Living with Cancer in the Wake of Integrative Care Melissa Atkinson-Graham A DISSERTATION ...

304 Pages·2016·19.46 MB·English

Surviving Oncology: Living with Cancer in the Wake of Integrative Care
Melissa Atkinson-Graham
A DISSERTATION SUBMITTED TO
THE FACULTY OF GRADUATE STUDIES
IN PARTIAL FULFILLMENT OF THE REQUIREMENTS
FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY
GRADUATE PROGRAM IN SOCIAL ANTHROPOLOGY
YORK UNIVERSITY
TORONTO, ONTARIO
DECEMBER 2015

© MELISSA ATKINSON-GRAHAM, 2015
ABSTRACT
This dissertation analyzes the emerging medical field of integrative oncology, attending
to how this approach to cancer treatment unsettles and reconfigures existing biomedical
ideas about bodies and cancer. Informed by twelve months of multi-sited ethnographic
study conducted in the state of California, it examines the attempts made by integrative
practitioners to provide “whole patient care” by incorporating complementary medicines
such as Ayurveda and Chinese medicine into conventional oncology. I suggest that this
approach enacts a kind of sensitivity for how cancer is lived as a disease conditioned by
emotional, psychological, social, and environmental factors, requiring treatments
attentive to these dimensions.
Throughout this study I grapple with the intentions of integrative oncologists and the
realities of the political economy of medicine and insurance in the United States that
leaves integrative care out of the reach of most people, producing a situation where
many are strained to imagine different ways of surviving oncology. At the core of this
project is a concern for what it means and what it takes to live well with cancer in
biomedicine.
i! i
ACKNOWLEDGEMENTS
How fortunate am I to find that I have more gratitude to express than space to contain it.
For each of you who shared your experiences, folding me into your lives, and connecting
me to concerns that merged into my marrow, thank you.
For all of you who have shared tables with me in seminar rooms and kitchens, keeping
me buoyed and buoyant with your companionship, your encouragement, your patience,
and your care, thank you. I am enduringly grateful that the researching and writing of this
dissertation has brought me closer to the those who accompanied me into this process,
while also creating the conditions for new forms of incredible fellowship that now stretch
across coasts and continents.
For every stroke of pen and key made on these and the other pages that brought me to
this place of acknowledgement, thank you Natasha Myers, Maggie MacDonald, and
Kenneth Little. To have held my ideas in their crudest form with such kind regard for
what they could be has meant everything to me. Your unwavering confidence and care
as mentors made all of this possible.
Thank you also to Teresa Holmes, Zulfikar Hirji, Daphne Winland, Shubhra Gururani,
Carlota McAllister, Albert Schrauwers, Karen Rumley, Aryn Martin, Michelle Murphy,
Joseph Dumit, Marisol de la Cadena, Mario Blaser, Suzana Sawyer, Tim Choy, and
Tanya Richardson for providing advice and guiding me through so many of the formative
moments that shaped this work.
I am also beholden to The Social Science and Humanities Research Council of Canada
(SSHRC), the Department of Anthropology at York University, and Science and
Technology Studies at UC Davis for generous financial support of this research.
i! ii
TABLE OF CONTENTS
Abstract ………………………………………………………………………………… ii
Acknowledgements …………………………………………………………………… iii
Table of Contents……………………………………………………………………… iv
vi
List of Figures …………………..………………………………………………….….
vii
Preface………………………………………………………………………………..…
1
Introduction: Surviving …………………………………………………………..……
16
Biomedical Conventions…..…………………………………………..……..
