Living With Dying The power of a terminal diagnosis
The five-inch scar on his scalp is unobscured by hair or hat, a battle scar he never expected signaling a vulnerability that has opened John Shippee’s heart.
A malignant tumor the size of a small orange was removed from his brain in October 2006, and any remaining traces were blasted by chemotherapy and radiation.
“My particular cancer has a pretty uncompromising terminal prognosis,” he says. “But that doesn’t mean I can’t live fully. It’s one of the paradoxes of my illness: I know I have a disease—there are subtle reminders all the time. But I don’t feel at all like I’m dying.”
Shippee, a consultant for nonprofit agencies who studied graduate-level theology at Emory, knows that the tumor could come back at any time. He quotes the statistics: most people with stage four glioblastoma can expect to die within a year of diagnosis; just a quarter live for two years. Shippee was diagnosed late last year at age sixty-two.
The first symptoms occurred just after he returned from Baden, Switzerland, with his mother, who is in her eighties, where they had celebrated their cousin’s hundredth birthday. The irony is not lost on Shippee. “We’re a long-lived family,” he says wryly.
After returning home to Atlanta, Shippee, a methodical man who takes pride in his attention to detail, immersed himself in preparing a grant proposal. He sent it to colleagues rife with spelling and grammatical errors. “I just don’t make those kinds of mistakes,” he said. “It mystified all of us.”
One evening at dinner, he carefully ate half of what was on his plate—he couldn’t see the other half of his food. His optometrist performed a vision test, and found that his right peripheral vision was gone. When he walked out of her office into the parking lot, Shippee realized he had no idea where he had parked. None. He walked up and down each row until he recognized his 2003 silver Subaru Forester.
He was sent to specialists. By this point, he was having difficulty walking, couldn’t sign his name, and couldn’t remember his mother’s phone number.
The tumor, six centimeters by five centimeters, was “like a bulbous Chinese radish with long, leafy tendrils,” says Shippee. It was in the left occipital lobe of his brain, sapping away skills and knowledge as it grew.
Shippee had immediate support from his wife, Margaret Blevins 87T, a hospice chaplain who worked at Emory for nearly thirty years (see page 28), and his stepson, Stephen Blevins Thomas 91C. They rallied around him as he developed a plan. “It came down to, what was I going to do with my time? Whether I have two seconds or twenty years—neither is likely, but neither is impossible either—how was I going to respond to this news?”
First, he took a Commedia dell’arte mask he had purchased in Italy to hang over his IV pole in the hospital “to show that I was more than an anonymous brain tumor in an equally anonymous—and embarrassing—hospital gown,” and to get a smile from the doctors and nurses. Truth be told, the mask was a bit of a rebellious act.
“Throughout my life, I’ve been a social activist. I continue to maintain these concerns despite the fact that I might be dying. I’m not just John the cancer patient or John the survivor,” he says. “I’m the sum of all my previous life experiences.”
Shippee wanted to bring these experiences to bear in a meaningful way, so he began speaking—at Emory, at his church, in his community—about what it is like to have a terminal illness and to be treated solely as “a patient, which automatically makes you the least respected and most objectified person in the medical hierarchy.”
He spoke at an Emory conference about improving the dying process. He began writing a book with the help of Assistant Clinical Professor Gary Gunderson and his daughter, playwright Lauren Gunderson 04C. He started videotaping his thoughts for future generations. He spoke with medical students as a guest lecturer. And he had conversations with others who were inhabiting this strange new borderland of living in direct confrontation with dying.
On NPR’s “My Cancer” blog, hosted by journalist Leroy Sievers, Shippee submitted an entry that reads:
“Since October my identity has been unconditionally tied up with my cancer and my status as one whose diagnosis is probably terminal. In some ways, this has been an advantage. I have been listened to as never before and had deeper conversations with friends and colleagues than I have ever had. . . . I have begun to have a bit of success in getting the medical and other caregiving communities to listen to our voices and at least start to respond in like manner, rather than as distanced professionals.”
Most of the time, Shippee deals with his illness in a logical, analytical fashion. “I’m kind of emotionally challenged. I’ve not cried yet,” he says. “The only time I came close was when I was watching my grandnephews play, and thinking that I might never again see them or my grandchildren.”
He does, however, feel a certain urgency about the time he has left.
“I’m graced with having this period of my life in which to make sense of it all,” he says, “To mend and strengthen my relationships. To affirm others. To tell my story. I am living my life fully, integrating my impending death rather than allowing it to dominate.”—M.J.L.”