NARRATIVES OF PERCEIVED SOCIAL SUPPORT AS A MEDIATOR FOR INCREASED
COPING RESOURCES AND OPTIMISM AMONG CANCER PATIENTS AND SURVIVORS
by
TAVARI TAYLOR BROWN
A Dissertation Submitted to the Faculty
in the Counselor duration and
Supervision Program of Penfield College
at Mercer University
in Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
Atlanta, GA
2014
COPYRIGHT 2015 UMI Number: 3662748
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TAVARI TAYLOR BROWN
ALL RIGHTS RESERVED ACKNOWLEDGEMENTS
Thank you, Terrence Dominic Brown for nearly five years of evenings alone, waking up at 2:00 a.m. wondering why your wife is in another room reading or typing under dim light, and for a commitment to our marriage.
Thank you, Talia G. Brown for being the best fetus, neonate, and daughter in the history of the world ever known to mankind!
To “Dee,” the pink-ribbon binding four out of five narratives. We miss you so! Thank you for sharing your wonderful light, life, and “effervescence” as one interview participant stated. Thank you for making the difference in so many lives while you were here. Munchie loves you!
Thanks to the 2010 Counselor Education and Supervision cohort, Drs. W. David Lane, and Arthur Williams for your support and belief in my ability to complete this process. I would like to express my deepest appreciation to Dr. Karen Swanson for answering her phone in 2012 and allowing me to enroll in her Qualitative Analysis class with two hours notice. Thank you for sharing your time, stories, and experience with me. My thanks goes to Dr. Donald Redmond for encouraging me to part-take in a qualitative study, opening up the world of narrative, and for always being so honest and supportive. I would like to thank Drs. Renee Ned and Theresa Reese for jumping into this process with little notice or explanation beyond openness to the process. Finally, this dissertation contains the words, emotions, and medical details of five individuals who generously shared their most intimate experiences with cancer and beyond. I offer you my most sincere gratitude and share your hope that your personal stories will help improve public and professional understanding of what it means to be a survivor and thereby enhance the quality of care that health professionals provide to patients. TABLE OF CONTENTS
Page ACKNOWLEDGEMENTS...... iv
ABSTRACT...... xiii
CHAPTER
1. INTRODUCTION TO THE STUDY...... 1
Narrative Therapy ...... 3
Narrative Methodology ...... 4
Purpose of Study ...... 7
Theoretical Framework...... 8
Rationale for the Study ...... 10
Definition of Key Terms ...... 12
Assumptions ...... 13
Limitations ...... 15
Delimitations ...... 16
Summary...... 16
2. REVIEW OF RELATED LITERATURE...... 18
Self-Efficacy...... 18
Control ...... 19
Human Agency ...... 20
Coping...... 21
Adaptation ...... 22
v TABLE OF CONTENTS (Continued)
CHAPTER Page
Emotional Expression ...... 22
Coping Styles...... 23
Coping Support...... 26
Social Support...... 26
Self-Regulation thru Social Support...... 27
Unsupportive Behaviors...... 31
Coping as a Couple...... 33
Child and Adolescent Adjustment ...... 35
Supportive Others ...... 36
Multicultural Perspectives ...... 38
Implications ...... 41
Summary...... 43
3. METHODOLOGY...... 46
Narrative Phenomena ...... 46
Narrative Researcher ...... 46
Phenomenology ...... 49
Experience ...... 49
Perception ...... 50
Problem and Purpose Overview ...... 52
Research Question ...... 53
Data Collection ...... 55
vi TABLE OF CONTENTS (Continued)
CHAPTER Page
Analysis ...... 56
4. PARTICIPANT 1...... 58
Introduction ...... 58
Individual Themes ...... 58
Theme 1 Support...... 58
Friends and Neighbors ...... 60
Physicians and Hospital Staff...... 62
Theme 2 Coping and Optimism ...... 62
Theme 3 God, Church, and Religion ...... 64
Theme 4 Group Support...... 64
Passion Topic: Building a Network ...... 66
Survival Philosophy ...... 67
5. PARTICIPANT 2...... 68
Introduction ...... 68
Individual Themes ...... 68
Theme 1 Support...... 68
Theme 2 Coping and Optimism ...... 69
Theme 3 Efficacy...... 70
Family Advocacy ...... 70
Self-Advocacy ...... 71
Acceptance ...... 72 TABLE OF CONTENTS (Continued)
CHAPTER Page
Passion Topic: Insurance ...... 72
Survival Philosophy ...... 74
6. PARTICIPANT 3 ...... 75
Introduction ...... 75
Individual Themes ...... 75
Theme 1 Support...... 75
Family...... 75
Lack of Family Support...... 76
Friends and Neighbors ...... 77
Loss of Friends ...... 79
Support Group and Cancer Wellness ...... 80
Confidence in Physicians ...... 81
Theme 2 Coping and Optimism ...... 82
Theme 3 Work...... 83
Employer...... 83
Co-workers...... 84
Theme 4 Treatment Challenges ...... 84
Passion Topic: Lack of Information ...... 85
7. PARTICIPANT 4 ...... 87
Introduction ...... 87
Individual Themes 87 TABLE OF CONTENTS (Continued)
CHAPTER Page
Theme 1 Support...... 87
Significant Other ...... 88
Friends ...... 88
Theme 2 Coping...... 90
Guarded and Defenses ...... 91
Fear...... 91
Depression ...... 92
Negative People...... 92
Acting Out...... 92
New Identity ...... 93
Optimism...... 94
Theme 3 God, Church, and Religion ...... 94
Theme 4 Life long treatment ...... 94
Passion Topic: “I’m So Sorry” ...... 95
Survival Philosophy ...... 95
8. PARTICIPANTS...... 96
Introduction ...... 96
Individual Themes ...... 96
Theme 1 Support...... 96
Extended Family...... 96
Friends ...... 97 TABLE OF CONTENTS (Continued)
CHAPTER Page
Spouse...... 98
Theme 2 Coping...... 99
Theme 3 Efficacy...... 101
Daughter With Cancer...... 101
Recurrence of Ally’s Cancer ...... 102
Daughter 1...... 103
Daughter 2 ...... 104
Theme 4 God, Church, and Religion ...... 105
Theme 5 Motherhood ...... 107
Passion Topic: Rearing a Child with Special Needs ...... 109
9. RESULTS...... I l l
Introduction ...... 111
Clusters...... 113
Cluster 1: Community/Extrinsic ...... 114
Family...... 114
Friends and Neighbors ...... 114
Confidence in Physicians ...... 115
Groups...... 116
Lack of Support/Loss of Friends ...... 116
Cluster 2: The Self/Intrinsic ...... 117
God/Faith ...... 117
x TABLE OF CONTENTS (Continued)
CHAPTER Page
Acceptance/Optimism ...... 117
Philosophy...... 118
Coping Style/Defense ...... 119
Life Long Treatment ...... 119
Cluster 3: Issues Bigger Than Self...... 119
Advocacy ...... 120
New Identity/Self-Discovery ...... 121
Analytic Themes ...... 121
The Machine ...... 122
The Bubble...... 122
Composite Summary...... 123
10. DISCUSSION, CONCLUSION, AND RECCOMENDATIONS...... 124
Discussion ...... 124
External ...... 124
Internal ...... 126
The Self...... 126
Adaptation Leading and Advocacy ...... 127
Coping Style...... 127
Coping Support...... 129
Supportive Others ...... 130
Bigger Than Self...... 130
xi TABLE OF CONTENTS (Continued)
CHAPTER Page
Conclusion ...... 131
Recommendations ...... 131
Implications ...... 131
Final Note ...... 133
REFERENCES...... 135
APPENDICES...... 147
A. PARTICIPANT 1: INDIVIDUAL THEMES...... 148
B. PARTICIPANT 2: INDIVIDUAL THEMES...... 150
C. PARTICIPANT 3: INDIVIDUAL THEMES...... 152
D. PARTICIPANT 4: INDIVIDUAL THEMES...... 154
E. PARTICIPANT 5: INDIVIDUAL THEMES...... 156
F. PARTICIPANT 1: FULL TRANSCRIPTION...... 158
G. PARTICIPANT 2: FULL TRANSCRIPTION...... 171
H. PARTICIPANT 3: FULL TRANSCRIPTION...... 181
I. PARTICIPANT 4: FULL TRANSCRIPTION...... 195
J. PARTICIPANT 5: FULL TRANSCRIPTION...... 206
K. IRB APPROVAL...... 222
L. INFORMED CONSENT...... 224
xii ABSTRACT
TAVARI TAYLOR BROWN
NARRATIVES OF PERCEIVED SOCIAL SUPPORT AS A MEDIATOR FOR INCREASED
COPING RESOURCES AND OPTIMISM AMONG CANCER PATENTS AND SURVIVORS
Under the direction of DONALD REDMOND, Ph.D.
Results observed throughout the literature indicate that satisfaction with social support
accounts for a statistically significant portion of the variance in patient hope and affect (Crothers,
Tomter, and Garske, 2005). The purpose of this narrative-based study is to explore the ways in
which cancer patients and survivors perceive the role of social support in mediating increased
coping and optimism. Using the following question as a guide, “who or what has been most helpful throughout your cancer journey,” the goal is to gain an in-depth understanding of the cancer journey as experienced by five survivors. Individual interviews were conducted using phenomenological methods of inquiry as a guide. Core themes from the significant statements were extrapolated along with the corresponding meaning units; leading to a composite summary, which captured the essence of the cancer experience.
A phenomenological study of cancer patients and the impact of social support on coping has implications in the delivery of health care. Utilizing constructs from Social Cognitive
Theory (SCT), this study explores how perceived social support impacts cancer patients’ and survivor’s stories regarding their ability to cope. This study acknowledges the magnitude of social support, coping, and efficacy found in the current literature and adds the importance of looking beyond internal and external factors to examine additional challenges faced by cancer survivors that have not been documented in the current research. Participants in the study discussed extrinsic factors such as family, friends, physicians, support groups, work, and lack of support as having an impact on their cancer journey. Intrinsic factors mentioned include acceptance, God, faith, and religion, optimism, philosophy, coping style, defenses, identity, life long treatment, and efficacy. A primary finding of this study is the impact of issues beyond treatment and diagnosis that affect the individual’s ability to recover. Counselors and oncology social workers can better assist clients in their ability to identify support networks, develop assertiveness skills, and identify challenges that have a direct impact on treatment adherence.
Future narrative studies with cancer patients could focus on coping skills and the effects of participating in traditional therapeutic support groups versus groups centered on a specific activity.
xiv Running head: CANCER SOCIAL SUPPORT NARRATIVES 1
CHAPTER 1
INTRODUCTION
When someone has been diagnosed with cancer, it affects all aspects of his or her life;
physical, emotional, spiritual, and social. A cancer diagnosis is often described as traumatic, life
altering, and linked with high levels of depression and anxiety (Howard, Boottorff, Balneaves, &
Grewal, 2007). The shock of the diagnosis, existential concerns regarding life, death, and the
meaning of life, the burden of treatment, changes to the body and self-esteem; all present a
challenge to coping and adaptation (Kissane, Grabsch, Love, Clarke, Bloch, & Smith, 2004).
Emotional distress is exemplified by physiological symptoms of nausea, pain, and fatigue, a
consequence of the disease, treatment side effects, and social stress. Kissane and colleagues
(2004) observed a high prevalence of adjustment disorders among a quarter of a sample population. Individuals who have been diagnosed with a chronic disease face numerous threats and challenges, including pain, disfigurement, impaired physical function, and changes in future perspectives (Bisschop, Kriegsman, Beekman, & Deeg, 2004). Although the illness related cause for distress might vary, distress rates are similar among individuals with early as well as advanced disease (Kissane et al., 2004). The safety and normalcy of everyday life are threatened.
A sense of security and stability is replaced with fear and uncertainty. Although the majority of individuals diagnosed with cancer will not experience symptoms indicative of a chronic mental illness, many will report high levels of distress impacting his or her quality of life (Cicero, Lo
Coco, Gullo, & Lo Verso, 2009). It is not uncommon to find cancer patients who are temporarily prescribed anti-depressants or anxiolytics. Psychosocial adjustment is an important construct within psychosocial oncology research (Cicero et al., 2009). Running head: CANCER SOCIAL SUPPORT NARRATIVES 2
There is often a persistent fear of death and recurrence. Due to their fears, many patients
feel the need to isolate themselves, withdrawing from friends and family members. The absence
of social support is often attributed to a decrease in immune function and increased disease
progression (Jones, Hadjistavropoulos, & Sherry, 2012). Support is a protective factor in the
lives of cancer patients. Cancer changes the perspective of each individual it affects, creating a
need to bring new meaning to one’s existence (Carlick & Biley, 2003). A cancer diagnosis is a
significant life event for both the patient and his/her family (Howard et al., 2007). Nearly two-
thirds of adults diagnosed with cancer today will be alive in five years (Jones et al., 2012). The
growing population of cancer survivors represents a clear challenge for clinicians and researchers
to look past the search for a cure and address the multifaceted needs of those living with cancer
beyond the diagnosis (Alfano & Rowland, 2006). Patients must begin piecing together their lives
and build stronger social and emotional skills. Illness cognitions are influenced by the
individual’s emotional state; their emotional state is influenced by their perceptions of the illness
(Dempster, McCorry, Brennan, Donnelly, Murray, & Johnston, 2011). Cancer is not the only event in an individuals’ life, and it cannot be processed in isolation (Van Der Molen, 2000).
Psychosocial coping resources protect against depressive symptoms in people with and without chronic disease (Bisschop, Kriegsman, Beekman, & Deeg, 2004). The human need to make sense of life is the driving force behind the development of healthy coping skills (Carlick &
Biley, 2003). Social support contributes to the development and maintenance of self-control, whereas interpersonal conflict is related to poor emotional regulation (Willis & Bantum, 2012).
At the end of active treatment (post-surgery, chemotherapy, and radiation), most patients are relieved, yet many patients report being unprepared to manage the long-term and chronic effects of cancer as well as the methods used to manage the disease. These long-term effects Running head: CANCER SOCIAL SUPPORT NARRATIVES 3 include pain and fatigue, worry of recurrence, and adverse health conditions (Alfano & Rowland,
2006). Being disease-free does not mean the patient is free of the disease, or as one survivor stated, “it ain’t over when it’s over” (Alfano & Rowland, 2006). The stories told by cancer survivors are a powerful window into the ways in which people deal with this pervasive disease.
Narratives have been shown to be a medium through which meaning and knowledge can be developed.
Narrative as Therapy
The word “narrative” carries contextual meaning and is used in varying ways by multiple disciplines; most often it is synonymous with the word “story” (Riessman, 2008, p. 3). When using narratives in counseling, the counselor and client can look for multiple themes, goals, or intentions that create a pattern in the story (Brown, 2002). A narrative approach is often used to help the client objectify and externalize his or her problems in order to gain insight, understanding, and establish meaning (Carlick & Biley, 2003). Narratives are simultaneously a way of knowing and a primary means of accessing human experience (Polkinghome, 1988).
Through narratives, the individual shares his or her life story and cultivates self-knowledge
(Carlick & Biley, 2003). Although a cancer diagnosis can be stress inducing, testing the limits of the individual’s coping skills, patients frequently report beneficial outcomes as a result of diagnosis and treatment (Willis & Bantum, 2012). An awareness of our mortality can be constituted as a trauma (Ringstrom, 2010). Narratives are a channel opening a space to discuss different reasons and explanations for illness (Calick & Biley, 2003). Stories that recap difficult times promote a search for meaning and enable connection with others (Riessman, 2008).
Similar to studies of post-traumatic growth, many cancer patients find greater meaning in their lives and begin reevaluating priorities as a direct result of his or her diagnosis. Narratives reduce Running head: CANCER SOCIAL SUPPORT NARRATIVES 4
the number of observed counter-arguing behaviors and cognitive rehearsal, which may increase
acceptance and motivation to act on health information in populations most adversely affected by
disparities (McQueen, Kreuter, Kalesan, & Alcaraz, 2011). Carlick and Biley (2003) refer to a
person who approaches his or her story as one of a transformational journey to something better
as a “quest narrative” (p. 313). Narratives immediately produce stronger cognitive and affective
responses (McQueen et al., 2011). The degree to which individuals use emotional expression or
suppression to cope with his/her cancer experience appears to significantly influence adjustment
trajectories (Owens, Giese-Davis, Cordova, Kronenweter, Golant, 2006).
Narrative as Methodology
Qualitative research methods have been useful in understanding illness experiences
(Howard & Bottorff, 2007). Phenomenology techniques rely on conscious knowledge; what is
observed through perception, sensing, or knowledge of one’s immediate experience (Moustakas,
1994). Phenomenological research methods are shaped according to the intrinsic demands of the
psychological realities of human beings (Wertz, 2005). Using stories to improve the public’s health prompts new research questions and applications (McQueen et al., 2011). Several factors contribute to the cultural shift in narrative acceptance including positivist modes of inquiry, the popularity of memoir based literature, the identity movement by previously marginalized groups, as well as the emphasis on individual experience in counseling theory (Riessman, 2008).
Experience is a storied account (Sandelowski, 1991). A deeper understanding of cancer narratives will have a direct impact on care. Cancer creates a need to bring new meaning to one’s life; narratives are a medium through which meaning and knowledge can be developed (Carlick
& Biley, 2004). Additional research is needed to compare the effects of different narrative formats (McQueen et al., 2011). Comparing first-person stories, testimonials, fictional stories, Running head: CANCER SOCIAL SUPPORT NARRATIVES 5
and anecdotes through the use of different communication modalities (print, audio, or video)
would assist in our ability to parse out the indirect effects of self-efficacy, coping, and social
support.
Hinyard and Kreuter (2007) suggest that a combination of narrative and statistical
evidence may be most effective, but we still need to understand how each format influences
attitudes and behavior to effectively combine information and maximize communication
(McQueen et al., 2011). According to McQueen and colleagues (2011), numerous studies have
examined the persuasive effect of narrative versus non-narrative information, yet comparison is
challenging due to differing definitions of terms, narrative and persuasion. Vividly presented
information is generally considered more persuasive and has a greater impact on judgments than
non-vivid information (Taylor & Thompson, 1982). Narratives have several unique advantages
over traditional informational approaches and are likely to enhance health communication for
cancer prevention and control (McQueen et al., 2011). The narrative is not a reproduction of
events, but a construction that the teller thinks the listener would like to know (Brown, 2002).
Narratives do not only describe what the individuals does in the world, it also describes the
impact of the environment on the individual (Riessman, 2008). Emotionally provocative
narratives may increase recall (McQueen et al., 2011).
Across helping professions, clinicians are moving away from a paradigm of normal
behavior and toward a search for individual meaning (Launer, 1999). Oral histories resonate with
the general public and are often memorable because they allow the speaker and listener to connect through common linkages in the human experience. The narrative approach to mental health is concerned with cultivating an interaction between a patient and clinician to construct a story in a way that leads to the sharing of knowledge and information (Launer, 1999). Within Running head: CANCER SOCIAL SUPPORT NARRATIVES 6
the text, the researcher and participant are inseparable (Clandinin & Connelly, 2000).
Understanding the process and mechanisms through which stories influence health-related
decisions and actions is critical to maximizing their effectiveness and developing appropriate
applications for use in practice settings (McQueen et al., 2011). In counseling, narrative
techniques allow the clinician to listen as the patient provides a coherent view of his or her
personal history, and permits the clinician to ask questions that help the patient explore new
meaning (Launer, 1999). As Adrienne Rich (1978) wrote, “the story of our lives becomes our
lives” (p. 34).
People should be understood as individuals within a social context. Cancer patients of
varying ages, marital status, employment status, and educational levels or with different
treatment processes could have different experiences of social support (Makebe & Hull, 2000).
No two experiences with cancer are the same and neither is the experience of living with others
as they face the disease. The individual is always situated within a social context (Clandinin &
Connelly, 2000). Social support is an important construct because it has been linked to a wide range of health outcomes (Lakey & Orehek, 2011). The presence of adequate social support is associated with a reduction in anxiety symptoms following cancer diagnosis and treatment, yet there is a lack of research on the role that social support has on mitigating health anxiety (Jones et al., 2012). Perceived support is consistently linked with improved mental health outcomes, typically associated with supportive actions that are credited with buffering stress (Lakey &
Orehek, 2011). Perceived support is relational (Lakey, Cohen, & Neely, 2008). Social support has been examined extensively in people with cancer, but the literature has focused primarily on women with breast cancer (Makabe & Hull, 2000). This study bares witness to the stories of Running head: CANCER SOCIAL SUPPORT NARRATIVES 7
differing cancer patients with the hope of gaining a better understanding of the experience
through narrative.
Purpose of the Study
The purpose of this narrative- based phenomenological study is to explore the ways in
which cancer patients and survivors perceive the role of social support in mediating increased
coping and optimism. This study hopes to encapsulate, observe, record, and understand the
storied work that individuals utilize when chronic illness disrupts his or her expected life course.
At this stage in the research, perceived social support is defined as the individual’s
phenomenological evaluation of helpfulness from friends, family, caregivers, and community.
The following research question will guide this inquiry: Who or what has been the most helpful
throughout your cancer journey?
This study highlights a growing awareness of the role that narratives can play in helping
cancer patients cope with their illness. Narratives are accounts from individuals that portray his
or her subjective experiences, including a sense of intention, explanation, and emotion
(Kaufman, 2000). Narratives can be used to objectify and distance one's self from problems in
order to gain understanding, establish meaning, develop greater self-knowledge, and decrease emotional distress. Carlick and Biley (2003) highlight the impact of narrative techniques in medical care on increased coping skills in patients. Narrative serves as the phenomena to be studied, whereas phenomenology is the method of study. Either can be utilized as an expansive tool articulating how individuals construct meaning and navigate his/her world (Kaufman, 2000).
Knowledge of one’s diagnosis does not in and of itself foster open conversations about the emotional impact (Makebe & Hull, 2000). This study will demonstrate that relational narratives can help patients cope with their diagnosis and has implications for the use of phenomenology Running head: CANCER SOCIAL SUPPORT NARRATIVES 8
procedures in hospitals, outpatient facilities, and community health settings. The aim is to
capture the essence of the experience through meanings that cancer survivors assign to the
experience (Moustakas, 1994).
Theoretical Framework
Informed by the ontology and epistemology of relational narrative, this study is built
upon social cognitive theory. Historically, there have been few clinically useful theoretical
models of adjustment to cancer (Brennan, 2001). Coping theorists have focused largely on
behavioral strategies that people employ to negotiate the demands posed by an adverse life event
and to mitigate the negative emotions generated by the change or threat (Brennan, 2001). The
relational narrative is epistemological. Experience is a key term in this inquiry.
Phenomenological studies are co-created and focus on a way of being and a method of inquiry.
Understanding the meaning the individuals assign to the experience is the primary goal of phenomenological knowledge (Moustakas, 1994). Experience is both social and personal; both are always present (Clandinin & Connelly, 2000). Carl Rogers (1961) once wrote:
Experience is, for me, the highest authority. The touchstone of validity is my own
experience. It is to experience that I must turn, again and again, to discover a closer
approximation to truth as it is in the process of becoming in me (p. 233).
As social beings our thoughts, feelings, and perceptions are directly influenced by social interactions. Unlike coping theory, social cognitive theory focuses on the broader social and cognitive changes required of an individual and his/her social network in the face of specific challenges (Brennan, 2001).
Social Cognitive Theory promotes effective self-management of health habits that keep people healthy throughout their lifespan (Bandura, 2005). Behavior is the outward expression of Running head: CANCER SOCIAL SUPPORT NARRATIVES 9
internal beliefs and emotional state. The central construct of the SCT is perceived self-efficacy,
which Bandura defines as the judgment of one’s ability to organize and execute specific actions
(Mystakidou , Tsilika, Parpa, Gogou, Theodorakis, & Vlahos, 2010). Self-efficacy can predict
outward expressions of behavior. Social Cognitive Theory proposes that beliefs about one’s
abilities influence both thoughts and emotional states (Mystakidou et al., 2010). According to
Bandura (1997), there are four hierarchical predictors of self-efficacy. They are past experiences
with the behavior, vicarious experience, and verbal persuasion and encouragement (e.g. exposure
to supportive role models that often occur in group therapy).
Social Cognitive Transition Theory (SCTT), which is based on social-cognitive theory, is
a psychosocial model that emphasizes the social context of an individual’s experience (Brennan,
2001). The model integrates constructs from coping, social-cognitive, and trauma data. SCTT is
a psychosocial approach that views adaptation to cancer as a psychological process that occurs
over time as the individual and those in his/her social world manage, learn from, and adapt to the
multitude of changes which have been precipitated by the illness and its treatment (Brennan,
2001). This model was chosen for the current study because it emphasizes the social context of
an individual’s personal illness experience and postulates the importance of cognitive and social
dimensions of adaptation to cancer. The SCTT model of adjustment also accounts for the healthy
personal development that is often the result of a cancer experience (Brennan, 2001). Bandura
(1986) highlights five major constructs, vicarious learning, reproduction, self-efficacy, emotional coping, and self-regulatory capability.
This study will focus on emotional self-efficacy, coping, and self-regulation as it is mediated through social support. As social beings our thoughts, feelings, and perceptions are directly influenced by social interactions. People are motivated by social acceptance, approval, Running head: CANCER SOCIAL SUPPORT NARRATIVES 10 and encouragement from their social networks. A high perception of social support will correspond with a narrative that reflects frequent observations of social satisfaction and an articulated belief that the patient has the capacity to cope with life’s challenges. Henry (1995) presented a conceptual framework on the use of storytelling in nursing, reporting that it has therapeutic benefits in cognitive, affective, interpersonal, and personal domains. Cognitive benefits are developed through each story’s ability to impact knowledge and aid problem solving, providing a medium through which emotional catharsis can be established and affective benefits obtained (Carlick & Biley, 2003). A phenomenological design will be applied to help elicit each individual’s narrative and extract the essence of his or her experience. What will emerge is a powerful collection of thematic clusters and rich narratives that illustrate the relational impact of a cancer diagnosis. A narrative based study of cancer patients’ perceptions of social support as it relates to treatment outcomes could be utilized by counselors and oncology social workers and would be of interest to medical journals, narrative therapy journals, health psychology, and narrative medicine.
Rationale for the Study
Previous research has clarified that it is not sufficient to measure the number of supportive individuals who are present in the lives of cancer patients. Supportiveness is uniquely defined through the relationship between the patient and the provider (Lakey, Cohn, & Neely,
2008). The primary focus of research on social support among breast cancer patients to date has been quantitative studies utilizing standardized tools with very specific questions. The few narrative based studies of cancer patients were completed with either an Australia or British population. Little attention has been given to the collective experience of individuals living with cancer or the essence of the cancer experience in the United States. The primary intent of this Running head: CANCER SOCIAL SUPPORT NARRATIVES 11
phenomenological study is to develop a deeper understanding of the ways in which cancer
survivors receive and perceive emotional support. The language of support, how the participants
describe their experiences of support, the words utilized, and tone will reflect feelings of
perceived support. Through a commitment to observation and listening to stories, we honor
individual narratives through baring witness to the commonalities, nuances, and differences.
In a study of personality traits, support satisfaction, and mental health, it was determined
that social companionship played a central role in the mental health status of study participants
(Suurmeijer, Van Sonderen, Krol, Doeglas, Van Den Heuvel & Sanderman, 2005). Having
people to interact with and feeling supported increased mental health outcome. Among a cancer
population, support satisfaction accounted for a statistically significant proportion of variance in
patient hope and affect (Crothers, Tomter, & Garske, 2005) The data concretely describes the
experience of social support for those living with cancer, captures the essence of the
psychological life of the participants beyond previous knowledge, and transcends what the
participants themselves think or know about the topic (Wertz, 2005).
Studies on utilization of care are more informative than a study of health status in
determining who is providing support and what kind of support is being provided (Wasserman,
Bender, Morrissey, Mouw, & Norton 2006). Insights gained from individual stories can be used by patients, family members, and health-care professionals to explore and generate questions regarding pre and post treatment support needs (Dickerson, Alqaissi, Underhill, & Lally, 2011).
Although hope has been identified as an essential construct in measures of perceived quality of life, little direct investigation has been published regarding the role of social support and coping.
The present study aimed to identify the impact of perceived social support on coping resources and optimism for five individuals diagnosed with cancer in the past four years. A qualitative Running head: CANCER SOCIAL SUPPORT NARRATIVES 12 method based on Moustakas’ phenomenology procedures was utilized to determine how perceived social support impacts cancer patients’ and survivor’s stories regarding their ability to cope and maintain optimism through treatment.
Definition of Key Terms
Social support refers to the ability of the individual’s social network to provide the psychological and material resources that will support the person’s ability to cope with stress
(Cohen, 2004). Social support is a relatively stable resource that buffers stress, primarily by influencing appraisal and coping (Lakey & Orehek, 2011). Support typically refers to instrumental, informational, and emotional resources (Cohen, 2004). Perceived social support is defined as the quality of support provided by others. Perception differs from presence. Perceived support is based primarily on the individual’s history of receiving effective enacted support
(Lakey & Orehek, 2011). According to Bandura’s definition, perceived self-efficacy is defined as the individual’s belief in his/her ability to perform at a level that influences the events that affect his/her life (Kohno, Maruyama, Matsuoka, Matsushita, Koeda, & Matsushima, 2009).
Self-efficacy can also be defined as the extent to which one feels capable of making effective decisions about feelings, behavior, and the future (Cieslak, Benight, & Caden Lehman, 2008).
For the purpose of this study, self-efficacy is defined as the individual’s perceived ability to initiate coping resources.
According to Folkman (1984), coping refers to efforts to manage demands, regardless of successful effort and independent of outcome. Coping resources refer to the characteristics of a person, group, or environment that are helpful in assisting with adaptation to stress. Some refer to it as an internal power that can be mobilized in dealing with stressful situations (Weisler,
2006). Coping resources include social, physical, psychological, and material assets, which are Running head: CANCER SOCIAL SUPPORT NARRATIVES 13
evaluated in context with the demands of the situation (Folkman, 1984). Maintaining a positive
focus appears to minimize anxiety and depression symptoms (Dempster et al., 2011). Optimism
describes a cultivated attitude that one believes in the positive resolution of a stressful event. In
particular, people with this mindset will use focused, externalized, and non-persisting terms to
describe his or her situation. Coping resources and social support decrease depressive symptoms
through both a direct and indirect buffering effect (Bisschop et al., 2004). Studies have shown
that patients who are diagnosed with a chronic disease and adopt an optimistic attitude have
improved health status.
A tumor site is where the tumor can be located within the body. Active treatment means
the individual is currently receiving chemotherapy or radiation therapy. The term includes oral
chemo, but excludes follow-up medication. Varies people define survivorship in different ways.
Some argue that one is a survivor upon diagnosis. Others define survivorship as the period
following active treatment. Some people never complete active treatment. For the purpose of this
study, individuals were able to self-identify as survivors. The term patient refers to individuals who are receiving active treatment, but patient and survivor are not mutually exclusive terms.
Assumptions
As a licensed therapist and program manager for a comprehensive cancer wellness program in the southeastern United States, I have observed the impact that social support or a reported lack of support has on individuals who are receiving cancer treatment. Practitioners often assume that patients feel supported by family members who are physically present without explicitly asking about emotional presence. Economic conditions, socioeconomic status, and family structure affect behavior through their impact on the individual’s sense of efficacy, aspirations, and affective self-regulatory factors (Bandura, 2002). Anecdotally, it would appear Running head: CANCER SOCIAL SUPPORT NARRATIVES 14
that individuals who are satisfied with the support they receive from friends, family members,
and their community require less intervention from hospital staff, social services, and health
educators.
In general, I believe that people are bom with the biological tendency to be both self
helping constructivists as well as self-defeating within the context of his or her environmental,
conditioning, and social learning (Ellis & MacLaren, 1998). I take a pragmatic approach to
addressing client’s psychosocial concerns. We are social beings; positive and negative behaviors
are evaluated through social constructs. Normal or appropriate behavior is determined through
relative comparison with others and through a lens of social expectation. We develop our
thoughts about the world and ourselves through our interactions with others in our environment.
People are motivated by social acceptance, approval, and encouragement from their social
networks. We work to establish meaningful connections in our lives, strive for an understanding
of ourselves, and define our roles as it relates to others. Our responses to our social environment
are driven through positive and negative motivators. Positive motivators include both intrinsic
and extrinsic factors such as self-esteem, self-efficacy, and a social environment that promotes
healthy physical and mental development. Negative motivators for change include emotions such
as anger, despair, guilt, and shame. Emotional responses can promote and facilitate change in
either a socially acceptable or a socially deviant direction.
Difficulties arise in our lives as a result of cognition. The way that we think, believe, and
perceive has a direct impact on the way we act, feel, and interact. Internal discord or a poor fit
between the individual and his or her environment leads to mood disorders such as anxiety and
depression. By changing the way we think we conversely change our mind, mood, and perception. According to Greenberger and Padensky (1995), our thoughts, behaviors, moods, and Running head: CANCER SOCIAL SUPPORT NARRATIVES 15 physical reactions are integrally connected. Having a positive or negative outlook on life or a particular situation will impact the physical and emotional outcome. However, positive thinking alone is not the only solution for resolving conflicts and difficulty. Thinking has to be aligned with reality, ability, and access. Cognitive therapists address belief systems that influence the client's thought processes. According to cognitive therapists, people think and act according to their fundamental core beliefs, automatic thoughts, which are the words or images that go through the person’s mind, and intermediate beliefs that exist between the two (Beck, 1995).
Intermediate beliefs are composed of rules, attitudes, and assumptions, whereas core beliefs are often absolutist, rigid, and global ideas about oneself and/or others; automatic beliefs are the most malleable of the three (Beck, 1995). Our emotions, actions, and reactions depend on how we evaluate our experiences in the world (Lazarus, 1998). Our belief systems fuel our emotional interpretations and perceptions of a situation. Thoughts, interpretations, judgments, and diverse goals and beliefs lead to individual differences in reaction to the same environmental conditions (Lazarus, 1998). These expectations greatly affect the individual’s outcome and outlook on life. Individuals make themselves happy, sad, or miserable as a result of their perceptions, attitudes, or self-verbalizations about their interactions with their environment (Ellis
& Harper, 1975). People have a choice in the way they respond to external events. Through socialization we learned certain beliefs, attitudes, and styles of coping, but what we have learned can be modified (Ellis & Harper, 1961).
