But it’s generally a pain-free process. It’s probably a half day recovery period.”
And the result of you giving less than a day of your time? You could very well give someone their life back, 4,000 miles and all.
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