2.
ONCE WE WERE home, Margaret went to the barn to see her horses. She derived a kind of comfort from their presence. They could not be cuddled with like cats and don’t project total devotion and loyalty as many dogs do, but Margaret would place her head against the shoulder of one of them and somehow draw from the horse a degree of sympathy that most people would not. Her horses calmed her even at her most anxious moments in a way that nothing else could. I knew better than to intrude, so I went to my office and began to draw up a list of the people I needed to call.
It quickly grew to a daunting length. I put it to one side for the moment and began to go through the thick wad of papers I had brought home, separating the ones that Margaret would need to sign and the forms that would have to be filled out. To my surprise, there was a copy of the radiologist’s report. I began to read it, with the kind of guilty feeling that accompanies reading someone else’s mail. Some of it was above my head, other parts I could tease the meaning out of in layman’s terms. “There is a mass in the left mid parietal lobe . . . This mass has both solid and necrotic components and vasogenic edema as well as evidence of prior hemorrhage . . . This may represent a primary brain neoplasm such as, but not limited to, an astrocytoma or glioblastoma multiforme but a metastasis cannot be excluded based on this exam.”
The words “vasogenic edema” stumped me momentarily, but after looking up the phrase, I took it to mean swelling. The tumor had been there for some time, I surmised, and growing, and was surrounded by dead cells and fluid, together with blood from a “prior hemorrhage,” all that was clear enough, however dismaying. I wondered if the “prior hemorrhage” had been responsible for Margaret’s difficulties with using the fingers of her right hand. Remembering John Gunther, I knew an astrocytoma was bad news, a glioblastoma was fatal news, and there was a difference between “primary” brain tumors—that is, those formed in the brain but which do not travel elsewhere—and metastatic brain tumors, which have been formed by cancer cells traveling from elsewhere in the body and are very bad news indeed. “Mass effect” I understood vaguely. As the tumor grew it pushed away the healthy brain tissue to make room for itself, but what really caught my eye was the size of the tumor: “3.5 x 2.7 x 3.4 cm in size.”
At first I thought I had misread it and mistaken millimeters for centimeters, but I read it again, and there was no doubt which it was. I had attended school in Switzerland, but those of us there who were British or American still clung to our own archaic system of measurement since it would be needed for our college or university entrance test, so even at this late stage of my life my mind did not easily visualize objects, distance, temperature, weight, or volume measured in metric units. My mind still functioned in pints and inches, not liters and centimeters.
I pulled out a ruler, measured off three and a half centimeters, and my stomach lurched as I came to grips with the fact that the tumor in Margaret’s brain was not much less in volume than a ping-pong ball. This was a large mass to imagine growing in the tightly packed interior of Margaret’s skull.
I skimmed through the rest of the report, most of it describing the results as “unremarkable,” only to notice under “Lungs/Pleura” a brief note of “a 7mm nodule in the left lower lobe,” a “6mm nodule in the right lower lobe,” a “questionable 7mm nodule in posterior of the right lung base,” and “a 7 x 9mm cystic lesion” in the pancreas. These were presumably “the couple of spots of concern” the doctor had mentioned as we were leaving. I paused to consider the possibility that Margaret’s problem might be more widespread than her brain tumor, frightening though that thought was.
The first question, of course, was whether or not to share all this with Margaret, but it seemed obvious to me that she already had enough to deal with at the moment. She had to absorb the news that she had a malignant brain tumor, as well as the idea of having a brain biopsy that entailed drilling a hole through her skull the day after tomorrow. It was difficult to know whether she had heard the neurosurgeon’s remark about the presence of other tumors in her body, or if that had simply not registered in the shock of learning about the malignant brain tumor. Either way, there did not seem anything to be gained by reading her the radiologist’s report or explaining what it meant in detail, even had I been equipped to do so.
I slipped the radiologist’s report to the bottom of the pile of papers on my desk (and with some degree of guilt shelved it at the back of my mind for the moment) and began to fill out the forms—previous medical history, current medications, insurance information—all of which was soon going to become second nature to me over the next year, so much so that I took to carrying the information around with me in a special briefcase, together with my reading glasses and a ballpoint pen, to speed up the process of filling out forms on a clipboard in innumerable doctor’s and hospital waiting rooms.
