Passing

by Michael Korda

  The one thing worse than dying is wanting to die, reaching that point at which pain, or anxiety, or physical decline, or all three, become so terrible that death seems preferable. Would Margaret ever reach this point, I wondered, and what would I do if she did? Christopher, my son by my previous marriage, had been a teenage evangelist of euthanasia, and cofounder of the Church of Euthanasia, although its purpose was to preach saving the planet by eliminating human overpopulation rather than relieving end-of-life pain. The publicity surrounding this movement and the means by which Chris and his followers promoted it had given his mother Casey, myself, and Margaret a good deal of grief way back in the late 1990s, and soured me on the whole subject of euthanasia, however well-intentioned. Besides, euthanasia is illegal in New York State.

  I began to read up on terminal illness, starting with Atul Gawande’s Being Mortal and moving on to Sherwin B. Nuland’s How We Die, guiltily removing the dust jackets so Margaret wouldn’t notice what I was reading, as if they were pornography. Both these books were brilliant, bracing, and informative rather than depressing, although it did not escape my attention that Dr. Gawande had not found it easier to make his father, also a doctor, face what was happening to him than the rest of us would. Dr. Gawande was afraid of telling his father, his father was afraid of dying and did not want to suffer—pretty much what any of us would feel in the circumstances. Nor did the fact that they were both doctors alleviate the father’s suffering in the end: the medical Juggernaut moved on mercilessly, prolonging Dr. Gawande’s life well after he wanted it ended. I consoled myself with the thought that it would surely take a considerable amount of time before we reached that point, if we ever did. After all, Margaret was about to start radiation treatment, and following that there would surely be further treatments. There would be plenty of time to think about all this when Dr. Choi had completed her work, six sessions of radiation spread over two weeks.

  Looking back on it, I realize that my mind was deeply divided. On the one hand, I was thinking about what we needed to do on a practical level if, or perhaps when, Margaret’s illness got worse; on the other, I was assuming that somewhere along the way something would work, giving her more time—that the radiation might help despite Alain’s caution, that Margaret might in the end go to see Dr. Kluger or someone like her . . .

  That in fact she had only four more months to live, and that everything she feared most would happen to her, was not yet apparent to me.

  10.

  Ways must be found to de-medicalize the final weeks or days, to nurture the dying and those who love them, and by this means to nurture ourselves.

  —SHERWIN B. NULAND,

  How We Die

  MARGARET LOVED EVERY bit of Christmas: sending Christmas cards, displaying the ones we received, putting up the tree, decking the horses’ stalls with Christmas wreaths, it was the holiday she enjoyed most, but in 2016, as this memo of December 8 to me from my assistant Dawn demonstrates, the Christmas spirit was notable by its absence, replaced by her radiation treatment:

  Tuesday, 12/13 imaging, sometime in the afternoon

  Wednesday 12/14, first radiation session

  Friday 12/16, radiation

  Monday 12/19 radiation

  Wednesday 12/21, radiation

  Friday, 12/23, radiation

  Each radiation session will be in the A. M.

  The first session would not prove to be particularly stressful, it entailed making an exact mask of Margaret’s face so as to position her head correctly for the radiation. I found the technology of it all interesting, even soothing, but cutting-edge technology was not high among Margaret’s interests. I could not help thinking that molding the plastic mask was a process strangely similar to that of making the death mask in the eighteenth and nineteenth centuries, when it was the custom to call someone in immediately after anybody of wealth or importance had died to take a plaster cast of the face from which a bronze impression could later be made, but I sensibly kept this gruesome thought to myself.

  At any rate, there would be nothing hard and difficult about the radiation itself except for the amount of time it took to drive down to Northern Westchester Hospital and back. Perhaps inevitably, both Margaret and I developed what were perhaps exaggerated hopes for the radiation; with cancer one grasps naturally at straws, every new treatment seems like a potential lifesaver until it isn’t. The fact that some part of my mind was operating more rationally is borne out by my email from the hospital to Dan Scharff, who looks after our house, asking him “to set up an alarm in Margaret’s bathroom, in reach of the tub, that would sound and/or flash in the kitchen and in my office.” Clearly, I was anticipating some substantial further decline in Margaret’s ability to look after herself—although even then I was being overoptimistic, because there would very soon be no possibility of leaving Margaret alone in the tub without my presence.

