By Susan Spector (Cornville, AZ)
You. Have. A. Brain. Tumor.
Five words and everything changed. I became a patient on a Watch and Wait protocol I now call WaWa.
And that’s what I’m doing today. I stalk the online portal, waiting for my test results. The radiology report shows up just before bedtime.
I skim over my three favorite words: the first one is “stable.” The second and third words go together: “grossly unremarkable.” Kinahora. That’s what my Yiddish-speaking Jewish grandmother would say, invoking the evil eye, not wanting to jinx the good news.
I search out the fear, sensing I’ll find it, but not in a mindful, meditative or particularly grateful way. That gratitude I once believed would last forever, where did it go?
“FLAIR hyper intensities in cerebral white matter and white matter lesions.” And there it is. Something new. Something to be afraid of.
I chug my water, determined to flush away the gad, short for gadolinium, the intravenous contrast used earlier in the day. I want the heavy metal poison out of my body. Gad is an injected light source used to illuminate what’s lodged deep inside my brain. Its atomic symbol is Gd, an acronym my tradition uses as a placeholder for the sacred nature of God’s ineffable and unpronounceable name. I contemplate a quote from the Holy Rascal teacher, Rabbi Rami Shapiro, “God is real and everything we say about God is made up.” It’s a mystery how the gad knows just where to go in my body.
Ironically, I met the light of the Infinite Mystery, what the mystics call the Ein Sof, through the rogue cells deep inside my brain.
When I broke out in a sweat on one of my bi-annual retreats inside the big magnet machine, I listened closely and heard a small voice, over and above the noise of the beast. I lay still. Inhale, Sh’ma, pause. Exhale Yisrael, pause. Breathe in Adonai, pause. Exhale Eloheinu, pause. Breathe in Adonai, pause. Return the breath to the Source. Exhale, Echad. A six-word Jewish prayer mysteriously appeared. Despite the thrumming, drumming and clanking noise inside the machine, I connected. Partnered with divine energy, everything changed.
I head for an emergency visit to Dr. Google, worried I’m moving toward a life inside an assisted living facility. In the morning, I wake up early with no more clarity than the night before. I grab my coffee, sit down at the table, pull up an empty chair for my partner and anxiously fire up the laptop. I like to be early for the Zoom Room. It dials down the anxiety of meeting with the expert meditation guides. The neurodocs.
In the beginning, they gave me the mantra for finding my sense of calm and quiet within. They gave me the practice. The WaWa. Now they keep me on track and pull me out of the rabbit holes I can’t seem to avoid.
The lead meditation Teacher/Neuro-oncologist shows up, wearing a crisp white lab coat and looking radiant on the screen. She gets right down to business, with her unusual combination of strength, clarity and comforting softness.
“Your MRI looks beautiful. All stable.”
“Yeah, but what are those new white matter lesions?”
She points to highlighted areas of the brain image on her screen share.
“This big white lesion is scar tissue. See how it follows the surgery path where Dr. Yirah did his magic to “let flow occur?” And these other white dots, well, you could call them “blessings of maturity.”
She’s a poet. She skillfully moves the conversation and the meeting forward.
“Were you comfortable with the nine-month scan interval or do you want to try and push it out to one year?”
“I don’t know, what do you recommend?”
“I would be comfortable either way.”
I turn to my partner, now sitting beside me at the table.
“What do you think?”
“I’d rather see sooner than later if something’s going to change” he says without
hesitation.
The neurodoc/poet moves the conversation along, directing the question back to me.
“So, you’re the only one we haven’t heard from, what do you want?”
“Part of me wants to graduate to the annual milestone, but I’m more comfortable with 9 months also.”
Everyone smiles at each other from their Zoom squares and I finally exhale.
The apprentice meditation teacher enters the Zoom room. He is a resident intern with a clipped data-only voice.
“White matter lesions, clinically insignificant, 30% of MRI’s, higher in older people.”
The master meditation teacher enters the Zoom room. The neurosurgeon.
I tell him I spent time last night with Dr. Google, chatting about white matter lesions.
“It’s Watch and Wait, not watch and worry. At least you weren’t consulting with
ChatGPT!”
The mindfulness. The challenge. Return to the WaWa.
Return to the breath.
Susan Spector is a brain tumor survivor who focuses on writing as a path to healing She is a retired educator. Her true education began with her diagnosis at age 62. She is currently at work on a series of essays under the pen name Shoshanah bat Malka, with the working title Reporting Live from the Frontal Lobe.