Chapter 1: The Most Universal Truth When he shall die,
Take him and cut him out in little stars, And he will make the face of heaven so fine
That all the world will be in love with night
And pay no worship to the garish sun. - William Shakespeare, Romeo and Juliet Every man’s life ends the same way. It is only the details of how he lived and how he died
that distinguish one man from another. - Ernest Hemingway There is no more universal truth in life than death. - Haider Warraich
In Being Mortal, Atul Gawande argues that medicine falls short of meeting the needs of the dying. He writes from the vantage point of a Harvard-educated surgeon and professor, and admits, “I am in a profession that has succeeded because of its ability to fix. If your problem is fixable, we know just what to do. But if it’s not? The fact that we have no adequate answers to this question is troubling and has caused
callousness, inhumanity, and extraordinary suffering” (9). Despite the inexorability of death, we fumble around the topic. We cannot evade death; it is the endpoint of human existence. Our difficulty talking about death precludes us from having crucial
conversations about what we will need emotionally, relationally, and medically when that time comes. These conversations, as difficult as they might be, ultimately would provide a deeper understanding of patient priorities—and thus bring us one step closer to honoring them.
We talk about what it means to live well, but what does it mean to die well? Gawande writes, “[Doctors] think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive” (259). Because death is the enemy of biomedicine, we don’t have a sense of what constitutes a good death; the phrase “good death” in and of itself sounds paradoxical. And yet, although we don’t want our lives to end, we do want them to end on our own terms, which ultimately requires preservation of those things—the abilities, activities, interests—that render life meaningful for us as individuals.
unable to come to terms with death, taken together with the general prominence of cancer is where this project begins. Analyzing biomedical, cultural, and personal cancer narratives becomes a lens through which we can approach our culture’s problems dealing with death in general. Because cancer is conflated with death, we can use cancer narratives as a means to diagnose problems in modern discourses about death, see where those problems arise, and see where productive alternatives may emerge. To Gawande’s point, terminally ill cancer patients do face those problems that doctors can’t fix, the diagnoses that medicine falls short of curing. They face the consequences of the inadequacy of medicine, but ultimately suffer most from our society’s inability to face death.
Whereas Gawande argues that within the biomedical realm, we—doctors, patients, and their loved ones—don’t have the right tools for talking about death, I argue that we also lack these same tools in our larger culture, as evident in popular representations of terminal illness, and cancer in particular. Susan Sontag’s 1978 Illness as a Metaphor explored this same idea, that popular representations of and metaphors involving cancer are symptomatic of broader cultural trends. Her essay argues that the way we make cancer a metaphor is symptomatic of larger social pathologies:
advanced society and for our justified fears of the increasingly violent course of history. (Sontag 87)
Sontag goes on to claim, however, that this symbolism is significant not only because of what it diagnoses about our culture but also because of its effect on actual cancer patients. How we talk, write, and think about cancer—which by its medical definition merely means “an uncontrolled proliferation of cells”—informs how patients experience it (OED).
Sontag and Gawande converge at a crucial point: we don’t know how to talk about death. Because we are unable to come to terms with death, our culture has developed methods to evade it. Terminal cancer narratives—the cultural, biomedical, and personal accounts of cancer patients—are emblematic of this problem. Cultural, biomedical, and even many personal accounts of cancer are predicated on happy endings, on finding meaning in suffering. Cultural representations in particular go so far as to rely on miraculous cures of misdiagnoses to dodge the topic—a literal form of evasion. Beyond literally evading death, however, we also force existential, life-affirming meanings onto the experience of terminal cancer in order to transcend both its
endings offer a method of avoiding death by positing that some greater force overcomes or beats it, placing an emphasis on the living rather than the dying.
An important caveat: such narratives are not inherently wrong. In fact, they can serve as an important vehicle through which patients can process and understand their own experiences. In imputing happy endings and positive truths to all cases of terminal cancer, however, these narratives begin to exclude those patients whose experiences don’t align with such models. These narratives become the exclusive narratives of what death should look like. The stories that are intended to encompass a broad range of patients end up encompassing only a select few. Considering this in the context of Sontag and Gawande’s claims about terminal cancer literature, a serious problem comes to the surface: these narratives don’t fully represent the variety of ways people
experience the illness. This is a critically important issue because literature is much more than just idle fiction—it ultimately informs how people experience their disease.
Consequently, these stories place a burden on the patient to follow a certain template. From this discourse, a paradigm of what constitutes a good or bad patient emerges, where a “good patient” minimizes the pain and suffering for those around them by sticking to the “happy ending” script, and a “bad patient” never makes it to the happy ending, or never discovers the meaning in their suffering. By thrusting this burden on cancer patients, we ask the cancer patients themselves to serve those around them, when the roles really should be reversed.
grandiose acts of valor, actively fight their disease and win a moral battle despite their physical death. Second, a “truth narrative,” in which the patient experiences some kind of spiritual or existential revelation that provides them with a sense of solace.
Taking a closer look at patient narratives, it becomes clear that patients, too, find their language embroiled in the battle metaphor, highlighting just how knotted,
contradictory, and complicated, the emotions associated with death can be—as are the ways we talk about them. In 2014, highly acclaimed ESPN reporter Stuart Scott was honored with the Jimmy V Perseverance Award at the ESPYs, and his acceptance speech illuminated the convoluted nature of experiencing and talking about a personal
In response to Scott’s poignant speech, Eliza Berman published an article that explored the complexity and the stakes of the battle metaphor:
But saddling people with cancer with Herculean expectations fails to
acknowledge that it is absolutely normal to feel afraid, to feel like you can’t go on, to actually want to give up. And sometimes making this choice—if it can even be called that—is an OK thing to do, a human response to an inhumane
situation. The myth of the cancer warrior…treats fear as failure and forces those who are afraid into the shadows. (Berman)
Berman identifies the implications of associating cancer with victory—it puts pressure on patients to conform to this notion that renders fear (and dying) commensurate with losing and bravery commensurate with being a “good patient.” Again, there is nothing inherently evil with the fact that people want their loved ones to “fight” cancer, to survive. Gawande reminds us that such is human nature. What’s wrong is that, in seeking this assurance, we thrust an onerous responsibility on cancer patient themselves to be brave and to fight when they might not want to.
