Grief Connects Us

by Joseph D. Stern

  The donor cells, even though they are close to a perfect match, will still identify the cells of the recipient as foreign and, therefore, a threat. Without strong drugs to suppress the body’s immunity, these donor cells will attack the recipient’s organs and try to kill them off—a graft-versus-host reaction. This can prove fatal. The drugs that suppress the immune response leave the patient vulnerable to infection by bacteria, viruses, or fungi, making the need for isolation that much greater.

  Because of their susceptibility to infection, transplant patients are not allowed to leave the hospital. And even after they stabilize following transplant, they must stay nearby so they can be rushed back in the event of sudden illness. Even though Victoria had only come from across Los Angeles, her transplant team felt the distance would be too far to go if she became ill. Therefore, she was required to stay on the grounds of the hospital, or at least within a few minutes’ drive, for the first hundred days after her transplant.

  I wanted to meet the doctors and establish the timeline for treatment. With Dr. Fischer, I had been able to speak candidly about the severity of Victoria’s leukemia, and we both acknowledged the unfavorable odds. At City of Hope, it was difficult to develop allegiances with my sister’s team of doctors. They were overwhelmingly busy, acutely aware of the precariousness of each patient’s condition, ordering and analyzing dozens of blood tests, trying to fine-tune each treatment. With leukemia and bone marrow transplants, timing is everything. The hospital relied heavily on the nurses to reassure and educate the families of their patients. I was grateful for their compassion and willingness to answer my sister’s questions. Most of the time this was helpful, but occasionally some of the explanations were confusing and added to Victoria’s sense of foreboding and anxiety. I began to see that while the hospital represented hope and great medical advances, it was also a place where people came to die.

  CHAPTER FOUR

  reconnecting/first visit

  There is no profit in curing the body if, in the process, we destroy the soul.

  —SAMUEL H. GOLTER, AN EARLY LEADER OF CITY OF HOPE

  I arrived at City of Hope for the first time on a sunny, mild Saturday and set about gathering information on my sister’s case. One of the hematology fellows on duty informed me that no decisions would be made until Dr. O’Donnell returned on Monday. Fortunately, the nurses dedicated to the care of my sister were very supportive. Many of them commute hours to work at City of Hope and feel a passionate commitment to their patients and to the mission of the hospital. I came to appreciate nursing care in a whole new light; the nurses were our lifeline and spent hours tending to my sister in her room. They changed and maintained her IV lines, and helped her to the bathroom and occasionally to the shower; they constantly tended to her beeping IVs and pumps, which delivered intravenous medications. Attuned to my sister’s physical and emotional needs, they were readily available and caring, often making encouraging comments that helped to relieve moments of despondency, quell Victoria’s anxiety, and bridge the long gaps between visits from her doctors.

  City of Hope’s research and clinical buildings are sprinkled over the grounds, surrounded by gorgeous gardens. Victoria’s room was in the tallest building, Helford, where most clinical care is administered.

  As I got off the elevator, I was struck by how empty the hospital seemed. There was no one in the waiting area or in any of the hallways leading to my sister’s room, apart from occasional personnel. I was used to the hustle and bustle of the hospital at home, with families filling the patient hallways, carrying flowers, and talking on their cell phones. There was a large window at the end of the waiting area, and below I could see the lush green gardens and flowering trees. Inside, all the doors to the patients’ rooms were closed.

  Even though the world of hospitals is familiar to me, I felt afraid as I headed toward my sister’s room. A nurse had apprised me of the strict protocol and visitation rules. I was not permitted to hug or even to touch Victoria. I had tried to prepare myself emotionally, but I didn’t know what to expect. Would she look terrible? Would her pallor or frailty frighten me? I felt driven to see her, but at the same time I was apprehensive about what she would be like. I knew that she had lost all her hair and color. Would she still seem like my sister, or would she seem like “a cancer patient”? I felt like a foreigner in a strange hospital, a doctor who understood the systems in place to care for patients, yet without any connection to the medical or nursing staff to make me feel relevant.

  I knocked on her door, washed my hands at the sink outside her room, and donned a mask, gown, and gloves from a cabinet above the sink, just as I would do when scrubbing for surgery. When I entered her room, my dread and foreboding were replaced with a surge of relief. Victoria seemed full of energy, with the same buoyant optimism that had seen us through the tumultuous London years. She was bored by the lack of human contact and the sterile environment, but otherwise she was the same sister I had always known and loved. While any physical contact was strictly forbidden, I could tell that she shared my sense of relief. I looked right through the hospital setting and equipment to Victoria, bald, in a hospital gown, and wrapped in blankets, but still projecting warmth, with the same wry, mischievous smile she always had.

  The years of separation dissolved. With so much common history, we didn’t need to explain ourselves. Just being together felt reassuring. Victoria had decorated her room with large pictures of Nick and Will, photos of Pat, and a family portrait of the four of them on the beach in Santa Monica. Adding a personal touch to her otherwise antiseptic hospital room was challenging given the many restrictions placed on patients with severely compromised white blood cell counts. Visitors were limited to a few friends and family members, and we were not allowed to bring living things like flowers or plants. Simple activities, like walking in the hall, were prohibited. While Victoria could look out onto the gardens below, even cracking open her window was forbidden.

