Melanie was 43 years old and determined. A 104-degree temperature did not keep her from going to her editing job at Blue Cross, but the mass on her left upper arm kept getting bigger and more painful, persuading her to go see Dr. Munjack, her primary care physician. He diagnosed an abscess and started her on oral antibiotics. After a brief initial improvement, her symptoms worsened again, so Dr. Munjack admitted her to Northridge Medical Center for more aggressive treatment with intravenous antibiotics.
To my mind, this wasn’t a big deal. For over 20 years, Melanie had battled bipolar affective (manic depressive) disorder, obesity, and acne, so an abscess in her arm seemed an annoyance and little else.
It got a little more complicated when we got the results of her routine hospital-admission blood tests; her white blood cell count was 800. The low end of normal is 4000. There are several white blood cell (or leukocyte) types normally present in blood, and most white cells are either granulocytes (more commonly called neutrophils), the cells that give pus its green color, or lymphocytes, the cells that HIV destroys. Melanie had almost no neutrophils, a condition called agranulocytosis, and that’s why her body was losing the battle with the bacteria in her upper left arm. Something had switched off her bone marrow’s granulocyte-production process. Leukemia can cause this, but more often nonlymphocytic leukemia presents with a normal or elevated white blood cell count. Agranulocytosis is an unusual but well-recognized side effect of some medications, and Melanie was still using several prescription drugs to maintain mental stability.
So this was now a life-threatening situation, but with aggressive treatment of the abscess, using surgical drainage and powerful antibiotics, and discontinuation of the offending psychiatric medicine, one would expect a complete recovery. An avid reader, Melanie had a much easier time staying in the hospital than most and could use the time to catch up on the graduate-school courses she was taking at Pepperdine University to get her master’s degree in marriage and family counseling. Her mental illness had, from the time she was forced to drop out of Stanford Law School in 1981 until she began counseling clients in 1998, prevented her from working at jobs commensurate with her intelligence. For the first time in her life she was entering a career that she found rewarding.
Early in her hospital stay, her hematologist, Dr. Davidson, did a bone-marrow biopsy, an often painful procedure that requires the doctor to twist a thick needle into the patient’s pelvic bone just above the buttocks. The preliminary results confirmed the lack of granulocyte precursor cells, so he gave Melanie GMCSF (granulocyte- and macrophage-colony stimulating factor) to try to get production started again, and her cell counts did improve slightly while the antibiotics prevented the infection from spreading. Because the antibiotics kept her in stable condition, the surgeon decided to wait for her bone marrow to recover a bit before making the necessary deep cut into her arm to drain the abscess so that she would have a better chance of healing quickly afterward.
Once they made the decision not to do surgery, her doctors sent her home to get her antibiotics there, something the HMOs make us do now to save money, even though Melanie’s immune system was so compromised that there was debate among her doctors about whether she should stay in isolation and whether she could be in the same room as Nelly, her cat.
Late in the afternoon about 16 days after Melanie had entered the hospital, I got a call from Dr. David- son with the news that he had received the final results of her bone-marrow chro- mosomal studies, and she did not have drug-induced agranulocytosis. She was developing acute myelocytic leukemia (AML). Of the four leukemia classes, AML is the worst. Fate had invited Melanie to play a real-life game of Jumanji; in this version, only 10 percent of the players survive two years. Her mother would leave her home and life in south Laguna to take a ringside seat and look after Nelly.
After letting the news sink in for a few minutes, I went upstairs into my bedroom and cried, because Melanie isn’t my patient. Melanie is my sister.
For as long as I can remember, perhaps as long as I have been alive, Melanie has had an insatiable appetite for books. She was the oldest of four kids, and three of us were lucky enough to have Jack Chap- man as our sixth-grade teacher. Clad in his black leather jacket and helmet, he rode his motorcycle to school every day and used to lead our class in after- noon jogs around the playground. He used humor to maintain interest in a way I never had seen before nor encountered since. For example, when a student neglected to pay attention, Chapman would close one eye and straighten his left arm with the thumb extended upward and wavering slightly as he took aim at his target. The intended recipient of this message usually heard our chuckling and responded by stopping the offending behavior, but if not, Chap- man would lob a small chalkboard eraser in the victim’s direction.
