After Ommaya surgery, Jake works from the hospital room. As Elizabeth has declined, he has become self-absorbed. He smells fresh—a new cologne—and is already tanned from his morning runs along the marathon route in Newton.
“Can you spend the night?” Jake asks. “I have a business dinner.” He barely looks up from his BlackBerry.
I say that I can, reminding myself to ask the nurses for the overnight cot. “Mom and Dad will be here soon, too,” I add.
“I can’t stand seeing your mother so emotional,” Jake says. “Don’t let her cry in front of the kids.”
“It is what it is,” I say.
“Fine, but I’m leaving at five thirty.” Jake ducks crucial moments like these as if he thinks Elizabeth won’t know, or can’t comprehend, the difference. Or perhaps he can’t warch her like this. There she lies, with her head shaved and stapled, hooked to IVs. If it were Richard, I’d be livid if he left this room just because he didn’t want to deal with my parents.
When Jake has cleared out, I rub Elizabeth’s feet, as if I could massage away the terrible nightmare we’re living. I begin one of our meditations. I’m not sure Elizabeth understands what I’m saying. She stares at me, eyes wide open.
“You okay?” I ask.
No response. She looks away and gazes out the window at the boats on the Charles River, as if in another place, and I can’t blame her.
When my parents arrive, they bend and kiss their daughter’s bloated face. Elizabeth opens her eyes and tries to lift herself off the bed. She motions to the bathroom, even though she has a catheter. She must need to vomit, but there’s no receptacle. I silently curse the nurses, holding Elizabeth’s hand and rolling the IV behind her as she shuffles to the toilet. She throws up. I rub her back. She coughs and vomits again. My mother cries.
After Elizabeth is settled back in bed, Dr. Foley arrives. “Good afternoon,” he says from the foot of the bed. “You did great.”
Elizabeth regards him with skeptical, unknowing eyes.
Dr. Foley motions for my parents and me to join him in the hallway. “I’m sorry to tell you this, but I think you should consider hospice. I can refer you myself.”
I try to hold up under the blow. Hospice is for the dying. My mother drops her face into her hands, and my father supports her.
“We must face the truth,” Dad says to my mother and me. “Give me the number,” he says to Dr. Foley.
The next morning when I awake, Elizabeth is propped up in her hospital bed, eating a poached egg.
“Hi,” she says, much brighter than I expected. “Where’s Jake?”
“He’s working out,” I say, checking my watch, the hour of his morning run. “I’m sure he’ll be here soon,” I add. Her husband should be seeing her like this, I think, connecting with her while he can, whenever he can. But maybe he just can’t bear the sadness. “How are you feeling?” I ask.
“Eh,” she says.
What a difference from one day to the next! I think it’s a breakthrough, but the nurses say they see this all the time. Yesterday Elizabeth was on morphine, which eased her pain but slowed her full awakening after surgery—hence the dull, unresponsive eyes.
At discharge, Dr. Hamilton prescribes steroids. After three nights in the hospital, Elizabeth convalesces at home, where my father and Jake have arranged for hospice care. Over the next few weeks, everything, even Elizabeth’s personality, changes. She becomes almost childlike at times, developing a tic of touching the stapled scar on her head and reacting with surprise. She stares into the mirror, poking her water-weighted cheeks and making faces at someone other than herself. Due to cognitive changes, Elizabeth is restricted to the house, except for chemo and radiation, and can no longer be left alone.
A different way of posturing her mouth when she concentrates on chewing. A new nasalness in her voice. Leptomeningeal disease causes neurologic decline, I’ve read. Elizabeth no longer seems to comprehend the seriousness of her situation and rarely cries or expresses concern about Brooke and Lauren.
As strange as I find this new absence of alarm, at least Elizabeth seems to have lost her sense of dread. That old say ing, “ignorance is bliss.” While I don’t think Elizabeth is fully ignorant of her condition, or blissful, she might be on her way to a more accepting state. As my sister’s physical suffering intensifies, I’m simply relieved to see her worry less.
AFTER A MONTH of this—Elizabeth staying upstairs, watching long stretches of television, and eating nothing but soft foods and soup—my sister announces that she wants to have lunch with friends.
