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It’s time to come out of the closet about my brain tumor

Published on May 18, 2016 in Share Your Story

Ok, I’ve finally said it, “I have had surgery for a brain tumor.” I’ve been embarrassed about that for a long time.

I had horrible stabbing pains in my head for several years. I always joked with my best friend at work that they would find me dead at my desk one day from the “big one”. I mentioned it to my doctor, but he dismissed it and would occasionally ask me if I still had headaches. I tried explaining that they were not headaches, but pains in my head. Even my sister, who is a nurse, laughed and said that everyone gets those. One day I barely bumped my head on the sun visor. No cut, no bump, but a horrible headache that lasted for days.

When I began to feel nauseous, I decided to call my doctor. They sent me to the emergency room where a CT scan showed the tumor. I actually felt horrible for the doctor who had to give me the news. I thought, no big deal. Just tell me what I need to do about it. I saw a neurosurgeon a week later who told me I would be able to go back to my high stress, 80 hour per week job in eight weeks. Good enough. I would have jumped up on the exam table that day to have the surgery if that was possible. I had a totally optimistic outlook and just wanted to get on with things. I called my employer and told them I would be good to go at the beginning of tax season. I just didn’t want anyone to know because of the nature of my work.

The whole brain thing is kind of important when dealing with taxes and I didn’t want anyone to think I may no longer be capable. I was home 3 days after surgery and doing what I could to build up strength. I even felt pretty good. I was more than surprised when they called to tell me I had a grade 2 meningioma and they recommended radiation. Before I began treatment, I started having small seizures that led to paralysis on my left side and very slurred speech. It felt like I had a popcorn kernel under my tongue and couldn’t get it out. My doctors didn’t recognize that for a seizure until I was meeting with the oncologist and a very observant nurse said “doctor, I think she’s having seizures”. I was put in the hospital for a few days. In the meantime, my head was swelling with fluid. The doctors told me that that occasionally happens. Three days later my surgery site split open and I was soaked with fluid. Back to the hospital again for another surgery to remove and soak the bone plate and a pic line at home for two months. The staph infection inside the surgery site was actually causing the seizures.
That was 17 months ago. I decided to forgo the radiation and have MRI’s to monitor any regrowth. I can’t say it hasn’t been tough. I asked the nurse practitioner when I would be able to return to my old job. She said probably never, but as she was walking out of the room she laughed and said I could look into building bird houses. Wow! Nice. I wake up every morning and recite the first part of the Serenity Prayer. I was shocked that my memory wasn’t the same so I started doing crossword puzzles, which I was awful at at first! Now I do them daily, do countless brain games, exercise daily and am determined to return to my old job. I still don’t like to tell people I’ve had brain surgery. Actually, writing this is part of my self-imposed therapy. My husband said, “why do you always tell people you are doing fine when they ask?”. Because I am doing better today than last year and better today than yesterday. I have my next MRI scheduled in two weeks.The tumor can come back. The infection can rare it’s ugly head at any time, but I’m keeping my fingers crossed. John Wayne said, “Courage is being scared to death, but saddling up anyway!” I know that I am NOT going to build bird houses!

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

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