Limitations
The small sample size was valid and reliable for this study, but could not be generalized to a larger population. In the pursuit of this study it was important to explore the variations in experience and perceptions through rich in-depth narratives. Participants varied in race, gender, Running head: CANCER SOCIAL SUPPORT NARRATIVES 16 age, marital status, education, occupation, cancer stage, treatment status, and tumor site. The study participants were individuals selected for their variations in demographic and medical experiences. Participants varied in their background, but all currently reside in a suburb in the southeast region of the United States. Although all of the participants were survivors, they had diverse lengths of survivorship (1 to 4 years).
Delimitations
A primary strength of this study is its contribution to the literature through resonant narratives of individual experiences. Well-intended family members and medical staff may believe they are helpful and supportive, but if the patient does not feel supported through the process, there remains a dearth in adequate emotional and psychological coverage. The phenomenological method of inquiry promotes reflection for both the participant and the researcher and permitted the greatest flexibility for interpretation. This is a distinctively unique approach to studying cancer patients and their caregivers. In contrast with other qualitative methods, which often fracture linguistic data for interpretation and generalization by looking at portions of the story, the focus of narrative inquiry is continuity and the ways in which the respondent conceptualizes his/her condition and his/her life as a whole. This study offers a holistic approach to understanding the experience of cancer patients and survivors.
Summary
Constructivist and social construction theory have heightened our awareness that meaning is a social phenomenon that evolves as an unending process through people’s interactions and communications (Rolland, 1994). People set goals, anticipate consequences, create, and select the course of action that is most likely to produce a desired outcome and avoid a detrimental result (Bandura, 2001). Social support and self-efficacy are important predictors Running head: CANCER SOCIAL SUPPORT NARRATIVES 17
of coping and emotional regulation in the face of illness. External consequences are not the only
outcomes that influence human behavior, in general people do the things they have seen
succeed and avoid those they have seen fail (Bandura, 1999). Aside from the physiological
experiences, illnesses are socially constructed events, reproduced, reinforced, and perpetuated
through conversations, memory, discussion experience, and narratives, which is the most basic
unit of discourse (Greenhalgh & Hurwitz, 1998). As researchers, most often we have access to
literature reviewed as a structuring framework versus literature reviewed as a conversation
between theory and life (Clandinin & Connelly, 2000). Running head: CANCER SOCIAL SUPPORT NARRATIVES 18
CHAPTER 2
LITERATURE REVIEW
Social support is central to helping cancer patients adjust to the stress of disease (Dunkel-
Schetter, 1984). The course of personal change is determined by the individual’s self-efficacy
beliefs, as well as the beliefs and treatment by significant others (Bandura, 1997). The self is a
social construct, but through self-influence, personal agency operates on social systems
(Bandura, 1999). Self-efficacy beliefs regulate human functioning through cognitive, affective,
and motivational processes (Bandura, 2002). Agency refers to intentional acts (Bandura, 2001).
In social cognitive theory, people are purposeful operators of his or her life course (Bandura,
1999). An agent displays planning, foresight, motivation, and self-regulation (Bandura 2001).
Individuals act on their beliefs regarding what they can do as well as their beliefs regarding the potential outcome of their performance (Bandura, 1999). Self-beliefs and coping mediate health outcomes (Bandura, 1997).
Self-Efficacy
Self-efficacy refers to personal judgments of how well behavior can be implemented in situations that contain novel, unpredictable, or stressful events as well as ordinary situations
(Bisschop et al., 2004). The notion of self-efficacy is a concept that comes from Bandura’s social learning theory. Self-efficacy beliefs determine the goals people set, the amount of effort they expend, length of perseverance, and how they deal with failures and set-backs (Bandura, 1997).
Self-efficacy has become an important variable in multiple areas of human performance, including health behavior modification (Kohno, et al., 2009). Efficacy beliefs influence how emotionally taxing experiences are perceived and cognitively processed (Bandura, 1999).
Among a population of patients with brain tumors, participants cited emotional concerns as a Running head: CANCER SOCIAL SUPPORT NARRATIVES 19 higher source of distress than physical concerns (Goebel, Kaup, von Harscher, and Mehdom,
2011). Cancer patients who show difficulties maintaining perceptions of control report more psychological distress than individuals that perceive themselves as having control over their diagnosis, treatment, or disease trajectory (Koho, et al., 2009). The most pervasive feature of self-agency is the individual’s capability of exercising a measure of control over his or her functioning and environment (Bandura, 1997; Bandura 2001).
Control
Folkman (1984) defines control as the general belief the individual has regarding the extent to which he or she can influence outcomes of importance. Control is directly related to self-efficacy in that a perception of control reflects the belief in one’s ability to manage situations and events (Bisschop et al., 2004). Control of one’s thoughts is a key factor in the self regulation of emotional states (Bandura, 1999). A sense of personal control is integral to the development of both self-concept as well as self-esteem (Taylor & Brown, 1988). Belief in the controllability of cancer, a personal sense of mastery, and better self-efficacy for coping with cancer have been associated with improved psychosocial adjustment to chronic disease (Napoles,
Ortiz, O’Brien, Sereno & Kaplan, 2011). Controllability does not equate to a reduction in stress or positive outcomes (Folkman, 1984). The well-adjusted person holds a view of him or herself that includes an awareness and acceptance of both the positive and negative aspects of life
(Taylor & Brown, 1988). Self-esteem and control beliefs fulfill the individual’s need to appraise his or herself from a positive perspective (Bisschop et al., 2004). Beyond perceptions of control, ambiguity regarding the disease process is a predictor of high distress (Kohno, et al., 2009).
Psychosocial distress is an individual reaction that cannot be predicted by medical data (Goebel, et al., 2011). Health and illness beliefs influence the way individuals interpret sickness and guide Running head: CANCER SOCIAL SUPPORT NARRATIVES 20 their health-seeking behaviors (Rolland, 1994). Self-efficacy is a powerful mechanism that facilitates cancer patients’ ability to adjust (Koho et al., 2009). There is increasing evidence that a vital ingredient in health-related behavior change is the individual’s perceived self-efficacy in his/her ability to behave differently.
Self-efficacy has strong predictive capability in non-oncology populations for determining the likelihood of individuals engaging in health promotion behaviors (Clandinin &
Connelly, 2000). Assisting people with chronic illness to change their behavior is important in effecting self-management and in achieving the highest possible level of health. Self-efficacy includes health behavior modification (Napoles et al., 2011). Perceived efficacy is a self-referent construct in which the individual is the sole source for what he or she believes (Bandura,
Caparara, Barbaranelli, Regalia & Scabini, 2011). Evidence from research examining applications of Bandura’s theory of self-efficacy on oncology suggests relationships between self-efficacy and cancer prevention and self-efficacy and adaptation to cancer (Koho et al.,
2009). Higher levels of self-efficacy had a protective effect against reports of functional limitation and poor or fair health perceptions (Napoles et al., 2011). A sense of self-efficacy determines how the individual feels, thinks, and behaves (Koho et al., 2009). Self-efficacy is concerned with perceived operative capability and is not evaluated based on outcome (Bandura,
1997; Bandura, 2007). Unless the individual believes he or she can produce the desired effects by his or her actions, there is little incentive to persevere in the face of difficulty (Bandura,
1999).
Human Agency
A sense of personal efficacy is the foundation of human agency (Bandura, 2001;
Mystakidou et al., 2009). Agency refers to acts that are intentionally done (Bandura, 2001). To Running head: CANCER SOCIAL SUPPORT NARRATIVES 21
be an agent is to influence the quality of one’s functioning and events that affect the individual’s
life (Bandura, et al., 2011). Human agency is characterized by self-regulation, intentionality, and
forethought (Bandura, 2007). In a population of cancer patients with a good prognosis, it was
clear that self-efficacy modified the effects of disease on depressive symptoms and higher levels
of self-efficacy were an added benefit (Bisschop, Kriegsman, Beekman & Deeg, 2004). Cancer
patients who have a high sense of coping efficacy adopt strategies and behaviors designed to
change hazardous conditions into benign challenges (Mystakidou et al., 2009). Personal agency
operates within a broad range of social and cultural influences (Bandura, 1999; Bandura, 2002).
Social cognitive theory rejects a dualism between personal agency and social influence
(Bandura, 1999). The diagnosis of cancer rapidly leads to fundamental changes in the
relationship between the individual and his/her environment (Brennan, 2001). These changes can
radically alter the individual’s assumptions about personal control and self-worth. Promoting
increased self-efficacy through the restoration of control will restore confidence and self-esteem
in the cancer patient (Brennan, 2001). Self-efficacy beliefs regulate human functioning through
cognitive, motivational, affective, and decisional processes (Mystakidou et al., 2009). Depression
weakens the individual’s beliefs in his or her efficacy (Bandura, 1999). Human agency combined
with narrative allows research to include multiple voices and subjective experiences (Riessman,
2008).
Coping
Coping mechanisms are learned in a stimuli-response environment conducive to self- efficacy and observational learning (Bandura, 1986). The ability to cope, or deal with stressful situations, is frequently considered the most important factor in recovery and health maintenance
(Weisler, 2006). Coping involves a wide range of deliberate thoughts and actions, including Running head: CANCER SOCIAL SUPPORT NARRATIVES 22
problem solving, reappraisal, avoidance, and support seeking (Lakey & Orehek, 2011).
Avoidance behaviors increase under life-threatening conditions (Van Dijk, Seger-Guttmann &
Heller, 2013). Coping is dynamic and affected by personal experience (Carlick & Biley, 2004).
People who live with a chronic disease will deal with relevant threats or challenges in order to
maintain a level of well-being (Bisschop et al., 2004).
Adaptation
Adaptive coping involves the ability to deal with complex situations from a healthy rather
than pathological perspective (Weisler, 2006). Psychosocial coping resources influence appraisal
of stressors and the individual’s ability to adapt to new information and behaviors (Bisschop et
al., 2004). Through narrative expression, patients are able to externalize their challenges and
view them objectively (Carlick & Biley, 2004). The threat of illness challenges the individual to
mobilize his or her internal and external resources, tap into the full breath of his/her capabilities,
and opens new opportunities and perspectives (Weisler, 2006). A key approach in narrative
therapy is to assist clients with seeing themselves as separate from their challenges. Externalizing
the problems enables the patient to reduce emotional distress (Bolton, 2000; Holmes, 2000).
Emotionally expressive forms of coping are associated with lower levels of distress and greater
quality of life (Owens, Giese-Davis, Cordova, Kronenwetter, Golant & Spiegel, 2006).
Emotional Expression
Emotional expression can contribute to resilience through increasing an individual’s coping resources. Perceived support has a powerful influence on coping (Cicero et al., 2009).
The results of a study on chronic disease patients determined that perceived support has both a direct and a modifying effect on depressive symptoms (Bisschop et al., 2004). Vaux and
Harrison (1985) found that the closeness of the supportive relationship was an important Running head: CANCER SOCIAL SUPPORT NARRATIVES 23
predictor of support satisfaction (Crother et al., 2005). Greater social support is associated with
better emotional adjustment with breast cancer, increased hope, and better mood (Cicero et al.,
2009). Expressions of fear, anger, and sadness related to the cancer can promote a more intimate
connection between cancer patients and their family members (Owen et al., 2006). Perceived
availability and satisfaction with received emotional support are negatively associated with
psychological distress (Cicero et al., 2009). Emotional expression and cognitive efforts of
adjusting to cancer have been linked to better psychological modification. Self-reports from
Owen and colleagues (2006) reflected that emotional suppression was associated with increased
distress.
There is empirical evidence that supports individuals who are optimistic when confronted
with the realistic appraisal of illness have lower levels of anxiety and depression than patients
who feel hopeless and helpless (Cicero et al., 2009). Researchers and practitioners have
eloquently described the need to create meaning systems or exploratory models for effective
coping with an adaptation to illness (Rolland, 1994). These models could lead to interventions
that help patients build upon their current coping skills, optimism, and a sense of hope for the
future. Optimistic patients have longer survival rates (Cicero et al., 2009).
Coping Style
Coping theories also emphasize the positive effect of coping resources. Through stories, patients can create new goals, demonstrating that narratives assist cancer patients with coping
(Carlick & Biley, 2003). Social-cognitive theorists consider social and cognitive transitions to be more important than cognitive adjustment through coping (Brennan, 2001). Sommerfield and colleagues (1999) believes that coping research should narrow its focus to the stressor. The assumption of a coping style approach is that coping will reflect enduring attitudes and Running head: CANCER SOCIAL SUPPORT NARRATIVES 24 behaviors, similar to a personality trait (Lazarus, 1998; Brennan, 2001). Little is known about the influence of environmental and event related factors on personal adaptation (Sommerfield,
Stefanek, Smith & Padberg, 1999). Lazarus suggests focusing on the specific threats and immediate concerns of the patient, rather than broadening the focus of attention to overall illness
(Brennan, 2001). Lazarus also makes a distinction between research focusing on the individual’s coping style, his/her general response to dealing with stress, and the utilization of a specific coping response (Brennan, 2001). Both approaches are evident in psycho-oncology literature.
How individuals appraise and respond to threats and experiences reflects his or her coping style
(Brennan, 2001). The assumption is coping will reflect a relatively enduring attitudinal and behavioral style, similar to a personality trait (Brennan, 2001).
Adaptive Style. A study by Parle and colleagues (1996) sought to assess the coping features that can be observed during the first few weeks after diagnosis that could predict the later development of affective disorders (Brennan, 2001). There are often early signs that can predict the patient’s emotional outcome. The data suggest that individuals with an adaptive coping style held outcome expectations and self-efficacy beliefs that are likely to facilitate their performance on coping responses (Brennan, 2001). Among a population of prostate cancer survivors it was determined that higher levels of adaptive coping at baseline partially mediated the relationship between social support and emotional well-being (Zhou, Penedo, Bustillo,
Benedict, Rasheed, Lechner, Soloway, Kava, Schneiderman & Antoni, 2010). In a study of recently blinded patients adjusting to loss of sight, it was determined that acceptance and adjustment were strongly related to self as agent (or self-efficacy), but only weakly correlates with self-worth (Brennan, 2001). Among cancer survivors who manifest resilience in the face of illness, two factors in particular are consistently found to be associated with successful Running head: CANCER SOCIAL SUPPORT NARRATIVES 25 adaptation: perceived social support, especially from the spouse/partner, and coping style
(Alfonso & Rowland, 2006).
Avoidant coping. Normal coping strategies are tested in the face of a cancer diagnosis
(Van Der Molen, 2000). In the study by Van Der Molen and colleagues (2000), cancer produced feelings of vulnerability that impacted normal coping mechanisms; resulting in a decreased ability to process information and a decreased ability to discuss needs beyond medically specific concerns. Avoidance coping facilitates survival by driving individuals away from threat (Van
Dijk, Heller & Seger-Guttmann, 2012). A belief in one’s ability to cope with sources of stress reduces biological reactions than can impair immune function (Bandura, 1997). Avoidance motivation has a negative, undesirable end-state as the focal point; this negative focus evokes aversive psychological processes such as expecting the worst, interpreting minor signs as a threat, and feeling anxious (Van Dijk et al., 2012). Use of avoidant coping is associated with increased distress and lower quality of life (Kershaw et al., 2008). Patients should be encouraged to actively cope to reduce cancer-related stress. Interventions include engaging in enjoyable activities, maintaining supportive relationships, considering the meaning and purpose of the illness, and using acceptance, which is a powerful active coping strategy. Acceptance involves acknowledging that something serious has happened, and trying to move forward to deal with it.
Professionals working with cancer patients face the challenge of viewing the patient beyond his or her medical needs. Clinicians are advised to encourage patients to use approach-oriented coping strategies such as active acceptance, seeking social support, and emotional expression
(Stanton et al., 2005).
Promoting increased self-efficacy through enabling people with cancer to take control of and participate in their lives again, is likely to restore their confidence and self-esteem (Brennan, Running head: CANCER SOCIAL SUPPORT NARRATIVES 26
2001). Apart from the endorsement of personal control and self-efficacy, coping theory and research has been of limited practical use to the clinician (Brennan, 2001). The SCT model offers clinicians a more plausible heuristic for understanding clinical material and developing interventions (Brennan, 2001), but it has failed to adequately take into account the existential reality of individuals in life-threatening situations (Spiegel, 1997). The established coping theories offer few insights as to why some people attribute personal growth to their cancer experience, how relationships within couples and families are disrupted, or how emotional problems such as anxious intrusive ruminations develop. Sommerfield and colleagues (1999) suggests several methodologies that offer a rich and in-depth understanding of the individual and environmental factors and the ways in which these interactions affect coping.
Coping Support
Interpersonal relationships play a key role in the way people cope with distress and adjust to crisis (Cicero et al., 2009). Multiple empirical studies demonstrate the link between social support and health status (Wasserman et al., 2006). Being socially ineffective contributes to depression both directly as well as through impeding the further development of supportive relationships (Bandura, 1999). The link between perceived support and mental health is often reflected through social interactions (Lakey & Orehek, 2011). Coping does not explain the link between perceived support and mental health (Lakey & Orehek, 2011). A perceived lack of coping efficacy breeds anxiety (Bandura, 1997). The demands of treatment can lead to changes in social roles, which may challenge established assumptions about self-worth and self-efficacy
(Brennan, 2001). A contributing factor to distress is a lack of social support (Dickerson, Alqaissi,
Underhill & Lally, 2011). There is limited research investigating how social support and the use Running head: CANCER SOCIAL SUPPORT NARRATIVES 27 of coping may affect the emotional well-being of this population following treatment (Zhou et al., 2010).
Social Support
The emotional bonds of marriage, family, and friendship create different constraints, obligations, and interaction; in recognizing this phenomenon, it is essential that we understand the role that social support plays in the lives of cancer patients and their caregivers (Dakof &
Taylor, 1990). In a study of couples affected by cancer, patients and caregivers who perceived higher levels of spousal support reported less emotional distress over time (Dagan, Sanderman,
Baas, van Haastert, Schokker & Wiggers, 2011). How people make support judgments is a fundamental issue in social support research (Lutz & Lakey, 2001). There is a reciprocal relationship between social support and coping as both constructs influence subjective well being (Savelkoul, Post, Witte & van den Borne, 2000). Alleviating distress is best achieved through the couples’ relationship as opposed to on one’s own (Giese-Davie, Hermanson,
Koopman, Weibel & Spiegel, 2000). Supportive relationships may contribute to improved emotional well-being following treatment by facilitating the use of adaptive coping strategies
(Zhou et al., 2010).
Self-Regulation through Social Support
Self-regulation is what allows a person to control his or her response or behavior when confronted with externally imposed stimuli (Bandura, 1986). Cancer changes how individuals relate with their family and friends, and in turn affects the ways in which those people relate with the patient (Van Der Molen, 2000). Social support influences well-being through coping
(Savelkoul et al., 2000). Previous research has determined that adjustment is correlated with the degree to which cancer patients feel they can share their concerns with significant others (Cicero, Running head: CANCER SOCIAL SUPPORT NARRATIVES 28
et al., 2009). Social support has been the focus of many studies examining the relation between
chronic disease and depression (Bisschop et al., 2004). We suffer when our interpersonal bonds
are severed and feel relief when we feel connected (Engel, 1996). Support from family and
friends enhance psychological well-being directly by fulfilling a need for coherence and
belonging, conversely off-setting feelings of loneliness (Bisschop et al., 2004). As recommended
by Zhou and colleagues (2010), attention should be given to strengthening social support
networks and educating survivors on adaptive coping techniques. Supportive relationships
enhance self-efficacy (Bandura, 1999), resulting in improvements in adjustment and
psychosocial well-being (Cicero et al., 2009). Most of our goals and aspirations are only
achievable through socially interdependent efforts (Bandura, 2002).
Social support plays a crucial role in emotional expression (Willis & Bantum, 2012).
Among Latinas with breast cancer, support from family and friends have been identified as
essential in meeting their physical and emotional needs and reducing distress (Napoles et al.,
2011). Social support buffers the negative association between intrusive thoughts, and
psychological adjustment by alleviating depressive symptoms (Cicero et al., 2009). Individuals
who withdraw from and avoid others report receiving less social support (Giurgescu, Penckofer,
Mauer, & Bryant, 2006). In a study of patients living with Parkinson’s disease, it was determined
that the more patients withdrew from others, the more likely they were to exhibit poorer
outcomes in mental and physical health (Frazier, Tix, Klein & Arikian, 2000). Connecting with
another individual who has a similar diagnosis and or treatment process is a coping strategy that can help newly diagnosed individuals deal with anxiety.
Patients who receive effective support from significant others show better psychological adjustment to the challenges of cancer than patients who either lack social support or whose Running head: CANCER SOCIAL SUPPORT NARRATIVES 29
support systems are ineffective (Crothers, Tomter, and Garske, 2005). Positive emotions assist
the individual in cultivating social, physical, and intellectual resources (Fredrickson, 1998).
Emotional expression can lead to resilience through increasing the person’s bank of resources
(Willis & Bantum, 2012). Fredrickson and colleagues have demonstrated that positive emotions
broaden cognitive behavioral thought-action repertoires that can assist people with building long
term social support (Cohn, Fredrickson, Brown, Mikels & Conway, 2009). As patients move
through the cancer trajectory, descriptions of social support change in connection with each
particular phase of their illness (Makebe & Hull, 2000). Bisschop and colleagues (2004)
discovered that having a partner, reporting high self-esteem and self-efficacy, and low self-
reports of loneliness, buffered the negative effects for some, but not all chronic disease patients.
Attachment styles influence the individual’s self-efficacy and expectations of care from
significant others (Cicero, et al., 2009). People vary in their level of connectedness with others.
Attachment styles are often influenced by culture and other social factors and generally begin in
childhood. Adult attachment avoidance is defined as the excessive need to be self-reliant and the
fear of depending on others (Cicero et al., 2009). Close family ties may increase emotional
distress, particularly if the illness interferes with family and household responsibilities (Napoles
et al., 2011). Patients and their social attachments are not only responding to and coping with a crisis in their lives, they are also drawing conclusions from that circumstance (Brennan, 2001).
Despite the key role they play in survivor’s well-being, there has been relatively little research examining the family member’s functioning either during or after the cancer treatment experience (Alfano & Rowland, 2006). Women often consider themselves to be the emotionally strong member in the family unit, frequently maintaining a positive facade in order to protect family members from emotional harm (Dickerson et al., 2011). Running head: CANCER SOCIAL SUPPORT NARRATIVES 30
This is a period in which family members must adapt to the changes brought on by cancer
(e.g., role changes, economic shifts, or ongoing care needs) in order to deal with their loved ones’ lingering illness effects, and learn to live with potential uncertainty about the future
(Alfano & Rowland, 2006). Data from other illness experiences offers implications for spousal self-care. There is a clear link between caring for oneself and the length of life (Anderson &
Spencer, 2002). A cycle of helplessness, passive coping, and psychosocial impairment promotes maladaptive adjustment (Smith and Wallston, 1992). In a study of couples facing Parkinson’s disease, it was determined that high caregiver distress directly correlated with feelings of low support as reported by the participant (Hodgson, Garcia & Tyndall, 2004). The patient’s family system is interconnected throughout the process. Research indicates that like survivors, family members too may exhibit emotional adjustment problems after treatment ends, and further, these patterns of adaptation may be interdependent (Alfano and Rowland, 2006). In the Parkinson’s study, it was not the patients who reported decreased community support; it was the caregiving partner that needed additional social support (Hodgson, Garcia & Tyndall, 2004). Dempster and colleagues (2011) suggest that caregivers find an alternative source of social support as a coping mechanism. In the study by Dickerson and colleagues (2011), although women realized that people in their lives desired informational support as well, they controlled the flow of information to others based on knowledge of personalities, geographic location, family constellations, and who might be most helpful. This control of information helped the participants in the study avoid potential negative support.
In a study of disclosure patterns among breast cancer patients, the results indicated that women report confiding in family and friends more often than mental health workers (Figueirdo,
Fries & Ingram, 2004). A negative health status may require family and friends to increase levels Running head: CANCER SOCIAL SUPPORT NARRATIVES 31
of support to meet the patient’s needs, demands, and expectations. The same amount of social
support might be sufficient for people without a chronic disease, but evaluated as lacking or
insufficient by individuals with a chronic disease (Bisschop et al., 2004). The needs of family
members may emerge and exert a major influence on patient adjustment (Beacham et al., 2005).
The diagnosis may strengthen some relationships, bringing people closer together. Cancer can
also be a precursor to the end of a relationship. In a study by Dakof and Taylor (1990), emotional
support was perceived to be the most helpful if present and the most harmful if absent when the
source was a spouse, family member, or friend (Helgeson & Cohen, 1996). Perceived quality of
support is of greater importance than the actual amount of support received (Bisschop et al.,
2004). Low perceptions of support are associated with emotional disturbance (Lakey, Drew &
Sirl, 1999). When family support is unavailable, friends can be invaluable in providing both
psychological support and practical assistance (Van Der Molen, 2000).
Unsupportive Behaviors
Some cancer patients and survivors have stated that social support is either not available
to them or is inappropriate or unhelpful, such as when others are responding critically to how the
patient copes with his/her diagnosis or are overly optimistic or protective (Jones et al., 2012).
Some patients report feeling an imbalance of support, either support they requested was not
given or support they were given had not been requested (Makebe & Hull, 2000). Unsupportive
reactions contributed to increased role limitations by the patient, emotional problems, and a
decrease in social function (Figueriedo, Fries & Ingram, 2004). Unsolicited and unwelcomed
support includes personal questions and advice regarding surgery (Makebe & Hull, 2000). Other unhelpful behaviors cited by cancer patients include minimizing the problem, forced cheerfulness, being told not to worry, medical care being delivered in the absence of emotional Running head: CANCER SOCIAL SUPPORT NARRATIVES 32
support, and insensitive comments; all of which my inhibit the patient from discussing his or her
illness (Helgeson & Cohen, 1996). When friends and family are perceived as critical of patient
responses to their illness or convey discomfort or disinterest when patients talk about their
illness, patients experience greater psychological distress (Cicero, et al., 2009). As caregiving
responsibilities increase, many caregivers may feel increased isolation, as friends and family
make themselves unavailable (Hodgson, Garcia & Tyndall, 2004). Dakof and Taylor (1990)
found that a particularly hurtful behavior observed by patients was other’s avoidance of the
individual who has been diagnosed with cancer (Helgeson & Cohen, 1996).
In a study of Japanese women with breast cancer, the same behaviors offered by those
that were not a part of the individual’s inner circle were perceived as unsupportive and a source
of conflict (Makebe & Hull, 2000). Zakowski and colleagues (2004) reported among prostate
cancer and gynecological patients with social support systems unresponsive to the expression of
problems and emotions, those asked to engage in emotionally expressive writing exhibited
improvements in distress levels. In the Japanese study, a patient reported spending more time and
energy consoling family members regarding her diagnosis as opposed to receiving support from
family (Makebe & Hull, 2000). This is not an uncommon experience. Cancer patients often cite a
decrease in emotional support, particularly when the individual is expressing fears of recurrence
(Stanton et al., 2005). Intrusions from relatives, friends, coworkers, and neighbors who were not emotionally close were distressing because they ignored socially acceptable group boundaries among the Japanese population (Makebe & Hull, 2000).
The link between life stress and poor mental health is stronger for people with low social support than for people with high social support (Lakey & Orehek, 2011). Cancer changes family roles, creates new lines of dependency, and can lead to family members engaging in defenses Running head: CANCER SOCIAL SUPPORT NARRATIVES 33
such as withdrawal and criticism (Cicero, et al., 2009). Patient and partner ratings of
unsupportive behavior were highly correlated (Manne, Ostoroff, Winkel & Grana, 2005).
Unsupportive behavior, as identified by both the patient and caregiver predicted higher levels of
avoidant coping and distress. Partner unsupportive behavior had a detrimental effect in cases
where the patient identified and perceived the behavior as unsupportive (Manne et al., 2005).
Patients who perceive high levels of critical or avoidant responses by spouses report greater
psychological concerns (Cicero et al., 2009). It is important to view support through the lens of
the patient and his/her family system.
Coping as a Couple
Most researchers consider the marital relationship an essential resource for both the
individual and his/her partner. Simply having a spouse was associated with lower mood
disturbance among a population of women with metastatic cancer (Giese-Davis et al., 2000). A
good marital relationship predicts better emotional adaptation to cancer and acceptance of illness
(Cicero et al., 2009). Intimate partners are an especially important source of support (Dagan et
al., 2011). Mann and Badr (2008) highlight the importance of focusing attention on the
relationship and engaging in communication behaviors aimed at sustaining and/or enhancing the
relationship throughout the disease process. Rolland (1994) recommends that couples speak openly about their illness experience (Hodgson, Garcia & Tyndall, 2004). Patients and their partners engage in behaviors that either promote or undermine the level of closeness in their relationship. The closeness and emotional integrity of the marital relationship is an important determinant of patient and partner psychological adaptation to cancer (Mann & Badr, 2008).
Marital distress can exacerbate the patient’s condition (Giese-Davis et al., 2000). Rolland (2004) emphasizes the importance of clear and open communication regarding the illness experience to Running head: CANCER SOCIAL SUPPORT NARRATIVES 34
manage the biopsychosocial adjustments. In a study of caregiver and receiver communication, it
was determined that caregivers who take an overly directive communication style were either
women or those who had a high degree of autonomy prior to the diagnosis (Edwards & Noller,
1998). Because illness includes the wider personal and social consequences of the disease along
with the medical aspects (Brod, Mendelsohn & Roberts, 1998), patient well-being is related with
the perceptions of his or her caregiver’s communication (Edwards & Noller, 1998).
Social cognitive theory gives credence to the perceived efficacy of families to manage the
challenges faced in familial relationships and the quality of family life (Bandura 2006; Bandura
et al., 2011). The patient’s concerns are a product of the interaction between the disease and the
personal, developmental, and social context (Brod, Mendelshohn & Roberts, 1998). If caregivers
have strong negative feelings about his or her caregiving experience, it is likely that the
individual will display some form of neglect towards the patient in his or her care (Edwards &
Noeller, 1998). The partner relationship is the most important relationship in the social network
(Bisschop et al., 2004). Partner support relates directly with treatment adherence (Power,
Koopman, Volk, Israelski, Stone, Chesney & Spiegel, 2003). Spousal efficacy centers on the
partners’ perceived ability to communicate openly, confide in each other, provide mutual
support, resolve marital problems, and work through disagreements (Bandura et al., 2011).
Marital tension has a negative effect on family member’s coping behaviors (Lewis & Hammond,
1996). The quality of the relationship prior to diagnosis and during treatment does not appear to be a relevant issue (Power, et al., 2003, Grabel & Adabbo, 2011). Diseases exert an inward pull and require increased family cohesion (Rolland, 1994).
There is little evidence to support that divorce or separation is a common aftermath of cancer, in contrast, the diagnosis may strengthen bonds of commitment (Alfano & Rowland, Running head: CANCER SOCIAL SUPPORT NARRATIVES 35
2006). For some, a difficult diagnosis may help affirm the couple’s commitment to each other
(Hodgson, Garcia & Tyndall, 2004). Although cancer patients generally cite their spouses as the most important source of social support, research suggests that friends and other family members are also key providers of emotional support (Cicero, et al., 2009). A study seeking to identify the information needs of individuals living with cancer determined that cancer impacts self-identity, including body image, family, social, and work relationships (Van Der Molen, et al., 2000).
Contrary to the general assumption that considers family members as the primary support for cancer patients, Cicero and colleagues (2009) found that social support from family members was not predictive of various states of adjustment to cancer. Interventions that promote coping skills conducted with caregivers alone or in combination with the survivor, have yielded modest effects including less depression, lower mood disturbance, and greater marital satisfaction
(Alfano & Rowland, 2006).
Child and Adolescent Adjustment
The diagnosis, individual, and collective responses will have a direct impact on the patient and spouse’s ability to parent. Social and emotional strain from the illness causes an increase in parental depression and marital tension (Lewis & Hammond, 1996). In a study of parent and adolescent responses to non-terminally ill cancer, it was determined that parents were often unaware of the stress and feelings of overwhelming sadness and fear their children were experiencing (Davey, Askew & Godette, 2003). How children cope with the stress of their parent’s cancer plays an important role in the child’s emotional adjustment (Compas, Worsham,
Ey & Howell, 1996). A child with a parent who has been diagnosed with cancer faces significant psychological stressors. Having a chronically ill parent exposes children to the threat of permanent loss, temporary loss of a parent due to treatment schedules and side effects, and a Running head: CANCER SOCIAL SUPPORT NARRATIVES 36 disruption in family roles and routines (Davey, Askew & Godette, 20003). Stage and prognosis of parental cancer were related to increased stress and avoidance in teens (Compas, Worsham,
Ey, & Howell, 1996). Adolescent self-esteem is higher under conditions of positive marital adjustment, parental attentiveness, and when coping behaviors match family pressures (Lewis &
Hammond, 1996). Compas and colleagues (1996), report that adolescents reported more emotion-focused coping than younger children. Long-standing family communication patterns intensify with cancer progression (Geise-Davis et al., 2000). In a study of family efficacy beliefs, a high sense of collective family efficacy was accompanied by open family communication
(Bandura, Vittorio Caprara, Barbanelli, Regalia & Scabini, 2011). In an atmosphere of open communication, adolescents will confide in their parents regarding their concerns, activities, and the dilemmas they face (Bandura, 2011). Due to personal crisis, parents may have a difficult time recognizing and addressing their children’s emotional needs (Davey, Askew & Godette, 20003).
