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The Fault in Our Stars -- No Serious Faults, Say Cancer Caregivers

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Does a Young Adult story resonate with teens who are dealing with cancer, and with those who care for cancer-ridden teenagers?

This summer, movie houses are being invaded by apocalyptic-disaster movies: Edge of Tomorrow, X-Men: Days of Future Past, The Expendables 3, Transformers: Age of Extinction, and Teenage Mutant Ninja Turtles.

As an antidote, there's The Fault in Our Stars, which features teenagers who have been transformed by cell mutations and who feel expendable, because they are edging toward uncertain tomorrows, few future days, and premature extinction.

The screenplay seems faithful to the novel's key scenes, conversations, characters, and story development.

Why would a 67-year-old read a Young Adult novel? Buy a copy, no less?

As a 67-year-old cancer survivor and member of a support group at Memorial Sloan-Kettering Cancer Center, I wondered about the support group featured in the YA novel that has topped the adult best-seller list. I wondered how the film adaptation would depict that support group. I was curious about the interactions and the coping strategies.

As a college seminar instructor whose courses are well populated by nursing, physical therapy, occupational therapy, physicians assistant, athletic training/sports medicine, and diagnostic imaging students, I wondered if the novel (along with scenes from the film) might provide lessons in communication, sensitivity, and empathy worth venturing in next semester's curriculum.

In the author's note, John Green cautions readers that "this book is a work of fiction" -- but he goes on to declare (quite rightly, I believe) that "made-up stories can matter."

Okay, there are indeed made-up stories that do matter. For thousands, maybe tens of thousands (more?), The Fault in Our Stars is "organic matter" -- a love story and a story about loving that delivers emotional "nutrients."

But I wondered if the story registered as genuine and relatable for teenagers who are actually afflicted with cancer.

From a pediatric nurse practitioner:

"In many respects, the characters' conversations, their descriptions of pain, their coping strategies, their pranks, even their musings and 'philosophizings' -- they capture some adolescents' cancer experience. I've heard approximations from my patients," notes Melody Brown Hellsten, DNP, Pediatric Nurse Practitioner at Texas Children's Cancer and Hematology Centers. "I would recommend the novel to colleagues."

Hellsten, who began pediatric oncology nursing in 1992 and has done pediatric palliative care since 1998, would not recommend the book to patients or parents of patients unless they inquired about the book specifically.

"I'd think about the particular patient's history and dispositions, and what we know about the family. There's fatalism that might not be helpful: there's fatalistic talk about 'the universe' and about 'oblivion' -- about the meaning of life and the meaning of any one person's life. Softened, I suppose, by fatalistic humor. The story can be inspirational for some, but it wouldn't be comforting or helpful to every patient or family. That's my foremost and overriding concern."

Hellsten, who is a pediatrics instructor at Baylor College of Medicine, explains:

"If, on their own initiative, a patient or family member tells me they've read the book, I'd consider how we might use some scenes, or the characters' discussions, in a therapeutic way. There are descriptions of pain, despair, disgust, dread -- and, more importantly, hopefulness -- that might be confirming and even affirming therapeutically.

"Many teenagers who are obliged to contemplate death -- their own passing -- tend to be pretty sophisticated in their thinking. They have absorbed very adult vocabulary. I remember a toddler whose first word to his mother was 'Methotrexate.'

"While a very young patient may not recall all the early crises and responses, the parents surely do. Perhaps the book and the movie bring that home. But even more significant is that the story -- even as fiction -- suggests how some youngsters can deal with sadness and anticipate grief, bereavement; and yet quip and laugh."

Hellsten observes that "the voice of the child is not especially well represented in our medical literature."

From a cancer survivor, now a caregiver:

The voice of the child is well conveyed by 15-year cancer survivor Christian Spear, who had to contend with acute lymphoid leukemia from ages 4 to 8.

Spear now helps young cancer patients (some terminal) write and produce songs at a special studio within Houston's Texas Children's Cancer Center. She has become acutely aware of what registers with patients -- what appeals, what distracts and diverts.

"Our teenagers are dealing with illnesses that control just about everything they do -- what they do, when they do it, what they can't do. For boys, especially, video games play a role -- part catharsis? Part transference? The book suggests as much in a metaphoric way. In video games, there are survival strategies and killing strategies; the hand-held ability to control one's risks and one's fate: to select when and how the video game operator dies. Psychologically telling, don't you think?

"What might also be telling -- for boys especially -- are carnage movies (with piles of corpses). Maybe these films trivialize death in a way that allows patients to speak openly about it, and even mock it."

As to Hazel Grace's self-aware descriptions of her appearance, Spear finds them to be somewhat relatable, both as a caregiver and a former cancer patient.

"I remember going through a box of photos with my mom and seeing a frail young girl who had sunken-in cheek bones, and sickly-pale skin. I asked my mom who it was, and to my surprise, she said it was me. I could hardly recognize myself. I was equally unrecognizable when, with meds, my cheeks grew to be 'chipmunked' like Hazel's are described."

For cancer patients, IV poles and cannulas do not tell the story; the story is often related from the head.

From a child life specialist and her patients:

"Hazel's got hair. She's had chemo, and she still has hair." That observation comes from a 16-year-old who is being treated for relapsed leukemia at Lurie Children's Hospital of Chicago.

"Losing hair is an identifier; makes us recognizable as cancer patients. And we lose something else: We've had hair since our very first months. Everybody takes it for granted. We like to comb it; we'd run our hands through it when we were bored or fidgeting in school. Chemo takes away that privilege. We can't hide the loss. It's the ultimate label that we have cancer."

The book and the movie have prompted compelling discussions among the cancer patients Heidi Thomalla (MS, CCLS) works with in her capacity as Senior Child Life Specialist in the Inpatient Oncology/Brain Tumor/Stem Cell Transplant division of Lurie Children's Hospital. "In a meaningful, mature, way, these teens and tweens compared the story's depictions with their realities.

"A particularly astute 11-year-old leukemia patient observed that in the movie Hazel isn't hospitalized often, and isn't undergoing extended treatments which limit a patient's ability to get up and go on social visits and jaunts. This young patient noted that there are days when she doesn't have enough energy to walk from one room to another. She also noted that Hazel has a lot of independence. Enviable, but not entirely realistic -- for in real life, parents worry and are protective in enforcing doctors' orders.

"The consensus is that -- not surprisingly -- the movie shies away from day-to-day ordeals in service of a love story. Even as they view the story as romanticizing the cancer experience, these patients value the glimpse it provided into their world. From the book, they appreciate and endorse Hazel's descriptions of her pain: 'my chest was on fire, flames licking the inside of my ribs fighting for a way to burn out of my body' -- 'apocalyptic' -- 'intracranial firecrackers' -- 'exploding supernovae'.

"What does ring true is the book's account of an ER scene in which Hazel, unable to speak, holds up fingers to indicate excruciating pain as a '9' rather than a '10' - holding back the '10' - saving the '10' for something even worse. Our patients have learned to expect worse and have developed ways of steeling themselves for it. Call it stoic -- but actually heroic."

Along with the "confederation" promoted by the novel's descriptions, Thomalla credits the book and the film with promoting worthwhile talks about "living" -- conversations which can quiet some fears and apprehensions. She does note that while patients value support and morale-boosting they are put off by pity.

"Yeah, for now, I'm sick -- but I don't want to be sickened further by pity," explained a 16-year-old. "I don't need something else to be overwhelmed by. I don't need something else to upset me. I don't need gifts. I need company -- conversation that is normal; that has humor and wit. That's my ticket to feeling normal and happy. Can such a sad story get my visitors to think happy? We'll see."