19
Integrative Oncology………………………………………………….………
Methodology …………………………………………….……………………. 25
Frontiers of Practice ………………..……………………..…………………. 30
States and Stories of Sensitivity .…………………….……….……………. 36
Outlines ……………………………………………………………………….. 40
Chapter One: Second Opinions …………………………………………………….. 43
Berdine ………………………………………………………………..………. 46
David…………………………………….…………………………………….. 52
Donal ….………………….……………………….………………………….. 61
Felix …………………………..……………………………………………….. 70
After Oncology …………………….………………………….……………… 74
Incorporations ……………………………………….……………………….. 76
Chapter Two: Machinations …………………………………………………………. 81
Go Figure ……………………………….………………………………..…… 87
Mechanical Matters ……………….…………………………………………. 98
The Command of Evidence ……….………………………………………… 100
At What Cost? ………………….…………………………………………….. 112
Disturbing Evidence …………………………………………….……………. 120
Rewiring …………………………………..…………………………………… 127
Choice ………………………………………………………..……..…………………. 132
Chapter Three: Sensitivity…….……………………………………………………… 141
Contact………………….……………………………..………………………. 147
Weil of Fortune ……………………………………………………………….. 149
Programming Possibility …………………………………………………….. 154
Integrative Instruction ……………………………….……………………….. 158
The Whole Difference ….…………………………………………………….. 164
Insensitivity ………..………………………………………………………..…. 173
Sensitizing Practice ……………..……………………………………………. 179
Chapter Four: Treatment ……………………………………………………………… 180
Convention …………………………………………………………………….. 190
Careful Stories ……………………….………………………..………………. 199
Living On……………………..……………………….………………………… 203
Integrative Responses ………………………………………………………… 2 08
Politics and Care………………….…………………………….……………… 212
i! v
Body ………………….………………………………………………………………..… 216
224
Chapter Five: Alternatives ………………….………………………………………… 227
What’s in a Name? …………………………………………………………… 233
Magic and Medicine ………………………………………………………….. 237
Complementary and Integrative Medicine …………………………………. 246
Alternatives Matter …………………………………………………………… 254
Potential ……………………………………………………………………….. 258
Toward an Anthropology of CIM-AM……….………………………………..
261
Conclusion: Signals ……………………………………………………..……………. 268
Implications …………………………………………………………………… 272
Considerations …………………………………………………………..…… 274
Complications …………………………………………………………………
References ……………………………………………………………………………. 276

v!
LIST OF FIGURES
Figure 1: Installation of Oncology on Canvas …………….……………………….. 5
Figure 1.2: “Transition” ………………………………….…………………………… 11
Figure 2: PPACA Chart …………………………….………………………………… 88
Figure 2.1: ASCO Connection cover ………….……………………………………. 114
Figure 3.0: A Sketch ……………………….…………………………………………. 193
v! i
PREFACE
I’ve been researching cancer for five years.
This work started with a phone call from my mum on a balmy September afternoon. It
then grew slowly, eluding recognition.
It took me several years of obsessing with the modelling of cellular life in the health
sciences before realized that cancer was integral to what I cared about—a necessary
companion. But on that balmy afternoon in 2009, the only research terms I had were
diagnostic. Mantle cell lymphoma. A rare form of B-cell non-Hodgkin lymphoma,
predominantly diagnosed in men—the identification of which followed all too closely on
the heels of the treatment my father had just finished for a carcinoma on his adrenal
gland. Over the course of my first semester as a doctoral student, the pungent smell of
disinfectants and unwashed hair, the ghostly traces of medical tape on arms and clavicles,
the rhythmic clicks of infusion pumps, and the groans of vinyl infusion chairs refusing to
recline were transferred from one parent to the other.
