A few of you asked if I’d share more about Ken’s brain tumor diagnosis in college (mentioned in this post), but I just didn’t feel like it was my story to tell, you know? There’s always a fine line and delicate balance when your story kind of spills over into someone else’s life, and for a weighty subject such as this, I wanted to pass the pen to Ken. (He’s the better half, after all. Trust me!) He was sweet enough to answer a few questions below, so read on to hear his thoughts on taking risks, staying intentional and what it’s like to live with a brain tumor…
Explain how you were diagnosed with an inoperable brain tumor in college.
I was home on Christmas break and sitting at the computer one night at my parent’s house when (this is hard to explain) what appeared to be the desk that I was sitting at turned at a 45 degree angle and I started falling off the chair. After I caught myself and sat myself back in the chair, I realized my vision had changed – the desk was still in the same position. Slowly, my vision started to realign but I was extremely dizzy and stumbled back to my parents’ bedroom, sliding down the hallway wall. I woke up my mom and she took me to the emergency room immediately.
The diagnosis in the ER was vertigo with a prescription I could take when I felt dizzy, but I never took the prescription because it wasn’t something I could feel coming on. As my vision episodes continued to happen throughout the rest of Christmas break, my doctor ordered an MRI that I went in for before driving back down to school. When i got into my dorm room, there was a message from my brother, telling me my dad was driving down to pick me up from school that night to bring me back home because the doctor saw something in the MRI. I called my brother back and he went into a little more detail that it could possibly be a brain tumor, and after hanging up, I had the first panic attack I’d had in seven years.
After my dad arrived and we drove back to my hometown, we arrived home to find my family doctor’s car in our driveway. It was about 11:30PM, so I knew there was a problem. When we came into the house, my sister and brother were on the living room floor; I could see in their eyes they’d obviously been crying. My mom was on the couch and my doctor in the recliner. My dad and I took a seat in the living room. My doctor explained to me that, in talking with a neurologist, they believed I had a glioma at the top of my brain stem – roughly the size of a large lima bean.
The next morning, we met with a neurologist (who unfortunately, had terrible bedside manner) and shared with me a dismal outlook for my future. He put the MRI on the lightbox, pointed to where the glioma was, and said he anticipated I had 5-10 years to live, no more. My family and I inquired about a treatment program on the horizon my father had researched throughout the night, but he arrogantly responded that it wasn’t an option worth pursuing. We quickly asked for a second opinion.
We were then referred to a neurologist in Indianapolis who turned out to be far more knowledgeable and much more pleasant to lead us in this journey. He was surprised that the previous doctor made such a bold claim for life expectancy given that he hadn’t reviewed a biopsy (which wasn’t administered because of the glioma’s close proximity to the brain stem). After years of MRIs and the neurological board in Indianapolis reviewing my case, they settled on a glioma diagnosis, but found that it wasn’t growing and shouldn’t be treated unless future scans reveal any changes. My symptoms of vision change slowly dissipated and was later thought to be attributed to heavy weight lifting and the pressure that caused the glioma on my brain stem.
Upon hearing the news, what was your initial reaction?
I experienced different reactions as I received more news from each specialist. The first night with my family doctor, I was filled with love and compassion from him and my family. When someone says you have a terminal condition, you see reactions from those around you that you wouldn’t get to see otherwise. It’s kind of like going to your own funeral without dying. At the same time, you don’t really believe you’re actually going to die. You know it’s a possibility, but we all sort of feel – in some strange way – that we’re invincible. The invincibility complex kind of takes over and all it leaves you with is a weird sense of opportunity. This might sound strange, but I always liked getting called into the principal’s office when I knew I didn’t do anything wrong, because it put me in an abnormal position to build a relationship with no consequence. And in a way, this was the same thing. It put me in an abnormal position to stretch relationships, but with no consequence. My diagnosis was given during a time where my faith in God was stronger than ever, so it’s like, even if – worst case scenario – the glioma kills me in five years, I still get to wind up in heaven. A pretty solid safety net.
How has living with a tumor shaped your life perspective?
It drove me to accomplish more than what is expected from a person my age. Everybody wants to leave their mark before they die, but they might not realize it until they’re 90 years old and on their deathbed. But being as young as what I was, I had the energy and opportunity to make the mark that I wanted to (and hopefully will continue to make those marks with the remaining time I have!). So I set myself on a path for the L.A. movie industry and that’s where I went. (Editor’s Note from Erin: In the next few years, Ken would go on to film a documentary in Africa, win the Academy of Television Arts and Sciences Foundation scholarship in Los Angeles and bring home a regional Emmy, so I’d say he left a bold mark indeed!)
It’s been over a decade since your diagnosis. Do you still think about it?
Every time I get a headache, yes. I rarely ever take medication because I’m analyzing how it feels in my head to see if it’s changed from the last time I had a headache. They all turn out to be headaches for the same reason everybody else gets them, but that would be one of the first signs if my glioma starts to grow. I’ve become a lot more of a hippie the older I get; I’m incredibly conscious in limiting the amount of carcinogens that enter my body – from leaving the windows open to let new carpet off-gas for a few weeks to not pounding fruit doused in pesticides to not microwaving my food. I’d say that’s a byproduct of someone saying, “You for sure have cancer in your brain.” I mean, everybody has the potential or the gene or the physiological make-up to acquire certain illnesses or diseases, but from what we know about modern medicine, my glioma can certainly be triggered by something environmental. So I do my best to be conscious of those triggers. No 20 – 30 year old wants to wind up in oncology after a fair warning shot of brain cancer and think, “Wow, I really didn’t try anything to keep this thing suppressed.” I realize daily that these efforts trickle down to Bee (the foods we eat, the health decisions we make), so as a direct result, the next generation of our family will be positively affected by this experience.
Were you ever hesitant to take leaps of faith (moving to L.A., getting married, having a child) knowing your condition?
Not at all. The only hesitation I would have had was if I’d idly watched my life pass by. That’s kind of a lame answer, like when you’re in a job interview and you’re asked “What’s your biggest fault?” and you answer “Working too hard,” but for me, it’s the truth. It makes me wish for all of us to be the best, hardest-loving versions of ourselves… daily.