Grief Connects Us

by Joseph D. Stern

  Victoria kept a journal describing her experiences as a leukemia patient and her bone marrow transplant. Her reflections have been threaded throughout Grief Connects Us. I also explore the impact of a sudden and catastrophic illness in Victoria’s husband, Pat, only eighteen months after she died from leukemia. My own experience of these events led to a series of conversations with physician colleagues and patients whose lives, like mine, have been changed by personal loss and the impact of illness.

  I offer specific suggestions for improving the healthcare we deliver to our patients, as well as for dropping the defensive armor we often deploy for self-protection in favor of greater emotional agility. I advocate for earlier and more extensive involvement of palliative care and for reshaping healthcare with compassion as a core value. Within these pages you will also meet two remarkable women, Mary Magrinat and Sally Pagliai, who have grown through their own losses to create a Healing Garden at the Wesley Long Cancer Center, in Greensboro, North Carolina, by restoring an abandoned wetland. This garden is now a refuge that sustains patients and their caregivers, providing their community a green, living place to reflect and find comfort, and linking patients and their families with the natural world.

  Finally, I offer some suggestions for how we can improve the way physicians treat both patients and each other. This is my sister’s lasting gift: Out of loss comes hope.

  CHAPTER ONE

  diagnosis

  It started when Victoria developed a flu-like illness that wouldn’t go away.

  Today marks three weeks and one day since I took up residence at Saint John’s.

  I arrived on Saturday, November 29, 2014. Pat and the boys were at a USC-Notre Dame game and [were] gone for a long time. Pat had offered to stay home because I hadn’t been feeling great for a while, but I encouraged him to go.

  For weeks, perhaps months, it felt like my family had been trading every bug, and perhaps we were. Either my body was fighting off too much at once or my immune system was busy elsewhere, so every bug I encountered became a problem. Not sure. Either way, this had been brewing for some time, and it escalated right before Thanksgiving—a time when it was hard to get results, etc.

  Earlier that week, I was walking to and from the boys’ school, working at Nutrition, and remarked to Anna, the woman operating the cash register to my left, that I wasn’t feeling so well. Anna pointed out that I hadn’t been feeling well at my last shift two weeks earlier. On my walk home, I found myself very out of breath. I wondered if I perhaps had pneumonia. I’d had walking pneumonia as a kid (I remember fighting coughing fits as I performed on stage in Hamlet at Interlochen one summer), and this felt somewhat familiar, minus the cough.

  —DECEMBER 21, 2014

  The afternoon of the USC-Notre Dame game, Victoria went out for a short walk and barely made it home. When Pat returned from the game, they went to the hospital, assuming that she had some kind of stubborn flu virus. She had blood work done and was immediately referred to Dr. Fischer, a hematologist-oncologist at Saint John’s in Santa Monica, California.

  At first, I went to the ER, where they ran lots of tests. Dr. Fischer had called ahead, so I believe he told them what to check. I was admitted, and then I was moved to a bed on the second floor.

  Turns out Dr. Fischer had them run a flow cytometry test, which showed the presence of a large number of blast cells—abnormal ones you don’t want. That’s when I got moved to the fourth floor, the oncology unit. Uh-oh. This feeling was echoed a bit when we told Jody, my neurosurgeon brother, about my current state and he replied that he loved me. That made me nervous.

  —DECEMBER 21, 2014

  The implications of this referral did not initially sink in for her; the fact that disease can transform an active, healthy person into a patient overnight is both disorienting and terrifying, and it would shake Victoria.

  My sister was in the middle of her life, managing her identities as wife, mother, actor, writer, and keeper of the master schedule. She was raising two teenage boys, which meant the family’s days were filled with carpools, soccer practice, piano and drum lessons, homework, and school activities. Victoria often volunteered at the boys’ school, which was within walking distance of their home in Santa Monica.

