Leah Stamm

In this essay, I will analyze how the illness narratives The First Cell and The Emperor of all Maladies, by Azra Raza and Siddhartha Mukherjee, support their claim that the current approach to cancer research is unsuccessful. Mukherjee explores cancer through historical research and experience as an oncologist, to create a biography—with cancer as the main antagonist. Mukherjee personifies cancer as a villainous character, to offer a comparison of this complicated subject that his audience can understand with ease. Additionally, I will look to Raza’s The First Cell to examine how she suggests changes should be made. I believe that her two decades working with MDS patients combined with her experiences as a cancer widow shaped her perspective and led to her negative critique of the current approach to medical research. Looking at these stories through the different lenses and outlooks provided by various scholarly sources, I will show how the idiosyncrasies of illness narratives reflect the author’s distinctive perspective and work to create a persuasive argument for their audience.

Negative Discourse

The steps towards curing cancer have been so incrementally small, that basically nothing has changed. Raza comments on this in her The First Cell, “mostly we have euphemisms to sweeten the bitter truth that we don’t really have better treatment than what we were offering fifty years ago” (Raza 232). The last 50 years have been remarkable for human history. Humans have been to outerspace, invented technologies including the computer, and made progress in almost every field imaginable—except cancer research. “Sweetening the bitter truth” doesn’t do any good for anyone, patients or doctors alike (Raza 232). In fact, it creates a superficial relationship between the patient and the doctor. Raza offers examples of the different aims to illustrate why this disconnect happens. The doctor knows the truth about the likelihood of beating cancer, and when the patient is left in the dark about what is growing inside of them, the doctor adopts a God-like power over them. Literary analyst, Jennifer Edwell, also contributes to this idea in a different context. Her dissertation is about the relationship between mothers with gestational diabetes and their doctors, yet she found the same problem. She claims that trust in the relationship “is characterized by an imbalance of power and knowledge” (Edwell 2). Patients are expected to surrender themselves to the medical miracles of their doctors, trusting them with their lives. Arthur Frank defines this idea as the “sick role” (Frank 13). Frank analyzes Audre Lorde’s Cancer Journals to introduce the concepts of both the sick role and “negative of dialogue” (Frank 11). Frank argues that patients and doctors will sometimes have different aims and objectives, which leads to conflicting perspectives and a lack of validation from each party.

When this negative discourse happens, it is unproductive for everyone. In Audre Lorde’s experience after her mastectomy, she wanted to reclaim her new body as her own, regardless of how the public perceived her new chest as “socially unacceptable”. She was proud of her body and scars, for it showed how hard she had fought and beat cancer. However, her physician was appalled at the fact that she chose not to wear a prosthesis. The physician was set on conforming Lorde to the “restitution narrative”, being the one responsible to nurse her back to the whole person she was before surgery (Frank 13). Frank discusses how both sides are right within their own spheres. Lorde should be able to choose what to do with her own body without judgement or push back from those around her. The physician’s job is to show the public how the medical community can heal a person back to their original health, erasing all the marks that show the past struggles. However, when the patient doesn’t want to cover up her fight, yet the physician’s job is to show their capability of restoration, the “negative of dialogue” occurs (Frank 11). Each person is expecting the other to recognize them in their specific terms that they find validating, and when those perspectives don’t match, the validation cannot be given. These narratives by Edwell, Frank, and Raza that all exploit unmatching aims, work to persuade their audience to change their outlook on cancer treatment.

