The headaches started when I was 12 years old. I would take a couple Advil and try to take a nap. They’d go away after a while, but over time they became more frequent and more intense. My pediatrician told me it was stress, dehydration, related to my period or from lack of sleep. Basically, I was “too young” for it to be anything more.
At 16, the headaches would get so bad that I’d lay in bed crying. I’d miss school, because it hurt to move. But still, I was “too young.” By this point, I switched from Advil to Excedrin. Advil just wasn’t cutting it anymore.
When I turned 18, I went away to college four hours from my hometown. The stress of school got more intense and so did the headaches. They were always in the same spot. Drinking more water didn’t help. Exercising didn’t help. Sleep helped only half of the time. And I was now taking Advil AND Excedrin migraine. Everyday. Just to function. The doctors at my university and back home still attributed the headaches to stress. Somehow I was still “too young” and no tests were ever done.
In April 2013, I was 22 and getting ready to graduate the following month. I had some “weird” moments that year: I took a bite of a sandwich once and all I could taste was ‘formaldehyde’ or at least what it smells like. In one of my science classes, I was doing a project and I got very dizzy and ‘lost’ my sense of hearing. I almost passed out. (Note: the headaches were awful and nothing helped at this point.) And then the BIG symptoms hit – within days of each other. I was talking with a friend and I suddenly didn’t know what was coming out of my mouth – I was thinking the words, but couldn’t tell if I was saying them. And another time, I was talking complete gibberish, I couldn’t think of the words at all. AND I had a massive headache. The “worst headache of my life” (WHoL in the medical world).
On April 25, 2013 – 16 days before my college graduation – I went to the ER with my dad. I told the receptionist my symptoms. I thought it was a transient ischemic attack (TIA) or mini stroke, and she took me immediately back to triage. I had some school notes to study for finals, thinking it would be a long visit. Ironically, as a pre-med major in college, we were studying the central nervous system and, two days prior, I was holding a human brain in my hands.
A nurse came and personally walked me to radiology for a CT scan. She walked me back to the triage room when it was over. Within ten minutes, a doctor came into my “room” and bluntly told me: “the CT scan shows that you have a golf-ball-sized tumor on your brain. It’s likely cancerous.”
My dad wasn’t even in the room with me. I sobbed as this doctor told me I was being admitted and they already set me up for a neurosurgery consult that night. The doctor and nurse then left the room to get my dad. Unbelievably, one hour ago I was a “normal” college kid with a semi-normal life. Now I have the big C. And not just any cancer, but brain cancer!
My dad came into my new in-patient room crying and on the phone with my mom, who was still four hours away at home. But six hours later, Mom was there, with my aunt and uncle. My boyfriend and best friend were also there as a tech came to get me for my first ever MRI. I tried to make stupid jokes and find reasons to laugh, but all I could do was cry. The neurosurgeon wanted to do surgery the next morning!
I refused. I wanted and needed a second opinion from a surgeon closer to my home town. The surgeon in my town told me it was “slow growing enough” that I could walk at my graduation ceremony and then come home for more tests and, finally, surgery.
I had an awake craniotomy. I can’t lie, being a pre-med major and general science nerd, it was AWESOME that I have memories from my surgery and waking up during it).
But when the pathology report came back, I was diagnosed with a glioma, mixed grade II / III, I sobbed.
The surgeon told me it had likely been growing in my head for 10 years. I was 12 when the headaches started and doctors brushed me off as being “too young” for it to be anything “serious.”
I joined ABTA for information and to talk to people in “similar” situations.
In 2017, my tumor (the “pissed-off gnome”) started to grow again, and I went through 30 days of proton beam radiation therapy.
It’s been eight years and one month since my tumor was found (eight years to the day since my surgery) and I have:
- “Discovered” many people in my own life who had/fought/passed away from brain cancer – people who only told me they too had “it” when I posted on social media.
- Met and lost a lot of wonderful people to brain cancer.
- Had 20+ seizures blamed solely on scar tissue from my surgery.
- Cried myself to sleep too many times to count out of fear and worry.
- Panicked over every headache, every “weird” feeling and every MRI.
- Googled the prognosis 100+ times and praying that it’s changed or gotten longer.
- Begged god / a higher power to let me live long enough to see my five-year-old daughter graduate college and get married.
- Gathered groups of friends and family to raise awareness and get funding for this awful disease.