Melanie presented Chapman with a dilemma. She would sit in her chair and read, ignoring assignments. Not wanting to send too disapproving a message but needing to get her attention, Chapman didn’t think the eraser treatment appropriate for her. Instead, when he gave a signal, the entire class would cease all other activity and stare at my sister until she put down her book.
Chapman dropped dead in front of his medicine cabinet of a heart attack at age 51, four days after I graduated from his class. As I wept at his funeral, I couldn’t help but feel that once he had finished with the Eichel children, someone had decided his work was done.
If a patient with AML has any idea what it means, he or she approaches treatment with the same enthusiasm as a sailor of a ten-foot boat approaching a level-five hurricane. Because the dysfunctional leukemia cells displace the normal immune system, infectious agents bombard the unsuspecting host, which is why many leukemics like Melanie have a severe infection at the time of diag- nosis. So what do we doctors do? We infuse poisons designed to destroy the immune system three times. It’s a bizarre notion that something good should come out of that, but these days the only chance that AML patients have of surviving the disease is to obliterate all of the defective cancer cells and replace them with cells that behave normally.
The first chemotherapeutic immune system destruction, the induction phase, consists of continuous infusions of two drugs, idarubacin and Ara- C, for seven days. The complication phase (not an official term) begins at about day six. Melanie returned to Northridge to start her chemotherapy and to drain her abscess.
Melanie’s first life-threatening complication, septic shock, cut short her chemotherapy on the sixth day. Shock, to medical professionals, does not mean the stunned, mentally helpless condition that follows a sudden scare. It’s much worse: a life-threatening emergency during which the vital organs do not receive sufficient blood flow. Irreversible damage occurs within minutes unless perfusion returns to normal. Low blood pressure and pale cool limbs as the number of red blood cells drops. All of this results in the characteristic thin, pale, and bald features of chemotherapy recipients, and in less than a month my sister had the look of a cancer patient.
The infections kept coming. Yeast invaded Melanie’s mouth and throat, creating the white coating we call thrush. A fungus sprouted in her lungs, giving her a cough and shortness of breath to go with her diarrhea and nausea. A cardiothoracic surgeon brought her to the operating room to cut open her chest and biopsy her lung to identify the fungus, a wasted effort because nothing grew in the lab. But her arm wound healed, and the news from the most important test, her bone-marrow biopsy four weeks after her chemotherapy, gave us room for hope: no cancer. Her induction was successful; if it hadn’t cleared the cancer from her marrow, she would have had to repeat the induction.
Instead, she moved on to the consolidation phase, the chemotherapy after remission. She also moved on to UCLA Medical Center, where she would receive the rest of her treatment. When Dr. Davidson informed Melanie she had leukemia, he told her to have each of her siblings tested to determine if we could be donors for her bone-marrow transplant, which would be the third and perhaps most important cancer treatment phase and which would have to be done at UCLA. A trans- plant raises the chance of five-year survival for an AML patient by 10 to 15 percent. The transplanted bone marrow precursor cells give the transplant recipient a new population of granulocytes to reconstitute the immune system. These granulocytes, because they come from a matched donor, do not recognize the recipient’s body’s cells as foreign, but they are not perfectly compatible with the recipient’s granulocytes, if any remain. The resulting “graft versus host” reaction against these remaining granulocytes turns out to be helpful in fighting leukemia.
Having three siblings gave Melanie a better than 50 percent chance that one of us would match her, so Bettina, John, and I went to our doctors to have the tests done, with the expectation that at least one of us could be a donor. We were wrong. Melanie never had any good luck, but the absurdity of our test results seemed insulting: none of the four of us matched each other.
Without a matching donor, Melanie’s only transplant option was to have an autologous transplant, for which the doctors would “harvest” her own stem cells, eradicate her bone marrow with radiation and chemotherapy, and then give the stem cells back to her. It’s not clear that this is better than a third course of chemotherapy, but the oncologists at Northridge and UCLA convinced Melanie that it was likely to give her a better chance of survival, so she decided to go ahead with it.
Melanie had a memorable previous medical encounter with UCLA. In the fall of 1980, at age 24, Melanie was having the worst manic episodes of her life. On an impulse, she drove from Los Angeles to Boston to visit Bettina, a trip that ended with Boston psychiatrists recommending that she get on a plane and check her- self into UCLA as soon as possible. She did as she was told, but because of insurance problems, UCLA put my psychotic sister out on the streets of Westwood at midnight on a Saturday night. For three days, my mother recounted to me recently, she had no idea
where Melanie had gone.