  She was married to a brilliant and devoted man who had weathered two open-heart surgeries, as well as a difficult retinal surgery, in the earlier years of their union. Pat had started his own venture capital business, and they’d endured the stress of some pretty lean years after their move to LA, until his company became a success. Victoria continued to audition and build a creative life beyond acting, writing a screenplay, and producing an award-winning short film. I was always impressed by how they supported each other despite scares and setbacks—and how Victoria still made space to nurture her friends and their budding careers and would always find time for me when I managed to call her.

  Our father and our two half-sisters, Madeleine and Alex, were coming to Santa Monica for Thanksgiving. Presumably, Victoria had plans and preparations, but she was too sick to handle them that week. Instead, she found herself in the ER, waiting to be seen.

  Her initial blood counts indicated an elevated number of white blood cells with a high percentage of blasts, the immature white cells indicative of a blood-borne cancer. Further testing suggested that she had acute myeloid leukemia, also known as acute myelogenous leukemia.

  There are typically two forms of acute leukemia that affect adults, acute myelogenous leukemia (AML) and acute lymphocytic leukemia (ALL). Both derive their names from the types of white blood cells that are being produced in overabundance. In both cases, the immature white cells do not function properly: they can’t kill invading bacterial and viral infections, and they choke out the bone marrow production of healthy, normal blood cells, such as red cells, which carry oxygen, and platelets, which promote clotting.

  After a repeat blood test confirmed that this was not merely a laboratory error, Victoria had a bone marrow biopsy. This was a “dry tap,” which means that the normal marrow has been replaced with so many leukemic cells that there is no longer room for any others. The fact that her marrow was so full of abnormal cells suggested that the leukemia was advanced. My sister was miserable: the overpopulated cells stretch the nerve endings lining the bones, causing deep, aching pain. White blood cells liberate chemicals called cytokines, which cause fevers, explaining the flu-like illness.

  The bone marrow biopsy was evaluated by a cytopathologist (an expert in cells), who diagnosed Victoria with AML. The next step was to analyze the genetics of the leukemic cells. The pathologist collected a sample of these cells and assessed the DNA to identify the underlying mutation that had caused the leukemia. This, it turns out, is the most important factor in determining the effectiveness of future treatment and overall survival of the disease.

  These tests took more than a week to process. I remember the agonizing wait for results. I had gone from doctor (aware of the waiting time to process tissue samples) to anxious brother—frustrated by the delay, yet powerless to speed up things or even impact her illness. I was distracted and unable to sleep through the night; instead, I would head to my computer, studying graphs and charts and journal articles. If I could learn as much as possible about AML, maybe I could help save my sister.

  In the end, Dr. Fischer told me the results over the phone: monosomy 7. We have two copies of each chromosome in every one of our cells. This particular monosomy means that one copy of Victoria’s chromosome 7 had been dropped during the copying of the DNA of her white blood cells as they replicated themselves. The loss of an entire chromosome is a big deal with huge implications. From the standpoint of AML, this put her in the worst of all groups of patients with the disease, as monosomy 7 carries a dismal prognosis.

  “Promise me you won’t research this mutation and check survival rates on the computer,” Dr. Fischer cautioned. Hanging up, I rushed to my office and Googled the mutation. It was December, close to my sister’s birthday;
I stared at the graphs on my screen, wondering if Victoria would live past her fifty-second year.

  What a day. What a thing. I got my hair shaved. Now I look like a cancer patient, in case it wasn’t clear enough before. But it does feel better. I am no longer shedding everywhere onto everything, with stray hairs plastered to my pillow, robe, bed, face, neck, and body …

  I met with Dr. Siddiqi, who said my induction chemo at Saint John’s was a “failure” and that I am to start round two tonight. Very high doses of cytarabine (a.k.a. Ara-C) every twelve hours for four days. Risks include problems with neurological coordination. Thank God Pat is by my side. He makes me feel lucky—even in the midst of this!

