Most of Me (18 page)

At the end of the visit, we thank Cicely for this oncological dress rehearsal and tell her what a difference it makes to our comfort level. With a clearer idea of what to expect during my upcoming meeting with the oncologist, my overwhelming panic has downgraded to manageable anxiety. We hug good-bye, and she wishes me well, handing me the notes she's made from reading my file. And as we drive away, I watch her standing on the front porch, one hand waving, the other hand holding a jar of Bergen's homemade kiwi jam.

THE NIGHT BEFORE
my appointment with the oncologist, I am wound up with worry and in desperate need of distraction. Bergen suggests we escape to the movies for some comic relief. “How about Woody Allen's new film,
Vicky Christina Barcelona
?”

“That means I'd have to get out of these pajamas and put on some real clothes,” I whine.

“That's right. I'll help you,”

Soon I'm wearing what will become my post-mastectomy uniform—jeans and a loose-fitting blouse with a scarf strategically draped around my collar to conceal my vacant lot.

This is our first evening out since my surgery—just the two of us. Once we've bought our tickets, the mouthwatering aroma of popcorn lures us into the lobby, where I immediately have second thoughts. What am I doing here? This is crazy! People and popcorn stream by. I snuggle up close to Bergen, not because I'm feeling romantic, but because I'm feeling neurotic and self-conscious. What if someone accidentally elbows me in the chest? What if I bump into someone I know and my Cry Lady makes a scene? I don't tell Bergen what I'm thinking, but he knows that I'm nervous.

“Don't worry,” he says. “Everything's going to be
OK
.” I take a deep breath, and while exhaling I spot Michelle and Honey. They're old friends of Bergen's, and judging by the expressions on their faces, they are surprised to see me alive. There's a round of hugs and hellos, and then Bergen says, “I'll be right back,” and heads to the washroom, leaving us ladies alone to chat.

Michelle stuffs her hands in her pockets, gives me a nervous smile, then bravely asks, “How are you? I heard about your diagnosis.”

“I'm doing
OK
,” I say, aware of a slight tingling sensation in my eyes.

“When was your surgery?” Honey wants to know.

“About a month and a half ago. The beginning of August,” I say, determined not to cry.

“Wow! You look great,” Michelle says.

“Thanks,” I reply, strategizing how best to keep those unwanted tears at bay. Poke my eyes out? Pass. Let out a primal scream? Not in the mood. Play a practical joke? It's worth a try.

I spot Bergen in the distance. “Here he comes,” I say.

We all turn our heads toward the rear of the lobby and watch him weave through the crowd toward us.

“Do me a favor,” I whisper, keeping a straight face. “Please don't mention my mastectomy to Bergen. I haven't told him yet.”

Michelle and Honey freeze in place, their eyes bulging out at me, then at each other, then back at me. I can almost hear their voices inside their heads: “Why hasn't she told him? What kind of husband doesn't notice a missing breast?” These precious fleeting seconds of deception fill me with joy—it's comforting to know that my hoodwinking habit still works as well as it did when I had two tits. When Bergen rejoins our group, there's an awkward silence. And then I start to laugh.

“What's so funny?” he wants to know.

“Robyn is,” Michelle answers, laughing along with Honey, “but you probably already know that.”

ENTERING THE SLIDING GLASS
doors of the
BC
Cancer Agency is like being swallowed by a benevolent monster: terrifying and comforting at the same time. Its cavernous belly is filled with cheerful volunteers welcoming everyone, while hand-sanitizing stations wage war with everyone's germs. I smile at the smiling receptionist sitting behind the smile-shaped information desk and ask her, “What floor is Dr. Lohrisch on?”

“Second floor,” she says, pointing to a crowd of patients and their entourages, waiting for an elevator.

Bergen and I join the group, and I try to pick out the people plagued with cancer. Some are easier to spot than others. Wheelchairs, bald heads, intravenous units—these are all dead giveaways. So far, I count four cancer patients. But I'm sure there are more. They just blend in with the healthy ones.

The elevator arrives, and a volunteer holds the doors open while everyone crams inside. When the doors close, we all retreat into our solitudes, avoiding eye contact, preserving our privacy—or what's left of it since cancer invaded our lives and led us to this public place. Most of us get off at the second floor, register at the front desk, then take a seat in what resembles a small airport waiting room. For every name that is called, I imagine a different plane taking off in a different direction, and I feel the shared emotional turbulence of suffering, fear, and hope.

