This long piece about Eve’s cancer and final illness has been written over a period of five years, mostly on days that were on or near to Eve’s birthday, our wedding anniversary, or the day of her death. These were days that I wanted to reserve for reflections about our life together, and writing was a way of helping to focus my thoughts. Also, in the first few years after Eve’s death, my recollections about her were almost compulsively focused on the time of her illness and death, and it seemed to me that writing down these recollections might be a way, by giving them a more permanent form, to allow my thoughts to move on to earlier, healthier times. This effort, as well perhaps as other influences, has been largely successful, so that gradually I have become increasingly willing to see this project done.
The writing has not followed the chronological progress of Eve’s cancer. I wrote first, and at greatest length, about the time of Eve’s final illness. That writing had a greater urgency for me during the first year or two after Eve’s death, and my recollections then were more detailed than in recent years, during which both my urgency and my memories have gradually been fading. For the most part I have written from memory, but I have made some use of various documents to assist in my recollection of specific facts. I have relied on such assistance most extensively in writing about the last several years leading up to Eve’s final illness, during which her treatments and their complications became more numerous and the sequence of events more tangled, making it difficult for me to remember them clearly. Some of what I have written is, and can be, known only to myself and so of necessity is, however imperfect it may be, definitive. But much of the factual detail that I give could be checked against other sources; I have no doubt that many errors of detail or understanding would be found, as well as many places where much more extensive information could be given. Eve’s archives contain several boxes of documents that could contribute to such an effort.
During the first few years of this project, I was writing entirely for myself, with no intention of ever showing it to anyone else. Even now, it is primarily for myself that I am writing. But gradually I have realized that I would include this writing in Eve’s archive. If the archive is preserved, as I hope that it will be, then this will eventually be available to anyone who wishes to read it. I expect, though, that the length and specificity of this narrative will sustain the interest of no more than a few readers, and I beg that others will pardon me for writing for myself, and not for them.
H. A. Sedgwick
New York City
August 24, 2014
Part I The bottom drops out
In the fall of 1990, Eve was flourishing. She had moved to Duke in the fall of 1988. She had a distinguished chair, a good salary, a moderate teaching load, close friends among the faculty and graduate students, and her own house, shared with her new dear friend Michael Moon, to entertain them in.
It was the first time that Eve and I had not been strapped for cash. We had no savings at all when Eve moved to Duke, and so Eve had to take a short-term loan from Duke for the down payment on her house. Even with her higher salary, paying off that loan, along with all her other expenses, left Eve with about fifteen thousand dollars of increasing debt after her first two years at Duke. In mid-1990, however, I had inherited half the proceeds from the sale of my father’s house; even after paying off our debts, we had some savings.
Eve was becoming well known. Between Men had been out for several years and Epistemology of the Closet was in press. Because of her writing and because of the prominence of the English department that Stanley Fish was creating at Duke, she was receiving national attention and was speaking frequently at colleges around the country.
Eve was also increasingly active politically, compelled by the AIDS crisis and the appalling response to it. This response was especially salient in North Carolina, where the hateful Jesse Helms continued to be the dominant political voice. Engaged at a national level through her writing, her speaking, and her increasing participation in the governance structure of the Modern Language Association, Eve was also engaged locally, joining with some of her students in the activities of the local branch of ACT-UP.
Eve seemed at last to have a position commensurate with her talents and her energies, to have the freedom and resources to pursue the goals of greatest importance to her, and to fully appreciate — and be making the most of — these opportunities. She was forty years old, apparently with her most productive period — possibly decades long — still ahead of her. What is so shocking to me, looking back, is how very brief — just a few months — this period was for Eve, and for me.
I decided that I would take a six-month sabbatical, spending the fall quarter of 1990 in Durham with Eve. I had a writing project for that time, but my main motive for being in Durham was to have the time to spend with Eve, to help with getting settled in the new house, to get acquainted with the place, and to get to know Eve’s new friends and her life with them. After almost twenty years in a commuting relationship, these few months of living together were very special.
For most of the second half of my sabbatical, beginning right at the turn of the year, I went to Australia, to spend two months living in Sydney and doing research with my friend and colleague Barbara Gillam. Eve and I had been scrupulous, in our commuting, to spend almost every weekend together, taking turns doing the traveling. So this trip to Australia was by far our longest separation since we had first started living together. I don’t remember now, but I imagine that the security and comfort of Eve’s position made this absence feel more possible for me.
My visit to Australia went well, but it ended badly. I had planned to leave Sydney toward the end of February and to spend several days in New Zealand on my way home. Then, a week or so before my planned departure, I heard from Eve that she had found a lump in her breast, that it was feared to be cancer, and that she was to have a biopsy soon to examine it. I canceled the New Zealand trip and returned directly to the US and to Durham.
Lumps in her breasts, and even a biopsy, were not new to Eve. I wish I remembered her medical history better, but I think she had found a lump when she was living in Ithaca, during her post-doctoral fellowship, and had a biopsy done in the local hospital there. Then later she had found another lump and had a biopsy done by a highly respected breast cancer surgeon at Columbia Presbyterian in New York City. His name was Dr. Habif and I remember his claim to Eve and me that he had a tactile memory for the breasts of the women he had examined and on that basis alone could detect changes when he reexamined them months later. I don’t remember how Eve was referred to him but she did see him several times. We found him reassuring. There was also a lump on her thyroid gland (on her throat) which he biopsied at one time. None of these biopsies found any cancer. Eve went to Dr. Habif for follow-up exams for some time but then he retired and she ceased to have regular follow-ups as far as I remember. I do remember that Eve did regular self exams of her breasts, that she was told that her breasts were naturally lumpy, and that (as is generally the case with younger woman) her breast tissue was dense so that detecting and imaging lumps was difficult. So when Eve told me, in Australia, that there was another lump in her breast, I hoped that it would again be benign. But Eve made it clear that both she and her doctor at Duke did not expect that outcome. They were right.
Eve’s medical oncologist at Duke was Eric Winer. Her surgical oncologist was George Leight. Her biopsy showed that her tumor was malignant, and the imaging showed that it was large. As was more common at that time (I don’t know in her particular case if things would be different now), Dr. Leight performed a radical mastectomy, removing all of her right breast and all of the lymph nodes from the right armpit, several of which were also found to be cancerous. The size of the tumor and its spread to several of the lymph nodes made her prognosis more negative than it otherwise would have been. Eve did not have radiation following her surgery. She did have six months of chemotherapy, delivered intravenously at (if I remember correctly) monthly intervals. The breast cancer itself produced no symptoms but the symptoms of the chemotherapy were severe. The standard treatment at the time, which Eve received, was referred to as CAF, which is the initials for three chemotherapy drugs: cyclophosphamide, doxorubicin, and fluorouracil. All of these are poisons, the first related to mustard gas, the second capable of producing life-threatening heart damage, and the third an agent that kills cells by interfering with their metabolism. Because the cancer consists of growing cells, it is somewhat more susceptible than normal cells to damage by these agents. Treatment thus aims to find a balance that does lethal damage to the cancer while doing more tolerable damage to normal cells.
Eve lost all her hair, which was psychologically very traumatic. Her hair was long and red and very beautiful; it was a vital part of her self-image. She bought a wig — a good one, but not good enough. It didn’t look natural. She said it made her feel like an Hasidic woman. She didn’t wear the wig but wasn’t comfortable being bald socially, so she collected and wore a large number of varied and beautiful head coverings. It took, as far as I remember, years for her hair to grow back, and it was never the same, was always thinner and lighter than previously. She tended during her years at Duke to keep it short, and she experimented with having it dyed (a bleached blond, for example).
Chemotherapy was also physically debilitating. It extended roughly from March to August, and I remember being with her on a visit in Ithaca the following October when even a short walk through one of the gorges was physically exhausting. It’s hard to remember now the time course over which her strength recovered. Not long after that (I think it was the 1991-92 academic year, but it may have been the following one), Eve had a year-long fellowship at the National Center for the Humanities, located in the Research Triangle industrial park between Durham and Raleigh. During that time, she joined a gym near the Center and worked out there on a regular basis for some months. They had sophisticated training machines that measured her strength and adjusted their demands accordingly, so that her strength increased gradually. Eve became muscular. It was a one-time experience, a deliberate and successful effort to counter the debilitating effects of chemotherapy. I took a series of photos of Eve in muscle-building poses and she made a calendar using them and gave copies to some of her friends. It was symbolic, I guess, of life going on, of making the best of it. Eve always said, as I recall, that she was not particularly attached to life, but I think she was ambitious to make, and to continue to make, the most of her talents, of whatever talents were left to her.
Eve felt diminished cognitively by her cancer treatment. Again, I don’t remember the time course of this at all well. But she became keenly interested in the research on ‘chemobrain’ as it developed over the years and felt that her own earlier impressions were vindicated by this research. The community of women who had had chemotherapy talked about its cognitive effects long before these effects were at all well accepted by the medical community. This is presumably because the measures used by the research community were far too crude. Eve was in no way cognitively debilitated (as she was, for a while, physically debilitated). She was enormously smart, had a tremendously high IQ (measured in high school at about 175 I think she told me, although of course IQ is itself far too crude a measure to capture or characterize Eve’s dazzling creative talents) and so had plenty of IQ points to spare. I saw no diminution of her abilities and I’m not aware that others did either. But Eve did. She spoke particularly about her “word hoard” and about how it was less easily available to her than it had been. I’m terribly conflicted about how to regard this. On the one hand Eve did so much wonderful work in the almost two decades following her chemotherapy — wonderful writing, wonderful teaching, wonderful art; I don’t want to think or say anything that might seem to diminish those extraordinary accomplishments. On the other hand, it feels so awful to me, so tragic, that someone with Eve’s very exceptional talents, with the ambition to make the most of them, and with the worldly circumstances that gave her exceptional freedom to do so, should at such an early age (she was 41) have been made to feel this loss.
The biopsy of Eve’s tumor, following her surgery, found it to be estrogen receptor positive (ER+), which is a common type of breast cancer tumor. The finding is interpreted to mean that the tumor’s growth is stimulated by the hormone estrogen. This ‘fact’ guided Eve’s therapy for many years. Eve’s treatment, following her chemotherapy, consisted in taking a daily oral dose of a chemical called tamoxifen, which was thought to partially block the effects of the estrogen and so to starve the cancer of something that it needed in order to grow. Tamoxifen had shown effectiveness in clinical trials for periods of up to five years, following which it’s good effects appeared to diminish or even reverse. So Eve was set on a five-year course of tamoxifen.
Another of the side effects of chemotherapy is to induce menopause (usually, although not always, permanently), which itself diminishes the levels of circulating estrogen. This combined with the further effects of the tamoxifen can produce even more marked menopausal symptoms. Eve was plagued by hot flashes. Having always been made uncomfortable by heat, these frequent hot flashes were very unpleasant for her. She sought various ways of diminishing them, but not, as far as I remember, very successfully. Apart from that, though, I don’t remember other serious side effects of the tamoxifen treatment. As Eve recovered from the effects of her chemotherapy she recovered something like her normal health, as far as I recall, apart from the side effects I’ve already mentioned. She was certainly very active during this time at Duke, teaching, writing, joining in political protest, taking on various administrative roles (such as with the MLA) and traveling widely and frequently to lecture on her work. This period lasted almost five years.
Five years has sometimes been conventionally regarded as an important milestone following treatment of breast (and other) cancer. Although it’s well known that treated cancer can recur ten, fifteen, twenty years after treatment, most recurrences occur within five years, so that when five years is reached without recurrence there is guarded optimism that the cancer has been cured — eliminated from the body — by the treatment.
Five years also being the established duration of treatment for tamoxifen, and no further treatments having, at that time, been established as having additional benefit, if Eve had completed five years of tamoxifen she most likely would have ceased to have any treatment at all. Then the cancer and its treatment would no longer have been part of daily life and concern about it could perhaps have receded.
Eve didn’t quite reach that point. I don’t remember just when she started taking tamoxifen, but I believe she was given a few months to recover from chemotherapy first, so she started it sometime in the late fall of 1991. It was at the very end of August, 1996, that Eve’s cancer was found to have recurred, having spread to her spine.
Of course the spread of the cancer had begun at some time before it was discovered, perhaps had begun even before her initial treatment. But even when she began to have symptoms it took some months before they were correctly understood. She began having neck and back pains in the late spring of 1996 but her primary care physician at Duke unaccountably did not think of the possibility of metastatic cancer. Instead, Eve was prescribed physical therapy, whose manipulations might have had — but fortunately did not have — disastrous effects on her weakened spine.
For me learning of Eve’s cancer recurrence was sudden, unexpected, and one of the worst moments I experienced during her illness or during my life. I can’t remember if I knew that she had plans for imaging; I probably did, but if so they would have been to investigate her back pains, which we had not been led to think of as being related to her cancer. I flew down to Durham, as planned, on the Friday evening of the Labor Day weekend but instead of being greeted at the airport by Eve, as I had expected, I was met by our dear friend Mandy, who was then a graduate student, and Eve’s niece Rosie, who at the time was staying with Eve. They told me that the imaging had shown that Eve’s cancer had metastasized to her spine. This meant, as I knew, that her life expectancy was now only two or three years, more or less. There was nothing to say or do; I remember having the feeling of the bottom having dropped out of everything; I remember being quiet, too emotional to speak, and crying a little.
The physicians who saw the MRI images had been alarmed at the weakened condition of Eve’s upper spine. They were afraid that a vertebra of the spine might fracture, impinging on the spinal cord and causing permanent paraplegia. I don’t remember the exact timing, but as I recall Eve was immediately given a temporary neck brace to wear and was told not to drive or do anything strenuous. Within a few days she was fitted with an elaborate neck brace that went over her shoulders and her breast bone. She wore this uncomfortable device throughout the day for months (I can’t remember now just how long) and was also limited in her sleeping positions during the night. During the time that she wore this brace she decorated it with polymer clay figures that she had made. I still have it, in her archive.
The second aspect of her immediate treatment was a course of radiation to the affected area of her spine. This was begun very soon, but I don’t remember now quite how it was coordinated with Hurricane Fran, which came through Durham a few days later and left most of the town (including Eve’s house) without power for a week. Her radiation oncologist at Duke told us that although the radiation was technically labeled as palliative, because metastatic cancer could not be cured, he was giving her a dose strong enough to be associated with curative treatment, his reasoning being that Eve’s cancer appeared to be slow in developing (indolent) and so he wanted the effects of the radiation treatment to protect that area of the spine as long as possible. This was a wise decision and may have contributed substantially to the length of time that Eve was able to live following the diagnosis of her metastasis.
The radiation treatment was five days a week, extending over several weeks (probably six, but I don’t now remember for sure). The radiation center was set up to be efficient so that patients coming daily didn’t have to spend very long there each day, generally well under an hour as I recall.
Eve was not warned that this radiation to the upper spine, including that at the back of her neck, would burn, like a sunburn, her esophagus, so she was more alarmed when this symptom appeared than she would have been had she been warned to expect it. This burn made it painful for her to eat, especially anything that wasn’t soft. So for some weeks she limited herself to beverages and soft foods (I remember Jon Goldberg making pureed carrots for her).
The idea of the radiation was to kill (or greatly retard) the cancer in that area, which it seems to have done, but it could not of itself restore the bone, which had to regrow. This regrowth was a slow process and very difficult to assess because even when bone has regrown it doesn’t look normal to imaging. So for the rest of her life, Eve lived with a persistent uncertainty about how weak her spine was, about what strains it might or might not withstand. There was a fear (or terror), for example, every time the vehicle she was riding in was jolted or went over a bump that it might fracture her spine and leave her paralyzed.
Following Eve’s radiation treatment, Eric Winer recommended having no systemic treatment. His reasoning, as he explained it, was that the cancer had been accustomed to the low level of estrogen produced by the tamoxifen and so might be impeded by the sudden withdrawal of the tamoxifen. Eve thus went for about a year, from the fall of 1996 to the fall of 1997, without treatment. As with all of Eve’s treatments over the years, there is no way of assessing retrospectively whether Eve might have done better, in the long run, with a different approach to her treatment; there is no basis for comparison. Perhaps the lack of tamoxifen did impede the cancer for a while. But in a year, in October of 1997, it was found to have progressed again and to have invaded another, lower portion of her spine.
In the meantime, Eric Winer had left Duke for Harvard, where he went on to become one of the most eminent clinical breast oncologists in the country, heading a highly significant clinical trial. Eve and he continued to be in touch. They had grown close during the years he was monitoring her treatment, and we turned to him again later for his advice. Eve’s treatment was taken over by another clinical oncologist at Duke.
Eric’s leaving Duke made it easier for Eve to leave too. The situation in the English Department had become somewhat less attractive to her; Stanley Fish, who had brought Eve to Duke, was no longer chair, and a more conservative spirit was becoming more assertive in the department. But principally, Eve and I had agreed that after living a commuting life for about twenty-five years it was time for us to live at least in the same town if not the same abode. I looked into the possibility of coming to Duke and Eve investigated the possibility of coming to New York City. Although Duke did make me an offer, it was not a very attractive one. In New York, on the other hand, Eve’s inquiries had produced a very positive response, through the mediation of our dear friend Josh Wilner, from the Graduate Center of the City University of New York (CUNY). Eve had moved rapidly. In the fall semester of 1997, she was still living in Durham but was on leave from Duke, trying out CUNY by commuting to New York weekly to teach a seminar at the Graduate Center even while the making of a formal offer was still in process.
