The Year of Magical Thinking (6 page)

8.

T
hey had gotten off the plane.

They had picked up their shared bag.

Gerry was carrying the bag to the car rental shuttle, crossing the arrivals driveway ahead of Quintana. He looked back. Even today I have no idea what made him look back. I never thought to ask. I pictured it as one more case in which you heard someone talking and then you didn’t, so you looked.
Life changes in the instant. The ordinary instant.
She was lying on her back on the asphalt. An ambulance was called. She was taken to UCLA. According to Gerry she was awake and lucid in the ambulance. It was only in the emergency room that she began convulsing and lost coherence. A surgical team was alerted. A CT scan was done. By the time they took her into surgery one of her pupils was fixed. The other became fixed as they wheeled her in. I would be told this more than once, in each case as evidence of the gravity of the condition and the critical nature of the intervention: “One pupil was fixed and the other went as we wheeled her in.”

The first time I heard this I did not know the significance of what I was being told. By the second time I did. Sherwin B. Nuland, in
How We Die,
described having seen, as a third-year medical student, a cardiac patient whose “pupils were fixed in the position of wide black dilatation that signifies brain death, and obviously would never respond to light again.” Again in
How We Die,
Dr. Nuland described the failing attempts of a CPR team to revive a patient who had suffered cardiac arrest in the hospital: “The tenacious young men and women see their patient’s pupils become unresponsive to light and then widen until they are large fixed circles of impenetrable blackness. Reluctantly the team stops its efforts…. The room is strewn with the debris of the lost campaign.” Was this what the New York–Presbyterian ambulance crew saw in John’s eyes on our living room floor on December 30, 2003? Was this what the UCLA neurosurgeons saw in Quintana’s eyes on March 25, 2004? “Impenetrable blackness?” “Brain death?” Was that what they thought? I look at a printout of that day’s CT report from UCLA and still go faint:

The scan shows right hemispheric subdural hematoma, with evidence of acute bleeding. Active bleeding cannot be excluded. The hematoma causes marked mass effect upon the right cerebrum, subfalcial and early uncal herniation, with 19 mm of midline shift from right to left at the level of the third ventricle. The right lateral ventricle is subtotally effaced and the left lateral ventricle shows early entrapment. There is moderate to marked midbrain compression and the perimesencephalic cistern is effaced. A thin posterior falcine and left tentorial subdural hematomas are noted. A small parenchymal bleed, likely contusional, is noted in the right inferolateral frontal lobe. The cerebellar tonsils are at the level of the foramen magnum. There is no skull fracture. There is a large right parietal scalp hematoma.

March 25, 2004. Ten minutes past seven in the evening in New York.

She had come back from the place where doctors said “We still don’t know which way this is going” and now she was there again.

For all I knew it had already gone the wrong way.

They could have told Gerry and Gerry could be trying to absorb it before calling me.

She could already be on her way to the hospital morgue.

Alone. On a gurney. With a transporter.

I had already imagined this scene, with John.

Tony arrived.

He repeated what he had told me on the telephone. He had gotten the call from Gerry at UCLA. Quintana was in surgery. Gerry could be reached by cell phone in the hospital lobby, which happened to double (UCLA was building a new hospital, this one was overcrowded and outdated) as the surgical waiting area.

We called Gerry.

One of the surgeons had just come out to give him an update. The surgical team was now “fairly confident” that Quintana would “leave the table,” although they could not predict in what condition.

I remember realizing that this was meant as an improved assessment: the previous report from the operating room had been that the team was “not at all sure she would leave the table.”

I remember trying and failing to understand the phrase “leave the table.” Did they mean alive? Had they said “alive” and Gerry could not say it?
Whatever happens,
I remember thinking,
she will without question
“
leave the table.
”

It was then maybe four-thirty in Los Angeles, seven-thirty in New York. I was not sure how long at that point the surgery had been in progress. I see now, since according to the CT report the scan had taken place at “15:06,” six minutes past three in Los Angeles, that she had probably been in surgery only about half an hour. I got out an OAG guide to see who would still be flying that night to Los Angeles. Delta had a 9:40 p.m. out of Kennedy. I was about to call Delta when Tony said that he did not think that being in flight during the surgery was a good idea.

I remember a silence.

I remember setting aside the OAG.

I called Tim Rutten in Los Angeles, and asked him to go to the hospital to wait with Gerry. I called our accountant in Los Angeles, Gil Frank, whose own daughter had undergone emergency neurosurgery at UCLA a few months before, and he too said that he would go to the hospital.

