People look at me. As I walk along the waterfront on this Greek island, among the café-terraces thronged with lightly clad vacationers, I think: they still look at me. "Still," because a
few months ago, I've turned fifty. Men's stray glances come my way, and the curt, critical glares
of women. Even children sometimes take a second look. I have a large, rather soft face which
gets noticed from afar. I am now three years older than my mother ever was. I have aged meeting
those idle stares. I have come here for twenty years. My husband and I have a house by the sea.
Yet when confronting the curiosity of the waterfront tourists, the thought unfailingly
comes to my mind that it may be drawn by something they may not even be aware of, but which
may subliminally alarm and distract them - the absolute, scandalous flatness of my chest. For four
years now, I have lived without my breasts. We had a Belgian sculptor at dinner once, and one of
his daughters, who was nine, asked: "Papa - the lady, is she a woman or a jeune fille?" I don't
bother much hiding the absence of my breasts any more. Last summer, I have started wearing a
black, skin-tight lycra top and children's tee-shirts, which may be overdoing it.
I have had a bilateral mastectomy, not because I had breast cancer, but because I was determined to do whatever was in my power, if anything, not to become another victim of the illness that had caused the death of my mother. It was a crude and drastic step. The basic assumption being that you cannot get cancer in an organ that you don't have. At the time that I was considering having the operation done, the medical community did not generally agree that this logic was soundly grounded. Although privately, many doctors and breast surgeons had never doubted that preventive mastectomy must reduce the risk of breast cancer in women who submit to it, and a small number of specialists were ready to recommend and take on such an intervention, the official line was one of strong resistance. To remove the breasts of healthy women when everything was being done to preserve the breasts of women affected with breast cancer seemed contradictory, and to some extend absurd. It also threatened to be very costly to health insurance companies should a great number of women at high risk chose to have the operation. And it seemed too simplistic a solution: no mastectomy could remove the totality of the breast tissue and, especially if you were genetically predisposed to breast cancer, it was assumed that it would occur sooner or later in the tissue that remained.
On January 14th, 1999 this belief has been laid to rest definitely by a study published in The New England Journal of Medicine. It was conducted on 639 women with a family history of breast cancer who had undergone bilateral preventive mastectomy over a period of thirty-three years (1960-1993) at the Mayo Clinic in Rochester, Minnesota. It showed that in women with a high risk of breast cancer on the basis of family history, prophylactic mastectomy reduced the incidence of breast cancer by at least ninety percent. It also drastically reduced - by up to 94 % - the rate of death from breast cancer.
September, 1994. Sitting on our terrace, above the sparkling afternoon sea, I am reading The International Herald Tribune. As always, the issue is a few days old. We get the newspapers when we happen to drive into town to do shopping, no more than once or twice a week. I might easily never have read this issue, but, no doubt, the information would have caught up with me in the States, where we were due back two weeks later. The article, a plain, framed Associated Press dispatch on the Trib's "Science and Health" page, dated September 15, is titled:
BREAST CANCER GENE FOUND
Three teams of U.S. researchers had won the race to isolate the gene, BRCA1, that causes the inherited form of breast cancer. Some researchers believed that a test to identify the carriers of this gene could be developed within two years. Women with the defective gene had about a 60 percent chance of developing breast cancer before age 50 and an 85 percent chance by age 65. The test would enable women who carry BRCA1 to make the difficult decision of having a mastectomy to forestall the disease.
There was, for me, one jolting piece of information in this article: namely the first mention that had ever come my way of the existence of an eighty-five percent statistical chance, for some individuals, of getting breast cancer. And this chance was genetically inherited, and therefore concerned me. I had often heard of, before then, and I believed in, the already alarming twenty-five percent chance for women like me who had breast cancer cases in their maternal family. Even one of the best and most comprehensive books on breast health then on the market stated, in its 1990 edition, on the subject of hereditary risks: 'Remember, nobody's risk (of breast cancer) can be higher than 27%.' The chances I had thought until now to be mine, around twenty-five percent at most, might find themselves suddenly multiplied by a factor of more than three, pending administration of a test that would not be available for two years! My still low-grade fear of the disease blossomed to full size in that very minute! Especially considering that these distressing news came accompanied by another revelation, that of a fairly clear schedule for the cancer to appear: a 60 percent chance by the age of fifty, and by the age of sixty-five, practically everybody who was going to have this genetically inherited cancer would have it.
My mother's breast cancer had declared itself when she was forty-two. One of her maternal aunts had died of breast cancer at forty-eight, another of her maternal aunts had died of breast cancer at sixty-one. Her third maternal aunt had died of ovarian cancer in her mid-sixties. A first cousin of my mother's on the maternal side, Mariki - a daughter of her maternal uncle - had been diagnosed with breast cancer in her mid-forties and was still alive. A few months earlier, on Easter 1994, my husband and I had visited my uncle in France and heard disturbing news: another, younger first cousin of my mother, Suzanne, the sister of Mariki, had recently died of breast cancer "at fifty-one, or so." There were now five cases of breast cancer on my mother's side of the family, including her own, four of which having brought death. Four of the five had appeared before the age of fifty and all had appeared before sixty. Two of the breast cancer deaths had occurred before the age of fifty. The possibility of a genetic link between all these cases of breast- as well as ovarian cancer was ominous. I, myself, at that point, was less than five years from turning fifty. Breast cancer tumors, I knew, often started developing several years before they could actually be detected.
There was also, in that International Herald Tribune article, mention of another jarring suggestion : "... having a mastectomy to forestall the disease..." Can the chance reading of one newspaper-article strike one so forcefully and wrench one's life into a completely new direction? When this article happens to be the spark that lights the fuse for an explosive system all set to be ready to go off, yes! This system had been laid down progressively in my psyche ever since, not quite aged seventeen, my mother had revealed her breast cancer diagnosis to me. I was not aware myself, then, in September 1994, of how ready I was to explode into fear and action. The news of the death of my mother's young cousin, a women whom I barely knew, had registered in me more powerfully than I thought. And there had been an event even more jolting in our own close family, eight months before, that had affected us deeply: my sister-in-law, who had herself lost a sister and a maternal aunt to breast cancer, was found to have a metastacized malignancy in her breast...
I have always jumped rather boldly at considering new possibilities: so that I am quite sure that, within minutes of reading this article, my mind was pretty much made up as to the logical course of action to take: to try to undergo this test, if possible by joining a trial run, as soon as we returned to the United States. If the test were positive, I would consider having a mastectomy, hoping that it would still be a preventive one. An eighty-six percent chance of going through what I had seen my mother go through I was not willing to take, be it at the cost of my breasts. But what if the test were still years off? I could wait two years, wishing for the best, and have my breasts regularly checked, then have the test, if it was forthcoming. By then, I would be almost forty-eight. I wished that I had been a few years younger rather than standing, in terms of time, on the edge of a cliff.
But then, belonging as I did to the avant-garde of the generation of the baby-boomers, I had often found myself being among the first for one thing, and among the last for another, and I could as well consider myself fortunate that the discovery had been made in time to eventually, who knows? save my life.
That my life might be in need of saving was not the least shocking intimation that I got from this article. I was feeling splendid and had unashamedly reveled in my good health for years. Later that afternoon, I walked down to the little cove below our house where I usually go to swim naked, and palpated my breasts and myself all over while in the water, and got the sensation of every cell in my body protesting of its good health and contentedness. In the silence and the clear water, my body felt very much alive, seemed to be intent on lasting for a long time and quite divorced from the anxieties of my mind. I was in better physical shape than I had been when I first met my husband, seventeen years earlier, and my breasts, truly late bloomers, were more attractive than ever before, round and high. There was, from all signs, "nothing wrong." But, if I needed to take a preemptive strike, it was essential that there shouldn't be...
