Authors: Rafael Yglesias
“I was sort of kidding,” Enrique said. In an attempt to be
interesting during the first hours of talk last night, he had exaggerated his mild disappointment into a wild grief over not having, for the first time in his life, a celebration of Thanksgiving and a Jewish Christmas with his half-and-half family and its half-sibling components.
“I know you weren’t really complaining. But, you know, like you were saying, your parents are in England for Christmas, and my friend Phil Zucker’s family is on a cruise, and there are at least two other friends who’ve told me they’re alone for the holidays, so I thought I should have a dinner for all the orphans.” Out came that staccato release of sudden laughter, and just as quickly it was reclaimed. “Is that crazy?”
“Sounds great,” Enrique lied. And to be convincing, he added, “I’d love to come.” Of course, it was the last thing he wanted, to be with Margaret and at least two or three other males.
“Oh my God, I’m late. I have to go. What’s your number?” He told her with a sinking feeling, and then came the disaster: “I’ll call you when I’ve figured out my Orphans’ Dinner. Bye!”
And so he was alone again with the black receiver for a companion, stuck in his narrow studio with its narrow twin bed, waiting for a call that he felt certain would never come.
H
E BROUGHT HER
home from Memorial Sloan-Kettering for the last time. For so portentous a journey there was little fanfare. After nearly three years of treatments, it was as if they had acquired additional members of their family, including the inevitable relative they were no longer speaking to. Of those doctors with whom there was still friendly congress, three stopped by with farewells and one with an argument.
The autocratic Iraqi Jew was the first to appear, less than an hour after Enrique informed his office that Margaret wanted to end all treatments, transfer into the hospice program, and die at home. The small, proud specialist walked into Margaret’s room alone and unannounced. That was unprecedented. His appearances had always been forewarned by his subordinates. When he did finally show up, it was with an entourage of fellow, intern,
nurse-practitioner, and a pair of medical students who were probably the age of Margaret and Enrique’s older son, Gregory, all of twenty-three. This solo performance heralded a new chapter, sadly limited to a single engagement, in their relationship.
He stood at the foot of her bed with a stern look, manicured hands at his sides. She peered up at him like a cowed and suspicious animal. He reminded Enrique of a conductor at Carnegie Hall, attempting to control a vast orchestra with little more than the force of his personality. He began with a concession, waving disgustedly at the feeding machine, evidence of the previous night’s failure. “We’re finished with that,” he said.
He went on to insist that she return to TPN’s intravenous method. He had already lost this argument a month ago. She had convinced the head of oncology and the Sloan psychiatrist that it wasn’t a life worth living. There was no reason to expect she would agree to go back. Nevertheless he made the doomed charge. The handsome, dictatorial, and—Enrique could now see—softhearted man argued passionately, and against all the evidence. He abandoned his manner of preening arrogance and openly pleaded with great feeling. “There are new drugs all the time,” he said. “You don’t know how long you can live on TPN. I have patients who have lived for years with metastasized cancers worse than yours. The scans show your tumors aren’t growing. We can find you a drug trial—”
Enrique knew that these statements were nonsense. Margaret had no tumor. Her bladder and its large invasive tumor had been removed two years ago. Her metastasis, found by accident during a surgery to relieve an intestinal blockage one year ago, was taking the form of small lesions, too small to be seen on CT scans, growing on the outside of her digestive tract. What could be observed was ascites, fluid filling her abdominal cavity, a sign of her cancer’s robust and deadly life. Since January she had gone
from being able to eat and drink to not being able to eat, to not being able to drink, proof that her cancer was advancing rapidly. While she lay in bed inactive, and TPN was pumping her full of two thousand, four hundred calories a day, she continued to lose weight and had no energy. She had had three serious infections within the last two months and had developed jaundice two weeks ago. As Margaret had observed about the friends she had made and lost in her advanced cancer support group, there seemed to be a tipping point with metastasized cancer. Everything indicated that she had begun her free fall. And yet. And yet Enrique found himself engaged by the specialist’s irrational invocation of what had certainly died for Margaret, namely the belief that further struggle was worthwhile. Enrique kept his peace, but the Iraqi’s words filled him with shame and doubt.
In September Enrique had supported Margaret’s search for a miracle cure. Her condition then, although she was tired and subject to infections and intestinal blockages, still allowed her to socialize, to travel, to laugh. Trying desperate measures had also reassured all who knew her, especially her sons, her parents, and her siblings, that everything had been done to save her life.
