Survivor series: breast cancer stories shared
BLAIRSVILLE--"Everyone in the world can be sympathetic, but unless you've been there, you don't really understand."
Cleo Free's words don't mean she doesn't appreciate the compassion shown to her by others. But she's a firm believer that those who haven't survived cancer, as she has, can't comprehend the full extent of emotions experienced by someone who has lived with the disease.
That's one reason why she agreed to share her thoughts with other breast cancer survivors at one of four Pink Ribbon Reflections events held in Indiana County during the month of May.
"Everyone's journey is different in terms of family support, job situation, so it's been very interesting to see how each person has dealt with the variables in their story," said Sue Majoris, nurse navigator with the Women's Imaging Center at Indiana Regional Medical Center.
"It's a good opener for discussion."
Pink Ribbon Reflections is a partnership between Indiana Regional Medical Center and the American Cancer Society. This year marked the first time for the program. Because of its success, Majoris said there are plans to launch similar groups and workshops.
"We want to reach out to the women who are attending these presentations to see what they would be interested in," whether it be advice on managing the side effects of breast cancer or tips on how to talk to doctors, said Lisa Lotito, senior cancer control specialist with the American Cancer Society's Indiana chapter.
"We're trying to cover all different areas of the county with this program," Lotito said of Pink Ribbon Reflections.
Free, of Burrell Township, was the presenter at the second event in the series, held May 16 at Pie Cucina Restaurant in Blairsville. Following her remarks, the floor was opened for a discussion and questions. The women talked openly with one another about their diagnoses, their hopes and fears, treatment and support.
Sharon Nelmes, who will give the final presentation in the series next week, recalled going into the doctor's office with her daughters and having the doctor repeatedly reassure them, "You're mother is not going to die."
"And I think it finally sank in for me," she said.
"The thing about cancer is, it comes on fast, people get diagnosed and they have to make a treatment decision right away," said Majoris. "It's boom, boom, boom--it's a whirlwind."
"I think it's still stuck in our mind of our mother's generation," Nelmes said. "Back then, a lot of people did die from breast cancer. The mental hangover is still there, and you have to get past that."
Indiana Regional Medical Center and the M. Dorcas Clark Women's Imaging Center have established a program addressing just that issue, called "It's Not Your Grandmother's Breast Cancer."
Many of the women attending Wednesday's event noted how, although they were the ones suffering from breast cancer, they often had to play the role of supporter to their family and friends.
"It's easier being the patient than the family," said Karen Jones, of Blairsville. "Sometimes it's easier to go through it than to watch someone go through it."
"I think, as the mother, I was always the caretaker," said Helen Gromley, of Home. "And when this happened, I had to give up some of that control, and that was hard for me."
Each woman presenter "provides a different spin and a different flavor to each of the evening's presentations," said Lotito.
She and Majoris approached four women from different areas in Indiana County, asking each to present her breast cancer survival story on a Wednesday evening in May at a different area restaurant.
"They're a lot of the women we knew," Majoris said. "A lot have taken the initiative, working with...support groups and working with other women.
"We looked at that pool of women, and those are the women we asked first."
Judi Williams presented the first Pink Ribbon Reflections, at Luigi's Restaurant in Clymer. Williams, of Penn Run, is a three-time cancer survivor who owns the Executive Suite hair salon in Indiana.
Williams volunteers with the American Cancer Society's Reach to Recovery program, where breast cancer survivors become mentors to women newly diagnosed with the disease. She also helps administer the Cancer Society's "Look Good...Feel Better" classes, devoted to helping breast cancer patients boost their self-esteem through cosmetic tips that address the side effects of chemotherapy and radiation.
"I think she just has a big heart and she realizes how important it is to have this support," Majoris said of Williams. "She's put herself in a position where she opens up and does the same thing for other women."
Free also is a Reach to Recovery volunteer, where one-on-one support is given to those newly diagnosed with breast cancer by women who have been a survivor for at least one year. She also serves on the Cancer Society's Indiana chapter unit leadership team.
"Cleo has been a longtime volunteer with the American Cancer Society," said Lotito. "She's just always been involved through every aspect," including the Relay for Life fundraising event.
This past Wednesday's program was led by Cindi Kordell, owner of the Homemade Restaurant in Home.
Kordell was a natural selection, since Majoris and Lotito were looking for restaurant locations for the presentations.
"Cindi has also opened herself to ministering to women through her business," Majoris said. "The customers all knew she was on a journey with cancer and I think it really impacted people in a very positive way."
Nelmes, of Saltsburg, will speak at the final Pink Ribbon Reflections event Wednesday at Marchitelli's Kiski Valley Inn in Saltsburg. The program will begin at 7 p.m., after dinner is served.
"I've pretty much walked this journey with Sharon," from diagnosis to treatment, Majoris said of Nelmes. She was one of Majoris' first patients when she started as a nurse navigator.
"She is such a strong woman," Majoris said.
Nelmes was one of the first dozen women in Indiana County to utilize a new therapy offered at IRMC, called mammosite radiation.
