It is hard to do justice to the delicacy and precision of the surgery Dr. Alain was performing. At this point he mapped out the surface of the brain and decided how to approach the tumor. The microscope was brought up, he incised the delicate pia-arachnoid “with micro scissors” then the sulcus was “splayed apart using gentle traction.”
Despite the even tenor of the Operative Report, one can sense at this point a certain satisfaction at having reached, so to speak, the heart of the matter, perhaps even a certain awe at gently manipulating the human brain, of all the organs the most complex and mysterious. At the base of the sulcus, a tiny trough between two ridges, he made a small opening into the underlying brain. “A millimeter or two [from] the opening, dark fluid was noted to erupt consistent with hemorrhagic fluid within the tumor.” Here was the “necrosis around the tumor,” which the neurologist in Poughkeepsie had pointed out to us, the blood and dead matter that the tumor created as it made room for itself inside the brain—a metastatic brain tumor is like a bullet, it cuts its own channel through the brain tissue, more slowly, of course, but with equally devastating effect. “The opening was then enlarged underneath the microscope and small cottonoid patties inserted over at the edge of the corticoid ribbon to protect it. A combination of bipolar cautery and suction was . . . utilized to remove the bulk of the tumor” and specimens were taken for analysis, “the results coming back as . . . consistent with melanoma . . .
“Once the debulking [had] been achieved, the rim of the tumor was gently peeled away from the adjacent brain tissue . . . careful inspection failed to reveal any residual tumor.” Dr. Alain irrigated the area, sewed up the layers he had incised, replaced the bone flap “using cranial plates and screws,” sewed up the scalp, removed the cranial head tongs, then “a full head dressing” was applied.
The surgery was completed in almost exactly the four hours he had mentioned.
Sitting alone in the waiting room, I plowed through accumulated mail and started in on some of the material I had printed out for myself about metastatic melanoma brain tumors, perhaps not the wisest choice of reading material in the circumstances. I had Googled a lot of pieces on the subject, more than I really wanted, the way a trawler indiscriminatingly brings a whole lot of fish to the surface in its net, not all of which are worth keeping. Most of my reading these days was about MM (as metastatic melanoma is referred to by many of the doctors). One of the side effects of cancer—I had experienced it at the time of my own two cancer surgeries—is the inability to focus on anything else. In the few days since Margaret’s diagnosis I had lost the ability to enjoy reading fiction, or any interest in nonfiction, and given up making a small daily ceremony out of reading every section of the New York Times except Sports, even the letters to the editor and the obituaries. Magazines piled up, television series we both enjoyed and normally never missed went unwatched, cancer filled up our lives. Cancer does that; it not only attempts to take over the body, it attempts to take over life, and very often succeeds.
Most of what I was reading did not tell me more about Margaret’s brain tumor than I already knew. Some of the personal stories from patients or their loved ones were distressing, and few of them had a happy ending. The importance of speech and physical therapy after surgery was a frequent subject, and I made a note to ask Colleen whether I could arrange for therapy at home once Margaret was discharged from the hospital. A sentence in one of the more academic sites, Journal of Medicine and Life, caught my attention sharply. “The prognosis of patients with metastatic malignant melanoma is grim.” This was the equivalent of a blow to the solar plexus. It appeared at the very beginning of an article titled “Survival Rates of Patients with Metastatic Malignant Melanoma” cowritten by several oncologists in the flat tones of a scientific paper, and was basically statistical. I read on, with a sick feeling in the pit of my stomach. This was information I did not want to have, presented in its coldest and most mathematical form.
Mark Twain remarked that there are “lies, damned lies and statistics” (he may have borrowed the phrase from Benjamin Disraeli), but these spoke for themselves loud and clear. Of patients who had a complete surgical resection of a skin melanoma in the survey, only 23 percent were alive five years after the excision. The “lentigo maligna melanoma” on Margaret’s right cheek had been excised almost exactly five years ago, so in one sense she was lucky to have survived for so long without any indication of metastases elsewhere in the body. Had the surgeon who excised the melanoma on her face so skillfully been overconfident when she told us that she got it all? Should she have advised us that Margaret should have a PET scan every year just to be on the safe side? An even worse question: Should we have thought about it ourselves? The answer was, yes, of course we should have, but Margaret had lived through the five years since that surgery fit, active, without symptoms or health problems of any kind. There had been no reason to suppose that melanoma was metastasizing slowly, insidiously in her body, or, to quote from the survey, that “40.5% of the patients [who had surgery for a ‘cutaneous MM’] developed metastases in different organs, especially the brain.” Reading on, I noted that an “MM patient with brain metastasis had a risk of dying from this disease about 7 fold higher” than elsewhere in the body and that “metastatic MM has a dismal prognosis with a high mortality rate.” The article ended with the flat statement that “the current treatment of brain metastasis is not satisfactory anywhere in the world.”