Back in Princeton, I consulted with Dr. Z., a breast specialist. After two consultations and a mammogram, separated by waiting periods of several weeks, he refused to undertake the operation. Dr. Z. dismissed explicitly the information about my great-aunts and second cousins, saying that they had no bearing at all on my chances of getting breast cancer. Besides my mother, the only relatives whose breast cancer he would have considered relevant would have been sisters of mine, or maternal aunts. But then, I had neither. Certainly, the fact that no sisters had been born to my mother or to me did not lessen my statistical chances of having inherited the gene that killed my mother. Moreover, Dr. Z. assured me, if my mother had breast cancer, chances that I would get it myself were only twenty five per cent - which was in blatant contradiction with the recent findings about genetic breast-cancer. That meant, he announced jauntily, that I had a seventy five per cent chance of never getting breast cancer. With odds like that, he added, I could go to Atlantic City and clean up on the gambling casinos. "Of course," he said, "I will not guarantee that you will not get cancer, but if you do, we will help you." Close surveillance, yearly mammograms, these measures he deemed in my case sufficient. Furthermore, he said, he had an excellent practice, he made a very good living at what he did, he did not need the money! "I'm not saying that you can't find someone else who will do it for you!"
That Dr. Z. made an excellent living, which he deserves and for which he can only be congratulated, would have seemed at first glance irrelevant to my case, but was probably the most telling element in his reply: things were going well for him and he was not ready to undertake a controversial surgical operation that might bring him a law suit should I decide later on that it had not been needed, or should there be complications, or should I be, or go, nuts. In other words, he did not want to take on risks, and preferred to leave me with my own instead... By telling me that breast specialists could be found who would undertake the intervention, he had fulfilled his duty towards me.
I take objection only to his comparison with Atlantic City: in Atlantic City, if I lose, I lose only money. And I can win only money. We are comparing games where the stakes are not the same. I am playing for decades of life - one, two, three, maybe four decades of life... I reread studies on hereditary illnesses and became convinced that Dr. Z. was dead wrong to dismiss my family history as he had done. He was merely taking a fifty-fifty gamble that I had not inherited my mother's predisposition. A no loss gamble so far as he was concerned.
I found myself now with a new, unexpected anxiety: that of finding no one willing to undertake this unusual operation with which my own mind, oscillating as it did between confidence and determination, and agonizing doubt, was obsessively preoccupied. It occurred to me that this was rather odd, as I could easily, and at any time, have found someone willing to perform serious surgery on any part of my face or body, provided that the purpose was deemed to be merely cosmetic. I could ask for surgical removal of large amounts of fat from my body, which is as much my own tissue as is my breast tissue. I had full freedom to risk my health in having someone expand the volume of my breasts, despite sensational warnings in the media about the hazards of leaking silicone breast implants, but I did not have the same freedom to maim my body, through an act of my own will, in exchange for the greater benefit of a lengthened life, increased peace of mind, hopefully extended social usefulness, and reduced pain and social burden.
Meanwhile, I was going through a winter of inner turmoil, during which I was forced to consider, and suspect, my own motives. And, even, my own sanity. I had, of course, discussed my quandary at length with my husband, who had finally, and carefully, asserted that, were he knowingly burdened with similar statistical chances of harm to health and life and happiness, and given the opportunity to immensely reduce them through surgery which would not impair any vital function, he would not hesitate to have the surgery. Yet, neither of us could ascertain that, in my concrete case at least, such simply convincing reasoning might not be in itself a trick of well-disguised nuttiness. There was one serious and troubling hint that this could have been the case: it is known in psychology, and my husband had warned me about the fact long ago, that women tend to go through critical periods of depression when they reach the age at which their mothers died, the more so if they had experienced this death in a way that had been particularly traumatic. Now, I was forty-six, and my mother had died at forty-seven. The timing of my exacerbated concerns with breast cancer looked disturbingly like a confirmation of this phenomenon. By chance, the discovery of the breast cancer gene had come along at that same time. Could it be that, at any other time in my life, I would have granted it only passing, if serious attention, and considered that the regular, yearly mammograms, which Dr.Z. recommended, were the best thing for me to rely on?
Now, on the other hand, was not precisely the approach of the age of death of my mother of significance when one considered that we were concerned with my inheriting a genetic condition that was liable to lead to a similar issue? Moreover, I was not even sure that I was going through a depression... That I would lie awake in bed for hours, and let my mind roll through the darkest corridors of the soul, explore the most hidden diverticulae of fear and madness, unwinding endlessly the anguishes and hopes of Being, agonizing over my decision was, given the nature of the decision, normal and in the order of things.
Every night, before moving into my nightshirt, I would contemplate myself in the bed-room mirror, asking myself if I actually understood what I was projecting to do to myself, and whether, once it had been done, I would be able to live with the results of this, my own, decision? I could not get myself to think of reconstruction then, as the very thought of my breasts being replaceable seemed to me offensive, treasonable, nearly sacrilegious (for they had become, this was the heart of the matter, to me fearsome, that is, sacred objects) and at any rate, it looked to me at the time like a crude and unsatisfactory proposition... The fact was that, in matters of preventive mastectomy, there existed nothing for me to hold on to, there were no models, no examples, no books to read, there was no experience of others that I could draw on, I was swimming in the darkest waters... I did not even know whether, solely for contemplating this new, rare and little tried solution, I was being cowardly or gutsy...
The Princeton surgeon had sent me on my way in less than ten minutes when I consulted him about preventive surgery. Dr Irene Wapnir, the breast surgeon at the Robert Wood Johnson Hospital in New Brunswick had a discussion with me lasting well over one hour, even before examining me. She had never done a fully preventive mastectomy, meaning, in the absence even of pre-cancer, and for reasons of family risk alone. She was puzzled, interested, challenged, somewhat fascinated, serious and grave during the whole interview, and cautious as well. Dr Wapnir expressed some doubt of the knowledge I could have of my family's health history: there was no way I could bring direct proof of anything, except, maybe, in the latest case, of the recent death of my mother's first cousin, Suzanne, and probably in the case of her sister. The other deaths went back from twenty-five years, in the case of my mother, to over fifty, in the case of the first of her aunts. There was nothing but family tradition and hearsay, mostly coming from my mother, that told me about those illnesses and deaths. There were no medical records available. There was certainly no doubt about the illness of my mother, but what records would have been available after a quarter century? I described to Dr. Wapnir in detail the case history of my mother, who had let no aspect of her illness remain hidden from me. I was somewhat worried that the wealth of particulars might make Dr. Wapnir think, if she was in a suspicious mood, that I might have appropriated, knowingly or not, from my readings... But my narration turned out to be convincing in the end, for she seemed to recognize the scenario and give it faith.
The family history, if taken at face value, was impressive, she said. She confirmed my fifty per cent chance of having inherited my mother's susceptibility and, given my age, I was, according to her, approaching the end of a statistical window: I had fared well until now, and this could mean that I had not inherited the genetic condition. It was a tempting thought. It could also mean that I had been lucky up to now, and/or that a more cautious diet and life-style had paid off in a delay in the onset of the illness.
