by Debbie
All I knew about brain tumors before I was diagnosed with one was how romantic they seemed in movies. But when I got the news 21 years ago that I had an anaplastic astrocytoma, I remember thinking “there’s absolutely nothing good or romantic about this. This is a death threat.” My husband and I were told I had six months to live.
When you find out that your life is threatened, it’s like being accosted on a sidewalk late at night. It’s life or death. I think we reacted in a ferocious way. After the initial operation to remove the tumor, which was done within a week, we looked into every single avenue of further treatment. We decided early on that I had to have hope, and I could only have people on my team who had hope for me as well. We fired a few doctors who either had no hope or who were not totally honest with me.
Ultimately we chose to go to the University of California, San Francisco. Our UCSF neurosurgeon, Dr. Gutin, was very honest and well trained, and from the beginning we were able to put all our faith in him. At our first meeting I told him, “You know these people who are only lasting six months? Don’t give me what they’re getting. I want something experimental.” He came up with a protocol that included radiation and chemotherapy, both of which were easier than I’d expected. After that protocol was completed, I asked for a second one. I was a willing partner — we didn’t care what they did as long as we still had some hope.
We even agreed to undergo an interstitial implant, which was only being used then for cervical cancer. The surgeons placed radioactive seeds into my brain, which they left in place for a week. During that time I wore a World War II lead-lined helmet to protect everyone around me from the radiation. They took out the stitches and removed the seeds at the end of the week, and we all hoped they’d done damage of exactly the right kind.
Six months later, scarring and swelling in my brain required another operation. Because I knew that every time my surgeon operated it was another chance to save my life, I told him to be aggressive. I woke up after the surgery to find out I, an avid, life-long reader, could no longer read a page of text. I was furious. I stormed up and down the hospital hallway and wept. I was told that the damage to my brain was “complete,” meaning it would neither worsen nor improve.
The good news was that tumor seemed to be completely excised, and I realized that I needed to make another mental shift. I did not want to be a patient for the rest of my life: it was time to move on to getting well again. Damage to my optic nerve meant that I had significant gaps in my vision. I had to develop new techniques so I could once again read well. I’ve walked into trees more than once because they were on my blind side, and it’s still awkward when people extend their hand to shake mine and I don’t notice. Perhaps worst of all, I’ve lost the part of my brain that allows me to recognize people, and I still have to rely on visual cues to recognize even my wonderful husband and daughters.
I’ve adapted, though. It’s been 21 years, and I live a life most women would envy. I’m healthy, I’m loved, I have wonderful children and five grandsons. My job now is to stay healthy and happy and enjoy my family. I’m very lucky that we were able to stay together through all this, even through the times when my treatment changed my behavior and personality.
Part of the grieving process with something like this is that you bargain—probably everyone of us with cancer has bargained in some way. I remember bargaining very specifically that I wanted to see my daughters graduate from high school. And I kept bargaining for more things. And when each of those things happened, when I was there even for my daughters’ weddings, then I really wept. It would hit me so hard, this gift I’d been given. It’s something that most people take for granted, and I would have too if this had never happened to me. I think this experience makes a person wiser and more compassionate. The tough times have made me a better, more spiritual person. Our family is stronger and wiser, and our daughters reflect this.
If you have a brain tumor, you can’t get where you need to be without hope. It’s so easy to lose hope. That’s why I visit new brain tumor patients—it gives them hope just to see me, because I’ve survived so long. They always tell me, “thank you. I just wanted to see you.” And I know just what they mean.