  She had lost most of her hair, including her eyebrows. Normally immaculately coiffed, my sister had tired of the bald patches and itchiness and asked the hospital beautician to shave her head. She lost her appetite, eating sparingly because of her nausea.

  A large whiteboard on the wall across from Victoria’s bed served as a focal point and spelled out the various blood draws, procedures, and maintenance schedule for the day.

  Phone numbers for family contacts were inscribed in the upper corner of the whiteboard, along with the names of her doctors, medical team, nurses, and aides. Below them, posted in blue marker, were her recent laboratory results. On any given day, she might get a transfusion of platelets. This was done when her platelet count fell below 20,000. The normal range for platelets is 150,000 to 300,000. Without platelets, you are at risk of spontaneous bleeding from the gums or nose, and you can also bleed internally into your organs or brain. The chemotherapy had wiped hers out, but transfused platelets do not last as long as your own, so the number had to be checked each day. Victoria’s daily regime was a balancing act, and her body’s individual responses to the assaults of chemotherapy and radiation were still unknown. We had entered a new world of blood counts; even small changes seemed significant and could bolster us or send us reeling.

  The doctors and nurses watched my sister for signs and symptoms of bleeding, especially tiny bloody splotches under her skin called petechiae, an indication of bleeding due to a low platelet count. Just as her platelet count was dropping, the same was true of her red blood cell count. As her blood count drifted lower, Victoria regularly received units of blood. The trigger to transfuse was a hemoglobin count that dropped below eight; a normal red blood count is in the range of twelve to fourteen. The nurses were vigilant about checking her vital signs, watching for symptoms of a low blood count (which could indicate anemia) such as tachycardia, an increased heart rate (above 100 at rest would be cause for concern), low blood pressure, or dizziness on standing. They also checked her temperature at regular intervals; with a lo
w white blood count, she was at high risk for infections of any kind.

  Every morning, an automated blood count was entered onto the whiteboard in Victoria’s room, and later in the day on Monday, Wednesday, and Friday, a differential was also registered. This was a hand count of the types of white cells circulating in the blood. Her overall blood count was very low at 100 or 200, with normal being 4,000 to 10,000. From this, the pathologist would calculate the ANC, or absolute neutrophil count, which would generally run from 200 to 500, as well as the percentage of circulating blasts in her blood.

  The ANC is a measure of the white cells available to fight bacterial infections. This number would determine whether Victoria could have visitors or, better yet, whether she could leave her hospital room. Anyone with illness was barred from visiting, as even a simple cold could kill her. With no ability to fight infection, she was at risk of fungal infections or sepsis caused by accidental cuts. During her stay in the hospital, and later, following her transplant, my sister was not allowed to eat any fresh food, especially things like salads and fruit, which she craved, because of the potential exposure to bacteria she would be unable to fight off.

  The blast percent is a number indicating whether or not the chemotherapy is effective. When she was first diagnosed, Victoria’s white count was over 30,000, with 40 percent blasts. As the chemotherapy killed off her white cells, the percentage of blasts decreased. Often this number would hover around 10 percent, but as the chemotherapy produced results, the blast percentage dropped to 2–3 percent and eventually to zero. Unlike the red cells and platelets, the white cells cannot be replaced. Drugs can stimulate white cell production, but giving these to patients with leukemia would stimulate the leukemia as well. It is not possible to transfuse someone else’s white cells without causing a significant reaction of fever and illness.

  Next on the board was a list of the active medications Victoria was receiving and a schedule for her day, which would include chemotherapy and infusions, as well as visits from physical therapists, spiritual counselors, social workers, and various other support staff. Before I’d arrived, Victoria had a peripherally inserted central catheter (PICC) line inserted into a vein in her right arm, extending to the superior vena cava, the large central vein returning blood to her heart. A Christmas tree of intravenous lines was connected to the PICC line, delivering steady infusions as well as “piggybacks,” or dosages of drugs, which are attached to the infusion line. In addition, the PICC sent “pushes,” drugs given throughout the course of the day, into the intravenous line. My sister was on three antibiotics, an antifungal infusion, and antiviral medications, in addition to her chemotherapy drugs.

  The intravenous line assembly was her albatross; she had to tow it with her to the bathroom, and it stood sentry next to her bed while she slept. With a line assembly, things we take for granted, like changing clothes and showering, suddenly become complicated and require nursing assistance to disconnect and then reconnect the PICC line. All my sister’s personal care was now scheduled by the hospital staff. Much of her day was occupied with the managing of her intravenous lines and pumps, calling for her nurse when an alarm would sound, waiting for the unit clerk to respond, and reporting the problem to the clerk, who would find the nurse, who would come to her room to correct the problem.