An elderly woman pushing a stainless steel refreshment trolley is slowly making her way toward us. The coffee and tea are complimentary. The snacks are by donation. When she pulls up beside us, Bergen puts down his
Scientific American
and gets a coffee. I don't want anything; I packed my own snacks from home. My appointment is at 8:15
AM
, and already it's after 8:30. I dip into my supply of raisins and flip through a magazine. Soon, a nurse holding a clipboard calls out my name. I give her a wave, and Bergen and I pack up our stuff and follow her to an examination room, where I change into the flimsy hospital gown folded on the table. It's a good thing I didn't shave my legs or my pits for this appointment—it's so chilly in here; if it weren't for my hairy insulation, I'd freeze my tit off.

We wait some more until another nurse arrives. This one measures my height and weight, takes my blood pressure, checks my heart rate, and asks basic questions about my current state of health. Apparently, I am now ready for the oncologist.

A tall, dark-haired, two-breasted, arm-swinging woman in a fancy dress suit and leather pumps introduces herself: “Hi, I'm Dr. Lohrisch.”

“I'm Gug the Cavewoman,” I imagine saying, “and this is my husband, Bergen.”

There is a round of civilized handshakes, and then Dr. Lohrisch examines my vacant lot and remaining breast. When she's done, she says, “You can get dressed in your clothes now. I'll be back in a few minutes.”

The remaining time is spent reviewing my case history—which Dr. Lohrisch has memorized—and discussing treatments that increase the probability of a cure and may prevent breast cancer from recurring.

“Here's what I recommend,” she says, placing a clipboard on her lap and jotting down notes as she talks. “First, chemotherapy. Then hormone therapy, including Tamoxifen and ovarian suppression. The chemo may actually induce menopause. But if it doesn't, then there are three other ways to do this: radiation of the ovaries, monthly injections of a special hormone-suppressing drug, or surgical removal of the ovaries.”

Despite the topic of discussion, I feel remarkably calm and focused, thanks to the preparatory consultation with Cicely. There are no surprises—this protocol is almost identical to what Cicely predicted. Except for one thing.

“Why don't you recommend radiation for my chest?” I ask.

“Because when your breast was removed, the margins, those areas surrounding the tumors, were all clear of any traces of cancer. And so were your lymph nodes. In my opinion, radiation is not needed.”

Bergen and I sift through the information, asking questions, expressing concerns, particularly about the negative impact chemo may have on my ailing body and my quality of life. Before being diagnosed with cancer, I was going to start Parkinson's medication this fall, but I decided to wait until these treatments were over. I tell Dr. Lohrisch that I have no reservations about taking Tamoxifen and suppressing my ovaries, but I have mixed feelings about chemotherapy.

“What would you do, if you were in my shoes?” I ask her.

“I'd start chemo. You might not have such bad side effects. And you can stop taking it anytime.”

“When would I have to start?” I ask, hesitantly.

“In a few weeks.”

“I understand we can ask for a case conference, to get some more opinions from a team of oncologists,” Bergen says.

“I think that's a great idea. I'll set that up,” Dr. Lohrisch smiles. “In the meantime, why don't I set things up for you to start chemo in three weeks? Book you in for some tests, arrange for you to get a port implant in your vein, and I can write a prescription for antinausea medication.”

On our way out, just thinking about chemo makes me nauseous.

Back in the lobby, we squeeze through a fresh supply of cancer patients and their entourages, waiting their turn to be swallowed.

MY STREET
has been designated a bicycle commuter route, and construction is underway. Nellie and I watch the city workers installing traffic-calming circles in the middle of intersections. They measure and map, dig up asphalt, pour concrete, and in the end plant simple round gardens, smack dab in the center of each one. A few green-thumb neighbors have adopted a circle to call their own. We think these are the most alluring gardens.