This project has three sections: biomedical, cultural, and personal. The initial chapter begins in the medical realm, where Gawande has first drawn our attention; I will consider the medical consequences of the tendency to prolong death without
considering patient priorities. Then I will turn to cultural representations of cancer and examine how they illustrate these tendencies Gawande has identified within
biomedicine. Finally, I will study three patient accounts—Stuart Scott’s, Paul Kalanithi’s, and Oliver Sacks’—to understand how patients themselves both rely on the dominant scripts and criticize them. The purpose of understanding how patient accounts relate to these scripts is to recognize both how pervasive they are and to develop alternative narratives through which we can discuss death. Therein lies the essence of this project: there is not a single, one-size-fits-all method for describing experiences with cancer. When we write about terminal cancer, the emphasis, then, should be placed on
Chapter 2: Not One Disease but Many
“What had not changed, though, was the heroic spirit of responsibility amid blood and failure. This struck me as the true image of the doctor.”- Paul Kalanithi
Because of the exchange of ideas between the biomedical and cultural realms— and its indubitable impact on the patient experience—this analysis begins with the biomedical perspective. To fully understand the callousness that stems from the inadequacies of biomedicine’s current approach to end of life care, we must start by understanding its direct impact on patients. In What Dying People Want, palliative care physician Dr. David Kuhl interviews patients to understand how they characterize their own experiences with terminal illness. One patient, Frieda, describes her experience in this way:
I can’t do anything. I can’t get interested in anything. I can’t travel; I can’t go anywhere. I used to enjoy movies and bingo and things. I’ve lost all enjoyment in them. So it’s just a matter of living from day to day, waiting to die. And that’s no good…Especially when I’m just living to live, that’s what I’m doing. (25)
What Frieda refers to as “living just to live” is the very essence of the quality of life—or lack thereof—that emerges from our current lack of focus on patient priorities. Though we instinctively think that the purpose of a physician is to cure patients, terminal illness presents the physician with a quandary. What can be done when there is no cure?
“Anyone’s life can be prolonged now. Machines breathe for patients. Machines oxygenate patients’ blood. Machines pump blood into the circulatory system. All this occurs regularly in the intensive care unit. But if physicians put patients on these machines indefinitely solely to keep blood flowing through arteries regardless of the patient’s condition, the mere preservation of life, and by extension the job of medicine, is meaningless” (Rothstein). Rothstein identifies the tendency to use our existing tools as a means of extending life rather than endeavoring to preserve its quality. This is where the “art” of practicing medicine comes into play. Referencing Leon Kass’ article, “On the End of Medicine and the Pursuit of Health,” Rothstein further explains that, “health consists of a proper balance of parts that make up the whole and the workings of the whole human being.” In essence, the purpose of the doctor is to enable the well-being of the patient’s whole self, rather than merely his physical existence. There is a difference between treating a disease in isolation and caring for a patient as being more than his or her disease. The artfulness and skill of end of life care, then, becomes less about time—the prolonging of life—and more about wholeness and what can be done with that time.
perception of time irrevocably changes upon diagnosis. Dr. Kuhl uses the ancient Greek conception of time to explain the point: “Chronus is linear time. But there is also
personal time, psychological time, the experience of life—this is kairos, noted for its dimension of depth” (4). While a Kaplan-Meier Curve can illustrate a patient’s likely remaining “linear time,” it cannot illustrate the kairos—the depth, the dimension, the experience of that time. This example captures the effect of attempting to thrust a one-dimensional model on a multi-faceted concept. Though time is ostensibly a tool we use to measure the length of a day, week, year, or life, Kuhl reminds us that it actually is much more than that. Time is at the center of the questions we are forced to face at the end of life: How much longer am I expected to live? What do I want to do with that time? Is the length of my life more important, or its depth?
Gawande, like Kuhl, addresses how convoluted the concept of time can be: “When our time is limited and we are uncertain about how best to serve our priorities, we are forced to deal with the fact that both the experiencing self and the remembering self matter. We do not want to endure long pain and short pleasure. Yet certain
concept of time to a pedagogical chart, takes for granted that terminal cancer patients will have different needs in regard to the time they have left in their lives.
Chapter 3: Death Be Not Proud Death, be not proud, though some have called thee
Mighty and dreadful, for thou art not so; For those whom thou think'st thou dost overthrow
Die not, poor Death, nor yet canst thou kill me. From rest and sleep, which but thy pictures be, Much pleasure; then from thee much more must flow,
And soonest our best men with thee do go, Rest of their bones, and soul's delivery.
Thou art slave to fate, chance, kings, and desperate men, And dost with poison, war, and sickness dwell, And poppy or charms can make us sleep as well And better than thy stroke; why swell'st thou then?
One short sleep past, we wake eternally
discourses—the tidy boxes—are the two models previously described: the happy ending and truth models.
Side Effects May Vary, Julie Murphy
The most straightforward and salient example of the way in which cancer narratives evade death is the story in which the terminal cancer patient, given months, weeks, or days to live, miraculously goes into remission. Contemporary films such as 50/50 and Last Holiday have popularized this trope, and literature, too, contains similar patterns. One example of this is Side Effects May Vary by Julie Murphy. The novel is the story of a sixteen-year old girl named Alice, suffering from leukemia. On page sixteen of the novel, Alice finds out that she is in remission. The way in which her mortality is removed from the narrative progression is evasion of death in its purest form. In fact, it is life that she struggles with the most, as she avenged many wrongs and made many enemies along the way—she publicly humiliates her ex-boyfriend to punish him for his infidelity and her ballet rival for her disloyalty. The story contains revenge, first love, and family drama, distracting us from the protagonist’s terminal cancer.