I consider the complications of this request. It will be difficult getting her downstairs, and I don’t know if I want her friends to see her like this. But she insists. I call Jane.
We schedule lunch for the following week. I tip Jane off to Elizabeth’s condition and her decline, worrying that it might all be too much for her.
The day of our lunch date, Elizabeth takes the steps on her own, one hand gripping the banister. She’s wearing shoes with a small heel, and her smile is wide but wary. An aide has helped her dress, but her wig is crooked. She’s gained twenty pounds, and her clothes don’t flatter. Her pants bunch and pull, her shirt buttons strain, and a favorite salmon-colored sweater hugs her bosom like a sausage casing. My sister, the fashionista who used to line her eyes with perfect, liquid strokes, is now an entirely different woman.
I’m afraid of what will happen once we’re out. People who know us might stare and whisper at the sight of her or, worse, pity her. Elizabeth is private, and I don’t want her to feel any shame. But, given all of her cognitive changes, I realize that only my shame is the obstacle here standing between us and a new normal.
“I’m ready,” Elizabeth says to me at the bottom of the stairs, with uncertain pride.
“You look wonderful,” I say. “Just a little fix on your wig.”
Elizabeth leans on the wall while I tug her wig into place. Looking up, she says to herself, “I made it.”
“Shall we?” I say, offering my elbow.
In the car, Elizabeth struggles with her seat belt, so I lean over to help. Our nervous energy makes this feel like a special occasion, and it is, but I worry. All week my sister has been looking forward to this lunch, and now I’m anxious that I haven’t sufficiently prepared Jane. As one of Elizabeth’s oldest friends, she will surely be shocked.
We’re meeting at Aquitaine. Elizabeth bobs and weaves behind the hostess, resembling a drunk, but no one seems to notice as we take our seats. It’s quiet today, the kind of environment that Elizabeth needs. I begin thinking it might go off just fine.
I spot Jane at the door, stylishly thin in a tailored business suit, with impeccable makeup and hair, straight from her corner office at the nearby bank. Jane and Elizabeth met at Northeastern and had kids at the same time. When Elizabeth first got sick, Jane delivered her fair share of meals and celebrated Elizabeth’s birthday. But since the cancer spread, we have stopped accepting her food and other generous offers, favoring privacy.
Jane comes toward us, beaming. I see her miss a step when she notices Elizabeth’s face, the mouth that won’t close and the cheeks that look stuffed with marbles. I immediately regret having planned the lunch. The last thing Elizabeth needs is a friend falling apart in front of her.
After a beat, Jane recovers her poise. “Hi, ladies,” she says. I can almost feel her effort to remain casual.
She slides into the booth and sits next to Elizabeth, kissing her on the cheek. Jane can’t seem to stop clenching her hands, but she smiles, determined to make small talk. “What beautiful earrings,” Jane says.
“Thank you,” Elizabeth says. “So happy to see you.”
Elizabeth orders the salade Nigoise, an old favorite, and again I foresee disaster. At home she has been eating only soft foods. “Do you want to order the soup?” I say brightly.
“No, the salad,” she insists, like a petulant child. Her voice is loud, and her inflection makes her sound tip
sy. Jane watches me from behind her menu.
“Salad it is,” I say. When the server comes, I order the soup for myself. I plan to switch plates with Elizabeth when our meals arrive, afraid that she’ll be embarrassed about chewing.
“So, what are Brooke and Lauren doing this summer?” Jane asks Elizabeth, buttering a piece of bread.
Elizabeth smiles but doesn’t answer. Jane leans forward and repeats the question a bit more loudly, remembering what I told her on the phone about hearing loss. Before Elizabeth can answer, the server arrives with lunch. Elizabeth digs into her salad, forks some lettuce into her mouth, and pockets it in her cheek.
“Good?” I ask.
She nods enthusiastically, waits a beat, and then spits into her napkin. Elizabeth takes another bite-rinse and repeat. So much for the soup! She gives me a look, and I can tell that she is annoyed about my being overprotective. The look makes no difference; I still intend to protect her.
When the coffee arrives, Elizabeth and Jane are chatting about their children, and it’s almost like old times. To my great relief, Elizabeth has become animated while discussing Brooke’s summer program at UPenn. Jane’s kids are off to Eu rope, doing a service program in Spain. Elizabeth is coherent, asking all the right questions, completely enjoying herself with a dear friend.