She cautioned me against exaggerated expectations: preventive mastectomy had been practiced so little that there was almost no reliable data available on its efficacy. Most of such interventions had been done in a spirit more akin to plastic surgery, keeping the nipple and a considerable amount of tissue. Anecdotal evidence exists of cancer having developed after this type of intervention. Clean and total mastectomies having traditionally been practiced only in the case of an already present cancer or pre-cancer, their data could not apply to operations on presumably healthy breasts. Matters being at this stage, she was able to tell me that, with a simple, bilateral mastectomy not excising any of the lymph nodes, and considering that some breast tissue would always remain attached to the chest wall or the under-layer of the skin, and that the chances of a cancerous modification of these tissues were as high as those of any other breast tissue that had been removed, a small risk remained, which she cautiously evaluated at between one and ten per cent. This was, of course, a tremendous improvement in the case of an original risk of eighty-six percent.
When she palpated me minutes later, she discovered a small lump, in the upper outer quarter of the right breast, towards the underarm, which Dr. Z. had not noticed, or which had not been there two months earlier. Probably a lipoma, she said. Yet, for a fraction of a second, there had been a sharp, disturbing expression in her eyes. "I do not think that there is anything wrong," she said as she sat down. "But if you have cancer, then we are in a completely different ball-game!" I wish I could have seen my face. She asked me to go right away to have a mammogram taken, with a spot compression of this particular area. She announced that she was willing to do the operation, either in one month or so, or maybe in fall, when I came back from Europe. She seemed to favor fall, "to let me have my breasts another summer!" but to me, a summer of swimming in the Aegean seemed to be the perfect place to become accustomed to a drastically redesigned body. She thought that, in view of my family history, our health insurance, might well pay for the operation. She made her promise of operation conditional upon a psychiatric evaluation.
I could have, if I wanted, immediate reconstruction, done by one of two plastic surgeons with whom she was accustomed of working. She much recommended a new procedure, in which layers of fat were removed through a simple cut from the surface of the abdomen and tucked in the pockets of skin left empty by the removal of the breast tissue. Adding to the operation a cost of around ten thousand dollars. To have some semblance of breasts back, and a tummy tuck thrown in, could be a tempting proposition. I was hesitant on principle: maybe I said, if, after some months or a year or two, I realized that I could not live flat-chested... My stay at Robert Wood Johnson Hospital was supposed to last one night, two nights in the case of complications. I was to come to the hospital for necessary pre-operative tests on the morning of the day before the operation, and then return home. Anaesthesia would last two to three hours. (Five hours, should I choose to have immediate reconstruction.)
In order to maximize my chances of getting reimbursement from our health insurance company, Dr.Wapnir suggested that I should try to submit to the test for the breast cancer gene, which was then still run on a trial basis only. The waiting period at the Philadelphia Center, to which she recommended me, ran at three months, which would have meant postponement of the operation - should one have wanted to make the operation dependent on the results of the test - until fall. Now, the test still had an impressive number of false-negatives, as only the five more common cancer-causing mutations out of maybe twenty could then be discovered. Moreover, there was no guarantee that health insurance companies, at this stage, would reimburse costs even in the case of an incontrovertibly positive test...
Not that getting reimbursement was unimportant. To the contrary, I had begun inquiries about costs with the billing department of Robert Wood Johnson Hospital, and it was becoming clear that I was about to treat myself to an extravagance: the Hospital charged $1,075.00 for one night's stay in a three-bed room... It charged $4,500.00 for the use of the operation room for three hours, which would be followed by use of the recovery room, for which they were asking an additional $1,100.00. There were, of course, pre-admission tests and pharmaceuticals which could amount to an additional three hundred dollars or so - nobody seemed to know exactly. To this would have to be added the fee of the surgeon herself, $1,300.00 per breast, that was $2,600.00 plus $1,500.00 for the anaesthesiologist, and another three hundred dollars for the pathological evaluation of the removed tissues. To which would be added the costs of subsequent out-patient treatments.
My life is dear to both of us, of course, but a quick calculation made it clear that the operation was going to cost around twelve thousand dollars with merely one night's hospital stay. We contacted our Health Insurance Company extensively by fax, phone and mail to learn whether they were willing to cover our costs. Our Health Insurance Company had a policy, it developed, for reimbursing preventive mastectomy in the case of a family susceptibility: it covered the costs of your operation if both your mother and your sister were stricken with breast cancer. At least, here was independent and hardheaded confirmation of the genetic high-probability situation. But the offer is absurd, in a sinister vein! Consider the pivotal role of this hypothetical sister: not only do you have to have one in the first place, but she has to get breast cancer before you do in order for you to get the benefit of reimbursed preventive mastectomy! Lone daughters are a priori excluded from the policy. And imagine sisters watching each other for one of them to come down with a life-threatening disease so that the others might be saved for "free!" Need we add, moreover, that older sisters are at a disadvantage... Thank Heavens, this policy could not be applied to me!
A special decision had to be taken by the health insurance company, on examination of my dossier. The answer was negative on two major grounds: that my risk was not evaluated to be high enough to justify an operation, and that even in the case of a very high risk, as would appear from tests, there was insufficient proof that preventive mastectomy was effective. Both major arguments appeared to contradict the company's announced policy. In the case of a family prone to breast cancer, only one sister in two would have inherited the susceptibility, and none would endure a risk, from statistical evaluation alone, that was higher than my own: a fifty percent chance of having inherited an eighty-six percent risk of breast cancer. And if preventive mastectomy was not deemed effective even in case of high risk determined by genetic tests, why would it be deemed effective in the case of women who are both daughters and sisters of breast cancer victims?
We canceled the date which had been made for a March 21st operation. A twelve thousand dollar plus purchase, we decided, some elements of which looked questionable, warranted some shopping around... We could have the operation done outside the United States. We thought of going to Israel which had excellent doctors and facilities and a favorable exchange rate. To expensive Switzerland, which had a long tradition in treating private patients. To Sweden, where we had friends. To France, my country of birth, which had top-notch people, who might turn out, though, to be difficult to convince to undertake a controversial operation.
The day of March 21st, at the very hour when I should have most probably found myself under Dr.Irene Wapnir's knife, I called a close friend, Friedrich-Wilhelm Meyer-Rudolphi, F.W. for short, a distinguished, retired German gynecologist. F.W. conferred with his colleagues and, after a few days, came up with his man: Dr.Werner Audretsch, recognized as one of the two or three best breast surgeons in Germany, at the Gerresheim Hospital in the city of Düsseldorf. Fax and phone number of his "ante-room," guarded by a Frau Maes, were also provided. A few days later, I had an interview by telephone with Dr. Audretsch in English, which he speaks very well. On the mere account of family risk, he agreed that the operation was justifiable, but wanted, of course, to perform a thorough examination before making a final decision. He had not, himself, ever undertaken preventive bilateral mastectomy on grounds of risk alone, but was well versed in the research being carried on in the United States. He insisted upon extensive tests before any intervention, especially Magnetic Resonance Imaging, which he deemed indispensable. As for the length of my stay in the hospital, that was a decision that would remain with him, and that he would make according to his own judgement of my recovery, he said - not without hauteur - but he would take into account, of course, the fact that I would be paying the costs of the hospital stay out of pocket. He was appalled at the American practice, he added, of sending "poor women" on their way, sometimes to a motel, a mere day or two after having a mastectomy. One to two weeks seemed to him a reasonable length of stay, but he hinted that he might be able to bring it down in my case to five or six days, provided that afterwards I stayed around and visited the hospital daily on an outpatient basis.
