October 19, 1999|By Diana K. Sugg | Diana K. Sugg,SUN STAFF
Such cancers couldn't even be studied well until 10 or 15 years ago, when imaging techniques such as MRIs were developed. Since then, advances mostly have been confined to new imaging technology that guides surgeons during operations and precisely focuses radiation in the brain, allowing for higher doses.
"People 20, 30 years ago, without the benefit of new technology or imaging, were doing nearly as well as we are now," said Dr. Donald M. O'Rourke, an assistant professor of neurosurgery and pathology at the University of Pennsylvania Medical Center.
A surgeon, he spends much of his time in the lab now, working on defining the molecular mechanisms of brain tumors. "Surgery will always be palliative for this disease," O'Rourke said.
Patients realize that the standard treatments only buy them time. On some days, Perone sees the sugar maples she planted in front of her house and bursts out crying.
"They're going to be real big someday," she muses.
She and Jim Perone had meant to retire in this cozy house on the corner. They had planned to sit in the covered wooden swing in the back yard and watch their grandchildren play on the grass. Many days, though, she fights off those feelings.
"If I make myself crazy about controlling life," she said, "then I ruin the life I have left."
It could be worse
She knows she's escaped the worst. She has friends in a support group who have lost their memories, their sense of who they are. Sometimes, their personalities are changed.
Brain tumor patients can quickly lose the ability to walk and talk, and they may find themselves stigmatized by those who assume they've lost cognitive abilities. Humiliated, many will hide the diagnosis as long as possible.
Perone mows her lawn, walks her dogs, scours the Internet for the latest cancer news. But in the past few months, she finds herself struggling with glitches in speech and memory.
She says power surge instead of storm surge. She walks into the kitchen many times a day and doesn't remember why. Just having a conversation with someone is taxing.
Any of these symptoms might mean the tumor is growing back. But the brain surgery and radiation have created trauma in her head that can reverberate for months, and her body is being depleted of copper. Nobody knows what that can do.
One July night, Perone felt a stabbing pain in her left side. She couldn't move without screaming. At the emergency room, morphine did nothing. For five days, the stabbing sensation continued, landing her in the hospital again.
"I don't think I've ever been in that much pain before," she said to Grossman at an appointment a few weeks later. "I'd rather have more brain tumors removed."
She wanted to know whether the non-copper diet caused the pain.
Peering intently at her, in a gentle voice, Grossman told her, "I have to be honest with you. When you're the first one down the pipeline, we don't know."
In one week, she will have her next MRI.
Once again, she will joke with the technician about the brunet wig she finally got because too many people stared at the scarred and naked side of her head.
And she will climb on the long, skinny platform in the chilly room, where they'll pull a plastic helmet device over her head.
Then, as she lies still as a corpse, her body will slide into the huge white machine.
Inside, as the buzzing and hammering noises start, she will whisper, "God, God, God. Jesus, Jesus, Jesus," and she will dream that she is safe.
Resources
The University of Maryland Medical Center's Brain Tumor Support Group: 410-328-8875
The American Brain Tumor Association: 1-800-886-2282, or www.abta.org
The Brain Tumor Society: 1-800-770-8287, or www.tbts.org
National Cancer Institute: 1-800-4-CANCER, or cancertrials.nci.nih.gov
