The Day Time Stood Still

Brain Tumor. Neoplasm. Mass. 

No words you ever want to read on your MRI report, but my reality as of June 2, 2022, at 12:56…the moment time stood still. The wait after was full of anxiety, unknowns, what-ifs, tears, anger, sadness and fear. A blessing in disguise: a pre-existing planned weekend in the mountains with family, away from civilization and cell service, where I was away from up-to-date Dr. Google, medical journals, and literature.

On Tuesday, June 7, I spent nearly three hours in an MRI machine getting further scans of my brain and entire spine. Fortunately, these scans have shown no evidence of leptomeningeal (spinal fluid and the membranes that surround your brain and spinal cord or osseous (into bone) spread of disease. 

Headaches were the reason that my primary care provider (PCP) and I decided to pursue an MRI. I had occasional headaches behind my right eye that have been fairly predictable around my cycle and with hormone changes. However, 2021-2022, they have been more frequent, more severe, and not always associated with my cycle. Go figure, I had a baby, breastfed, and stopped breastfeeding. Hello, hormones!!! Shortly after COVID, I experienced very sharp, intense, severe headaches that I attributed to some weird post-COVID sequelae. I’ll never forget the day I sat in a pitch-black, silent room on my son’s first birthday with a debilitating headache. It was that day I decided no more kicking the can down the road, so I sought evaluation with my PCP for evaluation of headaches that were worsening each passing month.

Fast forward nearly two years, more than half a dozen scans, three neurosurgery evaluations at two different centers of excellence, and it has been decided my tumor has likely been there a while and is non-malignant. Most would find that reassuring, and we do thank the Lord for that tiny miracle, but brain tumors can still be benign, debilitating, and/or lethal.

The concern with the tumor is the critical location. The tumor is in an unfavorable location in my 4th ventricular-brainstem region. Currently, there is narrowing where spinal fluid flows, but there is no complete obstruction or hydrocephalus. Complete or even partial resection could cause irreversible, catastrophic damage or death. We discussed biopsy to definitely have answers as to what this is. This again comes with risks that can be detrimental.

The mass doesn’t have clear, distinct features of one particular type of tumor (glioma and subependymoma have been thrown around). This mass could have been here a long time, and we just incidentally came upon it…we just don’t know. For now, we rest our faith in the Lord each and every day, and I live life to the fullest. I still get frequent scans and checkups with my neurosurgery and neuro-oncology teams locally and in Cleveland, Ohio.

I am mindful of my “red flag” symptoms, but I continue to live life enjoying my job, my children, my husband, my family, friends, and travel. I am thankful for the network of individuals, mentors, and support systems I have in place through the National Brain Tumor Society, the American Brain Tumor Association, and the Brain Tumor Network. If it wasn’t for these organizations, I’m certain I’d still feel lost, alone, and scared on this journey.

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.