Don's Story

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January 29, 2013

I am doing all that I can to raise Meningioma Awareness by telling my story to anyone who will listen. I'm on "watch and wait," but in the mean time, I want to do all that I can.

I've battled with a meningioma brain tumor most of my life. At 9 years old, I was diagnosed with petite mal epilepsy. At 15 years old, my family got the worst news of their lives- I had a brain tumor! The size of a tangerine! It had invaded my sinuses.

My parents went through a divorce while I was in the hospital for my first surgery- I was 15 years old. The surgery lasted 12 hours and I was in the hospital for 2 months. After that, the tumors reoccurred almost yearly. During my second surgery, the doctors left part of my skull out to ease any swelling that might occur. Imagine my joy when I found that out! Then, I had surgery for a third tumor and when it was removed, it was the size of a walnut! When the fourth tumor grew back, the doctor said “no more surgery, let it take its course.” I'm sure glad my parents didn't listen to the doctor’s advice. When I was 17 years old, I had radiation treatments for six weeks before my fourth surgery. I have remained tumor free for almost 30 years.

Between those 30 years, I've been married for almost 25 years. I have three kids and a wonderful life! I have two kids in college and will soon be a grandpa for the first time!

Recently, my tumors have returned. The first two tumors are located in the same place as the ones I had removed as a teen. The other tumors are located in the right and left frontal lobe.  I’ve been on “Watch and Wait” for 2 years now. The tumors aren't growing fast enough to need to be removed yet. This may seem odd, but I feel like I’m here for a reason. Destiny, karma, God’s will? I hope in some way I can make a difference. I’m passionate about helping in some way; I’m not clear on what that is yet.

Maybe just that I’ve lived most of my life with a brain tumor and at fifty years old, I am a survivor! I can’t sit around and do nothing; I’ve dealt with this all of my life. Talking and writing has helped me a lot. Support groups with people who know what you’re going through is keeping me sane.

I stole a saying from a 12 step program, “This too shall pass.” I believe that you have to see the other side of an adverse thing to see the rainbow on the other end. Silly as it was, I was focused on getting my driver’s license. I had a goal I wanted to achieve; I never lost sight of it!