Tying it all together

Breast cancer is ugly, but the Pink Ribbon Connection offers help

According to Chinese lore, the gods tie an invisible red cord around the ankles of those who are destined to meet one another in a certain situation or help each other in a certain way. It’s an analogy for how fate draws people together. For one local organization, people bound to meet each other are connected, not with a red cord, but with a pink ribbon.

Using the organization’s cozy Fountain Square office space as a home base, Dori Sparks-Unsworth, Pink Ribbon Connection executive director, spends her days raising awareness about the group by traveling around Indianapolis and the rest of the state and reaching out to breast cancer patients.

PRC was founded in 2006. In the two years before Sparks-Unsworth was hired as the organization’s first executive director, the board members did strategic planning and hammered out what would become the group’s three-fold mission statement. That statement, Sparks-Unsworth says, is succinct and simple.

“It’s very pointed and direct,” she says. “It’s easy for me to tell them we offer emotional support, local resources and education for breast cancer patients and their families in Indiana. That says everything. When you walk in here, we want you to know we care for you.”

One day, Sparks-Unsworth saw a woman walking with her head down, shuffling across the street to the PRC office. She walked through the front door, stood on the welcome mat, looked around the living room-like setting and burst into tears.

“She said, ‘You know what? I’ve been saving that up. I needed a safe place to let it out,’” Sparks-Unsworth recalls. “She said, ‘I’ve been using all my energy to stay strong.’ We got to sit her on our couch, and she was able to chat and let things out.”

Many patients come to PRC initially for the peer counseling. Trained volunteers, many of whom are at the other end of treatment, connect with newly diagnosed breast cancer patients. Sparks-Unsworth travels around the state offering peer counseling training. Through two recent grants (one from Honda and another from Kelly Cares Foundation), PRC is expanding its reach in an effort to further localize those services. After all, talking is a practical and important part of recovery. Sparks-Unsworth hopes peer counselors and patients will be able to meet in person for coffee, chats and, when needed, hugs.

“Doctors already know that if you have a circle of care around you and you feel like you’re being tended to, your medical outcomes are actually better,” she says. “No one knows why that happens, but they know that, if women operate in isolation or have too much other stress and they can’t talk to anybody about it, it just damages their ability to heal.”

Connecting locally

PRC volunteers will distribute more than 1,000 copies of their 13-tab organizer each year. It’s a resource packet for patients, a guide for those newly diagnosed with breast cancer. On the front tab is the organization’s helpline and peer counseling number.

Although navigating cancer treatment can be byzantine and scary, connecting with the resources PRC offers is easy, says Beth Kiggins, board vice chairwoman.

“It’s a phone call away,” she says. The resources offered are practical and tangible: A call to PRC can put prosthetics, bras, wigs, scarves and hats in patients’ hands. PRC also offers meal services such as freezer meals and the delivery of those meals. The organization does not require income verification.

After a lumpectomy followed by a bilateral mastectomy, Lynn Windler received prosthetics, which made her sweat profusely while she exercised. She was frustrated and looking for an alternative by the time Sparks-Unsworth showed up to speak at her cancer support group. Windler got an invitation for PRC’s Bras and Breakfast event this summer.

“I thought, I really don’t need any bras, but I’m going to call and ask if they have something that might help me for this exercise thing,” she says.

When Windler got to the event, she was impressed by the setup: tables with clearly labeled bras, an ample breakfast spread, gracious volunteers and private fitting rooms. She left with two sets of hand-knitted, microfiber-filled prostheses — “No questions asked. No charge for anything,” she says. “The Pink Ribbon Connection doesn’t turn anybody away.”

Added independence

Ellen Roberts was diagnosed with breast cancer in 2009, a few days after her 31st birthday.

“My breast surgeon who did my initial surgery said, ‘Cancer is like getting on a speeding train. You don’t know when to jump off and feel the feelings. They just kind of come up,’” Roberts says. “And they do. You really have no prediction of when that’s going to happen. It may happen when you’re at work. It may happen when you’re walking down the street someday, but they kind of just pop up.”

Roberts had a bilateral mastectomy. After the surgery, even though she had no more tissue, she developed more tumors. During a checkup, her radiologist asked if she was talking to anyone. 

“At that point, I really wasn’t,” she says. “(My radiologist) really suggested that I start telling my story and talking things out with people and getting some support. That’s when I started seeking different groups. That’s probably when I started looking for Pink Ribbon Connection. I wanted to seek out more information than just what my doctors were telling me.  Not necessarily other opinions, but kind of, what else is out there?”

Roberts headed to PRC for the educational programs, held each month at the organization’s office and featuring presentations in a conversational setting. She stayed for the emotional support. When cancer again showed up in her body, this time in the form of ovarian cysts, she found herself leaning more on the organization. Sparks-Unsworth brought her meals and gave her an empathetic ear.

“I am a person who likes to deal with things on my own,” Roberts says. “I just didn’t feel comfortable putting all of that understanding on my family. It’s really helped for an organization to provide that support that I’m hesitant to ask those really close to me for.”

The pink ribbon runway

Each year in October, PRC holds its largest fundraiser: The Breast Cancer Survivor Fashion Show Luncheon. Survivors set up a runway with professional lighting. It’s a time of pampering for the models — all survivors, doctors or nurse navigators — who spend the day in hair and makeup before they walk the runway.

“It feels like you’re at a real fashion show,” Sparks-Unsworth says. “But when the women walk the runway, we tell their personal story instead of talking about their clothes. Any notion of a superficial event is gone.”

It’s an opportunity for newly diagnosed patients to find their own role model in the war against cancer. Women of all ethnicities and ages walk the runway. “They’re strutting their stuff on the runway, looking so vibrant and alive. There’s such an inherent hope in that for all of those people in the audience that have been recently diagnosed,” Sparks-Unsworth says. “They look at that runway and say, ‘You know what? I’m going to do this.’”

Roberts walked the runway in 2015 and will, at some point, walk it again.

“One thing that I noticed, in a lot of my pictures, my head was down as I walked the runway,” she says. “I want to come back at some point and lift my head up and look out and look forward. And I’m getting there.”

By Jenny Elig
Photo submitted: Ashley Newsom and her daughter