The formal offer from CUNY came through and Eve accepted it. We made some necessary repairs on her house, packed a few things to take, gave away other things, and arranged for an auctioneer to come in and sell the rest of Eve’s possessions — her car, furniture, large art pottery, and so forth — after Eve had left. She formally took up her position at CUNY as of January 1, 1998, moving up to New York City in the first part of that month.
Eve had not yet sold her house when she left Durham. She needed time to do that and also to look around and decide where she wanted to live in New York. My own studio apartment there (on 11th Street just east of 5th Avenue) is very small, so there was no question of us both living there. We decided that I would keep my apartment and that Eve would find her own place nearby. That way we could maintain the independence of our commuting years but without the commute. Eve found an equally small apartment at the old Fifth Avenue Hotel, then converted into rental units, on 5th Avenue and 10th Street. She lived there for a year and a few months before moving to a somewhat larger studio apartment that we bought on 16th Street just west of 5th Avenue, where she stayed for the remainder of her life.
The progression of Eve’s cancer had been discovered when Eve’s move to New York City was little more than two months away, so we and her oncologists agreed that she would wait and begin radiation treatment to the affected part of her spine in New York after she had moved there. Unlike Durham, where there was no question of being treated anywhere other than the highly respected Duke Hospital, New York City had many options; so our first task was to decide where and by whom she would be treated. On the advice of Eric Winer, Eve made an appointment to see Dr. T. at Memorial Sloan Kettering (MSK). The choice of MSK was obvious, given its reputation for cancer treatment; with Dr. T., who was a relatively young physician, I don’t remember why she was recommended.
Part II Ups and downs
Our experience with MSK and Dr. T was mixed. She seemed to be a dedicated physician — she had a cold when she first saw Eve but was carrying on anyway — and she had a big smile and a friendly manner. But she always seemed rushed — I don’t remember her ever once sitting down — and her friendliness was impersonal. She never addressed Eve by name (first or last), never expressed the slightest interest in her as a person or seemed to know the slightest thing about her beyond her MSK medical record. We were inclined to assume that she remembered Eve from one visit to the next, but we had no evidence of it. And she was ‘by the book’. She was young and showed little sign of clinical judgment based on her own experience in her approach to treatment. I remember a couple of indications of that, one of which I’ll save until later. The other came from a comparison we made between her and Erik Winer. He had said to Eve that her cancer appeared to him to be indolent and that in spite of the statistics he expected her to be around for quite a while. This of course was somewhat reassuring (and, as it turned out, correct). We tried this remark out on Dr. T, who replied rather brusquely that cancer could change quickly; then she quoted the statistics to us.
MSK was difficult too. They trusted no one but themselves, so every image or test result that we brought to them from Duke had to be repeated in their facility. This caution was in some ways impressive but it slowed things down. And they were not well run at that time (although when we returned years later they were in some ways improved). Every appointment involved long waits, sometimes for hours. And their handling of patient billing issues was both inept and aggressive.
Eve was treated at MSK for about six months. She had a series of radiation treatments to the portion of her spine (somewhat lower down) to which the cancer had spread. Also, after her cancer progression had been detected at Duke, Eve had begun to take, as a daily pill, a medicine called arimidex, which was a relatively new treatment that also aimed, like tamoxifen, at suppressing the effects of estrogen, but which worked through a different biochemical mechanism than tamoxifen.
I should perhaps insert here that there is a vast armament of more or less ineffective treatments for metastatic breast cancer. The standard clinical procedure is to begin with what seems most promising (in terms of broad patient characteristics such as being ER+, the statistical efficacy of the treatment, and its likely side effects). The idea is to maximize the chance of temporarily slowing or halting the spread of the cancer, while minimizing the severity of the treatment’s potential side effects. When that treatment is found to no longer be working (some never work at all) or its side effects become intolerable, that treatment is stopped and a new treatment is tried. These decisions are based on statistics and clinical experience, but (at that time at least) it is impossible to predict how an individual patient will respond to any particular treatment. These successive treatments are called the first-line treatment, the second-line treatment, and so on. A patient can move through through three or four or five or even more treatments, but the general finding is that successive treatments are less and less effective, for reasons that are not well understood, so that eventually the patient runs out of options even though there may still be many treatments she has not yet tried.
Some cancers, including breast cancer, have what are called tumor markers, which are biochemicals that circulate in the blood and give some indication, although an imprecise one, of the metabolic activity of the cancer. Monthly measurement of her tumor markers was one of the main ways that the effectiveness of Eve’s treatment could be assessed. When she started treatment at MSK, Eve’s markers were elevated, and during the first month or two at MSK the arimidex did not lower them. When we next saw Dr. T., she said that it appeared that the arimidex was not working; she seemed ready to abandon it and move on to the next treatment. I was reluctant to do so. Arimidex sounded so promising and Eve had not been taking it very long. Also, Eve’s hot flashes, which for some time had not been bothering her as much, had quite recently gotten substantially worse, and I took this as an early sign that the Arimidex was beginning to kick in, suppressing her estrogen levels. (One might think that it would be helpful to measure a patient’s estrogen levels directly, but this was never done, perhaps because the available clinical tests were too crude to be useful in differentiating the patient’s already low estrogen levels from the extremely low levels that effective arimidex would produce). We waited another month, and Eve’s tumor markers began to go down. As it turned out, the arimidex was the most effective treatment that Eve had; it worked well for over six years. This is the other example of our lack of confidence in Dr. T.’s clinical judgment.
Eve’s first six months in NYC also brought the beginnings of her involvement with alternative, or complementary, forms of treatment. Following Eve’s radiation treatment, she developed a problem with walking. She could walk, but after a few blocks it became very painful for her to continue. One of the strengths of MSK is its army of specialists. Any complaint that a patient has may lead to a referral to the appropriate specialist. So Eve’s back was imaged and examined by a specialist (I no longer remember the details) and no problem was detected; yet her difficulty with walking remained. It was both frustrating and ironic that this problem appeared just at the time when, after decades of living in places in which she went everywhere by car, Eve had moved to the quintessential pedestrian city, offering so much to someone who could enjoy a long walk — and so little to someone who could not.
So I took Eve to see my osteopath. I had been referred to Dr. Steven Weiss by Laverne who had in turn been referred to him by her somewhat unconventional physician (a doctor given to inviting select groups of his patients over to his apartment for discussions of political, philosophical and other weighty issues). Osteopathy had its start in the 19th century as a more holistically oriented alternative to conventional medicine. But over the decades osteopathy, in its desire for greater respectability as a profession, had moved closer and closer to conventional medicine, so that most doctors of osteopathy (DOs) practicing today are hard to distinguish from MDs. But a few retain their allegiance to the holistic roots of their discipline; Dr. Weiss is one of the few. His genius is in diagnosis.
Steven asked Eve to walk back and forth a few times in his examining room. After watching her, he told Eve that, although he couldn’t rule out the possibility that the cancer was contributing to her problem, he could see a non-cancer issue related to her problem with walking. Then he invited Eve to come and sit on his lap. This startled both of us, but Eve gingerly complied and he proceeded to gently jiggle her up and down for a few minutes. He then asked her to try walking again, and she found that the pain was gone. Although Eve may have had additional followup treatments with him (I’m not sure), her difficulty with walking was gone following that initial jiggle, and it didn’t come back — this being the closest thing to a miracle cure that I have ever witnessed. Steven explained that the problem had arisen from something to do with the sciatic nerve, which winds around the hip somehow and runs down into the legs, and that he had released it from its difficulties.
Eve returned to Steven several times over the years, for various problems, and he was generally helpful, but toward the end of her life the issues associated with the growth of the tumor adjacent to her spine became predominant and Steven told her that he could no longer offer her more than very temporary relief.
I’m pretty sure it was someone at MSK — it may have been Dr. T. — who referred Eve to Dr. Raymond Chang. We had asked about the possibility of enhancing her treatment with some form of complementary medical treatment. Dr. Chang had practiced for a while at MSK and then had left to establish his own private practice. He was trained in conventional Western medicine but seeks in his practice to combine that approach with techniques from traditional Chinese medicine (TCM). His practice is evidence-based, focusing on treatments for which there is some promising evidence in the scientific literature but not enough to meet the standards of conventional medicine. He sometimes uses prescription medicines for off-label purposes but more often uses supplements; he looks for treatments with minimal side effects so that (I imagine) even if they don’t turn out to be helpful, at least they won’t be harmful. He is expensive, and doesn’t accept insurance, but Eve and I had good luck in being reimbursed for his treatment (as we did with Dr. Weiss).
Eve saw Dr. Chang regularly thereafter until, in the last month or so of her life, mobility issues prevented her from going to his office. He would look at her records, discuss her current situation, and offer recommendations on supplements to take. He often gave us a perspective on specific issues that differed from, and usefully complemented, the ones we were getting from her conventional physicians. He is pragmatic in limiting how many supplements he recommends, but Eve tolerated taking pills well and took 50 or more a day (the count varied) spaced out over breakfast, lunch, dinner, and bedtime. I took care of keeping her supplied and making up daily pill boxes with the pills divided by time of day. (Dr. Chang also recommended a powered Chinese mushroom that needed to be mixed into a warm beverage, such as tea, but it was somewhat bitter and Eve never took to it.)
Over the years, Dr. Chang adjusted his recommendations, both as Eve’s condition changed and as the balance of evidence shifted. It’s impossible to know, with only a single patient, whether any of his recommendations were helpful or not. Eve did live for much longer than statistically predicted, however, and I’m inclined to think that he did help; but I have no idea how much he helped. He’s an intelligent, well-informed, and thoughtful practitioner, though, so we probably did as well with him as we would have done with anyone.
Eve had started being seen at MSK shortly after she arrived in NYC, at the beginning of 1998. By the time summer arrived she wanted to move on. I was hesitant to leave MSK, because of its excellent reputation, but Eve didn’t want to continue with them or Dr. T. any longer. She had gotten a recommendation for an oncologist named Alan Astrow, who was practicing at a new cancer center associated with St. Vincent’s Hospital in Greenwich Village, so we went to interview him. We had a long conversation with him and his nurse; I don’t remember the details, but we liked them both and were impressed with the set-up of the cancer center (which was run by a medical corporation separate from St. Vincent’s). So, late in the summer Eve said goodbye to Dr. T. and shifted the responsibility for her care to Dr. Astrow. (Her excuse to Dr. T. — and part of her actual motive for moving — was that the St. Vincent’s center on 15th Street was only a short walk from her Chelsea apartment and so was much more convenient for her than MSK on the Upper East Side.)
Eve had a good, long run with Dr. Astrow. As I’ve said, the Arimidex, which she started before she left MSK, worked well for years. So for a long time Dr. Astrow was seeing her and looking at her tumor markers periodically, but not needing to change her treatment.
When Eve started seeing Dr. Astrow, and for some years thereafter, it was his practice to also order periodic bone scans of Eve. These were basically, as I understand it, full-body x-rays. Their purpose was to look for new sites of metastatic cancer, primarily in the bones. Their weakness was that they would light up to any kind of insult to the bone, so they were given to false positives. Eventually these were dropped (at least by Dr. Astrow and perhaps by the field more generally); Dr. Astrow concluded that if the cancer did spread this would be detected by the pain it caused as readily as by the bone scan. I mention the bone scans primarily because Eve was fascinated by the images they produced. We kept them (I have them still), and she used these ghostly images of herself beautifully in some of her art.
Although these were good years, compared with what followed, they were not without problems. I mention a couple of these here from memory and am sure more could be found by searching through Eve’s old medical records.
At one time Eve developed an ulcer, which may have been caused or exacerbated by a couple of her supplements. The ulcer was treated and healed, and Dr. Chang stopped the suspected supplements, both of which had reasonably compelling evidence for their inhibiting effects on cancer. As with the side effects of conventional treatment, this illustrates the double bind that often grips a cancer patient: treatments that appear to be somewhat effective against the cancer may be too toxic in other ways to be tolerated.
Another example of this double bind came with a supplementary treatment that Eve had started at Duke when her cancer progression was detected in late 1997. This is also a good example of how treatment strategies can change over time as evidence about their effects accumulates. There is a class of drugs called bisphosphonates that are used to strengthen bones in osteoporosis. But evidence was emerging that they also had a protective effect against the spread of cancer to the bones. So once a month for many years Eve walked over to the 15th street cancer center to spend a few hours getting an IV drip of bisphosphonates.
Then, around 2005, an oral surgeon on Long Island published a disturbing article reporting a number of cases, among patients having long-term treatment with bisphosphonates, of a particularly nasty condition known as osteonecrosis, in which the lower jaw and its associated teeth begin to crumble and disintegrate. This was alarming to Eve, as it would be to anyone, but more so to her because she had a serious phobia about dentists and dental problems (deriving from a childhood spent getting cheap dental care from dental school students). The article, recognizing their potential usefulness, did not recommend against bisphosphonates for cancer patients, but it did recommended caution. Dr. Astrow cut back the dose, and Eve began watching closely for any signs of incipient osteonecrosis.
In mid-2006, Eve eventually did detect a suspicious sign. We rented a car and drove out to Long Island to confer with the surgeon who had discovered the problem. He confirmed incipient osteonecrosis. He treated the immediate problem but left to Dr. Astrow the decision about what to do with Eve’s bisphosphonate treatment; Astow, and Eve, decided to discontinue it. The osteonecrosis eventually healed. Eve was left, however, without the anti-cancer help of the bisphosphonates. How much this loss contributed to the eventual fatal spread of the cancer in her spine is unknowable, but it seems probable to me that it did contribute.
Shortly before Eve died, the medical consensus, at least at MSK, was that a lower, and much less frequent, dose of bisphosphonates could still have some effect against cancer to the bone while being much less likely to stimulate osteonecrosis. Eve was scheduled to begin this new treatment and would have done so had she lived. (Incidentally, one thing I have successfully prevented myself from doing — so far at least — is to scan the literature looking for improvements in breast cancer treatment, and then to dwell with regret on the thought that such improvements were not available to Eve. I’m confident that treatments will eventually improve significantly — and I’ll be very glad when they do — but I try to accept that Eve and I had no choice but to do our best with what was available to us at the time.)
When a patient is regularly receiving IVs over an extended period, it’s common to surgically implant a device, called a ‘port’ that has a tube going into a vein and an opening, just beneath the skin, into which a needle can be inserted. This allows the IV to be given without the nurse or technician having to find and access a vein every time. This can be particularly useful with cancer patients because chemotherapy tends to be destructive to the veins, making them narrower, more brittle, and more difficult and painful to access. Eve had such a port implanted in her arm when she was initially doing chemotherapy at Duke. Her treatment at that time was intended to be curative, and the port was removed after her treatment was completed. Then, years later, after the cancer had metastasized and she was again having regular IV infusions for a variety of reasons, including the bisphosphonates, she had a port implanted in her chest. Accessing the port was a special skill that only some nurses had training in and that even those nurses were not equally good at. So it sometimes required several tries. Some places provided a numbing cream that could be put on the skin in advance. Ports could wear out or become permanently blocked and non-functional, so we were always somewhat anxious when the second or third attempt was unsuccessful; sometimes another, more expert nurse would be summoned. But Eve’s port never failed, although occasionally a long anxious effort was needed before it worked.
The real problem was when a nurse or technician did not want to use the port. This did not happen at the treatment center where Eve went for her regular IV, but it did happen on multiple occasions when we were someplace else where they wanted to draw blood or do an injection (as is required, for example, in some imaging techniques). Sometimes the person was not trained in how to access ports and no one with training was handy; sometimes the person was confident that they just didn’t need to use the port (which required special equipment that might have required a special effort to locate). But in fact it was almost impossible to access Eve’s vein’s directly. They were small to start with, they were unusually deep below the surface of her arm; and they had been permanently damaged by chemotherapy. So these efforts resulted in a lot of rummaging around with the needle, first in one arm, and when that was unsuccessful, in the other arm, leaving both arms bruised and sore for days after. This of course was very painful to Eve and because it was also unnecessary and futile, she hated and dreaded it. Increasingly we resisted these attempts and eventually came to refuse them entirely. This led to multiple encounters of varying degrees of unpleasantness. But the patient has the right to refuse treatment, and this is what Eve said she would do, if necessary. As far as I remember, she never was denied treatment for this reason; when it came down to it, someone was found to access her port. But these emotionally painful struggles are among the worst aspects of what I remember of Eve’s care.