The next article I picked up, this one from the Mayo Clinic, suggested that “complementary treatments” for brain tumor, by which they meant when all else had failed, might include acupuncture, art therapy, exercise, meditation, and music therapy. I did not think that Margaret was likely to take up meditation, still less art or music therapy, under any circumstances. She would want to resume the life she knew, and her first instinct would be to fight hard for it. The Mayo Clinic, however, also emphasized the importance of physical, occupational, and speech therapy in rehabilitation following brain surgery, and recommended that the patient “find a good listener who is willing to listen to you talk about your hopes and fears.”
Easier said than done, I thought. Margaret was not someone who would necessarily want to talk to anybody about her hopes and fears. The only friend who had been close enough to her for that was poor Mayo Loiseau Gray, something of a kindred spirit, who for a variety of reasons had run out of hope and killed herself about thirty years ago. Margaret was made of sterner stuff, although she too had moments of depression, loneliness, and despair even when she was well, sudden descents into the depths from which it was difficult to rise. She was kept from sinking like Mayo by physical activity, the sense of command and freedom she felt on a horse, and by her love of animals—taped to the window frame in front of her desk was a treasured piece of paper with some lines by the American nature writer Henry Beston: “For the animal shall not be measured by man, in a world older and more complete than ours they move finished and complete . . . They are not brethren, they are not underlings, they are other nations, caught with ourselves in the net of life and time.” This was as near to a system of belief as Margaret had, and not, I thought, a bad one.
In the drab waiting room of WMC—the vast scheme of redecoration at the hospital had not yet reached it—I had suddenly the fear that Margaret and I were to some degree “other nations,” as perhaps we all are, and that I might not be the “good listener” the Mayo Clinic had in mind. She had often complained that I did not listen to her, or more precisely that I did not hear what I didn’t want to hear. After all, what woman has ever not thought this about the man in her life? On reflection I had to admit that she was right. Whatever else I did, I would have to start listening, we were not people with large families, there were just the two of us, we had nobody to fall back on except ourselves.
As if to emphasize this point, large families appeared from time to time in the waiting room: a big Hispanic family with many children, the older women dabbing their eyes with a hand
kerchief and crossing themselves, speaking in hushed whispers; an Asian family, which had brought along bags full of food in plastic containers, plates, and even a tablecloth and napkins for a full meal; a Russian family of immensely fat men in skintight shorts, the women with handbags big enough to contain a bowling ball. All of these groups left quickly one after the other, either because they were in the wrong waiting room or when they were summoned by a nurse, leaving me alone with my granola bar and my reading material. Whatever surgery a member of their family was undergoing, it was not taking as long as Margaret’s; they came and went, I stayed. I felt sure that they would be there to take turns looking after the patient and listening to him or her, that was what families were for, push come to shove, but we had no such resource. We had always imagined we could handle everything by ourselves. I was beginning to have grave doubts about that.
I continued to read, until my eye caught a note somewhere that “occupational therapy” should include the patient’s learning to eat again with a knife, fork, and spoon, and that the occupational therapist should provide specially shaped utensils with padded handles to enable the patient to practice using them in conditions that were as realistic as possible. It took a while for this to sink in. The notion that a person recovering from brain surgery might have to learn how to hold a spoon—a special spoon, not even an ordinary one—had not occurred to me, nor I was sure, to Margaret.
The whole subject of rehabilitation was obviously going to present more difficulties than I had supposed. If Margaret had to learn to eat all over again, what else would she need to learn? Our house is full of stairs—would she be able to go up and down them? I made a mental note that we might need more handholds in the bathroom, perhaps even a stair lift? How long would it be before Margaret could drive again? A more sobering question: Would she be able to drive again? How long before she could mount a horse? Or wash her hair? Or put on makeup? Or make a cup of tea? (Being English, we don’t use tea bags.) Our minds had been focused on the immediate future—the surgery—not on what life would be like after surgery. The more I read about rehabilitation, the more questions I had. I would have to find someone who could answer them, and quickly.
The waiting room began to seem like a lonesome place as the afternoon wore on and it emptied out, leaving me alone. For some reason the room seemed darker, but perhaps it was just my mood. Just after five o’clock there was a certain noticeable buzz in the hall outside, nurses springing out of their chairs, the kind of thing that you see in the armed services at the approach of a senior officer, people suddenly looking busy and checking their uniforms. This, as I should have guessed, heralded the approach of Dr. Alain. Unlike many surgeons, he did not appear in his scrubs, but instead wore a tie and a freshly pressed white coat. He sat down beside me and put one hand on my shoulder.
“It’s good news,” he said. “We removed the tumor.”
“Will she be all right?”
He nodded, his expression ever so slightly cautious, that of a man who had learned by experience not to promise more than he could deliver. He meant, I realized later, that she was all right now, she had survived the surgery, there would be radiation to come and much else besides, with brain surgery for a metastatic melanoma there could be no guarantee. We chatted briefly, the surgery had gone smoothly, just as planned, she was in good hands. I asked if I could see her. Not yet, he said, she was being moved to the Neuro Intensive Care Unit, I should wait there until one of the nurses brought me in to see her.