But for Enrique there had been the cost of time, robbed from their farewell. While she was still fighting her disease, Enrique did not raise the subject of her death—of what she hoped and expected for him and their children in a future without her. Although Margaret wanted Enrique to be with her every waking minute and close at hand while she slept, their talk was reduced to the practicalities of the now. They did not discuss the end.
The struggle since September had been difficult and ugly. They had had to argue bitterly with her urological oncologist (the family member they were no longer speaking to) because she declined to enter a drug trial he recommended. He retaliated by
resisting intense pressure from their friend, the head of oncology, to instead allow her to try off-protocol drugs. They had to find a new specialist outside of Sloan-Kettering who was willing to try off-protocol drugs. She endured long hours of treatment with two experimental chemos that didn’t do her any good and made her feel worse. This time giving up wasn’t surrender; it was acceptance. And yet hearing these irrational clichés of hope from a medical scientist, Enrique longed to believe.
Margaret answered the pleading doctor in utter despair. Tears flowed and her voice quaked while she curled up into a fetal position. She shrank from his words of optimism, wincing as if they were lashes of a whip. She pleaded, “I can’t do this, I can’t, I can’t do it anymore. I can’t go back to the TPN. I can’t stand the smell. I smell like rotten milk all the time. I can’t stand just lying here having it drip into me all day and all night just waiting to die. Please, please let me go…” She collapsed into body-racking sobs. Enrique fought his way past the hospital bed’s bars and her IV lines to enfold her in his arms. As Enrique pressed his lips to the hollow of Margaret’s smooth, almost translucent cheek, he saw the Iraqi wobble on his conductor’s stand, unsure of himself. It reminded Enrique of the other time the self-confident doctor had been knocked off his perch by Margaret.
They had met him only four months ago, when Margaret had to maneuver awkwardly back into Sloan’s service in order to be treated by this maestro. They had been told he was the best specialist in New York to fix her gastroparesis, the best to keep her nourished while they searched for a third or fourth or fifth experimental drug.
He had breezed in with an entourage of four, his white doctor’s coat billowing on his short frame, to announce that he had delayed a surgery to see her on short notice because of the entreaties of his good friend the head of oncology. He demanded, without so much
as a hello, to know why she had refused to enter the Phase 1 trial offered by the intractable urological oncologist.
Margaret had fixed herself up for this audition. She had worked meticulously on her wig to make its replica of her short black hairdo seem as natural as possible, and she had put on a pretty green floral skirt. She wore a white silk T-shirt smooth to her torso except for the bumps of the three access ports to the catheter installed above her right breast for TPN feedings and other intravenous medications. Her white teeth, bonded over twenty years ago into pretty and seamless proportions, shined a bold and cheerful smile at the Iraqi’s stern countenance. “Because I was just being used as a guinea pig,” she answered.
“So?” he scolded. “You have metastatic cancer. You’re incurable. Your only chance to survive is to be a guinea pig.”
“I don’t mind being a guinea pig,” she shot right back at him, aloft on an examination table, rocking her slim, pretty legs, like a girl on a swing, teasing the boys. “I mind being a guinea pig in a failed experiment.”
“What do you mean—a failed experiment?” he said, pronouncing the phrase as if it were contemptible and possibly not English. “How
could
you know—?”
She interrupted him. “It was obvious. It was a terrible drug. I would have been the last patient to enter the trial. They already knew the drug didn’t work. They needed one more guinea pig for their last cohort so they could finish the study and get the rest of their funding. The drug had only helped one patient live for six months, but she didn’t even have my kind of cancer—she had ovarian cancer. Everyone else dropped out before completing three full cycles because they said the drug took away hedonia.”
“Hedonia?” he mumbled, and now he seemed sure he was hearing something that wasn’t English.
“All pleasure from living,” Enrique explained softly. He had been told that if anyone could help Margaret out of this nightmare of vomiting every four hours with the regularity of an atomic clock, and keep her alive while they resumed treatment with the newest cancer drug available, Avastin, a drug that hadn’t been shown to help bladder cancer but might (why not? why couldn’t the unexpected happen?), it was this man. Enrique was sure these grandiose assertions about the Iraqi’s skill were the requisite exaggerations made in the desperate world of terminal patients, and intensified by New York’s culture, obsessed with celebrities to whom mythic abilities were ascribed. Although Margaret made fun of herself for believing in such claims, she was a devout. She was raised a nice Jewish girl from Queens, and in that enclave, having the best doctor was considered a basic necessity. She had been told by the powerful head of oncology to believe in this man, and warned that he was above being pressured by anyone. So Enrique did his best in tone and manner to appear submissive, especially because he was aware that, although Margaret respected authority, she was too brash, too demanding, too abrasive at times for men like this one, men who liked to walk astride the world, especially astride the female world. “Half the patients in the study stopped taking this drug before they got the full dosage,” Enrique said. “It’s called Epotholide, by the way. They stopped taking Epotholide because not only didn’t it help their cancer but it took away all pleasure. Anhedonia, I think, is the term for the inability to feel any pleasure.”