Despite the novel’s focus on what Alice does with what she believes to be her final months, the cultural imagination renders this a “cancer narrative.” The School Library Journal characterizes it as a “compelling story of one teen’s struggle with cancer, love, and living,” and writer Jennifer Echols calls it a story of a “strong-willed heroine who finds facing death simple, but facing life heart-wrenchingly complicated”
ultimately dodges grappling with what it means to face terminal cancer. Second, the novel emphasizes Alice’s struggle in her life as opposed to her struggle with her
mortality. In doing so, the purported terminal cancer narrative becomes a story of high school romance, familial relationships, and ultimately of what it means to be a good person rather than of the actuality of her experience with cancer.
Alice and her longtime friend Harvey have spent many days together
accomplishing Alice’s tasks of revenge on her bucket list. Harvey is in love with Alice, but Alice refuses to acknowledge her love for him. However, at the end of the novel, Alice writes a note to Harvey: “Harvey, this is my gift to you. And who knows, maybe it’s not anything you want. But before you let your eyes skip forward, read this: my weird-shaped-doesn’t-fit-into-a-box-sometimes-angry heart loves you, and whatever comes next I want to be there. On whatever terms you decide” (328). This ending is palatable and entertaining, yet ultimately dodges dealing with the actuality of Alice’s terminal cancer. In fact, it falls perfectly into the truth model: Alice plots a devious revenge, deeply hurts the boy who loves her, and causes a maelstrom within her family, but ultimately learns from her mistakes and resolves to be a better person. The novel’s superficial treatment of the cancer narrative makes the terminal diagnosis only a plot point in a larger story about life.
The Fault in Our Stars, John Green
opportunity to teach a lesson about life. The novel avoids focusing on the patient and honoring the particularities of her own personal experience with her cancer; it is aware of both the “genre” of cancer narratives and its shortcomings but nevertheless
perpetuates them in a different way.
In this particular narrative, Hazel Grace Lancaster has been diagnosed with terminal thyroid cancer, and appeases her mom by attending a support group regularly —despite her own personal resistance to the idea. At the support group, in a twist of fate, Hazel meets Augustus Waters, and the two patients fall in love. In the end, Gus is re-diagnosed with osteosarcoma and dies—leaving Hazel devastated but nonetheless thankful for having had the experience of loving him.
thereby challenging the conventional heroic narrative, where he had to be a courageous, “indomitable eagle.”
Early in the novel, however, both Gus and Hazel rely on this fight metaphor and heroism paradigm. In fact, it is Gus’ investment in the conventional heroic narrative, and his not wanting to seem “pitiful” as a result, that renders his death more painful than it needs to be. When Gus is re-diagnosed with osteosarcoma, he calls the cancer his “hamartia”—his fatal flaw. By referring to cancer as his own personal flaw, Gus shows how talking about cancer in this way can cause a patient to conflate his disease with his character. Cancer, then, becomes not a terminal illness but a defining feature of his character, forcing a burden upon him to atone for a disease that he did nothing to cause. When Hazel encourages Gus to “fight,” he says: “What am I at war with? My cancer. And what is my cancer? My cancer is me. They’re made of me as surely as my brain and my heart are made of me. It is a civil-war, Hazel Grace, with a predetermined winner.” (395) Gus’s social, cultural, and personal experiences have led him to perceive his cancer as his own personal pitfall—it is as purely “him” as the other parts of his body. However, Gus’ “civil war” metaphor can also be understood in a different way. By implying that his cancer is in fact an indelible part of himself, and not an external
In addition to its reliance on the fight metaphor, many of the novel’s elements feed into the “truth model” that emerges in other texts. The crucial overlap between this text and others is that discovering this truth ascribes a deeper meaning to the experience of terminal cancer and ultimately death, thereby allowing Hazel to transcend its throes. By giving her the experience of love through which she can experience the world in a new way, and giving her love that ultimately teaches her about life, the novel dodges undertaking the very issue that initially appears to be at its center: Hazel’s own mortality. In fact, at the end of the novel, Hazel, who has terminal thyroid cancer, survives Augustus, who has osteosarcoma, a highly treatable form. Because the novel doesn’t entertain the mortality that we expect, it then uses the death that does occur in the story shifts the focus from the experience of mortality itself to the experience of living.
has on patients, Hazel’s difficulty in finding an alternative way of talking to Gus emphasizes our cultural reliance on these same terms.
Despite the novel’s explication and debunking of the conventions surrounding cancer, a macro-level exploration of the novel’s premise shows just how difficult it is to fully refrain from imputing a happy ending on this kind of narrative. For Hazel and Gus, cancer becomes the bridge between two young hearts; it is the fact that both Hazel and Gus have or had the disease that not only leads them together, but makes their difficult experiences more palatable. In many ways, this is the beginning of the happy ending for Hazel. Even though Gus dies, meeting him leads to love, a relationship that brings a particular joy and normalcy in Hazel’s life that had been unfathomable to her since her diagnosis when she was thirteen. Although this is a positive for Hazel and the story’s crucial development, it renders cancer into only a causal mechanism in a love story, which converts Gus’s death into a broader, romantic narrative about the meaning of life. Simply put: cancer becomes a prop by which the novel can tell a life-affirming story.
is unavoidable, but that the time they did share together gave her much to be thankful for. This is Hazel’s personal iteration of the truth model; it is her way of finding meaning amidst death.
My Sister’s Keeper, Jodi Picoult
opportunities for readers to ultimately evade acknowledging and grappling with Kate’s death head on, thereby perpetuating the vicious cycle.
