Most of Me

by Robyn Michele Levy

  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.

  10

  Some Don’t Like It Hot

  LAST SUMMER is a hard act I don’t want to follow. So planning this year’s summer holiday requires a leap of faith (or in my case, a limp of faith) that I will not diversify my disease portfolio or discover metastatic cancer or succumb to anything tragic. If all goes well, we will entertain out-of-town guests, relax at our cabin on Saturna Island, go to some festivals in Vancouver, and visit family and friends back east.

  So far, the season is off to a good start. Naomi has attended Camp fYrefly—a groundbreaking national leadership retreat for sexual minority and gender variant youth. Or as she calls it, Gay Camp. She had a fantastic time. I’m not surprised. For the first time in her life, she took a hiatus from being an outsider in the heterosexual world and discovered life as an insider in the LGBTIQQA2SA alternative universe. When she rattles off that acronym, I test my knowledge and say, “Lesbian, gay, bisexual, transgender. I don’t know what the other letters stand for.”

  In one breath, she blurts out, “Lesbian, gay, bisexual, transgender, intersexual, queer, questioning, asexual, two-spirited, autosexual/ally.”

  “Now I know.”

  “That’s not including pansexual.”

  “Let me guess—people who like to cook and make love at the same time?”

  “Very funny. But no. Pansexual is when a person chooses to be with someone because of who they are, not their gender or orientation.”

  “That makes sense,” I say. It’s comforting to know that when it comes to sexual identity, there are so many options, so many descriptors. I bet there’s even a word to describe someone like me. And if there isn’t, I’ll invent it.

  THROUGHOUT MY LIFE, I’ve pursued many artistic endeavors: sketching, painting, animation, jewelry, collage, printmaking, sculpture, poetry, theater, stand-up comedy, freelance writing, and radio broadcasting. Not surprisingly, my creativity came to a screeching halt when I crashed. But ever since my ovaries came out, and I went on Parkinson’s meds, my creativity has been reignited.

  Writing has become my outlet—though Bergen calls it my obsession. I carry my notebook everywhere I go. And every week or so, I’ve been cheering up family and friends by e-mailing them a story about my diseases. They, in turn, cheer me up by writing back. Here is the most recent missive, followed by a friend’s heartwarming response:

  Hello everyone:

  I’m feeling popular these days. Dare I say—in demand. Just this past week, I have received three special invitations in the mail. Not to anything fancy, like swanky summer weddings or elegant cocktail parties—events where I’d get all gussied up in a sexy dress, paint my toenails, braid my armpits. The invitations I have are to more sterile affairs. Where the dress code is scrubs, lab coats, and hospital gowns, and the only alcohol being served is isopropyl. I’m talking about clinical research studies. And apparently, scientists consider me a hot commodity because I’ve got, or at least had, something of great value: breast cancer.

  Partly out of curiosity, and partly because I have time on my hands, I accepted all three invitations. So far, I’ve undergone testing for the first research study, where I am affectionately known as #109. The nurses kept me busy with computer questionnaires, face-to-face interviews, and biospecimen collection. While donating a bucket of blood, I discovered an alternative to fainting—I just whined like my dog. This really amused Nurse #1, who was drawing my blood.

  The other one, Nurse #2, did not find me so amusing. Nurse #2 measured my bone density and administered numerous other tests, including the “Tanita Body Composition Analyzer.” She had me stand, barefoot, on this electronic scale-like machine, with my hands gripping spongy detachable handles. When she instructed me to squeeze hard, it occurred to me that since she is a practical nurse, she might appreciate a practical joke. So while squeezing the handles, I pretended I was being electrocuted, rigidly shaking while making this awful sputtering buzzing noise. She jumped out of her chair. Then, realizing she’d been fooled, she smiled in my direction. But not a friendly smile. It was one of those wide menacing smiles, where teeth look sharp and dangerous and poised to bite.

  After a few more tests, my first volunteer session was over. I was surprised how quickly two hours had flown by. As a token of appreciation for participating in this breast cancer study, the nurses presented me with a ten-dollar gift card to a grocery store, which I graciously accepted.

