In the spring of 2022, I started getting what I would can best describe as a severe headache. This started happening after I would sit for an hour or so then stand up.
Thinking back, ‘headache’ is nowhere near accurate. More like an attack on my brain, instant in its severity to the point where I would have to stop what I was doing and ride it out. I got to the point of telling people, just a min, it will go away…. only lasts around 60 seconds as I was hunched over. The only comparision I can come up with is an ice cream headache in a different spot of my brain and 10 times worse.
These “attacks” got more frequent and then to the point where I wouldnt feel right afterwards. After going to the chiropracter, making changes to diet, stretching, anything I could think of, I made an appt with my family dr and casually mentioned it. She was perplexed but thought it could be related to blood pressure when I stood up, however before trying any meds, decided to be safe to send me for an MRI. I was so not worried about it, I went on a Saturday by myself to get the brain MRI done.
By Monday afternoon, I was sitting in a brain surgeon’s office being told I had a golf ball-sized brain tumor and, other than surgery immediately, there were no options. I was told that the “headaches” I was having were seizures and I could not drive, swim, take a bath, or be alone due to seizure risk. I was scheduled for immediate brain surgery less than one week later.
He mentioned if it was cancerous, removing it would do no good. That I had months potentially. The things I didnt know as I lay their waiting for surgery. Will I be here to watch my kids graduate high school, get married, and have babies? Due to the tumor’s location in the right frontal lobe, when I wake up from surgery, will I still be me (the right frontal lobe is personality)? Will I have my memories will I recognize my boys?
They couldn’t tell by my MRI how much of my brain was impacted. I woke up from surgery asking over and over to anyone who would listen to me, “Can YOU get me a Diet Pepsi?” “Pain you ask? Not good, but can I have a Diet Pepsi?” My family knew I was still me. Surgeon came to see me and said surgery went great, tumor removed, little brain gone, all good things. Now go home and wait five weeks for results to come in from Mayo to see if it is cancerous.
As I healed, I tried not to worry about not seeing another Christmas with my family. I stayed as positive as possible. FINALLY, results are in! Go to the surgeon’s office to find out that it was not cancer. However, it is an extremely rare tumor — only 66 cases had been reported through 2018. There is little research about my olfactory schwannoma.
This is the part that still gets me today. I want more information on this tumor. I NEED more information. It took up residence in my brain and impacted my life in a huge way to this day.
I recently turned 50, and SO MANY people acted like that was a negative thing. Oh NO, your 50?!?!?! I smile and know that they have never seriously worried that they might not live more than a few additional months and yay for them, however, I love EVERY SINGLE BIRTHDAY. Growing older is a gift.
Here is how my experience changed me. I look for joy in everything, and take nothing for granted. If something or someone does not contribute to my joy then I avoid it and it is so freeing. My friends say, “You seem like nothing ever bothers you. You act like life is perfect.” Things bother me, just not like they used to. I know what is truly important in life, having spent five weeks in bed thinking about nothing else.
