At event ‘For Women Only,’ ladies urged to be advocates for their own health

Photos by Ginny Kropf: Kelly Swanson, a surgical technician at Medina Memorial Hospital, talks with Medicare specialist Liz Schyve, who had an informational table at For Women Only.

(Left) Kim Gray, chief nursing officer at Orleans Community Health, welcomes guests to the annual For Women Only Thursday at White Birch Golf Course in Lyndonville. (Right) Lori Condo, assistant comptroller at Orleans Community Health, introduced a video paying tribute to those whose lives have been touched by cancer – survivors, those currently fighting and those who have been lost.

LYNDONVILLE – Orleans Community Health’s 27th annual For Women Only Thursday night at White Birch Golf Course was all about the journey – from early detection to advocacy, to the ongoing fight that so many must take on, according to Scott Robinson, director of Marketing, Communication and Outreach.

The event was a full team effort, Robinson said, from early on in planning when the idea was brought up to have panels and allow for individual speakers to tell their stories.

“Anne, Betty Sue, Megan and Kate shared their stories and has us all glued to each word,” Robinson said. “The expert panel was another great addition that brought even more backgrounds to the discussion. Cancer affects so many – this evening was an opportunity to come together and lift one another up.”

The evening began with a welcome from Kimberly Gray, chief nursing officer at Orleans Community Health, who thanked major sponsor Baxter Healthcare and extended appreciation to vendors, table sponsors, volunteers and speakers.

A highlight of the program, titled “The Journey,” was the stories told by four speakers – Anne Downey, Betty Sue Miller, Megan Pillar and Kate Backlas.

Downey’s story focused on early detection and her journey, which began with early detection of colon cancer in the summer of 2022.

“My faith was tested, but strengthened after early detection and removal of cancerous polyps,” Downey shared.

Guest speakers, who shared their stories of cancer survival, are introduced by Kim Gray, right, at For Women Only. From left are Kate Backlas, Megan Pillar, Betty Sue Miller and Anne Downey.

Miller encouraged all women to be an advocate for themselves, and shared her story of breast cancer and undergoing a lumpectomy, radiation and then chemotherapy.

“No one is going to cope the same, but you have to advocate for yourself,” Miller said.

Pillar, the former Megan McGrane of Medina, was only 31 and not married yet when she learned in 2015 she had a blood cancer she had never heard of.

Her journey of cancer was one of unexpected turns, resilience and, most importantly, learning how to speak up for herself. Pillar had moved to Florida after high school, but 10 years later when her mother was battling her third round of breast cancer, Pillar returned to her home in Ithaca to be nearer her. Her mother died that winter, and Pillar couldn’t help but wonder if she would breast cancer, too.

Two years later, in 2015, Pillar and her future husband were planning a life together, when a routine blood test showed something wasn’t right with her blood cells. A subsequent bone marrow biopsy determined she had Multiple Myeloma, the disease which took Colin Powell, Tom Brokaw and Roy Scheider from Jaws.

“I was initially told I needed to start chemo right away, followed by a stem cell transplant,” Pillar said.

Because she would be in the hospital for months, she chose to go to Roswell Park, knowing it had helped others in Medina. There, she learned she might have five to 10 years to live. She underwent subsequent testing and was told she shouldn’t have children. A few weeks later she got better news – that the cancer wasn’t in its later stages yet, so she could “watch and wait.”

During this time she found a cost-free women’s cancer retreat called “Mary’s Place by the Sea” in Asbury Park, N.J. There she met a volunteer who told her she needed to see a Myeloma specialist at Mount Sinai in New York City, who was accepting new patients.

There, they found something completely missed by two other hospitals – T-Cell Large Granular Lymphocyte Leukemia, a second rare blood cancer she had never heard of.

 Through it all, Pillar said John, now her husband, was her rock. Today, at 41, they have two boys, 4 and 6.

In October she started a clinical trial at Mount Sinai – one of only 21 people in the country receiving a drug created to directly target the mutated T-cells.

“It’s far from easy juggling traveling five hours each way, work, young kids, weekly local labs and treatment every four weeks in the city – but it’s worth it,” Pillar said.

She is encouraged, as early data looked promising, she said.

Melanie McAdoo of Medina, left, had a booth at For Women Only, selling a variety of items, including Koozies, T-shirts, Buffalo Bills glasses, soy wax melts, earrings and key chains. Carrie Bias of Ridgeway, attending her first For Women Only, looks at the selection of earrings.