Children’s perceptions of the seriousness or stressfulness of parental cancer is more related to the child’s coping efforts than the real characteristics of the disease (Compas et al., 1996).
According to Davey and colleagues, similar familial and parental processes occur when adolescents are coping with either a depressed or physically ill parent (Davey, Askew & Godette,
20003). In the study by Compas and colleagues older children used relatively ineffective coping strategies; adolescents were less adaptive in their coping skills than younger children. Because of their developmental stage, adolescents feel tom between normal developmental tasks and the need to cope with the practical, psychological, and social demands of illness (Davey, Askew &
Godette, 20003).
Supportive Others Running head: CANCER SOCIAL SUPPORT NARRATIVES 37
Perceived support from friends is associated with the patient’s ability to view cancer as a
challenge and take an active role in therapy and recovery (Cicero et al., 2009). Across cultures it
appears that individuals talk about their feelings more openly with other patients (Makebe &
Hull, 2000). Friends are in a unique position to provide emotional support, because they are less
vulnerable to the anxiety and personal threat of cancer experienced by family members (Cicero,
et al., 2009). In the study by Makebe and Hull (2000), women valued the ability to maintain
harmonious relationships by both giving and receiving care. Feeling connected with friends and
supported by others may provide a sense of hope and confidence, resulting in a greater sense of
interconnectedness with others and opportunities to engage in social activities (Cicero et al.,
2009). The study of Japanese women with breast cancer determined that the research participants
felt they were more aware of others’ needs because their own cancer increased the amount of care they provided to others (Makebe & Hull, 2000).
Cicero and colleagues (2009) suggests that stronger ties among friends elicit instrumental and informational aid that facilitates adjustment to illness. Friends may offer a more objective view. One assumption is that social support from family members is obligatory, whereas support from friends is voluntary (Cicero et al., 2009). Friends are less afraid of exploring emotionally difficult subjects such as living wills, advanced directives, and end of life planning. Perceived support from friends may predict a lower resignation to illness (Cicero et al., 2009). Conversely, reciprocity was also a source of stress for women in the Japanese study (Makebe & Hull, 2000).
When cancer survivors feel responsible for the emotional care of other cancer patients, there can be an emotional backlash, undermining the positive effects of peer support. The word cancer is not openly discussed among Japanese patients, but there were stories of an important bond between family members who shared a history of cancer (Makebe & Hull, 2000). Running head: CANCER SOCIAL SUPPORT NARRATIVES 38
Support groups that include other patients can offer a uniquely supportive and normalizing experience for patients struggling to deal with their post-treatment health and identity as survivors (Alfonso & Rowland, 2006). Through observational learning a single individual can demonstrate new ways of thinking and behaving, impacting an entire group
(Bandura, 1999). In a study of breast cancer patients who participated in an expressive arts group, women in the group discussed the importance of their being able to express strong emotions, such as fear, anger, and sadness about dying (Giese-Davis, Kooperman, Butler,
Classen, Cordova, Fobair, 2002). Self-reports of emotional suppression were associated with increased distress (Owens, et al., 2006). According to Giese-Davis and colleagues (2002), one participant described the group as a place where [she could] get her feelings out, where [she would] not be rejected, and where individuals can say whatever he or she wants. Support groups are valuable for assessing up-to-date information and empathetic connection (Hodgson, Garcia &
Tyndall, 2004). Data indicated that relatively few cancer patients or survivors avail themselves to mental health services in general, or support groups specifically (Alfonso & Rowland, 2006).
Talking to others promotes recall of important health messages (McQueen, 2011).
Developmental studies have demonstrated that a high sense of efficacy promotes an altruistic orientation characterized by cooperativeness, helpfulness, and sharing, with a vested interest in each other’s welfare (Bandura 1999; Bandura, 2007). Though much is known about the benefits of social support for both physical and psychological health outcomes in Western cultures, it is recommended that social support be studied in cultures other than the United States (Makabe et al., 2000). Social practices, ideas, and values are modeled throughout various cultures (Bandura,
1999).
Multicultural Perspectives Running head: CANCER SOCIAL SUPPORT NARRATIVES 39
Culturally appropriate cancer services would give us insight into how individuals from
various cultures make sense of their experience through a cultural lens (Howard, Bottorff,
Balneaves & Grewal, 2007). Different cultures may share similar etiology of psychological
distress patterns, yet manifestations of psychological suffering can vary depending on cultural
traditions (Mystakidou et al., 2009). People compose their stories by combining narrative styles
that cultures make available (Howard & Bottorff, 2007). Cultural norms vary and will define the
role of the sick person, the roles of specific family members, who should or should not be
included in the decision-making process, the types of treatments that will be received, as well as
the types of rituals performed (Rolland, 1994). Cultural influence and enmeshment shape the
ways in which efficacy beliefs are developed (Bandura, 2001). Efficacy beliefs function in
complex ways, regardless of the socially constructed cultural pursuits (Bandura, 2002).
According to Bandura (2007), people from individualistic cultures feel most efficacious and perform best while living within an individualistically oriented system as opposed to those from collectivist cultures who judge themselves most efficacious when residing in a group oriented setting. Social cognitive theory is suited to explain human development and adaptation in diverse cultural settings (Bandura, 2002).
Reportedly, immigrant Latinas describe a lower utilization of cervical cancer screenings, which can be attributed to a potential lack of social support and connections with the health community (Wasserman, Bender, Lee, Morrissey, Mouw, and Norton, 2006). Spanish-speaking women may feel less control over their breast health than Caucasian women (Napoles, et al.,
2011). Studies describing beliefs and knowledge about cancer among South Asian immigrants reported that cancer is often viewed as a stigmatized and feared disease that is rarely discussed Running head: CANCER SOCIAL SUPPORT NARRATIVES 40
openly (Howard & Bottorff, 2007). Among a population of Japanese women with breast cancer,
having cancer and how women felt about it were not openly discussed (Makebe & Hull, 2000).
Immigrant women must overcome a formidable array of linguistic, cultural, financial, and
material barriers to healthcare (Wasserman, et al., 2006). Due to financial constraints, social
stigma, and immigration challenges; those diagnosed with cancer have been known to avoid
health care, refrain from disclosing his/her diagnosis with others, and possibly refuse treatment
(Howard & Bottorff, 2007). Cultures and families are diverse in their expectations regarding
whether or not priority is placed on making sacrifices for the family during a time of need versus
a focus on individualistic goals and plans (Rolland, 1994).
A logical step in assisting immigrant women with increased access to health care would
be supporting the enhancement of their social support networks (Wasserman et al., 2006). A
study of Punjabi women reported four storylines which emerged from an ethnographic narrative
analysis: getting through a family crisis, dealing with yet another health problem, living with
never-ending fear and suffering, and learning a lesson from God (Howard et al., 2007). Family
members often feel misunderstood by health care practitioners (Rolland, 1994). Understanding
and valuing cultural diversity is vital to developing more effective and individualized care with
patients’ and families’ desires and comfort at the forefront of treatment (Makabe et al., 2000).
Health professionals are required to familiarize themselves with the various cultural norms and beliefs of various ethnic and religious populations (Rolland, 1994).
Beyond social support, immigrants may require material aid such as transportation, motivational support, and advocacy through the legal and healthcare system (Wasserman et al.,
2006). From a western perspective, it is believed that cancer patients and survivors need to make cognitive, emotional, and social efforts to create a sense of control over his or her disease Running head: CANCER SOCIAL SUPPORT NARRATIVES 41
progression (Weisler, 2006). A westernized population tends to look for support regarding
confronting their diagnosis and controlling their emotions, whereas a Japanese sample
demonstrated an ability to accept his or her diagnosis through mindfulness techniques (Ando,
Morita, Akechi & Ifuku, 2011). The American health system works diligently to control health
decline as well as death (Kaufman, 2000). Beliefs concerning control refer to the patient and
family’s attitudes regarding their role in the decision-making process rather than simply their
beliefs in reference to a cure (Rolland, 1994).
Little has been reported regarding the support needs of ethnic minorities with prostate
cancer (Zhou et al., 2010). Although support used by African Americans has been reported as
centering on family, friends, and church (Sinfield et al., 2009), more diverse samples should be
involved in future studies to test assumptions about the cultural or demographic differences in
the effects of narrative (McQueen, 2011). African American women reported finding added
meaning after their diagnosis; this provides support for a possible mechanism for ethnic
differences (Ganz et al., 2003). A study of appraisal, coping, and social support among
caregivers of Alzheimer patients found that Black caregivers evaluated patient problems as less
stressful, reported lower rates of depression, and reported higher self-efficacy than their White counterparts (Haley, Roth, Coleton, Ford, West, Collins & Isobe, 1996). Credited to a long history of oral tradition, African Americans may be more receptive to narrative health communication (McQueen et al., 2011). Additionally, there have been few studies conducted on the ways in which parental cancer affects minority families (Davey, Askew & Godette, 20003).
Mediating processes such as stress appraisal and coping are rarely studied in predominantly
Black communities (Haley, et al., 1996). Regardless of the culture, creating stories is an essential way that people make sense of their lives, give order to life’s events, make connections between Running head: CANCER SOCIAL SUPPORT NARRATIVES 42
thoughts, feelings and actions, and make meaning (Goodrich, 2006). The narrative impulse is a
universal experience (Riessman, 2008).
Implications
Treating cancer alone is no longer enough; we must focus on the goal of helping those
living with cancer beyond a cancer diagnosis lead full, productive, and meaningful lives
(Alfonso & Rowland, 2006). A holistic view of the patient and his/her caregivers is integral to
providing good care (Hodgson, Garcia & Tyndall, 2004). Physicians frequently talk rather than
listen and patients frequently withhold their questions (Tuckett, Boulton, Olson & Williams,
1986). Patients want their physician to give them a better story, one that makes their problems
seem minute, understandable, or manageable. Patients seek help in the face of uncertainty and confusion. It gives them clear direction (Goodrich, 2006). Physicians can leam to attend more acutely to what their patients are saying and assist in reconciling the multiple contradictory versions of any given clinical story (Tuckett et al., 1986; Goodrich, 2006). It may be necessary for practitioners to retrace their understanding of the patient. Psychotherapy, like art, holds a mirror up to nature (Greenhalgh & Hurwitz, 1998). Health care providers are a specific source of support for patients (Dunkel-Schetter, 1984). It is important for health care practitioners to leam what constitutes supportive interactions that reduce distress and support adjustment to living with cancer (Dickerson et al., 2011). Some people are unable to process risk information in a rational, unbiased way; knowing the counter arguments people generate may allow researchers to address and circumvent these thoughts in health communication materials (McQueen, 2011). The patient’s narrative can explain how he or she arrived at his/her present state and provide guidance for moving forward. According to Clandinin and Connelly (2000), we leam the most about narrative inquiry through conducting narrative studies. Running head: CANCER SOCIAL SUPPORT NARRATIVES 43
The way in which a diagnosis is communicated appears to matter more than the actual
words used (Van Der Molen, 2000). Health care practitioners that practice through understanding
what constitutes supportive interactions help to reduce distress and enhance support for adjusting
to a life with cancer (Dickerson et al., 2011). In the study by Van Der Molen (2000), participants
wanted honesty from their health professionals. Honesty leads to trust. When individuals trust
their doctors, they are more likely to promote engagement throughout the decision-making
process. Negative interactions with healthcare providers made participants feel more vulnerable
and less likely to ask questions (Van Der Molen, 2000). A fragmentation of care influenced the
expectations of what individuals believed they could anticipate from their health care providers
and at times give rise to confusion and potentially conflicting advice and information. The best
patient care comes from a team of physicians, mental health, and administrative staff. Most
researchers would suggest an interdisciplinary plan for care that fosters interactive problem
solving strategies and a more collaborative approach to patient care (Hodgson, Garcia & Tyndall,
2004). Health care professionals can incorporate culturally appropriate interventions that respect the interpersonal boundaries inherent in multi-cultural interactions (Makabe et al., 2000).
A goal would be to close the gap between the professionals who are operating from a disease perspective and the family members who are operating from a personal perspective
(Rolland, 1994). Most people want to take an active role in their treatment process (Brennan,
2001). A positive consequence would be to have the patient and family feel heard by his or her clinician. The initial intake or crisis phase is a useful time for practitioners to get a sense of the families’ values, beliefs, illness narrative, and coping strategies (Rolland, 1994). This is a shift away from the usual medical paradigm. In order to be culturally competent and implement narrative techniques, physicians and other healthcare professionals will have to suspend the Running head: CANCER SOCIAL SUPPORT NARRATIVES 44
desire to dominate the conversation with patients and family with a disease paradigm (Rolland,
1994). Health care practitioners can use the insights gained from cancer narratives to generate
questions and explore cancer survivor’s pre and post treatment needs (Dickerson et al., 2011).
Summary
Self-reports of emotional suppression are associated with more rather than less distress
(Owen et al., 2006). Narratives give patients the opportunity to express thoughts, fear, and
concerns. Illness stories are told within specific social contexts (Howard & Bottorff, 2007). The
role of individuals in the lives of patients gives great insight into the patient’s strengths, coping
ability, and need for additional support. Notable in the literature on social support are the
negative consequences of unsupportive social interactions (Jones et al., 2012). Individuals with
high self-efficacy attract support from others, reinforcing his or her ability to cope (Bandura,
1999). Low self-efficacy is linked with depression (Bandura, 1997). There is limited information
in the literature regarding the impact of social support on cancer patient narratives. A widely
used method of creating field texts is interview (Mishler, 1986), which may be turned into
written transcripts through a variety of means. A retrospective narrative can be extremely therapeutic during the course of a chronic disease (Rolland, 1994). There is a reflective relationship between living a life story, telling a life story, retelling, and reliving the story.
Narrative can be used to reaffirm core beliefs, strengthen positive skills acquired through the illness experience, and assist with re-storying (Rolland, 1994). Future research is needed to identify the potential indirect effects of narratives on intentions and behavior (McQueen, 2011).
Health care providers must realize that they serve as vital gatekeepers to services that will help optimize psychosocial and physical outcomes (Alfano & Rowland, 2006). An interdisciplinary team consisting of the medical providers, social workers, counselors, dietitians and physical Running head: CANCER SOCIAL SUPPORT NARRATIVES 45 therapists may help gather a more complete understanding of the patient’s biopsychosocial experience (Hodgson, Garcia & Tyndall, 2004). Individuals who believe they can manage threats are less distressed; individuals lacking in self-efficacy are more likely to amplify risks (Bandura,
1997). Practitioners are in a unique position to assist individuals in transitioning from stories of illness to stories of growth. They are poised to provide hope for a healthy future to those living with and beyond a cancer diagnosis (Alfano & Rowland, 2006). Illness is a lived experience; phenomenology promotes a full exploration of the experience (Brown et al., 2006). Informal phenomenological inquiry can be seamlessly integrated into counseling practice (Wertz, 2005). Running head: CANCER SOCIAL SUPPORT NARRATIVES 46
CHAPTER 3
METHODS
Narrative Phenomena
In narrative inquiry, people are viewed as embodiments of their lived experiences
(Clandinin & Connelly, 2000). Narrative inquiry is influenced by realism, postmodernism, and constructionism (Riesman, 2008). A pattern here and an occasion there are woven together to create the individualized story. The personal narrative does not merely reflect illness experience; it contributes to the experience of symptoms and suffering (Rolland, 1994). “Narration encourages intimacy” (Engel, 1996, p. 431). The relationships that are established influence the field notes that are collected (Clandinin & Connelly, 2000). A narrative approach emphasizes the co-creation of stories reflecting the health experiences that incorporate the belief systems of all involved (Rolland, 1994). Narratives facilitate a vicarious participation by the listener (Engel,
1996). If our understanding of the world is through language and stories, it makes sense to study human behavior narratively (Clandinin &Connelly, 2000). Through narrative, knowledge is constructed in the everyday world via a common communicative act; storytelling (Riessman,
2008). We understand the experiences of others through the evolution of story. "Our species thinks in metaphors and leams through stories" (Bateson, 1994, p. 11; cited in Clandinin &
Connelly, 2000).
Narrative Researcher
Like an anthropologist, the narrative researchers acts as a careful observer gathering a variety of field texts in the hopes of offering accounts of connections among stories and experiences (Clandinin & Connelly, 2000). Most ethnographic researchers become entrenched in the participant’s daily environment. In the case of immersion there is an inseparability of the Running head: CANCER SOCIAL SUPPORT NARRATIVES 47 researcher and participant (Bateson, 1994, cited in Clandinin &ConnelIy, 2000). The attitude of the interviewer toward the participant should foster learning (Bateson, 1994; cited in Clandinin
& Connelly, 2000). Phenomenological research requires an empathetic attitude of wonder
(Wertz, 2005). Individuals share their life narratives as a coherent account that represents a final statement about his or her experience (Rolland, 1994). The researcher attends to what is experienced and also how the experience is expressed through observing bodily changes, perceptions, emotions, linguistics, and behavioral responses (Wertz, 2005). This sharing of experiences is the basis for subsequent reflection on meanings and experiential processes (Wertz,
2005). We are interested in life and how it’s evaluated in the here and now as well as life experienced on a continuum (Clandinin &Connelly, 2000). Narrative is concerned with doings and goings. The researcher is focused on the meaning of the situation as it is given through the participants’ experience (Wertz, 2005). Whether it is recorded through research or therapy, our life stories are the oral records of the lives we lead. The public is attracted to psychotherapists who work narratively, therefore a theory of narrative psychology was created based on what practitioners say and do (Clandinin &Connelly, 2000).
Narrative thinking alters what the observer observes (Clandinin & Connelly, 2000).
Learning to think narratively is at the boundaries between narrative and other forms of inquiry
(Bernard & Ryan, 2010). In narrative inquiry, people are looked at as embodiments of lived stories (Clandinin & Connelly, 2000). We leam the most about narrative inquiry through engaging in narrative investigation (Bernard & Ryan, 2010). Narrative inquiry is a process of learning to think through the lens of experience; to attend to lives as lived through story, and to position inquiries within a metaphorical three-dimensional space. As a researcher, it is impossible to remain silent or to present a perfect, idealized, moralized self (Clandinin & Running head: CANCER SOCIAL SUPPORT NARRATIVES 48
Connelly, 2000). When researchers enter the field, he or she will have a direct impact on the
experience. The investigator is constantly negotiating, reevaluating, and maintaining flexibility
and openness to an ever-changing landscape (Bernard & Ryan, 2010). The purpose and what
one is exploring and finds puzzling, change as the research progresses; working with participants
shapes what is interesting and possible in the field (Clandinin & Connelly, 2000). If the
researcher is inquiring about life in a hospital ward, he or she becomes a part of life on the ward
and is therefore becoming a part of the experience being studied. Narrative inquiry is relational.
Some believe that the researcher must be fully engulfed or involved in the experience in
order to fully understand the lives being explored. Others believe that becoming fully involved
compromises objectivity (Clandinin & Connelly, 2000). Advocates for distance will state that the
researcher should not fall in love with his/her subject. The critique is in the inevitable problem of
influencing the observed; Clandinin and Connelly describe it as shaping the parade as we study
it. Participants are shaped by the inquiry and the experience of being a part of the researcher's
experience. Their experience during the interview will be affected by the nature of inquiry. The
phenomenological researcher probes beyond explicit meaning to reveal implicit dimensions of
the phenomena (Wertz, 2005). Both the researcher and the participant come to a new
understanding as a result of what occurs during the inquiry (Clandinin & Connelly, 2000).
Research and therapy have to be conducted in an emotionally safe environment for the participant. Research interviews have an inequality (Clandinin & Connelly, 2000), similar to the power dynamic in the therapeutic relationship. The conditions of the interview shape the experience. Anderson and Jack (1991) wrote that attention should be shifted from information gathering where the focus is on the right question, to interaction, where the focus is on the Running head: CANCER SOCIAL SUPPORT NARRATIVES 49
experience of the process. The participant is both the initiator and a collaborator in the process,
not just an object to be studied (Engel, 1996).
Phenomenology
Phenomenology does not form theories, operationalize variables, or test hypotheses
(Wertz, 2005). Phenomenology is conscious knowledge. It is what is observed through
perception, sensing, and immediate awareness (Moustakas, 1994). Phenomenology respects
individual’s points of view and honors the multiple perspectives found in the world (Wertz,
2005). Contemporary phenomenology is based on the philosophies of Edward Husserl (1931,
1960 & 1974). Husserl believed that preconceived notions distort human existence and reduce
the depth of experience (Brown, Sorrell, McClaren & Creswell, 2006). This methodological
procedure does not evaluate or imply that knowledge is true or false (Wertz, 2005). From a
phenomenological perspective, an object’s actual existence is irrelevant (Moustakas, 1994). This
method is neither inductive nor deductive; it describes characteristics, clarifies meaning, and
gives structure to the subject under investigation (Wertz, 2005). It is a transcendental
perspective, suspending preconceived notions; we view the experience through fresh eyes
(Moustakas, 1994). Transcendental phenomenology assumes the following: knowledge begins
with experience; judgments regarding what is real are suspended, meaning making is intimately
tied to consciousness, and a rejection of the subject-object dichotomy. The phenomenological
research is open to alternative explanations to encapsulate the experience of the same event
(Rychlak, 1982).
Experience
Experience is what we study narratively, because narrative thinking is a key form of experience and a key way of writing and thinking. Experience is both contextual and ecological Running head: CANCER SOCIAL SUPPORT NARRATIVES 50
(Wertz, 2005). An experience is temporal and experiences collectively are progressive and
sequential (Rolland, 1994). The human experience unfolds within a larger temporal process that
includes the past, present, and future (Wertz, 2005). The phrase experiencing the experience is a
reminder that narrative inquiry is aimed at understanding and making meaning of experience
(Clandinin & Connelly, 2000). This is the baseline "why" for social science inquiry (Bernard &
Ryan, 2010). The answer to the question of why researchers use narrative inquiry is that
narrative inquiry is a way to think about experience (Clandinin & Connelly, 2000). Dual
experience, experiencing the experience, and being a part of the experience captures the
openness of the experience (Rolland, 1994). Reality is defined through the individual’s unique
perspective (Brown, et al., 2006).
Perception
Kockelmans (1967) considers perception to be the primary act of consciousness. Perception
is a primary source of knowledge and cannot be scrutinized (Moustakas, 1994). Perceiver effects
reflect the extent to which participants differ in their ratings of supportiveness (Lutz & Lakey,
2001). From a constructionist perspective, there is no clear difference between fact and fiction.
Individual truth is absolute. With illness and other narratives, context makes all the difference.
The formalistic framework states that things are not simply what they are, but what our
framework or point of view, perspective, or outlook makes of them (Clandinin & Connelly,
2000). Having a primary relationship does not determine the perception of support. It is the quality of the relationship that has the most influence on patient perception (Brod et al., 1998; cited in Hodgson, Garcia & Tyndall, 2004). For the individual, there is only one truth, what I know, think, feel and perceive (Moustakas, 1994). Perception is reality. Individuals have preset expectations based on contextual design. Running head: CANCER SOCIAL SUPPORT NARRATIVES 51
Owen and colleagues (2006) observed a significant interaction between emotional suppression and the use of cognitive words on mood disturbance. An increase in disclosed mood related changes was associated with greater levels of mood disturbance. The meaning individuals attribute to his or her cancer is a key factor in their ability to cope with the diagnosis and side effects (Weisler, 2006). Narrative representations of aging, illness, and dying provide a way of exploring the multiple meanings and vices that are expressed during transitions in life course
(Kaufman, 2000). Knowledge is tied to assumptions, interpretation, or point of view (Rychlak,
1982). Narratives provide context. It offers a space for existential discourse, allowing a forum aimed at the search for the authentic self and its desires in the midst of the illness (Kaufman,
2000 ).
Whereas a narrative study captures a report in the life of a single subject, a phenomenological study describes the collective or common lived experiences of several people
(Creswell, 2012). In order to discover meanings of experience as understood and told by each of the participants, this study uses an exploratory qualitative approach drawing from phenomenology through the use of multiple interviews. Interviews are useful when the phenomenon in question is complex in structure, extensive in scope, and consist of subtle features that would prohibit participants from spontaneously offering meaningful details through more structured methods (Wertz, 2005). When shifts in the narrative occur, the participant and researcher can explore associations and meanings that connect different aspects of the personal story (Reissman, 2008). Phenomenological research methods are structured according to the intrinsic demands of the psychological realities of the individuals being studied (Wertz, 2005).
Phenomenological researchers capture the dimensions that all of the participants have in common as they experience the phenomena (Creswell, 2012). Themes will be developed from Running head: CANCER SOCIAL SUPPORT NARRATIVES 52
the shared experiences of the study participants and ultimately connected to create a
comprehensive picture based on participant response. The intent is to summarize individual
experiences with the phenomena to a description of a universal essence with the experience
(Creswell, 2012). The researcher develops a composite description of the experience that reflects
the collective narrative of the individuals in the study (Creswell, 2012). The descriptions are
neither an explanation, evaluation, nor an analysis (Moustakas, 1994; Riessman, 2008;Creswell,
2012). Moustakas’ (1994) transcendental or psychological phenomenology focuses less on
researcher interpretation and relies more on the stories told by participants (Creswell, 2012).
Moustakas follows closely in the traditions of Edward Husserl (1931, 1967 & 1970) by
encouraging researchers to set aside his or her previous experiences and assumptions, allowing
the researcher to view the phenomena from a fresh perspective. This method contributes to the
phenomenological mission of therapeutic inquiry; the understanding of lives in health, illness,
and transition (Sandelowski, 1991).
Problem and Purpose Overview
Cancer is a physically and emotionally stressful event that has a direct impact on personal relationships (Helgeson & Cohen, 1996). People living with cancer may have difficulties accessing the social and emotional resources they need (Dakof & Taylor, 1990; Helgeson &
Cohen, 1996). A retrospective study by Reynolds and Kaplan (1990) revealed that men with few social connections showed significantly poorer survival rates than men with higher reports of support. Particular actions can be perceived as helpful when coming from some people as opposed to others in the social network (Dakof & Taylor, 1990). Patients have identified emotional support from family, friends, and health professionals as the most helpful type of support and identify informational support as helpful when information is coming from health Running head: CANCER SOCIAL SUPPORT NARRATIVES 53
care professionals, but not friends and family (Dunkel-Schetter, 1984; Helgeson & Cohen, 1996).
The study by Reynolds and Kaplan (1990) identified that a major risk factor for women was not
only being isolated, but also the perception of being alone in their diagnosis. A study by Peters-
Peters-Golden (1982) discovered that potential caregivers would make attempts to “cheer up” the
patient, while the majority of patients stated that “unrelenting optimism” was disturbing. Healthy
individuals believed that patients’ primary concerns were cosmetic, whereas most patients cited
concerns regarding recurrence and death (Helgeson & Cohen, 1996). Dunkel-Schetter (1984)
found that 87% of patients said they coped with their illness by keeping thoughts and feelings to
themselves.
Research Question
The following questions guided this inquiry: Who or what has been most helpful
throughout your cancer journey?
Population and Sample
The sample consists of five individuals selected from participants affiliated with support
programs and oncologists’ offices in the southeastern region of the United States. The in-depth
nature of the phenomenological interview method lends itself to a small sample size (Moustakas,
1994; Creswell, 2012; & Riessman, 2008). The sample was drawn to capture broad variations in
demographic and clinical characteristics including tumor site, age, occupation, disease
progression, and type of cancer treatment that has been received. Cases were selected to be representative statistically, rather to develop a theoretical argument. The arrival of chronic illness
initiates a process of cognitive reorganization; defined as meaning-making (Riessman, 2008).
Data were collected over a period from August to December 2014. An in-depth interview conducted in a semi-structured manner will be delivered. Open-ended questions will offer a Running head: CANCER SOCIAL SUPPORT NARRATIVES 54
space for respondents to express his or her thoughts and feelings openly. All interviews were
based on a theme guide to give structure to the conversation: (1) experiences connected with
living with cancer. (2) Perceptions of social support. (3) Self-evaluation of coping skills. (4)
Reported changes in social support and ability to cope with the diagnosis, treatment, and/or
change in social structure. (5) Thought, perceptions, and feelings regarding the future.
Participants were recruited through support groups, social programs, exercise, and stress
reduction classes offered through community service and hospital affiliated centers. A snowball
convenience sample was generated from a sample of 250 potential volunteers based on diversity
of tumor site, ethnicity, and participant availability. The sample pool was then dwindled down to
eighteen potential subjects based on participant accessibility, time, gender, ethnicity, and tumor
site. This is a nonrandom, purposive sampling method, based on the assumption that the
researcher intends to discover, understand, and gain insight from a selected sample intentionally
compiled in order to glean the most information (Hodgson, Garcia & Tyndall, 2004).
Participants were selected for variations in race, gender, age, marital status, education, and occupation, stage of cancer, treatment status, and tumor site. Upon initiation of the study it became clear there were not differences in responses that could be associated with race, gender, treatment, or economic differences. It was determined that five participants was a sufficient sample size for an in-depth exploration of cancer narratives. The five study participants were individually selected for their variations in demographic and medical experiences. Participants were asked to sign a form describing the purpose of the study (Appendix L), his or her voluntary commitment, and the intent that the material will be used in a dissertation and future publication.
Participant anonymity has been insured through the use of pseudonyms and the modification of any information that is non-essential in understanding the role of social support and illness. Running head: CANCER SOCIAL SUPPORT NARRATIVES 55
Institutional Review Board (IRB) approval was completed through Mercer University (Appendix
K).
The participants reported having been diagnosed with cancer between 15 months to 4
years (M= 29 months/ 2.416 years). At the time the time of the study, two participants had been
diagnosed with Stage 2 cancer, three participants were diagnosed with Stage 3 cancer, and zero
participants were diagnosed with Stage 4 cancer. Specific tumor sites are listed in the
introduction of each participant story. Participants ranged in age from 44 to 66 years (M= 55).
All participants have received a high school diploma. Three participants completed some college,
one has a bachelor’s degree, and one has completed masters-level education. One person is
retired (20%). The remaining four are working in some capacity. Two individuals, 40% of the
sample population, are self-employed. Three out of five participants are married, one is divorced
and currently in a same-sex relationship, and the final participant is widowed. Four participants
have children, three have adult children, and one has adopted children under the age of twenty-
one years at the time of the interview.
The exclusions criterion is as follows: individuals with stage 0 disease (i.e., diagnosis
with ductal carcinoma in situ or lobular carcinoma in situ) or previous psychiatric history that
compromises communication or the capacity to give an informed consent. Each participant
underwent systemic treatment (either chemotherapy, radiation therapy or a combination of the two) many also had surgery. Receipt of chemotherapy includes both infusion and pill methods of entry.
Data Collection
Five interviews were conducted using phenomenological methods of inquiry as a guide for analysis. Core themes from the significant statements were extrapolated along with the Running head: CANCER SOCIAL SUPPORT NARRATIVES 56
corresponding meaning units. The essence of experience was explored in light of social cognitive
theory. During the transcription phase, participant names and identifying details were changed to
preserve confidentiality. The exhaustive description allows the reader to surmise the essence of
the phenomenon under investigation (Hodgson, Garcia & Tyndall, 2004). Two additional follow-
up interviews were conducted with each individual. The initial interview, lasting for 1-2 hours,
captured the initial essence of the experience with emotional support while living with cancer
and was conducted between August and October 2014. The second interviews, which began in
October, were intended to verify the saturation of data; that is the redundancy in findings that
fulfill the research goal. At this time, participants had the opportunity to review the transcriptions
for accuracy and intended message. One participant was uninterested in reviewing the transcript.
The final interviews are intended to verify the transcript synthesis results and were conducted in
November and December 2014.
Analysis
Narrative analysis refers to a group of methods for interpreting texts that have a common
storied form (Riessman, 2008). Data analysis followed the procedures of phenomenology
described by Moustakas (1994). The transcripts were read to extrapolate comments relative to
the experience through a horizonalization process. Significant words and phrases were extracted
from each transcript and grouped according to what the researcher believes is their intended meaning. Overlapping or redundant statements were eliminated as much as possible without
losing intent. Meaning units were grouped from the list of significant statements. The meaning units were then clustered into themes reflecting a collective experience. Through follow-up interviews, themes were verified to determine if the phenomenon maintains its original intent.
Finally, a composite description of the essence of the experience was developed to reflect the Running head: CANCER SOCIAL SUPPORT NARRATIVES 57
entire group. Verification was done through sharing the initial transcriptions along with the
composite summary with the interview participants and receiving feedback regarding its ability
to capture their collective phenomenological experience.
Data were analyzed through thematic analysis to discover the connections among
interview participant experiences, common turning points, and potential epiphanies. The themes
capture the essence of the experience, but are not intended to be generalized to everyone who has
experienced the phenomena. Analytic decisions are important; they shape the interpretation and
illustrate the roles that both the participant and the researcher play in the construction of the
narrative (Riessman, 2008). According to Polkinghome (1989), the reader should leave with a
sense of understanding what it is like to be an individual living with cancer (Hodgson, Garcia &
Tyndall, 2004).
Structured interviews are the least common form of narrative inquiry style due to their
non-relational quality. All interpretations are equally valid. Analysis is the search for patterns in
data and for ideas that help explain why those patterns exist. As we analyze the data, we continue
to look for alternative explanations for the phenomena (Bernard & Ryan, 2010). Thematic
analysis is used to explore the common topics that could be identified across interviews
(Makabe, 2000). These common topics are the threads that hold together the experiences of
patients in dealing with their diagnosis as well as their perception of the role of others. The transcripts are indexed by each participant and the themes were identified within each topic (see
Table 1). Running head: CANCER SOCIAL SUPPORT NARRATIVES 58
CHAPTER 4
PARTICIPANT 1
Introduction
Participant one is an African-American female age 66 years and 11 months. She was
diagnosed with breast cancer in May of 2013. She received a lumpectomy the same year and
completed thirty rounds of radiation prior to beginning a regime of Tamoxifen, which she will
continue to take daily for the next 5-10 years. Participant one, who we will refer to as Ann,
retired after a 40-year teaching career. Ann is a widow and has three adult daughters. Her eldest
daughter lives twelve miles away from Ann, her younger daughters live in on the east coast.
