R.I. woman shares struggle with brain tumor
Posted on: 09/23/2004
R.I. woman shares struggle with brain tumor
DEBORAH ALLARD-BERNARDI , Herald News Staff Reporter 09/23/2004
FALL RIVER -- Kathleen McCarthy was at her wit’s end as she struggled for more than two decades with doctors who continually misdiagnosed her brain tumor as everything from hormonal changes and anxiety to weight gain and scar tissue.
But the spunky 47-year-old survivor of Providence is now telling her story in a one-act play titled "Out of My Head" that chronicles her long battle to learn she had a brain tumor and have it removed, and how it affected her life and health.
The play will be staged Friday at 7:30 p.m. at the Sapinsley Theater at the Nazarian Fine Arts Center at Rhode Island College. Linda Monchik of Fall River will be a performer in the one-hour play.
A unique event, playgoers can also stay for the after-show, when a health care panel of legislators, patients, nurses, union leaders and media address the issues raised in the play -- mainly on how to keep from being misdiagnosed, but also on how illness can affect a person’s life.
"No one knew what it was," said McCarthy of the brain tumor she believes she was born with. "I just knew something wasn’t right."
McCarthy suffered from almost daily headaches as a child in the 1970s, and later dealt with dizziness, lightheadedness and fatigue, she said.
"I used to walk around saying, ‘I have a brain tumor,’ " McCarthy said. "No one took me seriously except my parents. The doctors thought I was crazy or hormonal. The medical community truly let me down."
While she was still undiagnosed, McCarthy went to Rhode Island College, graduated in 1979 in film and theater, got married and then later became a nurse. Still, her symptoms appeared.
"I never had seizures or anything," said McCarthy. "I’ve certainly had a normal life."
But after passing out at work one day, McCarthy began to search once again for the cause of her symptoms.
In 1988, an MRI showed something was on the brain, but McCarthy was told it was scar tissue. In fact, there were 35 medical opinions on McCarthy’s headaches and dizziness over the years.
In 1994, she showed her MRI picture to a young physician at Rhode Island Hospital and asked him his opinion.
"He looked at the MRI and said it was a tumor," said McCarthy.
Fortunately, it was not cancerous and had not grown, but it would still need to be removed.
"I just knew by the symptoms," said McCarthy. "I’m a nurse."
Finally validated, McCarthy was relieved to hear the words, but the tumor would have to wait.
"I was set for surgery and got pregnant," she said.
Doctors told her it would be OK to hold off on the surgery until after she delivered her baby -- Kara, now 10. But, while pregnant, the tumor grew three times its size.
"Hormonal surges cause tumors and other cancers to grow in the body," McCarthy explained.
Shortly after delivering Kara by Caesarian section, she was finally ready for surgery, which was "pretty rushed" because of the tumor’s quick growth.
"I had multiple complications," she said, such as liver failure. She had to "learn to walk and talk" again.
The tumor also left McCarthy with some blindness in her left eye and fatigue. She is currently living on disability, but wants to return to work.
She later found out she had a very rare tumor that only 102 other people in the world have been diagnosed with. So far, there has been no regrowth.
After the surgery and rehabilitation, and an eventual divorce, McCarthy decided she wanted to help other people. She also tried to sue two physicians who she said were negligent, but the statute of limitations had passed.
"Brain tumors are the number one killer of kids under 19," McCarthy said, quoting a study from the Central Brain Tumor Registry of the United States.
Researching statistics and studies on brain tumors has become a real interest of McCarthy’s, who has spent a lot of her time giving lectures and advocating for people who feel they have been misdiagnosed.
McCarthy has published articles with the R.I. Women’s Health Collective and the R.I. State Nurse’s Association. She’s also lectured with the Brain Tumor Society in New York, Boston and Rhode Island, and hosts the Governor’s Commission on Disability talk show, "Able Too." McCarthy also runs an Internet support group through the Massachusetts Institute of Technology.
She was the eastern regional director of S2558, a national Senate bill that brings awareness to the fact that benign brain tumors can kill. It passed in October 2002, she said.
McCarthy said roughly 1 in 10 people are misdiagnosed by physicians, but accurate statistics are hard to come by because people don’t always come forward and file lawsuits, and some die before being diagnosed, she said.
Her advice to patients and doctors when it comes to diagnosing symptoms is "test like hell."
"I’ve heard more and more stories," said McCarthy. "This has got to end."
The play, "Out of My Head," was adapted from a play, "Rainbow’s End," she wrote in 2001. "Out of My Head" is directed by Bob Colonna, son of the late comedian Jerry Colonna, Bob Hope’s sidekick.
It will benefit Hasbro Children’s Hospital’s Tomorrow Fund and the Maryann DiNunzio Memorial Endowment Fund. DiNunzio was a 1965 graduate of Rhode Island College and the first female reporter for WPRI-TV Channel 12.
DVDs and videos of the play will be sold to benefit the Braintrust. The play is being presented by the Rhode Island College Women’s Studies and English departments.
McCarthy said she’s planning to apply for grant monies to bring "Out of My Head" to more audiences in the area.
"It’s upbeat, not depressing," said McCarthy. "It’s not doom and gloom."
Tickets are $15 for general admission, and $10 for disabled people, senior citizens and students. For more information, call the Rhode Island College box office at 401-456-8144.
Deborah Allard-Bernardi may be reached at firstname.lastname@example.org.
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