Preface to My Mother's Diary
2008; Lippincott Williams & Wilkins; Volume: 30; Issue: 7 Linguagem: Inglês
10.1097/mph.0b013e31817525b1
ISSN1536-3678
Autores ResumoMy brother David died over 50 years ago and before my birth. My parents rarely spoke about David as we (the 4 siblings) grew up. He was certainly not forgotten, but I think the memories were too painful to discuss. As a result, David's life and death rarely entered my consciousness. This, of course, contrasted greatly with his influence on my parents and his twin brother Josh. My mother, now 81 (my father died 8 y ago), recently shared with me the journal that you are about to read. It unflinchingly documents the journey they all took from the time of David's diagnosis with a Wilms tumor in the year 1955 to his death in the year 1956. On a personal level, I was incredibly moved to go back in time and experience an event that profoundly altered the lives of my parents and brother and indirectly affected all of us. The historical details and the vivid description of the emotional toll on my mother, I think, offer insights to all of us in the field of pediatrics. For these reasons, I asked my mother for her permission to try and get her journal published. A very private person by nature, she immediately agreed, as long as “you think it will be of help to others.” Barton Kamen, MD, PhD, the editor of the Pediatric Journal of Hematology and Oncology, was very gracious in consenting to read the diary and providing a venue for its publication. I hope each of you will find some meaning in the story that unfolds below. Nor the Years Condemn: 1955 Sonja Goldstein PREFACE In the past, I have frequently marveled at the appalling frankness and minute detail with which some writers described personal tragedies. There had seemed to me a violation of intimacy, which I found difficult to accept. During the past year, I believe I have come to comprehend what motivated such writing. As our own personal tragedy has intensified in its starkness, I have felt an ever-growing urge to set down on paper what has happened. It seems as though by reducing these experiences to pen and paper, I might achieve a cleansing of the soul, a purging of the emotions. Writing this short history of David is designed as counsel neither of hope nor of despair. Rather, it is an account of inexorable fact. PRELUDE David and his fraternal twin Joshua were born on July 4, 1953 in Washington, DC. Joshua weighed 7 lb 3 oz and David 4 lb 4 oz—consequently he had to remain in the premature nursery for 10 days after my return from the hospital with Joshua. He thrived and developed normally. When he was 1-year old, he weighed 20 lb, having more than quadrupled his birth weight. Looking back, this first year now seems uneventful; though it was hectic enough while it lasted. No sickness and only 1 really terrifying experience. This experience was rather curious in the light of subsequent events. When David was about 4 months old, Joe, his father, while playing with him, suddenly felt a small lump on his back. We immediately called the pediatrician. Dr Lewis maintained that the lump had no particular significance. Noting what, I suppose, must have been a woeful expression my face, he remarked, “It's not cancer, if that's what you're worried about.” “As a matter of fact I was thinking of that,” I replied, “but, on second thought, I don't suppose cancer occurs in children this young.” “Even small babies can have cancer,” said Dr Lewis, “but I'm convinced that David's lump is nothing of the kind. However, if you are at all concerned, I'll send you to see a children' surgeon.” So, being foolish parents I suppose, we marched off to see Dr Allen the following day. He assured us that the lump was merely a harmless fatty tumor, not requiring any medical attention, and the incident would have been forgotten, except for the fact that Dr Allen operated on David for a kidney cancer 9 months later. This coincidence seemed to set the tone for the nightmarish quality of David's whole sickness. But, to reiterate, our first year with the twins cast no shadows before it. Joshie had a hard time teething, and I used to get upset because I felt that both boys were fussier than other babies of their age. Having abjured the horrors of comparing children's development, I, with my equally insistent friends, vigorously embarked on a course of comparing our progenies' advances. Remarking “what does it matter when babies start walking, they all walk sooner or later,” we jealously eyed each baby's first steps, mentally counting the months that separated it from our own offspring. We walked a lot. Friends and neighbors often complimented me on having the boys out in all weathers. Honesty unfortunately compelled me to admit that it was much easier to keep them happy walking than in any other way, and that I had become a fresh-air fiend in sheer self-defense. Strangers seemed fascinated by our twin carriage, and I toyed with the idea of making a collection of their