I do not feel like a failure.DECEMBER IS OVER. The forecast calls for flurries of sawdust and trips to the hardware store. Expect low-pressure visits with friends followed by unsettling postponements of surgery. There is a 50 percent chance of going to the Overbites’ debut performance. Flossing advisory in effect.
Holiday celebrations fell through the cracks this year. There was no Christmas tree or Hanukkah menorah, no roasted turkey or potato latkes. And instead of buying each other gifts, we agreed to splurge on one family present: a big-screen TV. This sounds deceptively simple, but it wasn’t. And it’s all because of Hildi.
When she was here in the summer, Bergen asked for her professional opinion about our unfinished family room. In a matter of seconds, Hildi told him what to do: “First, rotate the couches 180 degrees, so they face the fireplace, not the back wall. Then renovate the hideous fireplace. Make it simple and classy. And install a flat-screen TV above it.”
Bergen’s face lit up with joy—Hildi’s advice was more than music to his handyman ears; it was the authoritative voice of an angel commanding him, “Go forth and renovate.”
He started the very next day and has been at it for months. Tearing out the ugly old bricks. Building a custom cedar mantel with shelves. Installing sleek black tiles. Insulating the wall. Doing the electrical wiring. Shopping for a TV. Installing it above the fireplace. It’s not even finished, and it looks fabulous. So does Craig Ferguson on a fifty-inch screen.
The day before my surgery, the hospital calls. Apparently, I’ve been bumped. They reschedule me for the following week, and I get bumped again. Now I have to wait another three weeks. I feel as fragile as the eggs in my ovaries. I wish the surgery was over easy.
The next three weeks I try to keep busy. There’s shopping with Gloria; dinner with Linda one night and Brian and Gillian another; lunch with Joey; visits with Diana and Betina. There’s also massages with Jessica, electrolysis treatments with Diane, a checkup with Dr. Mintz, a follow-up with Dr. Chung, and an appointment with Dr. Young, my psychiatrist. I see him every two months or so—not for therapy—just to monitor my mood and prescribe my antidepressants.
When I arrive at his building, I experience elevator amnesia. I go up and down so many elevators I can’t remember which floor he’s on. The office directory is in the lobby, mounted on a wall. It’s a large silver metal board, and all the names and organizations are stenciled in black. At the top I spot the first three letters of his name: Dr. You. Fourth floor.
“How’s Robyn today?” he asks.
“I’m doing OK,” I answer. “How are You?”
“Fine, thank you.”
“I see you’ve changed your name.”
“How so?”
“You’ve lost your N and G on the building directory. It says Dr. You.”
“Oh, that,” he sighs. “Someone picked off the letters.”
“Are you going to replace them?” I ask.
“Nah, why bother?” He sighs once more. “Someone will only pick them off again.”
I’m about to say, “That’s the saddest thing I’ve heard all day,” but he changes the subject. “How have things been going since I saw you last?” So I brief him about the delayed surgery, my trip to Toronto, and Dolores. And we talk about my moods and my meds. When it’s time to go, he hands me a refill prescription, and I take the elevator down. Poor Dr. You, I say to myself, walking past the directory. Maybe next time I’ll bring him the letters N and G.
EVEN THOUGH BERGEN and I live in the same house, sleep in the same bed, listen to the same radio programs, and read the same newspaper, sometimes it feels as if we’re living in different worlds—physically, mentally, and emotionally. While this isn’t surprising (I have Parkinson’s disease, after all), it is still shocking to discover new barriers that restrict my access to his world—the world we once shared.
The latest barrier appeared the other day. Bergen had gone shopping and came home with a brand-new set of matching plastic food containers. It was the industrial design of the lids that sold him: hinged flaps on all four sides, guaranteed to lock in freshness and prevent leaks. We used them for the first time after dinner. While he filled one of the containers with leftover pasta, I filled another one with leftover broccoli. He closed his lid, and I attempted to close mine. But my fingers couldn’t exert enough pressure, let alone find the right position, to force down the flaps.
