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. It makes sense that your fight or flight response gets activated.  Each person is going to have their own individual worries, but everyone definitely feels the pressure of anxiety.

When I was first diagnosed, I felt like I really wanted the tumor removed for peace of mind. I did look into radiation and include many different pieces of information in my final choice. 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 on a quiz.

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. I am going to share with you what I would tell me of eleven years ago.

I have learned that it truly isn’t applicable as yes/no for brain tumor or not. Instead, it’s better for me to think of it as a spectrum. On one end of the spectrum is a large tumor with lots of symptoms and many interruptions for daily life. On the other end of the spectrum is zero to tiny amount of brain tumor and minimal impacts from the tumor interfering with life.

I want to clarify that I am not saying everyone ever has a brain tumor or that everyone will experience regrowth. Nor am I saying that small tumors always have less symptoms or that once a tumor is removed there will be no symptoms.  Symptoms and side effects really march to the beat of their own drum.

I used to think I could relax and life would be good if I just knew the tumor was gone. I correspondingly thought that regrowth would be a terrible thing that would upset my life horribly.  But I now see it differently. Instead of focusing on whether there is any tumor there or not, I focus on my quality of life and how I am feeling. If my quality of life is really good, then I don’t want to waste this time on being anxious about something that may or may not ever happen or be an issue.

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 wonderful times and opportunities also 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) and/or 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. Instead, it is a complicated matrix of trying to feel good and be well.

I also want to say I am not advising against treatment. I think treatment is extremely important and definitely recommend it. However, there are times to be in watch and wait and in those times (or any time of waiting) knowing the tumor is in your head can prey on your thoughts.

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 success about how my first treatment worked well to control the tumor and keep 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 the anxiety continues to nibble at my heels regardless, 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.