Appearances

by Sondra Helene

  IT’S BEEN TEN months since Elizabeth’s forty-fifth birthday. Just afterward, she set a new priority in her life: to spend quality time away from doctors and chemo. We entertained ourselves in New York, shopping for spring fashions and checking out trendy downtown restaurants. Auntie Gloria treated us to a show on Broadway. I never could have estimated how satisfied I’d be to see Elizabeth engrossed in Jersey Boys.

  Five months ago, our beloved Dr. Varghas left Beth Israel for a position at the Cleveland Clinic in Ohio. But he left us his cell number and specifically said we could call him anytime for a second opinion or advice.

  We met a colleague of Dr. Varghas’s at Beth Israel but didn’t feel comfortable working with him as our new oncologist. We decided to interview the highly recommended Dr. Foley, chief of thoracic oncology at Mass General Hospital, the largest teaching hospital of Harvard Medical School. Although Dr. Foley isn’t nearly as warm as Dr. Varghas, he’s professional and has a brilliant reputation.

  Elizabeth’s blood counts and scans were stable for seven months. The Iressa kept her feeling healthy and strong. Then her cancer markers started to rise and Dr. Foley switched Elizabeth to Iressa’s stronger cousin, Tarceva—exactly what Dr. Varghas said he would do if the cancer woke up.

  Initially, I wasn’t alarmed. But the markers continued to rise. Elizabeth broke out in a prickly rash resembling severe acne across her forehead, one of Tarceva’s known side effects. That was supposed to indicate that the drug was working, at least.

  Disappointed in her progress, Dr. Foley recommended that Elizabeth seek a clinical trial, one that would include another novel drug, Avastin. The drawback was that Avastin was already known for harsh side effects, like dry mouth, loss of appetite, mouth sores, hair loss, loss of taste, jaw pain, and gum infections. Worst of all, it would have to be administered in conjunction with chemotherapy. Chemo again.

  In addition to the acne, Elizabeth has lost her energy. She’s been lethargic, complaining of throbbing occipital headaches so terrible she can’t lift her head from the pillow. Yesterday she went for an MRI of her brain. We called Dr. Varghas in Cleveland to discuss the pros and cons of the clinical trial. He was optimistic, though he did dwell on the side effects because he was concerned, as always, about how they would impact Elizabeth’s quality of life, the time she has left with her children.

  To have Varghas’s endorsement is motivating because it means there are options. That’s what the doctors have been promising all along: when one treatment stops working, they’ll pull another drug from their arsenal, even from among those still in development. Of course, we can imagine that there is a limited supply of drugs, and of course Dr. Varghas did warn us that, at some point, all drugs could fail. There’s another catch: in order for Elizabeth to begin a trial, she has to be off all medications for three weeks. That’s when her worst headaches begin.

  In a bleak mood, I force myself to celebrate my friend Debbie’s fiftieth birthday, joining our friends at the Taj Boston hotel. White-gloved waiters dispense champagne and lobster salad on tiny crackers, and the sleek flatware reflects elegant flower arrangements. Visible through the windows are the Public Garden and the magnolia trees in bloom. Swan boats ferry vacationers around the hourglass pond.

  Midway through this lovely party, I am distracted by an urge to check my phone, wondering whether I have received the results of Elizabeth’s MRI. Discreetly, I open my bag and notice I have eight missed calls and two messages.

  I excuse myself as the waiters are clearing entrées and exit to the hall. All eight missed calls are from Jake. “Where the hell are you?” he says on my voice mail, as if he’s hyperventilating. “The MRI is bad. It’s so bad. Don’t call my house. I’m at the office. I haven’t told Elizabeth. Call me ASAP.”

  With a hand on my heart, I dial.

  “It’s in her brain,” Jake blurts when he picks up. “But not one spot—all over. It’s all over. . . .” He stumbles on. “I’m leaving my office. Foley wants to give the results in person. I can’t tell her myself. Can you be there? Meet us at the hospital in half an hour?”

  “I’ll be there.” The fact that I can answer surprises me, so deep is my shock.

  I end the call, and my phone becomes a brick in my hand. A woman passes me in the hall, ushering her child to the bathroom. Two friends from the luncheon gracefully walk to the ladies’ room in their high heels. How odd to be surrounded by such beauty and elegance in this moment, as my world has just changed again.