Sometime not too long after Eve moved to NYC, we became involved with Project LEAD, which is a project of The National Breast Cancer Coalition (NBCC). The NBCC is an advocacy group that emphasizes lobbying for government spending on breast cancer research, evidence-based detection and treatment programs, and the active participation of patient advocates in the government policy making and funding process. The NBCC set up Project LEAD to give advocates more background in the science of breast cancer research so that they can better understand and participate in discussions of patient concerns about research developments and funding decisions. Project LEAD offers a five-day residential crash course in the fundamentals of the science behind breast cancer research and treatment. This isn’t much time, of course, but it does get advocates started and gives them more confidence to join in the discussion. Chapters of Project LEAD graduates exist in various places around the country, including in NYC; they meet regularly to discuss new research papers, hear talks by researchers, and debate policy issues. They attend scientific meetings both to learn about new research and to present the patient point of view; their members are sometimes invited to participate in government hearings or to join panels that are making decisions about the government funding of breast cancer research.
The Project LEAD course is offered several times a year in various parts of the country. Admission requires an application, but the program is free to those who are accepted. I don’t remember how we found out about Project LEAD, but one summer, when their course was being offered in Westchester county, we applied and were accepted. Eve and I enjoyed the course, worked hard at the material, and felt well-initiated into the group. After that we both regularly attended chapter meetings for several years. We also went to the annual San Antonio Breast Cancer Conference, which is the principal annual meeting devoted exclusively to breast cancer research. Also, toward the end of this period, Eve volunteered to be a patient advocate on the panel of a government funding agency in California. She read a stack of applications and flew out to California for several days to participate in the panel’s discussions and decisions. That experience, however, left Eve dissatisfied. She felt that the level of knowledge she had gained was inadequate to allow her to make sufficiently informed judgments. It may be that the gradual deterioration in her health also contributed, but she became less regular in attending the Project LEAD meetings. She continued to follow their forum online, however, and maintained a high respect and admiration for the contributions made by several of the members, who devoted a great deal of time to Project LEAD and had attained an impressive level of understanding of the issues. I continued to go to the Project LEAD meetings until shortly before Eve’s death.
Eve’s other foray into patient advocacy was an advice column that she wrote for a year or more for Mamm, a magazine for women with breast cancer (modeled on Poz — a magazine for people with AIDS). It may have been through Project LEAD that Eve met the editor of the magazine and was offered this job. She approached it with relish, but there weren’t many letters requesting advice. So Eve would first think of a topic on which she felt that she had good advice to give and then herself write the letter requesting her advice (a common practice of advice columnists, according to what I’ve been told). Her columns are witty but also serious, offering valuable advice. I’d like to see them gathered together and published someday, since they are no longer available through Mamm, which appears to have ceased publication.
Part III Held / Dropped
By mid-1998 Eve had completed her radiation treatment at MSK and knew that the arimidex appeared to be stabilizing her cancer. The following six years, although far from trouble free, were a relatively good time for her health. Her cancer treatment, although daily, was a routine that consumed relatively little time and left her feeling reasonably well. She took her many pills four times a day, walked over to SVCCC for her bisphosphonate infusion once a month, and also had regular blood tests, bone scans (in the first few years), checkups with Dr. Astrow and consultations with Dr. Chang. I remember that toward the end of this period, Dr. Chang became so enthusiastic during one appointment about the stability of Eve’s condition that he suggested that perhaps the combination of mainstream and complementary treatment had succeeded in eradicating the cancer from her body.
By March of 2004, it had been almost eight years since the metastasis of Eve’s cancer had been detected. When it was first detected, and then within a year spread further, Eve expected to live for only two or three more years. During those first few years there was an urgency about Eve’s explorations of Buddhism, her artwork, and her writing. As the arimidex continued to be effective, however, it is my impression that Eve’s view of her illness shifted somewhat. Neither she nor I were convinced by Dr. Chang’s brief optimism, but how long Eve might live came to seem more uncertain, the time of her death more indefinite.
Around the time, in 1996, that the metastasis of Eve’s cancer was first detected, the first signs of hope in the treatment of AIDS were beginning to appear. During the next few years, “cocktails” of multiple drugs were gradually adopted and improved, and data accumulated showing that the lives of patients who had access to these cocktails could be prolonged, in some cases, for many years. This transformative development in the treatment of AIDS also effected Eve’s thinking about her own disease. With new cancer treatments continually under development, it was possible to hope that if one treatment failed, another possibly better treatment might be available to take its place. Although, as with AIDS, the mainstream thinking continued to be that metastatic cancer was not curable, it began to seem possible that it might be contained almost indefinitely.
How far Eve’s thinking may have sometimes gone in this direction I don’t know. At the beginning of 2004 her own cancer and its treatment entered a new phase, one of ups and downs, of successive new treatments sometimes bringing improving health until they began to fail, of cycles of slow improvement and slow decline punctuated by sudden physical failures requiring urgent treatment, of a continual balancing of the potential good effects of treatment with its sometimes barely tolerable side effects, and of many attempts to control those side effects with ancillary treatments, each having their own side effects. This irregular, unpredictable rhythm of ups and downs continued for nearly five years. We might almost have been tempted to think, sometimes, that it might go on indefinitely.
Other aspects of Eve’s life during this period were constrained to follow this irregular rhythm. When Eve was doing well she worked more energetically on her art and her writing, she traveled and gave talks, and just for pleasure augmented these trips or took other trips. From the time of her cancer’s metastasis, however,I had not been comfortable with Eve’s making trips out of town by herself; I wanted to be on hand if difficulties arose and so almost always went with her on her trips. Also, I increasingly worried about her traveling to less developed countries, where the available health care might be of questionable quality, and of making very long trips, such as on our previous flights to Asia. Thus during this period our travel was mostly to Europe or within the United States. Even so, sometimes Eve had to cancel planned trips or talks because of downturns in her condition.
Eve remained physically active, but even before 2004 those activities had gradually become more limited. Eve had taken up weaving in Durham and had purchased a large professional loom, which she brought to her small rented apartment in New York, but she gave up weaving not too long after that because of the strain that it placed on her back. Likewise, although she began learning to turn pots on a wheel, she gave it up because of the back strain. During the first years of the period beginning in 2004, Eve was often very active for prolonged periods with somewhat less demanding but nevertheless quite physical art-making activities. During the last year or so of her life, however, even these activities became more sporadic and she was able to produce little art. Eve’s ability to get around town on her own also narrowed. Our long neighborhood walks became shorter and less frequent, although she continued to make the 10-minute walk between her apartment and mine and continued occasionally to walk out to do a little shopping or to meet friends at local restaurants. She stopped taking the subway because of their many flights of stairs but continued to take the bus along familiar routes, such as to and from her office. Increasingly we turned to taxies, and then to private cars which could be scheduled and would come directly to Eve’s address.
Some core activities continued throughout this period. Every week, during the academic year, Eve held her CUNY office hours and gave her two-hour evening seminar. I can only recall three occasions, up to the time of her death, when Eve’s physical condition forced Eve to miss a meeting of her seminar. Eve continued, too, to keep up an active social life, seeing friends at her apartment or sometimes at local restaurants, although she had a preference for the Manhattan luxury of being able to ‘order in’ from almost any of the local restaurants that she liked. Also, until she was confined to her bed during the last couple of weeks of her life, Eve spent many hours of every day at her computer. Sometimes she was working on her writing or teaching preparation, but she also carried on an extensive correspondence, regularly followed several blogs and mailing lists, did most of her shopping, managed her finances, speculated on the stock market, and for hours at a time played games such as computer solitaire. She spoke of playing these games both as a meditative activity and as times in which she often did productive thinking about her work.
Dr. Chang’s optimistic speculation about Eve’s cancer having been eradicated, made at an appointment in early January 2004, was ill-timed. At the end of that January, at a checkup with Dr. Astrow, Eve told him that she was having pain at the back and side of her neck when she swallowed. He ordered a bone scan for her and then an MRI. Both showed progression of her cancer to additional vertebrae in her spine. In mid-March, when she met again with Dr. Astrow to review the results of the imaging, he recommended that she stop taking arimidex and try a new treatment.
Dr. Astrow recommended one treatment. We went to Boston to see Dr. Winer, who recommended another. We decided to follow Dr. Winer’s suggestion, which Dr. Astrow also accepted although he said it would not have been his first choice. It was an experimental treatment that had a logical if somewhat counterintuitive argument in its favor. The idea was that because the cancer had presumably adapted itself to a bodily environment with very little estrogen, the cancer would be unable to tolerate high doses of estrogen. There was some laboratory evidence that supported this idea and it seemed plausible to us. Eve started taking high-dose estrogen in April. We made several trips to Boston for follow-ups with Dr. Winer. At first everything seemed to be going OK, but then in late June, Eve suddenly developed a sharp pain in her groin. Imaging showed that the cancer had spread in Eve’s spine and also to the bones of her hip and pelvis; it was probable that a hairline fracture there was causing the pain in her groin; her neck was also very painful. (From this time on, controlling Eve’s bone pain became a regular part of her treatment, although the amounts of her pain medications varied over time.) It seemed that the high-dose estrogen had accelerated the spread of her cancer.
It was feared that stopping the estrogen all at once would be too great a jolt to Eve’s system, so it was gradually tapered off. Then she begin a new treatment — a monthly injection of faslodex, another agent that worked against estrogen in yet a different way. Eve also had a course of 12 sessions of daily radiation to her left hip in an attempt at local control of the cancer that had attacked there.
The faslodex had a good effect. Eve’s tumor markers, which had risen, dropped again, and repeated imaging showed some improvement by the middle of November. Eve’s faslodex treatment stabilized her cancer for about 17 months, which extended through all of 2005, although during the last few months of that year her tumor markers were creeping gradually upward. Midway through this period Eve began also taking a new anti-cancer medication, called femara, which had shown promise when combined with faslodex.
Managing the symptoms caused by Eve’ cancer and by its treatment required increasing attention. It was during this year that she had the ulcer that I mentioned earlier; it cleared up with treatment and after she stopped taking the supplement that was presumed to be an irritant to her stomach, but anti-ulcer medication became another pill that she took for the rest of her life. The narcotics Eve was now taking to control bone pain tended to make her feel drowsy and dull-witted, so we were continually juggling the amount of her pain medication, decreasing it to as low a level as she could tolerate, then increasing it as necessary. Eve began to have frequent headaches. A brain MRI fortunately showed no tumor activity there, so it seemed most likely that the headaches were a by-product of tension brought on by the pain in her neck. Dr. Chang prescribed a muscle relaxant that helped with the headaches but it too produced drowsiness; Eve usually took it at bedtime. Dr. Chang also suggested an experimental off-label treatment using a drug called noscapine; it would not be covered by insurance and would be expensive, but we nevertheless decided to try it; it could be taken concurrently with the faslodex and femara, and might have an anti-cancer effect independent of theirs. Eve began taking noscapine right at the end of 2005.
Eve had high blood pressure, which was being treated by Dr. Goldstein, who was her primary care physician. I’m not sure how Eve initially found Dr. Goldstein, but I think he was recommended by Dr. Astrow (they were both affiliated with St. Vincent’s). As Eve’s blood pressure medicine was increased, Eve began to experience episodes of faintness due perhaps to a combination of lowered blood pressure with low blood counts produced in part by her ulcer and perhaps in part by some of her other medications. Given the feared instability of her spine, it was urgent that she not fall, so avoiding too much faintness was very important. Finding just the right dosage of blood pressure medication, or medications, became another balancing act.
In 2005, which was a year of relative stability in Eve’s basic cancer treatment, I see in my notes records of about fifty medical appointments, for injections, infusions, imaging, and meetings with the half a dozen or so different physicians whom she saw regularly.
In mid-2005, Dr. Astrow told us that he had accepted an offer to head the oncology program at Maimonides Hospital in Brooklyn. We had heard that St. Vincent’s Hospital was not doing well financially, but didn’t know if that had affected Dr. Astrow’s decision to go elsewhere. We considered following him to Brooklyn but decided against it because it would have been a long subway commute for us, whereas the St. Vincent’s cancer center was only a short walk. There were two remaining medical oncologists there, one of whom was Dr. Roger Waltzman, to whom Eve transferred her care.
In January of 2006, what had been foreshadowed by Eve’s rising tumor counts was confirmed by imaging. Eve’s cancer had spread again in her bone and now also showed multiple metastases in her liver. Eve discontinued faslodex, and after consulting with both Dr. Waltzman and Dr. Winer, she began treatment with xeloda at the end of January. Unlike her previous several treatments, xeloda was not concerned primarily with estrogen. Instead, it was converted internally into an agent related to flourouracil (the “F” in Eve’s earlier CAF chemotherapy), which acted to slow the growth of tumor tissue. An advantage of xeloda was that it was taken at home as a once-a-day pill rather than as a monthly injection at the treatment center. Unfortunately, the effects of noscapine could interact unpredictably with the effects of xeloda, so on Dr. Chang’s advice, Eve discontinued the noscapine that she had only recently begun to take; we were never able to assess whether it would have helped her.
Because xeloda is a cell-killing agent, its use has to be carefully balanced so that it kills enough cancer cells while not killing too many normal cells. Thus it is usually taken daily for two weeks followed by a one-week break in order to give normal cells a chance to recover. Before starting the next cycle blood tests are done to make sure that sufficient recovery has occurred. Eve started out to follow that routine, but completed only one cycle of treatment before it had to be interrupted because of another, urgent development.
The two principle treatments for cancer such as Eve’s are chemotherapy and radiation therapy. There are some important differences between them that I should perhaps note here. Chemotherapy is systemic; it circulates through and affects the whole body. This is essential in treating metastatic cancer because the cancer cells themselves can also spread throughout the body and take root anywhere (although different kinds of cancer are more likely to settle in some places than others). Because chemotherapy affects the whole body, it must be limited to effects that healthy tissue throughout the body can tolerate. Radiation therapy, on the other hand, is local. It’s effect, broadly, is always the same, which is to kill both normal and cancerous cells, although cancer cells can sometimes be especially susceptible to it. In part because the effects of radiation therapy are more predictable across individuals than those of many chemotherapies, and in part because radiation therapy is local and so can be more intense, radiation therapy is often more predictably and quickly effective than chemotherapy in slowing or halting the growth of cancer in some delimited region. Another difference, however, is that most agents used in chemotherapy are metabolically washed out of the body within days or weeks, but the effects of radiation on tissue are cumulative over many years; this means that when an area of the body has once received a full course of radiation therapy, it cannot be radiated again, except perhaps after many years, without the danger of having a disastrous effect on normal tissue.
These differences between chemotherapy and radiation therapy became central for Eve now, at the beginning of 2006, because imaging (as well as Eve’s pain) showed that the cancer was beginning to show some resurgence in the area of Eve’s spine, in the region of her neck, to which it had originally spread and where it had originally been treated, in 1996, with radiation therapy. Eve was continuing to travel to Boston to consult with Dr. Winer, as well as being seen by Dr. Waltzman in NYC. At the beginning of February, we traveled to Boston again so that Eve could have imaging of her neck done at Dana Farber Cancer Institute, where Dr. Winer practiced; Eve also met with two radiation oncologists there. The conclusion was that Eve would try another course of radiation to her cervical (neck) spine, where it had previously been radiated, but that this would be done with a highly technical new form of radiation treatment, called Intensity Modulated Radiation Therapy (IMRT) and available at only a few specialized centers, including Brigham and Women’s, which is the hospital associated with Dana Farber. The essence of IMRT was that the radiation beam was carefully shaped, based on imagery of Eve’s spine, which was interpreted by a computer program and used to position a beam of radiation that moved around during each radiation session, varying the intensity of its beam as it moved, in a pattern precisely specified by the computer. The goal was to irradiate the bone of the spinal column while avoiding delivering any more radiation to the spinal cord that ran within the hollow tube of the spinal column. The danger was that additional radiation to the spinal cord itself could cause tissue damage there, possibly leading to permanent quadriplegia. The complexity of this treatment was such that it required several weeks for the treatment planning and computer programming to be done by a highly specialized radiation oncologist (Dr. Ramakrishna, who modestly likened the delicacy and art of his work to that of Michelangelo painting the ceiling of the Sistine Chapel). The treatment itself would require daily sessions for a month. While that treatment was being planned, Eve was to begin a somewhat longer course of conventional radiation therapy to her collarbone; this course of conventional treatment would then continue concurrently with the IMRT so that would both be completed at about the same time.
The entire course of treatment required Eve to spend almost two months in Boston. We looked into various options, and Eve settled on renting a room about a twenty-minute walk, uphill, from the hospital. Eve moved there with some books and her computer in mid February and stayed until early April, receiving almost daily radiation therapy. The spring semester was already underway at CUNY, and remarkably, Eve continued to teach her Tuesday evening seminars there throughout the course of her treatment. Dr. Ramakrishna agreed that Eve could have four sessions a week instead of the usual five (radiation is never given on the weekend). Every Tuesday, skipping radiation, Eve would take the train to NYC, have her office hour and teach her seminar, spend the night at her apartment, and then take an early Wednesday morning train to Boston, arriving in time for her afternoon session of radiation. Fortunately, although Eve had significant bone pain at that time, her physical strength and energy were reasonably good, and they improved considerably during her weeks of walking up and down the hill between the hospital and her room.
