Not only that, but much to my surprise she finally agreed to see Dr. Jason Rubin, the oncologist Dr. Vinnie had suggested in Poughkeepsie. It was a graceful surrender on Margaret’s part, although by that time it may have been too late to change anything. Then again, the difference between having the surgery in mid-December and having it on January 25 was only a matter of five weeks, which did not seem all that significant—what we failed to ask, but should have, is what the rate of growth of the tumors was. The cancer was, as we would soon discover, moving faster than we were, and with the failure of the radiation there was nothing to slow it down.
Margaret’s decision was partly based on her trust in Alain—there was a certain sympathie between them, they were both stylish, attractive, and well-traveled, and most important of all Alain never lectured her. The increasing severity of Margaret’s condition helped to make up her mind too: her gait was progressively more unsteady; she was taking smaller steps, she needed her cane now, it was no longer a prop or for difficult ground underfoot; going up and down stairs was becoming an ordeal. Her world was narrowing down day by day. She had always hated it when the cold and the short days of midwinter forced her indoors, she always preferred being outdoors walking or riding, so not surprisingly she was deeply depressed. Alain had thrown her what might be a lifeline, and to my surprise and his, she took it. I emailed Dr. Vinnie from the car on the way home and asked him if he could get an appointment with Dr. Rubin as soon as possible, before Margaret changed her mind. He replied that he would. I emailed Dawn: “Tomorrow morning Dr. Jason Rubin’s secretary will call and set an appointment for Margaret for Monday at some time . . . Dr. Beltrani moved heaven and earth to get her a Monday appointment, whatever she has, take it!” This was a Thursday, and securing an appointment with a busy oncologist for Monday was above and beyond the call of friendship.
Not for the last time, I was moved by the way busy people responded to a crisis. Seen from the patient’s point of view (and from that of his or her spouse) the medical world can seem like a baffling fortress, difficult to approach and remote, particularly in a major hospital, but again and again I found that, given a chance, people were eager to help and remarkably sympathetic.
The next day I thanked Alain, and he replied, “I would not have pushed for it if I did not feel it would be worth the while. Obviously, there are no guarantees, but to throw in the towel at this point would be sad.”
This was exactly what I felt. I too did not want to “throw in the towel.”
I spent the next few days, with Colleen’s guidance, searching for a place where Margaret could recuperate after the surgery. At first I was disappointed: the really nice places, like the grandly named Noble Horizons, in Salisbury, Connecticut, or Woodland Pond in New Paltz, New York, turned out to be retirement facilities, not for short-term rehabilitation—some of them looked so good that I was half tempted to move us both there on the spot. Who would not want an indoor heated pool and catered gourmet meals? However, I quickly realized that short-term rehabilitation was a whole different thing from assisted living. Colleen came up with the place that seemed best, the Paul Rosenthal Rehabilitation Center at Northern Dutchess Hospital, in Rhinebeck, a new, small, ten-bed facility in which each patient had a private room and bathroom. Colleen and I paid it a quick visit. Rhinebeck, more of a “destination town” with interesting shops and restaurants than Pleasant Valley, was only twenty minutes away, and we were both impressed. The rooms were big and airy, each with a private bathroom, all ten built around the horseshoe-shaped nurses’ station, so there would be none of that endless ringing for a faraway and invisible nurse—if your door was open you could see them, and they could see you. There was a well-equipped gym, a dining room where those patients who were ambulatory could eat, and above all everybody we met was cheerful, willing to chat, and knowledgeable. Looking out of the window at the snow-covered fields, I said to Colleen that I would be happy to move in here myself, if I could bring a couple of books and a bottle of bourbon with me. It seemed clean, quiet, well organized, peaceful, even serene. The only problem was that because it was small it was often full, and we couldn’t give them an exact date when Margaret would be discharged from WMC.
