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READ MOREPublished on March 26, 2025 in Share Your Story
Guest Author: Alex Edwards in Washington, D.C.
My name is Alex Edwards. I’m a 24-year-old brain cancer survivor currently living in Washington, D.C. I moved to D.C. to attend George Washington University, where I studied political communication. I now work in public affairs at a communications firm in D.C.
In December 2021, during my senior year of college, I started having headaches almost every single day, which was quite abnormal. I brushed it off because I was a very healthy 21-year-old. The headaches were at a migraine level every single day, and then I started to have some vision problems. I started to be unable to see out of the corner of my left eye, which I noticed when I was running. I had some other incidents, waking up in the middle of the night with extreme pain.
In early February 2022, I finally saw a primary care physician who determined I needed to get an urgent MRI, which identified a sizable brain tumor. My parents flew to D.C. from my hometown of San Francisco to join me for my subsequent appointment with the neurosurgeon.
My surgeon found that the tumor was blocking the flow of cerebrospinal fluid to my brain, so they created a hole to allow that to flow again. This surgery alleviated a lot of the headaches and vision problems almost immediately. Pathology from the tumor biopsy determined my tumor to be pineal germinoma.
My doctors explained that I had a pretty rare tumor that had migrated to my brain at some point when I was in the womb. They made it sound like it was a ticking time bomb in my head. They said most people who end up with this type of cancer end up showing it in their mid-to-late teens. I was 21 at the time, so I figured I was a late bloomer.
After surgery and several nights in the Neuro ICU, we quickly set up meetings with my oncologist. Because of the type of cancer I had, I was able to be treated in a pediatric cancer ward. Over the course of a few short days, I met my oncologist, set up a care plan, had surgery to place my chemotherapy port, and began infusion chemotherapy.
When I was first diagnosed, several doctors explained that I would not be able to finish the semester while receiving treatment. Throughout chemo, I attended classes when I could. My professors were very supportive; I knew them fairly well since my major was small. I tried to be as open and communicative as possible.
When I first heard the news, I really thought I could fight through the treatment and have plenty of time to do school by stopping my in-semester internship. But that was just not realistic. I think it’s important to be kind to yourself because cancer is just a huge, major, crazy. It was a tough thing I went through, so it’s fine that everything didn’t go exactly as planned.
During chemo, I began suffering from brain fog, like many people do. I couldn’t read a book or do an assignment because I couldn’t understand it. It was hard to remember that it’s okay to just focus on your health at the, hopefully, hardest time of your life.
When this started, I knew I would not be able to complete my work (e.g., class papers) on time. However, I really wanted to walk at graduation with my class. I explained the situation to the university, and they were kind enough to let me walk with my class and wear the cap and gown in May.
I was very determined to try to get my life, as I saw it, back on. I felt like I had a plan for the year — I would finish school, start my job in D.C., and kick off adulthood. I was really frustrated and a little angry that I was derailed by getting sick. So, I was bound and determined to force myself back on that track. I finished treatment, and then I took a vacation. After that, I started my job and then finished school. Looking back, it was really difficult.
I had four rounds of chemo. For each round, I would come and do infusions for three days in a row and then have three weeks off between each round. They warned me that the rounds would get harder and harder as I progressed through them. After the first round, I felt fine after a few days. By the fourth round, it took me a long time to recover from the infusions.
I had some nausea, but the thing that got to me was the brain fog and fatigue.
Fatigue is deep. It feels like it’s deep in your bones. It feels like there is some kind of weight on you that is just preventing you from doing things. When you’re fatigued, you think, “Why am I so fatigued? I have walked 300 steps today. I haven’t really left the house. There’s no reason for me to feel this way.”
I was even more fatigued during radiation treatment, and then that fatigue continued long afterward. I was dealing with fatigue and going to doctors and talking about the fatigue for years after I finished treatment in July 2022.
I only recently figured out the cause of my fatigue and started dealing with it. The big thing was drilling down on what caused it. For me, the ongoing fatigue came from hormonal changes. When they did the radiation, it went through some of the hormonal glands in my brain, so it just caused some issues. I met with an endocrinologist, who quickly came up with a solution that has been working for me.
My own experience with brain cancer prompted me to get involved with brain tumor advocacy. Today, I’m in remission, and I know how lucky I am and how rare my story is among other patients who face similar diagnoses.
It was a real pleasure to be able to share my own story during Advocate From Your State. In college, I actually interned on the Hill. Discussing my experience and story with congressional staff members opened their eyes to the unfortunate reality that brain tumors can happen to anyone at any time.
I’m excited to continue pushing for solutions and support from policymakers, especially when it comes to the BRAIN Act.
Passage of the BRAIN Act would signal that policymakers are taking seriously the unique, life-long challenges created by brain tumors. The funding for research on all levels—from clinical trials to improving survival rates—would be significant.
Personally, I would also be very grateful for the BRAIN Act’s provision to work on enhancing survivorship experience. When I went into remission, my oncologist said that I would live a long and happy life — fingers crossed. The BRAIN Act would give more patients the same opportunity.
Join advocates like Alex from across the U.S. at the 15th annual Head to the Hill® in D.C. on May 4-6, 2025. Participants will meet with their representatives in Congress, share their stories, and advocate for better policies and more federal funding to fuel brain tumor research.
Anyone impacted by a brain tumor is welcome: no previous experience is needed, and you won’t be alone — our NBTS staff and seasoned advocates will provide both training and support.
Sign up today to ensure your voice is heard on Capitol Hill.
TAGGED WITH: pineal germinoma
Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.