GEORGETOWN — At first it's jarring when Anne Leader jokes about her ever shifting "expiration date."
In the current pink-infused culture, proper women with breast cancer "fight like a girl," and the singular focus is on beating the disease at all costs.
But Leader won't. She can't.
In 2009, Leader was diagnosed with Stage IV metastatic breast cancer. In the years since, through time, collaboration with a compassionate doctor and a passion for art and living, Leader has come to terms with dying.
"I think about death a lot, not necessarily in a bad way," said Leader, sitting next to a glass vase filled with zinnias in the sun-dappled kitchen of her 100-year-old house.
"Death is walking beside me," she said matter-of-factly. "It makes you respect life a little bit more. It makes you more pensive. It makes petty arguments seem foolish."
And so, Leader is continually adjusting to a life forever altered but not diminished.
Art — working with clay, specifically — has been the thing that's helped keep Leader tethered to the here and now. When she was too sick to hold up a book, she'd massage a fistful of clay into little bear/dinosaur/anteater creature that provided both distraction from her pain and psychic companionship.
An active member in Scott County's close-knit arts community, she put together a show of her work in 2011. That show, 36 Stratagems: The Complexity of Surviving Troubling Times, was a collaboration with her friend Carol Freid.
Preparing for the show saved her life, Leader said. It gave her a focus and an outlet.
"Without art," she said, "I don't know what I would have done to survive."
Art is at every turn in Leader's cancer story — whether it's attending a workshop on porcelain, being inspired by a painting, creating a photograph or giving in to any number of friends who came to pull her out of the house to focus on something creative and beautiful.
Her journey started with an ugly rash.
The teacher/potter kept thinking she needed to go to the doctor, but she was in the middle of doing a multi-step clay project with special education students at Scott County's Royal Spring Middle School and didn't want to take the time. She convinced herself the pain in her shoulder was just bursitis. She told herself she was just being goofy.
But somehow, in the back of her mind, she knew it was cancer, and she put off knowing for sure. When she finally called the Markey Cancer Center at the University of Kentucky, she got cut off talking to the operator.
That might have been that. But the operator called her back.
She'd soon find out she not only had cancer, she had a life-threatening blood clot. That call back may have made possible everything that came after.
This isn't one of those Hallmark channel stories where the heroine gets bad news and immediately resolves in the space of a breath that life, damn it, is worth living, and the violins cue a montage of heart-affirming moments.
No, the news of her cancer was heartbreaking. It shook her. Knocked her back. She worried how it would shake the ones she loved.
"I was just plain scared," she said.
Then, she said, "for a month I was madder than a snake."
Dr. Suleiman Massarweh, an Markey oncologist, was the one to tell Leader her cancer had no cure.
In cases such as Leader's, he said, it's best to be straightforward so the patient can make an informed decision about treatment. Leader, endlessly curious about most things, wanted to know only the basics about her disease.
"I don't know why," she said, "I knew it was very serious. I didn't want to be spooked. Everything was so grim."
There was at first chemotherapy. Leader refers to going to the hospital to get a toxic cocktail as going to the "chemo spa."
"I felt so sick and it made me feel better. I got such support from the nurses there. I'd snooze and lie down," she said. "There were hot blankets," she adds with nostalgic enthusiasm.
When Massarweh stopped chemo because it started to affect Leader's heart, "I was ready to cry," she said.
The treatment plan shifted to an oral medication that targets Leader's specific kind of cancer. Massarweh describes traditional chemotherapy as being a carpet bomb that destroys the target and all life around it. With a targeted therapy, the chemical makeup of the medicine attacks the molecular makeup of the specific type of cancer. In Leader's case, it has kept the cancer from growing.
But the process still introduces poison into your body, and there are side effects. Leader and Massarweh have refined a dosage pattern that allows her enough of a respite from the side effects to live her life.
But it took time, and while the adjustments were being made there were days when the treatment felled Leader to the point where she could barely move. The side effects of the drugs created muscle aches and stiffness so severe that even getting in bed was an undertaking. Leader pantomimes the feat of managing to get under the covers in a way that resembles a flailing Frankenstein trapped in a fishing net.
Getting into a fully upright standing position was a slow, multi-phased effort that looked like the representation of the evolution of man.
Leader, who in spite of her health looks a decade younger than her age of 65, was considering a move into some kind of assisted living.
Even now, she said, she constantly feels "like there is a tight band around my chest, like it is a bra that is way too tight."
But she finds a way.
Leader speaks glowingly of Massarweh and of their rapport. While she knows it is not an approach that would work for everyone, she appreciates that she could ask him jokingly about her "expiration date" and he'd tell her to not make plans for more than three months out. She was OK with that.
"I try hard to be positive, and if you can't find a way to be positive it is going to be really hard going," she said.
Massarweh said no two patients are alike, but for every patient, getting the news of an incurable form of cancer is like hitting a wall. You can't go through it, he said. You can keep making a full run at it, shoulders down, but you'll just keep getting knocked back. You've got to find away around, he said.
"It is a very complicated thing — you have to make adjustment to your life, you have to prioritize, you have to view things from a different perspective," he said.
As for Leader, he said, "She has run her life and put this (cancer) in the background while it is being managed."
"This is the definition of quality of life."
He praised Leader for her efforts and urged other cancer patients to be active in decisions about their care. He is a firm believer in getting a second opinion and talking through all the options.
In the end, he said, the treatment shouldn't be worse than the disease.
He also wishes that there were more room in the breast cancer world for people like Leader who are never going to "win." Patients with metastatic breast cancer can feel isolated even among others with cancer because, technically, they aren't going to survive.
The word "cure," he points out, is almost never used in a clinical setting.
Leader, for her part, continues to make adjustments. She has for years taught art classes and worked as a substitute teacher in Scott County. She's stopped doing that.
As much joy as it brings her, it is taxing, and she only has so much energy.
Also, she has adjusted her art. Working as a potter is a physical effort from beginning to end — from the force and focus needed to wrestle a lump of clay on the rapidly spinning wheel into an elegant shape to loading and unloading the kiln.
She spent hours on a recent Saturday firing raku pottery as part of a community celebration at Georgetown's Japanese garden, Yuko-En on the Elkhorn. It's a quick-fire process that involves lifting and bending and extreme heat. She had to negotiate with her body in the days before and after to find the strength to get through the task.
She knows there will be a time she can't do it at all. She's preparing for that by pushing beyond her beloved clay into creating more photography and writing.
But there will always be art of some kind. It will be her legacy. It will linger when she is gone.