  I place the phone to my ear, but I don’t know whom to call. I’m not at this party anymore. I can hear my own breathing, as if enclosed in a tunnel. Servers pass, wheeling a birthday cake and dishes, and I remember Debbie. I don’t want to interrupt her party or add any type of distress. I decide to let her know that I must leave, but not why.

  “I’m sorry,” I whisper when I find her. “I have to pick Alexandra up at school.”

  “Everything okay?” Debbie asks, surprised that I’m leaving early.

  “Yes. Please don’t get up,” I say, as I lean over to kiss her cheek. “Happy birthday.”

  I remain composed as I make my way quickly out of the room, following all the social rules even in an emergency. But when I reach the corridor, I run as fast as I can in my kitten heels. I give my ticket to the valet and pace back and forth in the hotel lobby, punching the black marble floor with my feet. The car comes quickly, thank God. Within minutes I am on Storrow Drive and exit for Mass General.

  I arrive right behind Elizabeth and Jake. I leap out of my car at the valet stand to join my sister’s side. I already know more than she does, and I can’t look her in the eye. She’s pale and frightened, similar to the way she looked the night she received the original fax with the Stage IV diagnosis. How I would trade that night for this moment now.

  “My hand was shaking,” Elizabeth says. “My eye twitched. My speech.”

  “When did all that happen?” I ask. My mouth is sandpaper

  dry.

  “Just on the way here,” Jake says.

  Now I decide that I will look into my sister’s eyes. Her pupils are dilated.

  This is it, I think. The death sentence. We enter the lobby through heavy glass doors. Jake and I each hold one of Elizabeth’s hands, afraid to let go, to let her float away. A young, slim woman at the main desk directs us to the eighth floor. The elevator door opens onto a sign that says NEURO-ONCOLOGY.

  I scan the waiting room and see a thirtysomething-yearold woman with a partially shaved head, a somber teenager in a wheelchair, flanked by parents. It feels strange to be dressed in party attire and surrounded by white coats. My attention lingers on a gentleman around my age, with a shaved, stapled head. He can’t be more than forty-five, fifty. His wife holds his hand. Everyone here is at the end. No one speaks.

  Before we have a chance to sit, Elizabeth’s name is called.

  We’re ushered into an office with a large picture window overlooking the Charles, today dotted with sailboats. We can see Storrow Drive, which carries a steady line of cars moving from one place to another. It’s an attractive view for a place dealing in sickness and death.

  Dr. Foley enters the room. “What are your symptoms?” he asks.

  “I think I had a seizure in the car,” Elizabeth squeaks.

  Dr. Foley stares at us before responding, and it hits me: the chief of oncology at MGH doesn’t want to tell us what he knows.

  “Elizabeth, the disease has taken off,” Dr. Foley says. “There’s really no other way to put it. The MRI shows that cancer has spread to the meninges, the fluid surrounding your brain and spinal cord. This is very serious.”

  “I had a feeling it had spread,” Elizabeth says, as if she had solved a mystery, strangely calm. I take her hand. Jake shakes his head.

  “Can this be treated?” Elizabeth asks.

  “Yes—but I have to tell you, it’s not a great spot to be in.”

  I process Dr. Foley’s words. This is the frankest any doctor has ever
been with us. Maybe because the disease has progressed, he has no choice. Dr. Foley’s face is pinched. It seems like he has lost hope for my sister. I want to vomit into the trash can. I cross one leg over the other and rub my forehead with my fingertips.

  The door opens, and a short, round-faced, thirty-ish man walks in and stands beside wiry, thin-nosed Dr. Foley. “I’d like to introduce you to Dr. Hamilton,” Dr. Foley says. “He’s a neurooncologist. A good match for you, Elizabeth. Brain matters are not my expertise.”

  “Nice to meet you,” Dr. Hamilton says, shaking our hands.

  “First I’m going to explain what has happened, and then I’ll answer any questions.”

  He turns on a computer and brings up the scan of Elizabeth’s brain.

  “It’s as if the cancer is a thin layer of peanut butter spread over the brain. It’s called leptomeningeal disease,” he says.

  I am listening, but it’s hard for me to focus, knowing this is my sister’s brain he’s talking about. Peanut butter?

