It was a year ago yesterday, July 4th, 2022, when we found out Glen had a tumor the size of a golf ball, in his brain. On the left side, sorta right in the middle there, where speech is formed. A part of the brain they call “the eloquent brain” because….? I don’t know, they just call it that.
On July 6th, 2022, Glen had emergency brain surgery to remove the tumor. When the post-surgery pathology report came to Glen’s email, we opened it, sat next to each other, and looked at what it said. The only word I saw on that report was GLIOBLASTOMA.
I said nothing.
Glen couldn’t read, so he looked at the report, then me, the report, me: “What? What does it say? What kind of tumor is it? Am I okay?”
“I don’t know,” I lied. “It’s hard to read. Let’s wait until we hear from the doctor.”
“That sounds good. Let’s not worry. It’s probably fine.”
Then we did what we do, and what I’ve written about, so many times, in this newsletter to you:
We snuggled in and watched out favorite tv show. We held hands and I hid the first signs of the quaking inside me that would root itself in my body, for months. It was days before we officially found out what was going on, and during those days I didn’t say a word to Glen, or anyone, because I wanted to not know, for as long as I could. I wanted to believe that the word “glioblastoma” was on the report because Glen didn’t have that kind of tumor.
I waited patiently for our doctor, our surgeon, anyone who knew anything to call, while also hoping they never would. Finally, three or four days after reading the report, I broke down and called. I tried neurosurgery first. The woman who answered was rude and I was shaky, so I hung up. I tried the pharmacy next (why the pharmacy, I have no idea). At that point, I was pretty much hyperventilating and couldn’t get a single word out, so I hung up again. Next I tried our primary care doctor, and the woman who answered was kind. I choked out the words, “Please. Please tell me what is going on with Glen.” She said, “Ok hon. Let me put you on hold for a sec while I look at his chart.”
Wait wait wait.
Haven’t slept in days.
Wait wait wait.
Way past my emotional threshold.
Wait wait wait.
That hold music!
She finally came back on:
“Looks like he has an appointment scheduled to get his prostate checked next month. You’re all set.” I completely lost my mind. “His prostate? His prostate? I’m not calling about his prostate! I’m calling because HE HAS A GLIOBLASTOMA AND NO ONE HAS CALLED TO TALK TO US ABOUT WHAT THAT MEANS. HE DOESN’T EVEN KNOW HE HAS A GLIOBLASTOMA, ONLY I KNOW! WHY DO I KNOW, AND YOU DON’T KNOW? WHY WHY WHY?”
She was, whoever she was, exceptional in that moment. She stayed calm, though I did hear her suck in her breath when I said glioblastoma. She did not take my anger and rage personally. When I finished, she said, “You’re right, I don’t know. Let me see what I can find out. Don’t hang up. I’m coming right back, I promise.”
And she did. She came right back, and got me transferred to Glen’s surgeon, who was also exceptional.
He explained to me what was happening, why no one had called us, or knew about Glen’s diagnosis until right then, when I had called and told them. It had to do with a law requiring pathology reports be sent to the patient first, before the doctor. There was a glitch in our case, and the time between us getting the report, and the doctors getting the report was longer than it should have been, so no one had seen the report yet, except for me and Glen. I had to read the report to the surgeon over the phone. That is how he found out for certain that what he had removed from Glen’s elegant brain was a glioblastoma.
When Glen forgets, I remind him. When he slumps in fatigue, I put my arm beneath his, and together we straighten. When his face scrunches up, I ask if he’s taken his medicine, for the headaches. When he rages in frustration at not being able to do what he used to be able to do, I sit next to him and wait. Notice my breath, my hands, my feet. When he turns to me in tears, I touch my forehead to his forehead, put my hand on his cheeks. Together we cry.
I keep watch on my Glen now, in a way I never have, as he struggles to say the words he wants to say. I search his body for clues. I keep vigil on his face and his eyes, so when the words won’t come, I can still hear him.