In his own words: living with a brain tumor


Tom, 51, learned that he had a benign brain tumor 9 years ago, but he and his family continue to live a rich life as they weather the effects of his condition. He is presently on leave from his job as a chemistry lab director for a large pharmaceutical company, but he is still able to drive and maintain an active lifestyle. Here's his story.

What was your first sign that something was wrong? What symptoms did you experience?

Out of the blue, I had a 36-hour period during which I had repeated seizures-the doctors called them "absence" seizures–I just wouldn't quite be there for a few minutes. Then I thought I heard a mouse in the dining room, though there was nothing there, and while I was down on the floor by the wall looking for it, I became aware that my wife was talking to me, but I was unable to answer her.

What was the diagnosis experience like?

We saw the doctor the following day, and I had an MRI a week later. By the time we got home from the MRI, the doctor had already called to tell us to make an appointment to see him immediately, and he had a neurologist waiting when I got there. They'd found a slow-growing tumor that they wanted to try to remove surgically. Although they emphasized that this was very serious, they didn't think it needed emergency treatment. They were very responsive, though, to my request that they operate as soon as possible. I had my first surgery within two weeks of the diagnosis.

What was your initial and then longer-term reaction to the diagnosis?

Initially it was like, "You're kidding me!" but that very first phone message drove home how serious this was. My wife and I just wanted to do whatever we could to take care of it as quickly as possible. That was 9 years ago, and I've had time to really process it, but it's still as scary today as it was on that first day.

How is your brain tumor treated?

I've had surgery twice-in 1993 and again in 2000. In the initial surgery they weren't able to remove much of the tumor. They likened it to trying to scoop up cottage cheese; the tumor didn't have clear boundaries and had penetrated deeply into my brain. In 2000, I had more of the tumor removed during a new procedure they were using in Boston, in which they use the MRI during surgery to guide them as they proceed. I also had a course of radiation treatments afterwards to address the residual tumor, and I've been on anti-seizure medications since the first surgery-first Tegretol and now Dilantin.

Did you have to make any lifestyle or dietary changes in response to your brain tumor?

Fatigue, alcohol, and stress all have the potential to precipitate seizures, so I can't have even a glass of wine. Also, I try to reduce stress in my job; at the moment I'm on leave from work.

Did you seek any type of emotional support?

My family has been fabulous. My wife, a cardiac nurse, helps me to research my treatment options and look for second and third opinions. We have a very supportive network at our church and in our neighborhood, and my brothers and sisters have been there for us every minute.

Does your brain tumor have any impact on your family?

My son was 5 when I was diagnosed and my daughter was 9. This was particularly tough on them, especially on my daughter, who was old enough to begin to grasp how serious this could be. And of course my wife has had to be like a single parent at times. Now that I'm on leave, I'm Mr. Mom at home, and I deal with the house, but she manages the finances at present-one of the symptoms that led up to the second surgery is that I'd begun to make errors in the checkbook.

What advice would you give to anyone living with a brain tumor?

Find a supportive network of friends and family. Keep talking to the doctors; be persistent in asking about treatment options and new developments. If you're uncomfortable negotiating the medical maze, find a liaison who can translate things into layman's terms. And learn to relax and nap during MRIs!

Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.

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