Because xeloda, like radiation, kills cells, combining their effects was considered dangerous, so in mid-February, after completing only one cycle of xeloda treatment, Eve had to suspend that chemotherapy until a couple of weeks after she finished radiation therapy. This was necessary, but the tradeoff was that she was denied any systemic treatment of her cancer, which was active in many other parts of her body, for about two months. This was a difficult tradeoff that was to recur in the following years.
Beginning in mid-April of 2006 Eve had her 2nd cycle of treatment with xeloda. It was still too early to know if it was helping. Eve began a third cycle of treatment in the second week of May, but it had to be discontinued due to another event, unexpected and to me deeply disturbing. I had made some fairly detailed handwritten notes during and shortly after this event; I’ve transcribed them and am including them here verbatim (only very lightly edited) because they are more detailed and accurate than what I could write now and also because they give some flavor of our lives at that time.
St. Vincent’s Hospital, May 2006
[This is a transcript of 4 pages of notes written by has; pages 1 & 2 are dated 5/14/06.]
Friday 5/12/06: I slept at [my studio], got up early, & gave 3 lectures @ SUNY from 9 am to 11:50am. Eve met me downstairs at 11:50 (she took the bus uptown) and we went up to the 6th floor for her appt (noon) w. Scott Richter. He didn’t see any eye disease (glaucoma etc) and did not see any ptosis (lid droop). He also said that although the pupils are different sizes this can be normal – he didn’t see any problem w. the contraction of either pupil – Thus he thinks that Eve does not have Horner’s Syndrome. He said that she does need new glasses. We need to measure her reading distance and her computer viewing distance and decide what combination of lenses she wants (progressives, reading glasses, etc.) and let him know – then he’ll write a prescription.
Next, we took a taxi to CPS (Central Park South & 7th ave) for Eve’s 2 pm apt w her dentist — cleaning & checkup — which went OK. About 3-3:15 we caught a taxi, which took me back to 42nd St. & took Eve home. Eve called me from her studio around 3:30 pm to say that there was a message from Grant about scheduling her visit to B&W [Brigham & Women’s] — the dates he was proposing don’t work for me so I need to call him on Monday about the visit. I stayed at work until 6 then went out for dinner w BG [Barbara Gillam] (at Adkeniz on 46th) and then to see Sweeney Todd. After the theater BG & I took the subway down to 14th St.; I walked BG to the Larchmont & then walked up to Eve’s place, arriving about 11 pm – 11:30 pm.
When I arrived Eve was sound asleep – I got ready for bed w/o waking her up. I then woke her up as I started to get into bed. She was surprised to see me. She said she’d gone to sleep right after calling me at 3:30 and had basically slept through until 11:30 when I woke her. But she said she had woken occasionally during that period and had been confused about the day and the time of day – she thought she had slept through until morning she said. She also said she had spoken with Mike during that period. I looked and found that she had not taken her dinner or bedtime pills. She sat up, got something to eat from the fridge, had her pills, and then we talked about a Nina Simone song she’d been thinking about & we listened to it. Eve seemed alert & OK. She said she wanted to sit up at her computer for awhile. I went to bed.
Saturday 5/13/06 (Saturday morning)
Between 4 am and 5am I woke up. Eve had come back to bed. She sat up on the side of the bed (or was sitting up) as though she were going to pee, but after a minute or so she lay back down again. I asked her if she was OK. She said ‘yes I’m fine’ or some such. Then after a few minutes she sat up again. We walked to the bathroom where, after a long delay she peed a little, intermittently. I walked her back to the bed. I don’t remember the details now, but somehow I became concerned that she was not being normally alert and responsive. So I tried to get her to wake up & talk to me, but this was pretty unsuccessful – she remained groggy – only half awake – and would only reply in short simple sentences. I had her sit up in the recliner, thinking that being upright might help, but it didn’t help very much if at all. While this was going on she said she was having difficulty breathing. It didn’t seem to be obstructed or fast — rather it was slow — she would exhale and then there would be a pause sometimes of a few seconds before she inhaled. When I asked her to, she could breathe more deeply. Because of her mental condition and the difficulty breathing I asked her if we shouldn’t call 911; she agreed, and I did. An ambulance came pretty quickly (10 – 15 min) The 2 EMS people seemed quite competent – they checked her out and took her (us) to the St. Vincent’s emergency room.
Eve was in the emergency room until 3 pm. She had a chest x-ray, blood work, and a CT-scan. No obvious problem, such as a blood clot, was found. Around 3 pm she was moved to a private room (630) on Smith 6. She had visits from 2 residents, Dr Krishna and Dr. [K.], and later in the evening, from Dr. Georgia Lee (‘George’) who works w. Paul Goldstein (or covers for him on weekends). During the evening Eve’s condition improved. I went out from 6 to 9 pm to retrieve my briefcase from the College, take a shower etc & pack for the hospital at [my studio], and feed etc. Eve’s cat and pick up some things for her from [her apartment]. When I got back Eve was much more alert and articulate – more like herself. They brought a recliner for me and we went to bed around 12:30 am or 1 am.
[pages 3-4 of my notes, transcribed below, are dated 5/15/06]
Sunday May 14. Sunday morning we were awakened early by pills, breakfast etc. Eve’s condition had worsened considerably. She was less responsive, dozed off when left to herself, and appeared to be significantly confused and aphasic. Be the late afternoon she had improved and by evening was considerably more alert and articulate although somewhat confused and inaccurate in her memories of the days events. We had a brief visit midday from Dr. Rugelov who said he was covering for Roger Waltzman. After announcing ‘So, you’re feeling better’ (she wasn’t), he told Eve that the ventricles of her brain were somewhat enlarged on yesterdays CT scan and that might mean that her cancer had spread to the meninges. He said that an MRI of the brain had been ordered for Monday. Somewhat later, Dr Martin covering for Dr. MacAluso, came in and stayed quite a while (she was quite chatty). She had come by earlier while Eve was in the bathroom and had asked for a catheter to be inserted into her bladder to find out if she was retaining urine (her urination had improved substantially by Sat evening but was worse again on Sun morning – with a long delay before it started – 2 or 3 minutes – and then intermittent flow with spurts lasting several seconds each.). A nurse (Eileen) inserted the catheter about 1/2 hour after Eve urinated and drained about 300 ml of urine which was just above the criterion (250 ml?) for deciding to keep the catheter in because she was not completely emptying her bladder when she urinated. Dr. Martin said that Dr. [K.] had called someone (who??) in Boston on Saturday who said that the ventricles in a previous MRI done there looked normal, so Dr. [K.] had concluded that they had expanded since then and were not merely unusually large all along (as some people’s are). Dr. Martin said that urinary retention as well as Eve’s confusion etc. could be caused by the ventricular expansion. She also said this expansion could be caused by meningeal cancer obstructing the foramina through which the ventricles normally drain. When I asked for any alternative explanation she said it could also be an infection (meningitis?). She said that in addition to the MRI Eve should also have a spinal tap (from Dr. MacAluso) to see what’s circulating in the spinal fluid. From 4 pm to 7 pm I went out – I went to [my studio] to shower & change, to check my mail & email, & to write emails to TF and to my class, canceling my Monday lecture & quiz. Than I went to Eve’s studio to check her mail & feed the cat. When I returned Eve told me that someone (Dr Lee?) had stopped by to see her and had told Eve that she thought that the problem was only an infection. Eve talked to her brother and her parents on the phone and sounded, mostly, like herself.
Monday May 15. Woken by the nurse at 5:45 am, Eve was feeling alert and asked for her computer. We got it set up and she read her blogs and the newspaper online for several hours, taking a break to eat some rice crispies & 1/2 a container of milk & ~1/4 of a roll.
[This is the end of my notes from 2006.]
Looking in the folder labeled “St. Vincent’s Hospital May 2006”, I find in addition to the above notes, a handwritten list, somewhat torn away along one edge, evidently written by Eve, of items for me to pick up when I left the hospital between 6 and 9 pm on Saturday May 13. Eve is evidently pretty alert at this point, although her handwriting looks somewhat jerky.
I also find the hospital discharge instructions, which show that Eve was discharged on May 17 (Wednesday). I see now, and remember noting then, that the discharge instructions are very sketchy and are almost entirely inaccurate in describing Eve’s initial symptoms (high fever [no!], chest pain [no!], unusual bleeding [no!], respiratory distress [OK] [and no mention at all of the mental confusion or difficulty urinating]).
Here’s some more from memory about this event. Eve had the MRI at St. Vincent’s and the person who read it (prompted most likely by the expectations of those who ordered the MRI) saw evidence that the cancer had indeed spread to the meninges (the lining of the brain). This would have been very serious (and perhaps would have called for radiation of Eve’s entire brain) but fortunately it was completely wrong. Not too much later Eve and I went to Boston to have an appointment with Eric Winer (planning for it is mentioned in the above notes) and the MRI was either repeated or reread or both at Dana Farber / Brigham and Women’s. They saw no sign of cancer of the meninges (and in the years that followed it was clear that indeed there was none). We were of course very relieved by this, but the false diagnoses at St. Vincent’s caused us a great deal of unnecessary distress. The overall effect of Eve’s stay at St Vincent’s (the sketchiness of some of the doctors, the wildly wrong discharge papers, the seriously wrong reading of the MRI) combined to convince us to avoid that hospital in the future if at all possible (and as far as I recall we did succeed in avoiding it). This did not affect our confidence in Dr. Goldstein, whom Eve continued to see, or in the St. Vincent’s cancer center, which, as I have noted, was run separately from St. Vincent’s hospital. As I recall, however, Eve’s private room there was quite pleasant, in an old-fashioned way, with a very nice view (as I write this, the hospital — the only one for a large quadrant of Manhattan — has been torn down and upscale condos are being built, advertising the view).
I remember this event as being, initially, terrifying to me. I feared that quite suddenly and entirely unexpectedly, between going to sleep and waking up, I had lost Eve, possibly forever, as someone with whom I could meaningfully communicate. This was a foreshadowing of the time, almost three years later, when I lost Eve again in this way, again temporarily, only a few weeks before her death.
Concern about the stability of Eve’s spine, originating at the time when the cancer’s metastasis to her spine was first detected, had never gone away, and now with the increasing damage to her spine, this concern was intensifying. But the stability of the bone that had been affected by cancer, even if it had partially regrown, was difficult to assess. Our repeated attempts to get a clear answer about the danger of a catastrophic break, which could damage or sever Eve’s spinal cord, elicited vague and sometimes conflicting replies. There was a neurosurgeon at Brigham and Women’s, Dr. Mitch Harris, who was spoken of so highly by the other doctors there that it amounted almost to awe. He was correspondingly difficult to get an appointment with. Toward the end of May 2006 we returned to Boston to meet with him. We hoped to learn something more definite about the risk to Eve’s spine, and about what could be done to reduce it. Dr. Harris had clearly prepared for the appointment. He had studied the images of Eve’s spine and had prepared a detailed plan of how to stabilize it surgically. The plan involved a system of metal bars that he would surgically attach to the bones of the most endangered portion of Eve’s spine. He showed us images of Eve’s spine and of other spines to which he had attached similar structures. The technique was very impressive and clear. Unfortunately, the effects the surgery would have were less clear. He thought the structure would hold but because of the difficulty in assessing the stability of the bone he couldn’t be sure; if there were insufficient firm places to attach the structure then it might fail to hold. Also, the neurological effects were difficult to predict. The immediate aftereffect of the surgery would be serious pain, felt in the areas served by the nerves that would inevitably be somewhat impinged on by the surgery. Usually the pain would diminish with time, but he couldn’t definitely assure us of that; it might not. We asked what would happen if Eve didn’t have the surgery; how likely was it that a catastrophic break would occur? He declined to answer this question; he didn’t know. Overall, this appointment was unsettling. We accepted that he was a highly skilled surgeon and would do as good a job as possible, and we were grateful that he was honest with us, but the necessity of the surgery remained unclear, and there was a distinct possibility that it might leave Eve feeling much worse.
We had also been given a strong recommendation (from Dr. Waltzman, as well as I remember) for a neurosurgeon named Dr. Mark Bilsky at Memorial Sloan Kettering (MSK) in NYC. In mid-June we went to see Dr. Bilsky for a second opinion about Eve having spinal neurosurgery. Our experience with Dr. Bilsky was very different from that with Dr. Harris. Whereas Dr. Harris had impressed us as absorbed in the technical planning of the surgery, with an engineer-like focus on its details, he had seemed somewhat unengaged with the personal effects of the surgery, and detached from the question of whether or not to have it at all. With Dr. Bilsky we never got to the technical planning. He had reviewed Eve’s images and medical records, and he talked to her about her symptoms, her activity level, how she was feeling, and so on. I don’t remember all the details of the conversation, but I remember that I (and we) liked him, that he seemed to be paying attention to Eve as a person and trying to look at the entirety of her situation, and I remember most particularly and clearly his conclusion. “You’re too well,” he said to Eve, “for neurosurgery.” Although he couldn’t rule out the possibility of a spinal break, especially if Eve were to have some kind of accident, he seemed to believe that in the normal course of events, given Eve’s present condition, such an event would be unlikely. This was a great relief to us both. Eve continued to have regular imaging, to meet with Dr. Bilsky, and to be reassured by him for another two and a half years. She never did have the kind of catastophic break in her spine that she had so feared. And I believe that Dr. Bilsky continued to give her considerable relief from the anxiety about it that she had felt for so long.
Shortly after her discharge from St. Vincent’s in mid-May 2006, Eve restarted her third cycle of treatment with xeloda. She then continued having a cycle of xeloda treatment every three or four weeks for more than a year. Xeloda was clearly being significantly effective against Eve’s cancer. Her tumor markers returned to normal levels and imaging showed that the metastases in her liver were shrinking. Beginning with the relief that came from Eve’s first appointment with Dr. Bilsky in mid-June, the remainder of 2006 seems, at least in retrospect, more routine. Eve continued to have regular imaging of various kinds, to meet regularly with her doctors, and to have a variety of symptoms and side effects that required management, but her cancer appeared once again to be under control.
Towards the end of 2006, Dr. Waltzman, whom we both liked and respected, told us that he too was leaving St. Vincent’s, moving into a research position in private industry. So once again we needed to find an oncologist, and a hospital. There was one breast cancer specialist remaining at the St. Vincent cancer center, so Eve could have continued to be treated there, but we had somewhat mixed reports about that oncologist, and we were reluctant, after the experiences of the year just past, to maintain an arrangement in which, if the need for hospitalization were to recur, that hospital would be St. Vincent’s. After consulting with Dr. Waltzman, and with Dr. Winer, we decided that the time had come to give MSK another chance. Eve was already seeing Dr. Bilsky there, so it made sense to us to consolidate her treatment there. We talked extensively with Dr. Winer about the choice of an oncologist from among the many at MSK. Because we were continuing to consult regularly with Dr. Winer, we decided with his gentle encouragement, not to select one of the two most well-known oncologists there. Instead we took his recommendation of Dr. Maura Dickler, a relatively junior doctor whom Dr. Winer knew well and with whom he suggested it would be easier for him to coordinate Eve’s care. At the end of 2006, Dr. Waltzman left St. Vincent’s and Eve transferred her care back to Memorial Sloan Kettering.
Eve continued to take xeloda for the first half of 2007. Again, the double bind created by treatment side effects appeared. The side effect of xeloda that was most troubling for Eve was peripheral neuropathy. It manifested as both a numbness and a painful tingling, to some extent in her hands but more strongly in the soles of her feet, making walking painful and also, because of the numbness, more difficult and dangerous. In an effort to control the neuropathy, Dr. Dickler repeatedly reduced the amount of xeloda Eve was taking. The xeloda had been remarkably effective in controlling and even turning back (in the case of the more easily measured liver metastases) Eve’s cancer, but now her tumor markers began to rise again. Was this because the effectiveness of the xeloda had run its course or because the reduced dosage was less effective? There was no way of knowing, but the possibility that an effective treatment might be becoming unavailable to Eve because of its side effects was painfully frustrating to me. At one point I persuaded Dr. Dickler to try increasing the dosage again, but the brief experiment was unsuccessful. In June, scans of Eve’s liver showed that the tumors there were growing and multiplying again. A new treatment was necessary.
On Dr. Dickler’s advice, we decided on a combination of vinorelbine and avastin. vinorelbine is thought to inhibit the growth of cancer by inhibiting the processes of cell division. Avastin was at that time a new drug, only recently approved by the FDA, whose intent was to starve the cancer by inhibiting the growth of new blood vessels. It was hoped that avastin would increase the effectiveness of the vinorelbine. Avastin was tremendously expensive, approximately $10,000 per bi-weekly dose, so that special approval was needed from the insurance company. As with all of Eve’s medical treatments, however, almost all of the cost was eventually covered by the combination of her and my medical insurance.