Trying to be helpful, Bergen offered me advice on how to use my mechanical advantage. Trying to be hopeful, I followed his advice, clumsily grasped the lid, and fumbled some more. Then I did what any self-respecting forty-five-year-old woman would do—I burst into tears.
“There, there,” Bergen consoled me, hugging me tight.
“You forgot about my fingers,” I sobbed.
“I know. I’m sorry.”
“Me too,” I said, glaring down at the open drawer of perfectly stacked matching containers. “I hate this fucking disease! And I hate these fucking containers!” I kicked the drawer shut with my good leg, then stepped into the bathroom and blew my nose. To my horror, high-pitched honks wailed out of my nostrils, as loud and obnoxious as those noisemakers people toot on New Year’s Eve.
“What was that sound?” Bergen called out.
“Me,” I answered, looking at myself in the bathroom mirror, tears streaming down my face. “It’s my Tupperware party and I’ll cry if I want to.”
VALENTINE’S DAY is fast approaching, and if everything goes according to plan, I know exactly what I’m getting. Nothing predictable like decadent chocolates or slinky lingerie. And nothing pampering like a day at a swanky spa. Nope. This Valentine’s day I get “bed rest and morphine.” That’s because on February 12 a surgeon will remove my ovaries and fallopian tubes. A procedure I’m told is quick and easy and safe, highly unlikely to result in any accidental damage to my adjacent vital organs (listed in the hospital waiver I signed in triplicate).
The clinical term for this operation is “oopherectomy,” but it sounds really sexy when you pronounce it with a heavy French accent, as in “OOff-urr-eck-tum-mee.” Of course this leads to instant menopause, but that’s sexy too, right?
I have three friends who have survived this life-altering operation. The first is Zoë. When I asked her how this surgery affected her, she said life in the instant menopause lane was hell for about three years. Sue is the second friend, and she, like me, was diagnosed with estrogen positive breast cancer last year. She had her oopherectomy one month ago. Sue told me the operation went well—that is, until the surgeon inadvertently nicked her bladder. Fortunately, she recovered not only from this surgery (and fluke accident) but also from a double mastectomy a couple of weeks later.
At this point, it would only be natural to be filled with trepidation. But thanks to my third friend, who happens to be my spayed dog, Nellie, I’m feeling optimistic. Not only did she survive an oopherectomy and a hysterectomy, but she also survived an entire week of public humiliation wearing one of those obnoxious plastic lampshade cones around her head. Something I hope to avoid. After all, unlike my dog, I will promise my doctor not to lick my stitches.
But life doesn’t always go according to plan. My surgery date might get bumped for the third time, thereby leaving my reproductive organs intact a little longer. Or Dr. Gregory House might reach out from our fifty-inch plasma TV screen, pull me into his cantankerous diagnostic world, and perform my oopherectomy strung out on Vicodin, after which we go limping off together into the high-definition Hollywood sunset. Either way, one thing’s for sure: compared with coping with Parkinson’s disease and breast cancer, instant menopause is sure to be a breeze.
THE HOSPITAL didn’t bump me. It’s all systems go. I know the preoperative drill: put on the gown; get poked, prodded, and primed; remind Bergen of my final wish.
“If I die, promise me you’ll burn my old diaries—if you find them.”
“I promise,” he says, squeezing my hand. “And you’re not going to die.”
My Cry Lady is on standby; she’s waiting for her cue, holding a white tissue in her hand. She waves it in surrender when a dark-haired doctor walks in.
“Hello, I’m Dr. Mazgani. I’ll be performing your surgery.”
“Hi,” I say. “You’ve done this before, I hope.”
“Many times,” she assures me with a quick smile.
Her face is round and friendly. Her hospital scrubs fit like pajamas.
She touches my shoulder, looks me in the eyes, and says, “We’re almost ready to begin.”
A hospital orderly appears by my bed and unlocks the wheels one by one, and then I’m rolling slowly away with Bergen’s kiss, down a corridor, into an operating room. Au revoir, ovaries . . . Farewell, fallopian tubes . . . Parting—with more parts—is such sweet sorrow.
