Family + Kids

Living With A Tumor

by erin |

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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.

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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.

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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!)

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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.

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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.

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  • Wow, what an amazing story. I’ve been following along with Erin for years (since I started blogging in 2007). I knew you guys were special and now I know why. Your faith and joy in life shines brightly. Thank you for sharing such a personal and moving part of your life. God bless you guys.

  • oh wow, what an incredible, wonderful perspective! My daughter has a brain lesion, which just gets monitored by an MRI each year, to check for changes, but so far has been stable. I don’t know if I have dealt with it with the same grace that you have, but hearing your story, Ken, makes me really happy to see evidence of a life being so very well lived. Congratulations on a life so full of love and faith and strength. I really appreciate you sharing this part of your story.

    • Ahhh, I’m so sorry to hear about your daughter’s brain lesion, Julie. And I know that I certainly didn’t deal with every moment in grace, so I trust your reactions were completely normal (whatever normal means, ha!). Sending lots of prayers your way.

  • Hi Ken! So great to hear his side of this story. Thanks for passing the pen Erin! It’s really such a great testimony to what a hidden blessing scary medical things can be. Much love to you guys!

  • It is one of the greatest privileges of my university experience to work with and know both of you. My hope is that you will continue to shine the Light brightly and love the life you’ve been given. Press on friends!

  • Hi Ken. Thank you for sharing your story. And, thank you, for continuing to live your life to the fullest and be an inspiration to the rest of us.

  • WOW. This is incredibly touching and open. Thank you Erin & Ken for sharing. Huge hugs all around. You two have built a beautiful life amid what to some others would be crippling news or circumstances. Wishing you both all the happiness in the world!

  • Ken, thank you for sharing your story. It’s strange to be a stranger across the country who has an internet-based acquaintanceship with your wife, and feel so much emotion for you, too. Sounds like you’re living the life (emphasis on LIVING) in the best possible way.

  • Thank you so much for sharing your story. It just confirms my belief that life is what you make it and living life to the fullest. Keep on smiling!

  • I always felt a connection to your blog but couldn’t quite put my finger on what it was. I thought it was maybe a Midwest thing, or the fact that we both had our first children (a daughter for me too!) within a few months of each other, or maybe just your lovely writing pulled me in. But now, I can see we are kindred spirits in loving someone with such a unique, and beautiful view on life, having viewed it from a place of real mortality. My husband is a 2 time Hodgkins Lymphoma survivor. We are so blessed that he has had amazing health for the past seven years(!), and that to the shock of all our doctors, we’ve had two beautiful, happy, healthy daughters naturally. Every single day we take in and share our gratitude for his health, and our life together. I feel so lucky to have such a personal reminder to shake off the small things, and let go of the bad days. I’m So very glad that Ken’s health has prevailed and that you have had the opportunity to build such a beautiful life & family together. I wish the two of you so much continued Joy!!! Thanks for sharing such a personal piece of your lives! Xx

    • Oh Julie – what a blessing your husband’s health must be! Such an amazing story!!! Thank you for sharing this deeply personal aspect of your lives – I feel the same way you do. Perspective can be the greatest gift here on earth. :) Praying for continued health for your husband and many, many sweet moments for you and those joyous daughters!

  • Hi, my almost-26-year-old son Michael was diagnosed with a brain tumor — oligodendroglioma — 3.5 years ago, just 10 days after college graduation. He had a grand mal seizure, the first in his life. He had planned to go to serve for 2 years in the Peace Corps in Africa (and then on to medical school), but when that was no longer possible, he shifted gears and went for his master’s degree in biomedical science. This past May, he received his master’s and in August started medical school. He’s been treated for 3 years on and off, and last month had a number of seizures once again, indicating new tumor growth activity. Next week, we’re headed to Duke’s brain cancer center to discuss the new growth and treatment options. Throughout this ordeal, Michael has been strong and positive, refusing to let the tumors derail his lifelong dream to become a doctor. It was so helpful to me to read about your Ken’s feelings going through his own health issues, and I want to thank you both for sharing them. As a mother, I often wonder what my son is going through, and Ken’s story helped provide some insight. May you and your entire family enjoy many years of health and happiness together… and may the doctors and researchers find cures for brain cancer very soon.
    XOXO Leslie

    • Oh Leslie – I’m so sorry you’re in the midst of this journey with your son, Michael. I can’t imagine how difficult it must be to watch your child endure such a difficult path ahead, so I’m grateful Ken’s story helped shed a bit of insight re: how he might be feeling. Sending prayers your way – for Michael’s healing and for his mother’s continued strength. :) God bless you!

  • Dear Ken and Erin, Thank you for posting this and helping us all to realize the gift and the opportunity of each day. Bee is so lucky to have you as role models as you journey through the landmines of our materialistic society, time restraints, and so many other distractions of this life. You are instead teaching her, (and us) the joys of simple living, the importance of our time together, healthy eating, and knowing that miracles do happen! So thankful that you got that second opinion from a positive physician!

  • You touch the lives of people you probably wouldn’t think about. It’s a blessing to have crossed your path Ken.

  • Thank you, Ken, for sharing your story – and Erin too, for using this platform to share such a personal journey. I think many people will be touched, influenced, and encouraged by the words in this post. You two are brave, awesome souls, and Bee is a lucky girl to be raised by you. xox

  • This is the first time I heard this story. What an amazing story! Thank you both for sharing and inspiring others to live life to the fullest!!

  • I thought I couldn’t love/respect/admire you more and then I read this. You both have such a wonderful perspective towards everything and such courage to embrace life completely . So incredibly inspiring. I’ll always always support you.

  • Thanks for sharing your story, it’s very inspirational. Glad to know the glioma stopped to grow so you don’t need to have to have a treatment.

    My brother was diagnosed with testicular tumor in January, same as here: all of a sudden, broke in tears, and all the family and friends surrounded him with love and support. He went into surgery soon, and now he’s fine. But he is too young. It makes you think: what if the surgery went wrong? or what if we didn’t discovered the tumor soon? with all his life to live yet!

    Living that situation has made me feel more conscious of the “time I’m wasting” or time I’m procastinating, or the way your life could turn in a second.

    Your story could serve as an inspiration to all of us, to pursue our dreams, and live our live to the max!

    PD. That first doctor, I hope he doesn’t talk like that always…I personally think that positive mind helps a lot to cure illness (apart from doctors, medicine, and science), but a positive mindset, a will to live is SO important. One thing is to tell the truth, another is to bury all the options and hopes.

    • Ahhh, I can’t speak for Ken, but I couldn’t agree more, sweet Sara. So glad to hear your brother is doing well! :) Thank you for sharing your story!

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