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Academic Care and Recovery Patient Experiences

Emotion Work During Colorectal Cancer Treatments

read this paper
  • Silence -> seen as ‘not getting upset in front of each other’ -> preserves relationships in CRC oncology clinic
    • Silence as relational form of moral work that preserves others’ well-being
  • Studies show a lot of emotional distress among patients with and beyond CRC
    • 1/5 people affected by CRC has a post-cancer diagnosis of depression
  • Emotion work in surface acting vs. deep acting
    • Embodied emotional experiences and the performative role of emotions
  • The study follows participants through treatment pathway until there was no evidence of disease in their bodies or referred to hospices
    • Some focus on pragmatism/practicality rather than emotions
    • Many manage expressions of emotions continuously in front of others
  • Nurses are cognizant of emotional texture of cancer treatments

“We just try to open it up and give them an opportunity to talk about [what they are feeling]. It is often letting them be cross, or to be angry, or to be frustrated, because all are logical and normal emotions to have during cancer treatments”

A Filipina senior chemotherapy nurse.
  • Staff and health professionals also have to do some emotional labor -> keeping boundaries and maintaining balance between distance and closeness to patients while keeping their emotional peace
    • Nurses are expected to connect with patients to do emotional labor in contrast to physicians, many of whom decided to pursue a ‘happier’ field
  • Many patients in the CRC support group disclosed the need to do emotion work as to not ‘burden others’ in fear of damaging relationships with others
    • The relatives also experience this fear of being a burden
  • Existing norms surrounding emotional management of relatives -> to not be upset because expressing it would impact their loved ones

Silence: reconsidered as relational practice of moral work, not maladaptive coping behavior

  • Reflections/questions:
    • Silence as moral relational work connects to
Categories
Academic Culture Health Disparities Race and Ethnicity Socioeconomic

Colorectal Cancer in the United States and a Review of Its Heterogeneity Among Asian American Subgroups

READ THE PAPER here

The data aggregation problem and health disparities

  • Third most common cancer in the U.S
  • Asian American subgroups vary widely -> problem of data registries and research aggregating them into one group
    • Discussed by Wailoo’s book How Cancer Crossed the Color Line -> historically race and ethnicity has been defined arbitrarily by the dominant group (white) -> all other groups are aggregated in terms because they are ‘other’ to the white group, therefore being blind to each group’s own internal diversity
  • Heterogeneity in incidence -> related to country of origin, diet, screening, and lifestyle choices
    • Japanese Americans have the highest incidence, and all incidence are increasing among other groups except for Korean Americans
  • CRC incidence is highest among non-Hispanic black populations, lowest among Asians/Pacific Islanders
  • SEER program only started collecting data on Hispanic Americans and Asians/Pacific Islanders since 1990
    • What does this say about missing data and inability to create historical trends?
  • Gap between mortality rates among Black and White Americans have increased over the last 3 decades
    • Disparities exist between races but also within
  • Screening prevalence lower among ages younger than 65, non-White, less educated, without insurance, recent immigrants, Hispanic people, and those with language barriers
    • Asians are less likely to screen than non-Hispanic whites
A study finding that data aggregation of Asian American subgroups conceal health risks. Article found from here: https://dailybruin.com/2020/03/06/study-shows-aggregated-data-conceals-asian-american-subgroup-health-problems

Once again, the ‘Western’ diet as a risk factor?

  • Dietary chemoprevention -> cultural aspects of diet and lifestyle in Asian Americans in cancer prevention
    • unpolished Thai rice and reduced CRC risk because of high phytochemical contents
    • Sea cucumbers, abalones are both Asian delicacies are shown to have anti-tumor properties
  • Risk factor: Risk increases among Asian Americans as their diet becomes ‘Westernized’
    • Asians with longer immigration history parallel cancer risk patterns of U.S natives
    • Asians with more recent immigration history parallel cancer risk patterns of home countries
  • Reflections/questions
    • Emphasizes the need for more complete data (Flaws in databases and data collection methods: Primarily in English, did not capture populations with low English proficiency, vary in time frame/sample size/geography, SEER data is more recent on Asians)
    • Perhaps more data on cultural and behavioral factors that influence prevention and screening?
    • Potential: culturally tailored screening for subgroups, policy revisions and advocacy for immigrants dealing with insurance
Categories
Health Disparities Young People, Screening, Prevention, and Diagnosis

More Young People Are Dying of Colon Cancer

READ THIS ARTICLE
X-ray of a colon showing a tumor constriction
  • Spike in colorectal cancer rates among younger Americans
    • Not due to earlier detection and diagnoses -> mortality rates are rising from previous decades

“This is not merely a phenomenon of picking up more small cancers… There is something else going on that’s truly important.”