I WAKE UP groggy and sore and stiff as a board, with nurses on one side and Dr. Mazgani on the other. She leans over me and says, “Hi, Robyn. Everything went really well.”
“Great,” I groan, feeling slightly nauseated.
“Where’s Bergen?”
“He’s on his way,” she assures me.
I drift in and out of consciousness, catching snippets of conversation. Something about someone with low blood pressure. At some point I open my eyes and see Bergen smiling. “I told you that you wouldn’t die.”
What a relief—I’m not only alive, I’m still recognizable.
“How do I look, now that I’m down to one tit and a uterus?”
“Beautiful,” Bergen says.
Compared with a mastectomy, an oopherectomy is minimally invasive. I imagine it’s like being probed by aliens. A tiny wandlike camera—called a laparoscope—is inserted into the abdomen through tiny incisions, and then the ovaries and fallopian tubes are fished out. This procedure is considered day surgery, and patients are generally sent home a couple of hours after recovery. But not me. My blood pressure is quite low, so they keep me in hospital until it rises enough that I don’t faint when standing up. It’s the end of the day when I’m finally discharged.
WE’VE ARRANGED for Naomi to sleep at a friend’s house tonight to spare her from seeing me in this decrepit state: Tin Man stiff, depressed as hell, watching TV while waiting for the painkillers to kick in. Bergen is cooking dinner for just the two of us. When it’s ready, he helps me walk upstairs—I’m still dizzy and shaky on my feet.
“Oh, the table looks beautiful,” I say.
He’s lit candles and plated the food. He’s even set out napkins with the cutlery. All that’s missing is a violinist. Without a doubt, this is the most romantic postsurgery dinner I’ve ever had.
I take a bite of broccoli and a forkful of rice. Bergen does the same. And then suddenly I am hit by a tsunami of emotion and burst into uncontrollable tears. Heaving sobs ripple through me. I can barely catch my breath.
“I don’t know why I’m crying,” I sputter, hoping Bergen will say something soothing to calm me down.
But then his lip begins to quiver, he slumps back in his chair, and he starts crying too. Whatever I’ve got must be contagious.
Then along comes Nellie, her big brown eyes darting back and forth, her pink tongue panting rhythmically, her stubby tail wagging with delight. The crying continues; the food grows cold; Nellie disappears. Then we hear a stream of squeaks and squawks under the table. It’s Nellie—accompanying our duet, improvising on her squeaky toy, chomping it in her mouth. The more we cry, the faster she squeaks, until we are sobbing and laughing hysterically at the same time, releasing weeks of pent-up tension and stress. Eventually Nellie drops her toy and curls up by our feet, quiet and content—our cue to settle down and finish dinner.
RECOVERING FROM this latest surgery is easier than last time—at least for me. But not for Bergen. Even though there’s no massive scar, no bloody drain, and no new damage to my limbs, my body feels battered and fatigued. So I spend most of my time resting and requesting. There’s no shortage of things to ask for: scrambled eggs, almond butter on toast, chicken noodle soup, home fries, roasted chicken, beans and rice, salad and fruit, juice and tea and water. I keep Bergen busy beyond belief. And not just in the kitchen. The phone has been ringing off the hook, and Bergen is my answering machine. He’s also my doorman—welcoming visitors, accepting deliveries of flowers, gift baskets, and books.
I am so grateful for Bergen’s support. I always say please and thank you. But he deserves much more than that. In fact, had I known my expunged organs would lead to another generous shower of presents, I would have signed up at Home Depot’s gift registry. So instead of sending me “get well” roses or “speedy recovery” gourmet snacks, family and friends could have sent him “we appreciate you” power tools or rechargeable batteries or an assortment of nails and screws—anything a handyman might desire when he’s not tending to what’s left of his wife. It’s too late to register now, but if I ever require more of me removed, that’s exactly what I’ll do.
MY NEIGHBOR HELEN drops by this morning with another one of her beautiful fruit salads.
“Thank you so much,” I say, admiring the colorful mix of delicately chopped apples, pears, pineapple, banana, grapes, and strawberries.