That was as close as I could get to being there.

I set the table in the kitchen and Tony and I picked at coq au vin left from the dinner for the family after St. John the Divine. Rosemary arrived. We sat at the kitchen table and tried to develop what we referred to as a “plan.” We used phrases like “the contingencies,” delicately, as if one of the three of us might not know what “the contingencies” were. I remember calling Earl McGrath to see if I could use his house in Los Angeles. I remember using the words “if I need to,” another delicate construction. I remember him cutting directly through this: he was flying to Los Angeles the next day on a friend’s plane, I would go with them. Around midnight Gerry called and said that the surgery was finished. They would now do another CT scan to see if there was additional bleeding they had missed. If there was bleeding they would operate again. If there was not they would do a further procedure, the placement of a screen in the vena cava to prevent clots from entering the heart. About four a.m. New York time he called again, to say that the CT scan had shown no bleeding and they had placed the screen. He told me what the surgeons had told him about the operation itself. I made notes:

“Arterial bleed, artery gushing blood, like a geyser, blood all over the room, no clotting factor.”

“Brain pushed to the left side.”

When I got back to New York from Los Angeles late on the evening of April 30 I found these notes on a grocery list by the kitchen phone. I now know that the technical term for “brain pushed to the left side” is “midline shift,” a significant predictive factor for poor outcome, but even then I knew that it was not good. What I had thought I needed on that March day five weeks before were Evian splits, molasses, chicken broth, and flaxseed meal.

R
ead, learn, work it up, go to the literature.

Information is control.

On the morning after the surgery, before I went to Teterboro to get on the plane, I looked on the Internet for “fixed and dilated pupils.” I found that they were called “FDPs.” I read the abstract of a study done by researchers in the Department of Neurosurgery at the University Clinic in Bonn. The study followed ninety-nine patients who had either presented with or developed one or two FDPs. The overall mortality rate was 75 percent. Of the 25 percent who were still alive twenty-four months later, 15 percent had what the Glasgow Outcome Scale defined as an “unfavorable outcome” and 10 percent a “favorable outcome.” I translated the percentages: of the ninety-nine patients, seventy-four died. Of the surviving twenty-five, at the end of two years, five were vegetative, ten were severely disabled, eight were independent, and two had made a full recovery. I also learned that fixed and dilated pupils indicated injury or compression of the third cranial nerve and the upper brainstem. “Third nerve” and “brainstem” were words that I would hear more often than I wanted to during the weeks to come.

9.

Y
ou’re safe,
I remember whispering to Quintana when I first saw her in the ICU at UCLA.
I’m here. You’re going to be all right.
Half of her skull had been shaved for the surgery. I could see the long cut and the metal staples that held it closed. She was again breathing only through an endotracheal tube.
I’m here. Everything’s fine.

“When do you have to leave,” she asked me on the day when she could finally speak. She said the words with difficulty, her face tensed.

I said I would not leave until we could leave together.

Her face relaxed. She went back to sleep.

It occurred to me during those weeks that this had been, since the day we brought her home from St. John’s Hospital in Santa Monica, my basic promise to her. I would not leave. I would take care of her. She would be all right. It also occurred to me that this was a promise I could not keep. I could not always take care of her. I could not never leave her. She was no longer a child. She was an adult. Things happened in life that mothers could not prevent or fix. Unless one of those things killed her prematurely, as one had almost done at Beth Israel and another could still do at UCLA, I would die before she did. I remembered discussions in lawyers’ offices during which I had become distressed by the word “predecease.” The word could not possibly apply. After each of these discussions I would see the words “mutual disaster” in a new and favorable light. Yet once on a rough flight between Honolulu and Los Angeles I had imagined such a mutual disaster and rejected it. The plane would go down. Miraculously, she and I would survive the crash, adrift in the Pacific, clinging to the debris. The dilemma was this: I would need, because I was menstruating and the blood would attract sharks, to abandon her, swim away, leave her alone.

Could I do this?

Did all parents feel this?

When my mother was near death at age ninety she told me that she was ready to die but could not. “You and Jim need me,” she said. My brother and I were by then in our sixties.

You’re safe.

I’m here.