Interestingly, Picoult poured her own experience with her son’s illness into Sara Fitzgerald’s character. Picoult’s son, Jake, was diagnosed with bilateral cholesteatomas in his ears; he had ten surgeries to prevent tumors in his ears spreading to his brain. About her son’s illness, Picoult said: “I’d think, ‘Okay, just take my ear; if that keeps him from going through this again’” (1308). This feeling, she said—a parent’s willingness to sacrifice everything to protect a child—became the anchor of Sara’s voice in the novel. Picoult uses her son’s experience to meditate on the struggle of loving someone with cancer. How can one reconcile wanting to extend a terminally-ill person’s life with hearing what that person actually wants? However, like The Fault in Our Stars, the novel acknowledges the problematic nature of the fight narrative, of resisting death at all costs. The novel fixates on Kate’s mother in order to address this tension. In an
interview, Picoult admitted that, “Sara’s going to generate a bit of controversy…she’s so busy fixating on Kate’s shaky future that she loses sight of her family in the here and now” (1308). The novel presents Sara as so loving of her daughter, that the love itself becomes counterproductive, thereby at once sympathizing with the maternal instinct to love and illuminating the problems that arise when that manifests as a resistance to death regardless of the patient’s desires.
sociocultural imagination that death in itself is inconceivable—all the more so for a young child. Viscerally, we understand a parent having to bury her two-year-old daughter as an unacceptable interruption to a life just begun. Sara resists the idea that her daughter is facing mortality at such a young age by pursuing every treatment possible and seizing every opportunity to extend her life.
costs overshadows—and even prevents Sara from—helping Kate live the fullest life that she can with the time that she has.
These moments illustrate why Kate can’t tell her mom that she no longer wanted to be treated. During the trial, Anna reveals that she isn’t pursuing medical
emancipation for her own purpose; rather, her sister no longer wants to live with her cancer but couldn’t bring herself to tell her mother: “She couldn’t tell you…She was too afraid if she killed herself she’d be killing you, too…I don’t want her to die, but I know she doesn’t want to live like this…” (1101). Later in the story, Sara acknowledges that she places her desires over her daughter’s: “I know I jump at every sliver of possibility that might cure Kate, but it’s all I know how to do. And even if Kate doesn’t agree with me, I want to be the one who says I told you so” (1135). This “I told you so” mentality implies that this situation is right-or-wrong, black-or- white. This is significant on two levels. First, automatically pursuing any and all attempts at saving her daughter
precludes Sara from understanding her daughter’s desires regarding her life and death. Second, Sara’s ideal outcome, her “I told you so” is that her daughter is miraculously cured; implying that death can be overcome.
As much as the novel is able to highlight the issues with the fight narrative—the issues with wanting to be able to say I told you so—it is also able to provide glimmers of a more empathetic approach to death. Simply put: the novel creates Sara as a
opines that it is time to take Kate home, to make her comfortable, he says, “I think she’d want to die in her own bed” (773). Brian’s acknowledgment of their daughter’s wishes offers a glimpse of a more patient-centric paradigm of mortality.
However, despite this moment of focusing on the patient, the novel as a whole allows the readers themselves to distract themselves from Kate’s death—to not really hear the patient. Despite criticizing Sara for being unable to face Kate’s death, the novel, too, ultimately evades it. This story is not one but many; in My Sister’s Keeper, many narratives unfold, including Anna’s battle for medical emancipation, Anna’s attorney’s romantic relationship, and Brian and Sara’s strained marriage. By structuring the novel in this way, Picoult allows reader to skirt around Kate’s mortality—she is no longer the protagonist of the story, her cancer no longer the focus. The death in the story becomes an engine for the plot rather than something that is considered at length in its own right. Rather than acknowledge that Kate is facing her own mortality, and consequently has complex needs, fears, and desires, readers can divert their attention onto a
Paradoxically, the novel’s evasion of morality culminates in Anna’s death. Crucially, the death at the end of the story is not Kate’s, the cancer patient, but her sister’s. At the end of the story, after the judge rules that Anna will be medically emancipated from her parents, and her lawyer will have her power of attorney, Anna dies in a car accident. Because she is an organ donor, her kidneys are donated for Kate’s kidney transplant, and Kate survives. By ending the novel with a tragic, unusual, death— a death which serves life—the novel evades the actuality of facing terminal cancer. Anna becomes a martyr, Kate a survivor. In not dealing with the actuality of terminal illness, Sara’s ideal outcome is realized—Kate lives. This story reminds us that death can be evaded not only physically but also by ascribing transcendental meaning to it. Wit, Margaret Edson
Margaret Edson’s Pulitzer Prize-winning play Wit is another nuanced iteration of the truth narrative. Here, the death we expect to occur does in fact occur—there is no blatant evasion of mortality. However, the terms of the death in the play highlight our cultural need to derive some kind of meaning from death.
The play begins by examining the disparity of knowledge between doctors and patients, and the communication issues that emerge as a result. When Dr. Bearing reflects on how her doctors will portray her case in the journal article they will
“inevitably” write, she says: “The article won’t be about me. It will be about my ovaries, it will be about my peritoneal cavity, which despite their best intentions is now crawling with cancer. What we have come to think of as me is in fact just a specimen jar, just the dust jacket, just the white piece of paper that bears the little black marks” (140). In this monologue, Dr. Bearing critically comments on how her doctors treat her as a case of cancer rather than a person. This is the play’s version of addressing a problem in biomedical approaches to terminal illness.
situation completely and that she is able to communicate her desires serves as a reminder of what it means to focus on the patient’s needs, and to see to it that those needs are attended to. The way in which Dr. Bearing’s nurse engages with her is one part of the solution to the biomedical problem Dr. Bearing addresses.
However, the play’s solution to the cultural version of this problem, however, is itself problematic. Dr. Bearing narrates the story of her own cancer, while also providing flashbacks to her life as a scholar and a professor. By serving as the narrator of her own life and death, Dr. Bearing removes herself from the experience of dying. She shape-shifts from patient to narrator and back to patient as a means of eluding the throes of her own mortality. This structure feeds into the play’s overall exploration of compassion in that it provides a lens through which Dr. Bearing can reexamine those moments in life when she didn’t show as much kindness as she should have to a student or anyone else around her. In addition, she is able to use those moments where she faltered as learning mechanisms, rendering her death an existential epiphany—because of her death, she better understands how she should live her life and how she should treat people. This is problematic because the play doesn’t treat death as death per se, but rather as a means to a positive end. This characterization might match some patients’ experiences, but not all experience death in this way. When we require a positive end such as this, those patients, the ones who don’t have a positive lesson or an epiphany emerge from their imminent deaths, are left by the wayside.
the senior scholar in her pathetic state of simpering victim wishes the doctor would take more interest in personal contact. Now we shall see how the senior scholar ruthlessly denied her simpering students the type of human contact she now seeks” (153). This tees up an exploration of the ways in which she treated her students in a less than compassionate way. One example of this comes from her tenure as a professor: a student requested an extension on an essay because his grandmother died. Assuming that his story was merely another excuse, Dr. Bearing dismissed his request and made him honor the original deadline. In the moment, she showed no remorse for how she treated the student. Retrospectively, while facing her mortality, Dr. Bearing is able to realize that she should have been more empathetic and compassionate. Through her death, Dr. Bearing derives an existential lesson about how to best live. This is one piece of her truth, her happy ending—she has this moral epiphany revealing how she could be a better person.