Individual Themes
Theme 1 Support
Family. This particular theme reflects how she thinks and feels about family. Her position
is that her “family support is wonderful.” In reference to her eldest daughter, Ann states, “she's,
she's, really she's my strong person. She says, okay, now what do we do? You know, what’s the
next steps? Where do we go from here, you know?” Ann relies on her eldest daughter for
support, yet later states the following:
And like I tell my daughter, I say okay, it’s time for me to go home now. You know, or
its time for you to go home now. And you know what, she accepts it and she goes, or I go
or whatever. And I said umm, when I first moved here she said, “mom you don’t have to
buy a home right away, you don’t have to move right away, you can stay with us.” She
said, “we’ve got plenty of room,” and they do. She said “you can stay with us a week,
month, six months.” And I said, “oh, hell no!” I said “I need to get my own space,” you Running head: CANCER SOCIAL SUPPORT NARRATIVES 59
know. Because we don't live that far, she lives in (sic) the unincorporated portion of the
county and I live, you know, here. So, its like only 12 minutes apart, but at least we’re
apart. You know, because we but heads sometimes, you know, and umm, it’s good to
have that separation area.
Despite feeling close to her daughter and relying on support from her, Ann draws clear boundaries that she has deemed respectful of the relationship. As it relates to her other daughters, it is apparent there are fewer expectations of the youngest as opposed to the eldest and middle child.
But my third daughter hasn’t been as, you know, she lives in Baltimore, so she hasn’t
been as involved. But the one in D.C came and stayed, not D.C, but Northern Virginia,
she came and stayed with me in the initial, when I had the surgery, she came and stayed.
And she came back and stayed several weekends. But the one here, sometimes I have to
remind her “I am still the mom; you’re not the mom.” You know, but she does a good job
of making sure I’m okay, and checking in on me, but giving me my space too.
Ann appears to be very close with her late husband’s family. There is an intimate familial bond between Ann and her in-laws. She describes her relationship with his siblings as being
“connected” and close:
We stay connected. They call me little sis, you know, I’m the youngest one. It’s just like,
it’s never been that in-law kind of thing. It’s always been a sisterhood... And so, during
the, when I told them about cancer, they were kind of in shock. But I had another sister-
in-law who had breast cancer. She had [a] double mastectomy, so she, when I told her she
just kind of like, she just said, whatever you need baby, I can talk to you about it because Running head: CANCER SOCIAL SUPPORT NARRATIVES 60
I been there done that.. .you know. So that was good. But I had immediate family and
extended family support.
Ann describes her relationship with her biological family as not as close in comparison, but she had an experience over the summer that helped to renew that bond.
We all-we [are] all closer now. I went to a family reunion this past weekend, umm my
family, umm in North Carolina and you talk about; it was [the best] one I think I’ve ever
gone to for that family. Because it was it was just a lot of love, because we, our family
had been challenged with a few deaths last year, just a lot of different things, so it was a
lot of love, a lot of caring, a lot of sharing in that room. There were about 150 of us and
umm, everybody was kind of like embracing one another. You know, because you looked
at the person to the left and to the right, you know, and that person may not be here next
year. So, um, that was I came away from that feeling very-very, I guess close to my
family, you know and I wasn't, they, that part of my family were not involved in this
whole [process], except they may pray for me, but they didn’t call or touch base, or
anything like that, you know, but they knew. But, after this weekend, I got a renewed,
you know, I got a new attitude about my family. Maybe they are caring, they do, you
know, we do love each other, you know, it’s just that I guess, we had a disconnect for
years, because I moved away and a lot of them moved away, so we, sometimes I’d come
to the family reunion and sometimes I didn’t, so you know it was kind of a disconnect.
But, I felt very connected this weekend.
In the face of loss and personal challenges, both Ann and members of her extended family found meaning in the experience and a renewed appreciation for family and the fragility of life.
Friends and Neighbors. This theme focuses on the support she received from both Running head: CANCER SOCIAL SUPPORT NARRATIVES 61 neighbors and friends. Despite the fact that she has lived in the area for a year prior to her diagnosis, Ann mentioned the prayers, food and support she received from her neighbors who she described as “wonderful.” The more striking stories are in reference to her friends and her ability to pull together her support network.
I have a friend and I tell him all of the time, I say and you know, you call me everyday,
during this time, and he lives in California, and I say “you have no idea how many times
you pulled me back from the ledge.” I said, just by something you said, you know, hey
okay, and sometimes you just need that little jolt.
Ann places a large emphasis on the importance of friendship and connection. Upon her diagnosis, she began reaching out to individuals to gamer both emotional as well as task support.
[I] have friends who we used to talk maybe once a year. But you know what, when we
talked we picked up and it was like we never missed a beat, you know, because that's just
how the relationship is, you know.
The emotional support is not centered on her diagnosis. She is very clear about the fact that it’s often more important and normalizing to have someone visit to discuss anything other than cancer. She continued the discussion with highlighting the importance of having a diverse network or team of individuals who could provide various levels of support.
And they don’t necessarily talk about; we don’t necessarily talk [about] this journey too
much unless I want to. It’s about lots of other things, you know, and I have one friend
who made sure I was always, that I kept active. I guess, really, I can’t say one thing over
another. Because everybody brought something, every part of this whole network has
brought something different. Running head: CANCER SOCIAL SUPPORT NARRATIVES 62
Physicians and Hospital Staff. This theme represents her experience with her physicians as well as the hospital staff. Ann, like most of the participants interviewed, has a primary physician who she trusts as well as oncology physicians who seems to listen to her concerns as well as give rational explanations for her treatment process. This level of respect received from the physicians and their staff allows the patients to feel like they have an integral role in determining their course of treatment and their voices and opinions are being considered.
I told the doctor that I wasn’t taking that. Because I didn’t want to take the chance.
(Interviewer) So, you chose not to take tamoxifen? (Participant) No, I did. He talked to
me and he said you should, you should just try it. So, I haven’t experienced any of the
side effects.
Ann initially did not want to take the five-year follow-up medication, but her confidence in her physician persuaded her otherwise. It would appear that she had legitimate concerns about the side-effects, the doctor heard her concerns and discussed the benefits of taking the medication, and Ann was ultimately persuaded to try the medication for a period to make a more informed decision regarding her long-term course of action. Ann is a well-educated and informed patient who is aware of her rights to express her concerns and agree to treatment. “They told me what was going to happen, then I was okay.”
Theme 2 Coping and Optimism
Ann emphasizes the importance of having a positive attitude. It would appear when she was diagnosed she remained very uplifted, encouraged, and confident that her prognosis was good and that she would move through the treatment process without further problem.
I said, so no I'm not falling all out on the floor. I’m not screaming and hollering. I said,
no! I said, nobody wants the C word, but it happens. And because it happens, you gotta Running head: CANCER SOCIAL SUPPORT NARRATIVES 63
deal with it. The fear of the unknown was what bothered me just-just a little bit, but I had
great doctors, my family support is wonderful, my neighbors were wonderful.
She did not take her diagnosis lightly, but she was able to find a perspective on the situation that allowed her to move forward. “It didn’t feel quite so bad, but nonetheless it was still cancer, whether it was zero or ten.” She states “Yeah, I don’t tell anybody that I don’t have pity parties sometimes, but I don’t stay there.” One of her primary resources was her ability to pull together her network of support. “It was comforting to know that I have a support system here.” Ann also remains busy in a way that incorporates positive distractions such as exercise, participating in her church, and giving back to others. “I take advantage of every possible thing that I can. And, uh, that’s what keeps me going.” She copes through activity:
If I needed something, if I find myself in a place, and depression was one of those things
they had warned you about, if I thought I was getting a little depressed, I would get up
and do something.
Ann even recognizes the positive things that have come out of her diagnosis. She appears to have taken on a perspective frequently seen in individuals who have experienced emotional growth following a traumatic event. It has “given me a different perspective on a lot of things.
Really on life and how fragile it is.” She goes on to say “it has umm, really-really strengthened me as a person. I think I’m stronger, because of what I went through.” One could speculate that her positive attitude has helped her move through her diagnosis and treatment. “I’m very optimistic about the future.”
I think this whole experience if nothing else, it’s like I said, first of all I value life, I value
good health, and I value friendship, I value love, the I just, my Christian relationship has
been strengthened as well. Running head: CANCER SOCIAL SUPPORT NARRATIVES 64
Theme 3 God, Church, Religion
As it relates to her ability to cope with her diagnosis, Ann gives credit to her faith. “I prayed about it and I said I have peace about it. And I said it is because of my faith in God that
I'm able to accept.” She also speaks to the role that individuals in her recently formed church community played in her healing and adjustment.
But they did offer the support, they did offer the prayers, they did offer the phone calls,
the text messages and all of that, (sic) But, yeah, my church was very, very, very
supportive, as much as they knew about me.
According to Ann “it’s is-is my own faith, you know, that that I know that kept me going.” On several occasions she stated that her “Christian relationship has been strengthened as well” as a result of her diagnosis. Faith has played a major role in her coping with cancer.
if 1 didn’t have my relationship I guess my relationship with Jesus Christ it would have
been a lot harder for me. You know, I know people deal with it and they don’t have that
but, for me personally, I think it would have been a lot harder.
Theme 4 Group Support
Cancer Wellness. There are a few medical systems within the United States that offer comprehensive complementary programs to patients and survivors free of charge. Ann participates in the exercise classes, cooking demonstrations, crafting classes, and massage therapy in a group setting. She is not a regular participant in any of the scheduled therapeutic support groups, but seems to benefit from the relationships she has developed through the courses listed above.
I mean, you couldn’t ask for a better person to, to, to hit a class then Kurt, because he
pushes us, you know, but he also knows. He also has the compassion for us. But he also Running head: CANCER SOCIAL SUPPORT NARRATIVES 65
knows some days may not be so great now and he accepts that you know, but he wants
[to] make sure we work to our potential and I love that and so when I missed the classes
or the people, I don’t see them, then you know, you kind of become concerned about
them.
She goes on to explain the benefits that she receives from an environment filled- with other survivors. First she states “it’s that camaraderie,” then she goes on to further explain the following:
That they would help me get through that and this is what I like most about this...this is
what I like about Cancer Wellness here is the support that survivors, family, caregivers
all have here and they can take advantage of, you know, um, so, it just does total body
even massages. Like just a few weeks ago I told Maude, I have a real problem with my
neck and shoulders and I got a head and neck massage and it was just great.
Support to others. It is important to Ann that she replicates the support that she receives from her network by giving back to others in her environment. “When I hear of someone new that’s just starting to go through this, I try to offer words of encouragement.” When asked how she supports others, she stated “I try to give them something, some thing that will help them that day.” During the follow-up session she added:
Umm, first of all I tell them I’m praying for you. Then I tell them something like, you
know, I went through that, so I understand, you know, what you are going through and I
understand the emotions, I understand the challenges, I understand what you may be
thinking. Especially if it is breast cancer.
It is important to her that they know she can be reached at any hour to provide verbal support. Running head: CANCER SOCIAL SUPPORT NARRATIVES 66
You can call me anytime. And my phone number is not off limits. I tell people, I say, you
can call me anytime. I said, I’m retired, so if you wake me up, I can go back to sleep. Or
I’ll sleep the next day or whatever. Umm, like I said I try to tell them, I know it’s not
easy, I know its not easy, but you will get through this. It will, it will, you will get
through it. Now how you get through is maybe different then how I got through, but you
will get through it. And you have people who love you and care about you and I am one
of those people. I care about you. And, what you’re going through now, so that’s why I
tell them they can call me.
Passion Topic: Building a Network
As previously mentioned, it was important for Ann to build a network of support once she was diagnosed. When asked if she had her support system in place prior to her diagnosis, she stated that she was aware of individual strengths and was able to tap into them once she needed them. According to Ann, “everybody brought something, every part of this whole network has brought something different.” She pulled from a group of people with various skills.
Yes, it is it is because I do have a very diverse network and I have it as far as; a diverse
network, of diverse people, of diverse races, as well. You know, umm, so I can also, I
have always been a people person, so I have I have friends, then I have friends, and then I
have relationships, and I have acquaintances and they come in all colors, you know, and I
can- I can have a conversation with-with the ditch digger and it is okay and I could have
one with the corporate boss and it’s I can relate to those people, you know, but I guess
because I do have a wide net to draw from that has been very-very helpful. But then you
also, you have, in this wide net I do have a core of people, who I hold close to me and
they hold me close to them. And uh, and that’s about maybe 4 or 5 people, you know, I Running head: CANCER SOCIAL SUPPORT NARRATIVES 67
know I can say anything, I know I can do anything, and they are going to be there for me,
you know, they are gonna be there for me.
She clearly recognizes not only the strengths these individuals bring, but also the way the relationships have benefited from her ability to ask for and utilize her support.
It was a fragmented team, but when I got diagnosed, I kind of pulled it all together.
Definitely this has-has brought a closeness in different relationships that would maybe
not have been there. But it’s just like, it was there, but like I said, fragmented. Over here
somewhere, over there somewhere, but this pulled it all together.
Survival Philosophy
Ann has maintained a positive attitude regarding her cancer journey from the time she was diagnosed through survivorship. Her optimism, faith, and ability to solicit support through a network of friends, family and physicians can be credited to her success. Below is a statement that captures her overall philosophy:
Attitude is just a part of the whole, makes the whole process, you know, it can define the
whole process, your attitude. And if you’ve got a great attitude then you’re going to have
great success. So you just kind of [have] to keep it on a, look at the glass half full. Instead
of half empty, you know, and that’s kind of like my philosophy. You know, no matter
what’s thrown at me. When the world throws me lemons, I throw them back, and
demand chocolate. So, umm, it’s, I talk about attitude a lot because I think attitude is so
very important. I think it is important that people know that when they have been
diagnosed that sometimes you, they say umm, you take one day at a time, sometimes you
can’t do that. Sometimes you have to take one hour at a time, sometimes you have to take Running head: CANCER SOCIAL SUPPORT NARRATIVES 68
one minute at a time, you know, it's is no magical thing, you know, but you have to do
whatever you need to do to get through what you’re going through.
CHAPTER 5
PARTICIPANT 2
Introduction
Participant number two is a sixty-four year old married white male living with primary myelofibrosis, a rare form of bone marrow cancer. Participant two, who will be referred to as
Jack, was diagnosed in 2011 after experiencing fatigue and discovering what he describes as a softball sized lump in his side. He also had a small melanoma removed from his face in 2013.
Jack received chemotherapy treatment for his myelofibrosis from MD Anderson Cancer Institute in Houston, Texas. MD Anderson has placed Jack on a clinical trial and he will continue to take nearly a dozen pills per day to keep his cancer at bay. He was told if he stops taking the medication for two weeks, his cancer will likely return. Jack is a small business owner and he has four adult children as well as six grandchildren. Two of Jacks children reside near him; he has one daughter who is currently living in in Africa, and a son currently living and working in
Europe.
Individual Themes
Theme 1 Support
Family. Jack describes his family members as supportive, but highlights more task related support than emotional support. His family has been actively involved in assisting him with the insurance related concerns he had throughout his treatment. There were few, if any, emotive details in his narrative. Running head: CANCER SOCIAL SUPPORT NARRATIVES 69
They’ve been great. They have been really good. [My] wife especially, she has been
very-very supportive on the thing. And, umm, I can’t say too much good about what she
has done. They have been just-just extremely supportive of, especially when I had
problems with the insurance company.
Faith in physicians. Jack speaks highly of his doctors, both the local physicians as well as
the experts at MD Anderson Cancer Institute in Houston Texas. Jack seems to appreciate his
physician’s ability to be forthcoming and straightforward regarding his disease and prognosis,
(sic) The local doctor, (sic) he was just most encouraging. Or not encouraging, I don’t
know how to say it. He was honest, but he was very sympathetic. I mean, or empathetic
would be a better word.
Because his diagnosis is rare, Jack was initially seen at two local hospitals, and finally was
placed on a clinical trial at MD Anderson.
I felt like the doctors here (sic) were very honest. They did not have a treatment for it.
And they told me they didn’t.
Although the physicians practicing at two local hospitals were unable to assist him further he
maintained the belief that he has “been very fortunate in having good care.” He is satisfied with
the treatment that he is receiving from MD Anderson and said that he has “confidence in [his]
physician out there.”
Theme 2 Coping and Optimism.
Similar to Ann, Jack faced his diagnosis with a tremendous amount of hope, confidence, and optimism. “When they told me I had cancer I didn’t feel like I was ready to die.” He also made the following statements, “I don’t know, I just had a feeling like you know, we’re going to Running head: CANCER SOCIAL SUPPORT NARRATIVES 70
get through it some way” and “I always feel like things are going to work-out.” Jack’s primary
physician cried when he delivered the news of suspected cancer. Jack laughed in return.
I said, I just don’t think this is going to do me. I mean, I just felt like I was going to pull
through it somehow or another. And um, went home and told my wife and she got all
upset. And um, I don’t know, I just had a feeling like you know, we’re going to get
through it some way.
Jack went on to say “I’ve got faith in God and I really just, uh, my family, I really don’t feel like
I’m ready to leave them yet.” His determination to beat his cancer seems to have given him a
heightened appreciation for the present moment. It “sounds sort of morose, I guess or macabre,
but I’ve also enjoyed life more because I don’t worry about things in the future anymore”
Infinite Treatment. Jack will receive pharmacological treatment for his cancer for the
remainder of his life. If for any reason he discontinues his medication from MD Anderson, it is
speculated that his cancer will return and he will die. He described his experience as follows:
Yes, I’m in a clinical trial. I will be in treatment indefinitely. They, umm, the
myelofibrosis that I have is stable, but its not in remission. If you quit taking the
medications; I take 10 chemo pills a day of one type of chemo called Roxilimidid, which
is something they just, they are working on now. They just came out with and I take one
Revumed a day for 21 days and have to go off of it for a week. And, umm, my
understanding is if you go off the drugs even for a week or so, uh, it starts coming back.
Theme 3 Efficacy
Family Advocacy. Jack speaks a great deal of the task support that he received from his
family. Most of their support came in the form of advocacy when his insurance company refused to pay his medical bills because he was receiving treatment outside of the state. Running head: CANCER SOCIAL SUPPORT NARRATIVES 71
They were writing letters, had people sending stuff to my insurance company and that’s
another story, but they couldn’t have been more supportive. I mean, they were ready to
file suit and everything against these people.
His son wrote “letters to the president of the insurance company,” while Jack’s daughter and her friends seemed to be calling the company on a daily basis for an extended period of time. Jack
“even got the State Insurance Commissioner to promise to call the president of the insurance company” on his behalf. According to Jack “[the state insurance commissioner] said I’m going to call the president of the company and I’m going to see what I can do for you.”
Self-Advocacy. Jacks self-advocacy began with his outreach to family for support, his calls to the insurance company, as well as his ability to command a meeting with the state insurance company. He began by calling his attorney, who recommended that he speak with an elected official.
I went to my, uh, State Representative, and he got me an appointment with the state
insurance commissioner and we met up at the capitol.
When he did not receive a positive response from the insurance company, he was very clear with their representative regarding his feelings on the matter, his determination to fight, and what he believed she should do in reference to her position.
I said, well, this is something that somebody told you to do, like your boss or somebody
told you to do, to call me. She said yep. And I said, you tell your boss or whoever told
you, about this, to call me, you tell them that not only am I not going to stop, but I just
now got my second wind. And I said you haven’t heard nothing yet. I said I just walked
out of the office of the state insurance commissioner. And uh, if I’ve gotta go to hell and
back, you know, to do this, you know, we’re in a, you’re in a, y’all are in a fight. I said, Running head: CANCER SOCIAL SUPPORT NARRATIVES 72
I’m going to tell you one more thing too. You-you, somebody told you to call me, didn’t
they? She said yeah. I said, I’m’a tell you what you need to do. She said what? You need
to quit your job with that company. She said, well, what do you mean? I said, you’re
doing the same thing that the Germans did in the concentrations camps.
Theme 4 Acceptance
Jack was very accepting of his diagnosis. As previously mentioned, upon his diagnosis
Jack stated of his doctor “he started crying. He said I think you’ve got CLL or CLM, or
something like that. And uh, I just started laughing.” His attitude from the beginning was “I said,
I just don’t think this is going to do me in. I mean, I just felt like I was going to pull through jt
somehow or another.” He was not worried about what would come. He seemed to be taking
matters one-step at a time. “I don’t worry about the future that much. Maybe that’s a good thing
that came out of it.” He also seemed to accept the diagnosis as a part of life. “So I guess once
you get past 60 its sort of a part of life.” Even when he believed that he would not be able to
continue on his medication he stated the following:
My wife got all upset, she was going to sell the house, to do this, and the kids started
calling, and I said y’all look, its ridiculous. I mean, you know, I’ll just, we’ll just forget it.
Passion Topic: Insurance Advocacy
Jack became most passionate and spent the vast majority of the interview discussing his concerns and frustrations regarding his insurance policy. Due to the rare nature of his disease, he was referred to a specialist at MD Anderson Cancer Institute in Texas. Fortunately for Jack, MD
Anderson is currently running a clinical trial for which he is eligible. He rightfully credits MD
Anderson for saving his life. After forty years of paying an insurance policy, the insurance company refused to reimburse his bills for out of state treatment. Jack was clearly frustrated Running head: CANCER SOCIAL SUPPORT NARRATIVES 73
when he reflected on this experience. “This policy [was] junk and I didn’t know it until I got
sick.”
My insurance company said they weren’t going to cover any of my MD Anderson bills
and my first day was like $10,500. And I asked them why and they said I don’t know, so
I called my insurance company and they said well, see I’m in business for myself, so I
have to buy my own personal insurance policy. And I’ve been paying for my own
insurance policy for like 40 years. Never collected anything on it, and I called them up
and they said, well on page 35 of your policy, I think it was, uh, it states that you have to
receive treatment in the state. And MD Anderson, of course is not in the state, so we’re
not going to cover any of your MD Anderson. So I said, people here can’t do anything for
me. And, so we had to go around with that. And um, and also on the front of my medical
policy, it said, uh, medical and pharmaceutical. And to be honest with you, I didn’t read
the whole policy. I just read the front cover, I know what the deductible is, I know what it
cost to pay it every month. And the policy is 95-100 pages long, almost 100 pages thick. I
didn’t read that. I did read the front cover, that’s what I bought. And uh, they said,
furthermore, they weren’t going to pay for any of the drugs. And uh, because on page 96
or something, it said we will only pay for drugs administered by a physician in a hospital.
These drugs are about $20,000 a month. And, so, uh, the hospital called back the next day
after I spoke with the insurance people, and you know you’ve got this bill, what are you
going to do. I said, I’ve got about a 2-3 week’s supply of drugs and after that I guess I’ll
just die. I’m not paying all this money, you know, I’m just not.
As a result of this experience, Jack has become very passionate regarding patient rights and insurance transparency. A former Tea Party candidate, Jack is now an advocate for the Running head: CANCER SOCIAL SUPPORT NARRATIVES 74
Affordable Care Act (ACA). He admits the ACA is imperfect, but also feels that it is better than leaving individuals without a treatment option. He will happily continue his treatment through the use of ACA insurance coverage until the point when he qualifies for Medicare.
There are too many people that have no insurance, or they have a job and their insurance
is with their job, and then they lose their job, so they lose their coverage and then they get
sick and lose everything they’ve got, or they’ve got a policy like mine that they have
been paying on forever and its just junk.
Survival Philosophy
Jack maintains a positive and hopeful outlook on life. He seems to take each day in stride.
According to Jack, “that’s really the way you’re supposed to live your life whether you are 20, or
30 or 40.” He also articulates and acceptance of his inevitable demise. His primary concerns as it relates to death is making sure his wife is secure and not left trying to make sense of the business they own. Jack recommends that we “[not] toil or spend [our] toil, [by] solving all this pity wise raising.” This is a reference to Luke 12:26, which has been interpreted as stating if you can not do something about a situation, do not waste your time worrying about it. Jack views his existence as “living one day at time and just enjoying life.” Running head: CANCER SOCIAL SUPPORT NARRATIVES 75
CHAPTER 6
PARTICIPANT 3
Introduction
Participant three, who will be referred to as Fran for the purpose of this study, is a fifty- six years old white female. She is a flight attendant who is married and does not have children.
Fran was diagnosed with atypical meningioma in her cerebellum in October of 2012. She had surgery and completed twenty-five rounds of radiation, but did not receive chemotherapy.
Individual Themes
Theme 1 Support
Family. Fran’s primary support came from her husband and sister-in law. Although several of her friends provided physical and emotional support over specific periods, her husband and sister-in-law were the most consistent individuals in the narrative. On several occasions,
Fran spoke of her husband’s apparent fears regarding the potential of her death or major changes as a direct result of receiving brain surgery.
He was good. I think he was, it's really sad because, I read something that he had written
that I had not seen, just the other day when I told him I was gonna come and talk to you.
He had sent a friend an email, and uh, he had talked to me a little bit about it, but he
didn't think, and I didn’t realize this until much later, he didn’t think I was going to come
through surgery. I don’t know why because the doctor never really said that. He never
said anything about me dying and my husband, for some reason he went off on that end
thinking (sic), oh you know, she’s not even going to make it through surgery. He was
really upset, but I went through it like a breeze. [Immediately following the surgery] my Running head: CANCER SOCIAL SUPPORT NARRATIVES 76
husband said he knew then that my coordination was okay because I’m shaking my finger
[at a friend]. And he said I had my attitude. So, then he felt much-much better. And then
when he came in the room and I was eating ice chips, he realized that I was going to be
okay, I think. But my sister in-law was real helpful, she would, umm, I was telling you
she would bring food a few times. But she would call, if not me [then] my husband and
text me to see how I was doing.
Lack of family support. Fran’s parents are both deceased. She has a cousin that came to help, but no immediate family beyond her husband and sister-in-law to provide support. Fran began talking about her brother’s attempts to support her in the way he could:
I have a brother and umm, he's not that much help, but he did come while I was
doing radiation and to feel like he was helping do something, he did drop me
[off], a few times. He did come and stay for a few days. And, uh, drove me to
radiation and just sat in the parking lot until I came out.
Fran attempted to remain neutral in her assessment of support provided by her brother, but the following statement made it very clear that she did not feel like her brother was capable of supporting her. More than anything, she seems to feel like he needs her help instead and his presence would be more of a hindrance than support.
He weighs about 5001bs and he's not very active. He’s got bad knees and really
somebody needs to be taking care of him. Not him taking care of anybody else. He means
well, but its just kind of like, okay, you’re here, so now we’re going to have to worry
about feeding you. That’s ugly, I shouldn’t say that, but that’s kind of the way I felt. It’s
like, what are you doing here? Running head: CANCER SOCIAL SUPPORT NARRATIVES 77
Friends and Neighbors. Most of the support she received from friends and neighbors came through task support; cleaning her house, meal preparation, but several of her friends traveled from various distances to be by her side for a week at a time.
So, umm one of my friends came and stayed a week and my husband wanted to stay a
few days before he went back to work so he, I think I came home on a Tuesday, and he
stayed the rest of that week with me and then a friend came from (sic) a northern city and
spent a week with me, and one came from (sic) a state away and spent a week with me,
and another friend that’s local came and spent a week, and that’s like “I’m okay now, I
can stay by myself.” So, I was able to stay on my own, but you know, all of my neighbors
just like an outpour, they were bringing over dinners, several of them were getting
together cooking and bringing [meals over], (sic) Well, one came in, actually while I was
in the hospital and like cleaned all of my bathrooms and vacuumed and dusted. Cleaned
the house up, so when I got home from the hospital, I could come home to a clean house.
Fran clearly appreciated the support and personal sacrifices her friends made in order to be by her side.
It was good, having the support in just them being there. You’re not there by yourself.
One of my friends that was there for my surgery and I didn’t realize she came because
she was supposed to come with another friend that was had-had a brain aneurysm, and
she was in another hospital and she was supposed to be there with them, but she came for
my surgery and I didn’t know she was there until I came through surgery and they
wheeled me from the recovery room back to the ICU and she was there with my husband,
and I just kinda pointed my finger at her, and I said girl what are you doing here? Running head: CANCER SOCIAL SUPPORT NARRATIVES 78
Because Fran does not typically request assistance, she considers herself to be “private,” her husband made several calls on her behalf to let friends, neighbors, and former and current co workers know her health status. Many of these individuals reached out to her as well. At times,
Fran was over-whelmed by the outpour of support. She has become closer to one neighbor as a result.
I didn’t even know them. You know, they were just such sweet people. I really, got to
know her really well (laughs). From being sick, and that was one really good friendship
that came out of all of it. (sic) Umm, just, I think got closer to some of my neighbors that
I, you know, like I knew them, but, you know everybody's busy kind of does their own
thing, but they made it a point to, you know, come and visit, spend time with me, bring
my husband food (laughs). And I did not expect that [at] all, that kind of blew me away...
but you know, you just don't really expect it, I guess. That kind of amazed me that all of
them would do that.
She also acknowledges the support she received from individuals who were unable to be by her side, but made themselves available through other means.
There were friends from the mountains too, we have other friends up there and they
didn’t come down, but they were always calling and texting, so. There was a lot of good
support.
Fran also recognizes the power of pray from individuals who she will likely never meet.
Some of my neighbors belong to churches and they would put me on the prayer list, and,
so, you know, different people from all these different churches were praying for me too,
and you know I felt like all of that was very helpful. Running head: CANCER SOCIAL SUPPORT NARRATIVES 79
Although she had relationships grow as a result of her diagnosis, Fran also feels like she lost a
friend as a consequence. “It's just the support of all the people and friends and stuff too its, you
really find out who your friends are.”
Loss of Friends. Fran experienced something that is not uncommon among cancer
patient support systems. There was an individual, a fellow survivor, which seemed to withdraw
from Fran as a result of her diagnosis. Fran appeared disappointed and confused. Without
asking the individual directly, it is difficult to determine whether or not it was related to cancer,
if the individual was afraid it would trigger her own memories regarding treatment, or if it was
easier for her to withdraw rather than face the potential loss of a friend through death.
And then there's a couple of people that just kind of fade away. It's like, and one of them
was one of my neighbors. You know, we’d been kind of close, doing lunches and stuff -
and then she just kind of fell off, and I don't know if it was just the fact that, you know, I
think some people just don't know how to deal with stuff. What’s strange to me though,
is she had-had breast cancer herself, and I know it is totally different from what I had,
but you know, she called, my husband called and let them know about it and then she
called once [I was] at home. And then, I never heard from her again. And we would like
go out to lunch and do things; that’s what I mean you kinda like find out who your
friends are. But again, it could just be her way of dealing with it or something, but what's
really strange is we really, never, kind of never rekindled it.
Not reaching out. Despite the pleasure and benefit that Fran has received from her support system, she does not personally reach out for care and support. Most of her caregivers came to her side without being asked by Fran directly. It does not seem to be in her nature to ask for help and she views this as a character defect. Running head: CANCER SOCIAL SUPPORT NARRATIVES 80
I didn’t call people. It is like, if you want to get in touch with me, and I am bad about
that. I really am. That’s one of my faults, I think, that I have in myself is; and I was
talking to my husband about-about that, its like all the friends that I have, its like I’m not
really good about calling them and trying to get together with them and I need to be
better about that.
When asked how people found out about her diagnosis, surgery, and hospitalization, she stated
the following:
Oh, my husband had let them know, (interviewer: okay) Oh, he called everybody. He sent
text to people. He got my phone and he just went to town. I mean people that, some, you
know, probably I didn’t even want him to get in touch with, (sic) like flight attendant
friends and then of course flight attendants know each other, you know then everybody
(laughs) is finding out that.
Both Fran and her closest friends view her as “private.” After a telephone conversation where
she felt like she revealed too much personal information regarding her treatment process, she
told her husband “you shouldn’t have let me be on the phone, do not let [me] talk on the phone
(laughs).” Her friend said, “you’re more private than that.” Despite her reserved demeanor, Fran
has been able to cultivate new relationships with other survivors.
Group Support and Cancer Wellness. Even with a busy travel schedule, Fran is a regular
participant in the exercise classes at the cancer center. Similar to Ann, Fran has made connections and found camaraderie in this group. She stated “[I] like being able to come here and go to exercise classes.” Fran went on further to say “it’s just nice to have met them all. I enjoy coming every week to see everybody, you know, its fun.” She has also participated in the
Head and Neck support group on several occasions. Running head: CANCER SOCIAL SUPPORT NARRATIVES 81
Just being able to talk to people who were going through similar situations or had been
through stuff before. And like even the head neck classes that they have, I came to
several of those and that was helpful. Um, just, you know, the support from everyone
who has had that experience, it was nice to talk about different things, what to expect like
from radiation.
Through her participation with the Head and Neck group, she learned vital information that she had not heard from her physicians. “After talking to some of them at the head and neck clinic, actually the instructor, he suggested I go to his ear, nose, and throat [doctor], so I did and found out I no longer produce earwax.” This realization became a pivotal part of her treatment and narrative. Fran later expands more on her thoughts and feelings regarding a lack of information from her doctors, yet a portion of her story includes her satisfaction with her physicians and her care.
Confidence in physicians. Fran’s trusted physician had a career ending accident, which prevented him from performing her surgery. This physician referred her to another specialist, because she trusted the first doctor’s opinion, she went into her consult with the subsequent doctor with a positive attitude. It was important for her to have confidence in her brain surgeon’s ability. “I think you have to really believe and trust in your doctor as well.” Her new physician does not have the best reputation when it comes to his personality and social skills, but he is a talented surgeon and Fran learned how to connect with him.
Sometimes he doesn’t have the best bedside manner, but if you need like-like a surgeon,
umm, a really good excellent surgeon, that’s who I’d go to. And, so, that’s who the
emergency room referred me to. And I had heard from, like I said, from different people
in the offices, from another doctor, so when he came in the room, we just hit it off. I just Running head: CANCER SOCIAL SUPPORT NARRATIVES 82
told him I’d heard real good things about him. I just kinda started bragging on him. What
I had heard from different people and he just kind of sits over there and grins and, um, we
just hit it off. He was wonderful.
