Why I Fundraise for Glioblastoma Research

I began having nighttime seizures in August 2023. They were very painful; I would bite my tongue until it bled, shake uncontrollably, foam at the mouth, and stop breathing. I was put on anti-seizure medication immediately, but every month I would have another one, almost like clockwork.

After five or six seizures, I was given an MRI, which came up abnormal. I noticed words like ‘glioma’ and ‘gliosis,’ but my neurologist continued to increase my anti-seizure medication. By the eighth seizure, I had another MRI and was finally referred to a neurosurgeon. My surgeon was no-nonsense and cut straight to the chase: I needed brain surgery. My family wanted second opinions, but I had come to the realization that if there was something up there, I wanted it out! So, my craniotomy was scheduled for June 18, 2024.

Surgery day came, and I went in unafraid, the thought of cancer the FURTHEST thought from my mind. My resection was successful, with an unfortunate side effect: I was paralyzed on my right side. My surgeon indicated that my tumor was in the motor planning part of my brain, which is right next door to my motor skills part.

The swelling after surgery pushed on that part, and I couldn’t move my right side. I spent a week in the neuro ICU at the hospital until I was transferred to a rehab facility to learn to reuse my right side. Two weeks later, I was home and doing outpatient physical and occupational therapy, and basically all of my motor skills returned to 90% normal!

It took five weeks to get the official diagnosis. I had grade 4 glioblastoma, a fast-growing and most fatal of brain tumors. In August, I started the aggressive 6-week treatment of radiation five days a week and oral chemotherapy seven days a week. I was very lucky in that I felt almost none of the usual side effects of treatment other than exhaustion. Losing my hair was probably one of my darkest days, but my father shaved his with me! From there, I started the monthly chemotherapy medication schedule of five days on, 28 days off, and I’ve been doing that from September to this very day.

Fundraising for Research

I think my reaction was not what people expected, even myself. I wasn’t angry or depressed, I was numb. I did minimal research on GBM before surgery because there was NO way my pea-sized tumor could be cancerous. How could my brain even begin to process this information that I had thought to be simply impossible?

Once the news settled, my mind raced with thoughts like never getting married or having children of my own, my parents burying their first child, my niece growing up never knowing her ‘auntie sissy’. My family and friends immediately rallied behind me, wanting to do anything and everything they possibly could, but what could they do? So, I simply asked them to pray, to be there for me when I needed them, and to treat me as normally as they possibly could.

I took a deep breath and began to dive into the world of brain cancer and GBM. I bought every book on the internet I could find about brain cancer and glioblastoma. I didn’t want to live in denial, pretending this wasn’t happening. I wanted to educate myself, I wanted to understand what was going on inside my body, I wanted to find survivors and hear their stories of successes and heartbreaks.

Most importantly, I wanted to help in any way I possibly could — awareness, clinical research, fundraising, absolutely anything. In November 2024, the National Brain Tumor Society’s Virginia Brain Tumor Walk & Race came to my hometown of Richmond, Virginia. I created my team, Tori’s Army, and raised over $45,000 in donations for NBTS. The event raised more than $159,000 in total. Now I find any opportunity I can to help this amazing cause that is fighting to keep me alive. It gives me purpose.

Finding Community

I NEEDED a community not only that I could support and support me, but also one that knew exactly what I was going through. The support of my loved ones is pivotal to my survival, but I also found that I get so much more out of life by talking to survivors and loved ones who have lived through this — both those who are still fighting and those who are no longer with us.

There is no such thing as too much support, as too big of a community. By just mentioning brain cancer in conversations with acquaintances and passersby, I have connected with so many people in the community — survivors, loved ones, doctors, researchers, etc.— that I never would have if I had not spoken up about it.

TAGGED WITH: glioblastoma, Glioblastoma Awareness Day

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