The visit to Dr. Rubin went off without any difficulty. He was attentive, sympathetic, and frank: Margaret should have a PET scan as soon as possible, after the surgery the tumors would be biopsied to see if there was a BRAF mutation, since if there was, there existed sophisticated treatments for melanoma despite the fairly advanced stage of Margaret’s disease. He would be happy to take over Margaret’s care after the surgery. He too thought Margaret should see Dr. Kluger, but understood that the New York Times front-page article made it unlikely that she would agree. He seemed like a very competent, reasonable man, and I felt a certain relief to have a doctor only fifteen minutes away as opposed to one or two hours away, just in case.
In case of what, I did not know. Both Alain and Dr. Rubin mentioned the possibility of a seizure, which sounded frightening to me once I had read up on it—there is nothing like reading about a medical subject on Wikipedia to scare the wits out of you. Would I have to put something between Margaret’s teeth to prevent her from biting her tongue? With a sigh, I put it on my list of things to ask about.
As usual, the days before Margaret’s surgery filled up inexorably. She needed a new medical clearance, happily arranged locally between Drs. de Lotbinière and Rubin so she did not have to go all the way down to the city and back. She also needed another blood test, and another session with Colleen to decide what she needed to pack and what I needed to buy for her. In my email to Colleen I added “. . . under a surface layer of English calm I am head over heels with anxiety,” which pretty well describes it. As for Margaret, she had the kind of calm that is supposed to come over people who are about to face a firing squad, a blend of fatalism and shock. My notes from that meeting read, in part: “Chapsticks!!!! Face and body cream, toothbrush, toothpaste, toothpicks, deodorant, mouthwash, Kleenex, 2 handkerchiefs, reading glasses, Pond’s Cold Cream (white, BLUE lid), Ensure? No medicines, jewelry, credit cards, cellphone.” Margaret was never wholly confident of my ability to find exactly what she wanted at CVS, hence the description of the cold cream I was to look for. She had grown used to drinking a couple of bottles of Ensure a day, a diet and protein milkshake of which she liked the vanilla and chocolate flavors and hated the strawberry one. I thought she would probably get as much of what she liked as she wanted at WMC, but it never hurts to take what you like—a supply of Ensure was to become so much a part of our lives over the next three months that to this day I shudder every time I see it on a shelf at the supermarket or CVS.
I emailed Alain to tell him that Margaret’s spirits were sinking very low as the date for her surgery approached, and he replied, “Nothing in life seems sufficient to prepare one for the pain of seeing a loved one suffer.” We had been exchanging messages about dukkha, the Buddhist concept of suffering as one of the Four Noble Truths of existence, a reminder that Roseans Alain and I had a relationship that went beyond the purely medical.
Margaret and I had to get up at four in the morning to be at WMC in time for her presurgical MRI, the beginning of a long, cold, bleak day, in which I sat next to her bed holding her hand and talking about trivia until almost four o’clock in the afternoon—there was some delay about preparing the operating room. When I kissed her forehead, it was stone-cold. I saw her wheeled out on a gurney. I would not see her again until eight o’clock that night.
11.
THE SURGICAL PROCEDURE was in theory much the same as the previous one, except that it would involve two craniotomies instead of just one. Alain did the new one first, making an incision over the right parietal brain metastasis and removing a piece of the skull. “The discoloration immediately visible on the surface of the brain was evident . . . The majority of the tumor was noted to be necrotic,” he noted later. In layman’s terms, the tumor was enlarging fast enough to outgrow its own
blood supply, and a portion of it therefore consisted of dead cells. Specimens were then taken for analysis, the tumor removed, “the cavity [in the brain] created by the melanoma” irrigated and “a cranioplasty performed,” replacing the bone flap and securing it with “titanium burr hole covers and plates.” Alain then turned his attention to the left frontoparietal region, from which he had debulked the tumor in April 2016 that had now returned. The scalp was incised and peeled back, the bone flap removed, the tumor immediately identified and exenterated by suction, the bone flap replaced, and a cranioplasty performed.
Brain surgery is a curious mixture of delicacy and brute force. The brain itself is the most fragile of human organs, yet opening and closing the skull requires a combination of skills somewhere between watchmaking and carpentry, involving drills, saws, burs, screwdrivers, the equivalent of pry bars, and the like, but also tiny titanium screws, latches, and pieces of mesh.
