I had symptoms for more than a year. It started with spontaneous bouts of hiccups. Whenever I ate or drank I would start hiccuping. I was forced to stop eating or drinking until they passed. Sometimes the hiccups would start for no apparent reason. If I rolled over in bed while sleeping I would be woken up by hiccups. They came any time.
In August of 2003, I finally went to see my doctor. He sent me to a gastroenterologist because he thought it might be stomach related. It took a month or so to get the appointment and the gastroenterologist treated me for acid reflux for another few months. In the meantime I was traveling around the world on business and burning up more time. Around Thanksgiving, I started to have difficulty swallowing. My ears started to ring and I had this strange sensation that felt like my head was in a bucket of ice water. Headaches started also. I went back to my primary doctor in late January and told him of these new symptoms. By now I suspected that something was seriously wrong inside my head, but I didn't want to think tumor. My wife and I actually joked about it being a tumor.
My doctor finally sent me to a neurologist on the Monday before Super Bowl weekend. On Wednesday that week I had an MRI. The neurologist called me right away with news that they had found an egg-sized tumor attached to my brain stem and in the forth ventricle. That Friday I saw a neurosurgeon at Lahey Clinic in Massachusetts. The doctor couldn't schedule surgery for another 4 weeks. My headaches got worse. I had vertigo and difficulty walking and I started to lose the ability to swallow. The hiccups got so bad that at one point I hiccuped every 3 seconds all day and all night until a medication became effective. I started losing 2-3 pounds a day and I am (was) a jogger with virtually no body fat. I was convinced that I was going to die within a few weeks and surgery was the only hope. I was circling the drain pretty fast. Days before surgery, I just about couldn't move. Walking was nearly impossible. I was semi-lucid most of the time and beyond the ability to take care of myself. My wife, Barbara, literally kept me alive by conferring with doctors and pharmacists and managing the medications. We had our will updated and we prepared for the worst.
On February 24, 2004, I had nine hours of brain surgery with complete resection of an ependymoma. It measured 4 X 3 X 2.5 cm. The recovery was not much fun. Among other things my brain could no longer control my blood pressure. If I simply sat up in bed I would pass out. This lasted for a few weeks. I still couldn't swallow and wasn't given any nourishment for more than a week. I had lost more than 40 pounds. They eventually inserted a feeding tube in my belly just above my belly button. The nerves that controlled my tongue were damaged and my speech was nearly unintelligible. I could not walk at all due to a combination of factors including low blood pressure, vertigo, loss of motor control and sensory function on my entire right side, and loss of balance control. It took several weeks of therapy before I could walk with only a cane. Speech therapy helped me learn to pronounce words again. Slowly, the ability to swallow recovered enough for me to eat normally again.
During this whole time, my lovely wife stayed by my side and helped keep me alive. Without her tenacity I'm convinced I would not be here today. After about 5 weeks in a hospital bed I was well enough to walk with a cane and go home. At home I did my best to resume my life as a husband, father and provider. For several more months I worked at refining my ability to speak, and walk. My wife, my family and many good friends helped me, helped us, in every way they could.
Several months into the my recovery, my wife started to have some health problems. Her eyes bothered her and she felt as if she had a sinus infection. Not long thereafter, her friends noticed that she was walking with a limp. She was a talented artist and began to lose dexterity in her hands. We made an appointment with the primary care doctor who we had both seen for years. He ordered an MRI and the symptoms my wife had presenting with were revealed. She had a massive 6 centimeter brain tumor. We were both shocked. Our friends and family were beside themselves. How could this happen twice in one family? From that point, Barbara's health started to fail very quickly. She was rushed to emergency surgery where a tumor the size of an apple was resected from her brain. The same doctor who operated on me, operated on her. We even had some of the same nurses. Soon thereafter, Barbara underwent chemo and radiation for what we eventually learned was a glioblastoma multiforme.
These events were life changing for me, my wife and our children. People told me I should write a book about it. After years of recovery, both physical and emotional, I finally did. My book is called: If You Love me, Take Me Now.
I am hoping that this story of my pain and loss can somehow bring some good to the world. Proceeds from the book will be donated to the pursuit of a cure for brain cancer.