It might be some time, he warned.
The Neuro-ICU was a long way away, back down to the ground floor, then on through many unmarked turns and passages to another bank of elevators that lifted me to a different world. Here, there was a hushed silence, no press of visitors, big double doors that swung closed automatically with a pneumatic swoosh. I asked if I could see Margaret, and was told that a nurse would come out for me eventually—I was to be patient, it would be some time. Behind the reception desk there was a big white plastic board with the names and the medical status of a dozen or so patients. Margaret’s name had not yet been added to it.
Margaret had been concerned about whether or not she would be able to have a private room in the hospital. She had a strong sense of privacy, and would not have been comfortable sharing her helplessness with a stranger, but this proved difficult to arrange. No matter how many times I had talked to the admissions office, it was impossible to get a guarantee, it was on an if-and-when basis, Margaret would get a private room if one was available when she needed it, and that was that. Knowing how strongly Margaret felt about this, I nerved myself up to ask Dr. Alain if he could intervene on her behalf—I don’t normally like to pester busy people for small favors—and he told me not to worry, so I assumed it had been taken care of.
Now, in my brief glimpse of the Neuro-ICU, I saw why. Each patient had his or her own “single-occupancy” room, starkly modern and futuristically designed, painted in white and soothing, muted earth tones, with a closed-circuit camera above the bed and a video system to monitor the patient. One wall of the room was a glassed-in booth so that the nurse on duty could keep the patient in view at all times while sitting at his or her desk and computer monitor in the hallway—one nurse to a patient. Above the bed there was a swinging overhead light like that of an operating room, a towering bank of monitors, screens and computers showing a mass of illuminated graphs and flashing numbers next to the bed, and a two-way-mirror flat-screen television set into the wall facing the bed. A large window to the left of the bed gave a view of the rolling green hills of Westchester County. It would be hard to imagine anything more private than this.
At the far end of the hallway was a desk almost the width of the building behind which a mass of screens and monitors blinked and flashed. The only sounds were the occasional muffled ring of a bell and the hum of the air-conditioning system. It was like being on a spaceship. I was reminded of Stanley Kubrick’s 2001: A Space Odyssey, but without the music. If I had not already known how serious the surgery was, the sight of the Neuro-ICU would have told me all I needed to know.
The waiting room here was smaller and cozier than the previous one, with a sofa and a coffee table—I would become familiar with every inch of it over the next few days—and two bathrooms, so there was no need to wander down the hall looking for one. Since I was alone, I found the mute button on the TV remote to silence it and sat down to wait. In about half an hour a large, cheerful, bearded man, looking somewhat like Santa Claus in nurse’s scrubs came in. “Margaret’s husband?” he asked.
I said I was. He was Margaret’s day nurse, and he instantly communicated a rare combination of total commitment and caring. People constantly complain about the impersonality of the medical system, and there is some truth to that as it undergoes a transition to ever larger medical groups and hospital conglomerates on a huge scale, but at what is called in the British armed services “the sharp end of the stick,” where actual hands-on patient care takes place, it is constantly amazing how much people care.
“You can see her now,” he said.
I asked if she had said anything. A few words, he said—it would take some time before the effects of the anesthesia wore off, her speech was not yet clear. I should not expect too much at this point.
I gathered up my things—our things—and followed him through the double doors, and past his glassed-in cubbyhole desk into Margaret’s room. The floor was littered with the debris of emergency medical care, it is only when the patent is stable and recovering that everything is neat and tidy, when serious things are going on, doctors and nurses rip open the sterilized plastic packages and pouches that contain instruments, tubes, needles, and dressings and drop them on the floor, there isn’t time for tidiness. The blinds were partly drawn, so the room was like an aquarium lit by flashing lights and graphs from innumerable monitors. Margaret seemed dwarfed in it by the banks of instruments towering on each side of her bed, her head was covered with what looked like a whit
e eighteenth century Turkish turban shaped like a giant Hershey’s Kiss, tubes ran in and out of her, she looked tiny and heartbreakingly fragile, not at all like the person I knew. He drew up a chair for me, I sat down and put my hand in hers. There was no squeeze of recognition on her part. Her eyes were closed.
“She knows you’re here,” he said softly, then he looked over all the instruments and monitors, made a few adjustments, and withdrew to his glass booth, from which he could keep an eye on things. Apart from her gentle breathing, there was no sign of life from Margaret except the slow drip of innumerable plastic bags into the IV in her wrist, and the even slower drip from her catheter into another plastic bag hanging from the bed. We sat like that for a very long time, until I was worried that I might have to leave at the end of visiting hours before she spoke, then all of a sudden her lips moved. I leaned as close as I could to hear her and she whispered more clearly than anything she had spoken over the past few weeks, “I wish I were dead.”
PART II
“I don’t want to be sent away somewhere to die.”
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