We then secured through Frau Maes, and with some trepidation, information about the costs, especially given the prospect of a protracted hospital stay. An estimate arrived by fax on the 5th of April: cost of the operation was estimated at between DM4,300.00 and DM4,500,00, which amounted, at that day's currency exchange rate of 1,37DM to the dollar, to between $3,140.00 and $3,290.00 (it would be far less at today's rate). If this was Dr. Audretsch's fee, we first thought, it was a stiff one. No other costs were given for the operation itself. But Frau Maes explained that this sum represented indeed the whole cost of the operation, including Dr.Audretsch's fee, pre-operative visits and tests - except the Magnetic Resonance Imaging - injections, dressings, removal of stitches, etc. What about the use of the operation room and of the recovery room (that together would have cost us $4,600.00 at Robert Wood Johnson Hospital), I asked. Frau Maes seemed surprised at the idea. They were included, of course! Not included was the anaesthesia, which ran around DM600.00, or so, ($438.00) but might be more, in the event of any special needs, and the pathological testing of the removed tissues. Cost of the operation, minus the anaesthesia, amounted to over four thousand dollars less in the German hospital than in the New Jersey hospital!
As for the costs of the hospital stay, they were fixed at DM435.00, that is $317.50 per night for a bed in a three-bed room (instead of $1,075.00 per day at the Robert Wood Johnson Hospital!) I could also stay in a two-bed room for DM547,00 (this four hundred dollars), or in a private room for DM608.00, that is $443.80! A private room at the Gerresheim Hospital in Düsseldorf, reputedly the most expensive city in Germany, cost less than half the price of a bed in a three-bed room at Robert Wood Johnson Hospital in New Brunswick, New Jersey - just about the cost of a double room at the Ritz!
There were going to be travel costs, two or three weeks of hotel and restaurant expenses in an expensive area of Europe; the Magnetic Resonance Imaging test would not be cheap either (I had decided by then to have the operation with Dr.Audretsch, and it was clear that he was not ready to relent on this matter of MRI, so I did not trouble to make exact inquiries, and, for the money, a good test was preferable to an overpriced recovery-room) and much would happen that was unforeseen.
Dr. Audretsch is rather tall, thin, about my age, looks younger on account of delicate features, wears glasses, does not talk very much. The discussion is short. He knows that my mind is made up, and so is his own, pretty much, from what I have told him. A Sister Elfriede, who is in assistance, almost certainly a Catholic nun, armed with a Polaroid, takes the most unerotic picture ever of my bosom. Examination is to the point. A sequence of short, light touches, ending with a long, scanning glance, at several feet's distance, he sitting, I standing. Casually, he says: "You do not have cancer," with the exact intonation one would use to say: "I think it has stopped raining!" an intonation which conveys, even beyond the meaning of the words, the fact that one has just had a protracted look into the distance, through a window, and to which dogs, for instance, are utterly sensitive. In contrast with Dr.Wapnir's human warmth, and her way of taking charge, Dr. Audretsch has - to me - the slightly distracted expression which is, in some people, and most probably in his case, the outward sign of hard intellectual focus.
I still hold my breath. One cannot help thinking, at this point, in this spot, at the many times (how many times a week? a day?) when the verdict is the opposite, at the hearts that skip a beat, at the dark punches into the abdomen. At the women who stood in this room, at my place. Dr. Audretsch came up with something he had mentioned during our telephone conversation but which I had all but forgotten: in order to further decrease my risks of getting breast cancer, he intended to take out, on both sides, what he calls "the first level of lymph-nodes." I tell him that I am worried - from past experiences of my friends - about restricted mobility in my arms, and also about the possibility of swelling of the arms, and infections after slight injuries; I would hate to have to give up gardening! He assures me that nothing like this will happen, not with the removal of the first level only.
He also gives me an additional reason why, in my case, given the high probability of a genetic risk, preventive mastectomy, rather than close surveillance, seems to him a good idea: my breasts, which are not at all pendulous, and which he calls "hypoplastic," with breast-tissue closely adhering to the chest wall, are practically impossible to survey satisfactorily through mammography. Tumors close to the chest wall would remain undetected. This, nobody had told me yet. Another of the hard truths that is being dealt out reluctantly in order not to cause alarm among women.
My residual risks of getting breast cancer after mastectomy, and after removal of the first level of lymph-nodes, he put at 1.4 per cent which was quite a bit better than the "anywhere between one and ten per cent" chance I had been given earlier. "Anyway," I said, a little bit in jest, "if I still get cancer after that, it will mean that it was a good idea to have the operation." "If you get breast cancer," he said sternly, "the operation was useless." The statistical risk of normal women to get breast cancer in their life-time, he put at fourteen percent, as against the eleven per cent of Dr. Wapnir, the 12.5 percent of the American Cancer Association. That is one woman in seven. "That's terrible!" I said. "Yes," he said.
Possible dates for the operation are discussed, with Sister Elfriede. He would like a June date. This works well with our plans, which were to go, straight from Germany, to our house in Greece, and come back just in time for the operation. At which point Sister Elfriede comes up with a problem: I would have to come back to Düsseldorf at least ten days earlier, for the blood-lettings. What blood-lettings? It turns out that, just as Dr. Audretsch will not undertake an operation without a preliminary MRI test, he will not undertake one without a ready supply of one liter of the patient's own blood. This entails not one, but two blood-lettings, with a necessary waiting-time of one week between the two. I am reminded of Dr. Wapnir, who smiled when I asked if I would get a blood-transfusion: blood-transfusion was not necessary in the case of mastectomy, she said. I could have the first blood-letting the following day, offered Sister Elfriede, and then the next one a week from now, and as the blood had to be used within three weeks, the operation would have to be advanced to Thursday, May 11th, exactly four weeks from now. Dr. Audretsch found that the new schedule fitted him just fine, recommended that I eat and drink well and rest myself in Greece, and took leave.
Leaving me with Sister Elfriede to explain this new necessity of the blood-lettings to my husband for, if these presumably presented few problems to a resident of Düsseldorf, they meant for me, for us, that I would have to stick around the area for one week, in order to get in my second blood-letting. "But, in America I was told that blood-transfusions were not necessary during mastectomies!" "They are not," Sister Elfriede said, superbly. "We do not cut people, either!" "But then, why have these blood-lettings?" "Because Dr. Audretsch does not undertake any operation without a supply of the patient's own blood." "But he doesn't need it!" "One never knows!" "For this rare case of an emergency, surely you would have blood ready..." "We will not use any blood but the patient's own !" "In case of accidents..." "Mastectomies are no accidents!"
It was no use..My husband laughed at this bright example of German rigidity. In view of our special circumstances, Sister Elfriede arranged for a special, early blood-letting at the hospital the following day. "Couldn't I at least have the second blood-letting sent to you by airplane?" This would be difficult. The blood had to be kept at an even temperature during the whole journey, which could not be guaranteed: unless a nurse traveled with the blood. And it would have had to be transported on the ground by an accredited ambulance. "There have been many problems with blood. We do not want anything like this to happen to us here!"
There had been, indeed, in recent years, resounding scandals in Western Europe with HIV-tainted blood-products. One laboratory in Germany had been found to have actually knowingly recycled HIV-tainted blood. A large proportion of the population of French hemophiliacs had been condemned to death by AIDS through routine plasma transfusions in the early and mid-eighties - the highest authorities, up to the Government, having then dismissed the risks caused by the new illness. But why not, then, take the more relaxed attitude of American hospitals: the risks of my getting HIV from a transfusion of blood not my own were negligible, the more so if the transfusion itself was unlikely! This would be discounting the historic, mythical, mystical German awe of blood... Moreover, blood is a commodity in high demand everywhere, and my liter of "O-negative," universal-donor-sap would not remain unused...