Mom didn’t have to remind me how that story ended. On the night of October 30, 1980, I went to my first Bruce Springsteen concert. I knew his lyrics almost as well as he did, so I had spent over four hours singing along with him at the Forum in Inglewood. About 30 minutes after I went to bed, my father jolted me out of my postconcert euphoria with the news that the police had found Melanie and I would have to help Mom take her to a mental hospital in Van Nuys because he had to catch an early-morning flight to an important meeting. I have a foggy recollection of sitting in the front seat of our green Buick Regal parked on the street outside of our San Fernando Valley one-story house, waiting for my mother to get in and drive us to Van Nuys, with Melanie mumbling in the backseat about having been raped while I tried to figure out whether what she was saying could be true. Not having a clue what to do, I kept quiet. The doctors later told my mother that Melanie had imagined it. St. John’s, the facility where we brought her that night, took good care of her, and that was the first step in Melanie’s long fight back against bipolar affective disorder. But UCLA, the medical center with the finest reputation in Southern California and the campus from which both of my parents were graduates, had turned her away. Now, UCLA had a chance to redeem itself.
Before she could have the autologous transplant, Melanie had to undergo consolidation chemotherapy. It was the same drug regimen as the induction but lasted only five days. Dr. Davidson wanted to wait until her lung infection resolved, but consolidation has to start within six weeks of the successful induction, so before she could finish the anti- fungal treatments, she transferred from Northridge to UCLA, where her oncologist, Dr. Schiller, had to get her started and hope the fungus wouldn’t get out of control while the drugs destroyed her immune system. Because he thought it would improve Melanie’s chance for survival, Dr. Schiller persuaded Melanie to enroll in a clinical trial in which she would receive Interleukin 2, a “cytokine” that some cells in the immune system use to communicate with one other. Melanie’s toughness prevailed; the fungus did not spread. Seventeen days after finishing consolidation, her nausea, diarrhea, and infections had all sub- sided, and for the first time in almost three months, Melanie went home on July 7, 1999.
Melanie’s completion of the first two treatment rounds gave her and us our first chance to be a bit optimistic. As the only physician, I was the one family member who, from the day of her diagnosis, realized that she probably would die. “I’m too young to be losing my sister,” I remember telling my wife Terry that night through angry tears. My mother, who had lost her mother, her favorite aunt, and her favorite uncle in the early 1990s and had thereby become the matriarch of her family, caught on early, in part because of a phone conversation I had with her in which I remember asking, “Do you know how bad this is?” She didn’t, so I told her. I did the same for Bettina, but she later told me she was sure Melanie would not die, and I think our brother John held the same belief. Melanie was younger than the average AML patient. Having survived two chemotherapy cycles with her disease in full remission, it seemed reasonable to think that she had a better chance than most people in her situation.
We also knew her capabilities. Paving the road ahead of us through our school years, she set a standard that none of us could match, even though we were all bright kids. A National Merit semifinalist in high school, she did even better at Wellesley College, where she studied under Robert Pinsky, the recent United States poet laureate, and earned Phi Beta Kappa honors in her junior year. A Durant scholar (Wellesley’s equivalent of summa cum laude) as a senior, she also scored a 47 (48 was the highest possible score) on the LSAT, which is why Harvard, Stanford, Boalt, and all the other law schools to which she applied accepted her. It was during finals week of her first year at Stanford that her bipolar affective disorder, which she would battle for about 23 years, made its first serious intrusion into her life and ended her law education. Melanie never spoke much about what happened, but I know there were suicide attempts. For two decades, she tried almost every medicine avail- able, studying the effects of each as she went along, and figured out which symptoms responded to each drug at what cost (side effects and price). Through her meticulous approach and careful collaboration with a superb psychiatrist, Dr. Tracy Cogbill, Melanie emerged after two decades of intermittent inner chaos with her own spacious three-level townhouse in Encino, a full-time editorial position at Blue Cross, and a career path as a professional counselor. She was over halfway through a master’s program in marriage and family counseling at Pepperdine.