Dr. Thomas Weber, https://www.nytimes.com/2017/08/22/well/live/more-young-people-are-dying-of-colon-cancer.html
  • Researchers are not exactly sure why, but there are speculations:
    • There is a study that found prolonged antibiotics use in adulthood to be associated with greater risk for precancerous polyps -> antibiotics alter gut bacteria
    • Younger people have polyps that are harder to see and remove during colonoscopies
  • Policy changes?
    • Expanding universal screening -> more controversial and costly -> question: are we making young people go thru screening for no reason?
    • Frequent complications from. colonoscopies -> other testing options encouraged
    • Concerns over false positives and negatives
  • Reflections/questions:
    • The statistics and findings of the new study reflect higher death rates rather than just earlier detection and diagnosis, which challenge the common, long-held myth that cancer is a disease of the old, which is explored often in our class readings, specifically Jain’s book.
    • In the context of screening and detection, the article raises the importance of screening for younger generations and new risk  factors previously unknown to the common population.
    • How can we examine the issue of earlier screening and factor in young people’s increasing burden of cancer?
Categories
Chemo Patient Experiences Side effects Treatment and Side Effects

Folfox and Oxaliplatin Induced Neuropathy

READ THIS REDDIT THREAD

Seven months since ending Folfox and my oxaliplatin induced neuropathy isn’t getting better.

  • Neuropathy could be permanent
  • Others had it dissipate at 18 months or so
  • Vitamin B, lyrica, Gabapentin, and supplements as helpful, and other coping mechanisms such as hand warmers, socks and specific types of shoes
  • Reflections/questions:
    • How can alternative medicine and other types of alternative healing help cancer survivors?
    • There should be more structured post-chemo care for survivors and more long-term follow up, as many people have permanent body disfigurements, disabilities, and other changes
Categories
Chemo Patient Experiences Side effects Social Media Treatment and Side Effects

N.E.D Today!

Read this reddit thread

N.E.D = No Evidence of Disease (Cancer free)

  • A Reddit thread composed of a survivor’s POV discussing that he’s cancer free
    • r/coloncancer also composes of other posts and comments regarding colon cancer experiences
    • Community building and helpful for sharing advice, experiences and to ask for help/support
  • CarcinoEmbryonic Antigen (CEA) is a tumor marker and its levels are very low + clear scans -> N.E.D status
  • Side effects of XELOX chemo: hair thinning, intolerance to cold, nail shedding, neuropathy in hands/feet, short term memory retention issues
    • Neuropathy can last 18-24 months
  • Reflections/questions:
    • It seems that many cancer patients are very familiar with scientific and complex biomedical terminology (overall in the r/coloncancer thread) -> is this common for many patients of other cancer types?
      • Importance of agency and communications/understanding as a cancer patient
    • Neuropathy as common side effect -> Should be studied more in research
      • Other side effects of chemo and radiation should also be given more attention to
    • Community and support groups as very helpful and therapeutic to many colon cancer patients
Categories
Academic Communications and public perception Illness in Media Literature

Persuasive Effects of Linguistic Agency Assignments and Point of View in Narrative Health Messages About Colon Cancer

READ THE PAPER HERe
  • Communications surrounding, or about colon cancer, and how linguistic agency and point of view impacts narrative force.
  • Agentic language impacts people’s perception of the severity of health threats
    • Perceived susceptibility to colon cancer is highest when agency is assigned to people, not cancer.
    • Ex: ‘I developed cancer’ vs. ‘Cancer developed in me’
  • Use of temporal agency language in health messages -> assigning temporal agency to death rather than dying person -> greater fear
  • Possible: messages in narrative forms can transport readers to narrative world regardless of POV
    • Super important as it plays into cancer patients and survivors’ storytelling- it doesn’t all have to be in first person POV as long as the narrative form is there
  • Reflections/questions:
    • Important implications of health communication strategy especially in public health campaigns, social media marketing by corporations, and patient-doctor communications and messaging.
    • Affirms narrative power of storytelling by cancer patients and survivors -> to the level of sentence + word choice
    • How can this study and further research address Jain’s criticism of health messaging and language surrounding survivorship in media and popular culture?
Categories
Academic Care and Recovery Personhood Treatment

“I Didn’t Feel Like I Was a Person Anymore”: Realigning Full Adult Personhood after Ostomy Surgery

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  • Long term CRC survivors need temporary or permanent ostomies -> requiring the use of ostomy equipments and stoma bags
    • Parts of their intestines are removed and the remaining part is attached to an opening in abdoment where feces are discharged
    • More documented treatment-related challenges among survivors
  • Ostomies result in complex emotional, social and physical concerns
    • Adjustment to managing uncontrollable bowel movements is compared to second period of toilet training -> compromises adulthood
    • Erosion of adulthood due to physical disability
    • Relationships and sexual concerns
  • Surviving CRC with ostomy disrupts identity and adulthood -> loss of embodied self control
    • ostomy interferes with social roles and ideals
    • Western culture involves self responsibility
  • Narratives enables survivors to create continuity that reconnects them to social and cultural worlds
    • Hence why literature and art produced by cancer patients and survivors are so important
    • Cancer is very isolating and creating narrative is a way to reconnect

I didn’t feel like I was a person any more. I felt more like a non-person, you know, because you’ve got these things on you and then you’ve got this attachment, and not knowing how to care for this. We’d go places and we’d have to come home because I’d like overflow. … I guess that’s all in not knowing how to care for it.