remarks. Thus, when passed by a group of children, the invariable cry was “Look! She's got two babies!” As if I did not know! Kindly ladies would peer into the carriage at sturdy, brown-haired, brown-eyed Joshie and slightly built, blue-eyed, blond David and exclaim, “Aren't they identical!” To which I would reply, “Not that I've ever noticed.” Young mothers would sigh, “However do you manage?” To which I would answer untruthfully, “Oh, there's really nothing to it.” In May 1954, when the boys were 10 months old, Joe had to go to California for several weeks, in connection with possible employment at Stanford University Law School. The boys and I spent this time with his parents in Springfield, Massachusetts. Inevitably, David came down with his first cold the day before we were to leave, and Joshie similarly obliged 2 days after our arrival. As a result, the visit was somewhat noisy and hectic for all of us, even though the folks claimed (probably quite truthfully) that they enjoyed every minute of our stay. Robert Wolfson, a pediatrician and distant relative, came to the house and gave the boys a thorough examination, finding nothing worse than a common cold. Shortly after Joe's return he received an appointment to teach at Stanford Law School and we began preparations for our move West. THE BEGINNING It is Monday, July 12, 1954. On the following Thursday, we are to leave Washington for a 2-week vacation in New Hampshire before flying to California. Joe's parents have prepared everything for our arrival in their Spofford, New Hampshire, house, including a supply of baby food, 2 cribs, and diaper service. We have decided to take the boys for a final checkup with Dr Lewis, even though their next monthly checkup is still 2 weeks away, as we have to collect various papers from his office anyway. Our main concern, riding to his office, is lest we forget to pick up the “certificates,” which we have asked him to complete for our baby record books. We arrive in high spirits at 10-o'clock in the morning. The boys are weighed. Weight gain is normal, though, in David's case, somewhat lower than what I had expected in view of his constantly voracious appetite. Then, while Dr Lewis is examining Joshie, his associate, tall, lanky Dr Connor examines David. Joe is with Joshie. I am with David. I shall never forget the scene. Looking absently out of the window, as if to concentrate all effort on his probing hands, Dr Connor, as usual, presses David's abdomen. But, not as usual, he continues to press and to gaze out of the window. He remarks, “So you are planning to leave this week, are you?” Lightheartedly, I reply, “Yes, if you check us out OK.” Then our world of normal joys and sorrows receives its first blow, “There is a mass in David's abdomen which I should like to see disappear before you go.” He places my hand on David's abdomen, but I can feel nothing untoward. He advises us to give David an enema to see whether stool causes the mass. We drive home in a daze saying very little to each other and stopping on the way to purchase an enema syringe. We give David his first enema, and several little hard balls appear. We were greatly relieved, but then Joe, who has been able to detect the swelling, says it is unchanged. I can still feel nothing at all. Soon, Dr Connor telephones and seems very pleased that the enema has produced a result. His evident relief, coupled with his suggestion that he pay a house call that afternoon, does nothing to alleviate our unspoken but not nameless fears. He examines David and says, “I should like him to be admitted to a hospital today.” Now we ply him with questions and he tells us that the mass may be a tumor on the kidney. Yes, it may be a malignant tumor, but extensive tests are needed to determine whether this is so. Still in a daze, we drive to Children's Hospital. David has never seemed happier as he gaily observes traffic from his back seat. I say to Joe, not really believing my own statement, “If this involves his kidney, and he has to have it removed, I don't suppose we'll have David with us for long. I don't believe one can live with only one kidney.” Such was the extent of my haplessly short-lived ignorance of how much the human body can endure and yet sustain life. On arrival at the hospital, David is given some chemical and then x-rays of his kidney are taken at short intervals. The procedure lasts well over an hour during most of which time David cries in fear and outrage. Because of radioactivity, Joe and I are not allowed in the room, except in between pictures. Finally David is taken to his room. It is a pleasant room—there is a bed for me, as the hospital allows rooming-in, which means that I may remain with David 24 hours a day. Fortunately, my mother is visiting from Canada and will be able to look after Joshie. This has been the first time since their return from the hospital after their birth that the boys have been separated even to the extent of a short car ride. Nor have Joe and I ever been simultaneously