fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

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fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

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BRCA1

“Am I going to die?”
Little sister, in recovery, hair splayed behind her like wings,
eyes round.
“No,” I say, “they’ll fix it.”
Twelve years ago.
She was 47, then.

In the Nineties, before the
gene test,
our mother had breast, then
two years later, ovarian.
Ileostomy,
the indignity of the bag.
Still, the proliferation of cells,
like a dusting,
they said,
like powdered sugar,
everywhere in the abdomen.
At 65, our mother still resplendent,
smooth skin,
red toenail polish,
tanned legs.
Sucking on ice chips.
Each day, “descending one level
into Dante’s Inferno,”
she’d said.
An English major to the end.

“Where do you want your ashes spread, Mom?”
“Somewhere beautiful.”
Thrown from a balcony over Central Park.
Sprinkled in the Canal outside her home in Venice, California.
Strewn in the Long Island Sound, in the town
where she raised my sister and me, alone.
And yes,
some ashes are still in my closet, more than
twenty years later.
I like having her there.

Twelve years ago,
an elective hysterectomy.
Her surgeon,
in the hallway,
“Your sister’s got ovarian cancer.”
I hate him so much for telling me
in the hallway,
not looking at me.

I didn’t lie to her.
She didn’t die, not right away.
Debulked, the ugliest word in medicine.
Nuked–okay, chemotherapy.
Lost her glorious, dark hair,
The only thing she truly loved about herself.
Radiation.
Immunotherapy.
Kidneys, cruel on creatinine.
Lungs rebelled.
Eyes dried from Sjögren’s syndrome
and no matter how desperate,
no tears would come.

Twelve years stage IV recurrent ovarian cancer.
Then it spread,
red putrid blisters doubling daily on the host
of her skin,
covering one breast, her chest and arm.
Even the undertaker said
he’d never seen cancer like that.

She waited for me to die.
Jerky movements, wild eyes, terrified, gurgling.
I could not calm her.
Not a nurse, nor a doctor,
I’d given her what they gave us:
morphine,
dilaudid,
atropine.
Still the struggle,
I’m not going: a kid having a tantrum because
she didn’t want to go to school.
Then, with a thrust like a flying steel girder,
she kicked me, hard, in the stomach.

I remembered the lorazepam drops
and with it came the realization:
I could protect her no longer.

Just a few days before,
she had patted the bed next to her
for me to lie beside her,
as I had with our mother.
A love only three women could understand:
Female; unbreakable; undying–or so they’d said.
The three of us occupying our own sphere.

Now my sister’s ashes are in my closet
with our mother’s.
The two with the BRCA gene mutation.
I tested negative.
I am a lone planet,
spinning pointlessly in a galaxy
without them.

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Julie List, a psychiatric social worker, is on the faculty at the Albert Einstein College of Medicine in the fields of family and social medicine and psychiatry and behavioral sciences. She runs a caregiver support center for families and staff and has published a memoir, The Day the Loving Stopped: A Daughter’s View of her Parents’ Divorce.

About the Poem

“In retrospect, this poem does not seem to mirror the intensity of the losses it describes. In fact, the coolness portrays the distance required to face the devastating feelings generated by the demise of these two essential people in my life. It aims to describe the unmooring that occurs when a gene mutation kills two beloved women long before their time, leaving me behind to go on without them.”

Comments

17 thoughts on “BRCA1”

  1. Actually, I think it does “mirror the intensity”. Fifty three years later, my dad’s death from pancreatic cancer left us floating…only my sister and I held on to one another, and still do, throughout.

  2. As a poet with incurable ovarian cancer, this really, really moved me, and hit the nail on the head. Thank you.

  3. Really enjoyed the poem Julie. A poem with so much love, so much loss and suffering revealing a deep understanding of life. Thanks,

  4. A brilliant poem.
    It deserves to be published widely–not only
    as a testament to what Cancer patients suffer
    but just as a poem.

    To me, it also suggests that cancer patients should
    have a choice as to how long they live and suffer.
    Some would want assisted suicide.
    Others would not.

    But it should be the Patient’s Choice,
    not a decision made by the government, a hospital,
    a doctor or even the patient’s family.

      1. So sorry for what you and your family have experienced. As a former oncology chaplain and retired oncology physician assistant, your experiences with family cancer was also your cancer journey as a caregiver. Can only imagine the powerful gift you must be to your clients, patients and families especially if working with those in their own cancer journey. Your reflection is powerful. Blessings on your work.

  5. Amelia Wood Silver

    Heart wrenching poetry Julie. Heart rending loss and life. No way past or over or under these losses. But love to you from one of your found sisters.

  6. Your last paragraph still has me breathless. It encompasses what it means to be a brca1 family. I have brca1 and I am floating with you, even if that does nothing to replace the women you love and can never lose.

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