I have a question and see if this has ever applied to you: Have you ever felt that you’ve failed at something?
I mean, failed so badly on every level that it seemed hopeless? I did.
I was playing horseshoes at a BBQ on May 9, 2009, when I lost all strength and coordination on my right side out of nowhere. It scared me enough for me to go to my doctor two days later. He sent me to a neurologist, who ordered MRIs for my head and neck. These MRIs showed a huge brain tumor the size of a cheeseburger.
Discovery of an Unknown Brain Tumor
I was diagnosed with a meningioma, a non-malignant, but – in my case – a very invasive brain tumor. It hit critical mass at the BBQ. It pushed my brain down as far as it would go and pushed my skull up 4cm. My doctors predicted that it had probably been growing at least 10 years unbeknownst to me!
I was immediately put on medication to relieve the swelling and pressure on my brain and to prevent a seizure that was imminent. The seizure could have been so severe that it would have killed me, or I might have slipped into a coma that I never would have woken up from.
Brain Surgery with Two Neurosurgical Teams
On June 15, 2009, I was embolized, a procedure that inserts small particles to cut off the blood flow to six large blood vessels feeding this beastly tumor. This was done during an awake surgical procedure. The next day I had over ten hours of surgery performed by two neurosurgery teams that removed the entire tumor. Even though they removed the entire tumor, I was paralyzed from the waist down. The collateral brain damage from this “benign” tumor was on my motor skills and mobility. My skull was also compromised, so I now have a huge titanium plate on a third of my head.
Wait and See Post-Treatment
I spent two days in the intensive care unit. Little by little, I was removed from the many monitors keeping watch over me. I started eating better, but my body was so weak I really could do little more than feed myself and shave but with enormous effort. I had a bit more mobility in my upper body, but very little strength.
I was in the hospital for eight days until I was stable enough to be transported to a rehabilitation facility to work on physical and occupational therapy. Over the next few days, I learned more about what happened during my surgery. The surgical team believed they removed the entire tumor. It was much larger than they first believed it to be. The team of doctors said it was the largest brain tumor they removed in the last 30 years. It was one for the record books.
Not only did the tumor and operation compromise my skull, the resulting paralysis was something they had not seen before. It was unknown how I would recover. The brain damage made any prognosis impossible and uncertain. Either the brain would find new pathways around the damage to connect to my lower body or not. So, it became a ‘wait-and-see’ process.
I typically do not have patience, so this was not good news. I felt that I had failed completely. I went through some very difficult moments in the next few days. To come to grips with this new reality, I had an epiphany of sorts. I had to do whatever it took to be whole again. I told myself that I had not failed.
Creating a New Normal
I spent months in rehabilitation to learn to walk again as new connections were made from my brain, my spine to my lower body. My therapists are miracle workers in every sense of the phrase. I could now walk, drive, run my own business and live a relatively normal life again.
It took was five words to bring me to my knees including those of my loved ones and friends…. “You have a brain tumor.” These words could shake even the most courageous to the core.
Experiencing Brain Tumor Recurrence
In 2011, an MRI discovered a small meningioma that still remains. It is continuing to behave and remains stable.
In 2017, another routine MRI revealed I had a third brain tumor, located on the right side of my head. It robbed me of a good portion of my hearing all of a sudden. It had a good chance of rendering me completely deaf because the tumor was wrapped around several nerves in my brain. This time I was not driven to my knees, I was as ready as I could be. I had Gamma Knife Radiation Surgery. Although the tumor swelled to a greater size, tests show that it was, indeed, dying but still remained in my brain. It had stopped growing.
Leaning into the Arms of Hope
Hope is real. Hope is a tangible thing you can wrap your arms around. Hope doesn’t always mean you’ll survive, maybe just for as long as you can, or as long as it takes.
I’m often asked if I wished I could go back in time before experiencing multiple brain tumor diagnoses and treatments.
My answer is no, I wouldn’t. Want to know why? First, you can’t go back. Second, because this journey made me a more empathetic man: a better father, husband, son and friend. I met so many amazing people on this journey with whom I would never had the opportunity to meet otherwise. I think that would have been a crime in and of itself. And, finally, maybe, just maybe, I had to go through this — to bring awareness, support and be the voice for those who don’t have a voice, so you or someone you love at some point and time, doesn’t have to…
Game Changing Experience
I have lived through several brain tumors now, so I am part of an exclusive club of people who have of had brain tumors. Unfortunately, it’s a club no one chose to be a member of. But this experience is a game changer for me. I started helping others on their brain tumor journey, just like the ABTA does for so many!
Sharing my story at the ABTA National Conference is one of many opportunities to help others. I also started a support group on social media, Brain Tumor Talk, to give others in a similar situation as I was, a platform to surround themselves with others who “get it” so they wouldn’t feel alone. I also wrote a book, “How Horseshoes Saved My Life” and became a volunteer mentor with the ABTA.
I formed a corporation and am an award-winning business coach and take many of the lessons and strategies I learned and continue to learn from my brain tumor journey and pass them on to business owners, professionals and leaders to help them level up, find their way and get unstuck.
One of the most important lessons I learned while still enduring this is to surround ourselves with people who get it, that hold our hands as we walk this path, if even for a little while, and sometimes that’s enough, to not let someone walk alone!
To quote author C.S. Lewis:
Friendship is born at that moment when one person says to another:
What! You too? I thought I was the only one.