After I wrote about Steve Jobs's death last week I got a tweet from a woman named Tracy Krulik: “@jhuget Read ur piece on pancreatic cancer. W islet cell cancer u can live a full & long life. I’ve never been healthier since my diagnosis.”
I contacted Krulik, who lives in Old Town Alexandria and blogs about her journey with cancer, to learn more about her experience with the disease -- also known as pancreatic neuroendocrine tumor -- that led to Jobs's death.
Krulik, 40, says she was diagnosed with her cancer in 2007 after many years of pain and illness for which multiple tests and scans had failed to pin down a cause. By the time it was determined she had a tumor on her pancreas, the cancer had spread -- metastasized -- to her liver and chest.
“I was sick for nine years at least, really, really sick,” Krulik told me. “When they finally diagnosed me, part of me was just glad to learn I wasn’t a hypochondriac.”
Krulik says her surgeon “looked at [the tumor] and said ‘I’m going to make you feel better.” And it worked: Once the golf-ball-sized tumor on her pancreas was removed, she began feeling better than she had in years. But a month after the surgery, she says, she learned the cancer had metastasized. She believes that had her tumor been detected and removed before the cancer had a chance to spread, she’d be cancer-free today. As it stands, the “mets” on her liver and in her chest have grown smaller, and doctors say her prospects are good. “Something was causing my cancer to grow before, and now it isn’t,” says Krulik, who these days maintains a vegetarian diet and gets plenty of physical activity.
“I feel healthier and stronger than ever,” says Krulik, whose blog is called “I have cancer. And I’ve never felt better.”
“If I feel that strong,” she says, “who cares if I have tumors in my liver and chest?”
Steven Libutti, director of the Montefiore-Einstein Center for Cancer Care in the Bronx, New York, says Krulik’s experience is far from unusual among patients diagnosed with what he calls “the other pancreatic cancer.” Unlike the much more common adenocarcinoma form of pancreatic cancer, the kind Krulik and Jobs were diagnosed with “is so slow growing and small in volume that people can live for 10 or more years with the diagnosis,” Libutti says.
“The first thing I have to do when I tell patients what they have is to explain that it isn’t the ‘pancreatic cancer’ they’ve heard about,” Libutti says.
So, why is Krulik still here and Jobs, diagnosed in 2004, is not? Libutti speculates that Jobs had a “more aggressive form” of this cancer but adds that the Apple founder lived for seven years after his first operation, having undergone other treatments including a liver transplant along the way. And, as Krulik points out, “Who the heck knew how long he had [cancer] before he was diagnosed?”
Krulik says the most important lesson from her experience is the need to “be an advocate for yourself and your loved ones. I talk a lot about the responsibility to take care of ourselves. But I don’t take it to extremes,” preferring to work in partnership with physicians in attending to her health.
Despite the long wait she endured before doctors figured out what was wrong with her, Krulik says, “I still believe in Western medicine. I wouldn’t feel as good as I do if a surgeon hadn’t removed that tumor.”