In 1991 I fell off a horse, had a concussion and lost about an hour of short term memory. A trip to the hospital and CT scan showed no intracranial bleeding so I didn’t need an emergency surgery. But then the ER doctor showed me my films and said, “We see this other shadow and recommend you see a Neurologist”. There were dark fuzzy specks in the upper left side of my brain.
Scared shitless I went through all the testing. When finally referred to a surgeon I had a date in 10 days. Craniotomy. Shit. Pop the top. Biopsy the tumor and take it from there. I cried, went on a planned working vacation to sing in Georgia and then told my family.
I didn’t get a second opinion. I didn’t spend all day pouring over the journals and books seeking knowledge of this thing in my head. I didn’t see a Neurosurgeon who specializes in brains in a University setting and does more than a handful of craniotomies in a community hospital. I wanted to stay at the hospital and Operating Room where I worked and knew everyone.
I was foolish.
My surgeon told me the biopsy was negative. It was not a glioma, but gliosis. Inflammation. He used those words. Every year I had an MRI and every year he told me it was negative, the tumor hadn’t grown. But it could change. Any day now. It’s like a time bomb in my head and affects me every day.
After surgery I had paralysis and seizures. Physical Therapy helped, but I wear a brace on my leg, and over the years the muscles have atrophied. The anti-epileptic drugs made me sick and affected my ability to think clearly. They cost me my nursing and singing careers. I hated the “poor Bonnie” thing and hid my problems and fears well, developing a fictional cover story for what was happening to me and how afraid I really was. I’m a good actress and tried to make everyone else feel okay about this.
Well sort of, THIS is a true story.
Seems the brain surgeon biopsied the wrong area and my tumor was untouched. My original surgeon died and several years later I was encouraged to a see a new neurosurgeon to continue follow-up. He was puzzled. He put 2 MRIs up on a viewer, the first time I’d ever actually seen my brain. There was a big hole where some of my brains should be and a big dark blob next to it. It went something like this:
Here’s your brain. Here’s the tumor before surgery. Here’s the tumor after surgery. There’s no change. All this adjacent tissue is removed, but the tumor was not biopsied that I can see. I don’t know what tissue he sent to pathology, but it was not of this tumor. I want to schedule you for a biopsy.
That was 1998. I had just gotten engaged and life was good. I got a second opinion in New York with a terrific specialist who does only brains. Dr. Brains ‘R Us said
- Is it a tumor? Yes, probably a very low grade.
- Can I take it out? Yes, modern equipment can decrease damage.
- How would it affect you? More paralysis, probably most of your right side.
- Would I have this done? No. Not now. Go home. If your symptoms change, your doctor at University of Maryland can evaluate you and I’d be glad to see you again if you want me too.
So I went home and dealt with it for 9 years. 9 years. In the last year or so I’ve let it drop that this tumor is still in my head, was untouched and I had a wrong site surgery. Yeah, yeah, yeah, I could be a rich woman. But he’s dead. And my brain is gone. Every year I have an MRI and every year my neurosurgeon tells me it hasn’t grown. It has not changed at all in 16 years or maybe longer, but every year he wants to open my head and expose me to more grief. Every year I think of the vibrant symptomless body I had before some crackpot scooped out a quarter of my healthy brains and every year I say no.
Until this year.
In January it was bigger. He gave me the names of a surgeon at Hopkins and an Oncologist so I could get more opinions. I ignored all of his advice but my symptoms were increasing. Finally in August I went to see Dr Olivi, Director of Neurosurgical Oncology at The Johns Hopkins Hospital. He said I have to forget about the previous surgery and treat it as if I just found out I have a brain tumor.
I’m having the surgery.
On September 26 I’m having a Craniotomy and Brain Biopsy at Hopkins. It seems so strange, but I’m not as scared as I should be. I’ve been living with this for so long that it’s like going in to have my Gallbladder out again. I’ve had all these weird signs from my Mother who died 10 months ago. Signs have been pointing that everything’s going to be okay. I believe she’s been pushing me to finally get the damn biopsy done so I can put my mind at ease after all these years.
So wish me well, say a prayer, think of me in the coming weeks while my adoring husband and I figure this thing out. We’ll be okay as long as we do this together.