  The first radiation session produced an unfortunate hiccup, since it was canceled at the last moment, which produced a moment of extreme anxiety for Margaret—given that she had placed such hope as she had in the radiation, only to have it postponed when we were already in the car and on the way. I swiftly communicated with Alain, who was as always patient and responsive. The treatment plan, he explained, had to be “modified extensively” because of Margaret’s prior Gamma Knife radiation and the fact that she now had two lesions instead of one, and Dr. Choi would be ready to begin it tomorrow. Margaret simmered down, but it did nothing to improve her feelings about Dr. Choi. The next day also proved disappointing and stressful. We spent the entire day waiting beside the tropical fish in the Cancer Treatment and Wellness Center while technicians came and went trying to repair the radiation equipment, which had broken down, and we were finally sent home late in the day with the promise that it would be working again in time for the session on Friday. The decorations in the waiting room did not produce much in the way of Christmas spirit under the circumstances.

  The next forty-eight hours were understandably testy—Margaret felt like a drowning person toward whom someone had offered a helping hand, only to draw it away at the last moment. One of our friends emailed to ask after Pablo, who had worked in the barn for twelve years and was going home to Mexico (not perhaps perfect timing on his part), causing Margaret to erupt in indignation and dictate a reply that I sent under my name. “[Her] first concern . . . is not that Pablo is leaving, but that [the] malignant, metastatic brain tumor has returned, in addition to another one appearing in a critical place in the brain, all extremely bad news,” and adding on my own: “What she needs at this moment in her life is concern, love, caring and physical/emotional support . . . Hugs, care, love, tears should go to her, not to Pablo . . . What we need now is a miracle.”

  We did not get one. There is no handbook on how to communicate with someone suffering from a terminal illness. I came to realize that however close they may be, most friends don’t find it easy to say or write the right thing. There is a balance between chitchat about one’s own life intended to distract the patient and heavy-breathing concern that simply makes the patient even more depressed or anxious, hard as it is to strike it. As Margaret lost weight—she was already “thin as a stick,” I wrote to a friend—she increasingly did not want visitors. She made an exception for one of her friends, a passionate cat lover and fellow horse person, who begged to see her, then sat down for tea and talked nonstop for one hour about her cats without once mentioning Margaret’s illness. You could see in her eyes that she knew she was getting it wrong, but she was unable to stop—she could not bear to ask about Margaret’s cancer, or the treatment, or Margaret’s feelings and fears, in the end she gave her a quick hug and kiss and left in tears without having reached out to Margaret in any personal way. It would have been funny had it not been so sad. Margaret simply sighed, and said, “I don’t want to go through that again.” Nor did I. I thought to myself, how difficult can it be to ask Margaret how she feels, how she is dealing with it all, and whether there�
�s anything you can do to help? And then perhaps talk a bit about good times they have shared?

  The truth is that we don’t want to ask about what we don’t want to know. Terminal illness scares people, it’s almost as if the patient were contagious. Particularly when somebody as physically strong and active as Margaret gets sick, really sick, people think, If it could happen to her it could happen to me, a thought nobody wants to cling to. Margaret might as well have hung the Sword of Damocles above her guest’s head at tea.

  The radiation session on Friday finally went smoothly enough, there was no drama and no immediate aftereffect, in fact the treatments all proceeded as planned on schedule. They made Margaret noticeably more tired and she was more often unable to remember things. We had been warned about that, and at the same time her ability to use the fingers of her right hand deteriorated further. This was enough to make me ask Colleen quietly, without spooking Margaret, whether we could find a good home-care service in the neighborhood that might be covered by Medicare.