I thought what we needed was a second opinion, but we needed it fast—the neurosurgeon’s reaction to Margaret’s brain scan made it clear that delay was not an option. When I had been diagnosed with prostate cancer in 1994, Margaret and I sought out second opinions from surgeons in New York City, Boston, and Baltimore, but there was time to spare, nobody suggested that a week or two one way or the other would make any difference, prostate cancer is usually slow-growing. When I finally chose Johns Hopkins in Baltimore it was on the recommendation of numerous friends, one of whom declared passionately that he would “lie down in the street in front of traffic” to stop me from going anywhere else. Despite this offer of self-sacrifice I had always believed since that I made the wrong choice, that Memorial Sloan Kettering Cancer Center in New York City would have been better by far (admittedly this comes under the category of not crying over spilled milk), but I could not complain that we didn’t get an opinion from enough eminent urologists before reaching a decision. Getting a second opinion from distinguished specialists of any kind is usually a long, slow process; it’s hard enough to even get an appointment with one, let alone travel to Boston to see whoever is reputed to be the best neurosurgeon at Massachusetts General Hospital, or to Rochester, Minnesota, to see his or her counterpart at the Mayo Clinic. Nor are specialists necessarily sympathetic to “doctor-shopping,” even if we had the time to do it. Besides, while almost every man over the age of fifty has a recommendation to make about a urologist, not many people have a favorite neurosurgeon.
As I looked through the scribbled notes of people I needed to call, a name on one slip of paper caught my attention: Dr. Alain C. J. de Lotbinière. Margaret’s diagnosis had altogether erased from my mind the fact that I was scheduled to speak about Hero, my biography of Lawrence of Arabia, at a book club dinner being held at the Kittle House, a restaurant in Chappaqua, New York, on Monday evening next week, an event that had been arranged months ago. The invitation had come from Dr. de Lotbinière. Whatever was going to happen, it was clear to me that I was probably not going to be giving a talk about T. E. Lawrence Monday night.
No author likes to cancel an event at the last moment that was arranged months in advance. It happens, of course, in our part of the country everybody understands that events scheduled during the winter are dependent on the weather—a snowstorm that shuts down the Taconic Parkway cancels all obligations—but perhaps because my mother was an actress the tradition that “the show must go on” had a certain resonance for me. Come to that, Margaret was not someone who would normally let bad weather or illness cancel her plans. I was fairly sure that if I asked her she would tell me to carry on, but who could foresee what we might be doing four days from now?
I picked up the telephone to call the organizer of the event, remembering as I did so that Dr. de Lotbinière—and his father—had attended the same boarding school that I did in Switzerland, indeed that had been the reason I accepted his invitation to speak about Lawrence to his group in the first place, even though my biography of him had been published six years ago. Among those who attended Le Rosey “the old school tie” remained figuratively and literally a strong bond, not something to be taken lightly. Apart from “sportsmanship,” one of the basic principles that had been drummed into us in several languages at Le Rosey was that when a Roséen said he was going to do something, he must do it.
I had several numbers for Alain de Lotbinière, but I remembered that he had told me to use that of his cell phone if I needed to reach him. He answered at the first ring, in a sonorous, low-pitched, polite, and even soothing voice, with no more than the slightest suggestion that he was, at the very least, trilingual, but then so are most people who have gone to a boarding school in Switzerland. After he had told me how much he was looking forward to Monday night I told him, with some embarrassment, that I was calling to say that I could not be there. Why? he asked, without any trace of the impatience he must surely have felt at my canceling my appearance at an event that had been planned so far in advance. I explained that Margaret had been diagnosed with a malignant brain tumor, and that I would surely have other things on my mind this coming Monday than Lawrence’s hopes for the Middle East in 1919.
Yes, he replied in the same calm, soothing voice, of course he could understand that. The other members would be disappointed, but many of them were doctors, they would understand. We could put Lawrence off to a later date, when Mrs. Korda’s problem had been resolved. I explained that as yet we had no idea of what was in store for her, or how we would deal with it.