She had battled many lesser problems, too. Inheriting the worst teeth and eyes of the four of us, Melanie had the most orthodontic treatments and thickest lenses. Acne scarred her skin, and she had such severe allergies that on several occasions during our childhood she woke up with her eyes swollen almost shut from a reaction to an unknown agent. Obesity arrived in her early adolescence to dent her self-esteem and feed her bipolar disease. Melanie’s woes made up a genetic mystery, as our parents are thin and tall with smooth complexions; Melanie topped out at five feet, four inches.
Despite all of this, her thick, long, almost black hair, great big brown eyes, and broad smile against her soft facial features made her striking in her youth. In high school, she appeared on television representing John F. Kennedy High School in our native Granada Hills as the student selected to provide commentary on current events, and my mother recalls that she looked great on TV.
Because she was the oldest, we looked to her to be first. My mother taught me to read while we watched Melanie learn to ice skate; we all pursued our own sports later. In her teens, Melanie bought every new Beatles album and would greet with amusement, not anger, her skinny, overly emotional youngest brother when I would plow into her bed- room, brimming with all the talent one would expect of a five-year-old, to accompany the Fab Four with my toy horn, drums, and triangle. We all followed her onto our high school journalism staff, and she was the first of three of us to become a professional writer. It seemed reasonable to assume that AML would just be another stone in her backpack, and she would be the first of us to beat a life-threatening disease.
She had a month at home before her trans- plant, much of which she spent going out with Mom for short walks and movies. Mom had taken leave from her life’s routine (most of which revolved around her volunteer work for the American Association of University Women) when Melanie first entered the hospital, visiting her almost every day and spending the rest of her time keeping Melanie’s affairs in order. Insurance matters required several hours of work daily, as the medical bills ran into the hundreds of thousands of dollars. Mom also took care of Melanie’s townhouse and Nelly, the black cat who, much to Melanie’s chagrin, developed a strong attach- ment to Mom during Melanie’s long absence.
People and animals tend to form lasting bonds with my mother. An only child who spent much of her childhood learning how to please two demanding parents, she uses her dyed-blond hair, friendly smile, blue eyes, and indefatigable positive outlook to make anyone feel welcome and part of the group.
Ever since Melanie’s first experience at UCLA Medical Center, Mom had served as one of her daughter’s two most important crisis resources. The other was Dr. Cogbill, who from the beginning in 1980 recognized Mom’s importance to Melanie, persuaded Melanie to let Mom help her, and became Melanie’s guide through the minefield of her bipolar illness. He was the main reason she did not follow her three siblings when we all moved to the San Francisco Bay Area. Later, he introduced Melanie to the AIDS Project of Los Angeles hotline. Volunteering for the hotline began Melanie’s counseling career and threw her into crises worse than her own, giving her necessary perspective on her own problems. Melanie became a dedicated APLA hotline volunteer, working at least one shift per week and frequently taking shifts on holidays.
That physical distance between her and her siblings reinforced the barriers in our relationships with her. Melanie’s introverted nature and her illness kept the rest of us from establishing intimacy with her, particularly during the 1980s, although her presence and involvement at all of the important holidays and events, from my medical school graduation to my daughter’s baptism, made it clear how much we mattered to her even during her worst years. As her will won over control of her life, our interactions became more fun. During my residency in Maine, Melanie came to visit me. It gave her a chance to return to New England, which had been so good to her, and to travel. About seven years earlier, she worked as a writer for Traveling Times, which sent her to many cities across the United States but never overseas. Knowing how much Europe fascinated her and how much she wanted to go there, particularly to France, I took a few days off in 1991 and drove her to the city of Quebec, where I used to go about four times a year while I was in Maine to escape my job and surround myself with French speakers and a European ambiance.
Melanie loved it. I took her to dinner at my favorite creperie, Le Café Caisse Breton. We walked all over the old city, with the chill of early spring in the air, toured the street galleries, and promenaded along the boardwalk high above the expansive St. Lawrence River. I remember taking her to a bank to exchange currency, and when she began with great effort to speak the French language she had studied about 20 years earlier and read in so many novels since, I blurted out, “They understand English!” before I realized that she was living a dream.
“I know!” she admonished her little brother. She could have followed with “Now buzz off!” but to be rude on a matter of no importance would have been out of character. She spoke French and made herself understood: another triumph for the will of my sister.