Theme 2 Coping and Optimism
Fran coped with her diagnosis, surgery, and post treatment effects by having her husband and long-term friends by her side. She also spent most of her downtime watching upbeat television programming. When asked what helped her most she stated, “reading, I guess. I read a lot. TV, we go to movies, shop, [I] still like shopping.” She also mentioned viewing the
Hallmark channel for hours at a time around the holidays. “It was uplifting, you know, most of their movies are. It was, you know, pretty good.”
Her own nonchalant, non-emotional, cavalier perspective on her brain tumor surprises
Fran. She states, “I didn’t get angry, I didn’t get mad, it’s just kinda like, I just went through it and I thought, well is that normal?” She believes she should respond differently and questions whether or not she is in shock or denial. We discussed her history of dealing with traumatic events, beginning with her feelings regarding the loss of her mother.
I mean like when my mom died, that was devastating, because I was so young and she
was able to [attend] my wedding, but she was sick at the time. She had lung cancer and
that was probably the most, first traumatic experience I had gone through and I was just
really upset, because she wouldn't get to see, you know at the time, if I had kids, you
know, and just, you know, me married and happy and just have her, you know, around
during my adult life, so. And I was sad.
We moved on to discuss how she felt about losing her father to Alzheimer’s disease. When he was diagnosed, Fran was initially in denial. “Oh no, that’s not what it is, it’s something else,” she Running head: CANCER SOCIAL SUPPORT NARRATIVES 83 stated when he was given a preliminary diagnosis. “So then there’s that little bit of hope and then you keep on going and it turns out that was what it was.” Ultimately, she seemed to accept the loss. “So then after he died, then it was kinda like a relief and blessing, because I know he didn’t want to be here that way.”
Her apparent resilience and ease with dealing with her tumor may be best described as acceptance. “I can’t do anything to change it, just go through and you know, just deal with it.”
She was clear about wanting direct information from her physician and said the following to him,
“I want you to be totally honest and up-front, my husband was standing there. I said I want you to be totally honest and up-front. I don’t want you hiding anything, telling him something I don’t know. I want to know whatever.” Then she stated, “I didn’t get upset or cry or anything, I said okay, that’s the way it is.” Her philosophy can be captured in the following statement: “I felt like everything is going [to] be okay, so I didn’t really get upset or anything.”
Theme 3 Work
Employer. Fran works as a flight attendant for a large American air carrier. When she was diagnosed, Fran negotiated her vacation time to fit around her treatment schedule and maximize her time-off without losing any of her accrued leave. She went back to work in the middle of her treatment, despite the fact that she was in recovery from her surgery and dealing with the various side effects from radiation. Although she was extremely ill at times, she managed to work through her symptoms.
I worked like a full schedule, but tried to drop down and didn’t want to fly as much; so
when I went back I was real slow; and I was actually still sick when I went back. I mean,
like I remember (sic) a few days just you know getting ready to work and just the
movement, something about getting up in the morning I was just so nauseated. Running head: CANCER SOCIAL SUPPORT NARRATIVES 84
Co-workers. Fran has been employed in the airline industry for nearly three decades. She
made a clear distinction between her friends and individuals who she has worked with over the
years. She seemed appreciative of the efforts and support that her fellow co-workers made to
send their well wishes, but it was clear that her husband informed them of her status. Fran would
not have informed her current and former co-workers of her health status. She seemed pleasantly
surprised by the outpouring.
And it was people that I would be friends with, but still I didn’t really have that much of
relationship, like it wasn’t like we went out to lunch and did things. We would just kinda’
talk and enjoyed our trips together; layovers, but we really didn't do anything outside of
work. So for them to take the time to come, you know and see me, and send cards that
just you know, touches you. (sic) Stuff like, one, I hadn’t probably seen her in like gosh,
its probably been 18 years (wow) and she sent me a cup through the mail, one of those
insulated, (laughs), nice cups, and I’m like “oh, you know.” So, its just funny how people
come through when you’re sick, you know.
Theme 5 Treatment Challenges
For Fran, the side effects from radiation were far worse than brain surgery. “The radiation and being so sick at [her] stomach,” were difficult to manage. As mentioned earlier, she spent several weeks working under these conditions. “Just the movement around, would make [her] sick. [She would] be throwing up and trying to get ready and go to work. But, finally eating crackers, bananas, and drinking apple juice and [she] finally got better, but it took a long time.”
She added “I was real depressed just because to me, being sick, nauseated, throwing up, that’s the worst kind of sick anyway.” It is difficult to imagine her working when “[she] had thrown up so much, [she] was throwing up blood. Because (sic), everything was so raw.” Running head: CANCER SOCIAL SUPPORT NARRATIVES 85
The surgery itself was not that bad. The recovery, I didn’t think, but the radiation is what
I have the rough time with. That was when I ended up so sick at my stomach and I ended
back up in the hospital a few days and had to have fluids. I was actually in, I think for
three and a half days.
Nausea and vomiting were not the only side effects from radiation treatment. She
struggled to cope with the various side effects, but she somehow garnered the strength to move
forward in her life and career. She spoke very candidly regarding her experience.
Well, when I was going through radiation I was honestly more like a little zombie or
something because I was so sick and not able to eat and drink. I would just try to force,
like, crackers down. I just couldn’t do it myself, and I knew if I didn’t eat, I was going to
end up in the hospital. I had a really hard time with that part of it, but it was more like I
was sort of like a zombie sitting in front of the TV.
As much as possible, she ceased opportunities to rest and recover between flights and her days
off. All the while knowing that she will have to have “MRIs for the rest of [her] life” to verify
that her tumor has not returned.
But I’d just been so sick and not feeling like doing anything. All I did was sit around the
house. And them even afterwards, I went through a long, almost a year of sleeping a lot.
If I wasn’t at work I’d still be sleeping.
Passion Topic: Lack of Information
If there was anything disenchanting about her medical process, it would be what she considered to be a lack of information as it relates to potential side effects of brain surgery and radiation treatment. “You know you just leam things and I talked to the radiation oncologist and they don't really go into, I guess all the possibilities of what you can go through.” Following her Running head: CANCER SOCIAL SUPPORT NARRATIVES 86 surgery “the doctor didn't mention (sic) the coordination and balance issue, and luckily [she] didn’t have a problem with any of that.” As much as she likes her physician and has confidence in his abilities, she also mentioned “the only thing I found about him is he doesn’t like- like volunteer a lot of information. You have to kind of pull it out of him.” Running head: CANCER SOCIAL SUPPORT NARRATIVES 87
CHAPTER 7
PARTICIPANT 4
Introduction
Participant four is a forty-four year old white female who was diagnosed with leukemia in 2010. For the purpose of this study she will be referred to as Daisy. Daisy is currently unemployed, but stated that she worked “in the media field” for 22 years. Since her diagnosis, she has worked in a convenience store and was later told by her physician that she should not work at all. Daisy completed chemotherapy, but has not had surgery or radiation. She will take a daily chemotherapy pill for the duration of her life. Daisy has an adult son, a granddaughter, and a live-in partner.
Individual Themes
Theme 1 Support
Family. Daisy seems satisfied with the support she received from her family members. “I have a very-very strong family. Very strong family, that is right behind me.” She feels that she can depend on her family to provide consistent and predictable support. “Every time I fall, they’re there with hands out, ready to pick me up.” Daisy seems to appreciate it most when her family members listen to her concerns without feeling a need to give her answers, give her feedback, or attempt solve the problem. “They just listen to me, and they come check on me.”
She further elaborated on how her family members are helpful.
They listen when I do need to vent. They listen. They know that they’re not supposed to
tell me they’re sorry or actually, they usually don’t say anything they just let me spill it
all out, which is nice, because not many people can do that, especially family members. Running head: CANCER SOCIAL SUPPORT NARRATIVES 88
Significant Other. Daisy lives with her female partner Betty. According to Daisy, Betty has been extremely helpful throughout her treatment process. Betty has been even more accommodating than Daisy’s mother or son. During the beginning stages of her treatment, Daisy struggled with her change in sexual identity, but she has since come to terms with both her diagnosis as well as her primary relationship.
Friends. With her extroverted personality, Daisy labels herself a “social butterfly.” Prior to her diagnosis, Daisy maintained a very active social life. “When I was diagnosed, of course I was still living (sic) here at that time. People were constantly at the house; when I was first diagnosed.” Following her diagnosis, there were fewer people that she wanted around. She maintained a close relationship with two specific friends. When asked how the two remaining friends were supportive, she responded as follows:
We all go eat. We all have our own little lives. We all have our own little problems and
we’ve just, somehow we’ve just gotten through it. We’ve gotten through all the barriers
that life throws at us. Which has been great and you know they’ll call me and sometimes
we go two or three months without speaking, but its not because we’re not friends, its just
life takes over. But we always seem to pick up right where we left off.
She went on to describe the benefits of their friendship further. Daisy’s explanations highlight the importance for cancer patients to feel normal around friends and family.
They do distract me from cancer. They make, they treat me like I’m normal. They don’t
treat me any different than what they did before. Which, I guess, I need that. So, it really
nice for somebody to actually give me a hug when I’m needing a hug.
Loss of Friends. Prior to her diagnosis, Daisy surrounded herself with a large group of friends. Following her diagnosis, she pared her circle down to close friends and family members. Running head: CANCER SOCIAL SUPPORT NARRATIVES 89
There were some individuals who terminated the relationship on their own and there were others that Daisy chose not to have around. “I know there’s a couple that I cut off, because I couldn’t stand to hear them.” Daisy decided that she wanted to surround herself with positive people who would uplift her during this time of personal crisis.
True friends? I went from a circle of friends from probably, there was probably a circle of
twenty-five that I actually hung out with, now there’s two. (Okay). Because once you get
cancer, I don’t know if its people are afraid they’re gonna get it, or they’re afraid they
don’t want to see me sick. I’m not sure what it is, but, everybody’s gone now.
Cancer Wellness. Another source of support for Daisy is participating in the Cancer
Wellness programs. She attends several classes sporadically, but is most consistent in the mindfulness classes. Daisy became very close to two individuals who passed away in 2014.
This may have affected her participation in a negative way; however, she still views Cancer
Wellness as a positive aspect in her life.
The biggest thing that helps me get through is coming to Cancer Wellness, and talking to
other people here that have been through it, and nobody’s pressuring me.
She describes her early reluctance in coming to Cancer Wellness. When her doctor initially referred her to the programs, Daisy did not want to attend. She thought people would pity her and assumed that her experience would be negative. Even when she began attending programs, she was very guarded. “But finally, through lots of talking here, with yourself and other people here, as well as patients, um, my wall’s come down.” After several sessions where she felt accepted and welcomed, she began to feel more positive about the experience. When speaking of Cancer Wellness, she stated, “it’s my happy place. Y’all couldn’t have gotten a Running head: CANCER SOCIAL SUPPORT NARRATIVES 90
better group [of instructors and staff].” She recalls a time when she felt guilty for participating
in the programs and the impact that other participants had on her beliefs.
That’s one big reason why I come to Cancer Wellness, because it makes me feel normal.
I didn’t feel that my cancer was bad enough to be at Cancer Wellness, because I don’t
have a port. I don’t have to go sit in the chemo room and I don’t have to have radiation. I
take [a] chemo pill everyday. So, I felt that I’m taking up someone else’s, someone’s
space that could really use it. So, I talked to Mo and I talk to the people [in]
mindfulness, and they were like any cancer is bad.
Daisy’s feelings of survivor’s guilt are not uncommon for cancer patients. Sometimes individuals feel like they have not suffered enough to deserve a specific level of treatment, compassion, and attention. It is often important for patients to feel validated by other survivors.
Daisy learned this through the individuals in her mindfulness classes. “It’s not that mine isn’t good enough to be here, but I learned that in that room.” She clearly felt comfortable with the group in order to share her insecurities regarding her participation. “Because I just felt guilty for being here, very-very guilty and they finally hammered it into my head that look, its okay.” Her participation in Cancer Wellness has helped her building healthy coping skills.
Because I can feel the difference physically and emotionally. I feel the difference
between the positive energies here and I call it real life. Because I kind of, Cancer
Wellness is pretty much my life. If I’m not here than I’m at home crying, or I’m sick, or
something bad.
Theme 2 Coping
Daisy coped with her diagnosis in several ways. Some were more positive than others.
One of the positive aspects is the fact that she recognizes her own growth and evolution through Running head: CANCER SOCIAL SUPPORT NARRATIVES 91
the process. In reflecting back over the entire experience, she stated, “I wish I would have had a journal back then, like I have now, because I would love to have read what I wrote back then.
Because I’ve literally done a 180.”
Guarded and Defenses. One of her coping methods in the beginning was through
participating in Cancer Wellness, but not fully. She was very cautious. “Because when I started, I
had a huge brick wall up and I wouldn’t let anybody through it.” Her continued participation
allowed her to test new relationships and determine that she was safe to allow her defenses to
slip away over time. “I’ve cried many times in cancer [wellness], in Mindfulness, because it’s a
safe place.” Her ability to trust and open up to the group has had a significant impact on the way
she interacts and connects with others in her life.
Fear. The word “fear” or the phrase “fear factor” was offered at least five times
throughout her narrative. She used it in reference to losing friends. “It’s a fear factor of seeing
me sick or they’re afraid they’re going to get it one.” She utilized the phrase in reference to
others not taking care of themselves or seeing a doctor.
“It’s a fear factor for me personally, you know when someone over here is suffering with
a migraine. It could be a tumor, take your butt to the doctor. You know, don’t just go get
Excedrin Migraine, go to the doctor. Do something about it. Don’t sit and complain about
it.”
She referenced a fear of taking pain medication due to a family history of addiction. “It’s a fear factor for me, because addiction runs in my family.” She goes on to say “that fear is there.
It’s genetic, so, or heredity and I’m very-very afraid.” Finally, she discussed her fears regarding the prognosis of her cancer. “The doctor (sic) was not sure which type of leukemia I had. So, it could have been the...I call them good and bad. It could [have] been the bad one. Where [I had] Running head: CANCER SOCIAL SUPPORT NARRATIVES 92
maybe six months to live. So, it was a fear.” She also discussed what she considers to be an
inevitable struggle with depression once an individual receives a cancer diagnosis.
Depression. Because she is an extrovert, it is important that Daisy receives positive
emotional support from other people. If left in isolation for long periods of time, Daisy wilts
emotionally. She receives energy from being around others.
I’m a social butterfly. I like to talk, as you know. I like to be around people. People make
me happy. If I’m by myself, I get very depressed. I get very...I have a pity party. But, if
I’m around other people, I just feel happier. It just lifts my spirits.
She believes that depression is an inevitable part of a cancer diagnosis. “Because face facts,
anyone that has cancer, they’re depressed anyway. There’s some point where you are depressed
so it’s very easy to get pulled out of the positive and pulled back into the depression.” One of her
major strategies for avoiding depression is avoiding emotionally draining people.
Negative people. Daisy deliberately avoids former friends as well as her brother, both can
be emotionally straining for her. “I’ve tried to get away from the negativity.” Her strategy has
been to surround herself with people who affirm her life and existence. “[She] had to get rid of
some of the negative to heal [her] self.” This strategy seems to be working for her. “The positive
people have just turned [her] life totally around.”
Acting Out. Another coping strategy Daisy has utilized is recognizing the freedom or
liberation that comes with facing one’s mortality. When Daisy realized that her death could be
imminent, she began getting additional tattoos, piercings, and embraced her same-sex relationship.
I go get tatted up. I had no tattoos, well I had one tattoo before I was diagnosed. So, that
was like, my way of dealing with it at first. Like, because I felt it was a death sentence. Running head: CANCER SOCIAL SUPPORT NARRATIVES 93
So, I now have 15 tattoos and I had one to start with. I had no piercings other than my
ears. I went and got my eye pierced, my nose pierced, my lip pierced, and my tongue
pierced.
She admits that her actions were a direct result of her death fears. “That was just my way of
dealing with it at first, because I.. .1 personally felt that it was a death sentence.” She also speaks
of her actions in a way that is very freeing and liberating. “I can do whatever I want. I’m not
going to be here long, I’m going to do everything I want to do. “Interviewer: Dye my hair
purple? Participant: Dye my hair purple, dye my hair pink, do whatever I want to do.” She also
seemed to embrace her relationship with Betty as a result of her diagnosis, but there was still a
period of adjusting to her new sexual identity.
New Identity. Daisy began dating Betty after she was diagnosed. In the first few months of facing her disease, she viewed her life and her relationship as temporary. According to Daisy,
“the hardest thing through all that was facing the fact that... I kind of liked a girl. That was really, really, really difficult for me, very difficult.”
Interviewer: So do you think that in kind of dating Betty, do think it was like the tattoos
and piercings “Pm just going to do what I want...” (I think so) Even though this is a girl,
it doesn’t matter because it’s all temporary anyway. Right. And the point where you said
“No, this life isn’t temporary.” Did you decide “this relationship isn’t temporary?”
Daisy’s response was as follows:
Betty is long-term. Betty’s not going anywhere. Because I mean I have it...she has
helped me tremendously, because she has been the biggest part of all this, other than my
Cancer Wellness. She’s been a bigger part than my mom, and my son, and everybody
else. Running head: CANCER SOCIAL SUPPORT NARRATIVES 94
Betty is clearly an essential part of her life. “She’s already arranged for me to get the house, and
make sure I’m, I’m getting her retirement, I mean she... everything that this woman does is for me.” Betty is certainly a part of Daisy’s long-term plans.
Optimism. Despite having a few moments of depression and doubts, it seems as she has moved into survivor ship, Daisy has learned to accept her diagnosis and the status of her life.
According to Daisy, “you can’t fix this. You just have to deal with it.” In comparison to her mood and attitude when she received her diagnosis, Daisy has taken on a perspective that has helped her through the process. “I try to look at the positive things, I’ve learned that here too.”
Theme 3 God, Church, Religion
Daisy is not affiliated with a particular church. As a child she had negative experiences with organized religion, however, it is clear that she has faith in God. “I love God. He’s the only reason I’m still here and I know this.” She has incorporated her mindfulness classes with her spiritual beliefs. “I have finally learned the difference in praying and meditation. Praying is me talking to God. Meditating is God talking to me.” There is also clear existential meaning making, as she is trying to reconcile the etiology of cancer with a greater purpose for the diagnosis in one’s life. “Sometimes I talk to God and I’m like “what did I do to deserve her?” you know, maybe that’s why he gave me cancer, so that I can have her. I don’t know...”
Theme 4 Life Long Treatment
Due to her leukemia diagnosis, Daisy will likely receive some form of chemotherapy for the remainder of her life. She began discussing some of the challenges she has been facing with ongoing joint pain. “Because one thing about cancer is, you hurt in different ways and my type of cancer is not curable.” She further describes her attempts to see a rheumatologist regarding her pain. “I also have arthritis in my legs and I’ve been to three rheumatologists and they refuse to Running head: CANCER SOCIAL SUPPORT NARRATIVES 95 touch me, because of the chemo medicine that I’m on. They won’t touch me ‘til the cancer is gone. It’s never going to be gone. So, then I have to deal with this pain.” Daisy has a family history of addiction and does not want to take painkillers to alleviate her joint pain.
Passion Topic “I’m so sorry”
Throughout her narrative, Daisy was adamant about a particular response often given to ill patients. She is nearly infuriated when someone says to her “I’m sorry” in reference to her diagnosis. According to Daisy “when you are a cancer patient, there’s certain words you don’t want to hear anymore.” Many patients have particular trigger words and phrases that they would prefer not to hear. Daisy does not want “to hear somebody tell me “Pm sorry,” for her this phrase is linked to imminent demise. “We say the same thing when we go to a funeral. I’m so sorry. I’m so sorry. Sometimes you just need to hear everything’s going to be alright. Everything’s fine.”
Daisy is looking for words that she feels speak life into her experience. Whereas “I’m sorry” feels more final.
I’m sorry you’re going to die,” is what goes through my brain. And it’s not a death
sentence, because there’s only one person that knows if I’m going to die tomorrow. And
it’s not that person saying they’re so sorry.
Survival Philosophy
“Cancer has been...it is a blessing in disguise. Before, I rushed through life. I paid bills, I
did this, I did that. I didn’t stop to say, “Good morning Tavari, you look beautiful today.”
Or “Good Morning Sharon, hey beautiful, how are you?” I never did that. I’d just be like
{mouth noise) “oh, they’re here, yay.” Now I-I value every relationship, every
conversation with anybody. Because, face facts, we’re not promised tomorrow. So, I live
for every moment. Every moment. Make the most of it.” Running head: CANCER SOCIAL SUPPORT NARRATIVES 96
CHAPTER 8 PARITICPANT 5
Introduction
Alba is a 56-year-old ovarian cancer survivor. She has two adopted daughters. Her eldest
daughter was diagnosed with ovarian cancer in 2010, Alba was diagnosed in 2012, and her
daughter had a recurrence in 2014. We will refer to her eldest daughter as Ally in this text.
Alba’s youngest daughter has been diagnosed with mental retardation, autism, a spectrum
disorder, and most challenging for Alba, reactive attachment disorder (RAD). For the purpose of
this study, we will refer to her younger daughter as Bella. Alba has been married for 30 years.
She and her husband own a small business. The family identifies as Guatemalan-American and
Catholic.
Individual Themes
Theme 1 Support
As it relates to the theme of support, Alba states “I think that-that’s the main thing
that has carried me through. Obviously family, friends, and all that support [you].” Additionally
she stated “I do know how you get through something like cancer without having a strong
foundation of faith, and family, and friends that support.” Alba gave a specific example of the
lasting impact that her extended community has had on her recovery.
A friend, through my cousin, who sent me a card, which is so beautiful. I don’t have it
with me, but I love and I’ve used it. I’ve used it so many times and reread it through the
treatment. I took it out many times afterwards
Extended Family. Alba has a large extended family that has played an integral role in supporting her immediate family unit. Throughout the adoption processes, a near fatal injury her husband experienced, the cancer diagnoses and coping with Bella’s disabilities, it is clear they Running head: CANCER SOCIAL SUPPORT NARRATIVES 97 rely heavily on extended family members.
1 have a niece; I don’t know how she was able to stay her [at our] house, (sic) I have my
niece who was staying at home and when my husband was not at home, and oh yeah, and
then the other niece was staying home too. So we got the girls covered that way. When I
came home, my cousin, my husband’s cousin, my cousin; she would come to my house
clean the house, make our dinner, so my husband could just focus on me and the girls.
Their family was physically present as well as providing spiritual and emotional support from a distance. Through their support, she gained a better perspective on how she can assist others.
I have my brothers, one of my brothers was always calling me. “How are you doing?” Or
drop-by, somebody was always calling, sending a note, making a phone call, and all that,
you know, just keeps you going. So, I remember one friend especially, would always send
a card like on regular basis. “Just checking-in. Just thinking about you. We’re praying for
you” and I remembered that and I remember how much it helped me to open that card see
somebody’s praying for you, somebody's thinking of you, so now I remember when I knew
somebody who’s sick and while they’re sick; I do-I’ve done the same thing, because you
need that. You need that encouragement.
Friends. Most of her articulated support outside of family members comes from friends through a group of women who have children with reactive attachment disorder or a friend who lost a child to cancer.
I have these wonderful friends. Um, they are not friends, we call each other sister-friends...
and I think that's one of the gifts that I received because that... (that community). Uh-huh,
we've known each other now for at least seven-eight years. So, yeah, we’re more families
than friends now Running head: CANCER SOCIAL SUPPORT NARRATIVES 98
When she described her friend who lost her son to cancer she stated the following:
Because she's a mother who went through her son's cancer, she understood, because she
started to send me cards “I’m thinking of you, I love you guys, I’m praying for you, you’re
on my mind” you know, because she was seeing it from a parents point of view and I’m
like she understood, because I needed that too, because we’re trying to hold it together and
stay focused for Ally and do what we need to do, but she was thinking of me. So I
remember that.
Spouse. Alba is the primary caretaker for both daughters as well as running a business with her husband. When Alba was in treatment for her cancer, her husband took over all responsibility for the household and business with support from family members. According to Alba “[her] husband is wonderful. [She doesn’t] know how he held it together. He must've cried in his own time, because he was always strong for [her] (begins crying).” His assuming additional responsibility in the house allowed Alba the opportunity to reflect and heal without the stress of domestic concerns.
I don’t know how he did it, because in front of me, he was always strong. He took
over...he took over everything. You know, he has a cousin here who lives close by. She
was such a great help. It's good to have a large family. Even with our family, you know,
visiting and friends always, you know, encouraging me, but she was wonderful. I’ll always
be grateful to her. I can't prepay any of that back.
When asked how her diagnosis affected her marriage, she stated “actually it’d brought us closer.” It seems that dealing with Bella’s challenges had a negative impact on their marriage, but the cancer diagnoses and having a treatment plan for Bella has strengthened their relationship. Her statement to her husband was “I loved you before, but I love you so much Running head: CANCER SOCIAL SUPPORT NARRATIVES 99
more now, because of it.
You know, [in the] beginning... (sic) the mental illness, which almost tore apart. We were
pretty much on the verge of divorce before we-we brought, before we figured out what it
was, the attachment disorder. And you know, we had ups and downs through that whole
time. I think the turning point was, you know, Ally’s first cancer, my cancer, and then
Ally’s cancer again. It’s definitely brought us closer. I guess it could definitely do the
opposite, but it hasn’t for us. I know it brought us closer. It’s brought us closer as a family
to God, definitely. You know, I think we’re definitely better after it than before it.
Theme 2 Coping
When she was diagnosed, Alba simply focused on moving through the process. For her,
Ally’s diagnosis and Bella’s needs came first. Her initial belief was that she was strong and she would beat cancer for her daughters. Her positive attitude did not protect her from the inevitable complications of treatment.
I’m like “okay, I can do this,” you know, oh boy, was I wrong. As, the more you
accumulated in your body it just, was worse and worse. You’re more tired, you can't
eat, I was okay until I think the-the fifth one where I no longer could drink enough
water, because it tasted like metal. I had to force myself and then I was getting
dehydrated. So I was coming back into the hospital, you know, after chemo to get it
what they called a jumpstart, just some fluids and I would go home and I would feel
great, but then it, I would get dehydrated again. I couldn’t get enough water in my
body. The neuropathy was painful. The, either your constipated or I lean toward the
side of constipation, that was awful. No amount of water helped that, but you know,
those things pass. Running head: CANCER SOCIAL SUPPORT NARRATIVES 100
Even with her challenges, she was determined to move forward. She stated “I kinda just put
everything on the side, so I don’t think about it. So you can just do what you have to do during
that time.” She continued to maintain her focus on her daughters as a way of coping.
[The goal was to] be here for my girls and I remind myself when you get those days,
when you’re stressed at work, or running around, the kids want, you know, they need
you to take them here, they want you to take them there. Then I'm like, when I have
that moment when I’m like “oh, there’s all this to do.” Then I’m like,” no, I’m here
to do it. Thank God I’m here to do it for them.” So life takes on a different
perspective. Those things that you thought were harder, or difficult, or stressful, you
have to think “but I'm here.” I can still do those things for the girls and for my
husband and I can work. And I can., it does change things.
Alba also shared some of the benefits and insights she gained as a result of her cancer journey. Due to her previous experiences with Ally and Bella, she seemed prepared to deal with her own ailment. Their needs also gave her a perspective that receiving a cancer diagnosis may not be the worst thing in life.
When I had balance it all out...it wasn’t... there were so many difficult moments,
(begins crying) then that moment. So, I sometimes I know that I never took it lightly,
but looking at the past it wasn’t the worst thing that had happened to me. I think that
dealing with this the special needs, mental illness, um, dealing with Ally’s, cancer I
had already, like you said, climbed bigger mountains than my own cancer. That
helped.
Due to the support she received from her husband, cousin, and niece, Alba was able
to take time to pray and reflect while recovering from treatment. She gained several Running head: CANCER SOCIAL SUPPORT NARRATIVES 101
insights during her quiet moments of reflection.
When I was going through it. I had this like, such a strong sense of peace and clarity,
and all that. My body with mess an absolute mess. But because everything else had
stopped around me, like my normal path of my life of work, of children, of going to
work, picking-up kids, making dinner; all that literally stopped. So, there was this
time, (sic) so much quiet time, which led to a lot of clarity and it- it was I-I keep, I
don't forget what it was like because it was so peaceful and I-I loved that feeling.
Alba clearly needed and appreciated this downtime, despite the circumstances that brought this
opportunity into her life. “Your everyday life that you have to do. It was a very, for me, it was a
very beautiful.. .it’s hard to, you know, you have cancer, but at the time, it was a very beautiful
time for me.” She continues to describe the lesson she learned through her reflective time.
That sense of peace and that sense of calm, I don't forget it and I know that if I take
time for me, which I’m doing more often now, and I have to have my time of prayer
or else I feel like I’m further away from that place of calm and peaceful, because all
these things keep going on around you; your life, problems, stress, whatever. But if I
have that little time for myself, it’s okay and those things are going to get worked
out. They’ll pass and you’ll figure them out. They’ll go on.
Ultimately she has grown to accept her diagnosis much like she has Ally’s diagnosis and Bella’s
special needs. “That’s what mental disabilities have done. I guess, good things have come out of
our... the cancers, you know, raising Bella, and I'm grateful.”
Theme 3 Efficacy
Daughter with cancer. As an eighth grader, Alba’s daughter Ally was diagnosed with ovarian cancer. Because Alba had been so consumed with Bella’s needs, she admits to neglecting Running head: CANCER SOCIAL SUPPORT NARRATIVES 102
the needs of Ally. She noticed Ally had been gaining weight, but had not kept up with her
daughters’ regular physicals.
I pretty much, when you have a child with mental disabilities and I've seen it with my
friends; the child that doesn't have the disabilities pretty much gets set off to the sideline,
because the one that does have the disabilities; just consumes every moment of every
day. So, she kinda got set off to the sidelines and it had been a while since I had taken
them for the regular check-up.
By the time Alba took Ally to the doctor, Ally’s abdomen had swollen to the size of a hard
cantaloupe. The pediatric nurse initially accused Ally of being pregnant. Alba was adamant that
her daughter was not pregnant and insisted on further testing. She was determined to find the true
cause of her daughter’s bloated stomach. Her ability to advocate for her daughter appeared easy
for Alba, but dealing with the true diagnosis presented obvious challenges.
When we got the news that Ally had cancer, because it was, it, it was so hard hearing
when it’s your kid. When it’s you own child. I was even that hard when I heard it was
about me, but when it was Ally and you don't know, you know, are they going to be able
to cure it? Or not. That was difficult.
Even as she reflects on her own diagnosis, it continues to be clear that coping with Ally’s cancer
was much harder.
The fact that my daughter went through it before me, it was like “I have cancer.” It’s not
that I didn’t care. It wasn't my daughter, so it was going to be okay. It was more
overwhelming when my daughter was diagnosed with it than myself. I was still
overwhelmed and it was very scary time, but when I had to look back, it wasn’t her.
Recurrence of Ally’s cancer. Running head: CANCER SOCIAL SUPPORT NARRATIVES 103
Ally successfully completed her treatments and became a high school graduate. During
the summer of 2014, Ally was looking forward to enrolling in a local college during the coming
fall. Typically, once an individual reaches a point where their cancer is undetectable for five
years, the individual is considered cancer free. Four years after her initial diagnosis, Ally’s
physician saw another tumor near her remaining ovary. Alba reflects on the family’s experience
with Ally’s recurrence.
We had already gone into the area where they send you for survivor-survivor area. [Did]
all the paperwork, had gone there, and she was doing her last checkup with the oncologist
and this-this June right after she graduated from high school and the scan showed
something and they reschedule the MRI and the MRI showed a tumor, which was
originally thought to be on the remaining ovary. A couple weeks afterwards the surgery
showed that it...when the surgeon lifted the ovary it wasn't attached the ovary.
Interviewer: It was not? Alba: Was not, it was attached to the colon. So they closed her
up, she consulted with the oncologist, and then it was decided that she would have to do
chemo to see it would just be taken care [of] that way and it was. Thank God. It has been,
her MRI after her chemo treatment showed everything clean.
Advocating for her children.
Daughter 1. Alba began advocating for herself and her daughters before they were adopted. New to international adoption, it took three years for Alba and her husband to formally adapt Ally. In the interim, Ally lived with Alba’s sister-in-law in Guatemala. Because her sister- in-law worked during the day, a sister of the sister-in-law was selected to care for Ally during the day. After a year, the caregiver grew attached to Ally and let Alba know that she would like to raise Ally as her own. Alba describes her response to the woman. Running head: CANCER SOCIAL SUPPORT NARRATIVES 104
I think I said “look you can keep her stroller, you can keep her bed, but you can't keep
her.” I said “if it I have to come here and live here, I will live here, but you can't have
her” and I don't know something just changed at that moment,
Alba made the decision to remove Ally from her sister-in-law’s household and ultimately the
care of the babysitter. She found another family member to care for Ally until the adoption was
finalized.
I didn’t think about what my sister-in-law would think. I just knew that-that was the right
thing to do, and we went, and I left Ally with his family, and I came back home that night
and I talked to my sister-in-law and I said “I’m sorry but I-I made a decision that I
thought was best for my (sic) daughter.
Daughter 2. Alba’s advocacy work with Bella began in Guatemala as well. They adopted
a child without being informed of her medical needs and suspected mental retardation. Alba and
her husband were not informed of Bella’s special needs diagnosis until after they returned to the
United States. Alba’s husband was angry that the adoption agency withheld this information and
he was leery about taking on the care of a special needs child. Although she struggled with the news, Alba had the following perspective:
I personally couldn’t say, you know, I don’t want this child she’s broken or not right and
let’s try again and have another one. So I told my husband, you know, if you, I, no
pressure you-you need to decide for yourself if we move forward or not. I-if we- if you
don’t want to do it, I won’t do it, but I cannot go back and start all over again to try to get
one that’s well or normal. Normal, whatever normal is, I just-1 just couldn’t... I think it
was my faith again, how do I say “God, I don’t want what you are giving me, because it’s Running head: CANCER SOCIAL SUPPORT NARRATIVES 105
broken, and it’s not right, and it’s not normal,” and “give me one that’s okay?” I- I
couldn’t. I just- I just couldn’t go there.