Eve went to the MSK cancer center weekly to receive an IV dose of vinorelbine, combined bi-weekly with avastin. The most critical side effect of vinorelbine, however, was that its inhibition of cell growth also affects the body’s ability to regenerate white blood cells, which are an essential component of the immune system. So on every weekly visit to the cancer center, before Eve could be treated, her blood was drawn and her white blood cell (wbc) count was measured. If the wbc count was too low, then her immune system was considered to be dangerously compromised and she was not given the vinorelbine. Vinorelbine also affects the red blood cells (rbc) and can produce anemia if the rbc count is too low. After several months Eve began to also receive epoetin with her treatment. This is a drug that acts to increase rbc levels; it can also cause potentially fatal strokes, however, so has to be used with caution. At the end of 2007, after missing several vinorelbine treatments because of low wbc counts, Eve began taking neupogen, which was intended to increase the wbc, although its effectiveness was uncertain.
Eve continued with this treatment for about 9 months. Although not as dramatically effective as the xeloda had first been, the treatment was moderately effective for much of that time. Eve’s tumor markers were stabilized for a while but then began to gradually rise. Imaging showed that the cancer in her bones appeared to remain approximately stable, but toward the end of this period the disease in her liver began to progress again. Dr Dickler said that it was time to try a new treatment.
In April of 2008, Eve began treatment with exemestane. Like avastin, exemestane acted to suppress estrogen levels. Eve had stopped taking avastin because its estrogen suppression had lost its effectiveness against the cancer. Several years had now passed, and the idea, as far as I recall, was that suppressing estrogen might over time have recovered some of its effectiveness against the cancer. Also, exemestane acted by a somewhat different mechanism than avastin, so the cancer might be less adapted to its effects.
The side effects of exemestane were relatively mild, and it had the advantage of being taken orally and so did not require the weekly visits to the cancer treatment center. The effects of the exemestane were not dramatic. As I have said earlier, it is a typical pattern in the treatment of metastatic breast cancer that successive treatments tend to be decreasingly effective. Although the exemestane may have somewhat slowed the progression of Eve’s cancer, her tumor markers continued to gradually rise and scans in late July showed some slow progression in her liver and bone disease. The decision was made, however, to continue the treatment for another couple of months and then to do further scans.
Functionally, Eve’s health remained moderately good during the period extending through 2007 to near the end of the summer of 2008. Her peripheral neuropathy had abated although it had not gone away altogether. Her osteonecrosis had gradually cleared up. Her blood pressure was marginally under control. Her energy level was diminished but not incapacitatingly. One indication of Eve’s health can be seen in our travel during that period. In addition to short domestic trips, such as several trips to Bethesda to visit Eve’s parents, during 2007 we travelled to Seville in May, to London in June, and to London and York in October. In 2008 we travelled to Amsterdam and Leiden in April, and to Bordeaux in June. On each of those trips Eve gave one or more talks based on recently written papers. We also vacationed, taking a barge trip in the south of France as part of our October 2007 trip, spending a week with Eve’s brother and his family on Edisto Island in South Carolina in January 2008, and spending several days at a chateau in the wine country as part of our trip to Bordeaux. I recall that on our trip to Bordeaux we had to change planes in Paris; we were late getting into Paris and had to walk about a mile through the airport, at a fairly fast pace, in order to catch our connecting flight; I was impressed then that Eve could manage that walk (although it was a challenge for her; on the return trip, we requested a wheelchair to help her make that long trip through the airport). In July, 2008, we drove to Amherst to take part in amateur theatricals there (Eve created the program for the performance); that was the last trip that we took for Eve’s work or purely for pleasure.
Toward the end of the summer in 2008, the gradual progression of the cancer in Eve’s bones became more painfully and disruptively symptomatic. During August, pain in Eve’s shoulder and hip worsened. After numerous consultations at MSK, Eve began two courses of radiation treatment. The first, for which the radiation oncologist was Dr. Kaled Alektiar, was a course of standard radiation; it consisted of 10 daily sessions of radiation to Eve’s hip to attack the cancer there.
The second course of radiation was more complex, the pain in Eve’s shoulder arose from recurrent cancer in the part of Eve’s spine that had been treated with radiation at Duke. Because of the need for great caution in re-radiating that area, the use of IGRT (image guided radiation therapy) was once again indicated. This treatment was now available at MSK, under the supervision of Dr. Josh Yamada. Unfortunately, there was an almost six-week delay before MSK obtained an okay for this treatment from the insurance company and further delays as Dr. Yamada then did his treatment planning.
These delays were intensely frustrating because imaging in September had shown that the exemestane was no longer being effective. Dr. Dickler recommended that Eve switch to a more aggressive form of systemic chemotherapy, but Eve was not able to begin this chemotherapy until she had completed her radiation treatment. Thus she was left without any effective systemic treatment for several months while her cancer was progressing.
Toward the end of November 2008, Eve began treatment with abraxane, a new and very expensive drug that was intended to disrupt the cellular growth processes of the cancer. Evidence for abraxane’s effectiveness, relative to its risks, was limited, and it had only been approved for use in metastatic breast cancer that did not respond to other forms of chemotherapy.
Retrospectively, there is not much reason to think that the IGRT was effective. Because it was re-radiation, it had been planned very conservatively, to avoid the danger of impinging on the spinal cord; as a result it may have had little effect on the cancer tumors that were beginning to impinge on the spinal canal. Likewise, the abraxane proved to be ineffectual. During the ten weeks or so that Eve was being treated with it, her tumors markers continued to rise, reaching levels far above what we had seen before. Early in February, Dr. Dickler requested more imaging (CT plus PET), which showed that the cancer was spreading in Eve’s bones as well as in her liver. Dr. Dickler decided to try changing Eve’s chemotherapy again, this time to an older agent called Doxil.
The fall of 2008 was a difficult and painful time for Eve. Yet, despite the continued worsening of Eve’s condition, as shown by the clinical measurements of her cancer, she felt somewhat better around the turn of the year. This may have been because the standard radiation to her hip had been effective, making it less painful for her to walk. We were able to make a short trip to Bethesda at the beginning of January 2009. Eve continued to teach, to see friends, to do some writing, and to make plans for more writing and travel in 2009 and beyond. We did not yet know that her doctors had, effectively, run out of options.
Part IV Eve’s final illness
I have always known
that I would take this path,
but yesterday I did not know
that it would be today.
There are many possible dates for the beginning of Eve’s final illness. One is Sunday, February 8, 2009. She had been walking to the bathroom and found herself walking unsteadily ‘like a drunken sailor.’ After having a similar experience on Monday, she told me about these experiences. In the weeks prior to that she had been doing pretty well. The autumn had been very difficult but she had gotten through that and January had not been bad. She had felt well enough for an ‘at home’ for a dozen people on New Year’s Day, a trip to Bethesda, and several meals out with friends. Toward the end of January, we celebrated my birthday with lunch (lobster rolls) at the Blue Water Grill, a short walk from Eve’s studio.
She had been receiving a chemotherapy treatment (abraxane), one of whose prominent side effects was peripheral neuropathy. Her feet were already numb from previous chemotherapy (xeloda) and I interpreted her unsteadiness as being due to increased numbness in her feet. I got out her cane and looked up on the internet the right way to use it. We practiced that and I encouraged her to use it to steady herself while moving around her studio.
On Tuesday, February 10, we went to MSK for her to have hip x-rays and see Dr. Boland, a specialist in orthopedic oncology, as a follow-up to the hairline fracture and radiation treatment she had in the autumn. As far as I remember we had several concerns — her ‘pelvic girdle weakness,’ probably caused by steroids she had been given to reduce bone pain, and her concern about the possibility of femur fractures due to years of xometa — but although she was using the cane I don’t think we mentioned the unsteadiness (presumably because I was attributing it to the peripheral neuropathy). Eve’s primary complaint was a sharp pain that she sometimes experienced mid-spine when she straightened up. It was a long wait to see Boland. When we did see him, he was concerned that the pain might be a sign of instability in the spine. We told him that Eve had recently had imaging of her spine, and he went off to study the images. On his return he reiterated his concern and said that he would schedule Eve to be discussed by their ‘spine board’ on Thursday. He explained that the various spine specialists (himself, Lis, Bilsky, Yamada, and maybe others) spend some time together every Thursday morning going over selected cases to discuss how best to treat them.
Thursday, February 12, we went early to the MSK Breast Center (located in a building several blocks away from their main hospital) to see Eve’s medical oncologist (Dr. Seidman was filling in for Dr. Dickler) and for her to have her first treatment with the new chemotherapy (doxil). During the long morning there we got a message that Dr. Bilsky would like to see Eve at his office at the main hospital after her treatment. We took the MSK shuttle over there and got one of their wheelchairs for Eve, to make it easier (more stable and less tiring) to get around. Bilsky told us that the spine board had examined Eve’s record that morning and had concluded that there was no treatment that they could offer her now. He further explained that, although the epidural tumor in her spine was pushing on the spinal cord, he did not think it was advisable to do spinal surgery because, although he could do it, there was some chance that the bones were now too fragile for it to hold, which would make things worse than before. He said he knew that Eve was beginning a new chemotherapy and he prayed that it would work; the implication was that it was the only treatment option available to her now.
Dr. Bilsky’s sudden withdrawal was completely unexpected by us. Although we certainly had been hoping to avoid spinal surgery, and had great faith in his judgment, because acting on his advice Eve had avoided surgery for almost 3 years, we had relied on surgery as an option that Eve could fall back on when it was really needed. In the waiting room afterwards, Eve in her wheelchair was crying and I tried to comfort her, saying that although Dr. Bilsky didn’t advise surgery now, if the chemotherapy worked and her situation improved, as had happened before, then surgery, if needed, might be possible sometime in the future. Although I was trying to find a way around it, I think we both had the unspoken sense that this was a milestone in her illness, that options had been permanently foreclosed, and that the end that we had known of for so long, but had again and again managed to put off, sometimes almost with the sense that it could be put off indefinitely, was now in sight. This was 2 months before Eve’s death.
Still, we carried on. The next day, Friday, our friends Michael Moon and Jonathan Goldberg came into town and came to Eve’s studio for drinks to be followed by dinner out, but because of Eve’s increasing difficulty in getting around we ordered in. Saturday, though, we got a taxi and went to the Upper West Side apartment of Jon’s cousin Sylvia and her husband Julian for dinner with them and with Mike and Jon. Sunday, February 15, my sister Edith and her husband Cal came into town (on an Elder Hostel trip), and on Tuesday they came to Eve’s for drinks and appetizers to be followed by (their anniversary) dinner at the Union Square Cafe. Eve wasn’t up to going out, however, so she stayed home.
During this time, the Spring semester had started at the Graduate Center, and Eve’s year-long Proust seminar had resumed. The first meeting was Wednesday evening, January 28, from 6:30 to 8:30. This was preceded by her office hour (from 4 to 7) on Tuesday. (She had moved her office hour to a different day of the week because having both on the same day had become too tiring for her and she felt that it detracted from her seminar teaching.) The first few weeks no one came to her office hour, but she insisted on going anyway (I wanted her to do it only by appointment) because she wanted to be there in case someone dropped in and also, I think, because she felt that being at her office hour was part of her responsibilities to the Graduate Center, and not having many such responsibilities that required her presence there, she felt that it was important to be diligent in fulfilling this one.
Eve had a comfortable armchair to sit in during her office hours, but because of the pain and tenderness in her spine, she was increasingly uncomfortable sitting in a straight-back chair. Her seminar room for the Spring semester was just down the hall from her office, so I enlisted the help of one of the other students for the first meeting and we carried her armchair to the seminar room (after that I found it was easier for me to just drag the armchair back and forth by myself). This worked well except that it was noticeably too low for the seminar table. Right from the beginning of the semester, then, with Eve reclined in her armchair and her head below eye level, it was apparent that something about her situation was different.
Another thing that was different about Eve at the beginning of the Spring semester was that she was wearing a wig. In 1991, when Eve first had breast cancer, and after she had recovered from her surgery, she had six months of chemotherapy. One predictable side effect of that chemotherapy was that she lost her hair. This was deeply traumatic to her — her beautiful long golden-red hair was an essential part of her image of herself. We bought a wig for her at that time, but she didn’t like it and didn’t wear it. Instead she acquired an amazing variety of wonderful hats and wore them whenever she was in company. When Eve’s cancer returned in 1996, it was treated for many years with hormonal therapy, which does not cause hair loss. When hormonal therapy was no longer effective, it was necessary to turn to chemotherapy, but the first chemotherapies that Eve was treated with, although they had other serious side effects, also do not cause hair loss. Then toward the end of 2008, when it appeared that another chemotherapy was needed, the one that was selected was abraxane, which is known to cause hair loss. Eve determined to try a wig again, but to get the best one possible. We both did online research, and then we visited two places in Manhattan before selecting Joseph Paris, who makes custom wigs for women with hair loss. He carefully matched the hair colors in the wig to Eve’s own and measured her hairline, which was then reproduced in the wig. When the wig was ready, Eve’s own hair was cut very short, and a stylist trimmed and styled the wig while Eve was wearing it. Then after trying it for a while she returned and had a further trim and styling. All this was expensive (about $2500) but it resulted in a wig that Eve was happy with and was confident wearing. We were both very happy with this and felt, I believe, that we had largely circumvented a recurrent trauma about hair loss. Eve did not wear the wig when she was home with only me, close friends, or the health care workers, but whenever she went out or had company, she wore it. It was ready just in time for the beginning of the Spring semester and Eve wore it to the first seminar.
Eve in the past had usually taken the bus to and from the Graduate Center (or had occasionally walked) but because it was winter and because she had increasing difficulty getting on and off the bus I was reluctant for her to do it alone. So for her office hour and for her class I scheduled a car service to take her to the GC, then I came home with her, either by bus or taxi. The third week of classes, Eve went to her office hour on February 10 using a cane to stabilize her walking, but it was not very successful and seemed dangerous. She was increasingly unstable and complained of numbness in her lower legs and increasing weakness in her legs. She already owned a walker and started using that at home. On February 11 she went to her seminar, this time using the walker. I had not attached wheels to the walker, although Eve had requested them, because I was afraid that it would be unstable, but this meant that Eve had to lift the walker to move it forward on each step. It was a long slow trip to the car, to the classroom, and back, and the following day Eve had serious pains (in her shoulders as far as I remember) that were probably caused by using the walker. So I installed the wheels, which made it easier to use. I also bought a narrower walker because the standard size was too wide to get into the bathroom at her studio. And I bought some support bars to install on the toilet so that she could transfer from the walker to the support bars and sit down. But her legs continued to weaken. It was apparent that the underlying cause was most likely the tumor pressing on her spinal cord rather than numbness caused by chemotherapy.
I went to Bigelows (upstairs) and bought a ‘transport chair,’ a small collapsible wheelchair that would fit in the trunk of a car. We used the transport chair several times. I believe Eve skipped her office hour on February 17, but she went to her seminar on February 18 and sat in her transport chair throughout the seminar.
On Thursday, February 19, I was at SUNY talking to a colleague, who was about to give a noon colloquium, when my cell phone rang. It was Eve, calling from her studio; she had fallen and couldn’t get up. I went there immediately. Eve had slipped out of her computer chair because her legs were too weak to support her properly; she hadn’t fallen far and wasn’t injured but she didn’t have the strength in her legs to get up. I didn’t have the strength to lift her up but between the two of we maneuvered around until we could get her up and into her chair.
Over the next few days she fell twice more. Once she was sitting on the side of the bed and slid off; the other time I don’t distinctly remember. Both times she was uninjured and together we got her back up, although with difficulty. On Monday, February 23, she had to go to MSK to have a brain MRI. Dr. Seidman had ordered it because of the numbness in her feet, although he said he thought it was unlikely that was due to a brain problem (it wasn’t). I took her to the car in her transport chair and then she transferred to the seat of the car, but because the car door was in the way I was unable to help her and she barely avoided falling.
On Tuesday February 24, Eve fell twice at home. We were trying to do transfers between the bed (or one of her comfortable chairs) and I was unable to prevent her from sliding to the ground. The first time she fell we managed to maneuver her back up. The second time was late in the evening, around midnight, and we simply couldn’t do it; Eve had little strength to try. I went downstairs to the front desk in her building and Sam (or Angel) came back up with me; between the two of us we were able to get her back up and into bed. Late that night I wrote an email to Michelle, Dr. Dickler’s oncology nurse at MSK, explaining the situation and asking for help.
After Monday, February 23, I decided that doing transfers from the transport chair to the car was too risky and that we needed a vehicle that would allow her to stay in her chair throughout the trip. This was not easy to find. I called a few ambulette services and found out that even a round trip to the GC, less than a mile away, would cost over $500. Then I found online that there were some wheelchair accessible taxis and that NYC had recently started a dispatch service for them. This sounded like a perfect solution so I scheduled one to take Eve to her office hour and back the following day. On Tuesday I took her downstairs in her transport chair at the scheduled time but there was no taxi. I called repeatedly but after an hour there was still no taxi nor any promise of one, so I took Eve back upstairs and we cancelled her office hour. After further phone calls it became apparent to me that this taxi dispatch service was largely ineffectual. There were only a few wheelchair-accessible taxis in the city and none in central Manhattan. Whether they answered a call or not was voluntary, and it wasn’t worth their time to drive into Manhattan and transport someone for an ordinary taxi fare.
