EDISON – There was a point in 34- year-old Beth Rosenthal’s life when she did not want to be here.
“I would ask myself why I was alive,” she said. “But I know if I did anything, it would just crush my mom [Judy].”
Rosenthal was diagnosed with childhood cerebellar astrocytoma, a disease in which benign or malignant cells form in the tissues of the brain. She was diagnosed in January 1986 when she was 11 years old. Her brain tumor was found to be benign.
Her diagnosis was later changed to childhood brain stem glioma, which, according to the National Cancer Institute, is when tumors arise along the structures of the brain stem, which is the part of the brain that controls breathing, heart rate, and nerves and muscles used in seeing, hearing, walking, talking and eating.
Rosenthal’s story starts at the age of 6, but it took participating in the Have a Chance Walk to Fight Brain Tumors in 2006 in New York City, when she was 32 years old, and seeing her ordeal on paper, to realize her true passion.
“My dream is to start my own foundation for benign brain tumor survivors and their caretakers,” she said.
In February, Rosenthal started the New Jersey Chapter Support Group for Benign Brain Tumor Survivors.
“We meet the second Monday of every month in the Edison area,” she said. “It’s really in the beginning stages, and we had our first meeting on March 10. The meeting went well, but we only had two of us, so we met at Panera Bread.”
Rosenthal’s journey starts fives years before she was diagnosed with cerebellar astrocytoma, and later with brain stem glioma.
“I was 6 years old, and I was always nauseous and would go to the school nurse every day,” said Rosenthal, who said her classmates thought she just liked the school nurse. “I did like the school nurse, but it was something more serious.”
As a child, Rosenthal was extremely active.
“I took jazz and gymnastics lessons,” she said. “One of my fondest memories is doing cartwheels outside my mom’s apartment near the Menlo Park Mall.”
Along with being nauseous, Rosenthal became pale and lost a lot of energy.
“I attended speech therapy to correct a lisp,” she said. “My voice became very nasal, and my speech therapist suggested I see an ear, nose and throat doctor.”
Rosenthal was sent to have two CAT scans and was found to have a benign tumor. In late January 1986, she underwent brain surgery by Dr. Fred Epstein, a pediatric neurosurgeon at New York University Medical Center.
Even though Rosenthal’s tumor was found to be benign, it was recommended that she receive radiation treatments, just to make sure the tumor wouldn’t grow.
For nearly six weeks in the summer of 1986, Rosenthal and her mom stayed at a New York City hotel while she received radiation treatments at NYU Medical Center.
In an article she wrote for the Courier News in 2006, she said her mother tried to make her stay in New York City feel like a vacation.
“We went to the theater, ate at Tavern on the Green, took the Circle Line, did some sightseeing, etc.,” she wrote.
Over the years after the radiation, Rosenthal suffered side effects including a weak left side, lost motor skills, nerve damage to her left ear, and frequent hours of dizziness.
“It’s difficult for me to pick up a mug,” she said. “But doctors tell me the more I try, it might help my brain to connect my hand to pick up the mug.”
The loss of her hair was a horrible experience, but, she explained, she would wear scarves tied around her wig, Madonna-style.
And then, at the age of 16, a pain took over her life for 13 years.
Rosenthal was diagnosed with trigeminal neuralgia, which, according to the National Institute of Neurological Disorders and Strokes, is a chronic pain condition that causes extreme, sporadic, sudden burning or shock-like face pain that lasts anywhere from a few seconds to as long as two minutes per episode. The intensity of the pain can be physically and mentally incapacitating and is typically felt on one side of the jaw or cheek.
“It was the middle of the night, and the pain woke me up,” said Rosenthal, who said the pain was concentrated on three spots on the left side of her face. “It was kind of like a toothache, but toothaches can be taken care of. I actually remember punching my face, thinking that would get rid of my pain. It was so devastating, and I was in agony all the time. My mom took me to the [emergency room] that night. I remember people thought I was doped up all the time, and I felt like I was being treated like a drug addict since I was on so much medication.”
Rosenthal remembers that there was a pain that she felt when she was 12, but it had gone away. She also remembers feeling dizzy, but the pain that she experienced at the age of 16 was nothing that she had felt before.
“I had to miss two months of school, but when I went back, people thought I was fine. No one ever asked me what had happened, not my school, not my temple, no one,” she said. “That is why I feel this support group that I have started is so important.”
Rosenthal’s parents, Jerry and Judy, divorced when she was young, but she said they have been very supportive. She traveled with her mom everywhere throughout the country to doctors to treat her pain. Her father researched different doctors.
“It was supposed to be a new and exciting beginning, since my mom and I were moving into a new apartment; however, it was a setback because of my pain,” she said. “It made me feel really bad and sad.”
In 1991, Rosenthal graduated from J.P. Stevens High School in Edison.
“My parents both went to Brown University, and I assumed I would go to
Brown, but it wasn’t realistic with all that happened,” she said. “I was disgusted with life and thought life would be OK far away at college.”
Rosenthal attended Moravian College in Bethlehem, Pa., and remembers that college was a blur.
“I majored in sociology and minored in Spanish,” said Rosenthal, who added that if it had not been for her mom, she doesn’t think she would have gotten her college applications done. “I really don’t know how I graduated, because I remember either falling asleep in the library or socializing in the library. It was very hard to pay attention and study. It was horrible because you would want to spend time enjoying while you could.”
Rosenthal graduated in 1995.
“I remember my roommates would bring me to the ER because of the pain,” she said. “I can’t even remember clearly the fun times I had with my friends at school.”
In 1999, Rosenthal moved into her own condominium in Edison.
“I’m on disability and work part time with accounts receivables and payables at Bed Bath & Beyond in Union,” she said.
In 2006, Rosenthal and her family and friends attended the inaugural Have a Chance Walk to Fight Brain Tumors in New York City, which raised more than $1 million.
“I realized that I was not alone, and it really inspired me,” she said. “I used to just cry a lot because of the pain, but the walk showed that I could be productive and see good changes for the rest of my life.”R
osenthal, who said she would continue participating in the walk, said she has found so much information for brain tumor cancer survivors, but not a lot for benign brain tumor survivors.
“We are all fighting a different battle. Their battle [for brain tumor cancer survivors] is about life and death, and our battle is about quality of life,” she said.
For more information about the New Jersey Chapter Support Group for Benign Brain Tumor Survivors, contact Beth Rosenthal at [email protected] or visit http://braintumor.meetup.com/50/.
For more information about the Have a Chance Walk to Fight Brain Tumors, visit www.haveachancewalk.org.