I'm considering adopting a circle, the one closest to my house, where I'd plant towering sunflowers that dance with the wind, where my remains could be buried on a moonlit night, and where Nellie could pee on my plaque:

Here lies most of Robyn Michele Levy
Beloved wife, mother, daughter, sister, friend

May she rest in piss

Amen

I'VE JOINED
a women's cancer support group. We meet Monday afternoons at two o'clock. Eight of us attend regularly. Most of us have breast cancer, including the group leader, Chantal. She is in her early forties but could pass for twenty-five. She was first diagnosed years ago, underwent surgery and treatment, and after years of remission has been dealing with metastatic cancer. Looking at her, you'd never know it. She is beautiful and vibrant, full of life. She leads with a gentle touch. So gentle that our first session makes me question her approach.

It starts off well, as we take turns introducing ourselves and our afflictions, while respecting the don't-interrupt rule. But soon our sacred circle begins to collapse, as Cantankerous Woman keeps shooting off her mouth at inappropriate times. And just when Chantal's softhearted reminders not to interrupt have the desired effect, Cantankerous Woman's whining is replaced by the stammering voice of Little Old Lady, who, up until a moment ago, has been fast asleep in her chair. In a medicated mist, she rambles her way through what seems to be a barely comprehensible book report, which has no relationship whatsoever to the topic of discussion or Cantankerous Woman's gripes. There is no stopping her until she eventually nods off to sleep again. I have to stop myself from laughing. Chantal regains control for a while until Cantankerous Woman gets all worked up again and wakes up Little Old Lady, who picks up where she left off until she finally conks out for the rest of the afternoon.

Despite the screwball comedy of that first day, I feel an undercurrent of connectivity between some of the women. Particularly Sue and Cheryl—who, like me, are undergoing treatment for recently diagnosed breast cancer. Sue is athletic, adventurous, and indomitable. As far as she is concerned, her cancer—which has spread to her ribs—doesn't stand a chance. She sailed through chemo and is preparing for radiation, the removal of her ovaries, and a double mastectomy to be followed by reconstructive surgery. Cheryl is a hard-working, hard-playing social worker who is undergoing radiation treatment and will soon have a single mastectomy and reconstruction. The three of us exchange e-mails, and sometimes we go out for a bite. Through them, and the support group, I am discovering that not only is there strength in numbers, but there is also hope.

In the meantime, however, I'm having a mid-disease crisis, and my panic has returned with a vengeance. The very word “chemotherapy” sends shivers down my spine. Who knows what it will do to my body? Who knows what it will do to my brain? This fear of the unknown is unnerving; I've only been terrified like this once before. It was when I was eight months' pregnant and about to face giving birth. I did a lot of research and started interviewing all the mothers I knew and even some I didn't. I was scared and unprepared, so I gave them each a minute to tell me how it really felt—I simply had to hear all the gory details so I could face my fear. Most mothers were obliging. Some grimaced. Some gloated.

I kept a written record and quote from those notes:

“It felt like a tornado was twisting in my gut.”

“It felt like my baby squeezed right out of my butt.”

“It felt like Tiger Balm had been rubbed you-know-where.”

“It felt like a bomb went off in my underwear.”

“It felt like my vagina was committing suicide.”

“It felt like my period, except I almost died.”

“Don't worry; you'll do fine. Have you written out your will?”

“Why don't you learn to meditate, 'cause it's going to fucking kill!”

Thanks to my investigative research, and a prenatal class Bergen and I attended, when I went into labor I was no longer afraid of the unknown. Instead, I was terrified of what I knew about: pain and suffering and possible death. But at least I could make informed decisions. And since I was afraid I would be the one woman in a million to wind up permanently paralyzed by an epidural, I chose not to have this pain-blocking procedure.

Although fear of the unknown is at the heart of both my past and present crises, there are significant differences between the two. For one thing, there is the issue of choice. Once I was pregnant, giving birth was unavoidable, whereas chemotherapy is avoidable. For another, there is the research factor. When I was pregnant, my body was strong and healthy, and my mind was focused and alert; I was a research whiz. But that was then—before Parkinson's scattered my thinking and skewed my moods and tampered with my body. Now my capacity to conduct extensive research is compromised. Everything takes more time and more effort—surfing the web, finding sources, collecting studies, compiling notes, comparing facts, processing information. And with less than three weeks to go before my first dose of chemo, I'm feeling overwhelmed and underqualified to thoroughly investigate all the risks associated with chemotherapy and Parkinson's disease. Could chemo exacerbate my current symptoms? Could it trigger the onset of other symptoms? Could it accelerate the progression of Parkinson's? Could it interfere with the effectiveness of Parkinson's medication?