away from them during their waking hours. Two or 3 more doctors examine David that afternoon. Among them is Dr Allen, the surgeon. He seems quite animated about something, and I gather he is expounding a theory to the others. Later he tells us that David's swelling may be an enlarged spleen—which would put his complaint in a completely different, and curable, category from a kidney tumor. We ask, “Even if it is a kidney tumor, must it necessarily be malignant?” The answer is, “In child of David's age, almost invariably yes.” David seems restless in his crib, though no longer frightened. Suddenly, we realize that we left at home a blue blanket to which he has been developing a vague attachment. Joe drives home to get it, and David is soothed and goes to sleep easily. This is the last time that we could conceivably have forgotten the blanket. His attachment to it grows stronger the sicker he becomes, until he clings to it day and night. That night, I sleep better than I should have thought possible—it makes me wonder at how callous I can get. But one word pounds in my dormant brain and dominates my dreams, “Spleen—spleen—spleen—spleen.” David does not seem too upset by the hospital routine. Joe comes early next morning and David acts much as usual. Around 2-o'clock, while David is asleep, Dr Connor calls us into the hall, “Well, it's the kidney.” For the first and the last time, I scream out loud in protest, “No! My David! No!” After that initial outburst, acceptance supersedes protest sporadically, though never completely. Dr Connor tells us that David's kidney should be removed immediately. In reply to our question, he assures us that it is perfectly possible to live a normal life with but 1 kidney, “That's why God gave us two.” David is given a shot to make him sleepy. But, as if knowingly, he remains wide awake for over an hour, while Joe carries him up and down, up and down the long corridor outside his room. He does not cry, but he refuses to go into his crib, and he refuses to leave his father's arms to come to me. So Joe walks with him, up and down, up and down, whereas I walk behind them. Finally, we are called to a little playroom outside the operating theater. It is overflowing with lovely toys, which we gaily—we hope—point out to the ever-wakeful David. Then he is taken from us into the operating theater. Dr Lewis tells us that before the operation can begin, it is necessary to open a vein in case a blood transfusion should become necessary, and also to allow for postoperative intravenous feeding, and that this procedure may take some time. It does. Perhaps 20 minutes elapse before the actual operation begins. Dr Lewis informs us that it is expected to last about 2 hours. From the playroom we can see the door to the operating theater. Peering through its glass is an elderly little man with a shock of white hair. He is Dr Humphrey, the radiologist. Dr Humphrey is to become our good friend. This is our first glimpse of him. We leave the playroom after a while and go the hospital cafeteria. At the door, we engage in a senseless wrangle with the cashier, who, it seems, needs to know exactly what we intend to consume before allowing us to enter, so that she can be paid in advance. We settle for iced tea. Like 2 puppets, we collect our tea, find a table, sit down, and sip systematically. All the while I think—here I am drinking tea and wondering whether I should eat a cheese sandwich too, but I cannot anyway because of what we told the cashier when David is being operated on for cancer , and maybe it would be better if he were to die during surgery. We rise and take a walk around the block. As we leave the air-conditioned hospital, the heat strikes us with the impact of a physical blow. I realize that this is Washington DC in July, and that for the past 24 hours we have left this reality and begun to live in a different world. We return to the playroom and wait. And I find myself blurting out my guilty undercurrent of thought, “If this turns out to be cancer, I almost wish David would die now. How, from a purely selfish point of view, can we go on living with the constant threat of cancer recurrence and what it means?” With inexorable logic, Joe replies, “We must!” I am to discover that this “must” is the only immovable, irresistible reality, and indeed, a source of comfort in the months to come. But a whole year elapses, David is hemorrhaging in Children's Hospital in Boston, Massachusetts, and for the first time, I truly believe death to be imminent, before I recognize with finality that I want David to live as long as possible and that I do not wish his life to be shortened by a split second, however sick he is and however inevitable and dreadful the end may be. Though I have just been to the toilet, when Dr Lewis enters the playroom, I sit down to suppress the nervous urge to urinate. He tells us that, of course, pathologists must confirm the surgeon's opinion, but there is in effect no doubt that the tumor was malignant as