When Kim Cesarek was diagnosed with Stage 4 breast cancer four years ago, she was alone in many ways. She didn’t know anyone else with breast cancer, much less Stage 4, much less with a young family.
“We spent the first two years trying to navigate that,” said Cesarek, of Burnsville. “You feel like you get this death sentence, and then you end up living a little longer.
“It’s weird. I thought, ‘Gosh, what if I would have had known someone like me?’ I would have gotten to my comfort place a little earlier.”
Today, Cesarek is that someone for several Minnesota women after they learn that they have breast cancer. She’s a guide for the Firefly Sisterhood, a nonprofit that connects survivors with women who are newly diagnosed in an effort to ensure that no one faces cancer alone.
“Connecting with someone who’s been where you are is really powerful,” said Kris Newcomer, Firefly’s executive director. “It decreases depression, reduces isolation.”
Whenever possible, the Firefly Sisterhood pairs two women who share similar ages, cancer stages and life experiences, Newcomer said.
“Maybe a woman says, ‘My daughter is 25 and body image is important, but I may be missing my breast.’ We try to find a survivor with a daughter in her early 20s,” she said.
Firefly has 135 trained guides, “lighting the way, as a firefly lights the darkness.” (They could use more, especially to expand their diversity in races and languages.) The guides provide experiential, emotional support about diagnosis, treatment, surgery or reconstruction, but they do not offer medical advice or opinions.
Sometimes, a single reassuring phone call will do, or the connection ends when treatment concludes. Some women form an ongoing friendship. It’s up to the women in treatment, whom Firefly calls “sisters.”
Serving family, friends
The Firefly Sisterhood was founded two years ago in Minneapolis, with initial funding by Yoplait, which has a long history of supporting nonprofit organizations involved with breast cancer.
Newcomer wasn’t a breast cancer survivor; she just recognized a need. But during Firefly’s first month, her sister-in-law was diagnosed and had a double mastectomy.
In Minnesota, an average of 3,900 women are diagnosed with breast cancer each year. The Firefly Sisterhood has served more than 300 women in the 21-county metro area in Minnesota and parts of Wisconsin.
In a way, it’s also served their families.
“What we’ve heard and what we know is that there are conversations you can have with someone you might never have to see again,” Newcomer said. “It protects the family and friend relationships. This can be a pressure release valve when you can say, ‘I’m going to go meet with my guide.’ ”
Cesarek confirmed that the outside connection is crucial.
“It can save a marriage,” she said. “Taking that stress that I would normally put on my husband — I don’t do that anymore.”
“Everybody’s different in what they need,” she added, talking about her work as a guide. “But it’s really opening your heart and being there for whatever that person needs. You’re not supposed to know everything, but just be there.”
Cesarek paused. With Stage 4, she knows her prognosis is fatal. But after four years, she’s still mothering, listening, loving — and discovering: “It takes a long time to learn how to keep living when people are treating you like you’re dying,” she said.
To request a guide, visit the website at fireflysisterhood.org and click Get Support. To learn about becoming a guide, click Become a Mentor. Or call 952-582-2972.