The procedure inserts a radiation-filled catheter into the breast once the cancer is removed, ultimately conducting the radiation therapy from the inside out.
The $10 fee for the entire Pink Ribbon Reflections series will be applied to the American Cancer Society's research, support and advocacy efforts.
Majoris noted she and Lotito made an effort to spread the program out to different areas in order to gain a new audience each time. "We knew we'd have a core group, but because we were changing locations each week, we'd get different women," Majoris said. "It's a down-home, fun kind of meeting. We didn't want it to be structured. It's intimate and nice."
The idea for Pink Ribbon Reflections stemmed from an Indiana Regional Medical Center/American Cancer Society- sponsored event at Kay's Arena last fall, themed "Tough Enough to Wear Pink."
"The funds we gained from that, we wanted to go back into the county," Majoris said. That was when they came up with the concept for Pink Ribbon Reflections.
"Because the hospital and the American Cancer Society work so closely together, we decided to reach out and hold a local service event," Lotito remarked.
"We wanted something that would reach out to survivors, but also show them that there are other resources right here in the county, like the Women's Imaging Center," she said.
Lotito approached Free about serving as a Pink Ribbon Reflections presenter based on her involvement with cancer support groups and American Cancer Society events.
Free, who has been involved with the American Cancer Society for the last 13 years, was hesitant at first--"Not because of the subject matter," she emphasized, but because she didn't like public speaking. But knowing that she would be sharing her story with a group of her peers, women who had gone through the same journey she had, made the decision easy.
Breast cancer was in Free's family--her mother had been diagnosed with it.
In 1989, Free was diagnosed with a benign, slow-growing brain tumor, located at the top of her spine.
She had one surgery right after her diagnosis. The goal was to break open a cyst that had grown around the tumor, to help relieve some of the pressure on her spine.
Removing the tumor would have been too risky, she was told by her doctors.
"With the technology back then, they said they would do damage to the spinal cord," she said.
Three years later, Free received the breast cancer diagnosis. The lump had shown up in her annual mammogram--"I can't stress enough, you need to get them," Free said. A biopsy was ordered and, the evening before her daughter's bridal shower, Free's doctor called with the bad news: it was cancer.
"You just feel like someone kicked you in your stomach or knocked your feet out from under you," she said.
The lump and the tissue surrounding it were removed through surgery. Then, three weeks later, she had to return to the operating room to have more tissue removed.
She was treated with 35 sessions of radiation therapy, but did not have to undergo chemotherapy.
In 2004, Free went under the knife again, this time to remove the brain tumor, thanks to improved technology. Aside from the chemotherapy and radiation after the brain surgery, she also had two and a half months of rehabilitation therapy, where she had to relearn how to walk.
Free has been in the clear since then. But recently, she discovered another lump in her breast through self-examination. Two weeks ago, she had a biopsy to determine if the lump was a cause for concern. "It was OK," she said. "But my doctor wants to keep an eye on it."
Free has remained involved with the American Cancer Society, but she also leads a program of her own--the Phoenix Cancer Support Group, which meets every Thursday at the ACS office in Indiana.
She started attending the group in 1993 with her husband, Chuck. A year later, she was heading up the group herself. "I got shanghaied," she joked. "I had been going for about a year, when the guy who ran it had to move out East. Nobody else would take over, and I have a problem saying no sometimes."
Free recommends that anyone who has been given a cancer diagnosis find a support group.
"They've been there," she said. "They know what you're going through.
Chuck Free originally attended the group as part of his wife's support team. But two years ago, he was diagnosed with prostate cancer.
In December 2001, Cleo Free was chosen to carry the Olympic Torch as it made its way through Pittsburgh. She was selected based on an essay submitted by her daughter, Tracy.
"She wrote this amazing letter on people you admire and why," Free said.
Free was the first person to carry the torch in Pittsburgh--former Pittsburgh Penguins goalie Tom Barrasso's daughter was the last.
Despite her fear of public speaking, Free said she is glad she agreed to become involved with the Pink Ribbon Reflections series, and was very pleased with the way the program was presented.
"I think it's great, and I think the small groups are the best because people will talk," she said. "Once they start talking, you have lots of good stuff that needs to be said.
"These are things we need to talk about. It makes a world of difference. There is so much--it's such a shock" after being diagnosed.
The American Cancer Society is teaming up once again with the hospital this fall for a "I Can Cope" series, educational classes for people facing cancer, their families, friends and caregivers.
"I'm very pleased we have such a close working relationship with the hospital," Lotito said. "It makes the job easier when we can coordinate efforts instead of reinventing the wheel each time."
Anyone interested in joining the Phoenix Cancer Support Group may call 724-248-1814.
Those who are interested in attending the final Pink Ribbon Reflections presentation Wednesday in Saltsburg are welcome to come; no reservation is necessary. For more information, call Sue Majoris at the M. Dorcas Clark Women's Imaging Center at Indiana Regional Medical Center, 724-357-8081.