Whereas, at Robert Wood Johnson Hospital in New Brunswick, New Jersey, I was supposed to come in the morning of the day preceding the operation in order to take the necessary pre-operative tests, then return home and come back early the following day for the operation, we discovered to our surprise that the Gerresheim Hospital in Düsseldorf expected me to check in at the hospital for the tests and to stay right through for the operation, which was scheduled for early afternoon of the following day. Hospital-stays being reimbursed without question, if according with a doctor's recommendation, German hospitals are welcoming indeed. Being private patients, though, we had to pay ahead, in full, right on the spot. Emboldened by this first step, my husband decided to splurge on a single room, instead of the two-bed room we had reserved.
The department of senology, as well as the offices of Dr. Audretsch, and the corridors of the Gerresheim Hospital generally, might have struck one as particularly America-friendly, if not America-worshiping, territory. Andy Warhol posters, reproductions of works by American artists, many famous photographs of American subjects. From the terrace of the department of senology, one could see the octagonal romanesque steeple of the Church of St. Marghareten, white and red, among the trees. There, Dr. Audretsch came to greet us, and mentioned, briefly, that by close scrutiny, something unexpected had shown up on the MRI, at the six o'clock position in the right breast, one could not tell what it was, it might be, he said, given the position, a case of DCIS. (DCIS - Ductal Carcinoma In Situ) is a pre-cancer, a filling of the milk-duct with cells which are cancerous in nature, but the proliferation of which is therein contained. Additional mammograms and ultra-sounds were therefore in order, he announced.
Dr. Audretsch, as it was revealed through posters, and talk, and flyers, had a large and ambitious project underway, and already going: the creation, at Gerresheim, of a Euro-Breast-Center, with its own buildings and organization, English-German and euro-lingual, with a highly specialized, international staff and a concentration of state-of-the-art comprehensive means of diagnosis, particularly diagnosis "with no radiation burden;" prevention, oncological care, reconstruction, "particularly with use of the patient's own tissue," psychological counseling etc. There, doctors from all over the world were to be invited to learn about the newest findings and procedures in breast health, reconstruction and oncology. The Institute was to be open to private patients from everywhere, as well as to patients with general health insurance.
My room at the hospital, of which I had just taken possession, would have been deemed immense by all standards. It was high, airy and you could have danced in the toilet. There were high windows to the West running all along one wall. It was on a high floor, and the view gave on a large expanse of grass, and on the helicopter landing pad. There was, at a safe distance from the landing pad, a young chestnut tree covered with pink, candle-shaped blossoms, and the first moving creature I saw as I looked down onto the lawn was a rabbit. The rabbit was busy enlarging the entrance to a warren which was near one of the lights of the landing pad. I was to count up to a dozen rabbits in the days to come, hopping around at twilight, but only one of them was ever working at the warren. On the wall, there was a framed water-color painting left by one patient and dated April 29, two years earlier, showing exactly the view from the window, including the chestnut in blossoms, and the rabbits. There was also what looked on the picture like of a pair of severed breasts lying in the grass. I went to have a look out of the window to verify what might be thus represented, and spotted two large, round, light-colored concrete slabs, probably lids of some kind, maybe to some man-holes, each one fitted in its center with a black knob, in the shape of a chess-pawn.
A last visit with Dr. Audretsch before the operation, in the presence of my husband. The operation was once more explained, and the organs to be taken out were detailed. Seemingly crude patterns were painted with blue and red felt pens on my breasts, to indicate the lines of cutting. They were not, like the ones that Dr. Wapnir had drawn on me with her fingers, straight, but elegantly curved up towards the armpits, like wings. Fat was to be scraped off the removed skin and shaped into a décolleté, whatever this word may mean to me, for the rest of my life. Despite the clearly reassuring signals from mammography, ultra-sound, and manual examination, Dr. Audretsch was still non-committal about the now even more mysterious "unidentified object" discovered by Magnetic Resonance Imaging.
A nurse, not Sister Elfriede, took a Polaroid picture of my chest with its New-Guinea-style tattoo. At my request, my husband would later take another one in my room, for private purposes. He confessed that he had found the scene of the breast painting erotic. I was ordered not to take any food or drink after dinner, and allowed water, but none after nine o'clock at night. The following day, I was not to take in anything except a glass of water in the morning. A brunette, sharp, possibly Armenian nurse gave me the ritual underarm shave while eagerly interrogating me about the operation I was going to have: the news had gone around the ward, I did not have cancer, right? Yet I was having mastectomy? This was never done here! And I came from America? Women here, German women, were much too vain to have an operation like this done! It was less a matter of vanity, I suggested, than of ignorance, it was a rare operation in America, as well. She found the whole idea fascinating, she said.
The night-nurse arrived as I was watching CNN. The night-nurse was Vietnamese, and had relatives in New Jersey. She patted my arm fondly: "You do not have cancer, do you?" she said conspiratorially. "If you have this operation, you will never get breast cancer, right? Don't you want to have the curtains drawn? You really like to sleep this way? Do you want a sleeping pill?" I like to sail through the night with unobstructed windows. A sleeping pill would have been the last thing for me to desire. This was a time, should anyone wonder, of intense happiness. You do not redesign your body, and possibly reshape the very extension of your terrestrial life, without immense optimism. You are done with darkness now, with hesitations, with questions and with fear. I woke up around one o'clock, went to the toilet, had a good look at those tattooed breasts and went back to stand by the bed, holding them, and looking through the window into the clear night. To-morrow, by this time, they would be gone. They felt warm and alive, with this peculiar, animal springiness which makes them feel individuated, and even foreign to the body. Feeling this through one's own touch is one of the primary female experiences. It is a modest, if satisfying pleasure, and not easy to relinquish. I was interrupted in this intimate leave-taking by my Vietnamese who slithered in worrying why I was not in bed. I assured her that I was perfectly fine, clambered back into bed and let myself be tucked in, and have my hair perfunctorily stroked, feeling like a little girl who had been caught pleasuring herself. Through the glass of two doors, I saw her pace the corridors. Three times, that night, so far as I was aware, she came in to check on me.
On May 11th I got up early, to watch the rabbits. It was a day with nothing much to do, without meals even. I had to take a shower minding not to erase my body paint. Was given a hospital-gown to wear, which I put on the wrong way, thinking logically that access to my bosom had to be left free. This allowed me to look a few times more at the site of the planned modification. Painted, whether the occasion had been erotic or not, it had been staked out for a new purpose, promised to be given away, in limbo, mine no longer. I was given a pair of tight, white, elastic stockings, to guard against thrombosis. The day was lightly cloudy. My husband came carrying a pink impatiens which he had hurriedly picked up at the outside display of a super-market, on his way over. I was given a pill to take around noon, that would put me to sleep within a half hour. Went to have a last look in the bath-room mirror. Went back to bed and with fateful expectation, swallowed the pill, with which I was allowed a gulp of water. This being the only thing that was asked on my part - this most important event of my personal history, this act of faith and of the will required no other participation from me than sleep. Euthanasia, properly performed, must be like this.
