Tag: cancer

Meet Marleah: Testing positive for the BRCA2 gene at 25

Marleah’s health narrative comes from the CDC.gov website. She discovered she had the BRCA2 gene mutation at age 25. Marleah discusses her navigating the challenges of motherhood while considering surgery after completing her family. She chose to manage her breast cancer risk through frequent screenings and lifestyle choices rather than opting for preventive surgery. Inspired by her mother’s own battle with breast cancer and her own gene mutation discovery, she became a university professor specializing in hereditary cancer research. Her work focuses on understanding the emotional impact of genetic uncertainty and developing strategies to help individuals cope. The narrative highlights the complexity of decision-making in genetic disease management and underscores the importance of personalized approaches.

This narrative could be used to explore the intricate decisions patients face when managing a genetic disease, specifically a BRCA2 gene mutation. Marleah’s story highlights the complexity of decision-making in genetic disease management and underscores the importance of personalized approaches. As a mother, Marleah faced certain ethical dilemmas when it came to decisions about her own health. This story could also be useful for those who are forced to make similar decisions.

Cultivation Also Starts With C

“Cultivation Also Starts With C” by Jess Skyleson is a poem that uses the invasive, difficult to remove plant Japanese knotweed as a metaphor for cancer without ever saying the word, “cancer.” Skyleson switches back and forth between describing the beauty and tenderness of the plant itself with the devastation it wreaks on the environment to ultimately center the story within a doctor’s diagnosis. This poem could be used in a variety of health humanities courses to, for example, encourage students to consider alternative metaphors for thinking and speaking about cancer. It could also fit in a course that explores the intersection between human and environmental health.

Mercy

Through beautiful description and comparison Selzer writes about an interaction between a patient, his doctor, and his family at the end of his life. In the story, the patient is in the hospital, suffering and in pain. This piece serves as the doctor’s narrative, as he, too, suffers in deciding how to ease his patient’s pain, which can only be done by euthanasia. The doctor deliberates back and forth about the options and ultimately gives the patient what should be a fatal dose of morphine, yet still, he does not die. This piece raises questions about medical ethics, listening to patients, listening to families, and making informed decisions in healthcare.

This narrative could be used in courses regarding medical ethics, death, medicine, and narrative medicine. This piece could prompt discussion about medical ethics, who gets to make choices, and why certain choices are made in healthcare. It can be used to show the place of creative writing in medicine, as it provides a creative account of an interaction between a doctor and a patient.

The Immortal Life of Henrietta Lacks

This book is a biography of Henrietta Lack, a black woman who died of cervical cancer in 1951. Before her death, Henrietta Lacks’ cells were harvested from her cervical tumor without her knowledge or consent. The HeLa cell line originates from these cancerous cervical cells, and it is the cell line most used for any study on human cells. Neither Henrietta nor her family were consulted nor informed about the mass distribution and use of her cells until decades later when her cells were already the cause of many medical discoveries and breakthroughs. This book was the first to paint the whole picture of the human behind the most famous cell line.

This book might be used in courses on research and medical ethics, on health (in)equities, or on narrative medicine. For example, it sheds light on all of the factors, both medical and societal, that led to a lack of adequate or ethical care. Her story shows the importance of health stories for humanizing medicine. It allows for reflection on the history of healthcare as it relates to women and people of color (specifically black people and black women).

Wake Me up When September Ends

The hit single “Wake Me up When September Ends” was written by Billie Joe Armstrong about his father who died from esophageal cancer when Armstrong was 10 years old. This popular song illustrates a health storyline that is likely overlooked by many casual listeners. Listening to the song, paying close attention to the words, could open discussion of grief and loss.

A Strange Relativity: Altered Time for Surgeon-Turned-Patient

This is an 8 minute video made by Stanford neurosurgen and author Paul Kalanithi before his death. He reflects on the experience of time–as a physician, seeing patients and monitoring time and now, as a person with cancer and the parent of a baby.

The video could be used in a course in which Kalanthi’s book is assigned, to give students an opportunity to hear his reflections in his own voice and to see images of him with his family. It is also an example of the larger issue of what physicians notice about medical practice when they become a patient themselves.

Un último acto de amabilidad íntima

Michelle Friedman describes providing home care for her estranged younger brother as he dies from advanced pancreatic cancer. She touches on difficult topics of conversation, her brother’s depression, and grappling with death and religion.

An English language translation of this essay is available under the title, “A last act of intimate kindness.”

UNCOVID–a 55-word story

This poem by Wald is composed of 55 words describing his experience as a spouse caregiver to a patient with brain cancer. The adjectives were similar to those Wald heard being used to describe the experience of COVID. In a brief afterward, he explains his intention for the poem: “I hope that this story might help readers pause, reflect, remember, and respond to suffering, both covid and ‘uncovid,’ with compassion
for others and for oneself.”

This short poem and the author’s reflection could be useful prompts for a discussion of how COVID experiences are similar to or different from other more “ordinary” or familiar experiences. There is also room here to discuss the ambiguity in poetry and the way it can allow both for multiple individual interpretations and empathy/common ground.

Look Now Project: Survivor Stories

This digital humanities project includes stories and images of breast cancer survivors. Project creator Tula Goenka (a breast cancer survivor) and her collaborators seek to “break down the barriers between a survivor’s public persona and their private struggles with the disease, and to put a face on breast cancer in our local community.” The first installation in 2018 included interactive text, graphics, mirrors, and an experimental silent film accompanying 25 participants’ clothed photographic portraits and images of bare chests, and 19 who chose to remain anonymous except for their bare chest close-ups. In 2019, Goenka and her collaborators created TitBits: Breast Cancer Stories, a documentary theater performance. The multi-media website includes media coverage of Look Now and TitBits, oral histories, images of bare chests after lumpectomy or mastectomy, and resources on breast cancer.

I have used Anju’s story (“Life Happens Keep Smiling”) from this website in a Narrative Scribe Training workshop for college students, medical students, and health care professionals. After viewing the video together, we discussed what may be left out of a transcript and the importance of listening closely not only to what is said, but also how it is said, what is not said, and how our own experiences and identities shape what we hear.

Being Mortal: Medicine and What Matters in the End.

A contemplation of the limits of medical care through many specific stories of decision points about when to stop treatment in favor of palliative care. Gawande has been a physician for a long time and an activist/ writer on the side of “know when to say when” – i.e. just because medical technology exists to prolong life doesn’t mean that’s the best thing to do – for almost as long. He makes convincing cases for stopping expensive treatment and “giving life to days” more often than Hail Mary passes that might bring on the 2% chance of a cure.

The book is a readily accessibe read for many audiences and could be assigned in full or excerpted. It was also the subject of a PBS documentory that could be used to supplement class use and bring the text to life.