I grew up in Alaska, first in the Juneau area, then in Anchorage, during the 1964 earthquake—that was fun! My siblings and I spent most of our time looking for ways to entertain ourselves or hiding from Dad, who always had work for us to do.
My father was a handyman; he spent hours repairing stuff and making tools, toys, and furniture. Like him, one of my hobbies is woodworking. The thing about woodworking, as well as electrical engineering and photography, which I also enjoy, is that they require an incredible amount of resourcefulness, problem-solving, and attention to detail. The question you have to ask yourself, whether you’re holding a camera, a piece of wood, or a wire pinched between your fingers, is, “How can I make something well-defined and functional out of the pieces I have in front of me?” The solution isn’t going to be clear right away. You have to figure things out as you go, no matter how daunting. The same can be said about living with glioblastoma.
I was on a business trip one weekend, walking around and thinking about the important software release I was working on. Next thing I knew, I was coming to, flat on my back with my feet on the sidewalk, my upper body in the street, and lots of people talking above me, saying stuff I couldn’t follow. Then, it was a whole bunch of ER doctors saying stuff above me that I really couldn’t follow.
Apparently, I’d had a seizure. At the time, I thought it was just an annoying interruption, and soon I was back to normal—no memories lost or paralyzed limbs. The MRI results of my brain, however, showed a mass about the size of a golf ball behind my left eye. A “large tumor,” they told me. Okay, well, what’s gonna happen to me? I informed them that unless I was going to die tomorrow, I had work to finish and a whole group of people dependent on it. The doctors were confused by my reaction, as was my wife, Sue, and daughter, when they flew in to escort me home. But the logical next step for me has always been to assess the pieces in front of me, visualize my goal and sub-goals, and determine the most efficient way of reaching them.
Four days later, after an appointment with a neurosurgeon and additional MRIs, I underwent surgery to remove what we could of the tumor. While I was recovering, my glioblastoma diagnosis was confirmed. Neither my wife nor I had heard about this cancer before, so during the days that followed, we researched all we could and discussed next steps with my healthcare team.
While I was going through chemotherapy and radiation, I wasn’t fully in charge of my own schedule or driving myself because of the risk of seizures—my wife and daughters were. I had to put my hobbies on hold. I was ALWAYS napping—naps are great, but never before had they been a necessity. I was hardly eating—that was new. And having an aggressive cancer in my brain had me thinking about family and not work—that was a big change.
I transitioned my care from a medical team at a big university hospital to my doctors at home. I was feeling okay physically, and my MRI results consistently showed stable images—no tumor growth or infections. I wasn’t taking as many naps, and I was working full days. Everything that I had made an effort to pass onto Sue, like paying bills and managing the finances, rolled back into my lap. Life seemed almost normal! At this point, we were just watching and waiting to see how, and if, my health changed. Then my radiation oncologist asked if I’d be interested in trying a medical device called Optune® for the treatment of GBM and walked me through the risks and benefits. I considered it an opportunity to hopefully extend whatever time I had left. I think I’ve always had the same attitude when it comes to treatment: I have nothing to lose.
Because I live out of a backpack for work, it wasn’t a problem to adjust to the Optune backpack and get into the swing of using it. My goal is to exceed the recommended 18 hours per day on Optune. In fact, I’m in a little bit of a competition with one my friends who is also using Optune—right now, he’s winning!
I am still working full-time at a desk job and maintaining some of my hobbies. I teach classes at a woodworking store where I’m employed part-time. During the day I’m on batteries, and at night I use the power supply while I sleep. If I ever need to travel for work, Novocure will ship supplies to my destination.
Above all, I’m still feeling positive. It’s hard knowing what this disease can do, but the worst part is watching my family suffer. I have decided to make my time here as positive as possible, so those around me can feed off that energy.
When I look at the infant crib I crafted for my granddaughter’s birth, I can see each individual piece. I remember standing at my workbench in my basement, all the parts and tools laid out in front of me. With my best-laid plans, I got to work. I remember the look on my daughter’s face when I presented the crib to her. Small, meaningful moments like that make my life what it is—and make it worth living.
If my father taught me anything, it’s that no matter the shape, size, or amount of pieces in front of you, they will eventually fit together to create something special; it might just take time to find out how.