The rest was trivial and anti-climactic - the wheeling down along the corridors, the elevator, dark nothing, a glimpse of lights above my head, and seamlessly, a feeling of cold and, waking up, looking to my left side, the handsome, puzzling profile of a dark-haired young man with heavy eyebrows, in deep sleep and in need of a shave, and almost immediately someone rushing up to me to ask me how I was, and I said: Mir fröstelt! and thought: I can speak German still, and I have remembered this unusual word, and used it in the grammatically correct way, in the passive-reflective form and with a dative case (like saying: "It chills to me!"), and I concluded that I had suffered no brain-damage from the anaesthesia.
And immediately, that very minute, briefly, the face of Dr.Audretsch hovered above me, saying in English: "There was nothing wrong at all in your right breast, it was just a lymph node at an unusual place, everything went very well, you are okay!" Something that was so sudden and short and so conforming to what I longed to hear made me ponder soon afterwards whether it had truly happened, whether it had not been some awakening-delusion. Besides that, I still felt cold, which scared me, and thirsty and hungry.
The whole affair had taken about three and a half hours, my husband said. No blood had been transfused. I was soon well enough to sit up - but this was only because I was still under the effect of local anaesthetics. I had a numbing heavy dressing around my chest and after having bolted up several times crowing that I felt no pain at all, that I felt perfectly fine, the pain came - a sharp, burning, tearing sensation, which subsided after I had laid myself down again. The heat in the room was pumped up, my husband left, I watched some television, was given a bed-pan, was tucked in by my Vietnamese, slept.
I woke up once or twice, elated that it was all over, still doubting on and off whether Audretsch's apparition above my head had been real. My sleep was deep and light. Then, the dream came: I was outside the house, on the Island, taking leave from a friend, fondly, at twilight, although the spatial situations were reversed: he was standing on the side of the house and sea and I, on the side of the drive-way and mountain. Nevertheless, he was the one leaving and there was a final, erotic sadness in the parting, he had an earnest mien and held himself stiffly. I was holding both his hands in mine, not wanting to let go, and he seemed to tell me that I should not worry, that I was okay. He was wearing a darkish, almost black tee-shirt with a large red spot all across the chest, like a dully glowing stain of blood. The man was Peter, a surgeon friend from Stockholm, about whom we had thought briefly when the idea came up of having the operation abroad. I woke up remembering where I was in a flash, recognizing, through my uncurtained windows, that the spot of blood on the man's chest was the large, gibbous moon. It was rust colored, like dried blood, and low in the clear, dark sky. I struggled to keep my eyes open, but after this amazing glimpse, relapsed into sleep. The bleeding chest was mine, projected onto another - those hands, which I could not get myself to let go - well, we know what they stood for...
I woke up early the following morning, noticed that I was without a watch, put on the TV in the hope of getting a clue as to the time, and was onto a cartoon channel when Audretsch with staff stormed into the room. He seemed pleased that I was awake and even amused that I was watching cartoons. He delivered his news rapidly, too fast for me to enjoy and even follow: "As I had told you yesterday," the strange object that had shown up on Magnetic Resonance Imaging was, in fact, nothing else but a stray lymph-node, which should not normally have been present in the breast, but there it was, or rather, it had been. He had taken the liberty to excise a related lymph node higher up in the armpit - not one of the first level of lymph-nodes, which he was removing anyway, but one of the second level - to make doubly sure. The amount of tissue taken out of each breast was almost exactly the same, three hundred fifteen as against three hundred seventeen grams. All had gone well. I was doing very well, and I told him that was the way I felt. The removed tissues were now being tested and there did not seem to be any reason to worry, there were some pathological features like cysts and lipoma but nothing that looked malignant. The stand with the glucose-bottle, to which up to then I had been hooked up, was pushed out behind him.
This day, Friday, was a simple one. Lying in bed, curiously well. My husband came with champagne, with newspapers and Der Spiegel. Due to the heat in the room, the impatiens had collapsed ignominiously, it seemed dead, in fact. He watered it; he never gives up. The weather was sunny and bright, with high clouds. I got up to check on the rabbits, on the chestnut tree. I walked down the halls, and onto the terrace. There were two plastic bottles, each one connected to one of the former breasts by a tube through which a dark, rusty liquid was dripping. When I got up, which I could do in the first days only with a strong embrace from the nurse, I had to gather these two bottles and carry each one on either side in its own bag. There were sharp pains: whenever I moved, and especially when I moved from a recumbent to a sitting position, also from a sitting to a standing position, and from a sitting to a recumbent position. There were pains even when the nurse merely cranked up or down the back-rest of the bed. There was no pain at all in-between. I could ask the nurse at any time for a tiny glass of a transparent pain-killer, which she pleasantly called Schnapps.
By Saturday, the impatiens, well watered, had recovered and was again in full splendor. I got a new nurse, a young man from Lithuania. He would bring me the painkiller and caution me that I was poisoning myself. He seemed, like everybody here, fascinated by America, where he planned to go on vacation as soon as possible. Because the process of getting up was painful, I spent most of my time on my feet, and would feel nothing. It was all due, he told me, to the liquid accumulating under the wound and moving around loosely in those empty pockets, according to the laws of gravity. I could not, of course, lean on either arm to aid any movement. I would spend four days after the operation at the Gerresheim Hospital, six days in all. I was without anxiety now. The many levels and gears of fear, the fear of a quarter of a century since my mother's illness, the fear of a year and a half since my sister-in-law's illness, the fear and hesitation of eight months since reading the article in the Herald Tribune, had been brought to a slow braking and stand-still. This has been, psychologically, a delicate maneuver. I have done it on my own but, as the operation will become more common, it will no doubt spawn a specific business for psycho-therapists. It is by no means necessary that everybody should go through the same agonies unaided. The vacuum left by the fear is now to be filled by - using an outmoded term - the "spirit," which I think is a one-word-way to designate the peace and freedom of the body. I was up almost all day on Sunday, which was a magnificent day. At night, I cranked my bed down too flat, hoping to get a deep sleep, and had my worst bout of pain the following morning, when Audretsch came to make his early visit, and when I intended to ask him to release me. Still, he considered that my dressing could probably be taken off by the next day, or the day after, his condition sine qua non for letting me go free.
On Tuesday morning, in the presence of his assistant, Dr. Daso, Dr. Audretsch took the dressing off my chest. I looked intently in front of me, into the direction of the window, consciously smiling. I did not dare to look down onto my freed body. He urged me to, a little bit scoldingly. He didn't want me to be coward now. I saw. The flatness. The curved scars moving upward toward the armpits. The expanse of white, surprisingly well mended skin. It made me think of the trapezoid décolleté in some formal portraits of ladies of the late, Northern European Middle Ages, where the bust is pressed and flattened by the stiff outer-garments. I wanted to say: Schön! Beautiful! I dared not. I feared that he would not believe me, that he might take it as an outré cynical compliment, or as a defensive, self-deluding maneuver, or worse, and alas likely, that he would question my sanity. I feel sorry, in retrospect, for Dr. Audretsch, who may be the Leonardo Da Vinci of mastectomies, and who quite probably found his work schön, himself, in fact, I read from the expression in his face, when he removed the dressing, that he liked what he saw, yet only rarely must he hear the expressions of spontaneous praise that are so gratifying to artists... Yet, truly, it was not a shock to see myself, it looked better than anything that I had expected, the upward curving lines especially were graceful, optimistic, one might even say, inspired. I fully recognized myself: this was me, modified and unrepentant. Having allowed me time to achieve this recognition, he put on another, lighter dressing, which I was to be careful not to wet when I washed. The drainage tubes issuing from each wound were left in place and fitted with small, portable plastic bottles. A blue canvas bag was provided for me to carry them with me. I was to come back to the hospital every morning, for a week or so, until it would be time, when the liquid stopped leaking out, to remove the bottles.