  —DECEMBER 23, 2014

  I am still amazed by how quickly one can access information, even about complicated medical concepts and data. I grew up in the era of Medline searches, which involved poring through shelves of bound references. Now all this information is available digitally, so with a few clicks I was able to pull up a staggering amount of material. And none of it was encouraging.

  The five-year survival of adult patients diagnosed with AML with the monosomy 7 mutation was 6 percent. This means that ninety-four out of 100 patients were dead within five years. The Kaplan-Meier survival curve (a type of graph that drops toward zero as people die of their disease) had the steepest slope toward zero I had ever seen. The reality is that few people even got close to five years. The prognosis could not have been more bleak.

  Yet when I spoke with my sister, she seemed to take this in stride. First, she told me she didn’t want to know any statistics. She didn’t want to know the survival curve. She was going to beat this illness, and what other people went through didn’t matter to her. As we enter the phase of individualized medicine, there is a certain value to this approach. But statistics matter. They inform our decisions and shape our treatment strategies. Insurance often won’t pay for treatment without a rational basis.

  I felt torn between the numbers I knew and Victoria’s desire to be protected from them. She firmly believed that these statistics were not relevant to her and that any deviation from her belief that she would survive somehow diminished the likelihood of success with her therapy, which ranged from the medical approach to alternative approaches like visualization, relaxation therapy, and a focus on nutrition and supplements.

  It was hard for me to manage a balance between the information I had and my sister’s seeming denial. We were both frightened, but we handled our fears very differently. Her entire focus was on survival and conquering her illness. She said she would accept whatever chemotherapy was suggested and obediently follow the arduous regime prescribed by her doctors. Her path was clear, and her eyes were on the prize: a cure. From the beginning, Victoria did not wish to consider her own mortality.

  Early on, it became clear that the only way Victoria might survive was to undergo a bone marrow transplant. She would have to move from Saint John’s, a bright, modern hospital close to home, to City of Hope, a hospital on the opposite side of LA dedicated to critically ill patients, with specialties in leukemia and bone marrow transplants. She would also have to say goodbye to Dr. Fischer and meet a whole team of new doctors. Her husband and teenage boys would face a nearly two-hour commute through LA traffic.

  The initial plan was to administer a conditioning chemotherapy to beat back the leukemia and then proceed to transplantation. Transplant would allow more aggressive conditioning, or pretransplant preparation, including potent chemotherapy followed by whole-body radiation therapy to kill off her bone marrow (ideally, this would include her leukemic cells), followed by repopulating her bone marrow with the cells of a matched donor. Not only would the donor cells be healthy and free of leukemia, but also—because they were not a perfect match with her cells—there would be a graft-versus-host reaction in which the donor cells recognize the leukemic cells as foreign and attack and kill them.

  The problem with graft-versus-host reaction is that the donor cells will also see the body in which they have been placed as foreign and might attack the host’s cells and organs, potentially damaging or killing them. One of the tricks of a transplant is allowing graft-versus-host reaction to occur, but not to such an extent that the donor cells ravage the host. This requires antirejection and immunosuppressant drugs to blunt or suppress the immune response of graft-versus-host after the transplant. There would be endless fine-tuning, titrating, and balancing of chemical cocktails within my sister’s body.

  I began to understand that cancer therapy is a cross between an intricate art form and an elaborate, perplexing chemistry experiment. Each body will have its own unique response, just as each cancer will have its own pernicious character. They will be locked in a battle for survival.

  For the first time, I was acutely aware of the degree of terror that patients and their families experience with difficult diagnoses. Up until this point in my life, I believed I had a good grasp on what families were experiencing and knew how to handle physician-family interactions. Now, instead of being in charge of a case, I was the brother of a patient, one of many. I, too, hung on every word from the doctors and medical team, wishing for good news, fearing the bad. The confidence I had known all my working life was evaporating in the glare of my sister’s diagnosis, replaced by a profound disquiet that threatened to upend my identity as a doctor.