That was only to be expected, he said, and perhaps he could be of some help—he was himself, as it happened, a neurosurgeon of some experience. It came back to me quite suddenly that of course I knew that. It had not seemed to me important at the time, but I recalled that Alain de Lotbinière’s emails came from Brain & Spine Surgeons of New York, in White Plains. He was not just a neurosurgeon, but a distinguished one, medical director of the Cancer Treatment and Wellness Center at Northern Westchester Hospital, an associate professor of neurosurgery at Yale University Hospital for seventeen years, with a string of initials after his name. I had looked him up when he first called, then promptly put it out of my mind since I had not imagined that either of us would be in need of a brain surgeon.
De Lotbinière understood the need for urgency without my mentioning it. He would make time to see us at eleven fifteen a.m. the day after tomorrow, he said. I should bring Margaret’s brain scan with me. He would not mind at all giving us a frank second opinion, or our seeking another one afterward, although he too urged me not to waste time—a malignant brain tumor was a very serious matter.
“By the way,” he added, “whatever you decide to do, until I have reviewed the scan myself, don’t let her have a brain biopsy.”
I tend to make friends instantly; Margaret’s instinct was more cautious. Once she had made a friend, he or she remained one for life, but she had a certain skepticism when it came to my sudden enthusiasms for somebody new. Although Margaret sometimes looked imperious to strangers, she was in fact rather shy, very English in the way she did not open up immediately to people she had just met—it took a while before her robust sense of humor and friendliness shone through. Ordinarily, she might not have been swept away by my conviction that Dr. de Lotbinière was the right man for her to see, and sensibly she put very little faith in the fact that he had been to the same boarding school as me—the bond of “the old school tie” carried no weight for her—but she had not liked the neurosurgeon we had seen in Poughkeepsie, and in any case preferred making a trip down to Mount Kisco and back for a consultation to having a hole drilled in her head. After all, who wouldn’t?
I dealt with the delicate task of letting the neurosurgeon in Poughkeepsie know that we were going to seek a second opinion and that Margaret would therefore not be coming for a biopsy on Thursday morning—fortunately I was able to leave a message, rather than having to argue about the merits of a brain biopsy with him.
The next day might have been idyllic, had it not been for Margaret’s diagnosis. I was, atypically, at loose ends, having called Mary Higgins Clark, whose editor I had been for over fifty books, early that morning to explain that I could not attend the lunch celebrating the publication of her latest novel, As Time Goes By, the first time I had missed one in forty years. Margaret thought I should have gone anyway, but it would have meant my being away for the whole day, and I was uncomfortable with the idea. The thought had crossed my mind—and surely hers—that there was no knowing how many more days like this we would have together. It was beautiful spring weather. We rode together, walked a couple of miles, and in the afternoon Margaret drove to Rhinebeck for a manicure, as she did every Wednesday, followed by an early dinner in the Tavern of the Beekman Arms, which we always enjoyed.
It would not have been in keeping with Margaret’s character to display any sign of nerves. The British war poster of 1939 and 1940 might have been written with her in mind, “Keep Calm and Carry On,” words that summed up a whole outlook on life. Whatever might be going on in Margaret’s mind, she would not want to display fear, although I could not help noticing that the fingers of her right hand were trembling ever so slightly, so that her knife rattled against the edge of her plate.
It wasn’t something she could control, I do not even think she was aware of it. It was not her mind that was making her fingers tremble, I know now that it was simply the tumor pressing on the left side of her brain, sending messages from the left mid parietal lobe down through the spiderweb of nerves to the fingers of her right hand. She couldn’t have stopped them if she tried. It was as if the cancer had a life of its own, which of course it did. It had moved from her right cheek to her lungs, and perhaps to her pancreas in the form of microscopic dots seeking a home, nesting there for years without doing any harm until they gained enough strength or vitality or life force to migrate through the bloodstream, past the blood-brain barrier that is supposed to protect the brain from almost every threat but metastatic cancer, to nestle in a place where the cancer could grow unimpeded without causing pain (the brain feels none) or, for some time, symptoms. Metastatic melanoma is, as oncologists often describe it, “a ticking time bomb” in the body. It bides its time, then years after you may have been told that the dermatological surgeon “got it all,” it explodes where you least expected it, far from the original site on the skin, inside the brain, for example. It can wait ten or eleven years or more, during which time you think you’re safe, having no symptoms, but given time a few stray cells are enough to kill you.