  “Our best option is whole-brain radiation and chemotherapy to the spinal fluid,” Dr. Hamilton says, and pauses for this to register. “I recommend radiation for three weeks, five days a week.” When that’s finished, he recommends surgically implanting an Ommaya reservoir in Elizabeth’s head as a port for chemotherapy.

  “I will still fight,” Elizabeth says, but she sounds exhausted.

  We didn’t see this coming, and I can’t help but wish that anyone—Dr. Varghas?—had prepared us for the possibility that Elizabeth’s cancer would metastasize to her brain.

  “Is this treatment the usual course?” I ask.

  “Not usual, but promising,” Dr. Hamilton says. “There are significant side effects from whole-head radiation, but it’s the best option you have. We’ll use a scalp block so that the hair loss will not be permanent.”

  In the midst of all this bad news, Dr. Hamilton’s mention of my sister’s hair makes my heart lift. Does this mean he thinks she’ll be alive long enough for her hair to grow back?

  Before now, Elizabeth has not been outwardly sick. Aside from some tiredness and a bit of nausea, the cancer appeared less physically taxing than it actually was. Now we’re in an entirely differently league, the horrible cancer-patient stuff we’ve been afraid of and in denial about. This is going to require more than a wig and wheatgrass.

  I feel flush; heat creeps up my neck. Deep down, I was hoping for divine intervention, that Elizabeth would have a miracle recovery featured in medical journals.

  Leaving the office, I catch a glimpse of myself in the mirror and notice a profound weariness in my face. I wish I had Richard to hold me as I wallow in my grief.

  Soon after the appointment, I sit him down and tell him everything. He sees and hears the anguish, the shakiness, in my voice. I understand that I am breaking my promise to Jake, but I need Richard to know. It’s also time to tell Brooke and Lauren the true extent of their mother’s disease.

  WITHIN A WEEK, Elizabeth begins her new round of treatments. They’re much worse than the routine radiation she got before. This time it’s not just her body that’s taking a beating; it’s her brain.

  I spend even more time with her than I did in the beginning, because she is slowly losing her independence. Her gait has become unsteady. I’ve been driving her to the grocery store and even helping her walk around the house. Her children are perceptive. Jake hasn’t wanted to give the kids too much information, but Elizabeth’s condition speaks for itself. In the hallway off her bedroom, Brooke whispers, “Auntie, why can’t Mom drive? Did the cancer spread more? Will she have to have chemo again?” Dr. Foley has recommended that Brooke and Lauren start seeing a therapist at the hospital to help them understand their feelings. Jake makes separate appointments with a Dr. Singleton, the hospital’s family psychiatrist.

  I hesitate in the moment, but seeing Brooke’s concern for her mother makes the words tumble out of my mouth. “Yes, sweetie. The cancer spread to your mom’s brain. Yes, she’ll need more chemotherapy.”

  “I knew it,” Brooke says, her voice laced with anger. “This sucks. That’s why we have that appointment.”

  “I understand you’re upset. I am, too. It’s not fair. Come with me into your mom’s room. Let’s watch TV with her,” I say.

  Reluctantly, Brooke follows.

  Elizabeth and I lie on her bed, watching Oprah, with Brooke snuggled between us. We watch for the full hour with our arms and legs entwined. Even though we aren’t talking deeply or openly about our feelings, this is the easy intimacy we share, even in the hardest times.

  When the show ends, Elizabeth is half-asleep. Brooke props herself on her elbow and asks, “Auntie, can you take me to the tailor so I can get my pants shortened?” She has just bought new clothes for spring.

  I smile at her, nodding. “Of course.”

  “Come in my room so I can show you,” she says perkily, her voice now devoid of anger. I can see she craves the routine things her mother did for her, the everyday errands.

  “Okay, sweetie pie.” I turn to Elizabeth and gently squeeze her arm. “We’ll be right back, okay?” She nods.

  My hand on her shoulder, Brooke leads me across the hall to her bedroom.

  “Look,” she says, pulling out new jeans and sweaters and a pair of corduroy pants. “I have five pairs I need to get hemmed. Can we go now? Please?” She is like her father, Jake, always wanting things done.

