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What I’ve learned from my Brain Tumor

May 26, 2020

“You were right, you have a brain tumor,” is not quite what you want to hear from your doctor. Usually I like being right, but not this time. I desperately wanted to be wrong, but in the back of my mind I knew. 

Twelve years ago, I went to an ENT for the first time due to one-sided hearing loss and severe ringing in my right ear. They couldn’t find anything wrong and sent me home saying that if it returns, I should go back and have it checked as it could be “something more serious.” I went back three times and every time showed fluctuating hearing loss. But the doctors didn’t seem worried, so I didn’t worry either. 

The hearing loss became a part of my personality. My family and our team at Freedom Interiors intuitively learned to cover for me; give me a heads up when somebody said something I missed, answer a question directed at me during a loud networking event, or graciously tell someone “she’s half deaf” when it seemed that I was rudely ignoring a remark I just hadn’t heard.

Then one day last year I came across a description for a rare, slow-growing, benign brain tumor that grows on the hearing and balance nerve called an acoustic neuroma. I had an unshakable certainty that I had one. It checked all of the boxes and explained all of my symptoms, as well as occasional dizziness spells and a clumsiness I had accepted as a quirkiness. 

I went back to the doctor’s office, pulled out the Wikipedia entry for the tumor and said: “I think I have one of these, would you please look into that?” The doctor seemed skeptical, but another hearing test confirmed the hearing loss, so an MRI was ordered “just in case.”

And there it was, 2.3 cm, the shape of a pear, growing on my hearing and balance nerve. Though acoustic neuromas are benign tumors, they can grow large enough that they can push on the brain stem and become life threatening. 

Mine was sitting in a cavity barely tickling my brain – like the annoying sibling that sticks a finger a half-an-inch away from your face and snarkily proclaims – not touching! As long as it stayed that way and I didn’t mind the symptoms, it was okay, but if it continued to grow the consequences could be very serious. And every doctor told me there was only one person who could decide the next step for treatment: me.

For the last ten years I’ve been growing a small business and learning to lead an exceptional group of individuals to achieve common goals. I didn’t know it at the time of my diagnosis but dealing with a brain tumor has taught me more about leadership than I ever could have imagined.

The first lesson is that, as a leader, it is okay to be open and vulnerable with your team. It is also okay not to have all the answers. I made a choice to share my diagnosis with our team: I explained the tumor, treatment options, and was honest when I told them I was afraid and didn’t know what the next step was. But I chose to include them in my journey of discovery, and they remained calm and supportive during the following few weeks as I researched treatments options and medical teams.

Another important lesson was on the importance of deciding. I can suffer from analysis-paralysis. I gather data and weigh options endlessly because I want to make sure my decisions are always the best they can be, which has delayed important decisions to the detriment of my goals. With the tumor, it was my responsibility to decide whether and when to have one of three types of surgery or radiation therapy, and which team of doctors I’d trust my life with. I felt so unqualified to make these decisions! It seemed like there was no right or wrong answer, and I had to choose nonetheless. I could have spent a lifetime researching and not knowing what to do, while the tumor kept growing until I had no choice. 

For a few weeks, it was as time stood still hinging on what was going to happen next. It was with the resources available from the Acoustic Neuroma Association and connecting with brain tumor survivors like Shanna Adamic, who openly shared their feelings and experiences, that I was able to choose my path. The moment I decided on a course of action, a huge weight was lifted off my shoulders. Making a decision gave me back control of the situation. For better or worse, surgery was scheduled, and a slew of other decisions could now be made based on that.

The final lesson was that I had to lean on my tribe and learn to share the load. I’m used to doing things on my own and being self-sufficient, but running a company while recovering from brain surgery was just not possible – believe me, I wanted to. It should come as no surprise that our team stepped up to the plate. With input and guidance from my HEMP mentor, I established a Leadership Team that, months after my surgery, continues to blossom and grow Freedom beyond what I ever could on my own. 

I had surgery at UC San Diego Health on December 10.  I had never been so mentally exhausted as I was the weeks following surgery. Thinking was a strain. I had to relearn how to walk and do basic tasks on my own, like taking a shower. It took some time, but I felt ready to start easing back into work about four weeks after the surgery. I was only able to focus on my recovery because I trusted our team to keep the company running smoothly in my absence – and they did.

May is Brain Tumor Awareness month. I didn’t choose this cause for myself, but I’m grateful for being on the other side of recovery and for all the lessons this journey has taught me. I feel fortunate and my heart goes out to those who are diagnosed with a brain tumor, especially those who don’t have all of the options I had. If that’s the case with you or someone you know, I’m here to serve as a resource and support. 

If you want to help, you can join me in supporting Head for the Cure’s Team Kris Campbell’s goal of finding a cure for brain tumors.