We tried not to talk about Margaret’s illness at dinner, although it took a conscious effort. As we were to discover, the tumor would soon become the proverbial “elephant in the room,” too big to ignore, more difficult still to pretend it isn’t there. Cancer not only takes over the body, it takes over your whole life if you let it. Margaret understood that, she had learned from my own brush with cancer the importance of trying to cling to one’s normal interests and routine for as long as possible. It was not a question of ignoring the disease or pretending it wasn’t happening, she was far too realistic for that, but she understood that the disease was the enemy, you had to prevent it from taking over your life to the exclusion of everything else for as long as you could.
When I had been recovering from cancer surgery at home twenty-two years ago and was still wearing a dressing gown to conceal the catheter and the bag attached to my leg, she made sure to invite for dinner friends from the city who would talk about politics, book publishing gossip, history, anything except what she called “cancer talk,” and now that she herself was faced with a far more serious and threatening problem than mine had been she was determined not to let the cancer become our only subject of conversation.
This was wisdom rather than escapism; we had learned it the hard way. With considerable effort we ate our crab cakes and talked about horses, movies, television, anything but what we both had on our mind.
The Cancer Treatment and Wellness Center at Northern Westchester Hospital in Mount Kisco, New York, is a separate two-story red-brick building with an entrance more like that of a hotel than a hospital. I had vaguely assumed that “Mount Kisco” was a geographical feature from the Old Testament like Mount Sinai, but in fact it was merely a poor transliteration of an Indian word for mud, a mistake made in about 1700. Mount Kisco today is a prosperous commercial center in Westchester surrounded by horse farms and big estates, something of a bridge linking expensive country homes to more modest suburban ones.
The two women at the admissions desk of the Cancer Treatment and Wellness Center showed exemplary patience as I filled out the forms—they smiled and made eye contact, and remembered our names, a very different experience from those who dealt with patients elsewhere from behind a glass window that they slammed shut as soon as they could. Here, the tone seemed friendly and informal, very unlike a hospital. I noticed that they each had their own pronunciation of Dr. de Lotbinière’s name, not surprisingly, and tended to refer to him for simplicity’s sake as “Dr. D.”
Once we were ushered inside, the center had a strangely soothing and cheerful look to it. There were big overstuffed armchairs and sofas, each with its own brightly patterned pillow, set around a large table with the latest magazines spread neatly on it, not the untidy piles of ancient, dog-eared copies of Reader’s Digest like those in most hospital waiting rooms. The colors were warm pastels, chosen no doubt to have a calming effect on patients and their family. There was a large aquarium full of brightly colored tropical fish and a long table with an urn of citrus-flavored water, hot water for tea and coffee, even a plate of cookies. In the background there was soothing music, rows of well-tended plants and flowers, the lighting was subdued, everything had clearly been selected with considerable care to reduce anxiety and create a sense of well-being. Here, there were no long rows of nervous or distressed patients sitting on uncomfortable hard plastic chairs against bright white walls waiting for their name to be called out—in fact there were only a few people here, seated comfortably in the big armchairs and looking about as relaxed as anyone can be in a cancer treatment center.
None of this tasteful décor seemed likely to altogether calm Margaret’s anxiety, but the surroundings held it to a sustainable level, there was nothing visible to alarm her, the background seemed hardly medical at all. The music was low and classical, and I was not surprised to read on the bulletin board that a harpist played here at certain times of the day. I recognized that all this had been carefully thought out, and as well that all the cookies and plants in the world could not alter the reality of what was concealed behind the polished wooden doors, but I could not help reflecting that there was a real and important statement being made here—there is no reason to treat those who have cancer as if they are army recruits in institutionalized settings that are only one step above a prison. Recognizing their need to be treated with care, dignity, and respect is the first step in dealing with their illness, even small touches can make the experience less distressing.
