Receiving a brain tumor diagnosis is a traumatic experience. It’s terrifying to hear you have something growing in your brain. Everyone struggles with anxiety to some extent in that situation. While each person’s concerns and actual experiences will vary greatly, we all battle fears and worries.

When I was first diagnosed, I felt like I really wanted the tumor removed for peace of mind. I did look into radiation. I included many different pieces of information in my decision matrix. However, I felt that knowing the tumor was gone would alleviate a chunk of my anxiety. At the time, it seemed very straightforward- either you have a brain tumor or you do not. I believed it was a black and white situation or a yes/ no answer.

With this mindset, learning that I would be monitored for at least ten years after surgery for possible regrowth of the tumor was daunting. Fearing regrowth preyed on my tranquility. I felt that I made it to the finish line only to have the goal moved further away. I struggled with the uncertainty.

I am now almost eleven years post diagnosis, and I have learned so much in that decade. I’ve really expanded my mindset. I have a much larger perspective on the acoustic neuroma experience, in part from getting to connect with so many fellow acoustic neuroma warriors.

I have learned that it truly isn’t applicable to treat my health as black and white. I have realized worrying if there happen to be any tumor cells present at all isn’t helpful. Instead, it is more useful to think about my quality of life and how I am feeling day to day. It isn’t that either I have a brain tumor and its a huge problem or I am fine. It’s a much more nuanced situation.

Like most people diagnosed with an acoustic neuroma, I probably lived with my brain tumor growing for a decade or longer prior to my diagnosis. These tumors grow slowly, so typically you have them for quite some time before you realize they are there. I lived a full and wonderful life between 17 and 27- finishing high school, attending college, getting married, having my first baby. There was a lot of great moments while I had my tumor.

In the eleven years since I had my surgery, I have continued to have a very full life. The first year and half post brain surgery wasn’t my favorite time, and I have had some other unrelated health struggles. Regardless, I have had many wonderful moments and opportunities in that decade- having my 2nd baby, growing my family business, taking up my volunteer mantle, and becoming a writer (can I actually call myself that? 😆). All of this life I have been living with possible brain tumor cells left (the surgeon thought he removed it all but it isn’t possible to be 100% certain) and/or with the possibility of regrowth hanging over me.

While I would happily give away my hearing loss in a hot second and I would never wish brain surgery and recovery on anyone, I am aware I have a good life. And having or not having a tumor in my head doesn’t define whether life is good. I don’t want to waste my time on being anxious about something that may or may not ever happen or be an issue when I could be enjoying life.

So instead of feeling fatalistic or like I failed in some way if I have regrowth, I think about how much quality of life I have now. I feel grateful that how my first treatment was successful in controlling the tumor and keeping it from continuing to cause neurological damage. I keep in mind how slowly the tumor grows, which means I would have time to make decisions. I also focus on how there are good treatments for acoustic neuromas.

All of these small differences of thought can make a large difference on how I feel. Just small shifts in my thinking can take something that feels overwhelming and make it feel more bearable. Some days I lose the battle with my thoughts and anxiety nibbles at my heels. But often, these changes in my thinking allow me to stay present and continue to enjoy my life rather than wait in misery for the other shoe to drop.