Although she had a few very close friends from Wellesley and from various jobs, Melanie’s social life in the 1990s centered around Mom, and Mom was a willing beneficiary. Melanie always told her which exhibits, ballet companies, musicians, and plays were coming into town, and Mom could count on her to get tickets and excellent seats to those that mattered. When Mom could not go, Mom’s friends often profited. Nina, a Russian immigrant and my mother’s daily walking companion from about 1976 to 1994, loved to go with her to art shows and take advantage of Melanie’s encyclopedic knowledge. Mom remembers going to a van Gogh exhibit with Melanie after finishing the chemotherapy treatments, and just before they left, Melanie paused before one of the Dutch master’s paintings and remained motionless for a disturbing length of time before exiting the building without saying a word.
Not wanting cancer to derail her chance at a master’s degree, Melanie made many inquiries at Pepperdine and was able to delay her deadlines for courses and clinical counseling hours. When UCLA harvested her stem cells for transplantation, they gave her the good news after the first day that they had enough cells. She would not have to do the usual two-day harvest.
On August 9, she went back into the hospital for three days of radiation and two days of chemotherapy to erase her bone marrow stem cells, and on August 16, she had her transplant. Several weeks of sore throat, diarrhea, and fatigue later, Melanie came back home on September 1, having survived her AML treatments, and we all looked ahead to her recovery and resumption of a more normal existence.
Except that she kept requiring transfusions of blood and platelets, at least once and often twice weekly. As this continued on through October and into November, Dr. Schiller continued to be as reassuring as possible, telling us to be patient, and I tried to reaffirm this positive message during my conversations with Melanie and my mother, but it was becoming apparent that her transplant had not “taken” and that her marrow was neither making platelets nor red blood cells. This was not a disaster, but it promised to make Melanie’s life more complicated for months to come. At least there was not any sign of leukemia.
As November progressed, Melanie’s nausea crept back. By the middle of the month, she was vomiting yellow fluid, and a week later she called me because she was back at UCLA with a fever of 102.5 degrees and “some stuff on my chest X-ray” suggestive of pneumonia. Treatment with powerful intravenous antibiotics did not help, and four days later, she was unconscious on a ventilator. Her basement membranes, through which the oxygen we breathe diffuses into our tiny lung capillaries, had swelled and become clogged with debris. On X-ray, her lungs had the appearance of ground glass. Two days after Thanksgiving, Melanie had a disaster: adult respiratory distress syndrome (ARDS).
So we weren’t fooling around anymore. Melanie could be dead within days. If I had been my own patient and called myself on the phone, I would have known what to advise myself, but I had never faced this situation with an immediate family member, so I called Budd, my boss, so he could state the obvious: “Jim, you have to go there, don’t you?” Our staff would take care of advising and rescheduling my patients. My wife, now five months pregnant, and I packed our bags, took a flight to Burbank with our 18-month-old daughter Mia, and drove to Encino, where my mother and Nelly met us.
For the next two months, the townhouse would become our Southern California home. I like irony, but I never became comfortable with the notion that we never saw Melanie when we came to Melanie’s townhouse, although she had imprinted herself in it such that it could not have belonged to anyone else I knew. The predominantly white walls accented with her favorite dark blue trim and wicker furniture below the high ceilings gave it the wide-open look she preferred. Posters of works from Matisse and other preferred artists adorned the walls, and bookcases full of literature interspersed themselves with impeccable organization in every room, including the kitchen and dining room. Family photos in stylish frames decorated the tables and other furniture. She displayed large conches and dozens of other seashells that had belonged to my mother’s mother, with whom Melanie had traded volumes of letters from her college days until Grandmama died in 1993. Driving home her absence at the end of every day we spent there, Terry and I slept in her bed; Mia shared the room on a couch mattress on the floor.
Like my mother and sister, I had a “past” at UCLA Medical Center, so our drive there the following morning was a strange sort of homecom- ing. Sixteen years earlier, as a college sophomore, I had padded my pre-med résumé by working a sum- mer in the Head and Neck Surgery Division, research- ing the anatomy of the eighth cranial nerve of the squirrel monkey. So on the way to my sister’s ICU bed, I had that transplanted feel- ing you get when you’re in a familiar place but none of the people you associate with it are present. On the elevator I stood next to medical residents in their long white coats, young doctors whom I used to find intimidating and who now were working to get where I am. I derived little comfort from that. I never thought I would visit a fam- ily member within this enormous structure, with the white walls, bright lights, and shiny floors extending down labyrinthine hallways.
