Judy Erdahl may not live to attend the 2019 Midwest Metastatic Breast Cancer Conference this November, that she founded with a friend in 2017. But she’s at peace with that.
Erdahl, 57, of Minnetonka, has lived with stage 4 metastatic breast cancer (MBC) since 2011 and has been an ardent fundraiser for MBC research, to prevent cancers of all kinds from metastasizing.
She’s been in hospice care since February.
Erdahl, a former Minnetonka School Board chairperson, was first diagnosed with breast cancer in 2006. At the time, she underwent a mastectomy, and chemo and radiation treatments. She remembers leaving her doctor’s office in 2011, elated that she’d reached the five-year benchmark cancer-free.
But her joy was short-lived. Within days, her doctor called her. Additional tests he’d taken revealed that cancer cells had spread through her bloodstream elsewhere in her body. She had stage IV metastatic breast cancer.
It was devastating news.
Having supported the pink ribbon breast cancer awareness program when first diagnosed and benefiting from the support breast cancer patients receive, Erdahl said it’s different when you have Stage IV breast cancer.
“With breast cancer, you’re part of this pink machine, but with metastatic breast cancer (MBC), nobody wants to talk to you. I’ve had friends removed from breast cancer support groups because they’re too scary. They have MBC, which means it’s terminal. No one wants to hear them talk about it.”
“The pink story” prevented more research into MBC, which would also help with other cancers that metastasize, Erdahl said.
“I was angry. The way the cells do that is probably very similar,” Erdahl said. “That’s when I started the advocacy for more MBC research.” And Team Judy formed.
A friend, Maureen Kvam described it like this: “Team Judy is a group of longtime friends who are passionate about raising research dollars for Metastatic Breast Cancer. Team Judy supports seed research grants for metastatic breast cancer at the Masonic Cancer Center-University of Minnesota. Over the last nine years we have raised over $170,000, with 100% of donations going to the researchers and their labs.”
They rallied around her and participated as Team Judy in the Twin Cities Race for the Cure 5K and walk event, when she was first diagnosed. Then in 2011, she learned it was metastatic.
“It was game changer,” Kvam said. “That winter, Judy decided we needed to raise money locally for local research at the Masonic Cancer Center.”
But Team Judy wondered how its relatively small fundraising efforts could possibly have any impact. Dr. Douglas Yee of the Masonic Cancer Center explained to them that their contributions provide seed money to help fund specific research projects by graduate students.
Every year, Dr. Yee invites Team Judy to the university, where they can look at a list of research projects and select the ones they want their money to go to. Then, at the annual wine night fundraiser, doctors and researchers meet with the donors providing updates on their work.
“We have a direct connection,” Kvam said. “Here is the researcher that we’ve been funding.”
Their 2019 wine night was July 18 and raised $16,000. Overall, the group’s efforts have raised $170,000 for research.
Erdahl also reviews seed research grants for the Masonic Cancer Center. With all her years living with MBC and working with her doctors and experimental drugs and treatments, she reviews grant applications from the patient’s perspective.
“I’m the one who knows that no one will want to do this chemo,” Erdahl said. “Or ask, will it help my quality of life? Is it worth it to go through the side effects?”
Erdahl is also making a difference by founding the Midwest Metastatic Breast Cancer Conference. The third annual conference for those with MBC is Saturday, Nov. 2, at the Bloomington Sheraton Hotel. The conference provides MBC patients, their families and caregivers with information, support and networking opportunities.
Registration has just opened for this year’s conference (See information box).
Erdahl attended her first MBC conference put on by a nonprofit called “Living Beyond Breast Cancer” in Philadelphia.
“I walked into the hotel, into the conference area that first night and thought, “Oh my gosh. Everybody here is just like me, finally. I still had my long hair so I still looked normal, but you’re still living with a terminal illness and things are just different. People don’t understand what you’re dealing with even though you look normal at the time.”
Bolstered by what she learned and the people she met and networked with, she attended two more of the annual conferences. After her third, she and a friend Leslie Gotlieb decided to do something similar in Minnesota.
Gotlieb had connections with the Susan G. Komen board in Minnesota; Erdahl had her connections with the Masonic Cancer Center. She’d also just completed advocacy training.
“So I thought for my project, ‘OK, I’ll go big. I’ll throw a conference here in Minnesota.’”
She and Gotlieb received backing from Susan G. Komen, the Masonic Cancer Clinic, and Living Beyond Breast Cancer. Their first conference was sold out.
“We had a waiting list,” Erdahl said, “and I felt just horrible that we couldn’t have more people in the door but the fire marshal wouldn’t allow it. We had a packed standing room at the Sheraton. Women were crying, thanking us. So when we left that day, we immediately booked the lower level of the hotel for the next year.
Susan G. Komen Minnesota Co-Executive Director David Egan credits Erdahl and Gotlieb for giving the organization the impetus to put on the conference.
“Folks like Judy have changed the way we fund research. Now a greater number of dollars are invested in MBC,” Egan said. “The bottom line is, there are those dying. Judy’s hard work and networking has been really useful.”
More than 300 attended the conference in 2018, coming from a five-state area in the Midwest. It was gratifying. And sad. Gotlieb had died in September 2018, two months earlier.
“That’s the reality of the disease,” Erdahl said. “But we’re moving ahead and hoping we’ll get 300-350 this year.”
Erdahl made her doctors promise they would let her know when it was time to stop treatment. When she made the decision to have hospice care, three of her friends came over with croissants, and they spent the time crying and laughing. She’s thankful for hospice.
“They swooped in, they deliver all my meds, my oxygen tank, they come to see me,” Erdahl said. “It’s not something people should be afraid to do but I understand. It’s hard for people to know when to stop.” She paused, then laughed. “I thought I wouldn’t be alive for wine night.
“My body is dying,” Erdahl said, matter-of-factly. “But my pain meds are under control. It’s odd. It’s like I’m feeling less than myself. Things are slowing down. I’m removing myself. I see myself not being here more frequently.”
Yet, when she is able, she continues to oversee the planning for this year’s conference, with the printed program due to arrive any day.
Also, her friends continue to drop by; some stop in for a glass of wine, others drop off meals, weed her garden or do a load of laundry. And two weeks ago, Erdahl was able to fly to Indiana to see the home her son and daughter-in-law just bought.
“The reality is that I’m not going to go back there again.”