  Victoria always could steal the show. Eighteen months younger than I, she was born with a commanding presence and an innate sense of theatrics. Surveying the scene on her first day of second grade, she announced, with a sweeping gesture of her tiny arm, “Isn’t this grand?”

  Known at home as “the Imp,” my sister delighted in attention and easily inserted herself into the world of towering grown-ups at our parents’ parties, climbing from one lap to another. She could be maddening: often our fights would end with me punching her in her arm, after which she would smirk and then run as fast as she could across the house to our mother, yelling “Jody hit me!” Only when she was within earshot of our mother would she begin to wail. Inevitably, this worked. Mother would drop what she was doing and envelop Victoria, suddenly dry-eyed and smiling from ear to ear, in a protective embrace, chastising me for hurting her “baby.” I resented the con, yet I had to admire Victoria’s skill.

  I also admired her energy and enthusiasm, and gladly followed as she took on adventures I was far too timid to attempt on my own. She would talk back to neighborhood boys far bigger than she, always willing to take on any dare or challenge they tossed her way.

  We lived in Washington, DC, with our parents and our older sister, Caroline, in a rambling house overlooking a wooded ravine. Victoria and I had the run of our leafy, affluent neighborhood—for the most part—free of adult supervision. In a thick bamboo patch, we dug pits and hideouts with some of the older boys on the block. Only years later did I realize that we were acting out Walter Cronkite’s CBS nightly news, recreating firefights and ambushes between the North Vietnamese and US soldiers. Most of the boys were older, and Victoria and I watched, excited yet afraid, as they dug trenches and traps for the other kids to fall into.

  Victoria was fearless in a way that Caroline and I were not. She could also be dramatic, and sometimes it was impossible for a sibling to tell the difference between drama and trouble. I remember the night she was driven to the hospital after our parents found her choking and gasping for air, having somehow put her head through the sleeve hole of her pajamas. At the time, I couldn’t tell if she was truly hurt or whether she was just basking in the attention; I was suspicious of the whole thing. Still, she had little bruises over her eyes and a puffy face for days, so it couldn’t all have been for show.

  Our father had been an attorney on the Warren Commission after clerking for Earl Warren, and we grew up amid dinner-table discussions and speculation about the assassination of President Kennedy. After his time on the Commission, our father returned to his partnership in a DC law firm.

  Our parents frequently entertain
ed with boisterous dinner parties, and after our bedtime, Victoria and I crept to the stairs to spy on the revelers on the floor below as they argued politics and occasionally sang around the piano. One evening we watched, fascinated, as a drunken guest sprawled out on the living room couch, singing loudly. Despite our gymnastic efforts to work our necks over the railing for a better view, we could only see the back of his head. And one time, Tom Lehrer came to our house. Victoria and I stood in rapt attention, as we were big fans of “Vatican Rag” and “New Math.”

  Victoria and I were nine and eleven, respectively, when our family moved to London. We’d expected to stay two years, but just as our sojourn was meant to end, our parents announced that they were getting a divorce and planned to stay on for another year. With the family adrift, my sunny, precocious sister became my only anchor. Caroline was unhappy and wanted to return to the States, so our parents sent her to a boarding school at home. Now fast allies in an uncertain world, Victoria and I remained in London.

  We moved with our mother to a small mews near Kensington High Street and our father relocated to a house of his own in Notting Hill, where we spent occasional weekends. Meals with our father were awkward, full of prolonged silences and disconnected small talk, and the food was often appallingly bad: clumped spaghetti with canned tomato sauce; overcooked broiled spareribs; Chinese takeout. Sometimes we walked sullenly together down the street to Giles for fish and chips. It was reassuring to have Victoria with me for the obligatory family moments we endured. At each visit, we surreptitiously inspected the bathroom, looking for evidence of new “visitors.” Our mother dated some as well, and we were merciless in our imitations of her boyfriends, including one who had a wandering eye—Victoria, with practice, was able to make her eye do the same thing.