Despite its blinking monitors and rhythmic machines, the eight-bed ICU seemed cozy and even relaxed compared to the hallway environment. Having left Terry and Mia downstairs because small children cannot come to the ICU, my mother and I found Melanie’s room. Mom, always the host, introduced me to Marina, the charge nurse, a stocky Eastern European and one of those bright, calm, veteran professionals we all want at our bedside during our worst moments. Later, I would meet the whole ICU “team” for the month, from the intern to the attending physician, and they graciously allowed me to participate in their work rounds, when they come to the bedside to dis- cuss the events of the past 24 hours and the treatment plan.
They didn’t have any surprises for me. Cultures of Melanie’s sputum, urine, and blood had all failed to identify an infectious cause for her sudden respiratory collapse, but they were con- tinuing the antibiotics and antifungal medication in case there were bacteria or fungus present that had evaded their attempts to isolate them. They were increasing the ventilator’s oxygen concentration and the amount of air pressure at the end of each breath, which would keep Melanie’s tiny bronchioles open so they would keep accept- ing each new mechanically generated breath and to help force the oxygen through her damaged basement membranes. Higher pressures and higher oxy- gen concentrations cause more permanent damage to the lungs, and therefore we try to “wean” these ventilator settings down as quickly as possible, preferably within 48 hours, to allow for better long-term survival after people come off the ventilator. They had infused a medicine to paralyze her so that she would not use any more than the minimum amount of pre- cious oxygen in her muscles. Melanie was in a ter- rible situation. The only good news was that she didn’t show any signs of recurrent leukemia, although she still wasn’t making her own platelets.
Her condition remained about the same for the next couple of days, and we all decided it would be best for me to return home. As the family health expert, I made daily calls to my mother and the ICU and then updated Mom, John, and Bettina.
Christmas approached. As Melanie entered her third week of unconscious paralysis on 100 percent oxygen and high levels of PEEP (positive end-expi- ratory pressure), her pulmonologist began to talk to us about discontinuing life support as her chance of survival was drifting below one percent. I knew they had given her the highest level of care and used the most advanced techniques, including turning her on her stomach intermittently to improve her ventilation. I was a family practitioner talking to the best specialists at one of the premier hospitals in the United States, but Melanie always had great faith in her “little brother,” and I had to fight for one last intervention.
“Can you please start her on steroids?”
I had discussed this with the ICU team before, and they had not agreed because clinical trials in which ARDS patients received anti-inflammatory steroids failed to show any increase in survival. But we had never figured out what caused Melanie’s ARDS, and I remembered those odd allergic reactions she used to have as a child, and steroids suppress allergic reactions. Steroids also suppress the rest of the immune sys- tem, but what did that matter now that we were about to discontinue life support?
They agreed, and I thanked them. I knew that, in the end, we were doing this more for my peace of mind than for Melanie’s health. I let my boss know that I would probably have to go down to UCLA again within a few days.
Two days later, Melanie’s lungs showed some subtle improvement, as her blood oxygen levels rose and her carbon dioxide levels fell. Within a few days, the ICU team was turning down the ventilator settings, not to let her die, but because she was getting better. We all decided it would be safe and beneficial for Mom to get away for a few days to come up and spend Christmas with us. Sitting at the head of our long mahogany table, I allowed myself a little trite optimism and, to Bettina’s dismay and amusement, quoted the Counting Crows’ Adam Duritz: “It’s been a long December, but there’s reason to believe that this year will be better than the last.”
We opened our gifts. Mom mentioned to us that Melanie’s restricted energy had shortened her Christmas-shopping excursions, but, to the surprise of none of us, she had gone out in November and bought each of us a gift one trip at a time. She gave my wife and I a tin of scrumptious chocolate-covered popcorn from Neiman-Marcus.
While we celebrated, Melanie’s doctors weaned her ventilator oxygen concentration below the critical 50 percent level, where oxygen no longer damages the lungs. We were living a Christmas miracle, and the thought that I might have saved my sister’s life was more than I could handle, so I tried not to think about it. During her chemotherapy, Melanie had appropriately warned me not to get too involved in her treatment, and Bettina remembered. “If you ever want to meddle in my care, Jim, go right ahead,” she told me during the holidays. Mom went back home to be present when they discontinued Melanie’s paralysis and allowed her to wake up. Terry, Mia, and I made our annual visit to my mother- in-law’s home in a trailer park in New Port Richey, Florida, but arranged to return through Los Angeles so we could see Melanie again on New Year’s Eve.