Her work with Bella as she grew included the typical medical needs as well as updating her academic Individualized Education Program (IEP), which outlines Bella’s educational services and needs. At one point the school informed Alba that they would be reducing the number of services provided to Bella. In response to this portion of the narrative, Alba said “I didn't know what to do, but I did understand that less services were not going to help her. So I didn’t know what to do, thank God, I was talking to a friend, our little mother’s group.” As a result of feedback she received from one of the ladies in her support group, Alba hired an advocate to assist with determining Bella’s educational rights.
They offered services that I had no idea where available for my daughter, because they
never made me aware of them. They were there. They didn't just appear that day and (sic)
the tone was different, I got more than I ever expected, I got more than what they were
trying to give get take back from her, and I was I was disappointed and angry too when I
left, but that was just for a moment, because I’m like, I had to bring you here for them to
treat me different. Prior to her coming, you know, they treat you as somebody who
doesn't know what your rights are, because you don't. And they take advantage of that.
So, it was disappointing.
Theme 4 God, Church, Religion
One of the primary resources that have helped Alba deal with the challenges in her life is religion and faith in God. She was raised Catholic and her beliefs are an integral part of her life.
I think it's my faith. I think if it weren’t for that, I would have had such a difficult time. It
wasn't always the main focus, but it was always there. And I do pray and I always Running head: CANCER SOCIAL SUPPORT NARRATIVES 106
continue to pray, even on those times I didn't go to church regularly. And that’s always
been there. It’s just a part of me like-like the way I breathe, the way I live. It’s always
there. Sometimes it is more present and in the forefront than others, and there were,
[have] been years where it just has not been in the forefront, but it's always been present.
Her faith along with support from her family has been particularly helpful in coping with Bella’s needs.
Prayer, lots and lots and lots of prayer. There were so many times I’d hit a roadblock with
her and I kept praying even though I didn't know which direction to take; I would keep
praying and sure enough, you know, somebody would give me a new path, I would hear
something, I would go a different direction, a friend, a teacher, a doctor, and I would
always be directed in different directions, because special needs, mental illness, it just
practically tore our family apart.
Alba’s faith gave her the strength to reach out to friends and extended family members to ask for prayer and support. Her belief in the power of prayer is a coping method. It was a reminder that she had support physically, emotionally and spiritually.
I can ask for prayer and I can pray. So I emailed everybody I knew. All my family, thank
God we have a large family. And I just asked for prayer constantly through the whole time
and I-I have no idea how many people were praying for Ally. I know that she was on many
churches, not just Catholic, all faiths, on the prayer list. We had friends, family on the East
Coast, all our family on the West Coast, and friends who have friends that I don't even
know, but they’re like [I] have a friends praying for her. Our good friend, he had his sister
in Brazil praying for her. He’s like, my sister wants you to know that we’re praying,
they’re praying for her. That’s all I could do as her mother, I’m like, you know, God’s Running head: CANCER SOCIAL SUPPORT NARRATIVES 107
heard and He's been there absolutely for us. And I’m like in the midst of all the midst of
the chemo, the testing, surgeries I’ve... there's always been this strong sense of peace. The
peace that has just carried us and kept us in a good place when we were trying to help her
through this. So, it’s faith.
She continued to explain her way of facing her challenges as “it’s God, you know, surrounding me with peace for that time. I don’t know how else to put [it] into words.” Her faith is something that she knows and feels; yet she has a difficult time believing she can articulate.
Alba recognizes there were many years when she was going through the rote motions of her faith
“but not really experiencing [her faith] at a deeper level. So that’s what cancer has done.” She even discussed the serendipity found in some of her choices.
It was no accident that I went that Monday to do that Marian retreat, because I know-I
know now looking back that God was preparing me for what was coming, because during
that Marian retreat I was regaining that same kind of sense of peace,
Theme 5 Motherhood.
Most of her identity and her narrative can be defined by her role as a mother. In speaking of her daughter Ally and the potential for Ally to meet her birthmother and biological siblings,
Alba shared the following:
I'm her mother. I'll always be her mother. I didn’t give birth to her, but I forget that most
of the time. It just is not a part of me being her mother. Even with Bella, I mean. I know
no different and even if we had-had birth children afterwards, I don't see how there would
be any difference. There just couldn't be. They're yours. So someday, not now, I think
she’s still a little young, [I] wanna wait a couple more years, and I’m going to call her. I
want to meet her first. I just want to make sure everything is okay. I don't want Ally to, to Running head: CANCER SOCIAL SUPPORT NARRATIVES 108
umm, have a, I don't know why I want to meet her first. I just want to make sure she's in a
good place
As it relates to her cancer diagnosis and parenthood, one of her major concerns was for her daughters. She used them as her motivation to heal. Alba discussed the following concerns.
I think that was the hardest part about having cancer. You know, because you start to
think of, you know, before you know, you know, I was diagnosed and within nine days, I
was in surgery, you have a lot of time, you have a short period of time to think about a lot
of things. You know, before they take it out and you don't know what they're going to
find, how serious it’s going to be, and I start thinking about “they’re so young.” I-I
wasn’t afraid for me, because it’s eventually we all have to go there. We all die. I don’t
want to leave them that long, I mean so young. Especially Bella, (begins crying), because
I’m like, you know, she already has a hard time with her birth mother who abandoned her
and then I'm telling her “I’m here, I’m your mother, I'm not leaving you,” and what if I
do? How, you know, how devastating would that be for her? Whether she could express
it or not and you know, Ally just-just being, you know, through those teenage years are
already so difficult and you’ve just got school, you’ve got peer pressure, you’re not a kid.
You’re not an adult and then to lose your mother, I didn’t want that for them. I didn’t
want that to happen. Yeah, that was difficult. The cancer, for myself, didn't scare me,
because most of my life was behind me. I mean I hope I have lots more, obviously, but
umm, I’ve had a good life. But, it was for them. It was mainly for them. It was scary. I
did not want to leave them, not so young. Running head: CANCER SOCIAL SUPPORT NARRATIVES 109
Alba credits motherhood with keeping her motivated throughout her cancer journey. She
discussed her experience as a mother watching her daughter go through cancer as well as her
faith in her ability to overcome her ailments.
I knew-I knew what I was going through and I knew I'm a mom and I’m going to get
through this and I’m going to put up with whatever my body has to take. But, you’re
looking at your daughter and you...it helped to know what she was going through, but at
the same time not, because I couldn’t take any of that away. And I knew how awful it is
and the things it does to your body and I couldn’t take any of that away from her. All I
could do was hold her and say “it’s going to pass. It’s going to be okay. You’ll get
through it. It won't last forever. You’ll get better.”
Passion Topic: Rearing a child with special needs
Coping with her daughter’s special needs has been a bigger challenge for Alba then facing her cancer. Alba said that “because of having my daughter with special needs. There are, that in itself is a challenge...I think that's been more difficult than my cancer. So I think that helped me see my cancer in a different perspective.” Although Ally’s cancer and recurrence was clearly emotionally challenging, when speaking of Bella’s needs, Alba said “that is the hardest thing
I’ve ever done; even harder than Ally’s cancer. If, I know, you can’t imagine that anything would be worse than your own child's cancer, but special needs is (begins crying)” She describes what it has been like for her to parent Ally versus Bella. In referring to Bella’s interaction with the family, she stated:
She never came like to hug me, or kiss me, or anything. It just didn't feel the same way as it
did with Ally. I mean, had I not had Ally, I probably wouldn’t have known different or
noticed that the difference. Running head: CANCER SOCIAL SUPPORT NARRATIVES 110
Alba’s biggest challenge with Bella is dealing with her attachment disorder. Bella’s apparent inability to attach to Alba emotionally is a source of tremendous pain and also a motivator for
Alba to find the help that her daughter needs.
I didn’t care [about her] being mentally retarded, autism, the sensory issues, you know, it's
the RAD. It's the RAD that's been the worst thing ever. I can handle the others. They don't
even compare to the attachment disorder, but I think we’re in the right direction and I-I see
it and I feel it when I'm around her.
After twelve years of searching for a specialist, receiving various diagnoses, and numerous hours of therapy, Alba found a therapist that she believes can break-through to Bella.
She had, has already worked with children with attachment disorder, which is, out of all the
diagnosis that Bella has, that is the worst one. I can deal with everything else, but it’s the
attachment disorder, which is just has been horrific. Running head: CANCER SOCIAL SUPPORT NARRATIVES 111
CHAPTER 9
RESULTS
Introduction
Following verbatim transcription of the interviews, data analysis was completed through the use of Moustakas (2004) methodological interpretation of phenomenology. The transcribed narratives were read several times to obtain an overall feeling or essence. Themes emerged through repeated examination of the transcripts, lifting salient phrases or capturing key thematic meaning units that pertain directly to the lived experience of each participant’s cancer journey. I used a journaling process to reflect on each individual story in hopes of understanding the deeper meaning, intricacies, and nuances found in each experience. Through this process I was able to recognize the ways in which their stories connected with each other. Chapters 4-8 were initially read vertically to understand each person’s lived narrative. Themes were then formulated from the significant statements and phrases. Individualized themes were identified and extracted from each person’s story. Repeated reviews of the text made aspects of each participant’s lived experience reflectively understandable. The formulated meanings are gathered into collective themes allowing for the emergence of common themes across the participants’ narratives. In preparation for chapter 9 ,1 read horizontally, across the common themes to gain a better understanding of the collective experience of living with cancer. The outcome was then integrated into an in-depth description of the phenomenon.
The results represent an analysis of the original research question “who or what has been most helpful throughout your cancer journey?” Individual narratives are captured in chapters 4-8.
The full transcriptions can be found in Appendices F-J. Due to the number of significant statements, a sample listing of statements and themes are listed in Table 1. Five participants were Running head: CANCER SOCIAL SUPPORT NARRATIVES 112 chosen from a list of 18 potential study participants identified based on gender, ethnicity, tumor site, marital status, and variations in age. The intent was to find a cross section of the population without over representing a particular tumor site or experience. The selected individuals were acquainted with the interviewer with some level of distance. There was no difference in responses that could be attributed to age, race, gender or tumor site. Any differences were purely based on individual life experience, personal priorities, and varying coping styles.
From the five verbatim transcripts 307 significant meaning units were extracted. This is an
average of 61.4 salient meaning units per participant. The full transcriptions can be found in
Appendices F-J. Each transcript includes numbered lines for reference. Table 1 includes
examples of significant meaning units with their associated themes. Twenty-two individual
themes emerged. Individual themes are reflected in Appendices A-E. The tables are labeled
based on the individual participant number and corresponding lines from the individual transcription. Arranging the shared meanings from the twenty-two themes into clusters resulted in three collective themes. Table 2 contains the three clusters that emerged from the associated themes.
Table 1: Selected Examples of Significant Statements from Related Themes
Significant Meaning Unit Theme You have no idea how many times you pulled Role of support me back from the ledge Every part of this whole network has brought Support System something different I am not falling all out on the floor. I’m not screaming Coping Style and hollering Because it happens, you gotta deal with it. Acceptance / Coping Style This has brought a closeness in different relationships Post-traumatic Growth that would maybe not have been there Running head: CANCER SOCIAL SUPPORT NARRATIVES 113
If you’ve got a great attitude then you’re going to Coping have great success When they told me I had cancer I didn’t feel like Coping and Optimism I was ready to die I don’t know, I just had a feeling like, you know, Optimism we’re going to get through it some way I will be in treatment indefinitely Acceptance I’m going to call the insurance company and Advocacy I’m going to see what I can do for you I don’t worry about the future that much. Maybe Coping and Acceptance that’s a good thing that came out of it
Table 2: Individual Themes With Associated Clusters
Individual Themes Cluster Family, Friends/Neighbors, Physicians Community/Extrinsic Group/Cancer Wellness, Work, Lack of Support
Acceptance, God, Faith, & Religion The Self/Intrinsic Optimism, Philosophy, Coping Style Defenses, New Identity, Life-long Treatment, Efficacy
Advocacy, Lack of Information, Treatment Challenges Issue Bigger than Self Motherhood, Child w/cancer, Child with Special Needs
Clusters
The emergent themes were documented to reflect issues of importance to the study participants. Themes were combined to form clusters which captured the overall intent of the meaning statements to reflect the ways in which participants viewed their external community, their internal perspectives, and a third experience of issues beyond their control. The three clusters are intended to encapsulate and create a complete picture of their overall narratives. Running head: CANCER SOCIAL SUPPORT NARRATIVES 114
Cluster 1: Community/Extrinsic. This cluster reflects the role that support from other
individuals play in the lives of each participant. Themes here capture the influence of those
people in the participant’s life and vary from the role of friends and family to confidence in
caregivers. In this cluster participants focused on the individuals who provided the emotional or
task support that made the process of diagnosis and recovery easier. Descriptions were consistent
with the perception of feeling supported. The subthemes that comprise this cluster are Family,
Friends, Confidence in Physicians, Support Groups, and the effects of a Lack of Support.
Family. Each participant perceived support from at least one family member. Ann felt
supported by her daughters, especially her eldest and middle daughter. Jack received task related
support from his adult children, both near and far. Her husband and sister-in-law primarily
supported Fran. Daisy had support from her mother and son, but her partner is the individual that
demonstrated the most significant level of continuous and meaningful provision. Alba’s husband,
cousin, and niece were instrumental in her recovery. One of the most important roles as a family
member is to give the patient time to rest and heal in a low stress environment and to listen to the
patient without feeling compelled to fix his or her problems. Several of the participants
expressed some level of gratitude for their caregivers’ ability to take on additional
responsibilities, listen without problem-solving, or simply for the time and peace to cope in peace.
Friends and neighbors. Four out of five participants spoke at length about the importance of friends and neighbors. Ann formed a network of individuals who she could call upon depending on their strengths and her needs. There were friends that she spoke with annually, but she indicated, “when we talked, we picked up and it was like we never missed a beat, (sic) because that’s just how the relationship is.” This appears to be an important feature in the cancer Running head: CANCER SOCIAL SUPPORT NARRATIVES 115 narrative. Daisy also shared that she and her friends can “go two or three months without speaking, [but they] always seem to pick-up right where they left off.” Another common sentiment shared by Ann and Daisy was a sense of normalcy that friendships bring. Many patients and survivors want to avoid discussing their diagnosis with every interaction. Of her friends Daisy shared “they do distract me from cancer, (sic) They treat me like I’m normal. They don’t treat me any different than what they did before.” Ann spoke of a friend who made sure she remained active. Both Ann and Daisy are resolved in the belief that their friends and supporters will be there unconditionally. Fran had friends from out of town; each spending a week providing her with company and task support. Despite the fact that she did not ask for support, the individuals around her rallied to make sure her physical and emotional needs were met. Often times, it is helpful that supporters simply be present. As Fran stated “having the support in just them being there.” Daisy no longer relies on a broad circle of acquaintances, and instead focuses on the benefits of two immediate friends. Some of the strengths of friends are being a positive distraction and helping the individual focus on things other than cancer. Friends often help patients and survivors feel normal.
Confidence in physicians. Ann, Fran, and Jack each spoke about their pleasure with or confidence in the doctors. Ann was concerned about side effects, but trusted her doctor’s opinion and tried a medication anyway. Even those physicians who were unable to treat the patient received a nod of satisfaction. Jack appreciated the honesty of those doctors who were unable to treat him. He feels like he has been “very fortunate in having good care.” Fran was pleased with her surgeon’s level of knowledge and expertise. Ann felt comfortable with her primary physician, trusted the advice of her oncologist, and respected the opinion of her breast surgeon. It Running head: CANCER SOCIAL SUPPORT NARRATIVES 116
is essential that patients trust their physicians as they move through this often lengthy and
intricate medical process.
Groups. Alba is the only participant who attends a therapeutic or self-help group with any
regularity and her group is not related to cancer. Alba credits her RAD mom groups for helping
her to cope with various aspects of her life. Most of the group settings that the interview
participants engage in revolve around an activity such as exercise, drumming, crafting,
meditation, or cooking demonstrations where they have the opportunity to engage with other
cancer survivors. Fran participated in the Head and Neck Cancer support group for several
sessions and gained both education and insight that she had not received elsewhere. In
recounting her experience, she stated, “the group leader was helpful.” It is apparent this was a
fruitful experience for her; speaking with other survivors with a shared experience. Daisy
expressed similar desires regarding the importance of “talking to other people (sic) that have
been through it.” Ann stated that she and the members of the exercise class look forward to
seeing each other and become concerned when they have not seen someone for a while. Daisy
spoke at length about the importance of her mindfulness class and the impact that the facilitator
and other participants have had on her life in regards to cancer, feeling accepted, her overall
outlook, and dealing with individuals in her life. She reiterated the importance of feeling normal
and mentioned that is one of the reasons why she attends classes at the Cancer Wellness center.
Beyond the therapeutic paradigm, groups should be conceptualized in a broader sense to include
any activity where survivors have the opportunity to connect and engage with one another.
Lack of support/Loss of friends. Daisy spoke about clearing her life of negative people. She
seems to focus on a smaller group of friends and family that support her positive outlook. Fran was very confused and disappointed by an individual that she believed was a good friend, but the Running head: CANCER SOCIAL SUPPORT NARRATIVES 117
person stopped responding during her diagnosis. According to Fran “there’s a couple of people
that just fade away.” A typical observation made by individuals in treatment, Fran surmised,
“some people just don’t know how to deal with stuff.” Ultimately both Daisy and Fran came to
the conclusion that “you (sic) find out who your friends are” when you are diagnosed with a
potentially terminal illness. A cancer diagnosis can be very difficult for individuals to face. That
includes family, friends, church members, and neighbors. Fran seemed to mourn the loss of
friendships more than Daisy.
Cluster 2: The self/intrinsic. This cluster of themes represents the ways in which each
individual dealt with his/her diagnosis, feelings regarding his/her treatment process, and the ways
in which they accepted or coped with the process. It is an outward reflection of intrinsic
motivators. This cluster includes the following individual themes: God, Faith, & Religion,
Acceptance, Optimism, Philosophy, Coping Style, Defenses, New Identity, Life-long Treatment,
and Efficacy.
God/Faith. One of the justifications for adding the themes of God, Religion, and Faith to the cluster containing coping and acceptance is the following statement made by Ann. “I prayed
about it and I said, I have peace about it. And I said it is because of my faith in God that I am able to accept.” Alba assigns most of the credit for her healing to her faith. Although Daisy
stated that she knows that God is the only reason for her survival, she is very adverse to organized religion. Most of the participants described their faith as a spiritual connection, understanding, or awareness void of religious dogma.
Acceptance/Optimism. For Jack the diagnosis is part of the aging process. He said, “so, I guess once you get past 60, its sort of part of life.” Fran added, “I can’t do anything to change it, just go through and (sic) just deal with it.” This acceptance of the diagnosis and potentially death Running head: CANCER SOCIAL SUPPORT NARRATIVES 118 is related to their individual coping skills, but also reflects their underlying belief that they could deal with whatever may come and they would ultimately heal. Ann remarked that “when the world throws [her] lemons, [she throws] them back, and demands chocolate.” Jack reflected, in five different meaning statements, his belief that he was going to live and that he knew he would
“pull through it somehow or another.” His positive outlook is pervasive in his life. He disclosed,
“I always feel like things are going to work-out.” This sentiment was shared among the participants. Fran said, “I felt like everything is going [to] be okay, so I didn’t really get upset or anything.” A combined sentiment of acceptance and a reflection of her coping style, Daisy remarked, “you can’t fix this. You just have to deal with it.”
Philosophy. Ann and the other participants are “optimistic about the future.” Ann said that cancer has given [her] a different perspective on a lot of things.” She continued by saying
“really on life and how fragile it is.” She further added, “it [has] strengthened [her] as a person.”
She believes that she is “stronger because of what” she has experienced. Jack shared “I don’t worry about the future that much. Maybe that’s a good thing that came out of it.” His recommendation is to live “one day at a time and just enjoy life.” According to Daisy, “cancer has been (sic) a blessing in disguise.” She also expressed “I live for every moment. Every moment. Make the most of it.” Ann expressed it best when she stated:
It is important that people know that when they have been diagnosed that sometimes you,
they say umm, you take one day at a time, sometimes you can’t do that. Sometimes you
have to take one hour at a time, sometimes you have to take one minute at a time, you
know, it's is no magical thing, you know, but you have to do whatever you need to do to
get through what you’re going through. Running head: CANCER SOCIAL SUPPORT NARRATIVES 119
Coping style/Defenses. Each person’s coping style influences the type of support that he
or she receives. Being out-going, vocal, and resourceful has helped Ann get the support she
desires without compromising her boundaries. Jack did not demand emotional support from his
family, but seemed very open to involving as many people as possible when he needed assistance
with receiving ample medical coverage. Similar to Ann, Alba has a global network that she is
comfortable calling-on for both individual and familial support. Daisy faced challenges with
letting her guard down, but through building trusting relationships, she has learned the difference
between individuals she can rely on and those who trigger negative thoughts and feelings. With
Fran, the people around her seem to anticipate her needs and meet them without request.
Life-long treatment. Jack and Daisy will always be undergoing some form of treatment.
Both participants seem to accept this fate and continue to persevere. For anyone that has ever
been diagnosed with cancer, there is always a looming concern of recurrence. All cancer patients
are faced with the potential relapse, but it is important that they not allow these thoughts and
fears to negatively affect their quality of life. The participants in this study are not consumed
with the cancer. They have chosen the resources that help them deal with it and many have
moved on with their lives.
Cluster 3: Issues bigger than self. The final cluster reflects the often-unexpected issues that people face in coping with their cancer journey. Physicians and caregivers are often focused on the medical aspects. The first order is getting rid of the tumor through a course of treatment.
Ironically, no one is diagnosed in a vacuum. Having cancer does not necessarily absolve the individual of his or her responsibilities to work, provide for family, or cope with other challenges in life. The themes below reflect issues the participants faced that were external to the self. Running head: CANCER SOCIAL SUPPORT NARRATIVES 120
Advocacy. Jack’s recognition that many other people will be faced with an insurance company that denies treatment and they may not be as fortunate as him to find individuals who can legislate and advocate on their behalf is an example of his ability to turn a personal triumph into community action. Fran’s theme of a Lack of Information has implications for future patients as well. The knowledge that she could potentially lose her hearing was jarring for Fran.
She would have preferred to be told about the potential hearing loss, coordination challenges, and the long-term side effects of radiation therapy from her doctors. Instead, other survivors informed her. Fortunately, she took it upon herself to see an Ear, Nose, and Throat specialist who told her that she would no longer produce earwax, but she will retain her hearing. Some patients who successfully navigate their own challenges have the passion, energy, and wherewithal to steer others through the peripheral challenges as they approach their own survivorship and look back on their cancer experience.
Alba is more focused on her daughters’ needs than her own. The theme of Motherhood was the prevalent topic in her narrative. Alba completed her course of treatment, but it was
“because we’re trying to hold it together and stay focused for Ally.” When she was diagnosed,
Alba concentrated on moving through her own treatment quickly. For Alba, her eldest daughter’s condition and her youngest daughter’s needs superseded her own. She is grateful that she survived, primarily, to meet the needs of her family. What kept her motivated is the following belief, “those things that you thought were hard, difficult, or stressful, you have to think, but I am here.” For Alba, “it was more overwhelming when [her] daughter was diagnosed with it than
[herself].” In describing what helped her through the process she disclosed “it was mainly for them (sic) I did not want to leave them so young.” She can gauge her own ability to fight the disease and endure, but she cannot fight to heal on her daughter’s behalf. This was clearly a Running head: CANCER SOCIAL SUPPORT NARRATIVES 121
challenge and an ongoing fear for Alba. Some patients neglect their own treatment all together,
because they are placing the immediate needs of others ahead of themselves. It is the airplane
analogy; you have to place your own facemask before helping others. Otherwise, you put
yourself at risk for not being there to support your loved ones long-term. Both Jack and Alba
took time to care for themselves prior to focusing or refocusing on the needs of others.
New Identity/ Self-Discovery. Cancer offered personal growth and realizations for each of
the participants. Ann, Jack, Alba, and Daisy discovered personal strengths that were not at the
surface. Ann and Alba have both made changes in their lives to help them acknowledge and
uplift others in need. Ann lost family members during the year that she was in treatment, but
gaining twin granddaughters afterward has helped her better appreciate the fragility of life.
Daisy’s losing a job, finding a great relationship, and perhaps herself along the way has inspired
her to evolve into her full self. Although the initial diagnosis is traumatic, many patients find
existential meaning through the resolution of their cancer journey.
Analytic Themes
These are themes that did not come directly from the text, but were derived through the composite analysis of the transcriptions. The first theme that was purely driven through analysis is related to the affects that bureaucracy and systems have had on the patient experience. Jack’s challenges with the insurance company were driven out of rules that are in place to benefit large corporations instead of the individual consumer. Fran’s lack of information from her doctors can be credited to the constraints on the medical system and perhaps an oversight on the behalf of her caregivers. The second theme is an observation of the importance for patients to avoid or suspend reality. As mentioned before, the world does not stop spinning just because the individual has been diagnosed with cancer. However, for those fortunate enough Running head: CANCER SOCIAL SUPPORT NARRATIVES 122
to have the opportunity to find outlets that allow them to withdraw from the rest of the world, it
is often beneficial for their healing and recovery.
The Machine. Fran continued to work despite her illness. It is difficult imagining her
working when she was vomiting blood, however, she managed to endure. The lack of
information received from her doctors goes beyond rest, recovery, and the self. She is a flight
attendant. Her potential hearing loss could have ended her career. That is an important side effect
that should have been discussed with her. She also had to focus on seeking information and
knowledge that was not offered to her voluntarily by her treatment team. Jack having to fight
with the insurance company to get the care that he needs and deserves is just another example of
issues faced by patients that go above and beyond family stress and the actual course of cancer
treatment.
The Bubble. Anytime an individual is diagnosed with cancer, there is hope that he or she
will have the opportunity to heal and recover in a tranquil oasis, but at some point everyone has
to come back to reality. Life goes on. The patient is dealing with issues beyond healing and
recovery. The world continues to move and these individuals must live in dual realities. One in
which they may be battling for the lives and the future and another in which they are maintaining
a grasp on managing what is occurring in the immediate environment. For those fortunate, there
may be a place or space where they can find peace and tranquility. The participants in this study
give the impression that they had the privilege of finding this opportunity, but many people are not afforded such luxury. Alba spent time alone reflecting and praying without having the responsibilities of house and home for a brief period of time. Daisy referred to her experience in the mindfulness classes and participating in Cancer Wellness as an opportunity to get away from
“real life.” There are clear healing aspects in these existential experiences. Running head: CANCER SOCIAL SUPPORT NARRATIVES 123
Composite Summary
The composite summary includes a description of the essence of the cancer experience
shared across participants. The first key theme of the lived experiences with cancer is social
support. There are multiple ways in which people support each other and cope with cancer. On
this small scale, the essence of the experience is the participant’s perception of his or her needs
and how others are addressing those desires. The experience is embodied by a feeling of
consistency, reliability, having one’s needs met, positive influences, having the opportunity to
heal, and personal space to reflect. The essence of the experience includes hope and a firm belief that one will recover, live, and thrive. Consistent with the literature, participants in this study considered social support to be a key factor in their ability to survive and cope with their cancer diagnosis.
Participants in this study had similar strategies for coping. A major coping strategy has been their individual abilities to ask for, advocate for, and communicate their needs through self- efficacy. Each participant emphasized the importance of having a positive attitude and outlook, hope, and faith in dealing with their diagnosis. Variations in coping style as well as efficacy has a direct impact on the individual’s ability to ask for and receive support from friends and family as well as getting medical questions and concerns addressed.
Each participant faced issues that were above and beyond his or her cancer concerns. A change in health status resulted in a change in identity, family roles, professional status, and/or the ways in which the participants interacted in their community and social networks. Cancer impacts all aspects of the patients’ lives. Participants in this study shared concerns regarding their survival, but also disclosed other issues of importance. Similar to literature on post- traumatic growth, several participants in this study grew spiritually and emotionally as a result of Running head: CANCER SOCIAL SUPPORT NARRATIVES 124
his or her cancer diagnosis. One participant referred to her diagnosis as a blessing because it
challenged her to change her social and emotional environment.
CHAPTER 10
DISCUSSION, CONCLUSION, AND RECCOMENDATIONS
Discussion
In this study individuals living with cancer focused on the aspects that were most helpful
to their process. Participants expressed the importance of social support, shared their individual
coping strategies, and revealed additional concerns faced throughout their treatment process.
Each participant approached his or her diagnosis with a level of optimism. Upon diagnosis, one
participant temporarily focused on the potential of death, but through interactions with other
survivors, she began to concentrate on living. Each person has his or her reason for fighting, but
in the end all were determined to overcome the disease. Even the two participants who face
unending treatment have remained positive and optimistic regarding his or her prognosis. Hope
and optimism were reflected in their outlook on life, through personal relationships, or the role
of faith in their recovery. Several participants saw a connection between his or her diagnosis
and personal growth. The results of this study indicated that social support; coping style and
efficacy are important features in survivorship; as stated in the literature. This study extends the
literature by examining the factors beyond the disease and its treatment that affect the patient’s
everyday lives.
External
Through narrative, patients are able to externalize their challenges and view them objectively
(Carlick & Biley, 2004). Participants in this study viewed their cancer as something that was in their bodies, but separate from them as a person. Externalizing the problem enables the patient to Running head: CANCER SOCIAL SUPPORT NARRATIVES 125
reduce emotional distress (Bolton, 2000; Holmes, 2000) because the issue sits outside of the
subjective self. Participants in the current study certainly view cancer as the problem and as an
object separate from the concept of self. Beyond externalizing the problem, participants reflected
an appreciation for those peripheral resources that helped them cope with their diagnosis.
Social Support
The experience of social support in regards to a cancer patient or survivor’s collective set of
relationships with others is a central theme in the patient’s experience living with his or her
diagnosis. The collective set of relationships applies both to previously established relationships
with friends and family members as well as new friendships and support networks developed
through the diagnosis and treatment process. Results from this study reflect accounts of support,
coping, and efficacy beliefs as a part of the cancer experience. Unlike the observations made by
Dunkel-Schetter (1984) or Helgeson and Cohen (1996), participants were partial to informational
support from other survivors as well as medical staff. Consistent with Peters-Golden (1982),
patients do not want unrealistic appraisals of health or a false sense of health outcomes.
Participants in this study appreciated honest, candid, and realistic feedback regarding his or her
prognosis.
From the literature, it has been determined that the closeness of the supportive relationship
was an important predictor in rating of support satisfaction (Crother et al., 2005). Participants in this study relied heavily on a spouse, partner, physician, adult child or extended family member.
Study participants were satisfied with the level of support received. The expression of genuine emotion, either positive or negative, can increase the connection found between cancer patients and their family members (Owen et al., 2006). Study participants highlighted the value in being able to express themselves openly and honestly with family members; regardless of whether or Running head: CANCER SOCIAL SUPPORT NARRATIVES 126 not the content was positive or negative. Observations from this study emphasize the significance of patient’s having a forum where they can genuinely express a range of emotions.
The threat of illness challenges the individual to mobilize his or her internal and external resources (Weisler, 2006). The participants in this study mobilized support; consistent with what was found in the literature.
Internal
The Self
The self is a social construct, but through personal agency the self works to effect social systems (Bandura, 1999). Some individual possess an innate ability to attract others and gamer support. Other people have to work in a very deliberate and intentional way to express support need. As demonstrated through this study, both personality types are able to have their needs met through efficacy. Self-efficacy refers to the way in which people deal with unpredictable or stressful events (Bisschop, et al., 2004). Self-efficacy beliefs determine the goals people set, the amount of effort expended, length of perseverance, and how they deal with both failures as well as setbacks (Bandura, 1997). The participants in this study faced differing challenges. Some were isolated from their family of origin and were inspired to create a new sense of community.
Other participants struggled with work, finances, or family obligations. As reflected in the literature, efficacy is an essential feature in cancer patient success. There comes a time when all patients have to advocate for themselves, have their concerns acknowledged and addressed, and ask for assistance. Efficacy beliefs influence how emotionally taxing experiences are perceived and ultimately processed (Bandura, 1999). Patients who are overwhelmed by the stress of cancer and its treatments have a more difficult time reaching a recovery stage. Efficacy beliefs Running head: CANCER SOCIAL SUPPORT NARRATIVES 127
are an instinctive behavioral reaction that facilitates cancer patients’ ability to adjust (Koho et
al., 2009).
Adaptation leading to Advocacy
Similar to the results found in this study, Alfonso and Rowland (2006) discovered among
cancer survivors who manifest resilience in the face of illness, two factors are consistently found
to be associated with successful adaptation: perceived social support, especially from the
spouse/partner, and coping style. Several participants in this study accepted their diagnosis and
embraced his or her treatment plan right away. Consistent with the literature, it took one patient
some time to adapt. Her ability to adjust came through support from other survivors. According
to Bandura (1999 and 2007) efficacy promotes feelings of altruism. Similar to Ann in this study,
who had a desire to care for others, the study by Makebe and Hull (2000) cited a population of
individuals who increased the amount of support they gave to others as a result of their own cancerjourney.
