Patient moves on despite brain tumor: ‘It doesn’t define me’

by Symptom Advice on February 14, 2011

Appointments were made to see the doctor, but he lacked the energy to go.

Finally, he “dragged out of the house” to see a doctor.

The physician who saw Michael, then 17 years old, said the teenager was depressed, according to the family.

Three months later, Michael visited an emergency room. Neely remembers the date: Aug. 7, 2008.

Emergency surgery was performed that day. Another operation followed Aug. 18 for the benign tumor on his brain stem, the part of the brain that controls basic life functions.

Neely spent weeks in a coma.

“We didn’t know if he was going to live or die,” said his mother, Dena.

His 18th birthday was celebrated in the intensive care unit.

Near the end of that September, Michael went to a facility for rehabilitation. He was there five weeks for a “crash course in how to walk, talk, eat” and other actions.

He left rehabilitation in a wheelchair. Today he walks with a cane.

“I’m ridiculously mentally tough because I have to be. That’s the only way I’ll stay alive,” he said.

While Dena has continuously searched for answers, Michael is uninterested in understanding his brain tumor.

“Ignorance really would be bliss,” he later wrote in an e-mail.

His passion is reading. He enjoys the satire of mark Twain and “darkly hilarious” Stephen King. He wants to be a professor and teach American literature.

He loves music. David Bowie and Morrissey are some favorites. his favorite TV show is “Lost.” He spends a lot of time online.

Neely is candid and honest about his fears and loneliness. He knows no one else his own age with a brain tumor. Adding to the isolation is the recent loss of a dear friend to cancer.

Dena said the nearest support groups for people with brain tumors are in Asheville, N.C., and Charleston.

The greatest change Dena has seen in her son is the anger. How does one rid him of that bitterness?

Dena considers Michael, now 20, a “miracle.” she said he’s fortunate to be able to walk and no longer need a feeding tube.

The American Brain Tumor Association projected 62,930 new cases of primary brain tumors would be diagnosed in 2010.

Primary brain tumors begin in the brain. Metastatic brain tumors are cancer cells that originated elsewhere in the body, perhaps the lungs, breast or skin, and traveled to the brain.

Brain tumors can be benign or malignant and are measured on a scale from 1 to 4. the higher the number, the more aggressive.

Rare and hard to figure

Brain tumors are seen more often in children and senior citizens.

Dr. Sharmila Mehta, with Palmetto Hematology Oncology, said brain tumors account for 2 percent of all cancer types.

In 2008, there were 1,600 new cancer cases diagnosed or treated at Spartanburg Regional. there were 33 brain and other nervous system cases.

Mehta said brain tumor symptoms can often be nonspecific.

They might initially be overlooked or appear as something else, such as depression or fatigue.

When should people be concerned? As opposed to a migraine, Mehta said headaches associated with brain tumors typically are dull and consistent, and they can be severe enough to wake someone.

Changes in brain pressure can worsen the headaches or cause nausea and vomiting.

“Typically the nausea and vomiting is worse when you change the pressure in your brain, and usually that’s done by changing position — bending down, crouching, stooping, sneezing, coughing, having a bowel movement,” Mehta said.

Other symptoms can include weakness, seizures, difficulty with communication, mood swings, memory loss or passing out.

Each part of the brain is responsible for specific functions. the location of the tumor and what it compresses also determines symptoms, Mehta explained.

“That’s why some of these symptoms are so nonspecific, because it really depends on where the brain tumor is growing,” she said.

There are more than 120 types of brain tumors, Karen Shires, a nurse in the Neurosurgery Department at Emory Medical Center in Atlanta, said at a recent brain tumor symposium at Gibbs Cancer Center.

Michael Neely said he was diagnosed with a meningioma tumor. although it is benign, it is now considered cancerous, since it has returned.

He had an operation in February 2010 and another last June.

The brain, which weighs about 3 pounds, along with the spinal cord, comprises the central nervous system.

“the central nervous system is the core of our existence. It controls our personality — thoughts, memory, intelligence, speech and understanding, emotions” and more, according to the ninth edition of the “Brain Tumor Primer” provided by the American Brain Tumor Association.

“there are approximately 100 billion neurons in the human brain, and that’s about the same number they approximate as the stars in our galaxy,” Shires said.

When a brain tumor is suspected, a doctor might order a neurological examination.

Shires said one of the first procedures usually performed is a CT scan; an MRI scan also might be performed.

“a definitive diagnosis is done with pathology,” she said. “the pathology report tells the type of tumor, the location, specific information to identify the tumor, for example, primary (or) metastatic.”

Treatment options can include surgery, chemotherapy and radiation.

The second half of the symposium was led by Dora Il’yasova, an associate professor at Duke University Medical Center, who studies the epidemiology of brain tumors.

She presented data from studies on risk factors for primary malignant brain tumors in children and adults.

But as she noted in her presentation, the lower the rate of cancer, the more difficult it is to study. Children and adults also must be studied separately.

“Epidemiologists in this field realized that no one can do a definitive study on brain tumors — not only on childhood brain tumors, on any brain tumor. We have to come together and try to put our data together and our expertise together to study this terrible disease,” she said.

Researchers are studying chemicals, genetic predispositions and other risk factors to better understand what causes tumors and what the risk factors are.

Dena will keep searching for answers, too.

“It seems the more knowledge you have about it, the more you can fight it,” she said.

“the scarier it is,” Michael interjected before she finished her sentence.

“Sun Tzu (an ancient Chinese philosopher) says to know thy enemy and you can never lose, though there are hundreds of battles,” he said. I guess that’s true — I mean, he’s a great philosopher on the art of war. and what is living, if not war?”

He likens his battle to a three-act play.

Act I was the hospital and rehabilitation that culminated with his learning to walk.

He’s nearing the end of Act II.

“I’m going to read, and read a lot, and study, study to use this awesome brain of mine,” he wrote in an e-mail.

The climax of this act is when he earns his GED and enters college.

“I may still be using a cane. I may still have physical disabilities. I may have them the rest of my life. but I’ll be OK with that, because it doesn’t define me. and I’m so glad Act II is finishing now, so early in my life.”

The last act has yet to begin. but Michael is confident “it’s going to be the longest and best chapter yet.”

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