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Authors: Robyn Michele Levy

Tags: #Health

Most of Me (24 page)

BOOK: Most of Me
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Look! Up in the sky! It's a bird. It's a plane. It's Dopamine Agonist!

Built to restore the brain's depleted dopamine signals, this childproof-capped crusader fights the never-ending battle for improved coordination, mobility, and speed. And after just three weeks of taking this stuff, I'm starting to believe in its superpowers. Miraculously, my left shoulder is no longer frozen, and I have a bit more control of my limping leg. Sadly, my left hand remains stuck in an awkward “hand job” position. I'm aware some might consider this a windfall, depending on one's profession. But since my pole-dancing days are over, I'm hoping Dopamine Agonist will help relax my curling fingers, making my life a little easier (and a lot less embarrassing).

Of course, every superhero has a dark side. And Dopamine Agonist is no exception. When prescribing this medication, Dr. Stoessl listed the common side effects I might expect: nausea (tapering off), hallucinations (not yet), drowsiness (definitely), twitching (occasionally), and lightheadedness, especially when standing up (sometimes). He also took great pains to warn me of several unusual adverse effects of this drug including compulsive gambling, excessive shopping, overeating, cross-dressing, and hypersexuality. I assured Dr. Stoessl that I'd be on the lookout for the slightest sign of trouble, and if something strange happened I'd call his office immediately. But would I? Some of these side effects sound so exciting. And considering all I've been through, don't I deserve just a little fun? Especially the kind I can blame on my medication . . .

ZOË AND
I make plans to get together at the dog park close to her house. These days, we e-mail regularly, but it's been years since we actually saw each other. I have a feeling we're both in for a shock.

Nellie and I arrive first, and we meander about. Then, off in the distance, I see a dog chasing after a ball and a person trailing behind. A hand is waving back and forth in the air. That must be Zoë. I wave back and whistle for Nellie. She runs to my side, and we walk toward Zoë and her dog. Then we hug hello, while our dogs get acquainted.

“This is Sadie. She's very gentle,” Zoë says, bending down to pat Nellie. Not quite convinced, Nellie looks over her haunch at Sadie sniffing at her tail.

“She's a bit nervous. Big dogs intimidate her,” I explain.

“That's understandable,” Zoë says, scratching my pooch's head.

Zoë throws the ball, and much to Nellie's relief, Sadie stops sniffing her and runs off. Nellie sticks close to me, while Zoë and I swap war stories: She tells me about her metastasized cancer, continuing chemo treatments, side effects, and personal challenges; I tell her about my Parkinson's symptoms and medication, my oopherectomy and instant menopause.

As we talk, I am painfully aware of how thin and frail Zoë is—the chemo has whittled her down to skin and bones and fleeced the hair off her head. I am also aware that Zoë is observing me—and my own physical failings.

When Zoë is ready to head home, we hug once more and call out for our dogs. They come trotting back together, like old friends. Saying good-bye, I am struck by how easy it is to reconnect with Zoë after all these years. We've always appreciated each other, but our connection is deeper and more visceral now that both of our strong, healthy bodies have been snatched away.

THESE DAYS
, everything is growing: the stacks of health books on my bedside table; the delicate snowdrops and crocuses dotting neighbors' yards, and the sexy black hairs on my unshaven legs. Even my comfort level with my missing breast is changing. She departed August 6, 2008, almost eight months ago. All I have left of her is a sloping horizontal scar across the right side of my chest. It horrified me in the beginning. Catching an accidental glimpse of my scar in the mirror, as if it were a stretched-out sealed mouth, muffling screams of terror, would reignite my depression. But today things are different. Horror has subsided. And the scar, which now resembles the rim of a giant eyelid, triumphantly winks at me when I undress. Sometimes I wink back, tentatively. Sometimes I don't. Always I wonder about other breast cancer survivors and what they see in their mirrors.