expected. For the first time, David's probable death sentence is given an appellation—and a human one at that. He has a “Wilms” tumor, named after the man who discovered it. It is a malignancy peculiar to children, and originating always in the kidney. The operation was “successful” as far as could be seen. The tumor came out clean and unruptured; no complications had set in. The chances were about 1 in 3 that the tumor would not recur. If it does recur, this spread would be repeated and fatal. The first 3 years were the crucial ones. This last piece of information is my only grain of comfort. With typical human hope, I think that perhaps 3 years from today we shall feel relieved. One of my father's favoriteaphorisms passes through my mind, “Better an end with terror than terror without end.” (This, as I have pointed out, is something about which I have since changed my mind, at least as of this moment of writing when David, looking like a living skeleton, looking like the postwar photographs of Hitler's concentration camp survivors, clings stubbornly to the last shreds of his little life.) I dread our first sight of David, but he looks surprisingly well. His color is far from ashen, as I had visualized it, and he seems peacefully asleep. He has a needle in his foot, leading into a tube suspended from a pole above his bed. Through this, he is receiving IV nourishment. The purpose of this, the doctors explain, is to avoid loss of strength during the days immediately after surgery and is a routine procedure. Left alone with David and a nurse, I weep unrestrainedly. For the first time since our visit to Dr Lewis' office on Monday, it seems there is nothing to do and no one to conceal my feelings from—no results of tests or operation to await—nothing, but to let full realization sweep over me. The pretty student nurse tries to comfort me, “He's doing fine—he'll come out of it OK.” This type of consolation then and subsequently makes me feel even worse, by reminding me that this is no ordinary one-blow illness where the patient gets sick and then recovers—that the chief terror is yet to come. We slip easily into hospital routine. I take care of most of David's needs, which are few, myself. He eats little but is fairly comfortable. The IV is a nuisance to watch, as it is always stopping, going too fast or too slow. I learn to gauge the timing and to call the nurses, whose expert manipulation of tubes and clamps adjusts the flow of the liquid. All the nurses are kind and gentle, particularly the student nurses. In our future hospital experience, I am to confirm my initial impression that the student nurses are almost invariably more sympathetic than the graduate nurses, who have, understandably, become somewhat immune to human suffering. My favorite on the floor is a nurse's aide, who is on duty in the evenings. She is an immense, motherly woman, who has numerous children of her own. She sings David to sleep at night and promises to watch him while Joe and I go out to eat. Breakfast and lunch I eat in the hospital coffee shop, which is run by volunteer workers. There are good milkshakes and Danish pastries. I am quite preoccupied with food these days. I look forward to all meals, and calculate how many calories I have consumed. In the evenings, Joe and I go to restaurants to eat—this is my only time away from the hospital. My preoccupation is not only with food. I have recently had an infection as a result of which one nail grows crookedly. Previous to David's illness, I used to wonder whether it would grow out before we arrive in California, and whether I should change my hair style, so as to look my best when meeting our new friends, neighbors, and colleagues. Much to my amazement, I continue to wonder about these things. I stare at my finger and into the mirror each morning and night. I have not yet learned, as I shall learn gradually, that, at least in my case, mundane and self-centered thoughts do not depart in the face of great tragedy. And I am also to find that, regardless of best intentions, trifling annoyances continue to be felt despite, and in addition to, all overwhelming nagging worries. In short, personality changes do not necessarily accompany even the most drastic changes in circumstances. David begins to receive x-ray therapy to the abdomen and lower part of the chest the day after surgery. This, it is explained to us, is designed to kill any microscopic tumor cells remaining in the body. I break down once more when David is first placed under the cumbersome x-ray machine. How can we go on living with this thing? After adjusting the machine over our wailing David, Dr Humphrey leaves his assistant to supervise the 10-minute treatment and draws us outside for the first of many talks, “for the children's sake, for Joshua's and David's sake, you can't go on like this,” he admonishes me. Through my tears, I nod impatiently. I am perfectly well aware of this, but once in a while one just has to give in to self-pity. We ply Dr Humphrey with