Coping Style
The assumption of a coping style approach is that coping will reflect enduring attitudes and behaviors, similar to a personality trait (Lazarus, 1998; Brennan, 2001). Participants in this study revealed a pervasive positive attitude when faced with challenges in their lives. They displayed an awareness and acceptance of both the positive and negative aspects of life similar to the reports of Taylor and Brown (1988). Despite their optimism, participants in this study were accepting of both the diagnosis and the inevitability of death. From the literature referencing control, self-esteem refers to the person’s need to appraise his or herself from a positive perspective (Bisschop et al., 2004). Each of the participants in this study maintained a positive outlook and hopefulness as it relates to their diagnosis. Their optimism was viewed as a positive Running head: CANCER SOCIAL SUPPORT NARRATIVES 128 coping mechanism. The ability to cope is frequently considered the most important factor in recovery and health maintenance (Weisler, 2006). The participants’ ability to remain optimistic and hopeful serves as a protective buffer from depression. Coping involves a wide range of deliberate thoughts and actions, including avoidance behaviors as well as support seeking (Lakey
& Orehek, 2011). Avoidance behaviors increase under life-threatening conditions (Van Dijk,
Seger-Guttmann & Heller, 2013). All but one participant dealt with their diagnosis head-on from the beginning, one participant had to learn skills that helped her move beyond her initial death fears and a desire to avoid others.
In this study we observed deliberate efforts to avoid people who were identified as negative.
Coping is dynamic and affected by personal experience (Carlick & Biley, 2004) and practiced methods of dealing with adversity. Perceived support has a strong influence on coping (Cicero et al., 2009). There is empirical evidence highlighting that individuals who are optimistic when confronted with realistic appraisals of illness have lower levels of anxiety and depression than patients who feel hopeless and helpless (Cicero et al., 2009). Most of the participants in this study were confident that they would survive beyond the diagnosis and treatment. According to
Cicero and colleagues (2009), optimistic patients have longer survival rates (Cicero et al., 2009).
Zhou and colleagues.(2010) determined higher levels of adaptive coping at baseline partially mediated the relationship between social support and emotional well-being among a prostate cancer population. Cancer changes how individuals relate with other people; having a direct impact on the ways in which friends and family relate with the patient (Van Der Molen, 2000).
Two of the participants in this study observed an apparent change in behavior by friends as a result of her diagnosis. As evident in this study, coping style has a direct influence on the types of support that individuals receive. Previous research by Cicero and colleagues (2009) has Running head: CANCER SOCIAL SUPPORT NARRATIVES 129 determined that adjustment is correlated with the degree to which cancer patients feel they can share their concerns with significant others. Individuals with high self-efficacy attract support from others, reinforcing his or her ability to cope (Bandura, 1999). Patients need a space where they can be genuine and honest regarding their fears and concerns.
Coping Support
Savelkoul and colleagues (2000) cited a reciprocal relationship between social support and coping highlighting the fact that both constructs influence subjective well-being.
Interpersonal relationships play a key role in the way people cope with distress and adjust to crisis (Cicero et al., 2009). Being socially ineffective contributes to depression (Bandura, 1999).
The link between perceived support and mental health is often reflected through social interactions (Lakey & Orehek, 2011). Participants in this study did not express any alarming mental health concerns, but three participants discussed the role of depression within the context of cancer, and one questions her ability to express her true emotions regarding her ordeal.
Coping does not explain the link between perceived support and mental health (Lakey & Orehek,
2011). A contributing factor to distress is a lack of social support (Dickerson, Alqaissi, Underhill
& Lally, 2011). Participants in this study acknowledged a feeling of adequate support; which they believe assisted a feeling of well-being. According to Zhou and colleagues (2010), there is still limited research investigating how social support and the use of coping may affect the emotional well-being of this population following treatment. These findings have a direct impact on therapeutic practice. Counselors and oncology social workers can aid in helping patients understand the role they play in their ability to cope has a direct impact on the support they receive in return. Therapists can facilitate patients’ understanding of the methods for expressing Running head: CANCER SOCIAL SUPPORT NARRATIVES 130 their needs clearly and help clients work on the ability to identify and request the support they require.
Supportive Others
As described by Alfonso and Rowland (2006), patient centered support groups can offer a
normalizing experience for patients struggling with post treatment concerns and survivorship.
Participants in this study acknowledged the benefits of interacting with other individuals who
are facing similar health, medical, and social challenges. In a study by Giese-Davis (2002), a
participant described the group experience as a place where she could express her emotions,
gain acceptance, and express herself openly. Similar to the findings by Giese-Davis,
participants in this study reflected comparable benefits from engaging in-group activities.
Notable in the literature on social support are the negative consequences of unsupportive social
interactions (Jones et al., 2012). Participants in this study spoke highly of their support systems
and did not disclose adverse effects from close individuals who were providing insufficient
support or care. There is limited information in the literature regarding the impact of social
support on cancer patient narratives.
Bigger than Self
The literature addresses external factors and internal buffers well, but I found a third element not addressed in the literature. The issues and challenges in life that go above and beyond cancer or the treatment process were evident in this study. One of the major findings in this study was the effect of the machine; those issues that are beyond the patient’s diagnosis or control. Participants in this study faced challenges with returning to work, insurance, and parenting. Low-income patients also deal with financial or housing concerns that may interfere with treatment and recovery. The other finding in this study is the importance of what has been Running head: CANCER SOCIAL SUPPORT NARRATIVES 131
labeled as the bubble, which refers to having individuals to defer to when things need to be done
as well as having a peaceful low-stress environment in which to heal and recover. As previously
stated by Van Der Molen (2000), cancer is not the only event in an individuals’ life, and it cannot
be processed in isolation.
Conclusion
Although the importance of social support has been well established empirically
throughout the literature, there are few studies validating the role of social support on health
outcomes. Social support provides individuals with the capacity to build improved coping skills
and increased optimism. There are even less data on narrative approaches to working with
patients beyond a breast cancer population. This study gives a voice to patients regardless of
tumor site and has implications for mental health clinicians in a medical setting. Through the
collection of narrative data, the patient hears him or herself putting feelings into words, the
researcher gives reflective feedback through the co-construction of the narrative, and the
participant rechecks this reflection to verify congruence or whether or not it simply “feels right,”
finally a representation or story is formed (Greenhalgh & Hurwitz, 1998). Successfully captured
phenomenon is complex in structure, extensive in scope, and consists of subtle features that
would prohibit participants from spontaneously offering meaningful details through more
structured methods (Wertz, 2005).
Recommendations
Implications
The first implication that could be derived from this study would be confirming that patients are able to access their support systems in a way that feels complete and comfortable to that individual. If he or she reports low levels of support, it would be helpful to find traditional Running head: CANCER SOCIAL SUPPORT NARRATIVES 132
support groups or activities where the individual can interact with other survivors. The second
implication would be to assist patients creating a place of peace and tranquility. Cortisol, the
stress hormone, has high correlations with cancer diagnoses and recurrence. The final
implication is to support patients as they navigate through various medical processes. Some
hospitals employ nurse navigators whose job is to educate patients regarding side effects,
symptoms, and individual concerns. Cancer centers have some responsibility for providing
information on all the potential side effects in a way that is clear and easy to reference. Hospital
systems can also create opportunities outside of doctor’s appointments for patients to meet and
greet the treatment team in an open forum allowing patients the opportunity to ask questions
regarding treatment concerns and potential side effects.
Further practice implications arising out of these findings include the need to examine and
address patient concerns that go above and beyond medical treatment. As observed by Alfano
and Rowland (2006), the growing population of cancer survivors represents a clear challenge for clinicians and researchers to look past the search for a cure and address the multifaceted needs of those living with cancer beyond the diagnosis. Future narrative studies with cancer patients could focus on coping skills and the effects of participating in traditional therapeutic support groups versus groups centered on a specific activity. This study suggests the use of phenomenological techniques by counselors and oncology social workers to better assess and address patient needs, teach coping skills through role-plays and feedback, promote self-efficacy through assertiveness skills to ask for the support they need, and assist patients in navigating through the information embedded within the medical process. Future research is still needed to identify the potential indirect effects of narratives on intentions and behavior (McQueen, 2011). Researchers and practitioners have eloquently described the need to create meaning systems or exploratory Running head: CANCER SOCIAL SUPPORT NARRATIVES 133
models for effective coping with an adaptation to illness (Rolland, 1994). Lazarus suggests
focusing on the specific threats and immediate concerns of the patient, rather than broadening the
focus of attention to overall illness (Brennan, 2001). These models could lead to interventions
that help patients build upon their current coping skills, optimism, and a sense of hope for the
future. Patients should be encouraged to actively cope to reduce cancer-related stress.
Interventions include engaging in enjoyable activities, seeking and maintaining supportive
relationships, considering the meaning and purpose of the illness, and active acceptance, and
emotional expression, which is a powerful active coping strategy. Acceptance involves
acknowledging that something serious has happened, and trying to move forward to deal with it.
Normalize the experience by encouraging patients to participate in their lives in normal ways,
which has been found to restore confidence and self-esteem (Brennan, 2001). As recommended
by Zhou and colleagues (2010), attention should be given to strengthening social support
networks and educating survivors on adaptive coping techniques. The participants in this study
are a great example of the positive outcomes that are a result of strong and satisfying social ties along with the use of adaptive coping skills.
Final Note
Cancer is a strange gift. As noted by one of the participants, no one wants cancer, but once you or a loved one is diagnosed with cancer, you just have to deal with it. As a part of a pilot study in preparation for this research, I met with participant zero, who we will refer to as
Dee. Four out of five participants in this study referenced Dee in their narratives. Dee lost her battle to stage four breast cancer in April of 2014. She is deeply missed. Below are statements from the participants of this study reflecting on the impact that Dee and in their lives. In sharing Running head: CANCER SOCIAL SUPPORT NARRATIVES 134
their statements, I hope o highlight the importance of peer support and also honor the life and
memory of our beloved “Dee.”
Participant 1: in reference to Dee:
And one of the people that was really that really got me into doing yoga was Dee. I mean
the first day that went when I wasn’t so sure this was something I wanted to do...(sic). So
she met me with her effervescent smile and she was just all over the place, (sic) and she
was just so embracing and just so loving, and her hair was like none, I don’t think she had
any hair then. As she was just celebrating “oh, I’m so glad to see you,” and I kept going
back because of her. Because she was just that kind of person that kept pulling me in, you
know? And umm...she used to make sure, she would put my mat right next to hers. And
we used to work-out and [it was] just really really good,
Participant 2:
I remember the first day I came, umm, Dee was the first thing that like, you know, kind
of like embraced me and said hey, we’re so happy to you and she was so bubbly and
stuff. I jus really hate that about her.
Participant 4:
What’s helped me through? Positive people, like my Dee. We need six more Dee’s here.
Because if it weren’t for Dee, I wouldn’t be here, because I just didn’t feel welcome at
first. Because I do have- had my wall up and Dee was just one of those people that
reached out and pulled you in, regardless. So, now I (sic) am trying to do what Dee did.
Like everybody else is trying to do. But it’s just the positive people that have just turned
my life totally around.
Participant 5: Running head: CANCER SOCIAL SUPPORT NARRATIVES 135
But I remember Dee, that’s where I met Dee. Yeah, I love that woman. She {was} so full of life. Running head: CANCER SOCIAL SUPPORT NARRATIVES 136
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APPENDICES Running head: CANCER SOCIAL SUPPORT NARRATIVES
APPENDIX A
PARTICIPANT 1 THEMES Running head: CANCER SOCIAL SUPPORT NARRATIVES 150
Church/God/ Family Friends/N eighbors Efficacy: Building a Confidence in Spiritual Network Physicians/Hosp. Staff 1. 55 1. 55 1.415 1. 17-20 1.48-50 1. 67-69 1.204-208 1.420-434 1.44-45 1. 141 1. 166-171 1.236-246 1.440-441 1. 76-77 1. 179-180 1. 217-223 1. 387-388 1.453-459 1. 84 1. 189-192 1. 26-229 1.410-412; 413-414 1.492-493 1. 88-93 1. 210-211 1. 316-322 1.420-438 1.497-500 1. 89-92 1. 531 1. 496-497 1. 458 (network) 1. 153-158 1. 513-530 1.469-470 1. 230 1.492-493 1.497-498 1. 505-506 1. 507-510
Coping/Optimism Group/Cancer Support to Others Philosophy Wellness 1.33-34 1.307-308 1.88 1. 158 1. 585-598 1.42-44 1. 364-365 1. 97-100 1. 545-547 1.612-617 1. 50-53 1. 369 1.102-111 1. 552-577 1. 54-56 1.469 1. 133-117 1.63-67 1. 530-532 1. 118-123 (1.553-555; 1. 558-559; 1. 73-74 1.534-535 (the 1. 128 1. 562- 568) 1. 126-127 “gift”) 1. 131 1.535-536 1. 142-143 1. 542-544 1. 181-183 1. 548 1. 187-188 1.602-603 1. 194-204 1.611-616 1. 213 1.216 1.282 Running head: CANCER SOCIAL SUPPORT NARRATIVES 151
APPENDIX B
PARTICIPANT 2 THEMES Running head: CANCER SOCIAL SUPPORT NARRATIVES 152
Philosophy Family Infinite Treatment Confidence in Physicians
2. 50-53 2. 34-36 2. 9-15 2.4 2. 338 2. 106-107 2. 19 2. 24-26 2. 133 2.165-167 >. 313-319 Acceptance Coping/Optimism Self-Advocacy (External) Advocacy
2. 23-24 (acceptance) 2. 29-30 2. 242 !. 108-111 2. 45-46 2. 39-40 2. 245-246 2.235 2. 125-126 2. 45-46 2. 269-275 ». 239-241 2. 141-142 2. 53 2. 260-261 2. 148-149 2. 127-128 Passion Topic:Insurance 2. 233 2. 142 2. 214-234 2. 235-236 2. 150-151 2. 290-291 2. 160-161 2. 292-294 2. 326-327 2. 296-301 2. 304-306
Fear Work Metaphor Fatigue
2. 58 2. 59-66 2. 127-128 2. 143-144 2.61-66 2. 206-208 Running head: CANCER SOCIAL SUPPORT NARRATIVES 153
APPENDIX C
PARTICIPANT 3 THEMES Running head: CANCER SOCIAL SUPPORT NARRATIVES 154
Lack of Family Spouse/Family Friends/Neighbors Confidence in W ork Support Physicians/Hosp. Staff 3. 155-159 3. 79-89 (worried spouse) 3. 8-9 3. 708-710 “Friends” 3. 164-169 3. 131 3. 14-24 3. 732-744 3. 239-240 3. 176-177 3. 325-335 3. 66-75 3. 242-246 3. 187-190 3. 468-470 3. 122-129 3. 283-297 3. 194-195 3. 634-635 3. 214 3. 216-218 3. 232-238 3. 243-246 3. 471-473 3. 700-704
Loss of friends Job 3.297-310 3. 390-400 3. 312-314 3. 673-680 3. 685-687 Treatm ent Coping/Optimism Not Reaching Out Group/Cancer Lack of Challenges (Coping Style) Wellness Information 3. 7 3.95-96; 102-103; 112- 3. 314-319 3.4-5 3.49-51 3. 149 113 (quick decision) 3. 582; 586; 589 3. 32-37 3. 119-120 3. 196-202 3.463 (private) 3.41-43 3. 741-743 3.401-407 3. 477-478 3. 251-259 3.411-413 3. 484-485 3. 272-273 3.415-420 3. 490-501 3. 453; 462 3. 425-427 3. 506-513 (depressed) 3. 517-524 3. 429-430; 433 3. 538-540 3. 465-467 3. 555-556 3. 558-560 3. 565-568 3.615-616 Running head: CANCER SOCIAL SUPPORT NARRATIVES
APPENDIX D
PARTICIPANT 4 THEMES Running head: CANCER SOCIAL SUPPORT NARRATIVES 156
Church/God/ New Identity Friends/Neighbors Family Philosophy (Post Spirit/ traumatic growth) Faith 4. 410-416 (tattoos 4.20-23 4.547-554 4. 185-188 & piercings) 4.52-54 (social 4.29-33 4. 194-196 4.417- 4.19 butterfly) 4.36-39 4. 536-538 4.456 4.67- 69 (social 4.44-45 4. 543 4.473-475 butterfly) (blessing in 4.511 4.88-89 disguise) 4.126-133 4.138-140
Loss of friends Partner 4.55-60 4.472 4.74-78 4.500-502 4.91-93 4.521 4.530-532 Life -long Coping/Optimism No “I’m so sorry” Group/Cancer Wall/Defenses Treatment Wellness 4.95-96 4.33-34 4.6-8 4.4-6 4.10-14 4.433-438 4.67-69 4.157-163 4.8-11 4.333-338 4.69-70 4.168-171 4.15 4.344-346 (Depression) 4.144-145 4.208-209 4.212-227 4.247 (Neg. 4.265-266 people) 4. 277-282 4.265-266 4.320-328 4. 403-406 4.362 4.417-419 (Death 4. 372-386 fears) 4.523-524 (reduced stress) 4.525-526 Running head: CANCER SOCIAL SUPPORT NARRATIVES
APPENDIX E
PARTICIPANT 5 THEMES Running head: CANCER SOCIAL SUPPORT NARRATIVES 158
Faith Motherhood Her Cancer Family & Friends 5.4-5 5. 353-358 5. 587-592 5. 8-9 5. 7-8 5. 367-370 5. 611-625 5. 9-11 5. 20-27 5. 380-386 5.41-45 5. 32-40 5. 504-507 5. 227-236 5. 64-71 5. 524-529 5. 643-645 5. 208-220 5. 569-574 5. 646-652 5. 386-389 5.574-579 5. 657-664 5. 780-781 5. 593- 608* 5. 694-704 5. 787-791 5. 795-799 5. 712-719 5. 804-812 5. 723- 724 5. 760-763 Daughter with Daughter with special RAD Moms- Coping Ovarian cancer Needs support group 5. 47-52 5. 44-47 5. 285-288 5. 53-56 5. 140-141 5. 71-73 5. 844-846 5.57-60 5. 144-149 5. 99-103 5. 856-860 5. 149 5. 153-159 5.246-249 5. 204-206 5. 175-176 5. 265-269 5. 220-223 5. 187-199 5.282-283 5. 626-635 5. 207-208 5. 309-318 5. 748-755 5. 324-325 5. 763-768 5. 326-328 5.773-779 5. 335-338 5. 813-819 5.401-405 5. 827-831 5.414-419 5. 437- 438 5. 447-452 Running head: CANCER SOCIAL SUPPORT NARRATIVES 159
APPENDIX F
PARTICIPANT 1 FULL TRANSCRIPTION Running head: CANCER SOCIAL SUPPORT NARRATIVES 160
1 One of he most interesting things happened today before the luncheon the lady in the black dress 2 from Eli Lilly.. .we were talking about Eli Lilly and I said I have a 3 Niece that works for Eli Lilly and she said really? And I said she works in the New Jersey north 4 area. And she said special? And I said yeah, and she said what’s her name and I said Tamara 5 Adkins. And she said, huh... she works for me. Yes, it’s a small world. And I said it’s a small 6 world. Anyway. 7 8 So, umm, I do need little background information on you. What’s your birthdate? 10/8/1947. 9 And what was your diagnosis? What was it? DCIS pre evasive stage zero breast cancer. What 10 did you have done? Did you have surgery and lumpectomy? I had a lumpectomy done. First I 11 had a biopsy and then I had a lumpectomy done in June and then followed that with 30 12 treatments of radiation. 30? (Tavari) And no chemo? No chemo, and then once I finish that I 13 finished in September I started taking tamoxifen. I was reluctant about taking tamoxifen because 14 they said it would put you in post menopause. Would bring back, that menopause would start 15 again, and you know I didn’t want that. They also said you would gain weight. So I told (sic) my 16 doctor that I wasn’t taking that. Because I didn’t want to take the chance. So, you chose not to 17 take tamoxifen? No, I did. He talked to me and he said you should, you should just try it. So, I 18 haven’t experienced any of the side effects, so I’m good with that, so that’s it. 19 20 (Tavari) So, this was in June of 2013?... No, I was diagnosed May 15, 2013.1 had my lobectomy 21 June 6 ,1 started my radiation like the last week of August, and I started tamoxifen October 1st. 22 What is your marital status? I'm a widow. Are you currently working? No I’m retired. (Tavari) 23 From what profession? Happily retired. (Tavari) From what profession? I was a teacher for 24 almost 40 years, 40 years almost. What level teacher? All levels I taught from pre-k to adults at 25 various times in my career. And what’s the highest level of education that you completed? I have 26 a Masters plus third year. Is that like an ED.S? I was the highest, I tell everybody I was at the 27 highest pay levels before I got my doctorate. Got it. That’s what made me ask about the ED.S. I 28 know that’s usually a step in there too. 29 30 So, what has your cancer journey been like? My cancer journey has been much better than what I 31 thought it could be. It was a little scary at first because it was the unknown and it was like you 32 know, “no, this isn’t happening to me.” Uh-huh. I do the right things, I think eat right, I 33 exercise." I do all of those things. So, it was like why me? There was no history and I just didn’t 34 understand. But when I got the diagnoses... I got them on a Thursday. The results on Thursday 35 from the radiation we radio-radio radiologist and I remember I was driving my car and she said 36 do you want to talk now I’ve got some information and I did so I pulled over and I talked to her 37 and she told me. Well, and she said you should call your primary doctor and set up an 38 appointment so got, I said asked I’m not setting up an appointment. I am going to my primary 39 doctor. So. I went to my-my primary doctor. So by the time I had gotten to my primary, she had 40 gotten the information she was quite upset because she said that she likes to tell her patients and 41 because you never knew what the reaction is going to be. And she says are you okay and I said 42 I’m fine. I said I said that I don't know I said, but I would test when I did the test, and everything 43 and there was a potential. I prayed about it and I said I have peace about it. And I said it is 44 because of my faith in God that I'm able to accept this and and-and-and do whatever I need to do 45 to get me back on the right track you know. I said, so no I'm not falling all out on the floor. I’m 46 not screaming and hollering. I said, no! I said, nobody wants the C word, but it happens. And Running head: CANCER SOCIAL SUPPORT NARRATIVES 161
47 because it happens, you gotta deal with it. You know so I guess... like I said, the fear of the 48 unknown was what bothered me just just a little bit but I had great doctors, my family support is 49 wonderful, my neighbors were wonderful. So, initially, in the beginning all those people played a 50 part. When I ah, Let me go back a little bit, when I first got a diagnosis my two oldest daughters, 51 the one that lives here and, the next oldest, they were in Europe going to Beyonce. And so, I had 52 to sit on this information for like, this was a Friday, so three days. So that was probably, like the 53 toughest part, because I had had to have this by myself. I couldn’t share, I didn’t want to share it 54 with anyone until I shared it with them. And you didn’t want to share by email or do anything 55 else. You wanted to share it face to face? Oh, no.. .1 wanted them to enjoy the rest of that trip. 56 And that’s what I did, when I pick up one from the airport I told her then and you know so she 57 was a little bit in shock you know and I told the other one by phone because she lives in D.C. 58 And it was, it was it's okay once I got that out, you know. But then the one that’s here, she's she's 59 really she's my strong person. She says, okay, now what do we do? You know, what’s the next 60 steps? Where do we go from here, you know? So then you head on this round of doctors and and 61 and and and what your options are and everything and which, once guess I found out little bit 62 more about, because I did my little research. Once I found out it was stage zero, you know. It 63 didn’t feel quite so bad but nonetheless it was still cancer, whether it was zero or ten. And so, 64 umm, that was, kind of, you know, troublesome too. But once I started visiting my doctors and 65 they told me, you know (sic) the doctor, and they told me what was going to happen, then I was 66 okay. She gave me, during my visit, she gave me, she told me I have two choices it was a 67 mastectomy or it was going to be a lumpectomy. 68 So, she said with the mastectomy, it was going to be. I would do my part and the other side there 69 would be um, uh, what’s the person that does special surgeries? What is that person called? 70 Anyway there would be another doctor there. It would be a plastic surgeon that would, he would 71 suck the fat out of my gut...that’s exactly what she said to me and rebuild you there. And I said 72 oh my, okay. But she said you don’t have to go that far, it’s not in your lymph nodes, its very 73 contained. So, I elected to go with the lumpectomy. And I think that was the right decision for 74 me. I didn’t have to do any chemo, or anything like that, but I think it was the best decision for 75 me. But all along the way, through my treatments and everything, everybody was so so 76 compassionate. And that’s one thing that has drawn me to this, to here, and that is what has kept 77 me here. Is because of the compassion of the people that you meet. That are responsible for your 78 care, I mean everybody has been really fantastic that kind of blew my mind, you know, how 79 compassionate people can really be, you know. But it was comforting to know that I have 80 support system here. So once I started the, once I had the lumpectomy it was a few weeks and I 81 started coming here to classes and I have been coming ever since. You know, I’m hooked on the 82 classes and it because of the people, number one and then number two Kurt. I mean, you 83 couldn’t ask for a better person to to to hit a class then Kurt, because he pushes us, you know, 84 but he also knows. He also has the compassion for us. But he also knows some days may not be 85 so great now and he accepts that you know but he wants make sure we work to our potential and 86 I love that and so when I missed the classes or the people, I don’t see them, then you know, you 87 kind of become concerned about them. And one of the people that was really that really got me 88 into doing yoga was Dee. I mean the first day that went when I wasn’t so sure this was 89 something I wanted to do.. .(It’s getting hot in here). So she met me with her effervescent smile 90 and she was just all over the place, (I just took my thing off) and she was just so embracing and 91 just so loving, and her hair was like none, I don’t think she had any hair then. As she was just 92 celebrating “oh, I’m so glad to see you,” and I kept going back because of her. Because she was Running head: CANCER SOCIAL SUPPORT NARRATIVES 162
93 just that kind of person that kept pulling me in, you know? And umm...She used to make sure, 94 she would put my mat right next to hers. And we used to work-out and just really really good, 95 and so when she stopped, when she had to stop coming, I mean it just felt like 1 lost somebody. 96 You know. And when she actually left this earth, “ugh!,” you know. But, there have been others, 97 you know, who have been, who provided other things for me other things for me, you know, 98 other kinds of support, so I know that if I’m having a down day and I come here I know that 99 somebody is going to say something-something is going to happen and I'll be glad that I came. 100 And I’ll leave here feeling better. Whatever I was trying to have a pity-party by myself or not. 101 You know? That they would help me get through that and this is what I like most about this...this 102 is what I like about Cancer Wellness here is the support that survivors, family, caregivers all 103 have here and they can take advantage of, you know, um, so, it just does total body even 104 massages. Like just a few weeks ago I told Maude, I have a real problem with my neck and 105 shoulders and I got a head and neck massage and it was just great! You know? 106 107 And so I do those things. I take advantage of every possible thing that I can. And, uh, that’s what 108 keeps me going. I don't volunteer anywhere else I don’t do anything else, I just come here. And 109 that's that what takes care of that void. That if I work, not working or anything like that, plus I 110 travel a lot too. So, that helps, but my journey I can say has been a very surprising one but a very 111 fulfilling one and I just am so grateful, you know, that it’s positive for me. And I know, for 112 some others it’s not so great, but I admire the women who are going through right now, who are 113 having, you know difficulty and challenges and they’ll share it with you. And so it’s that 114 camaraderie. It’s a club, this is club exclusive club that you don't choose to be a part of but oh 115 well. You are there, so you just try to make the best of it. Um, what else? That’s all I can say. 116 Except, you know the fact its been my follow-up, I make sure I do follow-up with my doctors 117 and everything and so far so good. Now I have a mammogram scheduled for next week which is 118 the second one I’ve had, so when I looked at the calendar, I said “ew” and I got a little 119 apprehensive and I said, you know, uh this is the real first test, you know this has been a year, 120 you know, so I was but, I prayed about it. And I’m okay with it. You know, uh, it’s gonna be all 121 right, you know. I’m just going to go in there and deal with it and hope for the best. But, any 122 way, you provide a great service here. Oh, my goodness, it is just awesome! And, and, uh, 123 wherever you can help, you do or Sharon, you know. I miss seeing you a lot. But, You know, 124 seeing her anyway. But it’s always good to know that you can just pick up the phone and you 125 will return a call. Whatever it is that you might need so does the support here is just powerful. I 126 have other friends who had, you know cancer, and they had not had same experience that as far 127 as services resources and things like that take it you been diagnosed, have your surgery, and you 128 have your chemo, or your radiation or whatever an then “good-byes.” I was in the right place at 129 the right time. That’s how I look at it. I am right across the street and this is right here and even I 130 go down to the radiation department sometimes because they used to always tease me. They 131 would say, okay, what day are you going to walk over here? I’d say, I’m not walking over here, I 132 am going to drive. But sometimes I come in to say hello, you know, or maybe sometimes they 133 come to the water fountain and they will see us in class and they will wave and say hello, you 134 know, so it is just all around good. And I would recommend this Cancer Wellness to anybody. 135 And I am so sorry that people don’t take advantage of it because it’s good. It’s really great you 136 know. 137 138 Tavari: so it sounds like the things that have been most helpful to you, it sounds like where you Running head: CANCER SOCIAL SUPPORT NARRATIVES 163
139 were spiritually, so your relationship with God, and 2 daughters ... 140 141 Well, three, I have three. But my third daughter hasn’t been as, you know, she lives in Baltimore, 142 so she hasn’t been as involved. But the one in D.C came and stayed, not D.C, but Northern 143 Virginia, she came and stayed with me in the initial, when I had the surgery, she came and 144 stayed. And she came back and stayed several weekends. But the one here, sometimes I have to 145 remind her “I am still the mom; you’re not the mom.” You know, but she does a good job of 146 making sure I’m okay, and checking in on me, but giving me my space too. So, yeah, so yeah. 147 148 Tavari'. do you have a church community? 149 150 Yeah, oh yea, yeah, yeah I have a church community. My church is not too far from here. They 151 were really, uh, I guess I didn’t mention them, but they were of great support to me as well. They 152 didn't know me as well because I have only been here since 12, and, so it was only a year. But 153 they did offer the support, they did offer the prayers, they did offer the phone calls, the text 154 messages and all of that. You know, and umm, but I never missed church, during my whole time. 155 I never missed, I was always there, so I guess it was hard for anybody to believe, “really?” But I 156 always went, because I didn’t have that that tiredness that some people complain say they have. 157 You know, I rest, whenever I wanted to lay down, I did that. But I wasn’t per se like tired. I kept 158 my routine most of the time. So, I umm, I guess I didn’t act, I don’t know how you supposed to 159 act. But I know with me, I was not sick. I was not tired. I just knew that I had to modify my 160 schedule some as far as, you know, whenever I felt like I had to lie down I did that, but I was 161 doing that anyway. But, yeah, my church was very, very, very supportive, as much as they knew 162 about me. But it’s my own faith, you know, that that I know that kept me going. Because when 163 you, when you lose your husband at 58, you know, it takes a lot of faith to keep moving on, you 164 know, and not succumb to that, you know, and realize that life goes on. So I did. My husband 165 had MS. It’s a terrible disease. So, you know, once he, when he died, I realized that, okay, I had 166 all of this time to myself. And I was scared. I was his care. I was the care-give. I was his main 167 caregiver, but then I had a full-time nurse that took care of him all the time. But, umm, I realized 168 that I had to go ahead and continue to live my life, you know. So, when I moved here and I was 169 diagnosed, I said “okay, another hiccup.” You know, okay, I’ll get through this one too, you 170 know. So, that’s how I kind of take, that’s how I kind of live my life. Ah, when things go wrong 171 or they don’t go as planned, you know, I say “okay, that’s just another bump in the road.” You 172 get over that and you move on, you don't stay there. Yeah, I don’t tell anybody that I don’t have 173 pity parties sometimes, but I don’t stay there. You know, I and um, I have a friend and I tell him 174 all of the time, I say and you know, you call me everyday, during this time, and he lives in 175 California, and I say “you have no idea how many times you pulled me back from the ledge.” I 176 said, just by something you said, you know, hey okay, and sometimes you just need that little 177 jolt. Sometimes. 178 179 But, umm, yep, if I didn’t have my relationship I guess my relationship with Jesus Christ it 180 would have been a lot harder for me. You know, I know people deal with it and they don’t have 181 that but, for me personally, I think it would have been a lot harder. U-huh, yeah, yeah, because 182 I’m very, I’m very optimistic about the future. Even though, like I said, I have a mammogram 183 next week and its kind of bothering me. But, as far as the future, I am very optimistic. I’m 184 optimistic for a long life, so. Running head: CANCER SOCIAL SUPPORT NARRATIVES 164
185 So your relationship with Jesus Christ, your daughters,.. And then I have other family extended 186 family don't live here who were very supportive as well, you know, who, they couldn’t be 187 physically, but they were on phone to me. You know, they were checking in, even if they just 188 called me, they were checking in on me. I come from, my husband's family were very connected. 189 We stay connected. They call me little sis, you know, I’m the youngest one. Its just like, its never 190 been that in-law kind of thing. It’s always been a sisterhood. So, you know, when I moved here 191 they were really sad, you know, but they realized why I was doing it, you know. And so, during 192 the, when I told them about cancer, they were kind of in shock. But I had another sister-in-law 193 who had breast cancer. She had double mastectomy, so she, when I told her she just kind of like, 194 she just said, whatever you need baby, I can talk to you about it because I been there done 195 that...you know. So hat was good. But I had immediate family and extended family support. And 196 umm, of course here, the doctors that I had, and the Cancer Wellness center. 197 198 Tavarv. How are these people supportive to you? Is it supportive words? Because it sounds like 199 you have a friend in California...you have.. 200 201 My friend in California has been supportive words. That’s what, I can count on him for a laugh. 202 He said, you need to get a gut laugh. So I can count on him for a gut laugh. I talk to hi m 203 everyday, about something, you know. And we still talk, we still talk everyday. Not so much 204 about... just life in general. We don’t talk about my journey or anything like that. We just talk 205 about life. Uh, but the other people in my life is provided support verbally by mouth, by their 206 prayers, umm by umm, by neighbors, you know, people in the church too. Making sure I have 207 food. They may bring me a meal or something like that or just stop by for a visit. You know just 208 to chat. You know, not to talk about anything, you know, anything particular. Defiantly not to 209 talk about cancer, but they talk about lots of other things, you know. 210 211 Tavari\ so it’s really that connection though? 212 213 Yeah, yeah, yeah, so. That’s how I’ve come through it. Umm, Something else I started doing too 214 that was therapeutic to me. I have beautiful flowers, irises in the back of my house. And they are 215 just beautiful. I love flowers anybody that knows me knows I love cut flowers. My husband used 216 to just, I get flowers once a week. I used to get once a week flowers. And he used to bring them 217 to my school and they would be on the counter. And everybody would say. Oh we know who 218 those are for, you know. Because I love flowers, but anyway, I started a little herb garden this 219 year. So planted my little herbs. I had thyme, I had parsley, I had mint, and basil. So I was very 220 proud that. And that is something that I have never done before, but just felt like this was 221 something I wanted to do. And it’s because of here. You now, I said, I can grow my own little 222 herbs. And it was nice. It was very, very, very good for me. It was very, very, very therapeutic 223 for me. And umm, the knitting, that’s something else that I didn’t know how to do. And that has 224 been very therapeutic for me. There Fridays, we don’t do a thing except talk. And that’s what’s 225 need right then, you know. But I can I can knit some thing. Uh, at any given time. I travel with a 226 bag now. Knitting, because I never know when I might have a spare moment, you know. So I 227 like doing that, you know. I like seeing the finished product. And there is something else I’m 228 going to do too. I’m gonna do an art class. Because of the art class we had out here one time, and 229 I painted a canvass. And it’s hanging in the house. And so, I’m gonna do that, you know, I 230 haven’t done that yet., but I am going to do that, you know. Running head: CANCER SOCIAL SUPPORT NARRATIVES 165