  As Christmas approached, Margaret started losing her hair—we had been warned of that too, but it was still a shock when it began to happen. It’s one thing to think about it, and another when great tufts of hair fall into the sink every time you comb or brush it, or tufts cling to the pillow when you wake up in the morning.

  For as long as I had known her, Margaret had always done Christmas on a grand scale, sending countless cards with long handwritten notes, supervising Christmas trees, wreaths, and decorations, getting everything “just so,” even if it was only for the two of us. But now she could no longer write, or hang up cards, or arrange Christmas ornaments without breaking them, and her spirits plummeted. She did her best to carry on, but each present she tried to wrap was a challenge, and few of them came out the way she wanted them to. Alain halved her dose of steroids, which helped a bit, but it was a grim Christmas, waiting for the next MRI in the hope it would show that the growth of the tumors had been slowed, and we hardly even bothered to celebrate the new year. Wishing each other a Happy New Year felt false and uncomfortable, but we did it anyway, without conviction.

  I spent the first week of 2017 talking to Margaret’s hairdresser Tom about where the best place was to get a wig—I thought nothing would raise Margaret’s spirits more than a good wig, and he recommended that we meet at Barry Hendrickson’s Bitz-n-Pieces salon at Columbus Circle, giving me a whole new subject to read up on; I soon knew more about wigs than I had ever wanted to. In case Margaret wasn’t up to going to the city Colleen pursued a separate search closer to home, but in the end a snood turned out to be the best temporary solution. Friends FedExed hoods, caps, and snoods of every description, even one woven out of bamboo fiber, but a simple plain black one seemed to work best. Very soon, however, the rapid decline in Margaret’s condition unexpectedly eclipsed the question of what to do about her hair.

  A more pressing concern to me was that Margaret had no doctor locally in case of a crisis. I worried about what we would do if something went seriously wrong over a weekend or at night—a seizure, for instance. Her internist Dr. Adam was in New York City; Alain was in Westchester, and in any case he was a neurosurgeon, among the most specialized of specialists; Dr. Tom was an ob-gyn on the verge of retiring; and our neighbor Dr. Vinnie Jr. was a dermatologist. Who would we turn to in case of a sudden problem? Vinnie, at my request, had suggested an oncologist in his group, Dr. Jason Rubin, but Margaret did not want to see another doctor and was still deeply resistant to the idea of consulting an oncologist. I was concerned enough to send an email to Alain shortly after New Year: “Since [Margaret] completed the five sessions of radiation she has been exhausted (which Dr. Choi and yourself predicted), but she also has had a return of memory problems, speech problem, and difficulty with using her right hand. Is there any chance that these will diminish in time as the radiation wears off? I think she should also have an oncologist in Poughkeepsie, someone reasonably close at hand in case of further problems. Margaret does not want to do it, but it seems to me that it will be necessary at some point . . .”

  Alain replied cautiously that there was no guarantee the radiation would lead to an improvement of Margaret’s speech, memory, or finger problems, but he certainly thought it was a good idea for Margaret to have a local oncologist, even if she decided “to let things be and not pursue any more treatments.” He added that it was normally the oncologist who coordinates the care of a patient with a cancer diagnosis, “including end-of-life care, as the latter can be the most difficult challenge both a patient and family face.”

  My eye was naturally caught by the phrase “end-of-life care,” and I realized I had not been looking at the matter in the right perspective. If we were going to face the challenge of “end-of-life care,” there were a lot of decisions that had to be made, and Margaret would have to be involved, however little she wanted to be. Mentally, we were still waiting to learn whether or not the radiation treatments had halted or slowed down the growth of the tumors, but Alain’s message alerted me to the possibility that they might fail altogether, in which case Margaret would be caught in a downward spiral, there was no telling for how long. Dr. Choi had told us that Margaret’s next MRI would be in six to eight weeks, somewhere between the beginning and the last week of February. In the meantime, we had an appointment to see Alain and Dr. Choi on January 12 to discuss the situation.