I can see a pattern emerging: the more body parts I lose, the more fruit salads Helen gives. I’d hate to jinx this winning streak, so I make a mental note: exempt Helen from the Home Depot gift registry notification plan.
“How are you feeling?” she asks.
“Pretty good, my energy is coming back slowly.”
“Did you know that Will’s band is performing next week? It’s a Battle of the Bands fundraiser for the dentistry school student yearbook society.”
“Who are they competing against?”
“Oh, this band of young dentistry students. It should be fun.”
“I’d love to come out to the show.”
“Maybe you’ll be feeling better by then,” Helen smiles.
“I hope so,” I say. Every band needs a one-breasted groupie.
EVERYONE WANTS to know how I’m doing—I’ve got a glut of e-mails and phone calls to return. I just don’t have the energy to reply to each relative and friend individually. So I e-mail them this update:
Hi everyone.
I survived my oopherectomy and learned some valuable lessons:
1 That old expression “Never trust a stranger” doesn’t apply to surgeons. Because early Thursday morning I met Dr. Mazgani, and within one hour I let this perfect stranger (albeit a qualified one) poke holes in my abdomen and yank out my ovaries and fallopian tubes.
2 Contrary to rumors I’d heard down at the cancer agency, there is no Ovary Fairy! I know this for a fact because I tucked my organs under my pillow the other night, and when I woke up in the morning, they were still there. (I was secretly hoping I’d strike it rich, because last summer the Breast Fairy was very generous after my mastectomy.)
3 So far, instant menopause isn’t so bad—a hot flash here, a mood swing there—here a beard, there a mustache, everywhere extra hair . . .
4 I’ve kept the promise I made to my surgeon—that I wouldn’t lick my stitches—but maybe I should have promised that my stitches wouldn’t be licked. By anyone. Or anything. Anyway, I forgive my dog, Nellie, and have warned her if she does it again, I’ll take that obnoxious plastic lampshade cone off my head and make her wear it.
5 Generally speaking, I believe in free speech. But for the foreseeable future, I’ve banned that three-letter word that chickens lay from being spoken in our house. Bergen and Naomi are happy to comply, if it makes me feel better. Which goes to show there’s a sunny side up to everything. Even censorship.
6 This is my first year celebrating Valentine’s Day as a breast cancer survivor. And even though I only have one breast left, I’m grateful to still be here in this downsized body of mine, surrounded by so much love and compassion. Makes me want to stick around for more.
THE GOOD THING about having two simultaneous diseases is I’m spared from wallowing in either one too long. Following the rhythm of doctor appointments and surgical procedures, I swing back and forth between breast cancer and Parkinson’s disease.
Today I have a follow-up appointment with my neurologist, Dr. Stoessl. It was booked six months ago, and yesterday his secretary called to remind me.
“Remember,” she said, “don’t be late or Dr. Stoessl won’t see you.”
And I thought, imagine that, a doctor who goes blind when his patients are late. Poor thing. So I assured her I’d be on time, and in fact I arrive early.
Even though there are no decorations or balloons or cake and ice cream, meetings with my neurologist remind me of a child’s birthday party. That’s because there are plenty of games and activities—and I get to be the center of attention! We play “tap the patient’s impaired reflexes” and “try to move the patient’s rigid left arm.” Then we play hand-eye coordination games such as “try to touch the doctor’s moving finger” and “copy the doctor’s well-rehearsed intricate hand movements.” At this point, the partylike atmosphere turns a little sour, since I always lose and my neurologist always wins these contests. But pretty soon things brighten up thanks to the Beck Depression Inventory. Here’s a sample from this uplifting multiple-choice questionnaire:
Choose one statement from among the group of four statements that best describes how you have been feeling during the past few days:
I do not feel like a failure.
I feel I have failed more than the average person.
As I look back on my life, all I can see is a lot of failure.
I feel I am a complete failure as a person.