The surgery would take more than four hours—it was eight p.m. before I was able to see Margaret in her room, surrounded by high-tech equipment and looking tiny, sad, and frail, her hands carefully tied down to the bed so that she could not pluck at the tubes and wires around her. Her eyes were closed, but she was conscious and her lips were moving. I leaned over to hear what she was saying, but the only words I could distinguish were, “Why me?”
There was no good answer to that. Before her speech had become difficult or impossible to understand, Margaret would occasionally ask me if I thought she was being punished, and if so, for what? I said I didn’t think so, that pain and suffering aren’t dealt out according to some system of merit, they simply happen, but although Margaret disliked all forms of religion—no doubt the legacy of those years in a convent school, baths in cold water and discipline administered by the nuns with a ruler—she nevertheless wanted to believe that there was some orderly system, that somebody was keeping score. An accidental explanation, that things just happen, that nobody is in charge, did not satisfy her, nor did a cause-and-effect explanation—after all, plenty of people spent just as much time in the sun as Margaret had, life was full of women in the 1960s and 1970s who associated a year-round tan with glamour, yet most of them did not end up in a hospital bed after two brain surgeries and two different kinds of radiation.
“Why me?” is a good question, but not an answerable one, and I sensibly held her hand instead of trying. Her eyelids occasionally fluttered, she knew I was there, and sometimes being there is the most you can do, all that is needed. When I left for the night I emailed Dawn, “Margaret is in her room, plugged into wires and tubes, very miserable . . . very restless. Terrible . . . Dr. DL removed (or “debulked”) two tumors, but thinks Margaret will need further treatment, Gamma Knife radiation, possibly some form of chemo. Path forward not going to be easy.”
The next day made that clear. Margaret’s restlessness had increased, her speech had improved slightly, but she was in a state of extreme high anxiety about her horses and cats, all of which were of course being looked after perfectly well. I emailed a reply to Megan’s message asking how Margaret was: “Today very difficult, she’s very tired and distracted about cats, and how much they are being fed. I said Tiz Whiz [the barn cat] doing fine, but she wanted to know how much [she had eaten], of what, and what happens if we run out of it.” It did no good for me to assure Margaret that we had an ample supply of Fancy Feast Marinated Tuna Morsels, or that in the unlikely event we ran out of it Megan could pick up more at the supermarket; she wanted an exact count of the number of cans we had left. Margaret passed the day hyperfocusing on the care of her animals while I soothed and reassured her as much as I could, to no avail. At the end of the day I emailed our friend Linda Fountain, “Not a good day, speech still very difficult, mind distracted, but she did eat (with my help) half a tuna sandwich cut into little pieces . . . In Neuro-ICU she has her own nurse 24 hours a day, which helps. I have put social worker here in touch with Northern Dutchess Hospital Acute Care, so hopefully she can go to Paul Rosenthal Rehabilitation Center by ambulance on discharge. One step at a time.”
I was beginning to feel the effects of pressure, Margaret’s anxiety level was hard to deal with—it was not her, I told myself, it was the disease, the surgery, the swelling of the brain as it reacted to what had been done to it; but still, after a couple of hours of repeating that she should not be worrying, that we had plenty of cat food (or hay, or whatever), it felt like criticism, and by seven p.m., when the Neuro-ICU nurse shooed me out despite Margaret’s agonizing pleas for me to stay, I had to sit down outside the hospital in the cold for a few minutes of deep breathing before the long drive home, where I would arrive around nine o’clock, pour myself a glass of bourbon, feed the cats, then warm up my dinner, knowing I would have to do it all over again the next day. Do not mistake me, I do not compare any of that to what Margaret was going through, but the “caregiver,” to use a favorite term in the kind of leaflets hospitals pass out, has his or her own pressures to deal with, among them guilt (Why her and not me?), fear, fatigue, and occasionally anger, which of course adds to the guilt.
