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Support group aids people with multiple myeloma, a 'roller coaster' disease

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Support group

Kelley McAfee, right, meets with Scott and Jessica Sullivan and their son Max during a meeting of the Adirondack Multiple Myeloma Support Group that met outside at Rocksport in Glens Falls during the summer. The support group is now meeting virtually.

Traci Wallace was a long-distance runner when she noticed pain in her ribs at the end of 2016.

By September 2017, she had broken her lower left leg and her spine was about to compress. She had a tumor that ran the length of her right arm.

After having surgery on her leg and a bone biopsy, the Gansevoort woman was eventually diagnosed with multiple myeloma, a rare blood cancer.

“I could tell by the way the receptionist called me,” Wallace said. “I’m like, ‘This is not good.’”

She faced her diagnosis with stoicism, until doctors told her she would never run again.

There is no cure for multiple myeloma, although a stem-cell transplant — the new term for a bone marrow transplant — can help.

But only for so long.

“When I had my transplant, they told me a good transplant, maybe five to seven years,” Wallace said.

Just after Wallace received her transplant on April 12, 2018, she was on a myeloma support group website and found Kelley McAfee, a Queensbury woman also fighting the disease.

McAfee’s symptoms began in the fall of 2015 with some chest discomfort, and the pain eventually moved to her spine.

“I walk, I do yoga, I garden. I work and play hard,” McAfee said. “So I kept saying, ‘Oh, it’ll get better. It’ll get better.’”

After an MRI and blood work, she received a call from her doctor to go to the emergency room immediately.

“I had seven compression fractures of my spine, and I was very anemic, my kidneys were starting to fail and my calcium was excessively high, which puts me at risk for seizures,” she said.

A bone marrow biopsy confirmed a diagnosis of multiple myeloma, a disease that McAfee, a 52-year-old nurse at the time, knew very little about.

“It’s very rare. About 30,000 cases are diagnosed in the United States every year, so it’s a very limited population,” McAfee said. “So you don’t hear about it a lot. It doesn’t get a lot of air time.”

While in the hospital, McAfee had a bad reaction to a blood product she was given, acquired pneumonia and landed in the intensive care unit, barely skirting death.

She was in the middle of working on her doctorate and realized she wouldn’t be able to complete her studies.

“The loss of having to redefine myself and not complete my Ph.D. was incredibly burdensome to me,” she said. “That was the hardest part.”

She had a stem-cell transplant in Boston, which sustained her for two years until more symptoms emerged.

She was feeling better in 2018 and had tremendous support from her family, but knew she needed somebody who could understand her journey. When Wallace found her on an online support group, McAfee asked if they could meet in person to talk.

They decided to form their own local group, the Adirondack Multiple Myeloma Support Group, which meets from 2 to 4 p.m. the first Friday of the month at Rocksport in Queensbury. The group is meeting virtually because of the coronavirus pandemic.

“I really was a wreck,” Wallace said. “When everything happened, I pretty much went into survival mode.”

Both women were so focused on getting their transplants that neither was prepared for post-transplant life — 100 days of isolation followed by living with cancer and fighting more battles as they arise.

“It’s a roller coaster,” Wallace said. “There’s so many ups and downs. And we’re on treatment all the time because there is no cure.”

It’s a complicated mental game, McAfee said.

“So having that support group seemed to be a way to capture some of this mental game, be with other people who can understand, share the experience, support each other, educate each other,” she said. “I think it’s been a lifeline for a lot of us.”

There are about eight people in the support group, although a couple of members died from the disease in 2020.

“I don’t feel like there’s any kind of class or lesson that prepares you to deal with that part,” Wallace said.

The COVID-19 pandemic has forced the cancer patients — who are already familiar with hand sanitizer and social distancing — to live an even more isolated existence.

Wallace came down with the virus just before Christmas.

She spent Christmas Day and the following two days in the hospital. The virus had a ripple effect, and she is now facing low blood counts and a series of more tests.

“The thing about this disease, I always say, is it can erect its ugly head at any time,” McAfee said. “And it doesn’t matter what your past record has been. People may go into remission for a period of like five years, and for no reason it will re-present itself.”

Both Wallace and McAfee praised the support they’ve gotten from Rocksport. They hosted a blood drive at the rock-climbing facility a year ago, the same week the state shut down. Rocksport has provided space for their meetings free of charge.

They also praised the oncologists at the C.R. Wood Cancer Center at Glens Falls Hospital.

“They’re world-class,” McAfee said. “They could go anywhere, but they choose to live and contribute to our community.”

Both women encourage people to listen to their bodies and make their doctors hear their concerns.

More information can be found at the International Myeloma Foundation or the Multiple Myeloma Research Foundation. Anyone interested in joining the support group can email adirondack@imfsupport.org.

“When the days are good, you pinch yourself and remember,” McAfee said. “You go hard when you can, when you feel good, because you know around the corner there’s a day that’s not going to go well. It is a roller coaster.”

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