Spot

"Brain tumor" are just about two of the scariest words you could ever hear. In September 2005, that was my diagnosis.

In June of that year I began to have seizures. Because I also have epilepsy, my neurologist's opinion was that it was merely a recurrence. But I hadn't had seizures in over a decade and, although I couldn't explain it, these seizures were different. For one, they were more frequent, coming at a rate of once per month. And all of a sudden I was having auras - the warning signs that precede a seizure.

After 5 months of being misdiagnosed, I demanded an MRI which revealed a meningioma in one of the frontal lobes - probably the best possible place to have a brain tumor. Apparently the frontal lobe doesn't do much. Since meningiomas are almost always benign, this was also the best possible type of brain tumor to have. If "best" is really the right word to describe such a situation.

But even so, I can't really begin to describe the terror that I felt. There were a few days before I knew the tumor was benign and all I could think about was that my son was two and a half years old. The prospect of leaving my husband a widower with a toddler frightened me more than I could say. I clammed up. I was in such shock I didn't tell anyone what I knew for two entire days. Fortunately, as it turned out, my brain tumor was not a death sentence.

My life changed dramatically overnight. I stopped driving a car - and didn't get behind the wheel for almost a year. I couldn't pick up my son from preschool. I couldn't do the grocery shopping. Just about everything about my life got rearranged. Several very good friends pitched in to help me pick up my son from preschool. God bless Marion, Kathleen, Elaine and the other women who pitched in to help.

My husband Duane kept me in good spirits. He suggested I name the tumor. I looked at him like he was insane and said, "What am I going to call it? Out, Out Damn Spot?" He looked at me and said "Spot!" and we both started laughing. And that was how my brain tumor came to be named.

For many months, I was bored silly and stuck at home. Thankfully, my mother, who is on the board of the To Celebrate Life Breast Cancer Foundation, told me that the organization was looking for a new webmaster on an emergency basis. (More on this great organization in a later post.) This gave me something to do to occupy my time. I was able to take a Dreamweaver class at the local community college, and Outreach, our local paratransit, provided the means to get there. The project kept me focused on what I could do, rather than what I could not. It took my mind off, well.... my mind.

Ultimately, with a new neurologist and neurosurgeon, surgery was scheduled for December 5, 2005. But first, there would be a preliminary procedure in which a vascular surgeon would cut off the two arteries supplying blood to the tumor. This would cause less blood loss during surgery, and involved snaking a tube into my femoral artery, up through my aorta, through my carotid and into the arteries of the brain. Microsponges were then shot into the tumor arteries with a whoosh, thereby closing them off. What was weird about that is that I could hear the whoosh and feel a little bit of pressure, although it wasn't painful.

One week later, with a dying tumor in my head, I went in for the resection. The five and a half hours of surgery was successful, during which I lost only two ounces of blood. The really big decision in all of this was whether to shave half of my head or all of it. Now that may sound like a really small thing, and it is, but it was nevertheless the most difficult of all of the decisions I had to make. O Vanity of Vanities, all is vanity! I hemmed and I hawed and finally, right before they wheeled me in I thought, "What am I going to do with half a head of hair? Wash half my head?" That sounded like a lot more work than I needed with a big scar on my head. So I told the surgeons to just shave it all off. For what it's worth, I do not resemble Persis Khambatta, Natalie Portman or Sigourney Weaver. I do not look good bald.

The recovery time was unbelievably short. After three and a half days I was released from the hospital. I had staples in my head, but other than that I felt pretty good. Although I tried to keep my son from seeing them, because it really did look pretty scarey, he walked in on me one day when my hat was off, took one look at me and walked away. Without missing a beat I got him to come back and told him that I had Thomas the Tank train tracks on my head! He thought that was really cool.

The worst part of having a brain tumor were the medications I had to take, some to keep me from having seizures and some to prevent brain swelling after the surgery. The side effects of these medications were to increase my appetite and to make me sleepy. I gained nearly 30 pounds in one year. This is all that remains and it's time for the added weight to go too.

It's been about three years now. I have an MRI every year and I am still free of recurrence. I was blessed with great doctors and an amazing family and friends through it all. I am walking in honor of my two neurosurgeons, Dr. Mitchel Berger and Dr. Michael McDermott, without whose pursuit of excellence in both their education and in their practice, I might not be here. God bless them both for saving so many lives. I am also walking in honor of Dr. Bruce O. Berg, my pediatric neurologist and my "white knight in shining armor," who helped me and my family through so many difficulties as a child growing up with epilepsy, and who helped me to find a good neurologist when the brain tumor was finally discovered.

For all of those who are dealing with cancer, including those with blood cancers, this walk's for you too!