Backlas, the next speaker to share her story, said while everyone’s journey is different, the word “cancer” is always gut-wrenching.

She was 32 and planning to have another child when she was diagnosed with breast cancer in February 2016. In the fall she underwent a double mastectomy with reconstruction.

“This was a small price to pay for the opportunity to be with my husband and watch our daughter grow up,” Backlas said. “I cut my waist-length hair, and felt a sense of control.”

She suffered weight loss, fatigue and nausea, but she stayed positive. Doctors told her she couldn’t get pregnant after chemotherapy, but in September 2019 she was amazed when a pregnancy test came back positive. She gave birth to a daughter in May 2020.

During this time her mother was fighting her seventh bout of cancer, but in spite of it, always stayed positive, Backlas said. Her mother lost her battle in February 2022.

Backlas faced anger and depression, but knew she needed to do something to help others like herself and her mother.

She has an organization called the Nancy Beicke Project, in which she delivers packages to Roswell Park and their satellite on Park Club Lane in Amherst, as well as to Great Lakes Cancer Care and Oishei Children’s Hospital oncology unit. People can message her with specific requests for packages for loved ones or themselves. She sometimes does individual fundraisers as well. At Christmas, she collects pajamas for Oishei Children’s Hospital Oncology unit. Last year they collected 354 pairs of pajamas.

Lori Condo, assistant comptroller at Orleans Community Health, thanked the ladies for sharing their stories.

“Your courage, honesty and strength inspire us all,” Condo said. “We are truly grateful for your willingness to be vulnerable and share your experiences – reminding us that while every journey is unique, we are all connected by the compassion and support of this community.”

At thas time, Condo introduced a video honoring all who have been touched by cancer – survivors, those currently fighting and those we have lost.

“This video tribute is a celebration of their strength and a reminder of why we gather here tonight – to ensure no one faces cancer alone,” Condo said.

Megan Johnson, right, director of Orleans Community Health Foundation, introduces the Resource Panel at For Women Only. From left are Danielle Figura, licensed clinical social worker and director of Community Services with Orleans County Department of Mental Health; the Rev. Randy LeBaron, pastor of New Hope Community Church in Medina and spiritual care counselor with Hospice of Orleans; Elizabeth Schyve, benefits consultant with Walsh Duffield; Darlene Muehlbauer from the Cancer Services Program with GOWN; Pamela Eaton, nurse practitioner with Orleans Community Health; and Heather Miles, radiology technician at Medina Memorial Hospital.

The evening’s program continued with Megan Johnson, director of Orleans Community Health Foundation, who introduced the Resource Panel, a first-time addition to the event. This included the Rev. Randy LeBaron, pastor of New Hope Community Church in Medina, president and evangelist at Go Scatter Ministries and spiritual care counselor at Hospice of Orleans; Elizabeth Schyve, Medicare benefits consultant with Walsh Duffield; Darlene Muehlbauer, Cancer Services Program with GOWN, providing financial help and resources for those in need; Pamela Eaton, certified nurse practitioner with OCH’s Medina Healthcare Center, certified advanced aesthetic nurse practitioner and certified wellness and medical eight loss practitioner; Heather Miles, radiology technician at Medina Memorial Hospital; and Danielle Figura, licensed clinical social worker and director of Community Services with Orleans County Mental Health.

After answering questions from Johnson, the panel took questions from the audience. Topics addressed included the five stages of grieving from the Rev. LeBaron and his duties at Hospice and how children process grief; Schyve’s sharing of the need for an adequate insurance plan and what Medicare covers; Muehlbauer’s information on certain cancer screenings for uninsured or underinsured; Mental Health’s individual and group therapy; and more.

The evening also included a buffet, vendors with a health theme, basket raffle and 50/50 drawing.

Jeanne Crane, former nurse at Medina Memorial Hospital, has attended many of the For Women Only events, and said the new format was a wonderful improvement to the program. She said it is a wonderful opportunity for women to learn more about their health, so they know they are not alone and support is there for them.

Jennifer Morgan, a nursing supervisor at Medina Memorial Hospital, has also been to many of the events and said she likes the new informational format.

Condo announced at the conclusion of the evening that the event had raised $3,200 for cancer services programs.