2020 was an awful year for a lot of people, but it was also the year my life turned upside down. It started at the end of August on a Sunday. I was working and all of the sudden my vision went blurry, and I got an intense headache. I didn’t think much of it. I was only 22 years old, and I had the next two days off of work. I thought I would just sleep it off.
The next morning, I woke up and my head was still pounding. I put off going to the doctor because I thought it was just a headache, but this headache never went away. By Wednesday, I finally broke down and went to a nurse practitioner. She prescribed me medicine that didn’t help at all. I tried to go to work after, but my vision started to double. My husband had to pick me up from work because my vision was so bad that I couldn’t drive. By this time, I was in tears. Going to bed was awful, but waking up was even worse.
That night I thought of my aunt Stephanie. In 2013, she passed away from a brain tumor. I remember laying in bed, and I asked her to help me because I knew something was really wrong.
Thursday morning, I woke up and my eye started to droop. I went to the ER and they ordered a CT and an MRI scan. That’s when I found out that I had a tumor near my pituitary gland. I remember leaving the hospital at this point. That evening, my mamaw texted me for an update. I called her, and I remember exactly what I told her, “I have a tumor in my head.” I didn’t realize it was my cousin’s birthday, and her phone was passed around the whole table. I had to repeat this phrase to my aunt, uncle, and dad.
The next morning was Friday. I woke up and I was determined to go to work. My now mother-in-law found an eye patch for me. (We were all in denial that I had a tumor.) My step-mom called and asked me what I was doing, and I told her that I was planning to go to work. She said, “No.” She told me how my uncle who works in healthcare got me in to see a neurologist that day in Richmond, IN. This was two hours away from where I live. So my future husband drove me two hours to meet the neurologist that day. At this time, the Covid-19 pandemic was at its peak. I was only allowed one other person with me. My whole family voted that my uncle should be the one in the appointment with me, since he knew more medical terminology. At this appointment, it was confirmed that this tumor was causing my headache and double vision. At this point the neurologist thought I had a pituitary tumor, so he sent my information to a neurosurgeon who just so happened to specialize in pituitary tumors to see if he could do my surgery.
After this, I went to my dad’s house. Right as I got to my dad’s house, I got a call from the neurologist that I needed to go to Community North Hospital. I was going to be admitted to the ICU and would be having surgery the next day. My dad told me that Community North Hospital was where my aunt Stephanie worked when she was a nurse. The same aunt that passed away from a tumor and the same one I asked for help the night before I went to the ER.
I ended up having surgery that Saturday. I was in the hospital for thirteen days after the surgery. Thirteen days after my surgery, I found out that I had been formally diagnosed with chordoma. My tumor was the size of a golf ball, and it was pressing up against my carotid artery. I was lucky to have the emergency surgery when I did. I believe that my aunt Stephanie was my guardian angel during this moment in my life. My symptoms started on a Sunday and I had surgery on the following Saturday.
Since then, I finished my college degree. I became a teacher! I got married to my best friend. I had a beautiful son. On the first year of my surgery anniversary, I ran ten miles to show that I kicked chordoma’s butt! I thought my life was over when I first got diagnosed, but my life was just getting started. My advice would be: stay positive! Make an uplifting music playlist. I remember my future husband and I singing along to Sweet Caroline on the way home from my proton therapy treatment. Surround yourself with positive people. My favorite moments from this time were being around my family and friends.
The Chordoma Foundation has helped me by finding reliable resources online. I also found comfort in reading stories about others. I have also referred others to Chordoma Foundation when they have asked me questions from a TikTok that I posted about my story.
(The photos included are of me in front of my Aunt Stephanie's memorial plaque at the hospital I had my surgery at. The one with me in the wheel chair was a few days after my surgery. I had begged my nurse to let me see her plaque. The other picture is from my most recent MRI. That is my son that I am holding.)
“You are braver than you believe. You are stronger than you seem, and you are smarter than you think.” - Winnie the Pooh