I am excited to share a guest post for National Hereditary Breast and Ovarian Cancer (HBOC) Week from my friend and fellow advocate, Amy Byer Shainman. Some of you are familiar with Amy’s tremendous advocacy work and some of you are just learning about it today. Today is National Previvor Day, so it the perfect time to share an excerpt from a chapter from Amy’s upcoming memoir, Resurrection Lily. In her guest post, Amy shares about her sister’s (Jan’s) ovarian cancer diagnosis in 2008. Thank you, Amy, for giving us a glimpse into your amazing story. Can’t wait to read your memoir!
In honor of 2016 National Hereditary Breast & Ovarian Cancer Week and National Previvor Day, I am thrilled to give Nancy’s Point the very first sneak peek of my BRCA/Hereditary Cancer memoir which will be available next year. Amy Byer Shainman
(an excerpt from the upcoming memoir, Resurrection Lily)
by Amy Byer Shainman
“They found a mass.” SISTA said. “It could or could not be cancer.”
Frog in my throat, I could not speak.
She continued, “My CA-125 was 200.”
CA-125? I thought to myself, what the heck is that?
“What is that?” I asked.
Little did I know at that point that CA-125 would soon become an all too familiar unfortunate new term in my vocabulary.
“The CA-125 is inconclusive. It’s a blood marker. It could be Meigs disease-a benign condition usually affecting the right ovary,” SISTA said very matter-of-factly.
Over the next few weeks my 48-year-old SISTA became increasingly bloated and distended. Even with a hospital “connection” it can still take time for surgery to be scheduled.
So, I flew out to California and stayed with her at her place while we waited.
SISTA’s pain gradually got worse and worse. The fluid (ascites) kept building up in her belly so we had to go to the hospital two times to get several liters drained out of her, but through it all SISTA and I still managed to keep a sense of humor.
We went for her fluid removal, called a “paracentesis” and then we would walk to Perry’s after to get a bite to eat. Goofily, arm in arm, we would stroll, skip, and giggle, “We’re going from ‘Pary’s to ‘Perry’s’,” finally both of us succumbing to a complete outburst of hysterical laughter.
Unfortunately, our laughter didn’t last very long. SISTA was having a very bad day; she was in excruciating, debilitating pain on the ground, unable to move.
There is nothing like having to watch someone you love in intolerable, insufferable pain. I call it DEATH PAIN.
I yelled loudly inside my head, MAKE IT STOP PLEASE!
SISTA’S complete physical agony became the most intense emotional agony that I had ever felt in my life.
“This pain. Please make her pain stop. PLEASE MAKE IT STOP!!!!!!!”
I ferociously drove to the hospital to get her more Percocet, all the while thinking about that scene from Terms of Endearment where Shirley MacLaine runs up to the nurse’s desk and screams, “GIVE MY DAUGHTER HER MEDICINE!!!!”
I got the Percocet for SISTA, drove like a crazy mad woman back to her house. She took the Percocet.
It did NOTHING.
Frantically, I called up SISTA’s doctor’s office and demanded they admit her to the hospital early. Her pain was not being managed.
“HER PAIN IS NOT BEING MANAGED!”
Yes, I was emotional but also firm.
“I AM BRINGING HER IN!”
I was having my Shirley MacLaine moment.
SISTA was admitted to the hospital and stayed there until her surgery. Mom, Dad, my two brothers and I were all there that day in the waiting room.
SISTA’S surgeon, a gynecological oncologist, came out after four hours and delicately talked to us, or rather, this very lost herd of deer in headlights.
We all scanned the surgeon’s face to see what the road ahead would look like for all of us.
“It is cancer,” he said. “A mass on her ovary the size of a grapefruit. We did a complete hysterectomy, plus took part of her omentum.”
BA BA BOOM! A big rig hits on the dark road. One doe and one buck DOWN! There go my parents.
NEXT TRUCK IS A COMIN’…
“Here is the picture of her insides,” her surgeon calmly points. “See the grapefruit?”
SWERVE, SMASH!!! Two more ROADKILL as my two brother bucks are now left laying there in lifeless shells.
SISTA’S surgeon tried to revive all of us all with some positive news, “The cancer looked to be contained and lower staging but we will have to wait for final pathology.”
I’m waiting for an overdrive to hit this last remaining Bambi: me.
I’m waiting…TRUCK, CAR, ANYTHING?
Anything on the road ahead to knock me down?
Xanax and coffee were keeping my hind legs afloat. My last sip of coffee was cold but I gulped it down anyway; completely unfazed by the nasty chalky hospital creamer that had accumulated on the bottom of the styrofoam cup.
As I sat in my caffeinated numbness, all I could think about was Gilda Radner. Gilda also had a tumor the size of a grapefruit. I knew there were “ breast cancer survivors,” but I never heard of “an ovarian cancer survivor.”
Amy Byer Shainman, a.k.a. @BRCAresponder, underwent prophylactic surgeries in 2010 to drastically reduce her cancer risk; a nipple sparing, skin sparing mastectomy with reconstruction plus an oophorectomy and hysterectomy.
As a BRCA 1 positive previvor and BRCA/Hereditary Cancer Advocate, Amy passionately “responds” to others via many social media platforms and national media placements; sharing her story, offering support, and emphasizing how crucial genetic counseling is in the genetic testing equation.
Executive Producer, Pink & Blue: Colors of Hereditary Cancer
Creator of Hereditary Cancer News storify.com/GenCSM Co-creator of #GenCSM (Genetic Cancer Social Media)
Co-Administrator BRCA Sisterhood on Facebook
Are you a previvor or do you know someone who is?
Has your family been impacted by hereditary cancer (not necessarily brca related)?
Have you seen Terms of Endearment and if so, have you ever had one of those Shirley Maclaine moments?