Marina, the wonderful charge nurse, greeted us with enthusiasm. “There are two reasons for Melanie’s recovery,” she proposed. “The first is that we ventilated her in the prone position. The second is that about two weeks ago, Dr. Bellamy decided to start her on steroids.” Mom smiled at her son.
I don’t remember much from that visit, perhaps because my sister wasn’t yet quite back with us. Terribly debilitated from three weeks of paralysis, she still required intermittent breaths from the ventilator, and although she was awake, her eyes did not register a look of recognition. But on the night of her birthday, January 4, Melanie, with Mom’s help, called me at home.
“Hello, Jim.” It was her voice, exactly as I had heard it thousands of times before. She sounded so normal. I could not put a thought together. I paused, much as a filmmaker would, to allow me to appreciate the real-life drama’s full impact.
“Hi, Melanie. Welcome back.” It soon became obvious that she was still way too weak to speak much, and she wasn’t able to main- tain her thoughts from one moment to the next. I knew we would get to talk more in the coming days, so I told her how great it was to hear her voice and that I looked forward to seeing her again soon. I could not convey the epiphany of the moment; I don’t think I have ever been happier in my life.
“I am dancing amongst the stars.” Melanie had just been awarded her Phi Beta Kappa membership, and she was writing this to Grandmama in the spring of 1976. Melanie thrived at Wellesley College. Most of her weeks there she wrote us letters, many of which raved about the placid Lake Waban, the fall colors, the cherry blossoms, and the charge that studying under poet Robert Pinsky and other gifted faculty gave her. Pinsky wanted Melanie to write poetry and pursue graduate studies in English literature, but Melanie gave in to practical career con- cerns and chose law school.
During her efforts to defy death, I had often wondered whether Melanie had experienced much unbridled joy, and in coming across the letter to Grandmama, I felt comforted. I knew that she had not had anywhere near the amount of fun that her brothers and sister had had in our lives, but at least fate had not cheated her completely. She adored Wellesley, and Wellesley had loved her.
Most people who choose to become medical professionals do so because of the satisfaction we feel when we help someone who needs us. Melanie was still too weak to feed herself in the days after she graduated from the intensive care unit, so a well-intentioned caregiver gave her something to drink. This person either forgot or did not know that Melanie’s swallowing evaluation a few days earlier had shown that she was not yet ready to handle thin liquids. Someone else had made the mistake of putting a tray full of food in front of Melanie. I do not know whether Melanie coughed or choked when some of that misguided fluid flowed past the epiglottis, the valve that directs food to the esophagus and air to the trachea, and down her trachea toward her lungs, upsetting the delicate equilibrium that had allowed her escape from death and the intensive care unit. Perhaps she did not detect the fluid’s errant path and relished the sensation of quenching thirst with a cool drink. But 48 hours later, she was once again intubated and on the ventilator because of aspiration pneumonia. As I explained a few weeks later to the quality-control nurse investigating the incident, “That person might just as well have plunged a knife into my sister’s chest.”
I resumed the abominable routine of calling the ICU for daily updates as Melanie once again sank into respiratory distress syndrome. The ICU team’s mood reflected that of our family, as they realized that their enormous effort and subsequent victory had unraveled with one move by one careless person. The high ventilator settings began taking their toll, as one small area of Melanie’s lungs finally burst, creating a small pneumotho- rax, or air leak, into the chest wall around the lungs. Such leaks send air directly into the chest outside the lungs, compressing them and making them even more difficult to inflate with air. The remedy for this is cutting between the ribs to jam a tube through the chest wall to suck out the air, but our family had decided that Melanie had had enough pain.
After two weeks on high ventilator settings, it was clear that Melanie was not coming back this time. We tried the steroids again, but aspiration pneumonias don’t respond to steroids, so it didn’t surprise any of us that they did not work this time. Melanie had had her miracle; we all knew it was a bit much to hope for another one. Terry, Mia, and I got in the car and drove seven hours to meet my mom at Melanie’s townhouse the night of January 26, 2000. John and Bettina both decided they did not want to see Melanie again in her current state, preferring to remember her as she had been most of her life. They made plans to come down in two days.
