Friday the 13th

I was 24 years old, thriving. I had an apartment, friends, a relationship, a loving family, living an adventurous full life. I began noticing I was having moments in time, usually lasting 2-5 minutes, where I couldn’t remember things, significant things. Driving on streets I grew up on, but not knowing where I was, what day it was, where I was and if I had to work. My mouth would get watery, and I always knew it was coming. I felt lost.

My family convinced me to seek help when they saw one of these “episodes” occur. I did my research to find a doctor who would listen to my concerns. I had tried before and was brushed off, calling it anxiety. This doctor listened to what I had to say. She had me record how frequently these episodes would happen, from anywhere from zero to a dozen in a day. She ordered a referral to a neurologist, labs, and MRIs. I was supposed to work the evening I was getting my MRI and was cutting it close. 

My MRI then uncovered what the tech referred to as a “nodule.” He said my doctor was going to call me and that I wasn’t allowed to drive and needed someone to come pick me up and drive me to the ER. I excused myself to answer the line, and it was the neurologist saying they found a ‘nodule’ and the ER was expecting me, and they were going to perform a biopsy. It was a Friday the 13th and Valentine’s Day was the next day, so I made arrangements while I waited. 

I called my dad to have him meet me, my boss to inform him I would not be in, my brother to let him know I couldn’t watch my nieces the next day — all while I waited for my mom. She came to pick me up with her friend to drive me to the ER where I was immediately put into ICU. I was fully alert and aware, sitting in an ICU confused as to why I was even there. Nobody would tell us what was going on. It wasn’t until two days later that anyone ever use the term “brain tumor.” That’s when I learned those moments of memory loss that lasted minutes were actually seizures.

The next day I went in for the first of two surgeries where they removed the largest part of the tumor and classified it as a gangliocytoma — a rare, slow growing benign tumor. One week later, I had my second surgery to remove an additional area of the tumor.

Leaving 10% of the tumor required another surgery and radiation or giving me the option of only radiation. The location was dangerous and I had already gone through so much, so we opted for the radiation. It was a success.

The radiation shrunk a small portion but successfully killed the growth of the remaining 8% that did not shrink. During the time I lost my ability to drive, they had to cut a nerve during one of the surgeries so I lost part of my peripheral vision. I had to move back to my parents, my relationship ended on my terms, and my independence was stripped from me for some time. It took six months for me to get my life back.

Last year, I hit 10 years, and my scans have all been stable. This was the first year any doctors told me the chances of it coming back are rare. I have now been able to have my life back. I have since gotten married, had two children, bought our dream home, and been an advocate to help others going through similar situations. I think back to that time and know I still have my life because of that scan. I have since come to the realization that that Friday the 13th was not unlucky. I was lucky.

TAGGED WITH: gangliocytoma

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