On Wednesday, February 25, we still had no solution to the transportation problem so Eve stayed home and I went to the seminar by myself. We also cancelled going to see the ‘Dollhouse’ with our friends Wayne and Steve on that Friday because we had no secure way of getting to Brooklyn and back.
My memory is patchier now than when I wrote the previous section. I don’t quite recall how we got through the remainder of that week. Eve didn’t go out. At some point I went to Bigelows and bought a portable toilet for her. That way she could transfer directly from bed or from her transport chair to the toilet. I remember that Michelle responded to my email by connecting me with the Visiting Nurses (VN). An appointment was scheduled with a nurse, to do an assessment, and with a physical therapist to help with the transfers. The physical therapist came and tried to show me how to hold Eve to support her during the transfers (such as from her bed to the transport chair). As I remember, this involved some fashion of reaching around under her armpits to hold her. I think this was on Friday February 28. That evening Eve had very bad pain in her shoulders. They had already been stressed by her efforts to haul herself out of her chair and were, it seems, further traumatized by the way the physical therapist was lifting her. I gave Eve her regular pain medication but also a dose of her medication for breakthrough pain as was prescribed for such situations. I don’t remember the night well, but think we both slept until early in the morning when I woke up. Then I found that Eve was sleeping very heavily and I couldn’t rouse her (I don’t remember how hard I tried). I think I remember being concerned but hoping that she would sleep it off. I had been concerned about the difficulty of helping her get up to pee and so, as I remember, I slipped out early to go to Bigelow’s to get a plastic jug designed for women to pee into. When I returned, I tried to wake Eve again, but was unsuccessful. She would rouse a little but made only incoherent sounds and then went back to sleep. I became seriously alarmed (it reminded me of the earlier episode when she had become mentally incoherent and had spent several days in St. Vincent’s hospital). As far as I remember I called Urgent Care at MSK and they sent an ambulance for her. This was Saturday, February 28.
Eve spent 10 days in the MSK hospital. She was transferred to a room late on the night of the 28th. I had inquired about staying with her and was told that the only way I could do this was to pay $500 per night for a private room, so I made those arrangements while she was still in urgent care. I stayed with her the entire time, only leaving twice, as far as I recall, to make brief trips home. I don’t remember Eve’s time at MSK in detail now (although I may have notes somewhere). Here are a few things I remember. Eve’s mental coherence fluctuated. After a few days in the hospital she returned pretty much to normal but a few days later she regressed a bit and then recovered again before we went home. They did numerous tests but couldn’t find anything distinctly the matter that would account for her condition. I came to think it likely that her mental condition was linked to dehydration. She recovered when she was on hydration therapy, deteriorated when taken off of it, and recovered again when it was restored. Also, she had a catheter in place so that I could see the color of her urine in the bag and could judge how well hydrated she was from that. [Eve had always consumed large quantities of iced tea or ice water all during the day but I observed — I don’t remember when I first noticed this — that although she always had a large mug by her side she was actually drinking much less. After she returned from the hospital I encouraged her to drink more but with little success.] I was unhappy about aspects of her treatment at MSK. Her own oncologist, Maura Dickler did not see her; instead she was seen by the oncologist who was on rotation at the hospital that week, a woman whom I came to like not at all. At the hospital the leading idea was that Eve had overdosed on her pain medicine, and their response was to take her off of pain medication entirely. This left her in some pain continuously and made it very painful when the nurses’ aides tried to roll her over so that they could change the linens and clean her. The hospital system was unresponsive; the attending doctor came through on rounds briefly in the morning, and it was very difficult to get anything done for the rest of the day. I did finally get some degree of pain medication restored and Eve was more comfortable after that.
While she was in the hospital, she was seen regularly by physical therapists who taught her some exercises to strengthen her legs and who helped her out of bed and into a wheelchair so that she could sit up for a while. We wheeled around the halls on her floor and went up to the recreation floor once or twice. The length of her stay was in part caused by the weekend that came at the end of it, and was in part caused by the recognized need to set up some system for her care when she went home. Her legs had weakened to the point that I was not competent to make transfers with her although the physical therapist could. The physical therapists had the idea, as I remember, that Eve should not go straight home from the hospital but instead should go into an institutional setting where she could have professional physical therapy. As I learned more about it (I had gotten my laptop computer from home), it became apparent that Eve could not go into a full-strength rehabilitation center because the demands of therapy in such centers are more than she could handle. Instead she would need to go into what’s called a sub-acute facility which has, as I recall, one hour a day of physical therapy (5 days a week) and perhaps an hour a day of occupational therapy. Eve was initially positive about doing this. She was willing to devote the time to trying to build up enough strength to regain her independence of movement. As I looked into it more, however, there were considerable drawbacks. The available facilities seemed to be in what were basically nursing homes, where Eve would have to be in residence 24 hours a day in order to receive her 2 hours of therapy; although I could visit her during the day, it appeared that I would not be allowed to stay with her during the night; and it seemed that the typical stays in such places were measured in months rather than being a few weeks as Eve and I had initially imagined. Also, it seemed that we could approach the same level of therapy at home through the Visiting Nurses. Finally, although I’m not sure I said this to Eve, I was concerned that if her condition continued to worsen due to increased tumor pressure on her spinal cord, no amount of effort put into physical therapy for her legs would be helpful. After we discussed what I had learned, Eve decided not to pursue the acute-care option, but to go straight home instead.
This required that a support system be in place as soon as she went home because I could no longer manage without it. In particular we needed a hospital bed for her, a real wheelchair, and a mechanical lift that could be used to get her out of bed and into her wheelchair or onto the toilet. And I needed some advance training in using the lift. These lifts are sometimes called Hauer lifts, although not all of them are made by Hauer. They had one at the hospital, and the two physical therapists demonstrated its use to me several times. Eve had to roll over in bed so that a fabric sling could be placed under her. This was fastened by chains to an overhead arm of the lift that could then be elevated by a manually operated hydraulic pump, lifting Eve out of bed and suspending her in the air. The lift was on wheels so that she could then be positioned over the wheelchair and lowered into it. The lift obviously had to be used with great care so as to avoid any possibility of dropping her, but apart from that was not difficult to use. The therapists were insistent that two people were needed to operate it, but I found a home video on YouTube in which a man demonstrated how either he or a helper could use the lift by him- or herself. Subsequently, I used the lift at home by myself without much difficulty. I was the only person who used it at home.
Toward the end of Eve’s stay at the hospital we had two visits from Nessa Coyle, a nurse practioner and PhD who, I later learned, has been a pioneer in palliative care, going back to 1969. She seemed like a wonderful person. The first time she came into the room Eve was sleeping so she stayed for quite a while talking to me about hospice and palliative care. Then she came back the next day when Eve was awake and talked with both of us. She was very kind and helpful.
I don’t remember Eve having any visitors while she was in the hospital, although she may have had some. But on Tuesday, March 10, which was the day that she was discharged, Michael was in town and came to visit. This was very helpful because that morning was also the beginning of my teaching obligations that Spring. Michael sat with Eve while I went to give my lectures. Then in the afternoon I returned to the hospital and Eve and I were taken to her studio in an ambulance. I had already had the equipment delivered so it was there when we arrived. Eve was then home for just a month. It was to be Friday, April 10, when she was taken to the hospice at Beth Israel.
This was a difficult month. Eve was approved for four hours a day, five days a week of home care from a home health aide, but this proved to be of limited usefulness. The first day the aide didn’t show up. I then learned that, although in principle I could vary the hours on a day-to-day basis, the only way to get the same person for an extended period was to have them come for the same hours, either the morning or the evening, every day. This was because they were also scheduling other appointments for the other part of the day. The second aide seemed competent but intent on doing no more than she was asked; then she left after a few days to return to a previous patient who had been in the hospital but was now home again. The third aide seemed willing but was very limited in her competence so that there was little for her to do. None of the aides wanted to have anything to do with the Hauer lift and I wouldn’t have felt that it was safe for them to use it even if they had been willing. None of them could do any kind of medical care, such as wound care, and the third aide, who was with us the longest, was reluctant even to help with washing Eve or moving her in bed and wasn’t very competent even in changing the sheets and making the bed. I learned only at the very end of the month that the aides were paid so very little (maybe $7 per hour) that it was unrealistic to expect more from them and that I should instead have used private hires, for which I received a number of recommended names.
Visiting Nurses assigned the same physical therapist that Eve had seen before going into the hospital, but he had hurt her so badly then that she, very reasonably, refused to see him again. She did see an occupational therapist, however, who came a number of times, helped her with exercises, and taught her exercises to do on her own. This was of limited use because Eve’s legs continued to weaken. Although initially she could lift her legs and move them while she was in bed (although they were not nearly strong enough to bear her weight if she had tried to stand up), she could do less and less over time and after several weeks could do not even move her toes. At this point the therapist said that he really could not justify further visits to the insurance company and so he stopped coming. A social worker paid one visit. I remember that she gave me some useful information but I don’t remember now what it was.
All of this care was managed by the visiting nurse, who came several times a week for what was often a quite brief visit. Initially she seemed to spend most of her time filling out paperwork to justify further visits. Later she seemed more attentive to Eve herself, but it seemed to me that some problems that developed could have been prevented or at least lessened if she had been paying closer attention initially.
For these last two months of Eve’s life, her bowel functions were a persistent problem and became a preoccupying one for Eve. There were two reasons for this. First, her pain medications tended to make her constipated, and second, as her mobility lessened, it became harder for her to get to the toilet. It was frustrating. Because such functions are not entirely voluntary she would want to have a bowel movement and sometimes feel that she could, only to find, after we had gotten her to the toilet with considerable difficulty, that she could not. She was already constipated when she went to the MSK hospital and became even more so while there. Finally, sometime in the middle of her stay, she had a more effectual nurse, who gave her what was needed to induce a bowel movement while she was in bed and literally helped to scoop out the blockage. By the time Eve left the hospital though she was becoming constipated again. The Hauer lift provided by the insurance company came with two slings, one of which had a hole in it to allow it to be used on the toilet. The problem, however, which only became apparent over time, was that the edges of the hole were abrasive so that the pressure on Eve’s bottom, when she was suspended in the lift began to create wounds along the line of the hole. The visiting nurse finally noticed these and became quite worried about them, because of the fear of infection, but treating them was difficult because Eve was lying in bed much of the time. The problem of constipation was now aggravated because I was afraid of using the toilet sling for fear of further injuring Eve’s legs. I ordered another sling that seemed as though it might be better, but when it arrived it was skimpier than advertised and I was afraid to use it for fear that Eve might slip out of it. Dr. Bilsky had visited Eve in the hospital and had confirmed that Eve’s gradual loss of leg function was due to the tumor pressing on her spinal cord. When I asked him about the course of this, he had said that Eve would eventually lose all use of her legs and eventually also lose control of her bowels but that this would be the last to go. This did happen, sometime around her last week at home, and after that constipation was no longer a problem. Her bowels moved on their own, while she was in bed, and then the aide or I cleaned her.
We had requested and received a good wheelchair from the insurance company. It had a reclinable back, a good headrest, and good leg supports, which could be elevated. It also seemed that Eve could maneuver it herself. Our intention was that Eve could sit for extended periods during the day and could sit at her computer in her wheelchair and do her work, email, and so forth. Also, she could sit in her wheelchair to receive company. During the week that Eve was in the hospital, she had to cancel her office hour and to miss her seminar (which went on without her, guided by two of the students, who served as facilitators). It had already occurred to us, however, that after Eve returned home it would be easier for her to meet her students at her studio than to go to the Graduate Center. Her students were willing to do this. So for three weeks, on Wednesday evenings, March 11, 18, and 25, Eve held her Proust seminar at home. This worked reasonably well. Before the seminar I would hoist Eve out of bed and into her wheelchair, help her get somewhat dressed (in a nice top with a lap robe over her bed gown and catheter bag), and help her put on her wig. Then I would wheel her into the living room and shut the door to the other room which had the hospital bed and equipment in it. As Eve had already arranged, each class had two students facilitating and she could add her comments whenever she wished. I bought beer and soda and ordered in pizzas from Patsy’s, so the gatherings were congenial.
Part of the difficulty of this period was that I was teaching two courses at my college, which was making a transition from the quarter system to the semester system that required me to be teaching my visual perception courses under both systems concurrently, requiring lectures on Monday, Tuesday, Wednesday, and Friday. Sometimes the home health aide was there during the time I had to be away, but sometimes not. At first I thought I could set Eve up in her wheelchair and then leave for a few hours to lecture (I don’t remember now how often this happened) but I eventually came to think that this was not safe even though Eve and I both had cell phones. Then I had to arrange for someone to be with Eve while I was away. Eve students and friends Claudia and T were both very helpful in volunteering to do this. Her brother David also came to visit for several days shortly after Eve got out of the hospital and was very helpful in this and other ways.
My focus during the first part of this period, and Eve’s too I think, was on learning to live with the lift and the wheelchair. Eve ordered several books about people with disabilities and did some online research about electrically-powered wheelchairs. She didn’t go out very much, but I did take her out a few times (I don’t remember how many) just to wheel around the neighborhood. On March 17 we wheeled down to Dr. Goldstein’s office on 5th Avenue at 14th Street for Eve to have a checkup with him following her stay in the hospital. This was quite convenient.
Getting to MSK was much more of a problem. I had discussed this with the social worker while Eve was in the hospital. It seemed that there were only two options. The first option was the NYC Access-a-Ride program. This program would send a wheelchair accessible van for the cost of a bus token. The problem was that the program required going for an interview and there was an almost two-month wait for the interview. We (David, I think) did schedule such an interview, but Eve died before her appointment. The other option was an ambulance service, whose name the social worker gave me, that was willing to make round trips to MSK, as non-emergency transportation, for ‘only’ $200 round trip (which was not covered by insurance). On Monday March 23 we used the ambulance to go to MSK for an appointment with their pain management specialist, Dr. Tickoo. Although this seemed like a worthwhile contact to have made, the transportation was expensive and cumbersome. On Friday, March 27th, our friend Adam Frank came to visit. I got Eve dressed up and into her wheelchair and we all wheeled down into the West Village where Adam treated us to falafel. It was pleasant weather and we had our food out on the sidewalk because the little shop wouldn’t comfortably accommodate Eve’s wheelchair. This was a very pleasant excursion. It also marked the end, although we didn’t know it yet, of our attempt to construct a version of a normal life out of Eve’s situation.
During this time after Eve came home from the hospital, she had little appetite for food or beverages. I was concerned, as mentioned above, about her becoming dehydrated and did what I could to encourage her to drink more, but to little effect. Whether because of dehydration, or for other reasons, or both, beginning on Saturday, March 28th, Eve had a significant loss in her ability to express herself verbally. The symptoms were frustrating, both to her and others. Her voice sounded normal and expressive and she appeared to be alert and cognitively clear but she couldn’t find the words she wanted and often substituted unclear non-words in their place. Many rote or spontaneous expressions were perfectly fine but it seemed that just when she came to the crux of what she wanted to say, she couldn’t. I can’t remember clearly enough to do justice to the complexity of her condition. Sometimes I wasn’t sure how clear she was cognitively. Adam came to visit for a while on that Saturday and sat with Eve for some time. He later described her as seeming absorbed in an elaborate fantasy about having a bowel movement. This aphasic condition, if that’s the correct term, fluctuated somewhat in intensity over the following days, and sometimes for short periods Eve’s ability to converse seemed almost normal, or at least enough so to have a conversation, but mostly it was not.
There were heart-breaking moments. T tried producing a vocabulary of pictures (food, beverage, etc.) that Eve could point at to convey her meaning, but this didn’t help. Then T gave Eve a pencil and paper and Eve tried to write but produced only a scribble. Eve’s mother Rita came from Bethesda to NYC, staying with her sister Elaine in Queens, and they both came to visit Eve. On April 5th, I think, with all of us sitting by her bed Eve launched into an animated story about Claudia (I think it may have been about her being a rock star) that went on for some time but was an incomprehensible mix of words and non-words. When she finished she looked at us and it was clear that we hadn’t understood. Then she expressed her frustration, exclaiming plaintively and perfectly clearly “I tried so hard.”
Eve had had her second chemotherapy treatment with doxil while she was in the hospital. She had had an appointment for it at the breast center, but I contacted Dr. Dickler’s office and then spoke to Dr. Dickler on the phone to arrange for the treatment to be given at the hospital. At that time Dr. Dickler shocked me by saying something, I forget her words, that suggested a doubt as to whether it was worth continuing with the treatment. She said something about Eve not being able to walk, which I then took as implying that if you can’t walk then life is no longer worth living; I don’t remember just what I said in reply but I rejected that implication. I replied that Eve had just started the new treatment so that it was too early to know if it would be effective. Dr. Dickler then gave her consent for the chemotherapy in the hospital.
