A bulletin board hangs at the entrance to the infusion suite at the Huntsman Cancer Institute (HCI) clinic at the Farmington Health Center. Pictures fill the board of people smiling into the camera and ringing a bell—an HCI tradition when a patient finishes chemotherapy.
Lisa Lyon remembers when the clinic was new and the bulletin board was empty. Every three weeks since then, she returns for treatment and sees the photos accumulate. And though she lives day to day without signs of cancer, Lisa knows she cannot ring in victory. "My cancer is expected to come back," she says. Lisa was diagnosed with a rare form of metastatic breast cancer almost five years ago. "When you get diagnosed with a terminal cancer, you have to decide how you’re going to live with a disease. It doesn’t have to stop you from doing things, but you do have to choose how to live."
Lisa, a self-described California girl, moved to Utah for college. Her twenties were full of the life she’d longed for, complete with challenges: marriage, children, working as her husband completed graduate school, and moving a handful of times within the Salt Lake City area.
"We were thinking our twenties were hard," Lisa says. "We thought our thirties would be different." Lisa was 28 with three children: a five-year-old, a two-year-old, and a newborn. "We had just a few months of feeling like everything was perfect in the world," she recalls. "And then I was diagnosed."
Lisa has inflammatory breast cancer, which she first noticed as a rash while breastfeeding. After a few misdiagnoses and advocating for her own health, she saw a dermatologist, who took a biopsy. When it came back as cancer, she was referred to HCI. "I got a test on a Monday. I went to HCI on a Thursday," Lisa remembers. They soon learned the cancer had spread to her lymph nodes, skin, and liver. She was diagnosed with stage IV. "The next day—literally the next day—I had my first chemo. Everything was sped up. And I’m so grateful for it."
The year that followed was a blur, Lisa says. Chemotherapy, surgery, radiation. Her oldest started kindergarten. But somehow, she prepared for the unknown. "I had to learn to be present in the moment. But I also had to think ahead to prepare my children, my husband, my family, my friends—everybody—for what happens if I’m gone. We were ready in case I got worse."
But Lisa took to the treatments well. The rash, which was breast cancer that had spread to the skin, started to disappear. The tumors in her liver not only shrank but seemed to disappear—so much so that her surgeon decided not to operate on her liver.
And yet. Lisa was—is—still not in the clear. Like many of the women with terminal cancer she has met, will never be in a position to ring the bell. Many, she explains, think of themselves not as survivors but as thrivers.
"There are these two lives I’m living," Lisa reflects. "One is: ‘I’m here. Let’s plan a trip, I’m going to help you with chores and volunteer at your classroom.’ And then there’s this part of me that thinks ahead and gets gifts I can put aside for my kids. This part that knows I need to be intentional about establishing traditions they can carry on."
Lisa says this is part of being a thriver. "It’s like everything’s fine and everything’s not fine," she explains. "You have to look for those little moments. You can’t wait for everything to be perfect because it won’t ever be perfect."
This fall, Lisa’s youngest daughter—the infant she was breastfeeding when she first noticed a rash—will start kindergarten. And Lisa will return again to the clinic every three weeks, ever grateful for no recurrence, ever wondering when the cancer will return.
"I’m grateful for medicine. I’m grateful for the researchers and doctors at HCI. I was young and healthy and didn’t know anything about cancer and I got a horrible diagnosis. I walked into HCI and it felt like the whole building was for me—to help me."
Sometime after Christmas 2019, the staff at the HCI Farmington clinic hung Lisa’s Christmas card on their bulletin board. The smiling faces of Lisa and her family greet her every time she walks past the bell. "I can’t tell you how much that meant to me," Lisa says. "I’m part of the tradition, but in a different way."
