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darcipicoult

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Virginia Woolf advocated women writers to have a room of one’s own. A space where one could slip away from the demands and distractions of everyday life in order to create life on the page. In today’s world, that means turning off your phone and unplugging from emails. Though I have been known to read my words out loud—startling my daughter, who asks, “Mom are you talking to someone?”—or type to the beat of Ella or Chopin, writing is essentially a solitary adventure wherein I stumble, explore, and sometimes find the perfect word.

So when my writing goes public, it is with great anticipation—particularly when I exposed myself and body to almost 9 million REDBOOK readers (who have never met me or my body). Will anyone connect to this story? Will it make readers run, or will they want to know more? Yikes, given everything I’ve exposed, how much more? I braced myself for whatever responses came in.

When the first email appeared, I read words which echoed my own experience. My heart relaxed with the connection, and I opened another; a woman who struggled with loss of sensation because of a spinal hematoma. A doctor wrote of her appreciation for clarifying what and where a vulva is. A woman who had a vulvectomy at 18 and was on bed rest, pregnant with twins, spoke of her isolation. A man who had testicular cancer spoke of his survival. Facebook messages appeared daily: Women and men wrote about their sisters, friends, partners, and selves with a depth and honesty that inspired my own. Just a sampling:

“I just read the article, and it was like all the same feelings I had when I found out that I had vulvar cancer. How in the world do I explain that to people? Most people don’t even know what a vulva is.”

“Although I have never had cancer, I’ve dealt with early menopause (at age 34), IVF, miscarriage, etc. It all makes you feel the antithesis of attractive and feminine.”

“I was moved to tears because these are the same questions I had, but I had no pamphlet to guide me in dealing with this. There are no books written about this.”

“The coexistence of illness and sexuality is so rarely written about. I think that experience often happens for women—perhaps in lesser degrees and more psychologically based—with childbirth, menopause, and other difficult periods in their life. And often women just retreat and stop making love. Your openness about holding on to your desire to keep this part of your life intact is something I strongly relate to.”

“These types of experiences are what cause people, both men and women, to become all that they can be. Without this type of deep self-examination, we can never be fully alive—and who wants to be half alive?”

Thank you all for your insight and openness. Together we can take the title of the article and throw it on its backside, for this is no longer a cancer no one talks about. As one fellow cancer survivor told me, reading my words made her feel less alone. Having been graced by all of your words, I couldn’t agree more.

Two weeks prior to my surgery, Larry and I sat before my doctor, David Fishman, M.D., as he outlined a plan of action. He drew a diagram of my vulva and carefully explained each step of a simple vulvectomy. Simple? Hmmm, who made up that term? I knew, having sat up for nights surfing medical texts, that a radical vulvectomy is the removal of tissue down to the pubic bone. Simple means, simply, the removal of the vulva. Which procedure you have is determined by how invasive your cancer is. Given that my cancer had been excised along with my right inner labia lip, Fishman believed that a simple vulvectomy would remove all remaining abnormal tissue (some of which tested pre-cancerous) and prevent any future trouble, including an occult malignancy. He was right, as a future pathology report would prove (micro-invasive stage-one cancer on the left outer labia). But at the time, my focus was not on what could happen but on what was happening; a surgery that required my attention. I listened to Fishman’s steady voice, a calming tonic to my inner turbulence.

“A day before the operation you will need to do a bowel cleanse…nothing to eat or drink after noon….after the operation, you will be in the hospital for a few days. Since a small piece of your urethra will be removed, you will have a catheter. Once you prove you can pee on your own, you will be sent home. You may be peeing on an angle for a while but that can be corrected. No cardio exercise till you are healed.”

WHAT? No exercise? My heart raced with dread. Worse than the surgery, the hospital stay, and the slanted peeing was the thought of no exercise. It is my head therapy, which, after the surgery would be a necessity. I swallowed hard and asked (maybe it was a whine), “Can I please walk?” My voice trembled with anticipation, an addict in need of an easy fix. Fishman looked at me, then Larry. “Don’t go overboard, or I’ll call the police.” I promised to be good.

Two days after I got home from the hospital, I walked around the block. The next day, two blocks. Within a week, I managed oh so slowly five blocks. I came home, exhausted, as if I ran a five-mile race. The next week I vowed to get up to 10 blocks. And so I did. I went to the park and walked with headphones on, jealous of the sound of joggers beside me then ahead of me. It’s okay, I thought. You will be back with them in no time. Just walk. A half mile slowly yielded itself to a mile. It took me an hour but I didn’t care. I did it. My brain needed that knowledge as did my new vulva, stitches and all.

What I knew is that without exercise I would become flabby in the thought department. My spiritual muscle would weaken along with my determination to get stronger. I would lose that essential flexibility and tone, which gets me through the toughest of times. Though it took me hours to walk what I normally could run in 30 minutes, I celebrated each step with another mile. And with that, a quicker recovery.

When I visited Fishman for my two-month post-operative checkup, he smiled. “Whatever you’re doing is working. You look great.” I slid out of the stirrups, put on my sneakers, and walked through the park, en route to the subway.

Second Blog for Redbook:

It was five weeks  after surgery to remove and reconstruct my vulva— and life in the Picoult-Ford household was back to normal except for one tiny fact. A large elephant had taken residency in our bed and was snoring loudly.
I covered my head with pillows, drank cups of sleepy time tea, downed melatonin, but as each night passed, the elephant grew more comfy and I grew more tired. I knew I had to take the beast by its ears and confront what I was trying hard to avoid; I wanted Larry to see the results of my surgery, scars and all. Sex was off-limits until my doctor’s clearance, but looking was allowed and at that moment, very needed. We talked about the surgery and subsequent pathology report — how a small cancer was found and completely excised — and what to say or not to say to the girls, and how grateful we were to my doctor, and every other thought related to the operation. But what about my body’s current physical state?