The play’s focus on the transcendence of death and humanity culminates at the end of the play, when Dr. Bearing dies. Dr. Bearing says: “We are discussing my life and my death. And I can’t conceive of any other tone. Now is not the time for verbal
swordplay. Nothing could be worse than scholarly analysis. Now is the time for simplicity. Now is the time for, dare I say it, kindness” (178-179). Herein lies Dr.
Bunny. This act of love and compassion solidifies the lesson that, paradoxically, was brought to life through Dr. Bearing’s death.
The play uses one of John Donne’s sonnets in particular, “Death Be Not Proud”, as an anchor for telling Dr. Bearing’s story. She wrote an extensive analysis on this poem as a scholar, and taught the same poem to her students as a professor. When she is working with Dr. Ashford on her analysis, Ashford says: “Nothing but a breath—a comma—separates life from life everlasting. Very simple really. With the original punctuation restored, death is no longer something to act out on a stage with
exclamation marks. It is a comma, a pause. This way—the uncompromising way—one learns something from the poem, don’t you think?” (45) The connection her professor makes with death and “learning something” goes hand in hand with the truth narrative. We are able to glean something from death; from the poem, we learn that death is a transition or a pause, which allows Dr. Bearing to derive an existential lesson from her own mortality. The way that the poem reduces death to being merely a pause, and the way that the play returns to the poem as a point of reference reveals the way in which Dr. Bearing’s is an existential struggle, a way to find meaning and solace in her death. In fact, the focus of the entire poem is the transcendence of death through everlasting life; the way in which the play hinges on this poem shows how it, too, is about the
transcendence of death. A Monster Calls, Patrick Ness
adopting a patient-centered approach. Patrick Ness’s young adult novel, A Monster Calls, falls into that category. A Monster Calls is the story of a young boy, Conor, whose mother has a terminal illness. A monster visits him every night and tells him three stories, all of which are allegories that help Connor navigate his thoughts and emotions surrounding his mother’s mortality. In so doing, A Monster Calls evokes imagery that makes Conor the primary actor and Conor’s acceptance of his mother’s death the primary story, all while associating death with negative imagery.
The story explicitly grapples with Conor’s “truth” and in doing so ostensibly becomes a simple example of the truth paradigm. However, in this case the truth is Conor’s, not this mother’s. In its entirety, the novel is about Conor’s visceral reactions to his mother’s illness rather than her experience with her illness. Conor is primary, his mother’s story secondary. While the novel is able to focus on acceptance, the
acceptance at the center of the novel is on Conor’s terms rather than his mother’s. The monster itself is Conor’s unconscious, allowing him to work through the complexities of his situation, to speak his truth, and to ultimately let go.
hearted? How can invisible men make themselves more lonely by being seen?”(212) By showing Conor that a feeling and its opposite can be felt simultaneously, the monster teaches him about the intricacies of the relationship between human emotion, thought, and action. By emphasizing just how complicated and paradoxical situations of life and death can be, the monster teaches Conor a valuable lesson in acceptance—acceptance of his mother’s ailment, acceptance of her mortality, and ultimately Conor’s acceptance of his own reaction to it. While acceptance of mortality is a crucial step toward making the end of a patient’s life more about the patient, it is not the only step. This is an archetype of the “truth model” because Conor, in speaking his own personal truth about his thoughts of his mother’s mortality, reveals an important truth about how to relate to complicated emotions and how to be a good person.
Interestingly, the specific imagery used to offer the idea of “letting go” comes from a nightmare Conor had, in which a different monster takes his mother away and pulls her into a dark abyss. Conor himself resists the monster’s grasp, but the monster’s strength and the weight of his mother are too much to resist; he lets her go, and she falls. When the monster and Conor discuss the stories, and what they mean in the context of Conor’s situation, the monster says:
write it with actions. What you think is not important. It is only important what you do. (212-213)
According to the monster, the part of Conor that allowed him to let his mother go is the bad witch, and the monster promises him that he can become the good witch through his actions. In doing so, he aligns Conor’s desire to let his mother go with the bad evil option. This very notion sets up the idea that desiring or accepting someone’s death is necessarily morally reprehensible. The novel reinforces the cultural logic of evading death by both conflating desiring someone’s death and accepting it and by only discussing death in the context of being a bad, morally vexed thing to think about.
Chapter 4: Being What You Are
Though the cultural script ostensibly attends to a plurality of perspectives, it actually is dominated by two discourses: happy endings and truth. Personal accounts of terminal cancer patients diverge from this common cultural nucleus to varying degrees. Sometimes, the happy ending and truth narratives are helpful. They offer patients templates that can bring meaning to their experiences through hearing about others’, while also removing patients’ sense of isolation—the isolation that is potentially fueled by our culture’s general inability to talk about death and dying. In fact, this entire
project centers around the fact that neither culture nor patients are inherently wrong in the way they characterize and discuss topics of terminal illness: the point is that the two existing discourses are too limited to accommodate the plurality of patient experiences.