many questions. The upshot of his information is: nobody knows the cause of David's tumor. It is quite possibly congenital. No, there is no more reason for Joshie to be similarly afflicted than for any other child. Were he an identical twin, a different story. (At this point we heave a sigh of relief. We have always been rather smugly pleased not to have 2 children looking exactly alike, have dressed them differently, and bought them different toys, but never in our wildest nightmares for a reason like this!) How to treat David? Like any normal child. “Just use your common sense and don't bounce him too hard for a while. Don't treat him like a rubber ball and throw him up in the air.” Prognosis? The chances are about 1 in 3 that the tumor will not recur. If it does, it will probably appear in the lung. Our worst fear is of the possible pain and suffering that lies in store for our David. The news that the lung may be affected upsets me enormously. I clutch my chest theatrically and weep again. Dr Humphrey assures us that with modern medicine, David will not be allowed to suffer. I am forever pressing Dr Humphrey about the statistics. One chance in 3? Is there any break-even point after which the chances are better? Finally, Dr Humphrey says something which forever silences me on this point and which is the most valuable help I have received to date, “What do you want to know all these statistics for? As far as you and David are concerned the chances are 100% or nothing.” THE OUTSIDE WORLD David makes a rapid recovery and is allowed to return home after 2 weeks, though he must return to the hospital daily until he has completed his x-ray treatment. One of the hardest tasks I—and I believe Joe also—have ever faced, is to resume “normal” living. In the hospital, we lived in a private world. We existed in a kind of suspended animation, concerned with David's day-to-day progress and, above all, not faced with other people. Now, we must decide what to tell these other people. Hitherto, in response to solicitous inquiries from friends, we have told them, “David had a defective kidney and it was found best to remove it since human beings can function equally well with but one kidney.” “How did we discover it?” “Well, the doctor found a swelling—there were no other symptoms because the organ was removed before it had a chance to harm David's system.” We now determine that this is all we shall divulge of David's condition. We fear that if we tell the truth, he will never be treated quite the same and we shall have taken away his slim chance of leading a normal life. From David's point of view, I am still convinced that we did the right thing. (The only people who know the truth from the beginning are Joe's parents and my widowed mother.) But I am equally certain that we could have lightened our own burden by sharing our knowledge. My waking-hour nightmares of what we should all have to endure in the event of recurrence were mingled with daydreams of the sheer relief it would afford me to tell my friends, “David has cancer and will never be well again. We have known this since his operation.” I am of course besieged with neighborly solicitous questions when I take the boys out walking at home. Some are satisfied with asking what was wrong, and is David doing OK now? Others are more persistent and sometimes probing and tactless, “He's lost weight, hasn't he?” (Actually we find that David has lost only a pound or 2 and is to lose only a little more before he regains his former weight.) “You can tell he's been sick, can't you?” “I suppose you'll always have to be extra careful with him having only one kidney, won't you? I know someone who had a kidney removed and they always had to be careful about what he ate.” But however innocuous and kindly meant the inquiries are, they make me feel unbearably heavy-hearted and I must force myself to go outside at all. Worst of all are the strangers' comments in which I have hitherto taken half-scornful pride. “Isn't it something to have twins!” The mere sight of our twin stroller makes me want to burst into tears—but I don't. One consolation is our projected move to California as soon as David's x-ray treatments are concluded. Away from people who have known us in more carefree days, perhaps I shall be less unhappy. At any rate, it will be easier to deceive them. We have been warned that David may have some stomach upset as a result of the X-Ray therapy. Actually he does not seem to feel too bad. But his appetite remains poor and he persistently runs a slight temperature, for the cause of which the pediatrician refers us to the radiologist, who refers us back to the pediatrician. David is given an antibiotic, which results in brief but sheer panic. I see what looks to me like blood in his bowel movement, rush to telephone Dr Connor, and recall, even before his quick reassurance, that the antibiotic was tinted blood-red! During the 2 weeks before our departure for California, we have an active social life of which the