Misplaced Priorities

The medical community is placing too much importance on things like looks and restitution so that the actual goal—finding a treatment or cure for cancer—is at the bottom of the priority list. Raza brings up the same point in her book The First Cell but in a different context. She explains how the medical community is approaching research in a very unproductive way. Raza is able to confidently discredit their cases based on both her medical and personal experience. As an oncologist, she has seen the data from the National Cancer Institute—almost three quarters of their near 100 billion dollars goes to clinical trials on animals and tissue culture cells with a failure rate of practically 90 percent (Raza 188). To anyone—in any profession—looking at those statistics, it is obvious a change needs to be made in research priorities. The disconnect between the resources being put into the research and the lack of positive outcomes is so obvious, I can’t help but question what it will take for the people at the top to make a change. In chapter seven Raza creates an interdisciplinary outlook by overlapping the stories of one of her cancer patients, Omar, and her cancer-ridden husband, Harvey. There have been hundreds of thousands of patients whose diagnosis was too late, leaving them to choose the lesser of two evils: resorting to clinical trials to prolong their life by at best weeks, or palliative care, which leaves them without hope for a cure and only a wish to die comfortably. Omar’s last hope was a trial drug that Raza herself had to ask favorusly for, and even it would only possibly extend his life a couple more weeks. Harvey on the other hand was an oncologist himself, and when he and Raza heard the diagnosis, they knew it was a death sentence. The only thing Raza or any doctor could do was to try to make Harvey comfortably pumped with pain medication. In talking about both of these men in a respectable and admirable way, and by including their pictures and quotes, Raza is able to passionately connect with her audience, urging them to join her in finding a new approach to cancer treatment.

Raza’s assessment starkly contrasts that of many professionals in the medical field who devote their lives to cancer research. Raza’s writings therefore contradict how many people view cancer research. She argues that the resources—time and money, primarily—that are put into cancer research could be put to better use elsewhere. Instead of investing in research, she argues that we must put more emphasis on avoiding cancer as a whole, by focusing on the pre-cancer level and behaviors in the population that contribute to increased cancer. Instead of putting cancer patients, who already face an extremely difficult journey, in the position of gaining false hope, physicians must be blatantly honest. From the view of a literary analyst, I recognize the importance of authors using evidence to appeal to their readers as Raza does both professionally and emotionally.

Admitting Ignorance

Referring back to the disheartening statistics of the National Cancer Institute’s clinical trials and research, I have to wonder why these studies continue to perform in the awful way they do. It is clear that this was not a hiccup in the system, or just one bad year or one bad trial. These saddening statistics are the average annual results from the past half a century. Raza compares the medical research system to the recurrent cycles of government that create and allow a specific group of “privileged individuals [to] exercise control over institutions and organizations handing out prerequisites to succeed in dominating the field” (Raza 45). Using this comparison expands her argument to something her audience of non-medical professionals can also understand. Her comparison to a long, slow, painful bureaucratic process of government allows the reader to understand how these studies often yield no meaningful results, even with the full force and drive of the medical community behind them. With so much emphasis on the application for grants, paperwork, and other activities that have no direct relation to the actual process of research, much of the power behind finding a cure is lost in the process. Similar to political power, power within cancer research becomes entrenched. Therefore, powers of grant funding and other important processes become “monopolized” (Raza 45). Raza’s word choice with “monopolize” and talking about “democracy” deepens this comparison to political influence, and highlights the ills of the medical community in regard to cancer research—how the entrenchment of political power mirrors that of power within the cancer research community (Raza 45).

Raza’s incendiary claim that cancer research has made little progress sheds light on a fact that no one else seems willing to admit: cancer research has made little progress. Azra states this bluntly, “It is an embarrassment. Equally embarrassing is the arrogant denial of that embarrassment” (Raza 13). The medical field will not admit their loss in the war against cancer, which doesn’t do any good except get the hopes of their patients up—even that however, will soon be brought back down when the reality of cancer treatment presents itself as incompitent and the patient understands after it is too late. Azra questions why the medical community “treat[s] the public like fragil, vulnerable, oversensitive, easily hurt, anxious adolescents needing protection from stressful details” (Raza 14). In failing to address the abysmal reality that cancer truly presents, Azara argues that we, as a society, are doing cancer patients an immense disservice. Raza’s approach to persuading her readers can be used as a model to other illness narrative authors. The medical community has been so overly convincing that they are doing the best they can by exaggerating their success to the public, but Raza pushes back. The reason these narratives are written is because author’s are unsatisfied with current treatment. And so, in developing illness narratives, the author has to first recognize and admit to the possibility for change before they can suggest something new.

Public Support

Why is it that not more people are speaking out for change? It is possible that the reason that medical developments are so slow to come is because there is not that much support or urge for a cure from the public. For a long time, the idea of talking about illness and disease was very taboo.

