Talking with Doctors

David Newman

• Publisher: Routledge
• Year: 2013
• ISBN:
  9781134915538
• Edition: 1
• Topic: Medicine
• Subtopic: Public Health, Administration & Care

Without any warning, in September 1999, David Newman was told he had a rare and life-threatening tumor in the base of his skull.In the compressed space of five weeks, he consulted with leading physicians and surgeons at four major medical centers.The doctors offered drastically differing opinions; several pronounced the tumor inoperable and voiced skepticism about the effectiveness of any nonsurgical treatment.

Talking with Doctors is the story of Newman's efforts, at a time of great stress and even impending death, to wend his way through the dense thicket of medical consultations in search of a physician and a treatment that offered the possibility of survival. It is the story, especially, of the harrowing process of assessing conflicting "expert" opinions and, in so doing, of making sense of the priorities, personalities, and vulnerabilities of different doctors. All too often, he found, the leading specialists to whom he was sent were strangers in the consulting room-and strangers who became stranger still, both cognitively and emotionally, when ambiguous findings pushed them to the outer limits of their training and experience.Newman writes poignantly of his sense of powerlessness and desperation, of the painstaking means by which he ascertained what could be known about his tumor, and of the fortuitous events that finally led him to life-saving help. Talking with Doctors is a compelling, absorbing, unsettling story that touches a collective raw nerve about the experience of doctors and medical care when life-threatening illness leads us to subspecialists at major medical centers. Probing the nature of medical authority and the grounds of a trusting doctor-patient relationship, Newman illuminates with grace and power what it now means for a patient to participate in life-and-death medical decisions.

Forewarned, Four-Armed

At many points in the weeks following my departure from Dr. Gibson's office, it seemed that an invisible, unknowable, mammoth lurked in every room, on every street. The sensation was that an insurmountable barrier, blinding and confining, existed between everybody else and me. I felt as though I were partially entombed. Something appeared inherently wrong in my perceptions and experience. When with others, I often sensed I was marked for death. Whatever the overt empathy, there was an unintended distance; their lives were expected to continue.

Naturally Suzie and I sought, over the next several weeks, to be as protective as possible of our three children (Jacob, nine, and Judah and Isaiah, both three and a half). This meant not speaking of my illness in their presence, particularly while there was tremendous uncertainty and the viability of any treatment was unclear. Doing so was difficult, as I was frequently on the phone and people visited our home.

By contrast, outside the home and the presence of our children, Suzie and I spoke with anyone we thought could be of help. Our conversations ranged from those with close friends to those with distant acquaintances or people we didn't know but were put in touch with. The worst-case scenario almost led me to abandon my customary social restraint.

Of the people who helped me through the anxiety and fear, it was Suzie who was with me the most. It was she who bore the brunt of my trembling, she who I leaned on. Suzie had her own worries and fearful imaginings, but they did not interfere with her being consistently present and caring. She kept our home stable and loving, and she accompanied me to every subsequent consultation that fall. The people at her school understood the nature of this crisis and knew that Suzie would do everything she could to make sure things ran smoothly at work, even in her absence. The staff and teachers worked together to make this happen. At a staff meeting Suzie told her assembled teachers, in response to their offers of help, “The most important thing you can do for me is to keep everything here running well.” She kept close track of what was going on, but others assumed some of her responsibilities, and she was given the opportunity to be with me.

Suzie and I, in our 11 years together, had plenty of experience with medical emergencies. Having met when we were both 32 (she, a dancer, part-time teacher, and waitress; I, a painter and part-time teacher), we were eager to have a family and married less than 10 months after our first blind date and the handful of conversations that quickly established our mutual excitement in finding someone with whom we could be close. Exactly two years following that initial meeting, we brought our first child home from the hospital. In the next nine years, we had two late miscarriages, two complicated deliveries, and one very sick child. These experiences lay in the background and no doubt informed our responses to my medical emergency.

Jacob, our first child, had been delivered by emergency C-section because the umbilical cord was wrapped around his neck, and when Suzie pushed, his heart beat dropped precipitously. Suzie's next pregnancy ended in miscarriage in the fifth month. We were hurt by the coldness and impersonal manner of the covering physician (our own doctor was away on vacation), and our hearts were torn by the loss and disappointment. Our obstetrician told us that there was no way of knowing what had caused the miscarriage, although it had occurred 10 days after an amniocentesis. This obstetrician, well known for handling high-risk cases, assured us, “Don't worry. Lightning doesn't strike twice in the same place.”