For the final games, we walk out into the public hallway. “Scrutinize the patient’s lopsided walk” is almost as much fun as “make the patient lose her balance but catch her before she falls.” As we return to the examination room, Dr. Stoessl smiles proudly. “You weren’t expecting me to pull you backwards so violently, were you?”
Sadly, the party is over. Instead of a grab bag, Dr. Stoessl hands me a prescription. He assures me my quality of life will improve by treating my symptoms. This will be the first Parkinson’s medication I try. Exhausted but hopeful, I pick up my winter coat and begin the slow struggle of threading my arms through the sleeves. Dr. Stoessl tries to help. This is no easy task, because my left arm is now stuck in the folds of the fabric and twisted behind my arched back. I’m feeling awkward and spastic (and a little mischievous) as my chivalrous neurologist tugs at my sleeve. Suddenly my left arm jolts violently against Dr. Stoessl’s body. Then it happens again, and again. By the time my coat is on properly, I’ve “accidentally” punched him several times. Dr. Stoessl smiles proudly again, and for the first time that day I do not feel like a complete failure.
The next day, while walking Nellie, I bump into Helen outside her house. She looks exhausted and green around the gills.
“Are you OK?” I ask her. “You don’t look so well.”
“I’m not,” she groans. “Last night was the big show. Battle of the Bands.”
“I know. I wanted to go, but I was too tired.”
“You’re lucky. I wish I had stayed home.”
“Why? What happened?” I ask.
“The music was so loud, it actually made me sick.”
“Oh, no. That’s awful. How’s Will doing?”
“He’s deaf,” she says under her breath.
“He’s deaf?” I repeat, wondering if I’d heard her correctly.
“When he woke up this morning, he couldn’t hear a thing.”
“That’s not good,” I say. “How are his hands?” I ask, hoping he hasn’t lost his ability to floss.
“Oh, they’re fine. At least his band won,” Helen mutters. “And the girls had a blast. They made special T-shirts that said: ‘My Dad’s In The Band.’”
“That’s so sweet,” I say, picturing their two-breasted, arm-swinging teenage daughters prancing around the dance floor in the shirts. Having fun, no doubt. But the medium is the message after all, and with all that wiggling and jiggling going on, I can’t imagine anyone was actually able to read the words. Which is a crying shame. If I had been there, my shirt would have read: “My Neighbor’s In The Band & In My Dreams.” And I would have stood as still as a billboard, in front of the stage, all night long, making it easy for everyone to read me. And while some might have thought I was crazy—that I’d gone overboard for the Overbites—I wouldn’t have cared. Because that’s the price you pay when you’re a one-breasted dopamine-depleted groupie.
IT’S OFFICIAL—I’m a pill popper. Every day I dip into my geriatric pill dispenser and swallow a fistful of vitamins, supplements, and prescription drugs. There are antidepressants, anti-estrogens, antioxidants, anti-inflammatories, and now anti-Parkinson’s. These little white tablets pack a punch. Classified as a “dopamine agonist,” they conjure up images of a pharmaceutical superhero:
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.
As our conversation turns to nipple reconstruction techniques, I wonder to what extent she has grasped fragments of our talk and what kind of people she thinks we are. I’d like to think her mind is so preoccupied with fantasies of some sexy movie star that she only registers enough to cast us as middle-aged, somewhat vulgar but amusing ladies, swapping operation stories. I’m sure it never crosses her mind that she might one day find herself in similar circumstances. I certainly didn’t see breast cancer in my future when I was her age. And neither did my two friends.
As dinner comes to an end and our plates are cleared and the bill is paid, I silently wish that this dreadful disease never visits our young waitress. But if it does, may she catch it early so that she too can be a survivor—blessed with the company of brave and inspiring women, like Sue and Cheryl, talking candidly about breast cancer, while eating a delicious dinner in a restaurant.
NOT ALL OF my excursions out of the house take me to spas or restaurants. Today, my left breast has an appointment at the cancer agency. She is scheduled for a mammogram and then an ultrasound. Routine tests, just to check that everything is OK. On the car ride there, I can tell she is anxious—beads of sweat dampen her underside, plus she isn’t humming along to her favorite song on the radio: Beyonce’s “Single Ladies (Put A Ring On It).” We drive in silence. I am thinking I should have worn Dolores so she’d have company. But we were in a rush, and putting on my special mastectomy bra—with Dolores tucked inside the prosthetic pocket—takes me forever. So I gave it a miss.