A 62 year old divorced, ethnically mixed Filipina woman, discussing her difficulties and how they relate to personhood degradation.
An example ostomy bag
  • The women interviewed had common themes of technical difficulties, trial and error and the steep learning curve required to get used to living with an ostomy bag
  • Different techniques for regulating bodily functions and gaining control to realign with the ‘normal’ world to fit in and feel ‘normal’
    • Irrigation
    • Regulating timing of foods and dietary modifications
  • Reflections
    • Incorporate research similar to this study into nursing and other spheres of care -> rehabilitation efforts and follow-up efforts with health professionals to support these individuals
    • More interventions could help survivors living with impairments
    • Representations and discussions of ostomy procedures and bag can help make the process visible and negate stigma, such as this photoshoot

Categories
Academic Prevention Young People, Screening, Prevention, and Diagnosis

Western Style: A Recurring Theme?

read the paper

What does it mean when the risk of developing colon cancer is associated with a ‘Western’ diet and lifestyle?

  • ‘Western’ diet -> defined as high in red meats, fatty products, refined grains and desserts
    • The study found that those who closely follow this diet were more than 3x likely to relapse than those whose diets were at the opposite end of the scale
  • Authors stress that this study is observational and does not provide conclusive proof

“… people treated for locally advanced colon cancer can actively improve their odds of survival by their dietary choices”

Jeffrey Meyerhardt
When Googling ‘Western diet’, this is what I found on the image tab.

“Maybe the message is it’s never too late to change your diet” 

Andrejs Avots- Avotins
  • Reflections/questions:
    • What does this mean in context of socioeconomic status and other factors? Is it always feasible to change diet and improve outcomes/avoid cancer risks? How does diet interact with other factors?
    • Emphasis on individual lifestyle choices rather than broader contexts
      • Would this place blame on individuals rather than systems? (specifically, blaming individuals in the study who ascribe to the Western diets)
    • Taken out of context, this study could’ve been shown to others with the basis that diet is a very big factor that causes cancer rather than is associated with it (and still needs more research)
      • Boyer’s reflections in The Undying: The media, research, the Internet, and seemingly everything is telling cancer patients to try different things and to attribute survival on select few factors dependent on choice rather than to look at cancer more broadly at a societal level
Categories
Art Illness in Media

Experiences With Cancer, Captured in Works of Art

SEE MORE ARTWORK HERE
Time-bomb art work inspired by Grace Lombardo’s “Grancer” blog.

Intertwining community, art, and illness: Cancer, interpreted and made visible

  • Done during COVID-19 -> social networking effort by Twist Out Cancer -> program called Brushes With Cancer pairing patients with artists to capture cancer experiences
  • The program also address the fear, anguish, and isolation/loneliness of cancer

Juliet R. Harrison sent me an art object that made the darkness visible. She had gutted the book — cut into its cover, torn out most of its pages — and then sutured it back together with splints, paste, fragmented words and wire. Broken, hollowed and rebound, it concretized the evisceration I had tried to protest.

Susan Gubar, speaking about her cancer memoir being rendered into an art piece.
  • Reflections:
    • Experiences are turned into storytelling which are then made physical through art
    • Transformative capacity of multimedia portrayals
    • Having someone else interpret cancer patients’ stories through art can be therapeutic and illuminating -> the patient can see their own stories and experiences reflected through someone else’ eyes -> the artist, while an outsider to the cancer experience, can act as a mirror to the patient
Categories
Art Illness in Media

A Colon Cancer Survivor Posed As Famous Figures In Incredible Photo Shoot To Obliterate The Shame Of Her Stoma Bag

ACCESS HER PHOTOSHOOT
Sarah Mills posing as Marilyn Monroe while spotlighting her stoma bag.
  • Stigma and shame/embarrassment following installment of stoma bag post-surgery
    • Stoma bag/ colostomy bag: pouch that fits over stoma and collects urine + feces to divert flow from bowel or bladder
  • Mills survived stage 3 cancer and wanted to embrace the outcome of the surgery fully, posing as iconic figures while keeping a spotlight for her stoma bag instead of hiding it

“There’s nothing to be embarrassed about. Yes, it will change your body but it’s not anything that you can’t overcome.”

Mills, https://www.survivornet.com/articles/a-colon-cancer-survivor-posed-as-famous-figures-in-incredible-photo-shoot-to-obliterate-the-shame-of-her-stoma-bag/

  • Reflections:
    • Colon cancer, compared to others, isn’t as talked about or present in media or the larger public conversations.
      • Indignity of symptoms, post-surgery outcomes viewed as embarrassing and awkward to mention
    • When thinking of cancer, people often think of breast, cervical and ovarian cancer and don’t think of cancers of lung, colon, prostate, liver or stomach- deem to be less common and harder to diagnose as intestinal disorders
      • Visibility as important in both medical sphere and non-medical sphere -> representation brings attention and consequently changes
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