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On August 1, 2024 I was rushing down the stairs and missed the landing, falling down 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 cat 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.
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 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.
I have since retired from my job, as I was unable to return to my executive position due to fatigue, memory, and other issues related to the surgery. 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 do some traveling to see more of the world. I attend the National Brain Tumor Society monthly zoom meetings and will attend the NBTS conference in May to become an advocate for brain tumor research and funding.
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.
I will attend the NBTS conference in Washington, DC in May. It will be my first time traveling alone, but I know I will have support once I get to the Conference. I will participate in the Head to the Hill Walk on Sunday, attend advocate training on Monday, and tell my story on Tuesday. Senator Jack Reed, from my home state of Rhode Island, is a sponsor of the BRAIN Act, so I look forward to thanking him or members of his staff, for his support.
I also intend to reach out to my local newspaper and share my story. I have been hesitant to become public with my story, but since May is Brain Tumor Awareness Month, maybe I can help someone else who may have symptoms that have gone undiagnosed. I may also be able to gain financial support for the NBTS.
I think the one thing that 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.