greatest ordeal is a farewell party given by the Rowes at which most of our friends appear. I should probably have felt hurt had no one thought to give us such a party, but it is painful none-the-less. Joe is assuming a fine position at Stanford and consequently, we receive many justified felicitations. Our response must, of course, reflect our supposed gratification and happiness, which has been genuine once and will never be again. Before we leave, we pay 1 last visit to Dr Lewis' office, at which nothing new occurs, except that I realize that I shall never, in my whole life, be able to watch with any equanimity while a doctor places his hand upon a patient's abdomen and starts to press… Dr Connor has been wonderful to us. He has never tried to underplay the situation—yet he has soothed us. He is, I think, profoundly pious—has told us more than once that things are in the Lord's hands now. While at the hospital, we tell him how nice Dr Allen has been to mention on his Sunday visit that he has just prayed for us. To which Dr Connor's reply is, “Well of course—we all do.” On August 15th, we fly to California, a mere 2 weeks after our scheduled arrival, though it seems a lifetime. The trip is highly unpleasant, but in a pleasantly normal fashion. David is very comfortable and sleeps a lot. Joshie cries almost incessantly for the first few hours and sleeps not at all. When he grows up, we mean to tell him that because of him we accomplished the feat of walking most of the way from Washington, DC to San Francisco, California! CALIFORNIA—PROGNOSIS QUESTIONABLE After a week or so of motel life, we move into our rented house. In the interval, I become accustomed to explaining to strangers, “Yes David and Joshua are twins, even though David is smaller; he does not weigh as much less than Joshie as he looks—yes, he is pale because he has been ill recently, but he is doing fine now.” David is, in fact, not altogether well. I notice that he has some discomfort after each meal and has to be carried and comforted for about half an hour at these times. The day after our arrival, we arrange to see Dr Walker at the Palo Alto Clinic. We choose him on the recommendation of Joe's colleague Phil Neal and his wife Laurie—they have 3 children of their own. We tell Dr Walker David's whole history. His stomach discomfort, we are reassured is because of his x-ray therapy and will disappear eventually. He now weighs around 18 lb. We arrange to bring him to the clinic for monthly checkups. In addition, he is to have x-rays taken of his chest and abdomen to watch for recurrence of the tumor. We are gradually ceasing to talk and even think in terms of “cancer” (except when we wish to be startling). Doctors do not use the term, which is almost meaningless to them. There are benign tumors and there are malignant tumors. The course of illness varies so much among different malignancies that some may bear more resemblance to certain benign tumors than to fellow malignancies. A Wilms tumor is about as malignant as they come. As far as we can gather, this means 2 things: 1, that recurrence is highly likely and 2, that, given recurrence, the outcome is almost invariably death. Palo Alto has a tumor board at which all cases are registered. Dr Walker asks permission to discuss David's case at its next meeting. We readily agree, but request that he be uncommunicative in reply to possible nonmedical questioners (Palo Alto is a small community, Stanford University an even smaller one. Nearly all the Stanford Law School faculty and students use the Clinic, as there is a special arrangement of prepaid care. Above all, Dr Walker is a great favorite among the young parents who are to become our friends). In parting, Dr Walker says, “Well, as you know, the prognosis is questionable.” For some reason, this simple statement, by no means news to us, reduces me to tears, somewhat to Dr Walker' consternation. We assure him that my outburst is not because of tactlessness on his part, and that we most certainly always want to be specifically informed and wish no words to be minced and nothing to be kept secret from us. I might say at this point that throughout David's illness it has been a great comfort to us to know that we should always be told the worst and the best. All the doctors with whom we had contact were wonderful about this. Our questions were never evaded, but answered as fully as we desired. This saved us unnecessary worry and, in addition, removed some of the nameless dread with which I, at least, had always viewed “cancer.” With greater familiarity came not contempt, but at least acceptance of something tangible about which we were doing everything humanly and medically possible. Senseless dread was replaced by well-founded fear. We all settle down gradually, getting used to our new environment. We rave about the climate. Having come straight from a Washington DC August furnace to cool, cloudy mornings, warm, sunny afternoons,
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