We walked over to the nearest restaurant, I toting my bottles in their blue canvas bag, feeling light and euphoric. It was a most beautiful day. We had a lunch of asparagus-sauce hollandaise, boiled potatoes and Rhine-wine, sitting at the corner table, in the sunny window at the Jägerstube: it was the season of asparagus, an almost hallowed time in some parts of Northern France, Germany, the Low Countries; light, sandy dirt is plowed higher and higher around the plant as it grows, to keep the stem white and tender, and delicate in taste. I felt that I could look at the world around me with a certain confidence that it would not be untimely pulled away from me, as had happened to my mother.
The first night was less thrilling as I sat in a hotel room, with my neck at an angle, propped up by pillows. I had to cut open lengthwise my L.L. Bean night-shirt as I could not have raised my arms enough to put it on any other way. For the next week, my husband was to help me put on and off socks, shoes and blue jeans. He combed my hair. I soon realized that, because of my own limitation of movement, and the practical problem caused by the hanging bottles and their tubes, and the often cold and rainy weather, my useful wardrobe was greatly restricted. I would wear only baggy blue-jeans, and a superposition of top-shirts whose number and weight depended on the day's temperature, and through the flaps of which my tubes could be passed.
Early every morning, usually under the rain, we made our way to the Hospital. All my life, as a visitor, even to maternity wards, I had had an absurd fear of hospitals, which curiously had failed to act up in recent months, when I went to Robert Wood Johnson, or to the Gerresheim Hospital for the operation. But there it was, suddenly resuscitated, on my first day as an outpatient: the knot in my stomach as we got closer to the building, the strong desire to turn back, the shortness of breath... now, when I had but to get my bottles checked, and have new ones screwed onto the caps, which would take ten minutes, every morning. I carried my bottles, being careful to change hands often, and not to burden the right side, which tended to drain more abundantly. It was mildly entertaining to watch the droplets descend the transparent tubes, farther spaced and lighter colored by the day, until the liquid in the bottle was but a spoonful a day, with the look of healthy urine.
On Monday, I gave a yelp when I was relieved of my left bottle by Dr. Daso. What I had thought to be an accumulation of fluid on both sides of the sternum was described to me as my "décolleté," fat having been scraped off the inner side of the discarded portion of the breast-skin and pushed there, so as to configure, hopefully, a shapely cleavage, the not to be kept promise of a bosom. On Tuesday, the right bottle and the stitches were detached by Dr. Audretsch himself, in a few, deft gestures I had hardly time to notice. I could, he said, have reconstruction any time. A new, paper-thin dressing was applied. The results of the biopsies had arrived from the laboratory: it turned out that there was, present in my right breast a bunch of cells described as anomalous, but which did not reproduce, and were therefore not cancerous. What did it mean? That they could possibly have become cancerous at some later time - or maybe never. At any rate, they were gone.
We flew back to Greece. Had I any worry about the availability of medical advice pertaining to my case on our island, it would have been dispelled the day after our arrival in the unexpected shape of our friend, the Swedish surgeon, the man of my most significant dream, bolting out of a café, frantically waving, at the sight of our battered Volvo. Neither of us knew that he, or we, would be on the island at this point in time. Nor was there anything unusual about it - he owned a house in one of the mountain villages - except for the fact of his sitting in this particular café, and happening to look up just as we were passing. Peter himself had just arrived, and was to spend three more weeks on the island, plenty to give me a feeling of great security, although I took little advantage of his expertise, and could not even bring myself to tell him about the operation until after two weeks, when I wanted to know whether he thought it advisable for me to resume swimming - Dr. Audretsch having recommended that I wait two weeks, and Dr. Daso, three. Peter was briefly stunned, for the operation seemed to him highly unusual. He then discussed it, of course, with interest, for he had performed mastectomies himself, and he seemed to agree with the choice we had made. He exerted himself to dispel any shame I might have had about my hypochondria by displaying for me, on his lean, well-toned lumbar region, the scar of a large excision which he had had inflicted on himself one year earlier, to remove a perfectly benign mole. Hypochondria is a large club of which physicians, he assured me, were prominent members. I was particularly relieved to find out that he, a man of the art and an attentive friend, and well, a man, had suspected nothing up to this point, despite frequent visits, parties and picnics, and despite the fact that I did nothing in particular to hide myself, except that I did not join in the swimming.
Nobody, as a matter of fact, noticed the absence of my breasts or, during the first weeks, the slight limitation in my movements. I felt a little anguish only once when another Swede, warm-hearted Maria Lansing, hugged me tightly on first seeing me and I felt her breasts fail to meet mine at the point in space where they should have, and noticed her short puzzlement. I do not, in general, embrace friends so narrowly, so the problem never occurred again. Nor, strangely, did the absence of a feeling organ ever come to my consciousness when I embraced my husband.
One week after returning to the Island, having shuttered out the day-light from the bathroom, I took off my light bandages: the scars looked good and, in this very dimmed light at least, the "décolleté" managed to convey the illusion of the gentle rising of two separate mounds. I then took a shower and was shocked by the absolute numbness, the foreign feeling of this flat expanse of skin where highest sensitivity had resided. Whether the water was cold or hot, I felt nothing. I did not even feel the water. This was not an easy feeling, but it had to be gone through. I did not spend much time, in the following weeks, admiring my scars, for the sight of the armpits, where the drains had been inserted, and particularly the right side, where one additional lymph-node had been removed, and where the skin was deeply pursed, was perturbing and I decided to keep it out of my mind.
Three days after Peter had given me his approval, I took my first swim. My breast-stroke went okay, crawl and back-stroke were at first severely restricted, even painful. My second swim, and the following ones, I obliged myself to take naked, alone, and to sit naked on the beach, doing as I had always done, and almost from the first, any feeling of unease disappeared. Also, from day to day, the contact of the water awakened sensitivity in the wasted zones. I kept with me, to cover myself in an emergency, a short-sleeved jacket of terry-cloth, now four decades old, which my mother had cut and sewn for me when I was six - it served me as a robe then, she had made it large enough, she had said, so that I could continue wearing it as I grew up! - when she first took me for a vacation by the sea, that was in 1955, at a camping site on the French Riviera... The cloth has not faded a bit. It shows a succession of vertical stripes: red, dark green, pale yellow, clearest peppermint, medium yellow, peppermint, orange, bright green, red... Such I had imagined Joseph's coat to be.
There was, in those days, great numbness in the operated area and sitting for long hours in front of the computer only worsened it, especially on the right side, about which I was beginning to feel alarm at the thought that some nerve might have been severed. I took to putting pillows under my arm while typing, and inventing devices to force me to shift the position of my arm, even going to bed hugging a pillow, which was most comforting.
By the end of June, fifty days or so after the operation, my swimming was back to normal, I could reach unaided the clay pots on top of the closet, and I spent several days sawing off branches with a hand-saw to clean out the juniper trees. The numbness was still present, if slowly waning. I accustomed myself to touching the area very often with full hands, and every time when I changed clothes, to get re-acquainted, and to position my spine so as to avoid the creation of concavity as much as possible. The double roll of fat grandiloquently called "décolleté" had a reassuring effect in these palpations.