On Monday March 30, Eve had an appointment at the MSK breast center to see Dr. Dickler and to have her third doxil treatment. Again I hired an ambulance to take us there. It was a long day and I’m not sure now that I remember the sequence of things, but this is how I recall it. Eve had her blood drawn and then we waited to see Dr. Dickler, but there was a long delay. Eve also had an appointment to see Dr. Massie, the psychiatrist. She had been feeling some time before that she wanted to boost up her antidepressants and so had scheduled that appointment, which was in a different MSK building, with a wheelchair accessible shuttle that ran between them. Eve was scheduled to see Dr. Massie after Dr. Dickler, but because Dr. Dickler was delayed, we went to see Dr. Massie first, going to the other building by shuttle. Dr. Massie came out to the waiting room to greet us. I asked whether I should come in too, and she said she would prefer that I stayed in the waiting room, which I did. Presumably she found that she couldn’t communicate well with Eve, so she came back out and asked me to join them, which I did. I don’t remember now what was she said although I remember her being sympathetic.
We then took the shuttle back to the breast center and, after a long wait, saw Dr. Dickler. She said that Eve’s blood counts were too low for her to have chemotherapy that day. She went on to say that she didn’t think further treatments would be helpful to Eve. She said that she thought the blood counts were low because the cancer was destroying the bone marrow and so limiting Eve’s body’s ability to regenerate the blood. She said that, although she didn’t think it would help, she could, if we wanted, try a gentler chemotherapy, but Eve would still have to wait a while (a couple of weeks perhaps — I don’t exactly remember) to see if her blood counts recovered enough.
This was clearly the definitive moment of being told that Eve was dying: the moment when the doctor says or clearly implies that it’s time to switch from treatment to hospice. We had known that this moment would come eventually. I had thought, I guess, that it might come if the current chemotherapy, after several more treatments, proved to be ineffectual. But it came sooner than expected and took me by surprise like a physical blow. I had difficulty speaking but asked, without quite saying what I meant, if Dr. Dickler had an estimate of how long. She clearly knew what I meant and replied “a few weeks, maybe a few months.” She was right; Eve had less than two weeks to live. As far as I remember, I believed at the time that Eve understood the meaning of what Dr. Dickler was saying. I can’t remember if Eve said anything then or what I said to her. It was a hard moment. The ambulance took us home.
At home I thought about who else to consult. I thought of Dr. Chang but had found in the past that he was unwilling to be consulted without an actual appointment and visit which would have been difficult, requiring an ambulance again to get there and back. I thought of Eric Winer, but he was not closely acquainted with Eve’s current situation and so couldn’t be expected to offer an opinion without seeing her in Boston, which wouldn’t be possible. And I thought of Dr. Goldstein, whom I called. I left a message and he called back in the evening (it might have been Tuesday or even Wednesday). He too took me by surprise, saying that when he had seen Eve after she got out of the hospital he had thought then that she was dying and probably had only a few weeks to live; but he hadn’t said anything then, preferring to wait until we saw Dr. Dickler. This independently-reached agreement between Dr. Goldstein and Dr. Dickler convinced me, and I didn’t seek any additional consultation. It seemed to me later, when I thought about it, that physicians experienced with dying patients may have learned to perceive signs of death’s approach that are not evident on tests, and perhaps are not even articulable to themselves, but which, nevertheless, are clearly evident to them.
One evening, after my conversation with Goldstein, I spent several hours searching the web for information that might help me understand Eve’s prognosis. I learned that medicine is divided (at least by some researchers) into three branches — diagnosis, treatment, and prognosis — and that prognosis is considered to be the least developed of these branches. There is a great deal of statistical information about disease progression in populations, which allowed Eve’s doctors to tell her, when her breast cancer metastasized, that the average life span in that situation was two to three years, but much less information that allows confident prognosis to be made on an individual basis. Some doctors, perhaps the better ones, will venture an intuitive prediction (Eric Winer, at that time, said something like “I have a feeling you’re going to be around for a long time”); others will not. Doctors may be more willing to share an intuition if it’s positive than if it’s negative. Dr. Goldstein, as he said, had an intuition about Eve’s approaching death but refrained from mentioning it until the specialist had spoken.
I also learned, that evening, that those few researchers working on prognosis had found different typical patterns with different mortal diseases. Some diseases (I think heart disease is an example) follow a pattern with abrupt changes — a person may go from apparent good health to death in minutes or may be almost dead and yet recover good health. Metastatic cancer was described as a disease with a more gradual pattern — patients may stay for some time (years in Eve’s case) on an uneven plateau, having ups and downs but still able to maintain some approximation to a normal life, but then they begin an irreversible slide downhill and reach the end within a few weeks or months. It is this pattern, which I had not previously read or been told about, that Eve seemed to be following. Drs. Dickler and Goldstein, with their experience, were presumably able to discern that downhill slide, while I was unable to distinguish it from a depression in the plateau that Eve had occupied for so long.
I had gotten some advice about hospice programs from both Dr. Dickler and Dr. Goldstein and set out to learn more about them and to decide which of the available ones would be best for Eve. I didn’t have a sense of great urgency because it seemed that what the hospice programs offered at home was not much different from what the Visiting Nurses offered. It seemed to me that what was most important was what facilities the hospice had for in-patient care if that was needed. The Visiting Nurses had a hospice program but their in-patient care was provided on contract to various hospitals and that didn’t sound good to me so I set them aside. The leading candidate was the Cabrini hospice program at Cabrini Medical Center on East 19th Street. It was one of the oldest programs in the country and had a very good reputation. I set out to make an appointment but there was some confusion about some paperwork that they wanted from Dr. Goldstein so that it took several days before their intake nurse came to see me and Eve. Meanwhile I learned that the Cabrini Medical Center had been closed for about a year but the hospice program had continued. When the nurse came to visit I had a number of questions that she was unable to answer. She said she would find out and call me back; but she never did. I then visited the hospice itself, which appeared to be the only occupied floor of an otherwise unoccupied hospital building. This in itself was somewhat creepy and raised questions in my mind about how good their support might be. I also worried that many hospice staff had left when the hospital closed and that they might be understaffed, making their care questionable. It’s possible that their program was fine, but I didn’t find out. Instead I decided to look into the other leading candidate, which was the Jacob Perlow hospice at Beth Israel Medical Center on 1st Avenue and 16th Street. I visited their hospice unit (on Sunday, April 5, as far as I can recall), which did not have a floor to itself but was closed off from the rest of the hospital. And I made an appointment for their in-take nurse to visit Eve and me. By the time of this visit it was Thursday, April 9. The intake nurse was Philomena Mahon; she was accompanied by Susan Stowens, a hospice social worker who was a Buddhist connected to Shambala and who was connected to Eve through a mutual friend, but I can’t remember who that was. Again, I had a number of questions that they needed to check on and that I wanted answered before I signed Eve up with them. They suggested, however, that I fill out the paperwork and that they then hold it until I gave them the OK. That way another visit wouldn’t be needed.
Because of my hypothesis that Eve’s cognitive condition was linked to hydration, I did what I could, after we returned from the hospital, to encourage her to drink fluids. Eve expressed herself as being willing to do so but somehow she couldn’t take much. Initially her catheter was removed when she left the hospital, but because of the difficulty in helping her transfer from the bed to the portable toilet when she needed to pee, we decided it would be better to have a catheter in place, and at our request the visiting nurse put one in within a few days after Eve came home. Thus I was again able to see her urine in the catheter bag and judge from that how dehydrated she was. When we had our last visit with Dr. Dickler, on March 30, I discussed Eve’s hydration with her and she agreed to prescribe one liter of fluid several times a week (three I think) to be administered at home.
On Tuesday March 31 the necessary equipment was delivered to Eve’s studio and the following day Diana, a nurse from Trinity Home Care came to set things up and to give me detailed training in how to do the hydration for Eve. For this purpose, Eve had to have an IV line. As far as I can remember now, the IV that Eve had at the hospital had been taken out before she left, and the hydration nurse installed a new one, but it’s possible that Eve came home from the hospital with her IV line still in place. In any case, with the IV in place it was a straightforward procedure to access it, do the hydration over the course of an hour or so, and then de-access and flush the IV. So after Diana showed me how to do it, I was able to do it in the future without a problem. After several days it occurred to me, however, that Dickler’s prescription was probably based on the protocol used with ambulatory patients who came to the cancer center to have their hydration rather than having it at home. It differed considerably from the hospital, where 2 liters a day were administered and it was done much more slowly, continuously over the 24 hour period as far as I remember. These thoughts were occasioned in part by failing to see much positive effect from the home hydration. Eve’s aphasia did not improve reliably and her urine still looked too concentrated.
Remarkably, on Wednesday April 8, Dr. Goldstein paid Eve a house call. I hadn’t suggested it, but his office called to ask if he could come by to see Eve. Of course I said yes. I remember that when he came in and started to talk to Eve, she was sitting up in bed and her aphasia was not immediately apparent. He said something like “how are you feeling?” and she responded conventionally with something like “I’m feeling fine, thanks.” It was only when he asked a question that required a less conventional response that Eve’s answer became hesitant and it became apparent that she couldn’t find the words she wanted and so wasn’t able to express herself. Nevertheless, I spoke to him after he was done with his exam and he said that Eve was doing better than he had expected. I asked him if we could try doing 1 liter per day of hydration and doing it more slowly; I explained that I hoped it would help with Eve’s aphasia. Dr. Goldstein said that he doubted if it would help but it wouldn’t hurt to try, so he gave a prescription for this revised dose.
I also remember telling him that I was concerned that I hadn’t been getting Eve out of bed to sit in her wheelchair for several days (I don’t clearly remember why but probably because of the other needs that had to be attended to; also I may have been concerned about her ability to maintain herself in the chair and not slide down in it), and Dr. Goldstein replied that at this time there was no point in bothering Eve with getting her into her wheelchair. My concern about the wheelchair helps me now to remember that at that point, although I accepted that Eve was dying, I did not think of her death as imminent (nor, it seemed, did Dr. Goldstein).
For some time, I don’t remember how long, Eve’s appetite for food had been diminished, as was her appetite for fluids. In the hospital, because the food was unappealing, and because of her other problems there, she didn’t eat much. After we came home, her appetite was very small. It was a challenge to find anything that she cared to eat and even then she didn’t eat much. She was clearly losing weight but because she had a surplus she was not,and did not, become alarmingly thin. At some point, I forget when exactly, I became concerned about all the pills she had to take. For years she had been taking many pills, perhaps fifty or so, each day, which I arranged in daily pill boxes in bins for breakfast, lunch, dinner, and bedtime. She had never had a problem with this, swallowing many pills at a gulp without difficulty. But now it had become a problem. During the last couple of weeks it was increasingly difficult to persuade her to take all her pills. I reduced the number of pills by first cutting out the supplements and then, after consulting with someone (Dr. Goldstein, I think), by opening some pills that were in capsule form and mixing them with applesauce, but this could not be done with the pain pills and besides even the applesauce became increasingly difficult for Eve to eat. I was most concerned about her pain pills and her antidepressant. I consulted by phone with an associate of Dr. Tickoo, the pain specialist, and he ordered a morphine drip to replace the pain pills. This turned out to be relatively straightforward to implement because Eve already had an IV, and Trinity Home Care, the service responsible for Eve’s hydration, could also do the morphine. On Tuesday, April 7, Diana came and set it up. The morphine was administered continuously by a pump, and the amount was controlled and locked by the nurse, so I didn’t need to deal with it. There was a “Y” junction in the IV so that both the morphine and the hydration could be administered through the same IV.
One Sunday after Eve came home from the hospital, I believe it was March 22, Josh Wilner came over for a visit. Eve and I were still thinking ahead, about how we would deal with Eve being in a wheelchair. We were also thinking about Eve’s position at CUNY and whether she would be able to keep teaching. We discussed all this with Josh and he very generously proposed that he and Eve plan to teach a seminar together in fall of 2009. I forget now what the topic was, but it made good sense as something they could do together. The idea was that if all went well they would team-teach the seminar, as they did with the ZICS (zero, infinity, chaos, sublimity) seminar a few years before. And if Eve because of her health was occasionally not able to make it to seminar, then Josh would teach it by himself. This flexible arrangement made it possible for Eve in good conscience to plan to continue with her CUNY position rather than moving toward a disability retirement.
On Tuesday March 24 Eve held her office hours at her studio in the evening. At least a couple of people came. I opened the door when someone came, then withdrew into the other room. I really don’t remember this well but I think there was a brief visit or two and the last visitor was her student Zach. Some time past and I looked into the room to find Eve asleep in her wheelchair and Zach gone. I’ve never asked him about what his visit, but this reminds me that already I was concerned about Eve’s cognitive condition – I probably had been, off and on, ever since the stay in the hospital. It’s very difficult for me to remember in any detail and describe now, but I think I wasn’t confident of Eve’s always being able to stay focused on the conversation, to follow it fully, to be sharp in her contribution to it. I had something of the same concern during her seminar the following evening. Eve didn’t say much, and I wasn’t sure how closely she was following. The two student facilitators carried the seminar.
Then on Saturday March 28, Eve developed the aphasia I’ve already described. I was hoping over the weekend that it would lift. That the hydration would help. But it didn’t seem to. It was a characteristic of Eve’s condition that although sometimes she struggled to find words, sometimes her speech was fluent but the words were not recognizable. It was as though she knew what the words were and they were clear to her but were garbled in the production. And she seemed not to realize it until she saw that she wasn’t understood. So I don’t think she initially understood the extent of the problem.
On Monday morning, March 30, before the appointment with Dr. Dickler, perhaps during one of the intervals when Eve’s aphasia was less, I said to Eve that I didn’t think she was up to having her office hour on Tuesday. It was clear to me that Eve was hurt by my saying this. This was very painful to me but I didn’t want to expose her or the students to what I was afraid would be the very awkward and embarrassing situation of Eve’s aphasia. What was so very painful to me was the sense that I had from Eve that this was something that she did not agree with, that I was imposing it on her, that I was not on her side. She said, rather coldly as I remember, “If you think so.” Certainly this was one of the most difficult moments of her illness for me, but it seemed inescapable and so I do not regret what I did. I wrote and sent the email under Eve’s name. I left the question of the Wednesday seminar open, but then on Tuesday evening I wrote, again under her name, to say that Eve was not well enough to attend the seminar and that it should meet at the Graduate Center.
Looking at Eve’s email for the month of March gives an idea of the progression of her condition. She sent a number of emails between March 17th and March 23rd and so was clearly sitting in her wheelchair at her computer and attending to her correspondence. As late as Monday, March 23rd she was making promises of work she would do over the next few months. Then there is a short email to the Proust seminar, written early on the afternoon of Wednesday, March 25th, saying that the seminar would meet that evening at her studio, but I think that I wrote that email. The few emails sent under Eve’s name in the following days were all written by me, but with Eve’s concurrence. So it seems that Monday March 23rd may have been the last day that she sat at her computer. If so, I’m sure that at that time we didn’t know that it would be the last.
To look ahead, concerning Eve’s seminar, the next two weeks were spring break at the Graduate Center, so Eve’s Proust seminar was not scheduled on the first two Wednesdays of April. The following Wednesday, April 22, after Eve’s death was known to the graduate students, Josh very kindly took over the seminar for its final four meetings, ending May 13. So, due to Josh’s unstinting helpfulness and Eve’s forethought in creating several years earlier her method of having graduate student facilitators, the Proust seminar carried through, uninterrupted, to its conclusion.
While Eve was in the MSK hospital, we talked about how to let her friends know what was going on without having to write to or call each of them individually. We started to make a list of close friends, with the idea of making a mailing list that email bulletins could be sent to about Eve’s condition. After Eve got out of the hospital, David came to stay with us and help out for several days, as I have mentioned. One of the very helpful things that he did was to take that list of names and, with Eve’s help, expand it and find email addresses for it. Then he and Eve together composed an email about her condition and sent it to the list (perplexingly, I can’t find that email in either Eve’s or my gmail). After David went home, Claudia took over the mailing list and the role of communicating with Eve’s friends. This was an immense help to me because I was very much occupied, and considerably stressed, by the dual responsibilities of managing Eve’s care and keeping up with my teaching and other responsibilities at my college. Claudia came to function as a kind of gatekeeper, deflecting well-wishing friends by letting them know that neither Eve nor I was able to be very communicative. (For almost a year after Eve died, Claudia continued in this very helpful function for me.)
Many people sent cards and little gifts, which I have still have not found myself able to respond to as I would wish. And some people, especially from out of town, came to see Eve. Here is a no-doubt partial list, from my calendar: Adam Frank, as I’ve already mentioned, came for several days at the end of March; Eve’s nephew Adam and his wife Betsy accompanied her mother Rita up from Bethesda on the bus, visited with us in the afternoon and evening of April 4th, and then returned to the Bethesda the following day; Rita stayed with her sister Elaine, coming in from Queens several times to see Eve, and not going home until after she died; Eve’s student and friend Greg came to see her on April 5th; her friend and teacher Neil came on the afternoon of April 7th; Josh came at noon on April 8th. Mike and Jon came to NYC for several days, arriving at Eve’s studio late in the morning on April 10th; they arrived just as Eve, after an unexpected downturn in her condition, was about to be taken to the Beth Israel hospice.
