Beth Herold never will see cancer "as a gift," but she doesn't fault those who do. She's not much for pink, either, even though she has breast cancer.
Herold, 44, of Fridley, has stage 4, or metastatic, breast cancer. That means it has spread to other organs -- 10 organs in her case.
That also means she avoids traditional support groups. "You don't want to wreck their hope," Herold said.
October, dubbed "Pink-tober" because of an onslaught of pink on football players' cleats, coffee-bean bags and yogurt tops, is all about hope. About the cure. So, women like Herold move through the month feeling that it's not about them.
"Unless I get hit by a bus," Herold blogged recently on her CaringBridge site, "breast cancer will take my life."
Others are equally candid. An NBC news segment in mid-October featured the frustrations of many women with stage 4 cancer. A petition posted to the website change.org asks that October be changed to "Metastatic & Breast Cancer Awareness Month," to include "a group that goes unnoticed in a sea of pink."
Ironically, one of those stage 4 women was Susan G. Komen herself.
In the Twin Cities, though, heartening change has arrived.
On Saturday, Herold joined about two dozen other women with stage 4 cancer at a workshop at the University of Minnesota Continuing Education and Conference Center. "Celebrating the Ordinary" featured Henry Emmons, M.D., speaking about finding joy in chaotic times, and Rachel Freed, a licensed social worker, helping them think about what legacy they hope to leave.
'We don't cry that much here'
The workshop is one element in a new outreach that also includes evening seminars and, best of all, twice monthly support groups at the Virginia Piper Cancer Institutes at Unity Hospital in Fridley and Abbott Northwestern Hospital in Minneapolis.
The groups, funded by the Minnesota Affiliate of Susan G. Komen for the Cure, evolved as oncology nurse Paula Colwell listened to women and realized "that we were not meeting the needs of this population."
In 2011, with a grant from the Minnesota Cancer Alliance, Colwell held focus groups with women with stage 4 breast cancer at four Allina hospitals. The women wanted emotional support, of course, but also specific information about finances, when to quit work and other challenges they didn't want to bring up with the many women whose futures are bright.
"We can talk about hospice, planning our funeral," Herold said. "We don't cry that much there. We pick celebrating our lives, rather than surviving our lives."
Tina Ogren, joining Herold over coffee last week, nods in agreement. She and Herold are in the Unity support group together. They were one grade apart at Osseo High School as teens.
'In the cusp of grace'
Ogren, 46, was misdiagnosed in 1999 at 30, her troubles written off as "an inflamed mammary gland." Two years later, in the emergency room for excruciating pain, a doctor took her seriously and diagnosed stage 2 breast cancer. She had a lumpectomy and was cancer-free until 2008, when it returned and spread to several organs.
"They always say that, once you get to five years ..." She holds up one hand. When her cancer returned, she said, "I was way past five years. Until we got our support group, you scare people. It's better now."
Karen Denn, 49, of White Bear Lake, attends the Abbott group and finds it equally comforting. "There's no facade," she said. "You know people understand."
Denn's diagnosis came two years ago. She had a bilateral mastectomy, then six months of chemotherapy, reconstruction and radiation. On Jan. 4 of this year, she learned that the cancer had spread. Right now, said Denn, the mother of two young adult children, "I'm living in the cusp of grace."
Laurie Kelzenberg, breast cancer nurse coordinator at Unity, notes that while their cancer won't go away, many stage 4 women experience blessed idle periods free from treatment, with no evidence of disease.
"They know it's not going to last forever," Kelzenberg said, "but they're still living life."
Ogren, who lives with her boyfriend in Fridley, is looking forward to participating in a clinical trial, balancing her emotions between "being hopeful and realistic."
Preparing a legacy
Herold took her two sons, now 17 and 15, to Paris in 2009, and remodeled her kitchen with her husband, Paul. She's participated in three three-day breast cancer walks. She is excitedly planning to see her older son graduate from high school, something she didn't dare assume when first diagnosed in 2007.
In September, Denn and her husband, Ron, camped for four days in Wisconsin and now are planning a trip with friends to the Florida Keys. On Nov. 21, Denn turns 50, and will do exactly what she wants to do, which is be surrounded by family for Thanksgiving, her favorite holiday.
"Fifty is going to be wonderful," she said. She won't be buying a red convertible, though.
She already did that.
She's putting together a box for each of her children and writing down stories of their family history. "You want your children to know what this legacy meant to you," Denn said.
"But, hey, I'm still here."
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