The moment of realization for Barbara Unell came in 1999 as she sat surrounded by books, searching for clues on how take care of herself now that her breast cancer treatment was over. Unell, who had been diagnosed a year before, was coming up empty.
“My first question was, ‘Now what?’ ” said Unell, 60, of Leawood. She had been told simply to return in three months for more scans and follow-up. “I wanted to know, what do I eat tonight?”
And that’s when it hit her. “Nobody had medical programs to help people recover and build their lives after breast cancer.”
No one had tips to help her through the pain, anxiety and swellings that are a natural byproduct of the chemotherapy and radiation she had been through.
After talking to friends, Unell decided, “We need to fill this big void in the health care system.”
What followed has been a decade-long effort to get hospitals and clinics into a network of post-cancer care that has grown into what’s known as the survivorship movement. Along the way and through her efforts, the University of Kansas created the Breast Cancer Survivorship Center in Westwood. And Unell and her husband, Bob, founded Back in the Swing, an organization dedicated to raising money for research and the care of breast cancer survivors.
This year, Back in the Swing celebrates its success with several big events, including a Sheryl Crow performance on Saturday, to launch Unell’s latest fundraising effort: “The Back in the Swing Cookbook: Recipes for Eating and Living Well Every Day After Breast Cancer.”
Although it’s billed as a cookbook, a good share of its 288 pages offer tidbits on positive attitude, lifestyle, healthy foods and personal stories from cancer survivors.
Unell collected or wrote the lifestyle advice and food facts. The recipes themselves were created by Judith Fertig, an Overland Park author of several Midwestern-themed cookbooks. Part of the proceeds will go to Back in the Swing.
The idea, Unell said, is to give people a new and more hopeful and empowering way to look at their cancer experience, she said. Instead of giving people more things to fear, Unell hopes the book will give easily accessible science-backed information on how to live a healthy and joyful life. “We want to make that focus on wellness versus illness.”
In a way, the book is a culmination of all those years since Unell’s diagnosis in 1998.
Unell, a journalist and co-author with psychologist Jerry Wyckoff of several books on parenting, already had a foothold in the world of psychology and health. But she was frustrated by the lack of information and coordination among hospitals on after-cancer care.
Because the treatments for cancer can be toxic, they cause side effects that must be dealt with later, she said. Such effects include fatigue, swelling of the arms, weight gain, numbness in the hands and feet, anxiety, depression, weakened bones, and heart and sexual issues, Unell said. “Those are not small in terms of quality of life,” she said.
At the time, though, hospitals and clinics in the area did not talk much with each other about a network of after care, she said. Her first accomplishment was to get five area hospitals and two psychosocial agencies together in 2000 to talk about how post-treatment care could be better.
One result of that is the KU Breast Cancer Survivorship Center. Back in the Swing is the largest cash donor to the center, which has become a model for other survivorship programs throughout the country.
The group’s support allows the center to research the best way to provide care to patients who have undergone cancer treatment, said Jennifer Klemp, director of cancer survivorship at the center. The cookbook is unique because it offers well-researched lifestyle changes along with the recipes, she said, and that can prevent recurrence.
One popular Back in the Swing fundraiser, called “Retail Therapy,” began with one shopping center and 42 stores participating in 2003. It became a yearly event, growing steadily in fundraising each year. Last year 200 retailers held events promoting the cookbook in anticipation of its publication this year, and Bob Unell said he expects as many will do the same this year.
This year promises to be the biggest yet. Although the cookbook’s release date is Aug. 7, it will be available at the Sheryl Crow appearance Saturday at the Carlsen Center at Johnson County Community College. Crow, a Missouri native and breast cancer survivor, will share her experience as well as sing.
In October, nationally known nutritionist Rachel Beller, who wrote the forward for the cookbook and serves on Back in the Swing’s board of directors, will give the keynote address at Speaking of Women’s Health at the Overland Park Convention Center. And also in October, Retail Therapy will focus on the cookbook in its fundraising.
Unell hopes the book will be one more aid in helping cancer survivors get rid of the fear and feel more power over their lives.
“If every three minutes someone in this country is diagnosed with breast cancer, that means every three minutes someone is going to have to recover,” she said. “Everyone is affected by the experience.”