Wednesday, April 8, I gave Eve the usual hydration that she had been receiving. Then on Thursday, with the new prescription from Dr. Goldstein, I started her on the daily hydration: the same 1 liter amount but delivered much more slowly. I don’t remember much about that Thursday. My calendar shows that Rita and Elaine came to visit again in the afternoon. It was Passover, so I had no classes to teach and was with Eve. This was also the day on which I had the visit from the Beth Israel hospice. As far as I remember Eve slept most of the day but was awake for some of it.
Sometime Thursday night, possibly toward morning as far as I remember, I became aware that Eve’s breathing had changed. It sounded as though there was liquid in her throat or windpipe and as though she might be in danger of not getting enough air. The sound was very disturbing to me. This condition persisted into the morning. Now, after having put off signing Eve up for the hospice on Thursday because of questions I wanted answered, I began to wish she were already in the hospice program so that she could have access to their in-patient care at Beth Israel. This was Good Friday, with the Easter weekend approaching, and I worried that it might be Monday before she could be enrolled. Mid-morning the visiting nurse came and examined Eve. She confirmed my belief that Eve should be receiving in-patient care. I called Susan Stowens, told her about Eve’s changed condition, and said that I urgently wanted to complete her enrollment immediately so that she could be admitted to the hospice in-patient unit. Susan then called Philomena, the nurse who had visited with her, and who was at home because it was Good Friday, and also called Donna Pierre Pierre, one of the hospice administrators; among the three of them they very kindly did was what needed to get Eve enrolled. I wanted Eve to go to the hospice immediately, so that she could get help with her breathing, but now it appeared that there were no vacant beds. Then somehow they managed to make a bed available, and an ambulance was sent to take Eve there. It was about 1 pm on Friday, April 10. Eve had not woken up that day, nor did she wake up again.
It had been a difficult morning. In addition to my anxiety about getting Eve enrolled in and admitted to the hospice, there was a phone message (I don’t remember why the phone wasn’t answered) from her close friend Cynthia Chase, who sounded distraught, saying that she had decided that she had to see Eve and so was taking the bus from Ithaca and would stay with their friend Andy. I called Andy to tell him what was happening and ask him if he would please intercept Cynthia or get a message to her because there would be no one at Eve’s studio when she arrived. (Andy said he would do this but somehow he failed to connect; I’m not sure what happened, but Cynthia apparently never got the message, and went back to Ithaca.)
At about noon, just as I was arranging for Eve to go to the hospice, Mike and Jon, who had come from Atlanta to see Eve, arrived. Eve’s condition, which they had no reason to have expected, was of course very upsetting to them. They left about the time that the ambulance crew arrived.
I had made another appointment for that afternoon. Susan Stowens had given me a few names of private-hire home health aides, and I had called one the day before and made an appointment for her to visit us and talk about caring for Eve. Now I had to call and leave her a message saying that Eve was going to the hospice and we wouldn’t be needing her help.
The two ambulance people arrived at the studio and bundled Eve onto a stretcher. As we were coming out of the elevator we met the home health aide who had been caring for Eve, rather ineffectually, arriving for her afternoon shift. I told her too that we wouldn’t be needing her help anymore.
The ambulance ride was disturbing. One of the attendants was an officious women who seemed hostile to the whole concept of the hospice, where she knew we were going, and determined to administer every test and procedure possible in the 5 minutes it took to drive to 1st Avenue and 16th Street. I finally told her to stop, which she reluctantly did, but she still caused me a fearful moment when we arrived at the hospice and the nurse there looked at all the apparatus that Eve had been hooked up to and said that if Eve needed all that monitoring she would have to be in the emergency room (which I desperately wanted to avoid). I protested that it was all the work of the ambulance crew; then a doctor arrived and took in the situation. She told the crew to unhook Eve, transfer her to the hospice bed and leave.
It took a while, maybe a few hours, for Eve to be taken care of, but she was unhooked from her portable morphine pump and connected to the hospice one, and she was washed and tended to and put into one of their gowns. A suction tube was used to vacuum some of the fluid from her windpipe and she was given medicine (by means of a patch on her arm, if I remember correctly) to help dry out the excess fluid in her body. She was running a low fever, possibly from an infection, and was given something like aspirin for that. (In keeping with the hospice philosophy, all of the treatment was directed towards alleviating the symptoms, not toward ‘curing’ the underlying problem, so she was not given antibiotics.) By the evening the gargling drowning sound in her breathing was gone and she appeared to be sleeping comfortably. As I’ve said, she was asleep, or unconscious, through all of this.
It seems probable to me now that the hydration had contributed to the fluid buildup that so disturbed Eve’s breathing. I mentioned the hydration to the hospice nurse that first afternoon (perhaps I was asking if they were going to give her hydration) and she showed me that Eve’s legs were swollen by fluid that was accumulating there. She explained to me that Eve’s body was no longer able to process the fluid that she was given. Eve received neither food nor fluids (as far as I recall) for the two days she was in the hospice.
The hospice had some private rooms and some two-person rooms. Initially Eve was in a two-person room but the other bed was empty. The next day, I think, a private room became available and, with my encouragement, Eve was moved there. In both rooms there was a reclining chair for me to sleep in, so I was able to spend the nights with Eve.
The hospice was a good, supportive place, with little of the bustle and intrusiveness usually associated with being in the hospital. All of the staff seemed to be doing their best to be kind and helpful. It was a comfort to me to have Eve there and to be relieved of the responsibility of deciding what was best for her care. After the anxieties of Friday, Saturday seemed calm. Because it was the weekend, the regular hospice doctors were not there. The hospice space was shared by another clinic — a pain clinic I think — and one of their doctors came around to look at Eve and adjust her morphine. One of the nurses explained to me that on Monday they would do an assessment of Eve’s condition and make a plan for her, either to keep her in the hospice or to send her home once her condition was stabilized (the emphasis in hospice programs is generally on home care, with in-patient care only when needed). It seemed to me unlikely that Eve would be sent home.
Friday evening, when Eve appeared to be resting comfortably, we received an unexpected visit from Susan Stowens, who stayed and talked with me for some time. I don’t remember our conversation, except that I talked with her about funeral arrangements, told her that Eve wished to be cremated, and that, although we would have a memorial service sometime in the future, I didn’t plan for any ceremony right after Eve’s death (I was guided in this by how Eve’s family had handled her father’s death six months before). She gave me a list of funeral and cremation services that she recommended, and took the time to discuss each of them with me. The top of the list was a basically one-person service provided by Paul Giffone. Susan said that she had had one problem with him (he had been unresponsive in some way, as far as I remember) but that otherwise he was very good.
Sometime over the weekend, I also received a visit in Eve’s room from the hospice chaplain. He may have been Catholic, I don’t remember for sure but think that he was addressed as ‘Father.’ He seemed to be a kind, open person. I told him that Eve was Buddhist and declined his offer of spiritual support, but I did ask him a practical question that had been on my mind. Perhaps prompted by having seen ‘Jules and Jim’ some fifty years before and having been deeply impressed by the closing scene in which Jules, alone, attends the cremation of Jim and Catherine, I had been thinking about attending Eve’s cremation, but I’d been unable to learn anything about doing so. I asked the chaplain if he knew anything about it, and he said he did not but that he could ask a Japanese colleague, Issan, who was a Buddhist chaplain. He used his cell phone to call Issan, explained my question to him, and then let him talk to me directly. Issan told me that he had arranged for such a viewing once but that both he and the family for whom he had arranged it had found it deeply disturbing, so he did not recommend it. He said that they had found both the crematorium itself and the proceedings to be plainly functional and not at all spiritually satisfying. I thanked him for his help but did not mention to him that what he described was just what I was hoping for: something plain, direct, and unadorned.
For some time, after Eve had given up her quest for a Buddhist guru, T had been Eve’s informal spiritual advisor. Eve saw T, I think, as having a deep knowledge and feeling for Tibetan Buddhism, but not being at all doctrinaire about it. When Eve was first reading about Tibetan Buddhism, and was still expecting to die very soon, she requested that a Buddhist monk be present to read the Tibetan Book of the Dead to her in the days after she died. But in the following years, Eve gave up the search for a formal personal teacher and became more comfortable with her own eclectic, non-doctrinaire approach to Buddhism. She also lost interest in finding a Buddhist community (sangha) to belong to. So there was no community on which to draw when she died. While she was in the hospice, I started looking again at the Tibetan Book of the Dead and found what seemed to me a great deal of negativity — a dwelling on the scariness of the after-death situation — that I was not sure if Eve would have sympathy for or would still want read to her. So I asked T about whether such reading was necessary. T, as I remember, said no, that her guru did not require it and that she did not know of its often being done. She did say that there was a text called the Sukavati that, in her experience, was often read after death, and she kindly found a copy of it for me. The other text that I have most relied on is the Heart Sutra. It was a key Buddhist text for Eve. She wrote about it, both in prose and in her poetry, and had attended a teaching of several days by HH the Dalai Lama that focused on the concept of emptiness and included a group recitation of the Heart Sutra. Thus these two texts were the ones that I used in my private observances when Eve was cremated and when I scattered her ashes.
Mike and Jon came to visit Eve in the late morning on Saturday and sat with her for a while. Then, overlapping with them, Rita and Elaine came in from Queens for a visit. Later in the afternoon Eve’s friends Mary Campbell and Mandy arrived. They stayed a long time, well into the evening, and I took the opportunity to walk home and do some chores (and also, as far as I remember, to send some emails). In the evening I made some phone calls to schedule visits for the next day because a number of people wanted to see Eve and I didn’t want them to arrive all at once.
Sometime overnight on Saturday, Eve’s condition changed again. Her pattern of breathing changed. I’m not sure I remember accurately now, but it seemed less relaxed, maybe with a sharper intake; and Eve’s eyes seemed to be not quite closed all the way.
In the morning was a stream of visitors, all dear friends, all kindly arriving when I had suggested. Andy and Meredith came. Then Josh and Marsha. Then Joe and Mark. I mentioned Eve’s changed condition to Josh and he said that he had seen a similar condition in his father for the day or two before his death. Later on Sunday morning the weekend doctor came by on his rounds. I told him what Josh had said and asked if he agreed. He said yes. This was deeply upsetting, but I’m grateful to Josh and the doctor for telling me because it helped prepare me for what was to come.
In the evening Mandy returned. Again I took the opportunity to go home for a little while, perhaps to send some emails. Mandy said she would call me if there was any change in Eve’s condition. Mandy was catching the late bus back to Washington DC and I wanted to return before she left. As I was returning I tried to call my sister Edith to tell her what was happening but the connection was bad so we agreed to talk the following day. As far as I recall, I returned to the hospice about 9:30pm and Mandy left about 10pm.
The night nurse was Delia. It occurred to me to walk down the hall to her station and ask her, with difficulty, whether, if Eve died during the night, I could have some time to sit with her. She was very sympathetic and agreed, I think, to about 2 hours.
At about 10:30pm Delia came in to check on Eve and to adjust her medications. Eve’s breathing seemed labored. Delia spoke to Eve, telling her that I was there, and that it was OK for her to go now. That she could let go if she wanted and that it would be OK.
What Delia did was very helpful to me. I think she somehow gave me the idea that I could talk to Eve (I can’t remember now if I was talking to Eve before – I think I must have been – but not so openly and freely). After Delia left, I sat by Eve’s bed, holding her hand and talking to her. I was saying much the same things over and over. I told her how good she was, how much good she had done for so many people, that everything would be OK, that she could go whenever she wanted, and over and over how much I loved her and how wonderful she had been to me. What a sweet Panda! What a lovely little Panda! After a while Eve’s breathing slowed and the time between breaths increased. She would draw in a breath and then some time would pass before another. She drew in a breath and more time passed. She didn’t breath again. After some moments I realized that she was dead. A little while later I looked at my watch. It was 11:25pm on Sunday, April 12.
I sat with Eve, talking to her, holding her hand. Around midnight an attendant came in and saw that Eve was dead. Delia came too. Then they went away to find a physician to make the official pronouncement of Eve’s death. Maybe half an hour later they came back with a physician and asked me to step outside for a while. They cleaned and arranged Eve’s body, taking out the IV and putting on a fresh gown, and the physician filled out the necessary forms. Thus Eve’s official time of death is early in the morning on Monday, April 13. After they were done I came back in and sat with Eve again. I called Elaine (waking her up of course) with the news of Eve’s death. I also called and left a detailed message for Paul Giffone, whose cremation service had been recommended to me by Susan Stowens. Around 2:00am I gathered up my things, said goodbye to Eve, and left.
Later on Monday morning, I received a call from a woman at the eye bank to ask for the donation of Eve’s corneas. I was reluctant myself, but I had no doubt what Eve would have wanted, so I said yes.
Around noon, Rita came to Eve’s studio. We had lunch and talked a while. Then we took a taxi to the Vamoose bus stop near Penn Station, and I helped her onto the bus. She returned to Bethesda, where a friend met her at the bus stop and took her home.
Paul Giffone also came over on Monday and we discussed the plans for Eve’s cremation. I asked him about attending (‘witnessing’) and he said that was permitted for a small additional fee. I told him that I would like to do so.
On Wednesday April 15th I rented a car and drove to the Liberty Grove Crematorium in New Jersey. It was a simple place, rather industrial in character, but very tidy and clean. After a while Paul Giffone arrived (with a station wagon I think) with Eve’s body in a plain cardboard coffin which he unloaded with the help of the man at the crematorium. Together they placed the coffin on a kind of gurney. At my request they opened the coffin so that I could see Eve one last time. I had brought a Tibetan necklace of colorful felt beads that I had bought for Eve at the Rubin Museum’s holiday craft fair the previous December and that Eve was happy with. I placed the necklace inside the coffin, resting on Eve’s chest. Then they closed the coffin, wheeled the gurney up to the door of the furnace, and moved the coffin onto a kind of conveyor belt which carried it into the depths of the furnace. They closed the door of the furnace and went into the adjacent office leaving me alone, as I had asked. I don’t remember how long I was there – maybe an hour or so. I read aloud the text of the Sukavati, which T had given me. Then I recited the mantra of the Heart Sutra many times. At some point in my recital I had a distinct feeling, with no real sensory component, of a kind of expansion emanating from the furnace into the room and beyond. It seemed to me as though something was being released from Eve’s body, which was no longer there, and expanding into space. It felt to me like an expanding bubble that would just keep on expanding and expanding. It wasn’t an experience I had anticipated or would attempt to explain but the feeling of liberation was real.
After a while the two men came back into the room and told me it was time for me to leave. They didn’t explain but I knew that it was time for them to remove Eve’s ashes from the furnace and to grind down any remaining large fragments of bone. The grinder was visible on the side of the room. I went outside. There was a small old Jewish cemetery there and I wandered around in it for half an hour or so taking some photos. Then, as I had been instructed, I went back to the door of the crematorium and was given a box containing Eve’s ashes and the certificate of her cremation.
I drove back to Manhattan by way of Staten Island, stopping there at the Jacques Marchais museum of Tibetan art, a place that Eve and I had often talked of visiting someday. I toured the house and sat for a while in the garden, and then I drove home. I put the box with Eve’s ashes on the table next to my reading chair, making a sort of shrine to which I added some photos and from time to time other things such as flowers or incense.
Forty-nine days following April 13, T, Claudia, and Claudia’s friend John Sell, who is, like T, a Tibetan Buddhist, came over to my studio. John conducted the forty-nine day ceremony and we all recited the words with him. At the end we put a small photo of Eve on a chopstick, like a little sail on a mast, and burned it, symbolizing, I suppose, her release from physical existence.
Late in the evening before the ceremony, close to the time that was actually forty-nine days after Eve’s death, I had another experience, difficult to explain, but important to me. Perhaps I can write about it someday, but I expect to remember it.
I kept Eve’s ashes by my side for over sixteen months. On Sunday, August 22, 2010, I flew to San Francisco with her ashes and drove to a cottage I had rented in Bolinas. On Tuesday, I drove to Sausalito, where I had engaged a boat (the ‘Blue Runner’) that offers the service of scattering ashes (as well as tours and sports fishing). The captain took the boat out under the Golden Gate Bridge to a quiet place along the northern shore of the Golden Gate. The deck hand told me it was time, whenever I was ready, and retired to the cabin. I first threw into the ocean a few fragrant yellow flowers from a large bush outside my cottage in Bolinas. Then I scattered Eve’s ashes. The boat was continuing to move slowly west, and the breeze carried the ashes out. As I slowly poured them out of the plastic bag, the breeze carried them in the air making a delicate grayish white plume a dozen or so feet long. I read aloud the Heart Sutra and recited its mantra many times. The boat circled slowed around and I told the deck hand that I was done. We returned to Sausalito.
On the drive back from Sausalito, I stopped at Muir Woods. It was a special place for Eve and me. I had taken her there in June of 1968 when she had come to visit me at my home in Berkeley before the Telluride Convention at Deep Springs. I walked among the redwoods, and many tourists, for a couple of hours. Then I drove on to Bolinas.
It was our 41st wedding anniversary — August 24, 2010.