I spent hours at her bed, and hours in Chrysler mini vans driven by retired auto-repair
mechanics who volunteered as couriers for the Canadian Cancer Society. With each trip
between the county and the city, her treatment intensified. She underwent two rounds of
chemotherapy in two different hospitals. When these treatments proved to be
v! ii
unsuccessful in quelling the growth of her tumor, she was asked to participate in a
clinical trial testing an experimental combination of chemotherapy and autologous stem
cell transplantation for lymphoma patients. As I read about clinical trials for my first
comprehensive exam, I learned that she was the perfect experimental candidate—naive to
pharmaceuticals, relatively young, and in good health prior to diagnosis (Petryna 2009;
Dumit 2012). My reading lists became a kind of syllabus for supporting my mother
through treatment—a way of understanding the daily negotiations with her oncologists,
the trial coordinator, and the hospital pharmacists. These texts provided me with language
and critical insight, enacted in moments where I pressed for clarity on how her tissues
were going to be used were she to consent to donation, when I urged her to ask about the
side effects of the treatment, and as I pushed to find subsidies or loopholes in her medical
coverage when she received prescriptions for $6,000 pharmaceuticals.
Throughout the nineteen months of aggressive interventions required for a disease found
in its fourth stage, I made fieldnotes. I wrote when I realized radiation was being used as
a last ditch, but altogether cosmetic application. I inscribed my frustrations after finding,
without notice, that she had been moved into isolation, having contracted pathogenic
Staphylococcus aureus from her extensive hospital stay. I jotted down what it felt like to
watch her as she pressed her tear soaked face into a swatch of fabric she was
embellishing after her containers of seed beads collided with the speckled tile of the
oncology ward, her hands too sore from the transplant therapy to twist their lids shut—
the unwarranted reaction of the nursing staff that made it seem as though those little
v! iii
spheres were the most disruptive presence in the room. I made note of when she insisted
that I be concerned about my classes, rather than her condition, and I filled pages after the
immobilizing scrimmage which ensued when a resident read remission on a CT scan
where it actually, acutely, decried unabated multiplication—etching to paper the way the
atmosphere of her oncologist’s consultation room thinned completely in the moment of
correction. The gasps for air she and I each uttered. The apology she never received.
What I haven't written about were the days before her diagnosis. The summer prior to her
becoming an oncology patient, she didn't smile. There were days she didn't feel like
painting, even when we had packed our oils and easels and driven to the highest point in
the county—a spot which revealed the anatomy of the escarpment as a body of limestone
bones, white cedar musculature, and radiant azure skin, gently curved, and often
cloudless. She didn't ride her bike, or walk to the library. She spent many of those days
wearing the arms of her chair with worry, hand rested on her abdomen—a comportment
I’d never seen. Sometimes I would catch her wincing, and if asked, she would
disregarded the pain as something to do with dinner.
I can only now write about her belief that feeling something amiss in her body was an
insubstantial complaint to bring to a physician—the insensitivity she expected to receive.
I now have space to detail that she felt her cancer might respond to unconventional
treatments, despite her oncologist’s insistence on staying the conventional course. I am
able to describe and sit with the story she told me just days before Christmas when we
i! x
were seated in the basement level waiting room of the radiation clinician at the Princess
Margaret Hospital in Toronto. She recounted a vision which revealed the cancer nested
deep in her belly as a bright ball of heat. Having seen this, she felt that the ionizing rays
of this treatment were making it grow. She took from the dream that the treatments
weren’t going to work—that each, all along, had been the wrong temperature. She felt
that if she could only freeze the cancer, she might be free of it. Eventually ice was used
therapeutically. I fed it to her, piece by piece, in an attempt to abate the thirst she felt as
her organs began to fail.
…
The experience of shouldering my mother throughout the many interventions she endured
left me with a series of questions concerning how the treatment of her cancer could have
been different. It also left me with a container for this research—a story that holds
together many of the tensions, struggles, and embodied experiences that were later told to
me by those I became close to throughout my fieldwork—a story that began to unfold for
me at the end of her life, in the company of her ghostly white skin, her eyes without
lashes, her body whittled down by half, and the wonder for how it was that something
different wasn’t done.
But there were attempts. My siblings and I insisted that she seek care from practitioners
who could help her through chemotherapy and eventually radiation. We would send
emails to one another with links to journal articles and websites outlining complementary,
x