Wasn’t he even curious about what my new vulva looked like weeks after the surgery? That was the intimacy we’d always shared.

How do I tell him this gently given all he’s done for me? I began by purchasing his favorite bottle of wine. The next night I scheduled a dinner date at our dining table. The girls were in bed having had an early dinner, ice cream, and a movie.

I tossed the salad, poured the wine, and set out bowls for pasta. We talked about his photography work, my newest script idea, and then delicately (okay not so delicately, given the tears that flowed), I brought up the elephant. For a moment there was silence. He told me that he did see the surgery in the hospital. But that was weeks ago, I insisted. “I’m less swollen, the stitches are coming out…I look almost normal, sort of.” His face reddened as he struggled to explain. “I do want to look, but seeing you like this…seems so clinical.” This time my face reddened. “It’s not clinical, it’s part of my body, it’s who I am.”

I told him all that and more. I wanted to satisfy him, I felt bad that I hadn’t been a great sexual partner particularly since he’d been such a trooper, deserving of many medals, but the surgeries zapped my desire. Was that selfish? I thought so. I told him what I fear the most: that my clitoris will be removed because of the abnormal tissue that surrounds it and my recent diagnosis. I told him that a friend and I joked that I could call it “clitor-isn’t.” We sipped our wine. I told him what another friend said, if that were to happen: “It’s only a sensation. This is your life.” I wanted him to share every crevice of that experience.

That night, Larry sat on the side of the bed and requested a look. He tilted a small lamp toward my pelvis to give him a better view.

My eyes filled with anticipation.

“It looks good. You look really good.”

A quiet moment passed between us, a connection to the history of my body and our lives together. That night I slept to the sound of Larry’s breath; the snore of an elephant no longer between us.

My first blog post for Redbook:

Sensation is returning. Slowly but surely my nerves are regenerating. A cause for celebration, the human body reviving itself. Some get a new heart and it beats, a new limb and it moves. In my case, a new vulva and it feels. Am I excited? You bet. My doctor? Ditto. And my husband, Larry? Did you hear trombones playing all the way from our house in Brooklyn?
But what I really want to talk about is another set of nerves and feelings. The nerve it took to write that original article and the nervousness of seeing it in print.What did I do? I thought. Everyone will know the most intimate details of my life. My relatives in Texas, my acting students at New York University, strangers on planes who pick up the magazine at airport newsstands during the holidays. I envisioned people on the street pointing and whispering, “There’s the vulva.” As if that was it. That was me. One big vulva. And then I took a breath and thought back to why I wrote the article in the first place.

When REDBOOK’s editor-in-chief, Jill Herzig, asked me to write about my medical ordeal, my initial thought was No! Then yes. Then no. Then, of course. Why not? If not me, then who? One doesn’t talk about her vulva or vagina publicly, unless perhaps it is in the context of a great night or in a monologue by Eve Ensler. But diseased? That’s for medical books or diary entries, or whispered in the privacy of one’s home. My decision to unlock that door and invite you into my life was to give a voice to that whisper.

A whisper I encountered during my first set of surgical biopsies when an attending nurse brought me to her desk. After I stated my name and showed my ID bracelet, she asked, “Do you know why you are here?” I nodded. “To have surgery. Biopsies on my—” The nurse leaned in and whispered, “You don’t have to say where.”

Late that afternoon, after I proved I could pee, Larry drove me home. I called one of my daughters from the car to let her know I was fine. She was at the opening night of a Children’s Film Festival with her friend Ruby. “Mollie, it’s Mama.” Her voice is soft. “Mama! Where are you??? At the hospital?” ”I’m coming home, baby.” She mumbled something into the phone. “Moll, can you speak up?” A faintly louder mumble. “Mollie, I can’t hear you darling.” Again a mumble. “Moll…” Then at the top of her lungs in her Brooklyn accent, “DOES YOUR VAGINA HURT?” Silence descended around her in the lobby.

For months I stood on the edge of that silence, observing what was happening to me, my body, and my family. And then, I jumped in fingers first and began to type. Writing has always been my compass, a way to navigate through uncertainty. By placing myself on the backs of words, I could dive into a question and wrestle it to the ground, transcend the impossible by becoming whoever I needed to be. When I was 12 and had my first surgery to remove a pre-cancerous spot from my vulva, I became Nancy Drew in my version ofThe Clue in the Crumbling Wall. Years later, I was Julie in a play I wrote called My Virginia, a composite character inspired by the stories of DES daughters who have had vaginal cancer. And now, I am Darci Picoult in my own story. No longer once or twice removed by a character, but me: fully exposed, fully nervous, and fully alive.

For all those that don’t get Redbook and want to read my article and subsequent blog (posted a week earlier than I thought) go to–

http://www.redbookmag.com/health-wellness/advice/vulvar-cancer-essay

The response has been amazing from women and men. I am so grateful for their responses and to Redbook for giving me an opportunity to write about a cancer few could even name outloud…including a nurse (read the blog).

To all, a healthy happy holiday and new year.

The Redbook article will be hitting newsstands on December 21st. I will also be writing updates on their website beginning December 28th.