On November 14, 2018, I started walking up the stairs to the platform of Victory Chapel Church in Jacksonville, Florida where I sang with the worship team. My body and brain were not in sync. Suffice it to say I was not in conscious control, and I felt like my body was moving backwards while I was trying to go forwards to climb the stairs. I began falling. My worship team leader, who very well may have saved me from suffering a broken neck, reached for me and grabbed me just in time. We laughed it off, but deeper inside, I just knew something was wrong. To make things worse, when I got to the top of the platform a few minutes later, without meaning to, I walked into a wall (amazingly, people were still arriving at church and no one saw me do it). By sheer force of will, I stayed, trying to convince myself I’d imagined it all, that I was fine, and I stayed and sang several songs until we were done.
After church, I told my husband, Mike, what happened. We went to the Baptist/MD Anderson ER near our home in St. Augustine. I was impressed, and frankly a bit scared, how fast things progressed once I relayed my history of a TIA in 2014, and that night’s events. They scheduled an MRI. Then things REALLY went fast!
“What I appreciate about her is that, thanks to her empathy and keen perception, she hears a question where I may not have articulated it, and gently guides me through my issues with possible answers, ideas and suggestions…Her value cannot be measured or praised enough. I know that I truly depend on her helping me navigate through the often murky mess that we who’ve had a brain tumor experience.”
I was transferred to Downton as Dr. Eric Savageau, the neurosurgeon, had found a Grade II Meningioma on the MRI. Calling it “pricey real estate,” he told us the meningioma was sitting right alongside my brain stem, which pretty much controls everything, so they would only be able to safely take out about 90%.
He said we would need to decide on whether radiation would be needed afterward. I knew then that I did not want to do it. The area was so dangerous. My family supported my decision. Surgery was set for Jan., 2019, after the holidays.
But a few months later, my younger sister, Eileen, asked me if I had heard about proton therapy radiation. I had many years earlier, but hadn’t thought of it, so my husband and I made an appointment to check it out. Everything we learned from the radiologist convinced me this was a safer answer to radiation if and when the time came.
About a year after my brain surgery, the tumor started growing, so it was obvious I needed the radiation. There were 34 radiation treatments. The mask they mold to fit your head? Scariest part of the whole process. I had already taken an anti-anxiety pill, but needed a second. My claustrophobia was in full swing! When I look at it now, I know it was seriously the scariest thing I’d been through!
I wish I could tell you who told me about the Brain Tumor Network, but I forget how I learned. As time has gone by, I know for a fact that I would never have progressed as far as I have without the help of my social work and nurse navigators. Although I’ve had fewer phone calls with my nurse navigator, it’s because I need more social worker help. My nurse navigator has been great on the medical side of things, for which I’m very grateful, and she is both friendly and professional!
My social work navigator has been outstanding, and I look forward to every call! She doesn’t just listen–It would be fine if that’s all she did. And sometimes, that’s all we need. But what I appreciate about her is that, thanks to her empathy and keen perception, she hears a question where I may not have articulated it, and gently guides me through my issues with possible answers, ideas and suggestions. We few brain-injured patients go through such unique challenges, and few people would understand us. I rarely understand myself! But my social work navigator does. Her value cannot be measured or praised enough. I know that I truly depend on her helping me navigate through the often murky mess that we who’ve had a brain tumor experience.
As we are just one percent of the population, finding and hiring someone like my navigator who UNDERSTANDS us is like finding a precious gem you weren’t looking for in a pool of ordinary stones. She is really, truly one in a million! Thank you, Rick Sontag for starting this wonderful organization! I would, indeed, be lost without it!