So why does this matter? In the end, in the midst of these paradigms, cultural scripts, and models of what constitutes a good death, there are some patients whose stories don’t get told—and, thus, some people who might feel like they aren’t dying the right way. Returning to Gawande’s thesis: there is no right way to die, so it is paramount that we discuss patients’ priorities with them. The better equipped we are to capture a broad range of experiences and to really listen to patients, the better equipped we are as a society to deal with death. To reiterate: I am in no position to characterize patients’ experiences as good or bad. However, as a society it is absolutely critical that we learn to cater to the nuances of patients’ stories, experiences, and needs.
competing; a pregnant woman can anticipate the pain that precedes the birth of her baby with the anticipating that it will end with a baby in her arms; the patient welcomes the surgical removal of an inflamed appendix that has declared its presence with
excruciating and nauseating pain, the teenager with a broken arm knows that once the bone is set healing will eventually subside and disappear. Though some people
experience a terminal illness without physical pain, it is for many, part of living with such an illness” (74). Kuhl’s point here is that the desire to make pain meaningful is a basic human tendency. Perhaps this explains our tendency to impute happy endings to death, to require that some existential truth is born out of it. It’s not wrong to make death meaningful; such a narrative matches some patients’ experiences or brings them a sense of hope, peace, and well-being. What is wrong, however, is to limit how individual patients can find meaning—or no meaning at all—in dying.
The relationship between the dominant cultural cancer narratives and what patients have to say about their personal experience with the disease is complex. And that’s the point. Whereas the cultural narratives rely on two dominant discourses, some patients find these discourses restrictive but, due to the pervasiveness of these
discourses, patients themselves don’t even have the language to express alternatives that fully escape from them. In the same way that the novels I have discussed
simultaneously identify and perpetuate a problem, so to do these patient accounts hinge upon the very conceptualizations of terminal illness they renounce.
Stuart Scott’s account of his experience with cancer is unique in that he initially clings to—even directly advocates for—the battle narrative but gradually departs from it. In his memoir, Every Day I Fight, he unpacks how difficult it is to talk about death; as the title illustrates, some portions of the book endorse the battle narrative, whereas others renounce it. Through this progressive realization, Scott honors the inadequacy of a “one size fits all” approach to this conversation.
As I discussed in my introduction, the premise of Scott’s book revolves around the battle metaphor. He refers to his daughters as his reason to “fight,” and he uses adversarial language to describe cancer and his treatment. Scott writes: “If I wasn’t doing P90X, I was over at Plus One Defense doing mixed martial arts. I’d pop in the mouthpiece that I’d inscribed with Taelor’s and Sydni’s initials, put on my goggles…and slide on my headgear. I’d walk to the center of the gray and blue padded floor, defiant. You thought you had me down, cancer…but here I am” (210). Scott pursues intense, violent, martial physical exercise as a means of embodying his medical defeat of his cancer. In this particular passage, he personifies it and speaks directly to it as his enemy. Scott viewed his cancer as something to be fought, conquered, and overcome—
language that follows the script of the battle narrative that is so pervasive throughout our culture.
these simplistic ways we talk about it. As I listened to the stories of my fellow cancer fighters at the infusion center, to their tales about how cancer hides and jukes and feints you, how it can lull you into a false sense of security, I realized that how we think and talk about cancer is part of the problem” (192). By acknowledging that he was socialized around a win-or-lose mentality and then recognizing that such a narrative doesn’t match everyone’s experience, Scott recognizes the power of discourse. By taxonomizing a cancer experience in this way, we imply that the prognosis is up to the patient. We imply that the patient work harder, worry less, be a better patient and “beat” cancer—therein lies the “false sense of security.” After all, in the case of a terminal diagnosis, what is a battle that you are surely going to lose?
However, in suggesting that cancer is a conscious enemy (“cancer hides and jukes and feints”), Scott’s language nonetheless remains entangled in the battle
metaphor. He calls his fellow patients “fellow cancer fighters” and refers to cancer as an elusive enemy. In addition, he suggests that patients can learn not to be lulled into the false sense of security he describes, thereby implying that “victory” over cancer is still the goal. His reliance on this language illustrates just how difficult it is to think and speak outside of these dominant models.
able to come to see him. Not long after, Johnathon came into Scott’s room, brought him food, and spent time with him. Scott calls this a “perfect moment,” and reflects on the impact that moment had on him: “Look, not everyone can be as intuitive as Sage and Johnathon. I get that. I know people don’t know what to say, so they just talk to fill the awkward silence and stuff comes out. They don’t mean to say the wrong thing. But listen, y’all: You don’t have to say anything at all. Just wrap your arms around me and squeeze. A hug speaks volumes” (175). This moment in his story captures the essence of what it means to take a patient centered approach. It is so simple: we just need to listen. Scott provides a template; he shows us that there is not a one-size-fits-all
approach, while also sharing the approach that best matches his, and many other cancer patients’, experiences. Scott orients us back to the true north of this conversation: the patients themselves. Some patients want the hugs and the kind of care that Scott describes, whereas others need something different. What patient care looks like can only be determined on an individual basis. Though Scott’s emphasis on empathy and compassion ostensibly echoes the lesson that Dr. Bearing learns in Wit, these two concepts are distinct. Wit’s model of compassion is one where the patient must learn a lesson, but Scott’s model is about teaching people how to interact with terminal
patients in more productive and patient-centered ways. When Breath Becomes Air, Paul Kalanithi
memoir, When Breath Becomes Air, narrates that same path: from fighting death to accepting it. Kalanithi’s story is unique, however, because of the way in which he and his wife conceptualize and talk about his illness as an opportunity to face death with
integrity. Kalanithi’s impetus for choosing neurosurgery as his medical specialty reveals the foundation of the stoic model of facing death he adopts: “I was compelled by neurosurgery, with its unforgiving call to perfection; like the ancient Greek concept arête, I thought, virtue required moral, emotional, mental, and physical excellence. Neurosurgery seemed to present the most challenging and direct confrontation with meaning, identity, and death” (148). Studying philosophy and literature extensively, and wrestling constantly with the what it means to live and die, Kalanithi used his medical profession as a means of exploring the relationships among “meaning, identity, and death”; as a result, he characterized his own experience with terminal cancer in the terms of moral, emotional, mental, and physical virtue he was so captivated by as a medical school student.