  Margaret’s symptoms were now worsening and multiplying at a rapid rate. She complained that her skin was becoming very delicate, “tears easily, heals very slowly,” while her speech was increasingly garbled and her appetite dropped to zero. I reported all this to Alain, adding: “She talks of killing herself, and asks what she has to live for if she is not going to improve beyond this . . . I thought you should know all this before our consultation with you both on Thursday . . . Sorry to burden you with this, but I do not feel I can or should leave you unprepared. She is in a very bad way, frankly.”

  Alain replied the same day, reminding me ever so gently that he had recommended surgery before radiation, “as this would have had the advantage of reducing the volume of tissue [which] needed to be irradiated,” and suggesting that Margaret have an MRI immediately before our consultation on January 12.

  When I told Margaret this, she said quite calmly, “This is all going in the wrong direction, isn’t it?” Perhaps because I was finishing Alone, my book about Dunkirk, I was reminded of the famous David Low cartoon in which a lifeboat is sinking with everybody at the stern, the little countries baling desperately, while John Bull and Uncle Sam sit at the bow and one says to the other, “Phew! That’s a nasty leak. Thank goodness it’s not at our end of the boat.” I felt that we too were bailing as hard as we could as our boat went down, and that nothing could stop it from sinking. We had both expected a brief, if nervous, pause of six to eight weeks before the next MRI, perhaps followed if we’re lucky by some relatively good news, but now the MRI was going to take place less than three weeks after Margaret’s radiation treatment had ended, and it did not seem likely to produce any result that we wanted to hear.

  “I should have had the surgery when he recommended it, shouldn’t I?” Margaret was wistful, not angry. Except for the hair, she had never looked more beautiful.

  “Yes, probably,” I said. Choosing to have radiation instead of another round of brain surgery had been a mistake, that was already becoming clear. I felt, already, certain guilt at having let her make that choice, but I also understood her reluctance to go through the same ordeal again. On the other hand, just doing nothing seemed like giving up, and as Alain had made it clear the end was not likely to be easy or painless. Organs would break down, systems would collapse, death would probably take place in a hospital, surrounded by monitors, tubes, and wires. For the moment, Margaret was still riding, driving, grooming her cats, activities that soothed her nerves. So long as she could do all that, I thought she should continue to take whatever treatment was on offer to prolong her life.

  That wa
s probably a mistake, as well.

  There was a certain consternation among the friendly, familiar faces at the radiation department of Northern Westchester Hospital when Margaret turned up for an MRI only three weeks after the previous one. Even the receptionist knew how to interpret that; there was no diminution of the cheerfulness which is de rigeur for people in the radiation department, but there was now a hint of sympathy and concern as well—an urgent MRI so soon after the last one could hardly be good news.

  The consultation with Alain and Dr. Choi afterward went more quietly than I had anticipated. Dr. Choi sensibly kept a fairly low profile, and Alain, in his firm but tactful way, maintained control—in any event, the results of the “urgent MRI” were so awful that they prevented any outburst from Margaret about the aftereffects of the radiation, which had not only cost her her hair, but had no effect at all on the two tumors. Both of them had grown in size, in addition to which there were now three new smaller metastases in the brain. “The only reasonable option at present,” Alain wrote to Dr. Adam on the same day, summarizing what he told us, “is the one I initially presented to her on December 1, 2016: namely, a surgical intervention to debulk both tumors.” This would be preceded by another Gamma Knife stereotactic radiosurgical intervention to treat the three new metastases. “It is evident,” Alain added, “that she will also need to have an oncologist for frank discussion with regard to systemic therapy, something which she has been avoiding all along.”

  Strangely enough—a tribute to Alain’s persuasive power and tact—Margaret agreed to all this without argument. He made it clear to her that the alternative was a fairly rapid death, not necessarily a pleasant or easy one. He carefully avoided any temptation to say that he had been right and she had been wrong, or that she should have agreed to the surgery on December 1. At the same time, she put to one side her resentment over the side effects of the radiation. She would have the Gamma Knife radiation on January 17 and undergo the surgery for the two larger tumors, one old, one new, on January 25.