I know many breast cancer survivors now. Most of them have had, or plan to have, reconstruction surgery. But there are other women with vacant lots, just like Zoë and me. There's even one in our neighborhood. Susan introduced me to her when we were walking Nellie one day. Her name is Corry, and she's a retired kindergarten teacher who loves to garden and travel. As we chatted away, it occurred to me that between the three of us, only two tits remain intact. That's two out of six. One is mine, the other is Corry's. She had her mastectomy ten years ago and never wanted reconstructive surgery. Soon after recovery, she got fitted for her very own Dolores, but eventually she got fed up wearing the prosthesis. So she embraced life as a conspicuous “one-boob woman.” Life embraced her back. Family, friends, and colleagues grew accustomed to her asymmetric landscape. And she grew more grateful and compassionate.

I admire Corry. She is one of my “breast whisperers,” a wise guide along this emotional path of loss, mourning, and acceptance, welcoming me into the alternate “one-boob” universe.

Such a peculiar place . . . unexpected . . . imperfect . . . lopsided . . . surreal . . . Home.

LIKE IT OR LUMP IT
, I limp. A lot. In fact, I'm so used to limping, I often forget I'm doing it. Luckily, people remind me—mostly strangers, sometimes friends who haven't seen me in a while. They ask polite questions such as, “Twist your ankle or something?” or “What's wrong with your leg?” I have my arsenal of answers. Depending on my mood, I might go for accurately mysterious: “I have an incurable neurodegenerative brain disease. Guess which one.” Or mysteriously accurate: “My sub-stantia nigra is depleted of dopamine.” Or I might cut to the chase and declare, “I have Parkinson's disease.”

You'd be surprised how people react when they hear that. I get everything from “But you're way too young to get Parkinson's!” (I'll be sure to inform my neurologist) to “What a shame, I'd hate to have that.” More sensitive remarks include “That's a good way to get out of doing housework.” Or “You must have done something really bad in a previous life to deserve this.” The worst is over-the-top compassion from old friends or colleagues. They seem so devastated by my news that I end up consoling them.

“There, there. It's not as bad as it seems. There are worse diseases to get. At least it's not
ALS
or flesh-eating disease or late-stage leprosy.”

This usually cheers them up, but not me. That's because I know how easy it is to diversify one's disease portfolio.

At the dog park the other day, a gentleman shuffled toward me and said, “I just had a hip replacement, how 'bout you?”

Feeling evasive, I told him, “I'm training for the O-limp-ics.”

He gave me a puzzled look, so I repeated, “The O-limp-ics.”

“Ah, I get it,” he smiled, rubbing his sore hip.

Another question that people frequently ask me is, “How did you get Parkinson's?” Variations on this theme include, “Is it genetic?” or “Was it something you ate?” or “Is it caused by a virus?” or “Were you overexposed to pesticides or senior citizens?” All excellent questions—in fact, these are questions I've asked myself and my doctors too. Unfortunately, I have what is known as idiopathic Parkinson's disease. And although getting this disease at my age is idiotic, “idiopathic” simply means the cause of the disease is of uncertain or unknown origin. In other words, “I don't know.” Not a very satisfying answer, which is why I sometimes say, “I got Parkinson's disease from walking my dog in the park.” Or “Parallel parking gave me Parkinson's.” Either answer is a crowd pleaser. But more important, it changes the topic of conversation to something other than my health.

SPRINGTIME IS BIRTHDAY
season in our house: first Naomi's, then mine, then Bergen's. Naomi celebrates her fifteenth birthday with a small gathering of friends. They cook dinner and clean up, then watch horror movies. Thankfully, most of them go back to their own homes to sleep. The remaining few spend the night here. It's all very civilized.

A few weeks later, Bergen and I throw ourselves a birthday party, celebrating our combined age—one-hundred and eleven years old. Miraculously, neither one of us is wearing dentures or diapers. This is a great relief to our friends. Not that they were necessarily expecting more misery to be visited on our family, but it wouldn't have surprised them either. When they ask me how I'm doing, I see them brace themselves for the worst. So I assure them that I don't have any new diseases or the need to have more body parts removed. Thankfully, they seem to believe this—more than I believe it myself.

When everyone has left, Bergen and I begin cleaning up the mess.

“I'm glad we had this party,” I say. “It was fun.”

“Me too. We used to have lots of parties.”

“I used to have lots of brain cells. And more energy.”

“You did great today. Why don't you go relax? Let me do the rest.”