Kalanithi had the unique perspective of a doctor-turned-patient. As a
neurosurgery resident at Stanford, Kalanithi knew both death and medicine intimately, but his diagnosis with lung cancer changed their meaning dramatically. Like Gawande, Kalanithi pondered and struggled with the connection between biomedicine and death, from the vantage point of a doctor. Unlike Gawande, Kalanithi wrestled with this issue when his own personal diagnosis and person were at stake. Kalanithi articulates what drives doctors to fight death: “We had assumed an onerous yoke, a mortal
wins. Even if you are perfect, the world isn’t. The secret is to know that the deck is stacked, that you will lose, that your hands or judgment will slip, and yet still struggle to win for your patients” (223). Paradoxically, this passage both accepts and laments the inevitability of death. Kalanithi states that in a perfect world, there would be no death, but we live in an imperfect world—implying that death only comes from imperfections, accidents, or mistakes. Although Kalanithi accepts at face value that death is universal, he renders some kind of failure a prerequisite or causal factor in death. Nonetheless, he describes his unrelenting pursuit of perfection for his patients, which is an example of his stoic approach to death.
When Paul and Lucy decide whether or not to try to have a child before Paul dies, Lucy asks, “Don’t you think saying goodbye to your child will make your death more painful?” To which Paul replies, “Wouldn’t it be great if it did?” Paul continues, “Lucy and I both felt that life wasn’t about avoiding suffering” (268). This decision-making approach embodies his stoic approach to death. Kalanithi leans into life’s
inherent suffering and the suffering that will indubitably entail from having a child at the end of his life. And, indeed, Cady, Kalanithi’s daughter, does enrich the time he has left. He writes to her: “You filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing” (366). This joy has nothing to do with beating or overcoming an illness, nothing to do with transcending death; instead, Cady was the key development of his own personal story. Any kind of representation of Kalanithi’s story would be incomplete without her. She enables him to die with a joyful heart and peace of mind, embodying in actual practice the stoic approach to death that he previously examined from a philosophical lens. Lucy’s conclusion to the epilogue of When Breath Becomes Air is thus fitting: “Paul’s decision to look death in the eye was a testament not just to who he was in the final hours of his life but who he had always been. For much of his life, Paul wondered about death—and whether he could face it with integrity. In the end, the answer is yes” (410).
dimension to the existing cultural scripts, and in so doing he accomplishes what
Gawande so fiercely advocates for: patients using their concepts of the meaning of life to determine their experiences with death. In facing death rather than refusing to acknowledge it, Kalanithi’s account offers a more nuanced account of terminal illness narratives and a departure from the pure truth or happy ending model.
However, some aspects of Kalanithi’s narrative nonetheless threaten to become limiting for other patients. In subscribing to a black and white model in which virtue and “integrity” are defined by facing death “unflinchingly,” his model implies that other ways of relating to death are somehow lesser: not virtuous, lacking in integrity. While encapsulating the Kalanithis’ experience and values, this template has the potential to code as immoral those patients who seek to minimize suffering. Some patients, like Kalanithi, will find strength, peace, and meaning in facing death stoically, but others will endeavor to minimize suffering, and others will fall somewhere in between those two extremes. There is no right or wrong model here; rather, it is crucial that this variety of experiences is attended to without allowing any one model to define the right or “virtuous” way to die. In our conversations about death, it is important that we attend to the full range of experiences.
Gratitude, Oliver Sacks
discusses openly his exploration of the philosophical and spiritual aspects of death, Sacks writes: “And now, weak, short of breath, my once-firm muscles melted away by cancer, I find my thoughts, increasingly, not on the supernatural or spiritual but on what is meant by living a good and worthwhile life—achieving a sense of peace within
oneself” (75). Here, Sacks finds meaning in an apparently secular and personal model of peace. Importantly, illustrating Gawande’s proposals, Sacks’ ability to find this peace comes from considering what matters most to him: “Times of stress throughout my life have led me to turn, or return, to the physical sciences, a world where there is no life, but also no death. And now, at this juncture, when death is no longer an abstract concept, but a presence—an all-too-close, not-to-be-denied presence—I am again surrounding myself, as I did when I was a boy, with metals and minerals, little emblems of eternity” (47). Sacks here finds solace in the things that have made his life uniquely his.
the week, and perhaps the seventh day of one’s life as well, when one can feel that one’s work is done, and one may, in good conscience, rest” (75).
This spiritual or existential summation of life’s meaning upon the edge of death echoes the truth model. Despite specifically stating that he does not intend to evoke the spiritual realm, Sacks’ language is nonetheless caught up in it, thereby revealing the pervasiveness of our culture’s insistence on imputing meaning to dying. Though this applies to some patients, it does not apply to all.
A similar point can be made concerning Sacks’ comments about resting “in good conscience.” Sacks finds comfort in the thought that he has accomplished what he wants to in life. Having overcome his own unique set of challenges, he is thus able to reflect on his death in a very positive way—he is able to die with peace of mind.
Unfortunately, some patients aren’t able to identify with such rest, and the notion that they should could lead to added stress and discomfort. Though many patients’
experiences match Sacks’, not all follow this template, and it is crucial that those stories, too, are heard.
Chapter 5: The Hard Thing About Hard Things
Throughout the process of reading what biomedicine, culture, and patients themselves have to say about terminal cancer narratives I was forced to think about how to perceive these statements and how to honor the legacy of the patients—both fictional and real—that I had the opportunity to connect with through literature. The most challenging aspect of this process was understanding how, in all three of these spheres, we so often attempt to remedy our conceptualizations of terminal illness but then later endorse them. Siddhartha Mukherjee explains: “To keep pace with this malady, you [need] to keep inventing and reinventing, learning and unlearning strategies” (470). But how could I possibly reconcile cancer’s convoluted and
contradictory characterizations? While writing, I often found myself reflecting on the title of Ben Horowitz’s book about the intricacies and the difficulties of starting a business, The Hard Thing About Hard Things. Make no mistake: after spending over a year of researching and writing about death and cancer, I do not intend to fall into the same traps of inadequate analogic and metaphoric language by comparing mortality to entrepreneurship. However, if I have learned one thing about death, it is that it is a hard thing. As such, there is no set of conventions—not a fight metaphor nor an imputed happy ending—that will ever fully capture the essence of what it means to experience terminal cancer. And that’s the hard thing about this particular hard thing.
closest to him avoid the actuality of his death, and refuse to accept that he is dying with the exception of one person, his servant, Gerasim.
