My Brain Tumor Took Part of My Ability to See, But It Hasn’t Taken Away My Perspective

About a year before my diagnosis, I was on WebMD.com using the symptom checker when the term “brain tumor” first appeared on my radar.

“Of course, WebMD thinks I have a brain tumor… Those are super rare and when hasn’t WebMD jumped at the opportunity to make my medical anxiety worse?”

It was the beginning of COVID, and we were selling our house so I put it out of my mind. Fast-forward a year later, and my PCP was asking me questions about my overall health: “How have you been feeling? Do you have any health concerns?”

Well yeah, actually… About 5 months earlier, my periods just stopped. She urged me to have some labs done, and sure enough, my prolactin came back pretty high. My PCP: “Let’s order an MRI… You might have this tiny benign tumor called a prolactinoma, and it’s treatable, but we need to see if that’s what’s causing this before we can treat you for it.”

It was St. Patrick’s Day, and I knew when I left my MRI appointment that the technician had seen something he wasn’t expecting: “So, what symptoms have you been having? Where have you been having them?”… “I’ll make sure we get these pictures to your PCP as quickly as possible.”

At about 7 p.m. that same day, I got a MyChart notification that my MRI results were released: “A MASS MEASURING 3 CM ENCASES THE OPTIC NERVE AND CAROTID ARTERY; THE PITUITARY GLAND IS POORLY DIFFERENTIATED FROM THE MASS.”

My vision had been gradually getting worse over the past two years, and after two brain surgeries, it was getting worse yet. I ended up having prisms put in my glasses, and my neurosurgeon cautiously suggested radiation. Initially, I put it off, but after my vision became worse, I opted to go through with it. Two weeks into treatment, my double vision was gone.

I’m very fortunate that radiation was even an option for me, and it was only because my surgeon was skilled enough to reduce the size of my tumor to the point where it could potentially be effective. My tumor has invaded my cavernous sinus, so there is no way to remove it entirely with surgery.

My brain tumor has taught me that I have two choices: 

1. I can either live in the perpetual fear that my tumor will cause irreversible blindness and/or cut off my carotid artery, eventually causing me to die, or…

2. I can choose to let hope carry me farther than fear ever could.

My neurosurgeon has made it his life’s work to help make sure that people like me get to live their best and fullest lives; how incredible is that? Obviously, it would be ideal not to have a brain tumor, but if you’re going to have one, it’s hard to be luckier than I am. I’m much more interested in finding out what my tumor can’t stop me from doing.

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