And with that, I head off to the family room and turn on the
TV
, just in time to catch Craig Ferguson's opening monologue.

MY FRIENDS CONTINUE
to sustain me with their regular phone calls and visits. One day, Gloria arrives to take me to the spa. No matter where we go or what we do, going out with Gloria is always fun. She is playful and passionate—the life of the party. And she has a knack for knocking on opportunity's door. She once turned a girls' night out into a
VIP
adventure that kicked off with six of us sipping champagne in a stretch limousine while we rode through Stanley Park and ended up at her friend's upscale French bistro, where the food and wine were exquisite—and on the house.

Her optimism is irrepressible. While walking through a rough neighborhood that was on the verge of gentrification, she nonchalantly stepped over a puddle of vomit while extolling the virtues of a beautiful dress in a shop window.

She is also kindhearted and goes out of her way to put everyone at ease. Even Nellie, who goes bonkers whenever the doorbell rings. On this day, when I answer the door and Gloria steps inside, she gives me a warm hug and Nellie a warm foot. To lick. It works like a charm—instantly, the barking stops and Gloria's eyes glaze over.

Eventually, I say, “What time are the appointments?”

Gloria sighs. “In half an hour. I guess we should get going, huh?”

And with that, she reluctantly pulls her damp foot away from Nellie's pink tongue. “Now I'm really ready for a pedicure,” she says.

We drive downtown to her friend's spa and sign in at the reception desk. I present the gift certificate that Gloria gave me for my birthday, and the hostess hands each of us the standard cult outfit: a plush white terrycloth robe and plastic reflexology sandals.

The change room is downstairs. Our lockers are side by side. I feel terribly self-conscious while we undress.

“You haven't seen my scar yet, have you?”

Gloria shakes her head no, and my eyes well up with tears.

“You don't have to look, if you don't want to,” I tell her, unhooking my mastectomy bra, where Dolores resides. “It's quite shocking.”

“I don't mind. It's just a scar,” she says.

I catch a glimpse of Gloria, in one of the mirrors, viewing my vacant lot. “I warned you—it's not very pretty,” I say. “It's so strange, only having one breast.”

Unflinching, she gazes down at my chest, then looks me straight in the eye and announces, “Your left breast is pretty enough for the two of them.”

“Thank you,” I whisper, doing up my robe, repeating her words over in my head. She says it with such conviction that I want to believe her. So does my left breast. And so we do, all day long. And when I come home, I feel pretty—from my toes to my tit.

I also meet Sue and Cheryl for dinner at a local restaurant. Dining out with breast cancer survivors is not for the squeamish. When I arrive, the hostess says, “Your friends are already seated. Follow me.”

As we snake our way through the room, I notice two women waving at me from a corner booth in the back. As I get closer, their bald heads come into focus, and I feel thankful I dodged the chemo bullet.

It has been a while since we'd last seen one another, so we have a lot of catching up to do. We kick off the evening with polite hellos and casual chitchat about parking spots, hairdos, holidays, and work. Then our conversation shifts from the mundane to the morbid, transforming the elegant ambiance of our dinner table into the clinical atmosphere of an operating room. The kind of circumstance you'd think would ruin most people's appetites. But not ours. We are seasoned survivors, instilled with an insider's knowledge of medical treatments, comfortable in our modified bodies, which at the moment happen to be very hungry.

Between bites of salad, sips of soup, and nibbles of grilled chicken and tiger prawns, we yak our way through the following: double and single mastectomies, the distress of having internal surgical drains removed, breast-reconstruction procedures, surgical removal of ovaries and fallopian tubes, excised lymph nodes. In graphic detail, we cover all these topics and more, while our friendly young waitress refills our water glasses, repeatedly asking us if we are enjoying our meals. I am tempted to ask her if she is enjoying overheard snippets of our conversation. Perhaps she's caught wind of Sue's descriptions of the art of tattooing a new areola, or the incremental process of inflating breast expanders. Or maybe Cheryl's confession about the sexy side effect of chemo—a waxless Brazilian. But when our waitress flashes us a smile, revealing shiny dental braces, I am struck by her innocence. I even feel protective of it and refrain from asking her anything.

BOOK: Most of Me
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