The final bills arrived from Dusseldorf, detailed to the last Pfennig: the operation itself cost DM4,798.72, that is $3,500.00 Of this, the fee of Dr. Audretsch was DM3,917.00, that is $2,860.00, somewhat higher than Dr. Wapnir's projected one would have been, but for an operation that included removal of some lymph-nodes and a good measure of plastic surgery. The anaesthesia cost DM766.39, that is $559.00. The MRI, $1,500.00. I felt a great "high" in my mood during the months following the operation - it had been an awfully hard decision, and now it was over. My dear friend Licia, a psychotherapist, put it aptly, if a little bit perfidiously: "You believe that you've made yourself immortal." Women have been generally supportive of my decision, most of all, women like her who themselves are or have been engaged in the struggle with breast cancer.
Then, lost my dreams!
It took me a while to notice. I had been, all my life, an active and poetic dreamer. Yet, despite the forceful dream in the night which followed the mastectomy, for almost two years, my dream-life was to remain singularly depressed and, without pretending to propose a theory of what triggers dreams, I would guess that the absence of stimulation from the nipples during sleep must have had something to do with it. One could imagine that the loss of nipple sensitivity and response during sleep depleted dreams of their more voluptuous feelings and thus made them less memorable. Or, could it have been a protracted effect of anaesthesia? I knew that I still dreamt, but my dreams seemed flat, remote in the morning, impossible to remember. This loss, to me, appeared stunting. The loss of the nipples and of their peculiar sensitivity was more difficult to take, in the long run, than the embarrassment at the loss of volume of my upper-body. I would look at other peoples' bare chests, even men's, and feel an odd reassurance at the sight of their intact nipples, and sometimes a sadness at the thought of their unimpaired potency to dream.
Since about five weeks after the operation, I have not experienced any pain. Once out of the hospital, except for an occasional aspirin, I took no pain-killers. My freedom of movement is total. There was, for a year or so, a slight pulling under my arms, due to the removal of lymph-nodes, when I made an extreme stretch. This is gone and I am in no way restrained. All puckering was gone from my armpits a few months after my operation. There were occasional feelings of numbness, which could last for hours, on my right side, especially after carrying heavy loads, which have now entirely subsided. Only heavy straining can still call them forth, and then, they don't last very long. I never experienced it in my left side, although there has been occasionally a slight feeling there, far below the threshold of pain, or even numbness. For several months, though, when I might not have otherwise given it any thought, these feelings kept reminding me of what I had done to myself.
But, contrary to what I had feared, the area of my breasts is not at all insensitive. It is sensitive to hot, cold, to the touch, to kisses. In fact, my husband observed that my breasts are only partially gone: the breast tissue has disappeared, but the skin remains, as soft and sensitive as before, and more so than almost any other on my body, even in the absence of the nipples. Oh, I would not say that I spent much time admiring myself in the mirror during the first year. I did avoid dressing and undressing in front of my husband. Even into the second year, I remember sitting painfully cramped on the beach, in my swimsuit, next to my stark-naked friends. "Rebirth of the body," I announced to the Swedish doctor in one of my letters. I had meant to say: after the confinement of winter, but indeed at some point, during that summer, I would be hard put to say exactly when, the shame vanished.
I now look at myself every morning, every evening, naked, in the mirror, equanimously, as I always did, and what I see is not a maimed body. Some might call this denial. Yet - I look at this flat expanse of my chest and I do not find it ugly, or repellent. My face, somehow, "goes" with this chest, there is a harmonious continuity from my face all the way down my body. There is, in all human beings, when they are bare-chested, a touching symmetry between the eyes and the nipples, and this symmetry, of course, in my case, is gone. Yet, and this may sound scandalous, absurd, or even mad: this breast-less body is not devoid, in my eyes, of a certain pure and abstracted beauty. If it is indeed monstrous, it is so in the manner of some magical, not quite human creature - a fairy, a mermaid - an Amazon. I can imagine that a sexually interested man, or woman, might not be turned off by the first sight of it. The scars, as designed by Werner Audretsch, are probably responsible in large part for this accepting feeling: almost white, now, they have a friendly, smiling, upward curve.
Undeniably out of a need to compensate for what is, after all, a major disfiguration, I have tended to pay more attention to my body since my operation and I regularly practiced yoga, which I had learned in India ten years before (Everything, it goes without saying, divides in "before" and "after.") I am able to do, with ease, some fairly advanced postures. Millimeter by millimeter, I have achieved fluency in clasps and stretches that at first seemed all but impossible. All in all, my body is probably in better shape than it was four years ago: it has a firmness which to my own touch is a welcome surprise. Yoga gives one muscles in depth. The muscles of my upper body have tended to reduce to bare visibility the effect of concavity left by mastectomy. They don't compensate for it. Yet, if I had breasts, I would pretty much have the best body I could have at fifty.
And, possibly as a result of practicing yoga, something indeed unexpected has happened: maybe partly as a consequence of the rerouting of pleasurable nervous circuits away from my nipples, I have tended to experience during the last year and a half, just as my dreams were being restored to me in full spectrum, exquisite feelings in my spine and other parts of my body, unaided by any drugs, but clearly sexual in origin. These feelings of pleasure do not always remain under the control of my will, and they have been on occasion so intense - for instance, when I was lying in bed or sitting at my work-table and feeling like soft waves of warm water running up and down my body, and a warm glow at the back of my head - that I have actually once turned off the electrical supply to our house, wondering if these extraordinary sensations might not be the effect of some leak of electrical current running through the carpets or the furniture. I am almost certain that I am not mad or deluded, although I would hesitate to bring my case to a psychiatrist!
Might I have had the same experience if, while still having my breasts, I had practiced yoga with the same regularity? It is remarkable that a spot of particularly intense stimulation has tended to occur on my spine, between the shoulder-blades - at the level where the nipples used to be situated. What will happen to me next? Levitation?
Is there something strained in my attitude? Is this somewhat "ecstatic" existence fueled by a compulsion to compensate for my loss - to prove to myself that I had not been wrong by having the operation? That it makes "no difference?" Of course it makes a difference. At every moment of every day, in every situation. I am not the same person as I would otherwise be. Nor am I the same person as I was four years ago. Still, as I feel it, my closeness and physical intimacy with my husband has remained unaffected, and our sexual activity has remained what it used to be, with, always from my point of view, positive changes which came, probably, from increased efforts by both of us caused by the desire to compensate for the absence of my breasts. Ours has been a deeply physical relationship, based on a trust that is even more physical than mental, namely the conviction that, come what may, "it" will always work - "it" being the particular form of what we desire, need and enjoy - and, except in extremely rare occasions, "it" indeed has always worked. We are, after all, tremendously adaptative. Whatever diminution of pleasure my husband may have experienced as a result of the absence of my breasts, and it would be mildly insulting to my former self if he confessed to no such thing, it must be small in comparison with the stress an eventual diagnosis of breast cancer a few years down the road would have brought upon both our lives.
I have a few close male friends, straight and gay. They know about my operation. Almost each one of them has had a first reaction of unease, or shock. They would hardly be close friends if the news had left them cold, yet their reaction, however well concealed, was slightly unsettling. None of them, need I say, was or had been a lover, and my having breasts or not should have been, presumably, on an emotional level, indifferent to them. Yet, beyond this initial shock, my relationship to these men, their relationship to me, have not changed - except in the natural way friendships have to weave themselves into our lives in changing patterns, of changing prominence. Certainly, this should be no surprise: it would be a slander of decent men to surmise that they would change their attitude towards a woman because of her not having breasts!
A friend, one of the great writers alive, wrote to me, admirably: "...I could never do what you have done. I know that we all die, but the difference here is that dying is something that we must go through."
He knows, but what he knows is something I do not yet care to know.
Anne-Marie de Grazia