Thoughts about Relapse of Multiple Myeloma

During last week's multiple myeloma writing circle, our group leader shared an excerpt from Amanda Gorman's poem as our reflection prompt for the day.

"Anxiety is a living body,

Poised beside us like a shadow.

It is the last creature standing,

The only beast who loves us

Enough to stay."

My first reaction when reading this poem sends me straight back to that iconic scene in the movie “Alien” — Sigourney Weaver's sweat-slicked face illuminated by emergency lights, her breath coming in gasps as she creeps down the spaceship’s corridors, motion tracker beeping in her trembling hands. You never know where the creature lurks — behind which wall, within which shadow — just as anxiety hides in the dark corners of your mind, ready to burst forth when least expected.

I agree with Gorman capturing this uneasy feeling perfectly: anxiety is not just an emotion but a presence with its own heartbeat, its own spirit, waiting in ambush for moments of vulnerability, ready to burst forth when we least expect it.

At night, a muscle cramp seizes my toes — has the creature found me? I fumble for a glass of water to wash down Valtrex (valacyclovir), my twice-daily shield against shingles. Sinking back against the pillow, I stare upward, conscious of how my body settles into the mattress, how my fractured bones seek their resting places. My chart lab reports become treasure hunts through my bone marrow — eyes scanning for "abnormal" flags beside immunoglobulins and M-spikes.

Some mornings I wake pain-free; others, I can't tell if it's lingering shingles or just my bones protesting from yesterday’s travel through the subways and snow drifts after my Darzelex (daratumumab) treatment at Mount Sinai or carrying my laptop, books and my lunch up the two flights of stairs to my Blue Zone healing space.

David called yesterday. I could hear it in his voice before he even mentioned his latest blood results — that slight tremor, the careful way he cleared his throat before saying the numbers aloud. "Two percent increase in those malignant cells." Just two tiny percentage points that might mean nothing to a stranger reading his chart, but we both fell silent, knowing what shadows those numbers cast. He's been on Pomalyst (pomalidomide) and Darzelex for what, three years now? Four? The question hung between us: stick with the devil you know, or roll the dice on something new?

I want to believe my mind is a fortress, but each time I hear about a relapse, I feel the walls crumble. These stories plant themselves in my thoughts, growing overnight into vines I cannot seem to uproot.

Being a part of multiple myeloma support groups keeps me accountable, yet sometimes I leave those monthly Zoom meetings haunted by Stan’s experience as he described the lung cancer that forced him to abandon his multiple myeloma treatment. I can't shake the sound of Marianne's trembling voice while detailing her fears about the upcoming stem cell transplant. I sit in my quiet living room afterward feeling shamefully grateful that I am not in their situation.

Some days I think about leaving the multiple myeloma forums. I scroll through my past comments, wondering if my detailed accounts of MRD-negative remission — two years, three months and counting — offer genuine hope or just set unrealistic expectations for the newly diagnosed members whose messages overflow with questions I once asked.

So, what do you think about Gorman’s poem? Does it resonate with you? I’m curious about which lines caught your attention, which phrases made you pause and consider their meaning beneath the surface.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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