As discussed before, Arthur Frank brings up the idea that when patients are sick they are pushed by their physicians to conform to the sick role, admitting weakness and helplessness. There are many ideas circulating around cancer and what it being ill really means. In Susan Sontag’s Illness as Metaphor, Sontag explains the stereotypes and cliches assumed about people with cancer. It is described as “de-sexualizing”, making its victims skinny and weak (Sontag 13). There was even a Freudian idea proposing that cancer is caused by an unhappy marriage (Sontag 23). As a survivor herself, she advocates for a stronger sense of community so other survivors and patients can be supported. Sontag’s goal is to negate these ideas and create a more candid environment to discuss talking about and living with cancer.

One way to normalize talking about cancer begins with offering an easier understanding of what cancer does to those it victimizes. Metaphors are a very effective way of comparing a complicated subject to one that most can understand. In the first part of her book, she discusses the metaphors people used to describe cancer patients in a negative light. From the part of the book from her own perspective, Stontag uses metaphors to help those who are healthy to understand what cancer is really like. For example, Sontag compares cancer’s “take over” to a foreign source, claiming “the patient is invaded by alien cells” (Sontag 14). The connotation behind Sontag’s word choice in this passage deepens her argument that cancer has beaten us so far, as a human race, in the war. To describe cancer as a colonizer implies all the political baggage that that word holds in connection to imperialism. In the same way the western powers had their period of colonial expansion in the 19th century, taking over Africa and parts of Asia without regard for the lives and cultures and communities they destroyed, cancer selfishly expands through its host, killing the body it invaded. As western powers looked to exploit the resources from their subjugated countries, cancer exploited the body’s materials until depletion, ironically peaking at its own self destruction. Using this metaphor deepens Sontag’s connection to her primarily “Western”, and probably colonizer, audience by bringing in this image of their own history they can easily understand.

When the general public can comprehend what only the most intelligent oncologists could before, they are able to have a say in the medical discourse. An indirect consequence of Sontag urging fellow survivors to speak out and normalize illness, causes commotion in the medical field too. The power shifts in the extremes in a patient-physician relationship as the public becomes more aware of how cancer evolves and attacks in the body, and will not rely so much on the intellect of their doctor. Raza and Sontag are examples of effective illness narratives because they both connect with their readers through specific literary devices allowing the general public to understand complicated subjects with ease.

Getting Personal

It is a common misconception that doctors are supposed to withhold their feelings from getting emotionally involved with a patient. The idea is that everything about their choices in treatment should be objective and routine so that everyone, no matter the doctors personal prejudice, receives the same quality of care. Azra Raza mentions this phenomenon while she is discussing the analogy between the health-care system and political bureaucracy. She talks about how physicians are encouraged to “see as many patients as possible within the allotted time” instead of seeing a fraction but developing a relationship (Raza 49). On the other side of the relationship, patients are only seeing one doctor, and that doctor to them is the all-knowing God of their world. Literally the only one who can save their life. Clearly this disconnect causes an unhealthy relationship.

Many other scholars, physicians, and patients are calling for a different, more personalized approach. When doctors take the time to connect with their patients there can be many benefits—even an emotional improvement from the patient when their doctor rewards them with more attention can cause physical improvement and better response to the treatment. In Rebecca Dresser’s work, “Bioethics and Cancer: When the Professional Becomes Personal”, Dresser argues that when a physician allows themself to approach their patient with a personal perspective, it is mutually beneficial to both them and their patient. The patient feels more taken care of and the doctor’s comprehension of the medical profession deepens.

[This draft ends here — the final version couldn’t be found, so this is the last saved version.]

Works Cited

Dasgupta, Sayantani. “Reading Bodies, Writing Bodies: Self-Reflection and Cultural Criticism in a Narrative Medicine Curriculum.” Literature and Medicine, vol. 22, no. 2, 2003, pp. 241–256. Project MUSE.

Dasgupta argues that few health narratives feature “a medical professional’s own journey through the experience of illness” (241), and that this one-sidedness creates a perspective divide between doctors and their patients. Through presenting insights from a medical school course on gender dichotomies in medicine, Dasgupta explores the mind-body dichotomy, which she believes marginalizes women by characterizing “patients by their bodies” and “physicians by their scientific minds.” Instead of trying to create an exclusive culture around medicine, whereby what happens inside stays inside, Dasgupta urges professionals to practice more self-reflection, inclusion, and empathy so that discriminatory barriers can be broken down.