But it did: Suzie's next pregnancy ended in miscarriage in the fifth month. Our doctor, again away, was informed by the covering physician but failed to call and speak with us for several days. When we met with her weeks later, she asserted, whether out of legal or professional wisdom, that she would do nothing differently the next pregnancy. Her manner, which had previously been so warm and friendly, now appeared dissembling; she seemed to be acting as though nothing had happened. I recall being in her office, cluttered with pictures of her family, her usual jovial style marginally inhibited. I remember feeling she never again spoke openly with us, and we were disappointed, distrustful, and retrospectively angry. These feelings led us to consult with two other physicians, who recommended additional tests and who thought certain precautions were advisable (e.g., a stitch in the cervix).

Suzie's next pregnancy was a result of in vitro fertilization, which we chose because of our age (time had elapsed) and our difficulties conceiving. The birth of our twins followed seven months of bed rest, preterm labor, medication to control labor and prevent infection, constant monitoring, and several hospitalizations. Suzie went into labor in her 37th week, on the day that the medication was stopped, but her uterus ruptured. The babies’ heartbeats could not be found, and they were delivered by emergency C-section. The situation was urgent and rushed, Suzie's belly being splashed with Betadine, which got into her eyes before she was knocked out. I was compelled to leave the operating room and stood alone down the hall in an adjacent unused space. Shaking like a leaf, I heard one doctor shout, “This one's not breathing!” When the obstetrician, Dr. Thomas, finally emerged about 30 minutes later to tell me both children were fine, I hugged her. (She later commented to Suzie, with some apparent wonder, “Your husband is very emotional!”) Isaiah, the baby who was not breathing at first, was in the neonatal intensive care unit for three days. We observed and benefited from the remarkable attentiveness of the hospital staff. Isaiah quickly recovered and the members of our family were healthy for the next year.

However, when Judah, Isaiah's twin, was a year and a half he became precipitously and dramatically ill. Over a weekend, other members of the family had had a bad flu with a high fever. Judah seemed to have it as well, and we consulted with the doctors by phone. On Monday morning I took him to the pediatrician's office to be examined. The doctor found nothing exceptional, and I brought Judah home. I spoke with another member of the practice later that day because Judah's body had a reddish tinge and his hands and feet were cold; again I was told the symptoms were flu and fever related. The next day I came home at lunchtime to relieve Suzie, so she could go to work. Judah appeared listless and dehydrated, and we took him to the doctor again, although the office staff told us Judah could be seen only by a nurse practitioner.

Almost immediately on our arrival, the state of crisis was evident. Judah appeared to be failing rapidly. Different members of the pediatric practice poured into the consulting room. An ambulance was called and he was rushed to the Pediatric Intensive Care Unit at Lenox Hill Hospital. Within hours Judah was close to death.

He was diagnosed with toxic shock syndrome, exceedingly rare, especially in children. He was given antibiotics and his blood, heart, and lungs were carefully monitored. After about 24 hours his condition continued to worsen, as the oxygen level and the platelets in his blood were decreasing, and fluid was beginning to accumulate in his lungs. At a critical moment the doctors decided to move him from Lenox Hill to New York University Hospital, which had a larger pediatric ICU, more staff, and state-of-the-art life-support equipment. One of the chiefs of the NYU Pediatric Intensive Care Unit, Dr. Parnes, who lived five blocks from Lenox Hill, came to help transfer our son. The transfer was delayed for a while because Judah needed additional blood products (platelets and fresh frozen plasma) that were not readily available at Lenox Hill. Prior to the move, Parnes put a new, wider line into Judah's thigh, in anticipation of the several infusions and medications that would be needed. We then left, with the very competent and attentive paramedic telling the ambulance driver to go as fast as he could but to keep it steady. At about 10:00 Wednesday night, the ambulance sped down the East River Drive the 40 or so blocks from the first hospital to the second. I was told to travel separately and to go directly to the Admissions office to take care of the insurance information and the transfer, via computer, of the accumulated medical data.

When I rushed upstairs I found Suzie outside the PICU. She had been told to wait there while Dr. Parnes got Judah settled. When I arrived we impulsively went in and Parnes met us outside the curtained alcove in which Judah lay. He asked us to leave the PICU while he tended to our child. He was grave and very clear. Suzie asked him if Judah was going to live, and he said quite simply that Judah could die in a matter of hours.

Suzie and I waited in an empty shell of a room, with a few scattered phones and computers and chairs. We each, in our own crazed and anguished way, prayed. After about 20 minutes Parnes came out again to tell us that things were still not going well, that he was holding off intubating Judah for fear that it might lead to internal bleeding which could not be stopped. I called our pediatric practice and pleaded that one of our own doctors come immediately. Two were already on their way and arrived very shortly.