“Anhedonia,” the great man’s fellow repeated and wrote it down.
“Yes,” Enrique confirmed and added, apparently just chatting, “You know, it’s funny but that was the original title for
Annie Hall.
Woody Allen wanted to call it
Anhedonia.
Guess what? They didn’t think that would sell tickets.”
Margaret took Enrique’s pass of the ball. She smiled apologetically at the Iraqi and said, “My husband is in the movie business.”
That, of course, got the attention of the doctor’s entourage. “Really, what do you do?” the fellow asked, and both medical students turned Enrique’s way as if he had the answers to next week’s test.
“I’m a screenwriter.” Enrique shrugged as if it were embarrassing.
“He has a movie shooting right now,” Margaret said. “They’re in Toronto, but they’re coming to New York soon, right?”
“Yeah, they’ll be shooting down the block from here in three weeks,” Enrique mumbled to the floor.
Margaret got as far as impressing them with the cast before the Iraqi interrupted. “Enough chitchat,” he said to his team and then demanded of Margaret, “How do you know they only wanted you to fill out the last cohort?”
“I asked,” Margaret said and released her loud and quickly retracted report of a laugh. “If you ask, they have to tell you.”
The still frowning doctor turned on his heel and addressed Enrique. “You told her to ask?”
“No,” Enrique said. “She read the disclosure documents and figured out to ask.”
“You asked?” He whipped his head back to Margaret with an unexpected smile, a dawning of pleasure and illumination in his dark-eyed face. He regarded her with an attitude of admiration, long enough for Margaret, apparently unnerved by his look, to release another staccato laugh. “You are a smart woman,” he declared at last.
Margaret beamed. “And I am a cooperative patient. I really am. I will be very obedient. I promise. I will do everything you tell me to.”
“Good,” he said with a comical and self-knowing nod of satis
faction. “You hear that?” he turned to his entourage. “That’s what I like to hear.”
“I will be obedient,” Margaret continued, “but only if what you want me to do might actually help me.”
His lean face broadened into a wide grin. “You will obey me if you agree with me, is that it?”
“Exactly,” Margaret said, and the whole room laughed, with gratitude that somehow suffering and death had been mocked.
That was Margaret and Enrique’s last tag team cancer triumph, their final seduction of a succession of healers. Having charmed her new doctor, Margaret abruptly excused herself to use the bathroom. She retched up the bile that had accumulated and the water she’d drunk during the past three hours. The sound could be heard clearly through the thin door of the examination room by the senior doctor and his team. The group paused their medical cross talk about how to proceed with her case to listen to the eerie lack of struggle as she vomited; Enrique knew, from two months of observation, that she was bent over, mouth open, fluid coming out like a fountain, apparently gallons of it. The Iraqi asked Enrique, “How often does she have to do that?”
“Every four hours. Her stomach doesn’t empty at all. Here’s the report.” Enrique passed him the results of a grueling test a previous gastroenterologist had insisted she endure to prove that her vomiting every four hours wasn’t a hypersensitive reaction to chemotherapy nausea. They fed her scrambled eggs that had been irradiated to make them visible on a CT, and then ran her through the scanner every hour to see whether any of it had left her stomach. After four and a half hours, while Margaret writhed and moaned from the effort to keep her nuclear breakfast down, the technician saw on the scan that it hadn’t progressed at all, and let her throw it up. That was the end of two months of medical skepticism.
The specialist bowed his head to look at the test report and then announced, “We have to put the PEG in first thing tomorrow. She can’t live like this. It’s dangerous.”
Four long months had passed since that grateful day of relief, months so grim that the previous years of treatment seemed cheerful by comparison. The bold, girlish, teasing manner that had charmed her star doctor was gone now. Margaret hid in Enrique’s arms, in the fold of her crooked bed, without makeup, without wig, skin translucent from starvation, eyes bright and wide with despair and drugs, her hospital gown stained here with a brown splash of antiseptic and there with a drop of blood. This anhedonic Margaret was telling her doctor that despite her pluck, her nerve, her aggression, her flattery, and her compliance, she had nothing left. This Margaret who wanted to accept death was very different indeed.