Kathleen B. McCarthy RN
Dysembryoplastic Neuroepithelial Tumor - 1993
Last Updated: 1/20/2003
In 1993 after literally thirty-five medical, neuro and other sub-specialities I was finally diagnosed with a low grade, meaning a benign tumor in the right temporal lobe. I was thirty-five years old at the time, a high level functioning maternal child nurse. In the 1970's while in high school and even earlier as a child I experienced symptoms that I was neither able to explain nor knew they weren't normal. Around 6 years old I used to see colors on the floor, red, green and white only, spinning and remember hearing sounds slowing down like a record slowing down, for those of us who are old enough to remember vinyl records. Sometimes my neck and head would shake and I had daily headaches always on the right side of my head. I was an honor student, active in drama, band, majorettes, cheerleading etc until in the 1970's when the headaches were constant. The pediatrician did a brain wave, called an EEG. My parents were told it was normal.
I went to film school and then nursing school and practiced in my field, until fainting while assisting a physician in the labor room. That was 1985. I knew something was wrong and began what I call "My Search For Wellness". I started seeing doctors here in New England, then Washington, DC and Maryland
because we had relocated. Not one physician did a brain scan despite my symptoms of headache, blurred vision, memory loss and dizziness. I was labeled with Multiple Sclerosis, Stroke, Lupus, and Anxiety. I was told the lesion they found in the first MRI in 1988 was possibly an old childhood injury or scarring. After thirty-five opinions from all over the country, I was finally diagnosed with a brain tumor. I was booked for surgery and by a strange twist of fate, I became pregnant with Kara so we held off surgery. The pregnancy was difficult with vomiting for 8 mos and gestational diabetes controlled by insulin injections. Finally after delivering her in Dec 1993 by Ceasarean section, the tumor grew as I predicted because of the hormonal surger from pregnancy.
Dr Arno Fried of then Rhode Island Hospital now Hackensack Medical Center, Hackensack, NJ, operated in March 1994 for a right temporal lobe resection without chemotherapy or radiation. Recovery was fine at first then I suffered liver failure from seizure medications and viral menigitis possibly from the immunization shot Kara received 8 weeks old. Today, I am unable to practice Nursing on the floor because I deal with a vestibular disorder otherwise known as
a disequilibrium of the brain. I can't balance well. Theory is the menigitis has caused that and despite physical therapy it has not resolved. Cognitively I am much better over the years for I wasnt initially and went back to school for a second nursing degree in 1997. I remember not recognizing my own infant daughter and hallucinating from the Decadron medication we use for edema in the brain.
My husband decided that brain tumors or chronic illness is not something he felt like facing, so he abandoned my two year old and myself in 1996, just when I was recovering. I live with my mom, dad and my beautiful, now 8 year old Kara and have lectured, done talk shows, newstories on Misdiagnosed patients, patient advocacy and helped with the Benign Brain Tumor Registry Amendment Act S2558 that passed on Oct. 29, 2002. I have written a screenplay now redoing it into a play for various venues in New England. I am and do remain extremely lucky, despite the deficits and disablities from this disease and the reason I went public is because I am very thankful to have done so well. I wish everyone who reads this to NEVER
GIVE UP your search for wellness, your search for hope and dreams for a cure.
Kathleen B. McCarthy RN
Providence, Rhode Island
DNET 1993