We arrive a few minutes early and take a seat in the waiting room. The technicians are running an hour and a half late, giving my left breast plenty of time to work herself up into even more of a tizzy. I don’t blame her for panicking, for wanting to escape. This is her first experience going solo—the previous times my right breast always went first. But as scared as she is, I have faith in my left breast’s ability to conquer her fears, especially since I slipped her a mild sedative in the change room. It’s working like a charm, and she breezes through the flesh-compressing mammogram without complaint.
Next up is the ultrasound. The technician is a sweet-natured middle-aged man, who puts my left breast at ease by apologizing, in advance, for any pain or discomfort he might cause her. As we lie waiting on the examination table, he adjusts computer equipment settings, then picks up the ultrasound wand and the bottle of gel. When he leans over my left breast, she braces herself for a chilly blast. He squeezes the bottle—and to her delight, she feels an unexpected warm gush of goop.
“Mine is never cold!” he says with a smile.
Once the ultrasound is over, we mop up, get dressed, and head home. It will be a couple weeks before the test results are in, and already my left breast is worrying about lumps and lymph nodes and latent cancer cells. She definitely needs cheering up, but I don’t dare crack any of my jokes. Instead, I go into my closet, and in record time I am wearing my mastectomy bra, listening to Dolores and my left breast giggling away. I don’t know what is so funny, but something is. And that’s all that really matters.
IT HAPPENS to so many couples—you live together long enough and you wind up finishing each other’s sentences or wearing matching jackets or growing identical mustaches. So after seventeen years of togetherness, I knew it was bound to happen to Bergen and me. But not quite like this.
After breakfast one day Bergen says, “I’ve been meaning to tell you something. It’s a little embarrassing, but over the past few days I’ve found myself dragging my left leg when I walk, just like you.”
“That’s strange. I haven’t noticed. Did you hurt your leg or foot?”
“Not at all.”
“Maybe you’re training for the O-limp-ics, like me?”
“Maybe. But I’m probably just subconsciously mirroring you, because once I’m aware that I’m dragging my leg, I can stop it and walk properly.”
“Lucky you,” I say.
Later on, we take Nellie for a walk. Sure enough, every now and then Bergen and I are limp-synching along the sidewalk until he corrects his gait for a little while, only to revert back to dragging his left foot, like me.
It’s all very amusing and disconcerting at the same time. But at least we don’t have matching handlebar mustaches.
SLOWLY BUT SURELY, I’m making a comeback. The anti-Parkinson’s medication has really kicked in—boosting my energy level, decreasing my rigidity, increasing my mobility, and, best of all, defogging my mind. I’m much more alert and productive. I’ve started helping with some chores, and I’ve dipped my toe back into the parenting pond.
Some mornings I crawl out of bed early enough to help Naomi get ready for school. Long gone are the days of brushing her teeth or braiding her hair. The role I play now is less hands-on but no less useful, considering my contribution can set the tone for her day. For instance, when she is leaning over the sink, gazing into the mirror, making herself gorgeous, I nuzzle up beside her, give her a morning hug, and ask, “Are you ready?”
She smiles and together we look at my hilarious bed-head hairstyle: where some clumps of brown curls lie flattened against my head, and other clumps of curls stick out like corkscrews.
I’ll say, “I’ve turned into Kramer from Seinfeld,” or “I was electrocuted in my sleep.”
And Naomi will say, “There’s always a punch line when you look in the mirror.”
And then we’ll laugh.
Other mornings when I wake up, she’s already eating breakfast. So I’ll walk downstairs and announce, “And now, for your viewing pleasure, the Albert Einstein hairdo.”
Naomi always looks up from the comics she’s reading and grins and groans for the show. So does her girlfriend if she’s there too. These are moments I know Naomi will treasure forever. Or not. But I certainly will. Her smiles and laughter reassure us both—that my playfulness has returned, and I’m still here. Her comeback Mama.
