Most of Me

by Robyn Michele Levy

  “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 f
ollowed 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?

  I obviously need help. So I pick up the phone and call an expert.

  “Hello, Zoë? It’s Robyn,” I say, my voice tinged with shyness and urgency.

  “Hi, Robyn. What a surprise. How are you?” she asks.

  It’s been years since we last connected, our busy lives having pulled us in different directions. But now I’m heading into her terrain.

  “Actually, I’m not doing great. Do you have time to talk?”

  She assures me she does, so I bring her up to speed and she is shocked and genuinely sorry.

  I’ve known Zoë for fourteen years. When our kids were little, she invited Bergen, Naomi, and me into her community of young families that gathered for potluck dinners and moral support. She was one of those rare mothers, blessed with not only natural parenting instincts but also the guts to follow them. She was also blessed with a voracious appetite and talent for acquiring and sharing knowledge about raising kids. And then a few years into our friendship, Zoë was diagnosed with metastatic breast cancer and used her phenomenal research skills to determine her strategy to quash the cancer. She chose to have a mastectomy and radiation, as well as alternative healing treatments, and thankfully her cancer went into remission.

  When I tell her about my chemo conundrum, she is sympathetic. And when I ask her to disclose her secret research tips, she says, “Would you allow me to do this research for you? It sounds like you could use some help.”

  “Really?” I ask, tears streaming down my face.

  “Really,” Zoë says with conviction.

  I take a deep breath and feel my panic beginning to subside, like a slowly deflating balloon. “That would be incredibly helpful,” I say. And then I realize that we haven’t talked about her yet.

  “How are you doing?” I ask. “How are your kids?”

  She tells me about her teenage son and preteen daughter. Then she is silent for a moment and reluctantly says, “My cancer is back. And I’m back in treatment.”

  This news cuts me to the core. “I don’t think it’s a good idea for you to do my research,” I say. “You need to look after yourself.”

  “But I’m so tired of being so focused on me all the time. This is exactly what I need right now—something to distract me and help me feel useful. I really want to do this for you and for me.”

  There is no point arguing; Zoë has made up her mind. And so I graciously accept her offer.

  “I’ll e-mail you my report in a few days.”

  “Thank you, Zoë. Let’s go for a walk with our dogs sometime soon,” I say.

  “I’d like that,” Zoë says. So would our dogs.

  A few days later, Zoë’s e-mail arrives:

  Hi Robyn,

  I sure wish we had reconnected under wildly different circumstances, but I’m really glad that you called me. I went online after we spoke and quickly found out that that wasn’t going to be a useful route. I then e-mailed some of my contacts, including my naturopath.

  One contact, who just started work at the College of Physicians and Surgeons, tried to find out how chemo might affect Parkinson’s symptoms. Unfortunately, she couldn’t find any research on this subject. But she suggested you could go to the library at the BC Cancer Agency and ask them to do a search for you.

  My naturopath said hard data will be hard to find. He suggests asking your oncologist about complementary therapies that might be neuroprotective and consider glutathione IV, an excellent antioxidant.

  I’m sorry to not have anything solid to offer you at this point. I’m thinking of you and am sending you kick-ass clarity to help make the incredibly hard decisions you are being asked to make.

  Your friend,

  Zoë

  Hi Zoë.

  Thank you thank you thank you.

  I too wish we had reconnected under wildly different circumstances, and I am so sorry about your health situation.

  I really appreciate your time and energy spent researching on my behalf.

  Let’s walk our dogs one day soon,

  Love, Robyn

  ALL LEADS have proven fruitless—it seems no research exists about chemotherapy’s detrimental effect on Parkinson’s disease. So without damning proof, I am still on the hook for making a decision. With less than two weeks to go before my first round of chemo, I am desperate for some kick-ass clarity.

  Then Bergen and I attend Chemo 101 at the cancer agency—a private crash course taught by a nurse. At least, that’s who she says she is. But she doesn’t fool me with her little nurse disguise. Right away, I smell a rat. And as she walks us through the nasty nuances of this toxic concoction, I catch a glimpse of her true identity—Grim Reaper Sales Representative. I hope she isn’t working on commission, because she does a lousy job selling me on any of the sinister side effects she rattles off. And much to her dismay, I don’t fall for her promise of silky smooth legs, a clear-cut crotch, and bald pits. This road to no hair
terrifies me.

  At the end of the class, I am convinced that chemo is not for me. But I hold off making my final decision—I am still waiting to hear back from Dr. Lohrisch and to hear what the other oncologists at the case conference recommend.

  I HAVEN’T SEEN Theresa in months, though I did leave her a phone message after my mastectomy to let her know that I’d survived. I haven’t been avoiding therapy; I just haven’t felt the need. Until now. When she sees me, Theresa says, “Thank you for calling after your surgery. I was so relieved to hear your voice and to know that you were OK.”

  “You’re welcome.” I’m sitting cross-legged in the chair, watching her watching me.

  I say, “I don’t know why, but you look different. I must look different too.”

  “A little,” she says with a smile.

  “It’s gone.” I point at my vacant lot. “The dingo ate my baby.”

  “I know. I’m sorry.” I watch her smile drift away as she takes a long, deep breath.

  “How are you?” she asks.

  “Sad. And still in shock,” I answer, as my Cry Lady reaches for a tissue.

  We wind our way through my grief at the loss of my right breast, the fear that I might pass breast cancer to Naomi as well as Parkinson’s, my chemo conundrum, my continuing Parkinson’s degeneration. I point out the scenic highlights along the way: harmony at home, my father’s visit, my friendship pilgrimage. By the end of our session, I am still sitting on that chemotherapy fence. But now I accept that there is no right choice—there is just a decision that works best for me.

  “Is there anything else you want to say or need from me before you leave?” Theresa asks.

  “I don’t think so.”

  “Then I have something to tell you—I’m pregnant. I’m due in five months.”

  “That’s why you look different,” I laugh. “I thought you had gained a little weight. How are you feeling?”

  “Much better these days. I was quite sick in the first trimester.”