After our success, Jane embraces Elizabeth in the parking lot, then sets off in the direction of the bank. After I’ve got Elizabeth ensconced safely in her seat belt, we drive away. But as we leave the parking lot, I notice Jane leaning on a planter, retching and crying. My own eyes remain dry, as if a switch has flipped.
I decide to plan a string of new pleasures for Elizabeth: a manicurist at her house every Tuesday, a massage therapist on Friday, and a bouquet of her favorite peach roses for the weekend. I also tell myself that it’s time for her to dictate letters so that her children will have something to remember her by.
We arrive back at the Gordons’, and I unbuckle Elizabeth’s seat belt. We hold hands until the front door. “That was wonderful,” she says. “God, I’m tired.” We laugh.
I assist Elizabeth to her bedroom and help her change her clothes. She crawls under one of the afghans that Bubbe made for her, either as a child or as a new bride.
“Want to lie down with me?” she asks.
I slip in on the other side, and, once again, we hold hands. The bedside table is crowded with amber pill bottles, and I decide to find the ones for sleeping, but Elizabeth waves them away.
“I don’t take those anymore,” she says. It’s true—she has become a champion sleeper. I’m the one who needs the pills. Her breathing slows.
Before I go, I notice a teardrop in the corner of her eye, that part of my sister that still understands what is happening.
Chapter Twenty-One
Another week, another round of chemo. At the blood draw, Elizabeth rolls up a sleeve and makes a fist, filling three vials. I turn my head. Her veins are getting weak; her arms are a riverscape of blue rocks. When the phlebotomist releases the rubber band, she is faint.
We stand conjoined, as if someone with a needle and thread has sewn up our clothes, and meet Jake in the waiting room. He registers our presence with a quick nod, sips a coffee, and puts his BlackBerry face down on the table.
When it’s time to meet with Dr. Hamilton, the three of us walk together down the hall, enter the exam room, and take our seats. Elizabeth sits closest to the doctor’s desk, Jake beside her. I lean on the bed with my terrible notebook. Dr. Hamilton enters with a tender smile. I want to believe that he will do everything he can to help. It turns out that Dr. Hamilton and his wife belong to our synagogue. He is the doctor whom Richard, leveraging his contacts on the temple board, originally offered to call.
“How is your energy?” Dr. Hamilton asks Elizabeth.
“So-so,” she says. “I’m tired.”
“How would you rate your fatigue on a scale of one to ten?”
“Five.” Elizabeth looks at Jake for verification. He pockets his BlackBerry.
“She’s up at eight and has a soft-boiled egg,” Jake says. “Sleeps for three hours like a baby. The family has dinner at six thirty, and then she goes back to bed.”
“You mean, that’s when you leave,” Elizabeth says.
An awkward silence. Dr. Hamilton raises a brow. I watch Jake realize that Elizabeth understands the significance of his scheduling dinners at seven, and she doesnh care if it helps with business. Not now.
The doctor ignores our dirty laundry and presses on. He has Elizabeth stand to test her balance and strength. She performs the test, wobbly.
“How is your memory?” he asks.
“Last week I went out for lunch,” Elizabeth says.
“That’s lovely. What day?”
“I’m not sure—but it was nice to get out,” she says, with a quick smile.
“She’s disoriented,” Jake says. “When she takes a nap, she wakes up thinking it’s morning.”
“What causes this?” I ask. I know it makes the kids anxious to see Elizabeth asking for her poached eggs at dinner.
“It could be a side effect of radiation, or the cancer itself,” Dr. Hamilton says. “There’s really no way to know. Jake, how long does it take for Elizabeth to get her bearings?”
“Half an hour, with coaching.” He lets out a tired sigh.
The exam has shifted to an interview between Dr. Hamilton and Jake because Elizabeth can’t answer these questions. She listens, scrutinizing Jake’s responses. I find it unsettling for them to discuss Elizabeth as if she’s not even in the room, already too far gone to be included in a conversation about her own life. Dr. Hamilton reports that the spinal fluid they extracted shows few malignant cells. The cancer hasn’t gotten worse.