I’ve also started cooking and baking a little and have perfected the coconut macaroon: golden mounds of moist sweetness drizzled with melted dark chocolate. I’ve lost count of how many batches I’ve baked these past few weeks or how many times Bergen has asked me, “Are you saving any of these for our family, or are you giving them all away?”
It’s usually a combination. While I love to bake, I love sharing the treats even more. So far, my macaroon taste testers include Bergen, Naomi, Susan, Helen and Will, Zoë and her kids, Gloria, Jessica, and Naomi’s friends.
The latest batch is for Marg and her family. The cookies are still warm when I arrive at her house for tea. A caregiver greets me at the door and leads me to the kitchen.
“Look who’s come to visit you,” she says.
Marg is sitting in a chair wearing a helmet (to protect her head in case she falls), while her writhing legs perform an involuntary spastic tap dance.
“Hi, Marg,” I say, leaning over to give her a hug.
“Hi, Robyn,” she mumbles back.
“I brought you some freshly baked macaroons.”
“Thank you. I love macaroons” is what I think she mumbles in response.
I sit down beside her at the kitchen island. She is gripping an open bag of graham crackers in one gnarled hand, while her other hand fumbles clumsily about, trying to fish out individual crackers. After many fruitless attempts, she finally manages to grab hold of one and yank it out. A corner of the cracker breaks off and lands on her lap. I watch her rigid arm jerking erratically in the air until her fingers release the cracker, aiming for the baking pan in front of her. She misses, and it lands on the counter.
I’ve been resisting the urge to jump in and help, but I can’t just sit here and watch Marg struggle. So I pick up the cracker and place it on the bottom of the pan. And together we line the pan with more of them. Her caregiver is standing across from us, stirring a pot on the stove. She says, “Are you done with the crackers? Ready for the next step?” She walks over to us, sets down a bag of chocolate chips, and resumes stirring her pot. I think I detect a faint burning smell.
Meanwhile, Marg crams her hand into the bag and pulls out a fistful of chocolate chips.
“Do these go on top?” I ask her.
“Uh-huh,” she answers, concentrating on the task.
I watch her hand hovering over the pan, preparing to release the load. But as her fist unfurls, her arm jerks suddenly and the chocolate chips scatter like confetti. I leap into action, picking up the morsels that fell on the floor, on Marg, and on the counter. Then I sprinkle them over the layer of crackers.
Marg mumbles something I can’t quite make out, but her caregiver understands and replies, “Yes. I think I burned the dessert topping. Sorry.”
Marg rolls her eyes and mumbles, “She can’t bake.”
Her caregiver pours the burned mixture into the pan and pops it into the oven. Then she helps Marg over to the couch, takes off her helmet, and serves us tea and my macaroons. Her legs are still tap dancing, and I ask, “Is this the side effect of your medication?”
“Yeah. Dyskinesia,” I think I hear her say. Involuntary movements.
We talk about our neurologists, our children, and our summer plans. I have a difficult time understanding her slurred speech and frequently ask her to repeat herself. I offer her another macaroon, and as she reaches out I notice that her hand is covered in melted chocolate. She clutches the second one, raises it to her mouth, and takes a bite. Now her lips and chin are also smeared with melted chocolate. When she’s finished eating, I wipe her face and hands with a napkin and ask how her husband, Noel, is doing. Without missing a beat, Marg looks me in the eye and says, “Noel is really hard to live with.”
She is dead serious, which adds to the hilarity of this declaration. This could be me, years from now down the neuro-degenerative road. I want to laugh. I want to cry. For her, for me, for every person with Parkinson’s.
Before leaving, I head to the bathroom to pee and breathe deeply. When I walk back toward Marg, she mumbles, “You don’t limp so bad.”
I smile and say, “I’m in the honeymoon phase of this disease, aren’t I?”
Staring blankly at me, she slurs, “Yeah. Honeymoon phase.”
I wonder how long it will last.