O
ne thing I noticed during the course of those weeks at UCLA was that many people I knew, whether in New York or in California or in other places, shared a habit of mind usually credited to the very successful. They believed absolutely in their own management skills. They believed absolutely in the power of the telephone numbers they had at their fingertips, the right doctor, the major donor, the person who could facilitate a favor at State or Justice. The management skills of these people were in fact prodigious. The power of their telephone numbers was in fact unmatched. I had myself for most of my life shared the same core belief in my ability to control events. If my mother was suddenly hospitalized in Tunis I could arrange for the American consul to bring her English-language newspapers and get her onto an Air France flight to meet my brother in Paris. If Quintana was suddenly stranded in the Nice airport I could arrange with someone at British Airways to get her onto a BA flight to meet her cousin in London. Yet I had always at some level apprehended, because I was born fearful, that some events in life would remain beyond my ability to control or manage them. Some events would just happen. This was one of those events.
You sit down to dinner and life as you know it ends.

Many people to whom I spoke in those first days while Quintana lay unconscious at UCLA seemed free of this apprehension. Their initial instinct was that this event could be managed. In order to manage it they needed only information. They needed only to know how this had happened. They needed answers. They needed “the prognosis.”

I had no answers.

I had no prognosis.

I did not know how this had happened.

There were two possibilities, both of them, I came to see, irrelevant. One possibility was that she had fallen and the trauma had caused a bleed into her brain, a danger of the anticoagulants she had been given to prevent emboli. The second possibility was that the bleed into her brain had occurred before the fall and in fact caused it. People on anticoagulants bleed. They bruise at a touch. The level of anticoagulant in the blood, which is measured by a number called the INR (International Normalized Ratio), is hard to control. The blood must be tested every few weeks and in some cases every few days. Minute and complicated changes must be made in dosage. The ideal INR for Quintana was, give or take a tenth of a point, 2.2. On the day she flew to Los Angeles it so happened that her INR was over 4, a level at which spontaneous bleeding can occur. When I got to Los Angeles and spoke to the chief surgeon, he said that he was “one hundred percent sure” the trauma had caused the bleed. Other doctors to whom I spoke were less certain. It was suggested by one that the flight alone could have caused sufficient changes in pressurization to precipitate a bleed.

I recall pressing the surgeon on this point, myself trying (one more time) to manage the situation, get answers. I was talking to him on a cell phone from the courtyard outside the UCLA Medical Center cafeteria. The cafeteria was named “Café Med.” This was my first visit to Café Med and my introduction to its most noticeable regular, a small balding man (I assumed a Neuropsychiatric Institute patient with walkaround privileges) whose compulsion it was to trail one or another woman through the cafeteria, alternately spitting and mouthing enraged imprecations about how disgusting she was, how vile, what a piece of worthless trash. On this particular morning the small balding man had trailed me out to the courtyard and it was hard to make out what the surgeon was saying. “It was the trauma, there was a ruptured blood vessel, we saw it,” I thought he said. This had not seemed to entirely address the question—a ruptured blood vessel did not categorically rule out the possibility that the ruptured blood vessel had preceded and caused the fall—but there in the Café Med courtyard with the small balding man spitting on my shoe I realized that the answer to the question made no difference. It had happened. It was the new fact on the ground.

D
uring the course of this call from the surgeon, which took place on the first full day I spent in Los Angeles, I recall being told several other things.

I recall being told that her coma could continue for days or weeks.

I recall being told that it would be a minimum of three days before anyone could begin to know what shape her brain was in. The surgeon was “optimistic,” but no prediction was possible. Many more urgent issues could come up in the next three or four or more days.

She could develop an infection.

She could develop pneumonia, she could develop an embolism.

She could develop further swelling, which would necessitate reoperating.

After I hung up I walked back into the cafeteria, where Gerry was having coffee with Susan Traylor and my brother’s daughters, Kelley and Lori. I remember wondering whether to mention the more urgent issues the surgeon had mentioned. I saw when I looked at their faces that there was no reason not to: all four of them had been at the hospital before I got to Los Angeles. All four of them had already heard about the more urgent issues.

D
uring the twenty-four December and January nights when Quintana was in the sixth-floor ICU at Beth Israel North I had kept on the table by my bed a paperback copy of
Intensive Care: A Doctor’s Journal,
by John F. Murray, M.D., who had been from 1966 to 1989 chief of the Pulmonary and Critical Care Division at the University of California medical school in San Francisco.
Intensive Care
describes, day by day, a four-week period in a San Francisco General Hospital medical ICU for which Dr. Murray was at the time the attending physician responsible for all patients, residents, interns, and medical students. I had read this account over and over. I had learned much that proved useful in the calibration of my daily dealings with the ICU doctors at Beth Israel North. I had learned for example that it was often difficult to gauge when the time was right for extubation, the removal of an endotracheal tube. I had learned that a common barrier to extubation was the edema so predictably seen in intensive care. I had learned that this edema was less often the result of an underlying pathology than of an excess in the administration of intravenous fluid, a failure to observe the distinction between hydration and overhydration, an error of caution. I had learned that many young residents made a similar error of caution when it came to extubation itself: their tendency, because the outcome was uncertain, was to delay the procedure longer than necessary.