“That’s wonderful,” I say. Incredible what you’ll learn to accept as good news.
“Ready for treatment?” Dr. Hamilton asks Elizabeth.
“Yup. Time to put the chemo in my head,” she responds in a singsong. My sister yanks her wig and tosses it to me. She’s trying to bring comedy to the situation, but her personality is a bit off, and so is the humor.
“Here we go,” she says, trying to salvage the moment.
Thanks to the block used during radiation, Elizabeth’s hair is growing back-salt and pepper, not chestnut brown—offering scant cover of her skull and new scar. Her diamond studs sparkle, huge against her naked head. Dr. Hamilton takes his finger and feels through the stubble to find the catheter, a tiny hole that connects to a quarter-size reservoir now under Elizabeth’s scalp. He rubs antiseptic on her skull in this precise area, lowers the exam table to prone, and inserts a syringe to extract cerebrospinal fluid.
The doctor holds the syringe for us to see. “Pretty clear,” he says.
Clear is good; cloudy is not.
Knowing the pain we feel for Elizabeth, Dr. Hamilton asks if Jake and I want to assist in administering her treatment. Out of love for my sister, I open a sterile plastic bag the size of my palm and hand Dr. Hamilton the DepoCyt. Jake, getting ready to be the timer, looks at his watch. The chemotherapy will be injected for three minutes. Dr. Hamilton instructs us to let him know when each minute has passed so that he can push the fluid into Elizabeth’s brain evenly.
“My parents are here from New Orleans,” Dr. Hamilton says. “They’ve had no electricity or heat since Katrina, but their home is intact. Better off than most.”
“That’s too bad,” Elizabeth says from the table.
“How you doing down there?” the doctor asks.
“Fine. As long as it’s working.”
“We’ll know soon,” Dr. Hamilton says. “Plans for the weekend?” he asks, for either Jake or me to answer, but I stay quiet. I don’t tell anyone that I’ve begun dating again. They wouldn’t like the guy. It’s Richard.
“How’s the marathon training?” Dr. Hamilton asks, now looking at Jake. He has decided to run with a bib number from MGH and plans to donate the proceeds.
“I�
�m up to ten or twelve miles, a few days a week.”
Elizabeth groans. She’s disappointed in Jake for spending so much time training and wishes he would be with her. Jake has confided that in order to survive, he needs to keep his mind focused on something other than what’s happening with Elizabeth twenty-four-seven. He clearly assumed that Elizabeth doesn’t notice when he also goes off at night, and certainly not for a run. He leaves Brooke and Lauren doing homework on their laptops, supervised by Elizabeth’s nurses. On at least one occasion, however, this arrangement has backfired.
I flashback to when my cell phone rang recently after midnight, jolting me from a shallow sleep.
“Where is my dad?” It was Brooke, her voice filled with worry. “He won’t answer his phone.”
“Try to calm down,” I said. “I’ll find him. I’m sure there’s an explanation. Go back to bed, sweetie. He’ll be there when you wake up.”
Furious, I hung up with Brooke and called Jake. He answered on the third ring, but I could barely hear him over the roar of a bar.
“Jake, go home,” I said, imagining him in his Sox cap, holding a Grey Goose on the rocks, telling some stranger his tale of woe.
“Two minutes,” Jake says to Dr. Hamilton. “David is running the race with me. He did the New York City Marathon a few years ago.”
My sister closes her eyes and frowns. “Why run a marathon now?” she asks.
Jake trains his eyes on his watch. “To raise money, my dear. For cancer research. To help people like you—like us.”
“Research won’t help me.”
“Time’s up,” Jake says.
Dr. Hamilton withdraws the syringe, and a nurse—one of our favorites—knocks on the door. She’s here to swab the top of Elizabeth’s head with a sterile solution.
“Thanks,” Elizabeth says, as the kind nurse helps her to sit. “Whoops, little dizzy.”
I jump up to hold Elizabeth steady, and she thanks me.
As we leave, Dr. Hamilton touches my shoulder compassionately, congratulating a member of the team. One of us to hold the wig, one to time, one to inject the poison. Last week, over a glass of wine, Jake told me he would never take his own treatment this far.
Appearances Page 19