John’s Story: Glioblastoma

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John, a retired painter and carpenter, is a tall, solidly built man with a strong inclination toward getting things done. A former Vista volunteer who was equally comfortable running a food co-op in an underserved neighborhood or standing near the top of a tall ladder, he is a natural at lending a hand to people who can’t quite make it on their own. Combine that industrious and generous spirit with a wry sense of humor, and you have a man who tends not to brood about circumstances he can’t control.

As such, John spends his days focused on life. A long-term survivor of an aggressive brain cancer known as glioblastoma multiforme, he has made the decision to enjoy living rather than worry about dying.

“I’ve never sat back and wondered why I got the tumor,” John says. “I’ve always accepted it and I’ve never allowed myself to be depressed about it. I just go on living the way I want to live.”

John tells a remarkable and unusual story. He has survived almost 20 years following a diagnosis of glioblastoma, or GBM, a type of brain cancer that is typically fatal within one to two years. His father succumbed to the same type of tumor in only six months, while John himself was given only three to six months to live.

Of patients diagnosed with gliobastoma, about 3 to 5 percent will beat the tumor and survive long-term, says Dr. Ronald Warnick, Medical Director of the UC Brain Tumor Center and the John M. Tew, Jr., MD, Chair of Neurosurgical Oncology. “These glioblastoma survivors usually are young people who have had a radical resection (removal) of tumor and have undergone other aggressive therapies.”

Dr. Warnick is one of several physicians who have provided John with excellent, multi-faceted care. This care, combined with good fortune, has kept John smiling and enjoying life with his wife, Connie, and their son, Jonathan, both of whom share his zest and humor, and his four high-energy dogs, a Siberian husky, a chocolate Labrador mix, an Akita and a Siberian husky-German shepherd mix.

“It’s still a terminal illness,” Connie says. “John is very fortunate. He’s one of the odd ones. He says, ‘I’m going to die from a tumor, but I’m not going to live like that.’ His philosophy is that you accept the fact that this will eventually kill you and then you get up and live your life.”

Unlike most people who learn that they have a terminal illness, John did not pass slowly through phases of shock, depression, anger, mourning and acceptance. “He went from zero to 10 in a nanosecond,” Connie says.

John underwent surgery following his diagnosis in January 1995 at the former Bethesda Oak Hospital in Cincinnati. He was 46. Active all his life, he told his surgeon that if removing the tumor would impair his ability to move or speak, he wanted the tumor left alone. The surgeon labored over the tumor, which was embedded in the right frontal lobe. When John awakened after the operation, the physician was standing at the end of the bed, in tears. “He said it was the bloodiest tumor he had ever seen,” Connie recalls. “He thought he had been able to remove only about half of it.”

But the surgeon was more successful than he realized. An MRI taken a month later showed that he had succeeded in eliminating 90 percent of the tumor. The surgeon then referred John to Dr. Warnick and Dr. John Breneman, a radiation oncologist at the UC Brain Tumor Center, for radiation treatment.

John qualified for a clinical trial in which the remains of his tumor would be eradicated with beams of radiation He also underwent chemotherapy with a BCNU-infused IV drip, whose lime-green color still makes him wince.

John recovered, and over the years his annual MRIs were unchanged. Then, seven years after the initial treatment, Dr. Warnick saw some subtle changes on John’s scan. Unable to tell whether he was seeing necrosis (scar tissue) or a recurrence of the tumor, Dr. Warnick scheduled John for a craniotomy; he would open John’s skull and find out what was going on.

Prior to the surgery, John told Dr. Warnick about a magazine article he had read about humor. “The article was about different types of humor and where in the brain humor comes from,” he recalls. “I said to Dr. Warnick, “Please don’t take away my sense of humor. I want the humor part left in. I want to go out smiling when I die. That’s what my father did, even though he couldn’t talk.”

The spot on the scan turned out to be necrosis, and John awoke with all of his faculties, humor included, intact.

“They told me there was no tumor,” he says, adding, “although they have never said I was cancer-free.”

John has come to view his right frontal lobe as some kind of extraneous cranial real estate.  “I’m pretty sure that I never used that part of my brain,” he says. “I haven’t missed anything.”

John did lose one skill for a short period after his first surgery – the ability to keep a running score during games of ping-pong with his son. “I could add and subtract, but I couldn’t keep track of a running score,” he says. “This was a problem, because I couldn’t tell whether my son was cheating or not.”

After his second craniotomy, John decided that he should do cross-word puzzles every day to help keep his brain sharp.  He reads, watches videos from the library, walks his dogs, and keeps an eye on his neighborhood, lending a helping hand when asked.

*   *   *

Hope Story Disclaimer – This story describes an individual patient’s experience. Because every person is unique, individual patients may respond to treatment in different ways. Outcomes are influenced by many factors and may vary from patient to patient.

 

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