Forty minutes later we were told that Judah had been successfully intubated and we could see him. His small body lay motionless, hooked up to IV lines and machines. He was bloated from all the fluids that had spilled out of burst vessels into the body cavities. A medication was administered which kept him entirely paralyzed (to stop him from breathing against the respirator), and a heavy narcotic kept him totally sedated. He was given the most powerful antibiotics available and was receiving blood products. Doctors were pushing fluids through his system in an effort to flush out the toxin; he was also getting medication to sustain his blood pressure and his heart rate. All this was constantly monitored and adjusted.

Things were touch and go for several days, but Judah remained basically stable and further crises were averted. (The cause of one crisis—a resident changing a medication level—was identified by Suzie.) The medical team was keeping Judah alive while his body struggled to cope with the damage the toxin had caused. Lab results later revealed that the bacteria producing the toxin was a common staph bacteria found in all our bodies. For reasons unknown, Judah's immune system overresponded to the toxin by many factors of 10.

At one point, Suzie's brother Joe, a cardiologist on the West Coast, encouraged us to have Judah transferred to yet another hospital in the city. Based on information he had received, he told us that he thought the other hospital had a better PICU, and it had the only life-support machine in New York State which, if needed, could entirely reroute a patient's blood supply outside his body. My father, following a conversation with Joe, also wondered why we didn't have Judah transferred. He questioned why we weren't consulting with other doctors. At the time, however, Suzie and I were confident that Judah was receiving the best possible medical care, and we thought that he might very well not survive another transfer. Nonetheless we discussed this option with Dr. Parnes, who assured us he had experience with such transfers although he didn't deem one necessary at that point.

Judah was on the respirator for eight days, but his body rallied to emerge unharmed. When they took him off the narcotic, he experienced withdrawal for about 36 hours, during which he was intensely agitated, delirious, impossible to comfort, and unable to sleep. It wasn't until we took him home several days later that he was willing to walk and to smile. He remained tentative for a short while and was more inclined than previously to focus obsessively on holding small, cherished objects.

Several of Judah's PICU nurses and the ambulance paramedic later told us how terrified they had been that first night, how completely and effectively Dr. Parnes had taken control, how direct and clear he was in giving orders, carefully repeating them if needed. It was plain to us that he (and they) had saved Judah's life.

During the two weeks he was in the hospital, Suzie and I were both there during the day but alternated nights. When things were relatively calm, we slept in a room set aside down the corridor from the PICU, with other exhausted parents—all of whom would leave their sleeping children only with the nurses’ assurance that they would be called if the child awoke or there was any change in the child's status. We were deeply impressed by the PICU staff, who regularly encounter children on the verge of death. We knew we had been very fortunate, more fortunate than most of the other families who shared the PICU with us, many of whose children had chronic and incurable diseases.

A far less dramatic and threatening encounter with doctors, but one that nevertheless had its impact on us, occurred when I tore the anterior cruciate ligament in my knee playing touch football. The first doctor I saw, with an office in a very wealthy neighborhood and highly recommended by a physician-friend, suggested immediate surgery that would require a three-day hospitalization. Because he presented the situation as necessitating quick action, we were prepared to proceed with him until another friend, who had some knowledge of this particular doctor, advised us to get another opinion. So we got two. Doctors #2 and #3 counseled strongly against immediate surgery, given the swelling from the injury itself, and suggested physical therapy for several weeks prior to a proposed operation, to strengthen the muscles in the leg and facilitate postoperative recovery. They recommended an outpatient procedure, requiring no hospital stay. Doctor #1, prestigious and with a monumentally busy practice, appeared to be far less able than his colleagues.

Such were some of the experiences that lay behind us when Suzie and I encountered the discovery of my tumor one and a half years after Judah's illness. The abruptness, the shock, the overpowering disruption, being pulled out of expectations, safety, and security were familiar feelings, if necessarily muted in retrospect. With Judah's illness and with the miscarriages, I could readily recall traveling through the city from home to hospital as to a battlefront, cut off from my surroundings. We knew that chance, fortune and misfortune, could play a very significant role. One infectious disease physician had memorably remarked that the likelihood of a child's coming down with toxic shock syndrome was like that of a particular person being hit by a particular pigeon's shit as he walked the streets of Manhattan. Suzie and I knew that our attentiveness and vigilance were required and useful. We knew that accepting one expert's opinion might be hazardous. We were aware that there was tremendous variation among doctors in skill, wisdom, and reliability, and we were attuned to the very significant difference an individual doctor could make. We recognized that there could be substantial areas of the undetermined and unknown. While we didn't overtly reflect on any of this at the time, it played a part in how we approached the discovery of my tumor.

