Cancer Survivorship at the Intersections of Care and Personhood

ABSTRACT

Surviving colorectal cancer following ostomy surgery with an intestinal stoma presents numerous challenges to the cultural category of full adult personhood. The foremost is managing unpredictable bowel activity. The technical management of the ostomy facilitated by biomedical specialists, is essential for personhood realignment. This article focuses on how some female long-term cancer survivors manage and adapt to this new fecal habitus by mobilizing various assemblages of care – receiving care, continuing to provide particular gendered forms of care, and returning to caregiving roles. These interdependent practices of care realign personhood, or at the very least, minimize the assaults that having an ostomy presents to the cultural category of full adult personhood.

KEYWORDS:

• United States
• cancer survivorship
• care
• gender
• lifecourse
• personhood

Acknowledgments

The Institutional Review Boards of both KPNC and KPNW approved all study materials and protocols. I am extremely grateful to the co-editors of the special volume—Narelle Warren and Dikaios Sakellariou — for seeing the potential in a very rough first draft. Your feedback (and patience!) really helped me navigate the story of care and personhood. Lenore Manderson’s work in this arena has been so important and inspirational; thus, it was an honor to work with her on the final versions. Many thanks to my co-authors for their mentorship and guidance, Chris Wendel for his assistance with all of my data requests, and Mary Wagner for being the supreme human that she is, and for all of the support she has provided over these many years. I would also like to thank the anonymous reviewers for making this a stronger article. JC, I cannot thank you enough for putting me back together every time I am rent; I love you always. My deepest thanks, however, go to the 30 women who allowed me the great privilege of listening to their adversities while also showing me how they found a way to their personhood “home.”

Notes

1. Some leading health organizations recommend avoiding disease-based labels when referring to patients such as “epileptics” and “diabetics” believing that the label may be detrimental to patient self-management and can be stigmatizing (Ogden and Parkes 2013). The United Ostomy Association of America (UOAA), an advocacy committee that produces many educational resources for individuals living with an ostomy, conducted a survey with its members to ascertain the preferred nomenclature that the committee should use in their educational materials, e.g., “a person living with an ostomy” versus “ostomate.” While there was wide support for the use of the word ostomate, The UOAA stated that they would continue to use the term “person living with an ostomy”, which someone like Laura would likely appreciate as she does not want to be solely identified by her condition.

2. Many thanks to Hughes and colleagues (2005) for their mention of this beautiful poem in relation to excrement and care. It fit so perfectly with my findings I could not resist using a longer passage when talking about how attending to the polluting substances of a spouse’s body is perhaps the one of the greatest expressions of love and care.

Additional information

Funding

This research was funded by a Minority Supplement grant awarded to the first author by The National Cancer Institute (CA 106912-02S1, parent grant CA 106912)

Notes on contributors

Michelle Ramirez

Michelle Ramirez, PhD, MPH is associate professor of Anthropology at the University of the Sciences in Philadelphia. Her writing and research focuses on the intersection of gender and healing. Email: [email protected]

E. Amy Janke

E. Amy Janke, PhD is associate professor of Psychology and Health Policy and Chair of the Department of Behavioral and Social Sciences at University of the Sciences. A clinical health psychologist by training, her research interests are at the intersection of health behaviors, psychosocial risk factors, and chronic disease, with a recent focus in the area of pain and obesity. Email: [email protected]

Marcia Grant

Marcia Grant, PhD, RN, DNSc, FAAN is professor Emeritus from City of Hope Cancer Center, in Duarte, California. Dr. Grant continues to consult on oncology survivorship research, with an emphasis on the quality of life in patients who have ostomies. She currently resides in Oracle, Arizona and can be reached at [email protected]

Andrea Altschuler

Andrea Altschuler, PhD is a sociologist/practice specialist at Kaiser Permanente’s Division of Research in Oakland, California. Her research focuses on patients’ experiences and outcomes, especially for individuals with diagnoses of cancer and diabetes. She also studies organizational innovation and its impact on patient care. Email: [email protected]

Mark Hornbrook

Mark Hornbrook, PHD is adjunct Senior Investigator at the Kaiser Permanente Center for Health Research in Portland, Oregon. A health economist, his writing and research focuses on determinants of costliness of health care, economic effects of health behavior and health care interventions, especially for cancer patients in organized health care delivery systems. Email: [email protected]

Robert S. Krouse

Robert S. Krouse, MD, MS, FACS is professor of Surgery at the University of Pennsylvania and Chief of Surgical Services at the Corporal Michael J. Crescenz Veterans Affairs Medical Center. As a surgical oncologist, Dr. Krouse’s research interests have predominantly focused on cancer survivorship, including health-related quality of life.