The Brain Tumor Network is a gift that was there for me before I ever knew I would need them.
In April 2017, we thought we had the years ahead of us planned. Our daughter was in her junior year of college, our son was in his junior year of high school, and my wife and I were approaching our 28th anniversary. We had every intention to work several more years and then retire on our terms. That month I experienced the one and only symptom that would lead to a brain tumor diagnosis. While at work, my vision suddenly included all the colors of a painter’s palette appearing to melt before my eyes. That lasted about 10 or 15 minutes and was followed by a headache.
I made an appointment with my eye doctor and went to her office late that afternoon. She called me that night and told me to go to the ER to get checked for a stroke. There were no stroke indications, but I had a CT scan to rule that out. That scan revealed a “mass” or a “lesion.” Those were the first two terms in a new vocabulary that I would soon master as the diagnosis unfolded. An MRI verified a brain tumor. “Brain tumor” might be the hardest words a person will ever have to process.
The Sunday after my diagnosis, the sermon in church included the idea, “If you want to make God laugh, just tell him your plans.” Ours had certainly changed. Suddenly, a whole new reality began for my family and me. We were essentially stumbling without direction. Fortunately, having heard of the Brain Tumor Network from a friend whose husband had a brain tumor, my sister pointed us in the Brain Tumor Network’s direction. The team answered the phone, returned calls, sent emails, investigated options, and kept my family updated. They worked on my behalf, just like motivated family members. The Brain Tumor Network found a study that I qualified for and helped me get into one of the top hospitals in the world. I believe my surgical, radiation, and oncology teams were the best combination possible. Fortunately all were located close to home, and that has helped keep family life as normal as possible. Their navigation kept our family moving forward. Our daughter is now a medical student and our son attends a college that will lead to a military commission.
The Brain Tumor Network stopped us from stumbling along and navigated us to where we needed to go. They have remained companions along the way, with expertise that I am certain kept me alive. Perhaps tenacity and empathy best describe how they help patients navigate beyond those life-changing words, “You have a brain tumor.”
We will be forever grateful for the Brain Tumor Network.