Colleen’s big, cheerful husband Ray Greco owns the Corner Deli only a mile or so away from us, and always has on hand a Reese’s Peanut Butter and chocolate chip cookie that Margaret particularly liked, so Colleen and her daughter Megan made sure I had a daily supply of them to bring down to WMC, as well as meatballs to eat when I got home. When all else failed I would break the cookie into tiny pieces and feed it to her a bit at a time, washed down slowly with a bottle of chocolate Ensure. She ate more of that than the hospital food, but it was still not much.
Two days after the surgery I was able to tell Alain, “Margaret seems slightly better today than yesterday . . . Yesterday she was saying she wished she was dead, but a bit more upbeat today. Physical therapist got her up and walking a bit—he was very good, remembered her from last time.” This was not so surprising—Margaret’s physical therapists always remembered her, she excelled at the exercises and loved doing them. It was the one part of the process of recovery and rehabilitation that she looked forward to.
Alain replied, “Saw Margaret this morning, sleeping like an angel, so I did not wake her! MRI fine, no surprises. Discharge M/Tu still on.” Margaret was convinced that the sooner she was discharged from WMC, the sooner she would get better. She did not like her nurses as much as she had liked the ones on her previous stay in the Neuro-ICU, and, far from being a restful place in which to recover, this time it gave the impression of a busy train station, bells constantly ringing, people waking her up the moment she fell asleep. Despite all the medications and every effort on my part, her anxiety and irritability spiked. Ready or not, she wanted out, and longed for her departure. Unfortunately, despite all the arrangements for her to be transferred on Monday, January 30, there was a last-minute glitch. Northern Dutchess didn’t have a bed for her yet, so she had to stay until Tuesday. “Let’s hope everything will be smooth sailing for tomorrow,” Alain wrote, but that too turned out to be more difficult than anticipated.
“Long, bad day here,” I wrote Linda, “Margaret did NOT go to Rhinebeck Rehabilitation this morning, at the last minute they didn’t have a bed free, so she’s stuck [here], exhausted, stick-thin, depressed and anxious, all hair gone, keeps saying that she wishes she were dead . . . I understand that, but I am hoping we will get her to Rhinebeck by ambulance tomorrow, and that we will have a chance [there] to reconnect her to life.”
The next morning nature intervened with a sudden, blinding blizzard. I was so busy dealing with all the paperwork needed for Margaret’s discharge that I did not notice it until we got her gurney down to the ambulance loading dock. There was a thick layer of snow everywhere, the parking lot was almost empty, and nothing seemed to be moving on the roads. It was snowing fiercely. The crew of the ambulance I had hired was looking skeptical. The distance between WMC and Rhinebeck is about seventy-five miles, an hour-and-a-half drive in good weather. It was not good weather. “This don
’t look good,” the driver of the ambulance said. “And it’s worse farther north,” his partner added. “Going to be a hell of a storm. Taconic Parkway might be closed any minute.”
I looked at Margaret lying on the gurney behind the glass doors. She was covered in blankets and her own coat, her head swathed in bandages as if she were wearing a turban, with only her small, white face showing. I could tell from her eyes that what she was saying, or at least thinking, was: Get me out of here!
There was a bed waiting for her right now in Rhinebeck. I sighed. “Guys,” I said, “we have to get her to Northern Dutchess. Please.” They stared at the snow. Visibility was near-zero, strong winds blew the snow in our faces, stinging like hail. I could see they both thought I was crazy.
“What if they close the Taconic on us?” the driver asked.
“That’s what you’ve got flashing lights and a siren for, surely,” I said, more sharply than I had intended.
“That’s for an emergency,” he said.
“You don’t understand, this is an emergency.” I paused. “I’ll tell you what, I have a friend who’s a cop, I’ll give him a call and he may be able to help. On top of that, one hundred dollars each when we get her to Northern Dutchess. Is that a deal?”
They looked at each other and shrugged. “Let’s load her up,” the driver said. While they slid Margaret and all her gear into the ambulance and secured her, I dialed my friend on his personal cell phone. He was a shooting buddy; when he was doing K-9 training Margaret had always allowed him to work his dog on our land. By luck I got him on patrol and explained the problem. They were right, he said, the Taconic was about to be shut down tight as a drum, but an ambulance would probably get away with it, and anyway he would swing down and meet us halfway and escort us in.
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