The Invisible Toll of a Meningioma Brain Tumor

On August 1, 2024, I was rushing down the stairs and missed the landing, falling seven stairs and hitting my head on the hardwood floor. I put ice on my forehead and took some Tylenol for the headache.

A few hours later, I took my dog for a walk and sent a selfie to show my friend the ugly lump on my forehead. She told me that Liam Neeson’s wife had died of a brain bleed after a head strike and encouraged me to go to the ER — just in case. I drove myself to the local hospital, where a CT scan revealed a brain tumor and massive swelling.

I was immediately transported to Yale New Haven Hospital and, five days later, underwent a right frontal craniotomy to remove a 3 cm WHO Grade 1 meningioma. The doctors called this an “incidental finding,” but I believe I had a guardian angel.

Similar to other brain tumor patients, for several years I had experienced symptoms, such as dizzy spells, morning headaches, blurred vision, and facial eye droop on my left side. These symptoms had either gone undiagnosed or were attributed to other issues, such as too much time spent on the computer, job-related anxiety/stress, and aging.

Life Changed Immediately

When you face your own mortality, your life changes instantly. When the ER doctor told me I had a brain tumor, at first, I was in disbelief, but then I became frightened, because 10 years earlier we lost my sister-in-law to a glioblastoma. I decided to remain positive because I knew I wasn’t ready to die. I was going to make sure I got the best neurosurgeon and live a long and healthy life.

Divorced a few years earlier, I have just one 25-year-old son, so my thoughts immediately were about him. The ER doctor called my son, explained the diagnosis, and instructed him to drive to Yale New Haven, where I was being transported. When I saw my son at Yale ER, I held back tears, smiled, and assured him I would be ok. I did not want to scare him or burden him in any way. A graduate school student studying to be a Physician Assistant, he was well aware of the severity of the situation.

After he went home the next day, I called my lawyer to ensure my financial affairs and health care proxy were in order. I contacted my employer and made sure everything was all set on that end. Over the next five days, before surgery, I reached out to those people who are important in my life and shared the news.

Finding Brain Tumor Support Conversations

As I recovered from brain surgery, I began to feel like I had no one who truly understood what I had gone through. People would tell me, “You look great,” but it made me feel worse instead of better. No one knew the emotional toll the diagnosis and surgery took on me — ongoing fatigue, memory, and concentration issues — I just didn’t feel like “me.”

I was referred to the NBTS support group, Brain Tumor Support Conversations, and found a community of survivors, caregivers, and others who immediately embraced me because they also had experiences with brain cancer. I was hesitant to participate on the first Zoom call because everyone’s stories and struggles seemed more difficult than mine.

When I finally spoke up, I begin with “I only had a meningioma.” Right away, another survivor told me not to diminish what I went through — I had a brain tumor, a craniotomy, and have brain cancer!

The people on the NBTS call gave me a voice, they listened, and they convinced me to be my own advocate. I am grateful for their support — it was exactly what I needed. Now I have the courage to advocate not only for myself but for NBTS as well.

Since my surgery, getting involved with the National Brain Tumor Society has helped me remain positive. I am grateful for the resources they offer and hope I can help others by becoming an advocate for brain tumor research and funding. Ten years ago, I helped care for my sister-in-law, who lost her battle with a glioblastoma. I’m not sure she or her family were aware of the NBTS, but I think they could have helped her.

I have also been fortunate to have a “tribe of sisters” — women from all parts of my life — family, friends, co-workers, who were there for me when I needed them the most. They took me to doctor’s appointments, made meals, did grocery shopping, and more. I don’t know what I would have done without the women in my life.

Attending NBTS Events in D.C.

After participating in the NBTS support group, I knew I needed to give back to the NTBS community. I registered for the Race for Hope DC and Head to the Hill, and these events gave me something to look forward to in 2025.

I was cautious about fundraising and sharing my story on social media because I had kept my diagnosis and surgery very private. But I soon realized that if I didn’t share my story and my voice, I couldn’t help others as an advocate. It was challenging for me to travel to D.C. by myself, but once I got to the Race for Hope, I met other survivors and caregivers.

I once again felt like I had found “my people.” I had read the Head for the Hill materials online and prepared in advance, but it wasn’t until I attended the training session, met with advocates from throughout the country, and heard their stories, that I was ready.

I was pleased with our meetings: RI Congressman Gabe Amo was empathetic, engaged, and well-prepared for our meeting; Senator Jack Reed, a sponsor of the BRAIN Act, was amazing — generous with his time and vocal with his support. It was both an exhilarating and exhausting experience. I am hopeful we made some headway, and our efforts will be successful, but I also understand the challenges and uncertainty of the political environment.

Life Today

I still face many challenges — fatigue, memory, concentration, and other surgery-related issues — so I was unable to return to my executive marketing position in January 2025. The company could no longer hold my job, so after 33 years, I am officially “retired.” I was not prepared emotionally or financially to retire, so it’s been difficult to move forward.

I have a 6-month MRI follow-up brain scan at the end of May and am praying there is no tumor regrowth and I don’t have to undergo radiation — “scanxiety is real.”

What I wish people knew is that just because you look OK, doesn’t mean you are OK. I recently heard that brain injuries/tumors are called the “invisible disease” because a person’s physical appearance doesn’t reveal the existence or severity of their illness. I have tried very hard to stay positive, dress well, and make the appearance that I am “fine.”

However, no one knows how difficult it was to learn I had a brain tumor, undergo brain surgery, and take care of myself during recovery. When someone says, “Wow, you look great!” I understand it is a compliment, but it also diminishes what I went through and gives the impression that I’m the same person I was before the surgery, which isn’t true.

Today, I read/listen to books and watch YouTube videos to learn more about meningiomas, brain health, and diet. I walk my dog on the beach, exercise regularly, and am grateful for each day. I see a therapist to ensure I maintain a positive attitude. I reach out to friends and hope to travel some more to see more of the world.

I am grateful to the NBTS community for their support and hope to continue to work with them toward their mission of finding a cure and defeating brain cancer — once and for all!

TAGGED WITH: meningioma

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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.