The following morning my mother and I returned to the ICU, knowing that whatever jury of fate decides who lives and who dies had come to a verdict for Melanie before our arrival, and now it was our time to get out of the way. As she lay motionless on her back, with her thick dark hair now mixed with gray just starting to grow back, amidst the beeps and whooshes of the monitors and ventilator, I marveled at how thin she had become. She had struggled all her life to look like this, and now that she had arrived at her goal weight, she would never know it. I told Marina and the ICU team that we were ready to give up. To their credit, none of the group tried to change our minds; in fact, I detected a touch of relief in their disappointment.
As we sat by Melanie’s bedside, Mom and I told each other Melanie stories. Dr. Schiller stopped in and greeted us. I asked him the question that had bothered me for months: were we really sure which disease we were treating? In med- ical school, we learn that we diagnose acute myelocytic leukemia when a patholo- gist reviewing a slide he or she prepares from a sample of bone marrow finds a characteristic pattern of abnormal immature granulocytes. This had never happened to Melanie’s bone marrow; instead, her cells had a combination of abnormal chromosomes. “How good is that for making the diagnosis?”
“It’s pretty good,” he tried to reassure me, and he did convince me that he and Dr. Davidson had done what needed to be done. He was more concerned with the decision we had reached. “As you saw last month, we can never know absolutely what will happen.”
My mother and I knew Melanie better than he did, and Melanie did not want to subsist with the kind of crippling lung disease with which she would emerge from this, even if she beat leukemia. Dr. Schiller wished us well, gave us a sympathetic smile, and left. The respiratory therapist continued to make inter- mittent visits to the venti- lator to turn down the settings. To avoid the poten- tial nightmare of having an awake, suffering patient who couldn’t register any protest because of paral- ysis, Marina slowly turned off the vecuronium, the paralyzing agent. When one of the doctors told her this was unlikely to be nec- essary, she pointed her index finger skyward and said, “One day, I have to answer to Him, too.” She did not turn off the intra- venous morphine.
I made occasional visits downstairs to see Terry and Mia, but for most of the afternoon, I stayed with my mother. Between long silent periods, we made some conversation with Melanie, and as the afternoon faded into evening, Melanie’s skin began to turn the light violet-red hue that carbon dioxide intoxication brings, and her blood pressure began its final slow descent.
With the realization that Melanie’s final few minutes had arrived, I felt that someone had hooked my insides to an amplifier. I was not quite terrified, but the numbers on the TV monitor above her bed seemed to be screaming their message, something like a night drive through Las Vegas: 82 over 50...62 over 49. Now standing next to my mother, I left her for a moment, went to Melanie’s right side, grasped her hand and kissed her forehead. “Goodnight, Melanie. I love you. Have a safe trip.”
I walked back over to my mother and tried not to think about what it must be like to see your first-born die; we stood with our arms around each other and watched. The heart moni- tor recorded her pulse rate in her final moments, as the spaces between the spiked QRS complexes recording each beat grew longer, more assertive. The numbers fell: 48...30...9...0. Flat line, long beep, Melanie’s life over at 6:31 p.m.
As I sat on the side of Melanie’s bed that night just before attempting to go to sleep, I marveled at the power of grief. “I thought I would get some sense of peace and resolution now that this is over,” I confessed to my wife as my body shook with the intermittent convulsions of sobs whose randomness and strength felt much like the purging sensation of vomiting.
“No, it’s worse.” She knew this from her father’s death from lung cancer.
The cat stirred in the hallway outside of our door, reminding me of Melanie’s final sentence in her will: “Please take care of Nelly.”
“What a waste” was the woman next door’s reaction to my news the next morning, and I could relate. Having had a few phone conversations with Melanie about the com- plex patients, I felt as though someone had denied us this new phase of sharing our experiences and supporting each other that could have lasted decades.
But a waste it was not, unless you ignored the previous 44 years. Upon learning of her death, many of Melanie’s friends and coworkers sat down and recorded pages of accolades praising her counseling skills and contributions to their lives, the perfect tribute to a writer. I imagine, given her love of literature, that at times Melanie fantasized of a writer portraying her as the heroine of a classic tragic tale. Well, dear sister, here it is. I gave it my best shot.