  This seemed like a poorly choreographed dance that managed to inconvenience all parties. The time between crises could be five minutes or, with a little luck, several hours. Between the interruptions of the nurses, staff, dietary services, housekeeping, and ancillary personnel, it was difficult to get sustained rest. The interruptions went on throughout the day and night. This too, I realized, was part of life in the hospital. I was used to being up much of the night on call, but I always knew I would eventually leave and find my own pillow at home.

  Chemotherapy can cause severe nausea and vomiting, depending on the agents being used to treat the cancer. Fortunately for Victoria, although she often had a low-grade nausea, she rarely vomited and generally was tolerating the medications quite well. When she spiked a fever, she would undergo a “fever workup,” which included a battery of tests such as blood and urine cultures, nasal swabs, and chest X-rays. The thinking was to jump on any infection quickly, before it spun out of control. Rapid interventions could be made, either adding new antibiotics or changing the medications she was receiving. Fortunately, these fever workups were almost always negative.

  Apart from enduring boredom, Victoria wanted reassurance that she would get better, that she would survive. She also wanted information and explanations about the drugs and treatments and their protocols. She wanted to know what was coming so that she could pace herself as she fought her way back to health. Her initial focus was getting through the chemotherapy, finding a donor, and then having the transplant. Next, there was a required three-month stay at City of Hope, where she would remain indoors and largely isolated. At the end, if all her blood counts and symptoms appeared normal, she would be able to return to Santa Monica and attempt to pick up her life where she had left off.

  She was just restarting an acting career after a prolonged hiatus to raise her two boys and run the household. Earlier in her career she had appeared in multiple television shows, including Law and Order and Boston Common, and in a variety of stage productions. She’d also starred in the award-winning short Ladies’ Room LA, which she produced with Pat. Prior to her diagnosis she had begun auditioning again and was getting callbacks and being offered parts. Never the ingénue, she was an actor ahead of her years and had finally grown into the age of the characters she was most suited to play. Isolated at City of Hope, she wanted to get back to her family and the tremendous friendships she had cultivated. For Victoria, a profoundly social person, being cut off from her world and friends was a form of torture.

  Victoria wanted to understand her disease in the abstract. What was AML, how did it work, how do white blood cells work, what are platelets, how do we produce blood products, where were the cancerous cells living in her body? She was impatient with her leukemia, since it had arrived uninvited from out of nowhere and taken over her life. She wanted to understand tumor suppressor genes and why she had developed leukemia in the first place. She wanted to understand what was happening, but also whether her illness could be passed to her children and what tests could be performed to protect them from a similar fate. Yet, while she wanted to learn more about AML as it related to heritability so that she might protect her children, at the same time she did not want to learn the specifics of the disease as it related to her.

  I tiptoed around the elephant in my sister’s stark white room, aware that she was stubbornly pushing away the idea of death. Victoria fully embraced her treatments, including her doctors and the goal of cure. She was at one of the best institutions available and statistics didn’t matter—after all, she was not an actual statistic herself. Some people survived this illness, and she was going to be one of them.

  She believed that attitude, focus, and complete commitment to cure would get her through and, ultimately, suffice. I worried that I would telegraph my skepticism, that she would read my face and see my fear and uncertainty, leaving her no choice but to acknowledge her dire predicament. Perhaps driven by her own terror, she did not seem to perceive my growing discomfort in the face of such dismal odds. I did not know how I would handle such a diagnosis myself.

  In When Blood Breaks Down: Life Lessons from Leukemia, Mikkael Sekeres captures this attitude and the tension between hope and denial in patients diagnosed with leukemia: “People who choose to receive the most aggressive chemotherapy may choose to remember the best odds, or exaggerate those odds, to bolster the justification for their decision. Or, some may enter a type of adaptive denial to cope with both their diagnosis and the long-shot odds of chemotherapy curing them. A more positive spin on this coping mechanism is to call it optimism, or hope—both of which have been associated with better outcomes among cancer patients.”

  Hope is extre
mely important in surviving cancer. A good friend of mine, no stranger to adversity, who also trained as a neurosurgeon, once said, “There is no such thing as false hope; there is only hope.” Victoria believed that she would recover. When we sat together in her room, she maintained her sense of humor, telling jokes and fondly recollecting events from our childhood. Our conversations meandered, moving freely between the present and our shared past. When the subject shifted back to her illness, I would answer her questions and stop when she no longer seemed interested or when she grew tired. I was grateful for my medical knowledge, even though I was not intimately versed in the treatments for leukemia. I felt I had something useful and concrete to offer.

  At times, our chats about leukemia were no different from the interactions I have had with scores of patients and their families. I am often the first one to know that my patient has a malignant brain tumor. Laying out the truth and the treatment options with the family is part of my job, but it never gets easier. How do I tell the family while the patient is not present and is in the recovery room waking up from the immediate effects of anesthesia? Some families, as do patients, want to know everything, from prognosis to future treatments, while others want to know nothing at all. Hope and optimism are important drivers of survival and recovery. When patients ask, “How long do I have?” I am always reluctant to give a specific answer. The truth is, I don’t know. And I may be wrong, either with the diagnosis or the prognosis.