In keeping with the atmosphere of the place Dr. de Lotbinière himself appeared to greet us, rather than our being ushered into his office by his nurse or one of the receptionists. He was tall, well dressed, courteous, cheerful, even jovial, there was nothing forbidding about him at all. I could not help noticing that he wore a well-cut suit rather than a white doctor’s coat, and narrow, elegant, beautiful polished shoes, looking every inch like what an old Rosean should be. He charmed Margaret at once, treating her as if she were a guest to a party. I thought he might be about to kiss her hand—at school we had been expected to kiss the hand of the headmaster’s wife every evening as we filed out after dinner—but instead he gestured her toward the most comfortable chair. I gave him the disk of Margaret’s brain scan, and he turned to his right to study it. His computer was off to one side, so the three of us sat comfortably looking at each other, as if we were about to have tea. When he wanted us to look at something I stood up and looked over his left shoulder, while Margaret, who was closer, remained seated as he isolated a feature and enlarged it for us. His manner was calm and reassuring, unlike the previous neurosurgeon we had seen he was informative and low-key, and he succeeded at once in thawing Margaret. She had not even wanted to look at the scan the last time it had been shown to her, in fact she had kept her eyes firmly shut, but this time she looked at it attentively, and even asked a few questions. He answered them quietly, without drama, his description of the tumor not so very different from that of the radiologist’s report, although shaded a little more gently.
Of course, Margaret had not read that report, which was buried on my desk, so she was hearing about it in detail for the first time. Coming from Dr. D it did not appear to frighten her, she listened calmly, without any evidence of anxiety, her chin resting on her hand—he could hardly have had a more perfect “bedside manner,” the old-fashioned way of describing a doctor who knows how to talk to a patient, had he been a general practitioner on a house call telling her to take a couple of aspirin, spend a day or two in bed and take plenty of liquids, rather than a brain surgeon with the full range of modern science and surgery at his fingertips. No doubt he realized at once how much Margaret feared and hated the idea of becoming a patient, acted upon rather than acting, giving up control, handing over to him or anyone else with a stethoscope the life she had built for herself so carefully over the years. She had a natural reluctance to put that life in the hands of any doctor, even one so gentle and charming in manner, a reluctance intensified by a lifelong fear of the medical profession, but she was struggling to overcome it. She would henceforth call him “Dr. Alain” to avoid the difficulty of pronouncing his last name.
Why was he against her having a biopsy? she asked. He gave a gentle shrug. At this point it doesn’t matter what kind of tumor it is, he told her, what matters is to remove it at once. When that has been done, it will be biopsied, of course, but the important thing now was to remove it. There was no point in making two holes in the skull, one for a biopsy, another later on for surgery. In addition, there was always some danger that the biopsy might cause a hemorrhage as it pierced the tumor, so why run the risk? That made evident good sense to me, and apparently to Margaret too. There is, in fact, an old neurosurgeon’s adage, “It’s much more important to know where something is than what it is.” I had found this searching on the internet about neurosurgery, and clearly it still held true.
It was apparent from her questions that Margaret had reconciled herself to the surgery. She had decided to trust Dr. Alain, and as I well knew, once she made a decision she never looked back on it. How long would the surgery take? she wanted to know. At least four hours, maybe more. We must understand that this was major surgery—he firmly emphasized the word. Gently, he touched the left side of her head with his fingertips a couple of inches above the ear and indicated a sweeping crescent with his index finger. He would make an incision here, lift out a piece of the skull, then remove as much of the tumor as he could. Margaret did not flinch, she merely asked how much of her hair she would lose. Dr. Alain took this in his stride, he was a man of the world, he did not dismiss Margaret’s concern for her hair. He would merely have to remove a narrow strip of hair, he reassured her, indicating about an inch with his thumb and forefinger. She nodded. He had passed the first test.
The next would be harder, I guessed. Would she ever be able to do the things she loved, riding, taking long walks, dinner with friends? she asked. This was the nitty-gritty for Margaret, I knew that.
Unlike the previous neurosurgeon, Dr. Alain kept eye contact with his patient, he looked at Margaret steadily and with sympathy. The aim was to restore and preserve her quality of life, he replied. Coming from Dr. Alain, the words “quality of life” sounded more like a promise, however qualified, than a threat. There were risks associated with this kind of surgery, it would be foolish to deny it, he went on, there could be no guarantee, but he saw no reason why she should not eventually resume doing the things she loved.