Only Gerasim understood his situation and felt pity for him. And therefore Ivan Ilyich felt good only with Gerasim. It felt good to him when Gerasim held his legs up, sometimes all night long, and refused to go to sleep…Gerasim alone did not lie, everything showed that he alone understood what it was all about, and did not find it necessary to conceal it, and simply pitied his emaciated, weakened master. Once he said even straight out, as Ivan Ilyich was sending him away: ‘We’ll all die. Why not take the trouble?’—expressing by that that he was not burdened by his trouble precisely because he was bearing it for a dying man and hoped that when his time came someone would go to the same trouble for him. (85)
This passage from the most canonical narrative on mortality offers a lesson that can be applied to terminal cancer, in all its permutations: empathy. Here, empathy means “understanding what it is all about” by putting patients at the center of how we respond to terminal illness. Every patient will have a different story, and cancer narratives need to honor the full gamut of these experiences.
significance of this definition in the context of terminal cancer narratives lies in both the ideas of understanding and appreciating (OED). The power of empathy, of
understanding and appreciating another person, is that it requires attending to that person’s circumstances and honors the particularities of those experiences—even when they differ from the terminal cancer experiences we consume in the cultural sphere. In What Dying People Want, Kuhl shares the story of a patient named Alice. Kuhl’s cohort of physicians was struggling to control the pain caused by her lung cancer. He writes:
The team had cared for many other people with lung cancer. Those people were testimony to the fact that cancer pain could be controlled, shortness of breath usually managed. Logically, we could assume that Alice’s pain was just like that of the other patients, and yet its effect of her was very different. This seemed to be a rare case of pain that could not be controlled. What were we missing? What was different about Alice? What was I to do? (xvi)
When Kuhl decides to talk to Alice directly about her pain, about what she might be going through, she responds:
…the pain is in my heart. It has to do with my daughter, Ruth. She is marrying a man I do not approve of and I told her so…I had to tell her because by the time she realizes that he’s no good for her, I will no longer be alive. I don’t expect to ever be free from this pain, and what’s more, unless circumstances change for Ruth, I don’t want this pain to be taken away. (xvi)
the group of physicians focused on Alice as an individual that they were able to
understand her pain—treating her pain “just like that of any other patient” didn’t work. This same idea extends into the cultural realm; we must not take for granted that every individual experience with terminal cancer is unique. The purpose of sharing Alice’s story is not to say that it is right or wrong for patients to assume the personal burdens of their loved ones like Alice does for her daughter; rather, Alice’s is an example of a story that doesn’t fit into the current paradigms associated with terminal illness. This story is an illustration that every patient has a different experience at the end of life and consequently needs something different.
Contemplating his impetus for pursuing the field of palliative care, a patient named Robert, Kuhl writes:
And I witnessed his pain after he was diagnosed with cancer. If I had known in 1980 what I know now, I would have spent more time with Rob, talking about his fears, his sense of failure in not being able to hold on to the belief that his cancer was curable, his confusion about the injustice of being so young and terminally ill, his anger toward his friends who didn’t want to hear his truth, his questioning who and where God was in all his pain and suffering. (xxiii)
heard. When all of our existing narratives are exhausted or simply aren’t meeting the needs of the patient, what can we do? We must avoid conforming to preexisting narratives and instead listen to the patient to understand what he or she needs.
BJ Miller, founder of the Zen Hospice Project, has attempted to create an
environment that does exactly that. Miller believes in an alternative path through death that is “a crescendo all the way through the end.” In other words, his hospice facility puts patient priorities at the center of treatment and care. A favorite treatment, in fact, is not any kind of medicine or physical therapy—but baking cookies (Miller). Miller, himself a triple amputee, had a personal encounter with near-death when he was in an accident in college. Through his study of art history and medicine and his own physical recovery, he developed a fascination with palliative care. Miller said, “I tell you it has been a liberation to realize you always find a shock of beauty or meaning in what life you have left.” This is what the crescendo is all about; it is giving individual patients the agency to write their own personal endings, whether or not that involves gratitude, beauty, meaning, or transcendence.
Miller used this mission as the foundation of the Zen Hospice Project. The end-of-life care center was built around the premise, what Miller calls a “design cue,” of reducing as much pain as possible from the process of dying. In creating this ideal for how to minimize suffering, Miller emphasizes the importance of understanding
cancer patient named Randy Sloan. Miller describes how “Randy got to play himself out.” Mooallem writes:
This is a favorite phrase of Miller’s. It means that Randy’s ability to be Randy was
never unnecessarily constrained. What Sloan chose to do with that freedom at
the Guest House was up to him…Yes, it’s about wresting death from the
one-size-fits-all approach of hospitals, but it’s also about puncturing a competing
impulse, the one I was scuffling with now: our need for death to be a
hypertranscendent experience. “Most people aren’t having these transformative
deathbed moments,” Miller said. “And if you hold that out as a goal, they’re just
going to feel like they’re failing.”
This idea perfectly encapsulates the purpose of this project. Just as the Zen Hospice
Project enabled “Randy’s ability to be Randy,” we need to be sure that all patients have
the ability to be themselves. All patients must have the ability to feel, speak, share, and
contemplate their experiences with cancer—even when those experiences don’t echo
the models to which we subscribe in the cultural realm, or what physicians tell us in the
context of biomedicine. Rather than avoiding dealing with death, either literally or
through some manifestation of a happy ending, we must learn to embrace the reality
that Miller describes—death isn’t always transformative and transcendent. This brings
us back to the idea of empathy: in order to give all cancer patients the space and the
ability to be themselves, we must recognize, honor, and endeavor to understand what
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