We relied heavily on our firsthand experience, we relied heavily on others, and I relied deeply on Suzie. At all the consultations to come Suzie asked significant questions and usually attempted to establish a more personal rapport with the doctors than I did. After each conversation with a physician, we reviewed our perceptions and understandings, and Suzie frequently remembered things that had been said that made a difference, things I had forgotten or dismissed. Her eyes and ears seemed to enhance my presence and identity (ever so slightly) and mitigate the impersonality of the proceedings and context. By her presence and through her questions and interjections, she brought into the doctor's immediate awareness the existence of our family. Often she provided the ballast necessary for me to hold a stable position, even one as simple as insisting that a doctor's presentation meet the minimum requirements of logic and common sense. Her presence steadied me in and out of the consultations, and at times when I couldn't bear being alone.

Chatter in the Infield

Two hours after I had been told of the tumor I entered my psychoanalyst's office for the first appointment following a five-week August vacation. The work I was doing in therapy was an elective extension of my training analysis. It was a peculiar, intense, human relationship—natural as anything we do and conceive, and constructed, bounded, contained (and thereby also similar to anything else we do and conceive). In my own experience of therapy, as well as in my work with patients, I wandered along a spectrum of possible locales—at times engaged with a powerful and direct questioner, a sharp-edged other, at times floating in the vicinity of someone much more diffuse. I sometimes imagined I was far more meandering, wayward, undisciplined, and lost than my principal interlocutor. At other times I knew better. There were many moments when, looking for certain kinds of interaction, for signs of struggle and conflict, for example, I failed to recognize the extensive intimacy of the interaction that was taking place. Craving contact, tolerating and seeking distance and difference, I walked along a water's edge. I would wade in and swim (reluctantly, eagerly), but in that autumn I was swept out by an undertow. Saul's office periodically provided me with something of a shore I returned to. It also served as a place where I reported my nightmares of drowning. And then, as well, it was a context in which we worked painstakingly and collaboratively toward constructing a raft that might help me to survive.

Sometimes Saul's office felt like a war room where maps were laid out and battlefronts plotted, a place where reconnaissance missions were conceived and their results reviewed, where strategy was outlined and scrutinized. It seemed as though I were repeatedly urged into an all-out battle, thoughtfully considered, for and by my self.

I began the September 9th meeting by saying to Saul, “Two hours ago I got some very bad news.” We engaged in a very practical discussion. We gave detailed consideration to what I knew and understood, and what I didn't know and understand. Saul carefully questioned my thoughts and options and the alternatives that might exist. Our conversation, as at other times, promoted a more complete use of my experience and resourcefulness. At the end of the session Saul said, “Let your family warm you this weekend.” A compassionate remark that, I sensed, came from personal experience. But not something I conceived as possible.

In those two hours between seeing Dr. Gibson and seeing Saul, I had called my parents and sister and my friend Eric. That evening I spoke with several other friends who are doctors (although their specialties were not oncology but gerontology and gynecology) and with my wife's brother (a cardiologist). An acquaintance, George, someone I had met socially once (his wife worked with mine), called to offer his help and experience; he was a psychiatrist who had worked as a liaison on a cancer unit for many years. Over the next few months I spoke with many of these friends and family very often, some almost daily. With this improvised community of listeners and observers, I reviewed every consultation I had, multiple times and in detail. Each review helped me to formulate questions, to gauge the risks and benefits of any proposed course of action, to understand information, to recognize the limits of what was known, and to pursue multiple options. Each person eased my being alone with life-and-death considerations and provided me with support, encouragement, and companionship.

Collectively, these...

Table of contents

• Front Cover
• Title Page
• Copyright
• Dedication
• Contents
• Author's Note
• Talking with Doctors
• Please Give Him Back His Copay
• The Worst-Case Scenario
• Forewarned, Four-Armed
• Chatter in the Infield
• No Dye
• Eve's Offering
• Three Words He's Not Afraid to Say
• Whose Pathology Is It?
• An Orderly Inquiry
• The Putting Out of Eyes
• Traffic
• No Dye, Again
• Unwritten Letters
• Parallel Parking
• Something Is Wrong with You
• Is That Your Tumor Talking?
• Higher Court Ruling
• Two Very Different Kinds of People
• Nothing Palliative
• A Shadow of Opportunity
• Contradiction
• Stuffed Animal
• New York, New York
• Hopes and Prayers
• He Can Do Things No One Else Can
• Perseverance and Serendipity
• On a First-Name Basis
• Help! I Need Somebody
• Not Just Anybody
• He Will Operate on Anyone Who Lets Him
• What You Don't Want
• What I Deserve
• Now These Days Are Gone, I'm Not So Self-Assured
• These Little Town Blues
• Saying Good-Bye
• Street Fight
• These Vagabond Shoes
• Start Spreading the News
• Return of the Stuffed Animal
• In Human Hands
• Life Without Parole
• False Bottom
• Coming and Going Before the Graveyard
• Life-and-Death Dialogues
• Notes
• Acknowledgments