"I’m sorry…." I thought the doctor was apologizing for the long wait we’d had in the emergency room. After pausing a couple of seconds she came right out and said, “You have a brain mass.” My wife and I looked at each other in stunned disbelief. We could see the fear in each other’s eyes. “We have to airlift you to Harborview Hospital right away,” the doctor continued. I thought I was a dead man.
So began my journey into brain tumor land. It happened early one Monday morning in December 2002, when I was preparing for work. My family and I had arrived home late the night before. We had spent all day Sunday in transit after a wonderful cruise ship vacation. I was placing my nine-month-old daughter Shelby into bed next to my wife Val. I suffered what I can only describe as an intense head rush and a loss of strength and motor control in my left arm. I dropped my daughter onto the bed and almost fell on top of her. I didn’t know what was happening – I thought maybe I was having a stroke. Val knew I wasn’t joking around when I agreed to go to the emergency room.
I spent the next week in the hospital, undergoing CT scans, MRIs, EEGs, a spinal tap, and finally a biopsy. The rock in my head was a grade 2 oligodendroglioma; I’ve named it Oli. I was told that my tumor was inoperable due to its large size and location deep in the corpus collosum (the nerve center between the two hemispheres of the brain).
I was placed on anti-seizure medications and steroids. Over the next few months, the steroids caused me to gain 40 pounds. I also developed the typical moon face, buffalo hump, extreme leg weakness, and mood problems associated with steroid use. I’m sure that my friends and family were shocked by my appearance. Since fully tapering off of the steroids, I’m delighted to report that I’ve lost 30 pounds and am looking like my old self.
I elected to forego radiation in favor of chemotherapy. My treatments began in June 2003. I’ve been through twenty rounds of Temodar, which I’ve tolerated quite well. The tumor has been stable.
In a strange way, the brain tumor has been a positive event in my life, in that it has forced me to reprioritize things and put life into perspective. I now have a renewed awareness to live each minute of my life to the fullest and to concentrate on doing important things that will make a difference in the lives of others. Being human, I’ve got to admit that I still have difficult moments and sometimes lose perspective. I desperately want to see my girls grow up and I want to grow old with my wife. I know that excessive worrying about my condition won’t help anything, so I try to keep that to a minimum. Life seems so normal most of the time that sometimes I actually forget about my tumor. However, my monthly trips to my neuro-oncologist confirm that Oli is still lurking there.
Despite the unwelcome squatter in my head, I consider myself a lucky man. I have an incredibly supportive family, fantastic neighbors, the best of friends, and an amazing employer. I have many examples of how people have come to my support – even people I’ve never met. Thus far, I have lived a great life. I have experienced dedicated and unconditional love, and with a little luck, I will continue to experience many more years of the same.