On a recent February afternoon, 37-year-old Ayanna Kalasunas lounged with her husband, Mike, in the clear warm water of the Caribbean. She had a margarita in hand, and looked up at the lush rain forest of Puerto Rico, and the blue sky above it. A day later, back home in winter in South Philadelphia in the US, she’s replaying the memory. “I was with my husband, who I love, and I thought, if I don’t find joy in that….” She shrugs, a broad smile on her face.
For the last four years, Ayanna has been focusing on finding the moments of joy in her life, and feasting on them. It was in late December of 2012, just before taking off with her then-fiancé for a weekend getaway, that she went to the hospital to check a lump in her breast. The woman giving her the ultrasound looked up at her with wide eyes, and Ayanna remembers thinking: “I didn’t come in here for that. We had plans.”
Things get bad and scary and frustrating sometimes. You have to accept what’s beyond your control.
She knew all too well about breast cancer. Her mother had experienced breast cancer in her forties, which came back after a decade of remission and was metastatic, meaning that it had spread to other organs. Ayanna remembers delivering the news of her own disease to her mother. “That was the hardest call to make,” she says.
A week later, in early January, Ayanna’s mother was with her when they learned that she, too, had metastatic breast cancer, or MBC. The disease had invaded her liver. For Ayanna, like the 250,000 women around the world every year who learn they have MBC, the diagnosis was the beginning of a journey. She wouldn’t wish it on anyone, she says. It brought her crippling bone pain, traumatic surgery, the nausea of chemotherapy, and a steady drip of anxiety. She lost her mother to the disease, in 2015. “Things get bad and scary and frustrating sometimes,” she says. “You have to accept what’s beyond your control.”
Through it all, though, Ayanna has managed to savor the triumphs that most 30-somethings can take for granted: the days without pain, dinners with her husband, strolls through her South Philadelphia neighborhood with her energetic rescue dog, Bailey. One of her early successes involved getting the right mix of medications to be able to walk down the aisle in her wedding dress, and to fly off afterward for a honeymoon in Mexico.
Living with MBC, she says, has shifted her thinking about all kinds of things. She has a fresh perspective, for example, on what constitutes a bad day. Compared to her medical concerns, the run-of-the-mill headaches, whether it’s Philadelphia ice storms, battling with insurance companies over co-payments for medical treatment, or “bickering with Mike over something stupid,” seem meaningless in comparison. “It’s super easy to get over stuff like that,” she says.
What’s more, compared to even a decade ago, the life for many MBC patients has improved a lot, says Dr. Adam M. Brufsky, co-director of the Comprehensive Breast Cancer Center at University of Pittsburgh Medical Center. Back then, patients all faced similar treatment regimens and the same bleak prognosis. These days, he says, doctors can distinguish different types of MBC. “The goal,” he says, “is to turn it into a chronic condition that we can manage.” Some of his patients, he says, have survived for 10 and even 15 years.
Still, the general outlook for MBC patients remains grim. Only about 22% of them survive five years. In an ongoing effort to further improve their chances, drug researchers continue to develop new treatments aimed at more effectively battling the disease.
Having hope inspires Ayanna to face each day living with metastatic breast cancer.
Ayanna has no interest in consulting actuarial statistics. Her goal is to enjoy the good times when they come, and to have as many of them as she can. For the first couple of years with cancer, she clung to the life she’d forged, including her career. She had worked her way up at clothing retailer Urban Outfitters, from sales associate to store manager and, finally, a manager of e-commerce at corporate headquarters. Last year, she retired, to focus on breast cancer advocacy. She’s now on the board of a leading advocacy group in the United States, Living Beyond Breast Cancer (LBBC).
Sitting in the living room of their Philadelphia home, Ayanna and Mike talk about the challenges of discussing the disease with neighbors and co-workers. People offer advice, often with the best intentions, recommending miracle diets or remedies they read about. “Sometimes I feel like telling them, ‘why don’t you just bring me the 800 pounds of kale I’m supposed to eat,” Ayanna says, laughing.
Mike, a construction supervisor, often encounters workers who insist, cheerfully, that he and Ayanna will have babies. He says no, and when they keep it up, suggesting fertility therapies and adoption, he sometimes has to interrupt them and end the discussion by saying, “My wife has cancer.”
The person who understands them best, they say, is Ayanna’s oncologist at Pennsylvania Hospital, Dr. David Mintzer. From the very beginning, he told her to shop around for an oncologist she felt comfortable with. After all, for MBC patients, the oncologist serves not just as a doctor, but also as a lifelong guide into a new and often frightening world. Dr. Mintzer gave her names and told her to get a second opinion. She came back to him.
Dr. Mintzer has a straightforward style that she and her husband appreciate. They usually meet him after the most agonizing days, while they’re waiting for Ayanna’s scan results to come in. “We’re jumping out of our skin,” Mike says. If the results are not great, the doctor doesn’t hesitate to tell them so. But he then promptly turns toward the most promising path. “Here’s what I think we should do,” he says.
This process, with all of its bumps and bruises, is oriented toward giving patients like Ayanna more time, and the best possible quality of life. Ayanna and Mike are already planning their next vacation.