To the Less Than 1 Percenters

On November 20, 2023, I headed into the Seidman Cancer Center at University Hospitals in Cleveland, Ohio, for my annual 4-month MRI checkup and meeting with my neuro-oncologist. As usual, I am pretty calm on these days. I do not know why because, essentially, my life is hanging in the balance and can change at the drop of a hat on scan days. God, angels, the universe, mother nature, or whatever you want to call it, must have my back on these days (and every day). 

I lay in the MRI machine and take a 45-minute nap (I can sleep through anything). Then I head up to the first floor to see my oncologist and receive the results. My mom and I wait patiently for the doctor to come in, but in the back of our heads, I think that we know that everything will be fine since, luckily, it has been for the last 7 years. 

This doctor will be my third new doctor in the past couple of years which is always very hard. He does not know me. I barely know him. He doesn’t ask many questions, which bothers me. I want him to know every single thing about me, like the doctor who saved my life did. She was amazing. He gets to the point and tells me that my scan does not have any changes. 

He goes on to tell me that I am a miracle and how lucky I am. I am happy. Then he says something along the lines of “You are less than the 1 percent of people in this world to survive this disease.” Now this is something I have never heard before and it shocked me to my core. I immediately started crying and asking questions. I know that GBM has a very low survival rate, but this?? This took the joy out of my clear scan day. He asked me why I was crying and I said, “Wouldn’t you”? He said that I should be really happy about this news and then proceeded to tell me that I suffer from survivor’s guilt. My question is: How do you not suffer from survivor’s guilt when you know that people with way less aggressive cancers have passed on before you?

My cancer journey began in the winter of 2012. I remember not feeling like myself at school. I was in my second semester of junior year at Kent State University. I was under a lot of stress and pressure in my classes, and I remember feeling really sad and crying a lot. Sometimes I didn’t know why. I am normally a really happy person, so I was alarmed at this change. I was also losing a lot of hair and just overall not feeling myself. One morning I woke up with a numb big toe. I had attributed this to working on my feet all day (sometimes even 11 hours) on Christmas break at the mall. I had gone to my pediatrician two times to see what was going on, and everything seemed to be normal. She told me that I was probably experiencing seasonal depression and that I should go back to school. So that is what I did.

On January 25, 2012, I was giving a presentation to my classmates, and I started feeling very weird. I asked my teacher if I could sit down and finish the presentation. I remember looking at the floor and seeing flashing lights. I finished my talk, and as soon as I got up to go back to my seat, my left side gave out, and I had a really hard time walking back to my seat. That’s when I excused myself from class and called my mom. My boyfriend at the time took me back to my parents’ house, and we went to the ER. That’s when I was diagnosed with a brain mass. They did not know that it was cancer at the time, but for some reason, I had a feeling it was.

Two brain surgeries, 8 weeks of radiation, two and a half years of chemo, gamma knife surgery, clinical trials, tons of hyperbaric oxygen treatments, hundreds of MRIs, many years of PT and OT, and a lifetime of trauma later, here I am sharing my story with you. Cancer has taught me so many things: how to have hope, how to be strong, how to be adaptable and face many challenges, how to love hard, and how to feel others’ emotions. I try to live by the motto that every day is a gift. I do not know why God chose to save me. I ask myself this basically every day. Maybe writing this story to you is the reason. Maybe sharing my story is the reason. All that I know is that I am desperate to find out.

TAGGED WITH: brain tumor, glioblastoma

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