The cell phone call, nearly ten years ago. I had just gotten to my car after a round of golf late one afternoon. I texted my wife Leslie to say I was on my way home. And she called back immediately, which I thought was odd. But she could barely talk - one or two words, then nothing. She was obviously frightened. I said, “Is the same thing happening?” She said yes - fully understanding what I meant by the question.
Two weeks earlier, while we were out for a hike, she got a call from our adult son, but she had a hard time talking with him. She turned to me and said, “I can’t say anything. I’ve lost my words.” It was odd. But that momentary blocking of her language lasted only fifteen minutes or so - she felt fine, no other effects, and after drinking some water and eating somethng, she was fine. I watched her carefully over the next couple of weeks, but there was no sign that anything was wrong.
But this was much more severe. She could understand me, and could answer my questions … sort of. She had been out with her friends that day, so I asked, “Where are you?”
“Here.”
“Where?” I asked.
Nothing.
“Are you at home?” I asked.
“Yes.”
I knew from that call that this was serious, and our lives had just changed forever.
I got home as quickly as I could, called her doctor’s office and was told to take her directly to the ER. But her language had not recovered as it had two weeks earlier, she showed a lot of confusion, was having difficulty following simple directions, and was clearly frightened.
The MRI made it clear - there was a golf-ball sized aggressively malignant brain tumor (a glioblastoma multiforme) growing in her left temporal lobe - the language center of the brain. She had had no other symptoms - not even a headache - except for those two language blocking episodes. Here is an image from that first MRI:
That is how our twenty-month journey began - including two major brain surgeries, radiotherapy, and three clinical trials of chemotherapy. She did surprisingly well during that time - tolerated the treatments, was very active and engaged in life for much of that time. She never lost her spirit or her sense of humor. But the tumor took its toll eight years ago this New Year’s Eve.
She was treated through the UCSF Brain Tumor Center - and they gave her an extra year and a half of active life. I am still involved with that program and their Neuro-Oncology Caregiver Program to support the caregivers of current brain tumor patients. If something good can come from our experience, I’m happy to try to help.
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