  My back is to the door, but I feel a presence. I turn to see Elizabeth holding onto the wall. She manages a few steps to plop herself down onto Brooke’s bed.

  “Hi, girls,” she says, with a childish grin on her face, proud of herself for having snuck over here. But I can tell she’s exhausted just from the trip across the hall.

  “Hey! We thought you were sleeping,” I say. “You didn’t have to wake up for this.” It takes me only a few seconds to realize that she did this to hold on to her place as Brooke’s mother, captain of her ship. I feel selfish that I didn’t think to bring Elizabeth into Brooke’s room with us. How awful she must have felt, left behind while I walked out of the room with my arm around her daughter. I can imagine how much she wants to be the one to drive Brooke to the tailor. I imagine that she looks at me with health envy. I think I would if our roles were reversed.

  Life goes on, though. Clothes have to be washed, meals have to be made, spring pants have to be hemmed. Elizabeth would do anything to be able to perform these tasks, all of which used to be simple and mundane. If it were Elizabeth taking Alexandra on errands while I had to stay home sick in bed, it would be tough to bear.

  “Okay, we’re all going to the tailor,” I say. “Let’s get our coats.”

  Brooke runs downstairs, and Elizabeth holds the banister. We go to the car.

  When we get to Mario the tailor, Brooke changes in the dressing room and Elizabeth positions herself across from the mirror. I stand near her, watching with admiration as she takes control. When the tailor pins up each pair of pants, Brooke says, “Mom, is this the right length?”

  “A little longer,” Elizabeth says. When the tailor lengthens the pants a bit, she says, “A little shorter.” He brings them up slightly. “Perfect,” she says. She hasn’t lost her eye.

  I think about all the things, small and large, that Brooke and Lauren will miss by losing their mother. Brooke’s only sixteen, and Lauren just turned thirteen. I never thought my family would have to endure such devastation. But why not us? Who are we to escape suffering?

  I grasp for the lesson in this challenge but feel only desperate for my nieces’ future happiness. I have considered them less throughout this entire ordeal, perhaps because to watch Brooke and Lauren struggle will be more unbearable than my own grief.

  Chapter Twenty

  Another summer, and Alexandra is away at camp in Maine. Richard is on Nantucket. I wouldn’t want to be anywhere but with my sister.

  Most mornings now when I pick up Elizabeth for radiation, I rush from the car into her
house, fearing the worst. Then I’ll collide with my sister behind the door: she’s ready, wearing shorts and holding a Prada satchel. On the drive, we talk about her kids. Elizabeth says Lauren prays to God every night before she goes to bed. Brooke spends evenings lurking in her own room. When Elizabeth enters, half the time her older daughter is withdrawn and sad, and the other half she’s worried.

  “She just asked me about colleges,” Elizabeth says, as we circle and climb levels of the MGH parking garage. “Jill said she’d help her with applications if I’m not up to it.”

  “Brooke likes talking to Jill,” I say.

  “I’ll help as much as I can,” Elizabeth says, as if wondering how much that will be.

  The technicians accept us on time, and the treatment takes fifteen minutes. The session itself is uneventful, just as the earlier therapy was.

  Back at the Gordons’, Elizabeth can barely climb the stairs. I support her from behind. When she leans back, I’m afraid we might both topple backward. Elizabeth has always wanted to rip up the rug and restore her home’s hardwood staircase, but now I thank God for carpeted stairs.

  “I’m exhausted,” she says when we reach her bedroom. She crawls into bed.

  I tuck her in and give her a kiss, but just as I’m turning to leave, Elizabeth shouts, “Hurry—help me to the bathroom!” I rip back the covers, and Elizabeth barely makes it to the toilet. I hold on to her wig as she vomits again and again. So much for the anti-nausea drugs.

  In July, Elizabeth has surgery to insert the Ommaya port into her brain. Her skull will be cut, the port placed just under her scalp, to access her spinal fluid. The surgeons call it a “simple” and “routine” procedure. It may be simple for the doctor, but not for the person whose head is incised. We have outgrown our cheerful selves, our upbeat thinking. Elizabeth no longer calls me for reassurances after I’m home. No more long hours of telling her she’ll beat this. Even Jake’s updates to the kids are blunt. It’s in her brain. There is no cure. Treatment may buy her a few months.