Karen Shayne and Judy Pearson: Working Together to Help Other Women Navigate Cancer Survivorship
Karen Shayne and Judy Pearson are very different people. Karen is in her mid-40s, a healthcare administrator from Nashville, Tennessee, with an outgoing personality, big hair, and boundless enthusiasm. Judy has just turned 60, a Michigan native who also lives in Chicago, and a writer of newspaper and magazine articles and books. Her favorite topic is the courage of ordinary people.
They lived in different worlds, many miles apart, but met because of one big thing they have in common: They are both cancer survivors. On their journeys, separate ones at first, they knew the fear and pain of dealing with cancer and the frustration that so often comes after, and they came together to make life better for others like them.
Karen was diagnosed with uterine cancer at the extraordinarily early age of 20. Already a college graduate and looking forward to starting a family, Karen fought the cancer for five years until her ovaries were involved and she had to have them removed, as well as undergoing a hysterectomy, followed by chemotherapy.
“All I thought about was, what is my life going to be like being childless?” she recalls. “As a newlywed, your heart just sinks, knowing that you brought a man into your life and you planned a life together, and now everything has changed.”
She also found it difficult to reconcile her role in the healthcare industry with her status as a cancer patient.
”So I went into this hole. I didn’t want to talk to people. I didn’t want to deal with this. I wanted my journey to be quiet. I didn’t even tell my mother until my hair started to fall out,” she remembers.
Her doctors and caregivers focused on helping her beat the cancer, but when it was gone, she felt she was on her own. Even when she attended healthcare conferences that dealt with cancer, she heard little about the post-cancer experience.
She dealt with shock, then depression, then anger, and then, “Oh my God, what do I do now”” she says. “But I finally realized that we are all in this together, and that is what brought me out of the depression, and got me on a new and exciting journey.”
Karen plunged into support and advocacy activities in the cancer community but felt the need for a greater focus on survivors, especially women. After talking it over with another survivor in 2009, she went home, pulled out a lipstick, and wrote on the mirror, “Survivors Convention.” The idea took shape over time and moved closer to reality when Karen got a call from a persistent journalist from Chicago.
Judy’s career as a writer had been suddenly interrupted in 2011 by a lump in her breast that a mammogram hadn’t detected a few months before. “I am the poster child for how dense breast tissue can make breast cancer screening difficult,” she says. A biopsy led to a diagnosis of triple-negative breast cancer, which was treated with a mastectomy and 18 rounds of chemotherapy.
“For me, the mastectomy was not frightening at all. But the chemo was terrifying,” Judy says. “I lost my hair. I was really, really sick. But we all go through those things. What shocked me the most was that no one told me about the survivorship issues. No one told me I would have joint pain, fatigue, “chemo brain,” night sweats three years later. That made me mad. I survived this horrible cancer, and I am still dragging this duffle bag of stuff behind me.”
A great source of strength was the man she married just before having her cancer diagnosed.
“As a newlywed, I felt badly for my husband. I told him, this isn’t what you signed up for. You don’t have to stay. We could get it annulled. I don’t know what I’m going to look like. I don’t know if I’m going to live. You should probably go,” she recalls.
“And he said to me, “This is exactly what I signed up for, and I’m not going anywhere.” And there he was, an incredible rock, and together we kept trying to make sense out of all this.”
Judy decided to write about her experience, and in 2012 her research led to Karen. The two became fast friends and sister survivors. Together they founded the Women Survivors Alliance, which held its first convention in 2013, with more than 800 in attendance from 49 states and five countries, and representing 27 forms of cancer.
The Women Survivors Alliance has three “ribbons” of support. The first is the convention, which is scheduled to be held in Nashville through 2015. Second, realizing the internet would give them the greatest reach, they launched a digital magazine called The Plum. A women’s magazine, it covers nutrition, exercise, finance, skin care, and more, all with a focus on survivors.
Last, they created a platform called “My 2nd Act,” giving women an opportunity to communicate how they’re using their survivorship to help others. Read the essays and learn about the stage shows at www.survivorssecondact.com.
“Life changes dramatically after a cancer diagnosis,” Judy says. “Survivorship is not a buzzword. It’s a reality. You can never go back to being the person you were before the diagnosis. What we try to inspire women to realize is that the “after” doesn’t have to be a horrible, end-of-life stage. It can be as bright and beautiful and giving, and sometimes more valuable, than what you had before.”