Peer Support for women with breast cancer

Firefly Sisterhood is featured on MPR, thank you to Lorna Benson for the report.

When Debbie Blum was diagnosed with breast cancer in February, her loved ones showered her with hugs, prayers and home-cooked meals. That was just what she needed as she started a course of chemotherapy that would last well into summer.But as fatigue from her treatments wore her down, Blum wondered if her exhaustion was normal. The question seemed beyond the ability of her family and friends. “No one,” she said, “really knows what you’re going through other than another survivor.”

So Blum dug out a brochure for the Firefly Sisterhood that she had picked up during a cancer walk. The Minneapolis group fosters mentorships between breast cancer patients and survivors. In its year-and-a-half existence, the organization has made 120 matches in the Twin Cities area.Blum, who lives in Wayzata, signed up and was introduced to Martha Greiner, a 10-year cancer survivor who lives about 20 minutes away in Eden Prairie. Like Blum, Greiner was raising teenage children when she was being treated for cancer. The women became fast friends.

“Every single thing that Debbie is experiencing right now, I have gone through that and I recall it truly as if it was yesterday,” said Greiner.

Breast cancer can be a lonely journey, even for women with lots of support from family and friends. The nonprofit Firefly Sisterhood has found success pairing women fighting the disease with women who’ve survived. That’s not as easy as it sounds. Observers say it can be hard for women who already feel vulnerable to reach out to people they don’t know to guide them on a journey that may not end well. Blum, however, said talking with Greiner, who had a very similar diagnosis and treatment plan, provides reassurance she can’t get elsewhere.

“You know I’m still tired,” Blum said. “I still don’t feel physically normal. And Martha said, ‘You won’t feel that way for a while.’ And it’s so nice to hear that because it’s, ‘Oh good. I’m not behind.'”Greiner even visited Blum in the hospital before her double mastectomy in July.

It was a trip back in time for Greiner. She had to come to the same building where she had been treated a decade earlier.

“It was rather scary for me to walk back there, where it all started for me 10 years ago,” Greiner recalled. “To be there to hold her hand as she waited to go into the pre-op because I know how scary that is.” “Martha prayed with my family right before the surgery and it was just very special,” Blum said.”To let her know,” Greiner interjected, “she was going to come out of it OK.”

Patient peer mentoring is not a new idea. Similar programs have sprung up around different cancers and other conditions from diabetes to heart disease. And even though it seems like a straightforward idea, starting and sustaining the programs is not. Some clinics try to match patients with local mentors. But the Cancer Survivorship Clinic at the University of Minnesota, for example, does not.

Physician assistant Karen Pennington says health privacy restrictions complicate the process for clinics, making it a time-consuming endeavor. “It just gets a little bit hard because you have to ask the initial person and then make sure it’s OK with them and then check with the other patient and make sure it’s OK with them,” said Pennington, who recently matched two breast cancer patients who are in their 20s because they both had infants.

“I can’t imagine a breast cancer diagnosis in my 20s, let alone, now I have less than a six-month old child to figure out how to take care of in the midst of chemotherapy and radiation and everything. So I connected the two of them,” Pennington said.

In smaller communities, mentor programs are even tougher to launch. Members of the Hastings Breast Cancer Support Group wanted to reach out to more newly diagnosed women in their community, but getting referrals from area clinics was inconsistent. So Diane Davies helped create Voices of Hope, a collection of personal breast cancer stories from Hastings area survivors. Hospitals and clinics in Minnesota have distributed over 5,000 of the DVDs to patients.Davies says she knew the DVD was a success when a woman made the 45 minute trek from New Brighton to attend a support group meeting one night. “She walked in the door and she called each one of us by name. And we said, ‘What?’ ‘Well,’ she said, ‘I’ve watched that DVD so many times, I know you all.'” Grant money, however, has run out for the project and Davies says the group must now charge a small fee for its DVDs, greatly limiting its distribution.

Funding has not been a pressing concern for the Firefly Sisterhood. Donations from Yoplait yogurt launched the Twin Cities group and several local partners also support it financially.

Executive Director Kris Newcomer says her organization is intentionally lean in the hopes that the model can be replicated in other Minnesota cities, and possibly elsewhere in the country. “It’s not everybody’s cup of tea,” Newcomer said. “For some women, they would never do this. But some women really need it.”

For Debbie Blum, however, cancer connected her with Greiner and a friendship that will move beyond cancer and into the next phases of their lives.”Martha has helped me so much that it has helped turn a curse into a blessing,” Blum said.

“I love her, she is my sister. I love her,” said Greiner. “It’s just a beautiful friendship.”

Leave a Reply

You can use these tags: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>