  When I got home, I was greeted with an invitation to participate in yet another clinical research study. The covering letter stated: “Thank you in advance for helping us in our continuing effort to understand the causes of breast disease. A tea bag is enclosed in the study package. Please accept this gift as a token of our appreciation.” This made me laugh out loud.

  Swayed by the solitary tea bag, I signed up right away for this study and resolved to sign up for any more that come my way. Donating my time, biospecimens and high jinks to science is a token of my appreciation—that I’m still here, lucky to be playing a small part in the search for a cure.

  And now, my dear old camp friend’s reply:

  Dear Volunteer,

  Very good of you to offer up your body for science. I can remember a time when your body was in hot demand.

  It was looked at, squeezed until juices were flying, and, in the end, much by way of clinical research was learned.

  I am so proud that you are keeping up with science and lending your parts.

  They are lucky to have you.

  I am most proud of your antics, keep them on their toes. Good for you.

  xox Susie

  FIVE MONTHS HAVE PASSED since my surgical initiation into instant menopause, and surprisingly, nothing terrible has happened. Quite frankly, I was worried my vagina—who I have always considered to have a mind of her own—would be grief stricken over the loss of her ovarian and fallopian friends. So I’ve been watching over her, in case she did something drastic—like go out on a limb and start binge douching or sport fucking. Anything to fill the void. But so far, despite a few lonely tears and melancholic moments, she’s kept a stiff upper lip, stayed upbeat, and maintained her composure. Talk about resilience and inner strength!

  Unlike my valiant vagina, I’ve turned into a whining wimp. A whining wimp with a limp who sweats like a pig. Not all the time, thank goodness. Just during hot flashes—say, twenty, thirty, forty times a day. It’s all so unpredictable. No matter what I’m doing, where I am, or who I’m with, at any given moment I’ll be suddenly ambushed by a stupendous surge of heat deep within my core. This heat quickly radiates throughout my body, and soon I feel like an egg roll cooking in a deep fryer: boiling hot, greasy with sweat, begging fo
r mercy.

  Regrettably, I’m not witty when I whine. I make whimpering noises while mopping up beads of sweat with dinner napkins or facial tissues, even toilet paper, my hand swabbing discreetly under my shirt, aiming for armpits and phantom cleavage. I suppose I could dig out my stash of super-absorbent sanitary napkins and tampons. But after consulting my vagina, who endured thirty-five years of menstruating, we agreed to never use feminine hygiene products again—not even for unconventional purposes.

  We would make one tiny exception—if Hollywood came knocking and paid me big bucks to star in my own reality TV show. It would be called Hot Flash Hell. And it would chronicle my hilarious journey through instant menopause. There’d be close-ups of me sweating buckets while out shopping, fanning myself furiously with a menu at a restaurant, and even time-lapse photography of me sprouting sexy new chin hairs.

  As my fantasy unfolds, the director takes me aside, whispers in my ear, then shouts, “Lights—camera—action!”

  And right on cue, all flushed and soggy, I rattle off an original one-liner: “I’m melting, I’m melting!”

  Then I unwrap a sanitary napkin, unfurl its wings, and mop up my sweat. When I’m done, the director praises my performance and calls a short break. To cool down, I sip an icy mint mojito while lounging in my air-conditioned dressing room and prepare for my next scene—the one where I try to convince viewers that I am not crazy and that millions of other menopausal women are not crazy either. We’re just hot and bothered and fixated on finding some relief, even if it means letting our imagination run wild.

  WHEN GERMAN PHILOSOPHER Friedrich Nietzsche coined the phrase “What doesn’t kill you makes you stronger,” he obviously didn’t have Parkinson’s disease and breast cancer—at the same time. Because if he had, he would have written this instead: “What doesn’t kill you makes you stranger.” I should know; I’m getting stranger every day. One disease makes me move weirdly. The other disease makes me look lopsided. And they both make me feel self-consciously conspicuous, like walking around with a ready-to-pop pimple on your nose on prom night. And that’s on good days, when I’m well rested and I’ve remembered to take my Parkinson’s medication.