I had registered these lessons. I had made use of them: the tentative question here, the expressed wish there. I had “wondered” if she might not be “waterlogged.” (“Of course I don’t know, I just know how she looks.”) I had deliberately used the word “waterlogged.” I had noticed a stiffening when I used the word “edema.” I had further “wondered” if she might not be better able to breathe if she was less waterlogged. (“Of course I’m not a doctor, but it just seems logical.”) I had again “wondered” if the monitored administration of a diuretic might not allow extubation. (“Of course this is a home remedy, but if I felt the way she looks I’d take a Lasix.”) With
Intensive Care
as my guide it had seemed straightforward, intuitive. There was a way to know if you had made headway. You knew you had made headway when a doctor to whom you had made one or another suggestion presented, a day later, the plan as his own.

This was different. A certain derisive phrase had occurred to me during the edema contest of wills at Beth Israel North:
It’s not brain surgery.
This was. When these doctors at UCLA said “parietal” and “temporal” to me I had no idea where in the brain they were talking about, let alone what they meant. “Right frontal” I thought I could understand. “Occipital” I thought suggested “eye,” but only on the misconceived reasoning that the word began with “oc,” like “ocular.” I went to the UCLA Medical Center bookstore. I bought a book described on its cover as a “concise overview of neuroanatomy and of its functional and clinical implications” as well as an “excellent review for the USMLE.” This book was by Stephen G. Waxman, M.D., chief of neurology at Yale–New Haven, and was called
Clinical Neuroanatomy.
I skimmed successfully through some of the appendices, for example “Appendix A: The Neurologic Examination,” but when I began to read the text itself I could think only of a trip to Indonesia during which I had become disoriented by my inability to locate the grammar in Bahasa Indonesia, the official language used on street signs and storefronts and billboards. I had asked someone at the American Embassy how to tell the verbs from the nouns. Bahasa was a language, he had said, in which the same word could be either a verb or a noun.
Clinical Neuroanatomy
seemed to be one more case in which I would be unable to locate the grammar. I put it on the table by my bed at the Beverly Wilshire Hotel, where it would remain for the next five weeks.

O
n further study of
Clinical Neuroanatomy,
say if I woke in the morning before
The New York Times
had arrived with its sedative crossword puzzle, even “Appendix A: The Neurologic Examination” seemed opaque. I had originally noticed the obvious familiar directives (ask the patient the name of the president, ask the patient to count backwards from one hundred by sevens), but as days passed I seemed focused on a mysterious narrative, identified in Appendix A as the “gilded-boy story,” that could be used to test memory and comprehension. The patient could be told the story, Dr. Waxman suggested, then asked to retell it in his own words and explain its meaning. “At the coronation of one of the popes, about 300 years ago, a little boy was chosen to play the part of an angel.”

So began the “gilded-boy story.”

So far clear enough, although potentially troubling details (three hundred years ago? play the part of an angel?) for someone emerging from coma.

It continued: “So that his appearance might be as magnificent as possible, he was covered from head to foot with a coating of gold foil. The little boy fell ill, and although everything possible was done for his recovery except the removal of the fatal golden covering, he died within a few hours.”

What was the “meaning” of the “gilded-boy story”? Did it have to do with the fallibility of “the popes”? With the fallibility of authority in general? With the specific fallibility (note that “everything possible was done for his recovery”) of medicine? What possible point could there be in telling this story to a patient immobilized in a neuro ICU at a major teaching hospital? What lesson could be drawn? Did they think that because it was a “story” it could be told without consequence? There was a morning on which the “gilded-boy story” seemed to represent, in its utter impenetrability and apparent disregard for the sensitivity of the patient, the entire situation with which I was faced. I went back to the UCLA Medical Center bookstore with the thought of checking other sources for an elucidation, but there was no mention of the gilded-boy story in the first several textbooks I picked up. In lieu of checking further, I bought, since the afternoon highs in Los Angeles were by then in the eighties and I had flown west with only the late-winter clothes I had been wearing in New York, several sets of blue cotton scrubs. So profound was the isolation in which I was then operating that it did not immediately occur to me that for the mother of a patient to show up at the hospital wearing blue cotton scrubs could only be viewed as a suspicious violation of boundaries.