Lynn Baker's treatment for breast cancer often runs behind schedule because the petite 70-year-old with a rainbow of turbans to swaddle her bald head likes to chat with the nurses and techs. She visits with the snack bar workers, greets new patients and chats up the shuttle drivers.
Watching in the lobby of the Markey Cancer Center at University of Kentucky HealthCare as her mom finishes yet another impromptu conversation, Joetta Queen-Everette laughs and says Baker has "never met a stranger."
Her frequent, and favorite, topic? Inflammatory breast cancer — a rare form of the disease that often is misdiagnosed because it doesn't begin with a lump.
Four years into her own struggle with the disease, Baker is on a mission. If she always had the strength that carries her through her very best days, Baker said, she'd go on a one-woman speaking tour to let people know that all breast cancer is not the same.
"I'd talk to anybody who wanted to listen," said Baker, who keeps her pain at bay with a morphine pump she carries in a worn gray bag.
Inflammatory breast cancer makes up about 5 percent of all breast cancer, said Dr. Suleiman Massarweh, who is treating Baker. "The cancer is in the skin itself," he explained. Because there is no mass or lump, there is nothing to show up on a mammogram. "It's kind of a liquid tumor," he said.
Often, front-line doctors are unfamiliar with this form of the disease because it is so rare, he said. Even as a breast oncologist at Markey, Massarweh sees only about 10 cases a year. Many patients come to Markey months after the initial symptoms first appeared, he said.
Sadly, "they end up coming here when they have no other choice," he said. Often doctors treat the inflamed breast for infection. One of Massarweh's patients spent six months on antibiotics before coming to the cancer center. That is risky, he said. Inflammatory breast cancer can spread to other parts of the body, making it more difficult to treat successfully.
"It is very rapidly growing and very aggressive," he said.
Baker wasn't sure what she was dealing with when she first noticed a persistent "reddish, blueish, purpleish splotchy patch" on her breast in 2008. She had other tell-tale signs of inflammatory breast cancer: Her skin was hot to the touch and itchy, and she had stretch marks that look raised and white.
Baker, who worked in computer programming for more than 50 years, set out to find an explanation for her problem. Searching the Web, she found that no matter how she parsed her query, the answer was the same: "inflammatory breast cancer." She'd never heard of it.
"Who checks for that kind of thing, seriously?" she asked.
Her family doctor was receptive to her suggestion of a diagnosis, although she did have to push for a timely appointment. That physician sent her to an oncologist. But, she said, like many patients, she ran into trouble while getting care. The first treatment suggested by an oncologist near her home in Cleveland, Tenn., wasn't effective, and after several months, she was in considerable pain and an inflamed patch on her back kept her from sleeping lying down.
"After a while, he told me that I just needed to learn to deal with it," said Baker, her steely look as she told the story making it clear that this did not sit well. "Thank goodness, I didn't just decide to say, 'OK.'"
After searching for a doctor who had experience treating inflammatory breast cancer, Baker came to Markey. She now travels from Tennessee three times a month for treatment. At her side is her daughter, whom she affectionately calls her "personal assistant."
The treatment has been difficult. Baker is on her 11th round of chemotherapy. The first 10 were not effective, Queen-Everette said. Baker has lost and grown back her hair four times.
"It's just hair," Baker said. "It's not my life."
Baker is passionate about women taking charge of their treatment. If someone is in a car wreck, she said, the first thing they do is reach for a cellphone to call for help. Why don't the same principles apply when dealing with a disease?
"Why don't they call a doctor?" she said while waiting recently to get another round of chemo. "I just don't understand."
Massarweh said if a woman experiences the signs of inflammatory breast cancer and is treated with antibiotics for infection, she shouldn't wait more than a couple of weeks to see whether she has cancer. If there is a diagnosis, he said, she should seek a second opinion.
Often, women put off seeking a diagnosis because they are afraid of the side effects of chemo, thinking the cure might be worse than the disease, Massarweh said.
But Baker told a new patient registering for her first chemo treatment at Markey, "Chemo is not so bad; you can get through it."
Baker's mother, who died just weeks ago, lived into her 90s. She had an aunt who lived to 108. She plans to uphold the family tradition of longevity.
"We women of Kentucky," she said, "we are strong. We can do better."