As humans, we all want things to be black or white. We are looking for yes or no answers, not maybes. We feel most comfortable with certainty and structure. However, life doesn’t always play by those rules.

When I was first diagnosed with an acoustic neuroma, I craved certainty and assurance. I felt adrift in options and maybes and terrified of how to make my choices. While it wasn’t my first ever foray into the world of health problems, it was by far my most serious diagnosis.

There are so many moments of uncertainty in an acoustic neuroma diagnosis. There is deciding whether to watch and wait or do treatment. For some, that can be a really long period of waiting and not knowing. For others, they know they need to do treatment, but now they have to sort through the decision tree of radiation vs. surgery. Once surgery or radiation is chosen, you still have to pick which method of surgery or radiation. This journey is rife with living without certitude.

I chose to do surgery as my treatment for a variety of reasons, including the fact that my tumor was on the larger side at 3 cm. Depending on the study and doctor, the cut-off for safely being able to radiate a tumor is somewhere in the 2.5 cm or 3 cm range. However, a piece of my decision was thinking that I would feel more secure knowing the tumor was removed rather than radiated and still in my head. I wanted to feel like I could put the brain tumor behind me.

In the ten years since my diagnosis, my perspective has really changed and grown. I have realized that something as complex as an acoustic neuroma diagnosis isn’t as simple as a yes/no. Even with total tumor removal, you are followed with MRI scans for 10 years. While in many ways, I have moved beyond my brain surgery, in other ways, it still walks alongside me.

I have realized that my goal and perspective needs to not be that the tumor is zero, but rather that my quality of life is as high as possible. I need to make choices and put my focus on how to enjoy and live fully, rather than to waste time worrying about what may go wrong later. 

A great example of this is illustrated by a surgical choice. It can be tempting to feel like the goal for surgery needs to be removing 100% of the tumor. However, removing all of the tumor can at times lead to damage to the facial nerve or other important structures. Since these are non cancerous and slow growing tumors, it is a much better idea to not remove all of the tumor, and instead preserve facial nerve function. Often, even with slivers of tumor left behind, the tumors do not grow again. If they do, radiation is always an option to arrest growth.

Honestly, sometimes the anxiety in times of uncertainty can be the largest impact in your day to day function. It can be more impactful even than the tumor symptoms. It is important to prioritize your mental health and take care of yourself. Use coping mechanisms that you find helpful, whether that is journaling, exercising, connecting with friends, or getting outdoors. Consider therapy or medication if you are struggling.

Also, while the presence of your tumor may be outside your control, your mindset and thoughts are things that you can change. I find it helpful to put energy and focus into the things that I can do something about. It helps me to feel productive, and a positive mindset has been scientifically proven to be beneficial.

In the end, bodies have problems and break down. It’s hard knowing that you have something wrong with your body. It’s difficult to make decisions about what will be the least awful path. It can feel like a huge gamble, playing the odds of when to get treatment vs. when to hold. But life comes with no guarantees. There will be hard things and beautiful things for everyone. Knowing you have this challenge upcoming may be difficult, but try and see this foreshadowing as a gift to plan and have perspective rather than as a rain cloud overshadowing your life.