I was 31 when things started to feel off.
I began experiencing focal onset seizures, which affect only one side of the brain and can impair your movement, your level of consciousness and your awareness. On top of this debilitating symptom, I also started having visual disturbances. I found myself getting lost in my own house; my bedroom was not where I thought it should be and I didn’t know which direction to turn to find it. At one point, I also got lost on my way to the grocery store. My world became disoriented and unfamiliar.
I went to the emergency room to find out what in the world was going on. That’s when they told me, “You have a brain tumor.”
One tumor resection surgery, two different types of oral chemotherapy in pill form and nearly ten years of remission later, my time of survivorship came to an end.
In the middle of the night, I woke up surrounded by EMTs. I had a seizure severe enough for my husband to call 911. After that scare, I started experiencing more and more focal onset seizures. These seizures caused me to feel this burning sensation that traveled from my chest into my throat. I also smelled phantom odors, like rotting meat, that weren’t really there.
As these seizures occurred more frequently, I was not surprised when my doctor told me 90 percent of the tumor had grown back.
The tidal wave of low emotions I experienced during my first brain tumor diagnosis came rushing back: anger, grief, powerlessness and discouragement. There was nothing to do but undergo another surgery, my second brain tumor resection.
And still, the tumor persisted.
Not even a year later, my care team advised I should have external beam radiation as well as a second round of chemotherapy.
Radiation treatment is not a pleasant thing. I experienced everything the medical professionals warned me of, including extreme fatigue.
And then there was the dreaded hair loss.
Eleven years after I was first diagnosed with a brain tumor, I stood crying in front of my mirror as I pulled clumps of hair out of my head, all the way down to the scalp. I knew this was a common side effect I would likely experience. I guess I just had no idea how much hair I would lose. I had long, beautiful hair; losing it was equal parts humbling and scary.
I try not to take my condition and everything that goes along with it too seriously.
Hair loss can cause a lot of damage to your self-identity and body image. Different types of radiation and doses cause varying levels of hair loss. It’s a possible side effect for any part of the body being treated for cancer but is more common—and often more severe—when treating the brain.
In my case, I had direct radiation to the head. It was so severe, my husband and I now joke with each other about how he would follow me around with a vacuum, sucking up the wads of hair falling from my head to the floor.
So, when my tumor made yet another appearance in 2019, I was relieved to hear that my doctor had a new kind of therapy he’d like me to consider: GammaTile therapy. He said for people with operable, newly diagnosed malignant and recurrent intracranial neoplasms, this was a treatment option with a track record of success.
Unlike external beam radiation, GammaTile is a Surgically Targeted Radiation Therapy (STaRT) that delivers radiation therapy right when and where it is needed while limiting side effects. GammaTile is placed directly at the site of the tumor during brain tumor removal surgery. The device is designed to protect healthy tissue and eliminates both hair loss and repeated radiation treatments.
I was the first patient in Kansas and one of only 11 in the entire country to receive the new treatment. If my neurosurgeon, Dr. Clough tells me to jump, I jump—so I jumped on board. Dr. Clough and I have been through this whole journey together.
Right before my surgery, I thought to myself, “I ought to play a joke on this guy if I’m going under the knife again anyway.” I went to a barbershop where they shaved the words “Cut Here” on the back of my head with an arrow pointing to the incision site. I try not to take my condition and everything that goes along with it too seriously. If I do, I feel like I’m setting myself up to stay angry and discouraged, cycling through my lowest emotions. And that’s just not me.
After receiving GammaTile therapy, I didn’t experience severe hair loss or extreme fatigue. It was my best and easiest recovery to-date, helping me get back to my favorite state in life—hitting the ground running!
Since then, I’ve had two MRIs and my last scan in November of 2020 showed no evidence of tumor progression. I later asked my doctor how he thought the surgery went, and he said, “I’m glad you gave me instructions. I knew exactly where to go.”
