I Had the Cancer No One Talks About
After extreme gynecological surgery, writer Darci Picoult dug deep and found a whole new level of intimacy.
A week after the biopsies, I'm waiting in an exam room in my oncologist's office when he pokes his head around the corner. "Great news, pal," he says. "All the biopsies came back negative. No cancer." I throw my arms up and shout, "Yes!" eager to jump off the table and forget this ever happened. But it's not so simple; I have still more strange spots. He asks me to think of my vulva as a garden, the abnormal areas being dandelions: "We may need to pull those weeds later, but for now, you're cured." That night Larry and I sit down to dinner and a bottle of wine to celebrate my cured garden. We talk about everything except my vulva, given that it has usurped our conversations for months. Then we clean the dishes, check on the girls, who are fast asleep, and head into the bedroom. We haven't made love in more than six weeks. The excisions had left me feeling mutilated and undesirable - but the craving to be touched and to touch overcomes my nervousness. We start tenderly, Larry questioning every move: "Does this hurt?...This?" I assure him I'm okay, despite a slight burning. I need to know I can do this, have this physical connection to my husband and to myself.
Nine months later, I discover a new growth. After a biopsy shows this one is pre-cancerous, my oncologist recommends a vulvectomy - a complete removal of the vulva. He will remove what is left of my labia, plus a small portion of the entrance of the vagina and tip of the urethra. Then he'll reconstruct the area using tissue from my thighs. The hospital stay will be a few days, recuperation is six weeks.
I tell Mollie and Olivia that I need more surgery, and we plan special mommy-daughter days so I can answer their questions. Mollie opts for Tim Burton's Alice In Wonderland and then dinner at a neighborhood pub that makes homemade mac and cheese and Brussels sprouts, her new passion. We talk about the movie, the yummy fried chickpeas they place on our table, and then my surgery: "What are they going to do now to your vagina?" I explain that my doctor is removing skin from the area outside of the vagina called the vulva. Mollie looks confused. Then lifts her little finger. "You mean if this is your vagina, your nail is your vull-vaa?" She giggles. I laugh too and nod, impressed by her analogy. "Mol, I want you to know you can say anything you want to anyone about this," I tell her. I wait for her to respond. "Okay?" Mollie flattens a chickpea with her hand. "Mom, I would never say anything. Especially to the boys in my class. All they talk about are their balls." I gulp my water. And continue: "As soon as I'm able to, I'll start walking you to school again." A long pause follows. "Mom? I don't really want you to take me to school if you're walking funny. It'll be embarrassing." Understood.
Olivia opts for a day at the mall (the girl loves to shop), then a Japanese restaurant for sushi. After we order, she leans forward: "Mom, I have to ask you something really personal." I take a breath, "Anything you want." "Do you think I'll get my period this year?" So that was it. "I do, but I can't predict." "Just guess. When? Next month? In two months?" This becomes the centerpiece of our discussion for the night - her budding sexuality, need for a bra, and curiosity over what is happening in her body. Any questions about what is happening in mine are put aside until dessert is served. "Mom, do you think you're going to need pads after your surgery? If you do, can I use some of them?" I'm relieved that what I'm going through with my most intimate parts doesn't seem to have made her afraid of her own - and so happy that Olivia is centered on herself right now, as she should be.
As the day of the surgery approaches, my nerves are keeping me up at night. How will I be able to walk? Sit? Have sex - ever again? What will I look like? Will Larry even want me anymore? My panic escalates and I call my doctor, who talks me through the surgery again, gently telling me what he is going to do - and why. His final words echo in my mind: "Remember, you had cancer."
I know that after surgery, sex will be off-limits for six to eight weeks, but it's everything I don't know that propels my desire to make love now. I worry about whether the reconstruction will work, and if I'll still have sensation. I get to keep my clitoris, but what if nerves are cut? I shove these thoughts beneath the bed and climb in next to Larry, eager to grab hold of him and not let go.
In the waiting room the morning of the surgery, The View comes on the television - Courtney Love is the guest. So there I sit, watching a former stripper sing, moments before having my vulva removed. Thoughts boomerang inside me: Every story line on TV revolves around sex. But what about those of us who can't make love? What if your sex drive is in reverse because in a place that should be divinely pleasurable, you feel pain? Isn't there anything that defines intimacy beyond throbbing bodies? Everywhere I look makes me feel less like a woman. And yet. I know there is something bigger, something more. My "womanhood" has nothing to do with my vagina, it is in me - in my nurturing of Mollie and Olivia, my work as a writer, my love of Larry. I repeat this to myself as I see my doctor approach.
"It went great," my doctor reports, with a deeply dimpled grin, once the surgery is done. He requests a mirror from the nurse and places it between my legs. I lift my head slowly, terrified by what I am about to see. There are lots of blue stitches - but my vulva looks almost normal. I look at my doctor, unable to speak. A moment later, Larry walks in. The doctor hands him the mirror, "Take a look at your wife!" The room goes silent. Larry puts down his backpack and leans in. His left eyebrow pops up, and he smiles. For days, doctors and medical residents drop by to see me. "Fascinating. Unique. Of real interest." Reviews I would want for my plays, but they're talking about my vulva.
I'm able to go home a few days later, but walking is still difficult (imagine John Wayne on downers) - and sitting is only possible with the help of a large blue pillow I lovingly call my "cloud." Mollie is the first to ask to see the results of my surgery. For years I had worked to create a dialogue of openness around my body and the girls', one without shame or embarrassment or fear. If I say no, won't she always wonder what I was hiding? Still, how many 8-year-olds have seen their mother's vagina that close up? Particularly one with stitches? "Okay," I say, my stomach in a knot. I lift up my skirt and pull down my underwear (extra large for comfort). She giggles. "Looks like a vagina to me!" Then, without taking a breath, "Do you have any gum?" Olivia's request comes when I'm stepping out of the shower later the same day. "Wow, you have blue stitches. Other than that it looks just like mine."
When I check myself, I see something different. Though on first glance my new lips appear remarkably normal and healthy, there are no layers or definition. And there is a clear view straight into my vagina and even of my cervix. I am both fascinated to glimpse the inside of me so clearly and devastated to look so exposed.
Almost four months after the vulvectomy, my doctor gives me permission to resume all activities. Given that I have already gone back to bathing and running, I know that means sex. I call Larry immediately and set an appointment for that night. I feel a mix of excitement and nerves - more than 20 years into our relationship, I can't help but smile at these emotions. After a good deal of laughing and kissing - mostly laughing, both of us acting like teenagers - Larry turns out the light. My stomach tightens in anticipation of the first touch. I feel something, muted but there, in my clitoris. I take a breath and try to relax, desperately wanting my body to work. His desire intensifies, as does mine. For the first time in years, there is no discomfort, no burning, no pain. This is great, I think, great. Then my heart stops: I don't hurt, but I don't feel much of anything. There's no pressure or stimulation. I am deeply connected to him mentally and emotionally, but physically I am numb, void of sensation.
Will physical feeling return? I don't know. Will my clitoris remain cancer-free? This too I don't know. What I do know is this: Though I have lost a part of my body and certainty about my sexual future, I gained a closeness to my girls and to Larry that has empowered us as a family. This year has redefined who I am as a mother, a wife, and a woman. Mollie and Olivia know they can ask me anything. Larry knows he and I can meet the scariest of times head-on. No matter what happens (or doesn't) in the bedroom, we will always have intimacy, strength, and love.