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Janna can only describe her emotion as “shock” when her doctor told her she had mantle cell lymphoma (MCL) – a rare form of non-Hodgkin lymphoma.

“Women do not usually get this disease,” she says. “I didn’t fit the profile.” Even more shocking, Janna adds, was the news that her type of cancer was treatable but not curable with the usual therapies that were available. “My doctor told me that many people with MCL die within five years.” 

Despite the prognosis, Janna says she was determined to “stay as well as I could, for as long as I could.” It was a fight that statistics said she wasn’t supposed to win, and it was far from easy. But more than seven years later, she found herself standing – tumor free – on a mountain top celebrating “the day my life came back.”

That road began with her diagnosis in 2001. Janna had an initial round of chemotherapy that led to a remission of her cancer for 18 months. When her cancer came back, it was stronger than ever and became resistant to chemo and other traditional treatments. Her oncologist had done his fellowship at University of Minnesota and was in touch with doctors at the Blood and Marrow Transplant Program there about Janna’s case. He told her that there was a new treatment being piloted at University of Minnesota Medical Center, Fairview, that she may want to consider. It was a study of the effectiveness of double umbilical cord blood transplantation.

Would it work? Janna said her oncologist explained that not many patients with MCL survive long enough to have a transplant. “But he said that when it came to experience and expertise, the Blood and Marrow Transplant Program had done as many MCL transplants as anywhere else, and had an excellent reputation.” Janna decided to give it a try. Her tumor was growing rapidly and without further treatment, she knew she probably had only weeks or months left to live.

In September 2005, Janna became the first female MCL patient to receive a double cord transplant at University of Minnesota Medical Center. The transplant was successful, but the year that followed was a tough one. Janna recalls being exhausted, physically weak and at times very sick. She had severe graft-versus-host disease and other complications. But the added benefit, she knew, was that her tumors were being attacked, and the graft was strengthening.

The Road to Kilimanjaro

Janna found that focusing on positive distractions during the most “wretched” part of her post-transplant recovery helped her stay hopeful. I would tell myself, “I’m going to do as well as I can do today, and will turn some of the burden over to those are helping me.” Dr. Arne Slungaard, Kathy Hodges (her nurse coordinator) and the rest of the BMT staff “were an exceptional team and a great match for me,” says Janna. “They do everything they can for you, and expect that you will collaborate by doing everything you can as well.”

Among her distractions during treatment and recovery were listening to “great music” and fantasizing about climbing Mount Kilimanjaro in Tanzania. She achieved her dream in the fall of 2008, just as she was celebrating her third post-transplant “birthday.” With a group of other climbers, she made it to the mountain’s summit, Uhuru Peak, tumor free and facing life with a new perspective.

As Janna and her companions came back down the mountain side, she explained to their African guide the concept of her transplant birthday. “Oh,” her guide said, “You mean it was the day your life came back.”

And that’s how Janna likes to think of it too. “After something like my experience with lymphoma, you look at time and relationships differently.”

She knows there are no guarantees, she says, and time takes on a whole new perspective. Currently, she is volunteering with the Raptor Center and Second Harvest. And for one week in March, 2010, Janna did something else she’s never done before. She went dog sledding and skiing as part of an Outward Bound trip in the Boundry Waters Canoe Area of Minnesota. Undoubtedly just another of many adventures yet to come!