He did not overburden Margaret with the physical details of the surgery he would perform; she did not want to know them, nor probably do most other patients facing brain surgery. She already guessed without being told that despite the precision and delicacy involved in performing a craniotomy and the resection of a brain tumor, it was still a bloody and challenging procedure. If you let your mind wander there, you only have to imagine the surgeon cutting through your scalp, drilling holes into your skull, sawing between them, removing a piece of it, then cutting into that portion of your brain where speech, right hand movement, and so much more of what is “yourself” are contained—what neurosurgeons call the “eloquent” portion of the brain. Margaret was consenting, whether she knew it or not, to let Dr. Alain perform surgery in the part of her brain that defined and controlled the very essence of who she was.
Of course, whenever a surgeon needs to operate you cannot help imagining what life will be like if things go wrong, leaving to one side the question of whether you survive, but with brain surgery you also have to wonder whether you will emerge from it as the person you were—not just whether you will be able to ride a horse, drive a car, cook dinner, or play Scrabble, but whether your memories, your feelings, your sense of self will be intact. What if some or all of that intricate web of knowledge, experience, character, personal tastes, and personality is lost in the process, who, what will you be? To Dr. Alain’s credit, he did not play down the risks, but he somehow managed to make it clear that he was on her side—not a threatening medical authority figure, but a friend. In these circumstances this was no mean achievement.
At home, while Margaret was asleep, I had watched some parts of a color videotape of a craniotomy performed by Dr. Brett Osborn, which was boldly, and as I soon learned accurately, marked with the warning, “This is not for the faint-hearted.” That was putting it mildly. Once the skull is opened, brain surgery is a delicate art—it must take nerves of steel and the fingers of a concert pianist to cut into the brain itself—but opening the skull resembles carpentry carried out with a high-speed drill in a torrent of blood, saline solution, and fine bone dust. Watching Dr. Osborn, a passionate weight lifter and motorcyclist, drill half-inch holes in the skull, saw between them to detach a piece of it, then lift it out to reveal the brain below was an amazing but gruesome experience for a layman, at any rate it was for me. Imagining this being done to someone you love (and keeping it to yourself) is harder still.
Having gained Margaret’s confidence, Dr. Alain skillfully gave us a brisk foretaste of the future. He would perform the surgery at Westchester Medical Center University Hospital (henceforth referred to as WMC), in Valhalla, New York, which was just over an hour away from our farm by car. After surgery Margaret would have to spend a few days—it was impossible to predict how many—in the Neurological Intensive Care Unit. Margaret wanted to know how long it would be before she could go home. Dr. Alain patiently deflected this question. It was impossible to say for sure. She might benefit from a period of rehabilitation, a transition toward her return home. I could see from Margaret’s expression that this was going to be a sticking point, and so could Dr. Alain, who waved it away—we would have to see how much progress Margaret made in the Neuro-ICU. Once she was home, she would need some level of outpatient rehabilitation therapy, either at home or at a local hospital, and once she had sufficiently recovered he would administer “Gamma Knife radiation,” a very precisely targeted radiation intended to kill any remaining cancer cells in the “bed” of the tumor, that is to say the place in the brain from which the tumor had been removed.
The word knife caused Margaret to frown momentarily, but in fact no knife was involved, he explained, it was a painless and simple process, she should have no anxiety about it. He moved from Margaret’s brain scan on his computer screen to his calendar. He would be able to perform the surgery in two weeks’ time, on Wednesday, April 20. I had hoped it would be sooner, but Wednesday was the day on which he operated, and his schedule was already full for next week. I expected Margaret to object or to ask a few more questions, but instead she just looked intently at Dr. Alain and said, “Wednesday is good for me.”
And that was that. I knew Margaret well enough to tell that she had made up her mind, and nothing would change it—nothing ever changed her mind once she had made it up. Whatever her misgivings, she had accepted that she was going to have the surgery, and she had decided on Dr. Alain, there would be no doctor shopping, no hesitation, no second thoughts. Once Margaret had decided to take a fence she rode full-tilt at it, without fear, without doubt. Her motto had always been that of the great American horseman Harry deLeyer (rider of the famous show jumper Snowman): “Throw your heart over the fence and the horse will follow.”
Neither of us had any idea how high that fence would be.