231 232 Tavari: It sounds like you have been inspired here. 233 234 I have been inspired, a lot. And I didn't realize I had, I think I might have a little artistic ability, 235 you know. So I'm looking forward to creating something else and doing this class, you know. 236 One of the, one of the women in the class, Suzanne, she's artist and umm, I talked to her about 237 that maybe there is a hidden talent somewhere, you know, maybe I need to pursue that, you 238 know. So it has brought out things like that. You know, new things to do, you know. Because 239 when you’re retired you really have to maintain an active lifestyle, I think, or else you’ll get you 240 know, you won’t live long. And you just kind of waste away, but I’m not about that. You know, 241 so when I try these new things, which I’ve done here. That has been giving me inspiration. To 242 you know say, oh wow, I can do that. I can make that. I can do this, you know. And, if I don’t 243 come to a class for awhile, somebody’s going to call me and say, where are you? Like he craft 244 class. I haven’t been to the craft class, but they call me every time they have one. And I say, I’m 245 coming back, but not in the summertime. But, so you get that kind of inspiration, yes. I made a 246 little clay pot last year. Ugliest thing you’d ever want to see, but I made it. You know, so, those 247 kind of things. 248 249 Tavari: well, you certainly sound open. Even in the short period of time you’ve been living here. 250 You’re open to your neighbors. You’re open to your church community. You’re open to coming 251 here and making new friends. You’re open to trying new things. 252 253 Uh-huh, yeah, it’s a whole new world. Like I said, I came here and I closed on my house May 254 29th or something like that of 2012, and a year later I was diagnosed with cancer. Eww, what is 255 this all about, you know. So, umm, but I just think, you know, okay, I said okay, when I was 256 questioning why, but then I realized had I stayed in New Jersey, where I was, you know, I wasn’t 257 very close, you needed a car to get to where I lived, you know. I had a neighborhood, you know, 258 but family was in Philadelphia. I was in Columbus, New Jersey, so that was a 60-mile drive. No, 259 40 mile drive, but I was still wasn't very close. So I say, you know, what if I had been there. 260 Then my children would have uprooted and come there with me. You know, they would have 261 done this, you know taken leaves of absence from their jobs. But I said, this way, this is so much 262 convenience. I just said trimming. Timing is everything and I think the timing with tis, if it had 263 to be a time. This time was perfect. Because I did have my daughter who is very close by. You 264 know, so. 265 Tavari: Is that your youngest daughter who live here? 266 D.A: no my oldest 267 Tavari: She looks so young, I was thinking she was the youngest. 268 D.A: 41 269 Tavari: Okay. Other than trying to mother you what does she do to support you? 270 271 Um, like, for instance, if I say I’m going out, well what time? Where are you going and who are 272 you going with? And, and, and, and are you driving or are you not driving? Ah, things like that. 273 Where are you traveling to? You know, where? And I say, hmm, wouldn’t you like to know? I 274 say, I always tell her where I’m going, but I don’t need your permission, I have to remind her, I 275 do not need your permission. I’m grown, you know, but it’s just that umm, she has, she’s a lot 276 like her father. I mean, I see her father in her all the time. And I tell her its just like your daddy, Running head: CANCER SOCIAL SUPPORT NARRATIVES 166
277 you know, but in a good way. You know in a good way she's a take charge leader type person, so 278 umm that’s what I mean. She needs to know. She feels she needs to know every step I make. 279 And that’s okay, you know. But sometimes, I just ignore her, because then make the decision and 280 go on and do it, you know, uh. Yeah, so. 281 282 Tavari : so, you lost your husband in 2011 or 2012? 283 284 Uh, 2005. It will be 9 years this, Christmas. He died on Christmas Day. Yeah, it’s a bummer. 285 And we, we still have not figured out how to do Christmas yet. After all these years. The first 286 year we went to Disney World. The next year, I think we went on a cruise. We did something as 287 a family together. And each one of us, you know, deals with it in our own way, you know. You 288 know, Christmas, We realized Christmas, you know Christmas will never be the same for us. It’s 289 different. You know, we do do things differently now, but we celebrate, and all that, but, I don’t 290 know its just something. Like, we were planning this year to take the Disney cruise, umm, but 291 we’re not going to do it now because the one in Washington, the one in Alexandria Virginia's 292 expecting twins. So, she’s expecting twins in January, so I’m going there in November, the 293 second week in November for her shower and then I’m going back in December and I’m going 294 to stay. So.. I’m just going to stay until...she has the babies. 295 296 Tavari: I am wondering until when? 297 298 Until, hmm, January, I prefer to come back home, but go back January/February. Something like 299 that. The cold months and that is just crazy, because it gets cold there and I moved away from 300 the cold, but that’s my daughter. Those will be my grandchildren. So. 301 302 Tavari : Have you considered dating since 2005? 303 304 Yes, I have. I waited until five years had past and there's nothing magical about five, but I 305 wanted to make sure that when I started dating someone that I did not bring baggage from my 306 relationship. That I wasn’t looking for the same kind f man that I was married to. Because I felt it 307 wasn’t fair, you know, if I met someone and they had something different to offer, and I'm still 308 thinking about the past. I just want to make sure that I was done with that. So once I did that, 309 umm, it was five years and I started dating. You know, referral. And then I tried online dating. 310 And, umm, I met some guys and some were okay, but the big thing I found with online dating, I 311 just haven’t found the right person, is that a lot of them have a hidden agenda and they are 312 looking for someone to take care of them. And I’m not taking care of anybody. I can take care of 313 me. I don’t need someone to come in and take care of me. But I would like to have maybe a 314 constant companion, or something like that. And I would probably entertain marriage to the right 315 guy again, but so far I haven't met that guy yet, and uh, he’s going to have to bring something to 316 the table, you know. So, right now, I am content embracing my singleness. Uh, I can do just 317 about whatever I want to do. I can go wherever I want to go. And, but clothes, which is a passion 318 of mine. So, umm, yes I have dated and I’ve dated some guys from here. Umm, but, no, I have 319 no steady man in my life. Except for the guy in California and he, he’s safe, because he’s in 320 California. I’m here, you know. But he’s been a good friend. We went to Thailand together. And 321 I think next year, I wanna go to Dubai. So, I might go to Dubai with him. 322 Running head: CANCER SOCIAL SUPPORT NARRATIVES 167
323 Tavari: And how long have you guys been friends? 324 Ann: three years 325 Tavari: How did you meet him? 326 327 He was at umm, he’s a cousin of my college roommate. I was at my college roommate’s 328 retirement dinner, and umm, he was there. In fact, we sat at the same table. We didn’t now each 329 other. You know, we started up a conversation. And umm, you know, we just kept it going. He is 330 a retired Delta pilot, (sic) Used to be, not based here, but he used to fly out of (sic) a lot of times. 331 And so we just kept it going, you know, nothing, and its never anything romantic. It’s always 332 been like platonic, but just good. You know just have a good male friend or a good female 333 friend. You know, it would, you’re not trying to go to bed with them or anything like that. Yeah, 334 it has been good. But, umm, I don’t know. Maybe the right man will come around. Maybe not. 335 Like I said, I embrace my singleness. 336 337 Tavari: so you have a your church community, Jesus Christ, your daughters, your neighbors, a 338 great extended family and at least one friend in California? 339 340 At least one friend, yeah, in fact; I’ll see him in 2 weeks. I’m going to California on the 8th, no, 341 what’s that Monday? Whatever that Monday is, I’m going to California and coming back on the 342 12th. It’s just a few days. I tag along with my daughter a lot. She works for; in Chick-Fil-A in 343 operations. So sometimes, if she has an extended trip, you know, I’ll go with her. The only thing 344 I have to do is get there. So I’ll do that, so that’s what I’m doing. I am going to California to, get 345 there, I got, I’m going to get and be there for a few days, you know, but its California. You 346 know, so. 347 348 Tavari: Is there anyone of anything from your support system that has been helpful? Is there 349 anyone or anything that we might be missing that you haven’t talked about? 350 351 Umm, I guess, when different ones or different friends stay that I’m there for you. My, I call 352 them my ride or die friends have been there for me. And they don’t necessarily talk about; we 353 don’t necessarily talk this journey too much unless I want to. It’s about lots of other things, you 354 know, and I have one friend who made sure I was always, that I kept active. I guess, really, I 355 can’t say one thing over another. Because everybody brought something, every part of this whole 356 network has brought something different. 357 358 Tavari: do you think that’s been helpful? The diversity of the network? That you have a big 359 enough network that everybody brings something different? 360 361 Yes, it is it is because I do have a very diverse network and I have it as far as; a diverse network, 362 of diverse people, of diverse races, as well. You know, umm, so I can also, I have always been a 363 people person, so I have I have friends, then I have friends, and then I have relationships, and I 364 have acquaintances and they come in all colors, you know, and I can-1 can have a conversation 365 with with the ditch digger and it is okay and I could have one with the corporate boss and it’s I 366 can relate to those people, you know, but I guess because I do have a wide net to draw from that 367 has been very very helpful. But then you also, you have, in this wide net I do have a core of 368 people, who I hold close to me and they hold me close to them. And uh, and that’s about maybe Running head: CANCER SOCIAL SUPPORT NARRATIVES 168
369 4 or 5 people, you know, I know I can say anything, I know I can do anything, and they are 370 going to be there for me, you know, they are gonna be there for me. And this is more or less not 371 family, but friends, who have shown themselves a friend, because when I needed them the most, 372 they were there, you know, the good, the bad, the ugly. And so, I know that they are real and 373 they tell me the truth. You know, “you don’t need to wear that,” that looks...“get rid of that hair,” 374 things like that. So, those kind of people, have, I guess are, who are friends, have been there for 375 me, even if they just come over and not even talk. Just sit, {Tavari: just be there physically). 376 Yeah, so that kind of stuff has been really good. But I know some people, you know, probably 377 would think they don’t need all these people, but I did. I need all those people, I needed all those 378 areas because it covers everything, you know. If I had a medical question, I’ll umm, you know I 379 have medical people, I’ll talk to my doctor, you know, any time. You know, whatever the need 380 is, I have someone who can fill it. 381 382 My-my college roommate, who, we’ve known each other for 49 years, she lives in Stone 383 Mountain. (36:38) When I told her about my diagnosis, she was hell 384 bent on me (sic) coming here. There’s a doctor, I think, I can’t even remember her name, but she 385 is an oncologist there; a surgical oncologist. And she said you have to go to her. You know, and I 386 said why? And she said because she's the best. And I said you know what? Let me just try 387 locally. I said if it doesn't workout, if I’m not happy, I can get a second opinion, I can get a third, 388 I can do all of that, you know. So, when I told her I had decided to use (sic) this hospital, she said 389 well okay, all right then. And so, I told another friend of mine who lives in Charleston, South 390 Carolina who’s son is a radiologist, so when he heard that I was having radiation and I was going 391 through all of this, he said okay send me the name of the doctor. And I said, okay. So he called 392 me back and said Aunt Dora, her credentials are fine. You’ll be okay. You know, so I had people 393 doing all kinds of stuff like that. So, its just, all a bit, you know, but like I said I think I needed a 394 wide net like that. Some people don’t. 395 396 Tavari: did you ever find that support overwhelming or intrusive? 397 398 Uh-uh, no, I never had to tell anybody to back off. I guess because I like people and no one ever 399 felt like they was overbearing, you know, it was overwhelmingly or anything like that. I didn’t 400 experience that, but I know how that can be, you know, but the people that surround myself with; 401 I think they kind of knew that, you know okay, how much to push and when to back off. You 402 know, so I didn't really have, I really wasn’t overwhelmed at all. I was thankful, for one thing. I 403 was grateful. That I did have this, you know, that I did have people, who cared, and you know, 404 were there for me. 405 406 Tavari: But do you think that you have good boundaries in place, so even if it's your daughter 407 who want do to too much? Are you comfortable drawing the line. 408 409 Uh-huh, the line is in the sand right here and don’t step over it. You know, I have enough in me, 410 in my make-up, that I can tell you that and people that I know I can say that to; okay, you are 411 overstepping the limits. And like I tell my daughter, I say oaky, its time for me to go home now. 412 You know, or its time for you to go home now. And you know what, she accepts it and she goes 413 or I go or whatever. And I said umm, when I first moved here she said you said, mom you don’t 414 have to buy a home right away, you don’t have to move right away, you can stay with us. She Running head: CANCER SOCIAL SUPPORT NARRATIVES 169
415 said, we’ve got plenty of room, and they do. She said you can stay with us a week, month, six 416 months. And I said, oh, hell no! I said I need to get my own space, you know. Because we don't 417 live that far, she lives in (sic) the unincorporated portion of the county, and I live, you know 418 here. So, its like only 12 minutes apart, but at least we’re apart. You know, because we butt 419 heads sometimes, you know, and umm, it’s good to have that separation area. 420 421 Tavari: do you feel like you’ve always had a team in place? Or did you end up putting a team in 422 place once you got diagnosed? 423 424 It was a fragmented team, but when I got diagnosed, I kind of pulled it all together. Like, I knew 425 there were people out there. I knew that I had people that could call on for different things. I 426 knew that, you know, but it wasn't, any kind, it wasn’t, it was fragmented, you know, but when I, 427 I knew that when they say, the rubber meets the road; I knew I needed to embrace them more. 428 Because, I need them and they could be of help to me, uh so, umm definitely this has has brought 429 a closeness in different relationships that would maybe not have been there. But its just like, it 430 was there, but like I said, fragmented. Over here somewhere, over there somewhere, but this 431 pulled it all together. You know, and, that helped a lot. 432 433 Tavari-. It seems like to you knew who you could o to for certain tasks and who you could go to 434 for emotional support. 435 436 Oh, yeah. When the time came I could rely on those resources and they were resources for me. 437 Umm, and I knew who they were. It’s like umm, you know you don’t have to talk to somebody 438 everyday, or every week, or every month, you know, umm, have friends who we used to talk 439 maybe once a year. But you know what, when we talked we picked up and it was like we never 440 missed a beat, you know, because that's just how the relationship is, you know. So anyway, so I 441 had some of those kind of people, but when it when I told them, when I shared with my network 442 of folk, umm, they embrace me, you know and they provided what I needed and still do. We all 443 we are closer now. I went to a family reunion this past weekend, umm my family, umm in North 444 Carolina and you talk about; it was one I think I’ve ever gone to for that family. Because it was it 445 was just a lot of love, because we, our family had been challenged with a few deaths last year, 446 just a lot of different things, so it was a lot of love, a lot of caring, a lot of sharing in that room. 447 There were about 150 of us and umm, everybody was kind of like embracing one another. You 448 know, because you looked at the person to the left and to the right, you know, and that person 449 may not be here next year. So, um, that was I came away from that feeling very-very, I guess 450 close to my family, you know and I wasn't, they, that part of my family were not involved in this 451 whole, except they may pray for me, but they didn’t call or touch base, or anything like that, you 452 know, but they knew. But, after this weekend, I got a renewed, you know, I got a new attitude 453 about my family. Maybe they are caring, they do, you know, we do love each other, you know, 454 its just that I guess, we had a disconnect for years, because I moved away and a lot of them 455 moved away, so we sometimes I’d come to the family reunion and sometimes I didn’t, so you 456 know it was kind of a disconnect. But, I felt very connected this weekend. And after coming 457 back, yeah, so, anyway. I think this whole experience if nothing else, its like I said, first of all I 458 value life, I value good health, and I value friendship, I value love, the I ju st, my Christian 459 relationship has been strengthened as well. So, you know, so I'm grateful these things. So when I 460 look at the upside of everything, I can say that this experience has brought me closer to a lot of Running head: CANCER SOCIAL SUPPORT NARRATIVES 170
461 things and has, gave, given me a different perspective on a lot of things. Really on life and how 462 fragile it is. I mean, you know, who would’ve, I wouldn’t have thought that I would have cancer. 463 No, you don’t even think that way, you know, but then when it hits home, you know, the thing is 464 you see, yah I see you know. And uh, so you just look at things a little bit differently. You want 465 to take care of this body, you know, a lot better. And Like I said, I always thought I was taking 466 care of mine, but obviously I wasn’t. Whatever, it has umm, really-really strengthened me as a 467 person. I think I’m stronger, because of what I went through. And when I hear of someone new 468 that’s just starting to go through this, I try to offer words of encouragement to them, you know. 469 There have been ladies out here who just started chemo or just started radiation, or what ever and 470 I try to give them something, some thing that will help them that day. Even if the don’t carry it 471 any further, but at least a kind and encouraging word. You know, and so that has made me, the 472 whole things has made me a stronger person. 473 474 Tavari: What doo you usually say to them? 475 476 Umm, first of all I tell them I’m praying for you. Then I tell them something like, you know, I 477 went through that, so I understand, you know, what you going through and I understand the 478 emotions, I understand the challenges, I understand what you may be thinking. Especially if it 479 breast cancer, but if its not breast cancer, I may not say I understand. As well, or if the person has 480 gone through chemotherapy, I don’t try to explain, I don’t try to understand something I haven't 481 been through. I can’t talk about that, but I can talk about what I've gone through and I can share 482 with them, you know how, you know what going through this experience has done for me and I 483 can remember, umm, I don’t know if she’s here anymore. But she was so concerned because she 484 had lost all her hair, I said well the good thing about this, if you can loo at it as a good thing, and 485 she laughed, I said you can get such nice hair wraps. I said, they’re beautiful. I said get some 486 nice earrings. That’s what I did with Dee. I said Dee, just get you some chunky earrings, who 487 cares about your head, just get some chunky earrings, and she did that. She went and got some 488 n ice earrings, but I’ll tell them that that if you need me for anything, I give them my number. 489 You know, you can call me anytime. And my phone number is not off limits. I tell people, I say, 490 you can call me anytime. I said, I’m retired, so if you wake me up, I can go back to sleep. Or I’ll 491 sleep the next day or whatever. Umm, Like I said I try to tell them, I know its not easy, I know 492 its not easy, but you will get through this. It will, it will, you will get through it. Now how you 493 get through is maybe different them how I got through, but you will get through it. And you have 494 people who love you and care about you and I am one of those people. I care about you. I’m, 495 what you’re going through now, so that’s why I tell them they can call me. You know, so those 496 are the kinds of things I try to say to them. You know, that its not going to last forever. You are 497 going to get through this thing, you know. 498 499 Tavari: so it does sound like it has been helpful to you to stay busy and to laugh. Those people 500 who were able to help you do those things were extremely helpful. 501 502 It is, it is, I laugh everyday, because not only does laughter keep you young, but it extends your 503 life. So I make sure I laugh something, I mean gut laugh too, you know. Deep down in the gut 504 and I do that and umm I try to keep a positive attitude, you know, which goes a long way. 505 Attitude is just a part of the whole, makes the whole process, you know, it can define the whole 506 process, your attitude. And if you’ve got a great attitude then you’re going to have great success Running head: CANCER SOCIAL SUPPORT NARRATIVES 171
507 but if your attitude it stinks, than that's going to effect your treatments and how you recover; if 508 you recover. You know those kinds of things, so you just kind of to keep it on a, look at the glass 509 half full. Instead of half empty, you know, and that’s kind of like my philosophy. You know, no 510 matter what’s thrown at me. When the world throws me lemons, I throw them back and the 511 demand chocolate. So, umm, it’s, I talk about attitude a lot because I think attitude is so very 512 important. How you approach things and your (sic) attitude toward, so this is happening to me, 513 you know. Alright, you may feel bad for a little while, but don’t stay there. You know, change 514 the attitude, you know. Whether it’s reading something, whether is going to, you know, whatever 515 what ever you need to do. And, and, that’s something else I kind of used to do too. If I needed 516 something, if I find myself in a place, and depression was one of those things they had warned 517 you about, if I thought I was getting a little depressed, I would get up and do something. I would 518 get up and go to the movies, go shopping, I’ve bought things and returned everything I’ve 519 bought, but eh, I did it. What ever I need to do to get me from point A to point B. That’s, that, 520 that’s what I did too. My daughter said, you’re the take back queen. But, you know, it’s, it 521 wasn’t, it hasn’t been a long cycle of that. I don’t normally do that, but that’s what I needed then. 522 That’s what I did, you know, so, anyway. 523 524 Tavari: Is there anything else I need to know in order to understand your experience? 525 526 Umm, I was going to say something about milestones, what was my thought about that? Umm, I 527 think is important that people know that when they have been diagnose that sometimes you, they 528 say umm, you take one day at a time, sometimes you can’t do that. Something you have to take 529 one hour at a time, sometimes you have to take one minute at a time, you know, it's is no magical 530 thing, you know, but you have to do whatever you need to do to get through what you’re going 531 through. That’s what I say, you know, whatever it takes. You know there's no right or wrong, it’s 532 just whatever it takes for you; and umm, so I think we covered everything. Every thing during 533 my experience. I’m gonna continue doing what I'm doing, you know. I’m going to continue 534 being apart of here, you know. Then when I feel like I what do something else, I may just 535 volunteer here, but I'm, right now I’m just going to o the classes, whatever activities I can do 536 here and I did add swimming, because that’s something I like to do, so added that outside of this. 537 You know, but its all about keeping this body together, you know, so. Running head: CANCER SOCIAL SUPPORT NARRATIVES 172
APPENDIX G
PARTICIPANT 2 FULL TRANSCRIPTION Running head: CANCER SOCIAL SUPPORT NARRATIVES 173
1 Tavari: What do you think has ben most helpful throughout this process? 2 3 I think I have had cutting edge technology, from MD Anderson, and uh, I've got a lot of 4 confidence in my physician out there. He has an MD/PhD and I feel like I get good care from 5 my doctor. 6 7 Tavari: Are you still in active treatment? 8 9 Yes, I’m in a clinical trial. I will be in treatment indefinitely. They, umm, the cyromalfibrosis 10 that I have is stable, but its not in remission. If you quit taking the medications; I take 10 11 chemo pills a day of one type of chemo called Roxilimidid., which is something they just, 12 they are working on now. They just came out with and I take one Revumed a day for 21 13 days and have to go off of it for a week. And, umm, my understanding is if you go off the 14 drugs even for a week or so, uh, it starts coming back. So, uh, on one hand I think and I’m 15 not a doctor or a physician, but it does seem to be a very complicated disease, but it also 16 looks like-like its something that because of the information they’ve learned on the human 17 genome over the last few years, they have been able to, in the last five years they have been 18 able to make big strides in the disease. So, I've been very fortunate in having good care. 19 20 Tavari: so, what’s keeping you going? What's keeping your spirits lifted? 21 22 Uh, that's a good question, umm, I don't know, I just, when they told me I had cancer I didn’t 23 feel like I was ready to die. And, umm, uh, I felt like the doctors here at Piedmont were very 24 honest. They did not have a treatment for it. And they told me they didn’t. They said they 25 could give me Hydroxiria, which would help with some of the symptoms, but the standard 26 time for the disease was five years, and uh, I probably had a year and a half, but they 27 weren’t very sure. And, um, I umm, I don’t know, you know, I've got faith in God and I really 28 just, uh, my family, I really don't feel like I'm ready to leave them yet. 29 30 Tavari: How have they been throughout this process? 31 32 They've been great. They have been really good. Wife especially, she has been very-very 33 supportive on the thing. And, umm, I can't say too much good about what she has done. 34 Umm, as I’m sure you know, there are a number of marriages that, when one person, uh, 35 gets cancer or some kind of disease, it kind of falls apart. But, my wife has been very 36 supportive. She couldn't be any better. And umm, you know, actually I, sounds sort of 37 morose, I guess or macabre, but I've also enjoyed life more because I don't worry about 38 things in the future anymore. I was talking to a friend the other day and he was talking 39 about all the problems people had, he had with his mother in nursing home, how he had 40 spent $5,000 per month, and they went through all their savings and everything, and you 41 know he was talking about the nursing home thing with people with Alzheimer's, and I 42 said, you know, that's one thing I guess I don't have to worry about. But I really, I don't 43 worry about the future that much. Maybe that's a good thing that came out of it. 44 Tavari: so, for you, is it really about living fro day to day, or week to week, just doing what 45 you need to do, just living today, and taking your medication today? 46 Running head: CANCER SOCIAL SUPPORT NARRATIVES 174
47 Uh-huh, and that’s really the way you're supposed to live your life whether you are 20, or 48 30 or 40.1 mean if you get sick considering the way it feel, they don't toil or spend their toil, 49 but solving all this pity wise raising all those, but you know, so its living one day at time and 50 just enjoy life. 51 52 Tavari: at any point when you were first diagnosed, where you and your wife afraid, were 53 you...? 54 55 The only thing that bothered me was I didn't w ant to loose my wife. Uh, because I do have a 56 business, and umm, I was very fortunate in that I had wrapped up a lot of the business 57 when I was diagnosed and I was sort of between projects. But, umm, I really would have 58 felt very-very, umm bad leaving her with all this stuff because its stuff that I know how to 59 do, and its kind of complicated, and it would have been kind of dropped in her lap and I 60 have also seen a lot of people who have dies prematurely or umm, umm, unexpectedly and 61 they have had a business and their wife just, just totally swamped and its not a good thing. I 62 just didn’t feel it was, I just didn't want to leave my wife with all this going on. 63 64 Tavari: Do you all have children? 65 66 Yes, we have four children and we have six grandchildren. 67 68 Tavari: do they live close by? 69 70 Uh, ones a missionary that live in Africa (Tavari: what part?) Uganda. (Tavari: I love 71 Uganda.) Oh do, you? She does too. To be honest with you, I don't know why, but she does 72 too. (Tavari: It's a beautiful country). My wife's been there, she says it's the same way. 73 (Tavari: is she in Kampala or Entebbe?) She's out in the woods, she’s out in a small, she 74 started an orphanage when she was there with a college project. There's this old man way 75 out there, they didn't even have electricity or anything, they didn't even have a well. They 76 had to walk to a creek to get water. There was an old man there, she thought he was in his 77 70s, but she really couldn’t, she did know exactly how old he was. And uh, he was basically 78 going into Kampala and places, and he was begging fro rice because there were so many 79 children there that, uh, their parents had abandoned them or they were just orphans. She 80 showed us pictures of where he would cook the rice and what not. The building, the room, 81 half the roof was gone in this hut that he was using, and uh, she started and orphanage 82 there and now they feed 350 kids a day and they’ve got four teachers there. And they have 83 built four or five, they have built a dormitory for the girls, a dormitory for the boys, uh, 84 they've got a, they put a well in, uh they’ve uh, got uh, like I said they've feed 350 people 85 and they've got a school there. My wife went over there this summer and taught in the 86 school. And, uh, and she says, and brought back films and everything and I was really 87 impressed with the kids. They give them a little t-shirt, and shorts and a dress for the girls. 88 That is like their little uniform and they think its great. You know, they don't have anything, 89 but they’re much more disciplined and um, I think resourceful than a lot of kids here. My 90 wife said she would walk in the room and the teach would do this, and everybody stands up 91 and says "welcome to the African soup school, grade 4, you are most welcome." And then 92 they sit down, and uh, she said, that's why my daughter's over there. She just loves them. Running head: CANCER SOCIAL SUPPORT NARRATIVES 175
93 And they love her, and, uh, she’s uh, she does that. She lives in Africa and uh, my other 94 daughter is in real-estate. She lives in Atlanta. My other son is with a computer company. 95 He does software work. He lives in London with two kids, but he's moving back to New 96 York. My other son is in real estate here (sic). He's got 4 kids. That's what they do. 97 98 Tavari: so, how have they been through your process? 99 100 They have been just-just extremely supportive of, especially when I had problems with the 101 insurance company, the son, he was with SAP, which is a computer company, he and my 102 daughter who is in real-estate here, um, they were writing letter, had people sending stuff 103 to my insurance company and that’s another story, but they couldn't have been more 104 supportive. I mean, they were ready to file suit and everything against these people. 105 106 Tavari: Maude mentioned that you were doing some advocacy work of your own. It sounds 107 like you were really navigating the ship. 108 109 Yeah, you mean with the insurance (Tavari: I don't know if it was with the insurance, I 110 thought it was the physicians here to be honest with you). Oh yeah, yeah, I, I’ve, I do, umm, 111 a few things, but she's sort of a good PR person. 112 113 Tavari: How about your church community? 114 115 Very good. They've been very supportive. Umm, they, uh, Sunday school class I’m in, 116 they're, they couldn't be any nicer, any better. They, uh, I don't know what all they're 117 supposed to do, they haven’t done, but they couldn't be any better help. They umm, the 118 class I’m in, umm, we've had three guys now, get cancer, so I guess once you get past 60 its 119 sort of a part of life. And uh, its all kind of help to pull everybody through it. It is a bad, I 120 man it's a horrible diagnosis to get. It really is, when the doctor tells you that, its just, its-its, 121 you know like dropping a bowling ball on your head. 122 123 Tavari: That's what I'm curious about, how do you recover from that bowling ball hitting 124 your head? 125 126 I don't know, I mean when he told me, I knew I had a good doctor. But there's (sic) a doctor 127 over here at (sic) the hospital, but he umm, I had a lump in my side and it was about, I'd say 128 it was about the size of a small softball or something like that. Then I had a little lump in my 129 liver. And uh, I didn't know what it was, and thought it would go away, and um, anyway, we 130 um, you know, went over there. I decided to wait. I had an August physical. And, uh, you 131 know, I had the lump for a while, and um, anyway, I went over there and he felt it. He 132 grunted and everything and had me do a blood test. Then he called me at 8:00 in the 133 morning the next day and said come in, you know like now. So, I came in and he started 134 crying. He said I think you've got CLL or CLM, or something like that. And uh, I just started 135 laughing. And, you know, he said, I'm glad someone thinks this is funny. I said, you know 136 you're all down about this, but I just, and I did feel terrible, I have to admit that I really felt 137 fatigued. I mean, my wife said I looked sick, everybody that tells me that I look sick, I looked 138 pale, I've got, what is it called hen you are pale and you are anemic? But umm, (Tavari: like Running head: CANCER SOCIAL SUPPORT NARRATIVES 176
139 jaundice?) Sort of like that, but uh, you know he gave me, told me to come see the guy over 140 here. I told him, 1 said, I just don't think this is going to do me in. I mean, I just felt like I was 141 going to pull through it somehow or another. And um, went home and told my wife and she 142 got all upset. And um, I don't know, I just had a feeling like you know, we're going to get 143 through it some way. 144 145 Tavari : Are you usually like that when it comes to negative information? Do you think... 146 jack: what do you mean? Like what? 147 Tavari: Like if something, I'm think about other things that may have happened in your life 148 that were, maybe a set back for you. Do you find that you don't wallow in it? You kind of 149 figure, you see the brighter side of it, you see the glass as half full? 150 151 I don't know. It would be better to ask someone that knows me about that. I always feel like 152 things are going to work-out. I mean, I feel that way, but umm, I do have a bit of a temper 153 and I really did get upset with my insurance company. We had a real go-around. And I got 154 upset with Emory too. Probably shouldn’t put that on the tape, but uh, I really, but you're 155 going to Mercer, you're not going to Emory. I, uh, went here and I got a real good doctor 156 here. Dr. Feinstein, and he was just most encouraging. Or not encouraging, I don’t know 157 how to say it. He was honest, but he was very sympathetic. I mean, or empathetic would be 158 a better word. And he did some more tests and he said, its not CLL or CLM. Of course, here 159 you've got to send everything off. And they said, the radiologist came back and said its 160 primary myelofibrosis and he said we don't really have a cure for that, but uh, they're doing 161 trials around the country and uh, he uh, sent me to Emory because that is the closest place. 162 Emory, what, I don’t know how familiar or if this happens all the time, but no body can take 163 information from the other guy. Everybody's got to get their own test, and biopsies, and 164 everything. So Emory had to go through all this stuff again and confirm what we had over 165 here at Piedmont. And the doctor at Emory called me up at 7:00 at night at home and said I 166 do have primary myelofibrosis They don't have anything for it now, he said, but they are 167 possibly doing some clinical trials in a year or so. And, uh, he would like me to, he said we 168 need some good candidates for our clinical trials and I'd like for you to participate for our 169 clinical trials. 1 said, when exactly are you going to have your clinical trials starting? He 170 said, I don't know. Its in the legal department and there's a lot involved with it, but it should 171 be sometime next. And uh, I said, next year 1 might be dead or something. That's just, you 172 know you’re telling me that I got a cancer and that don't work for me. (they said...mumble) 173 So, what 1 did was I called up MD Anderson, because I did some research on my own. And 174 they got clinical trials coming out the ying-yang. And, uh on this particular one, they got a 175 guy, who uh, this is the one disease he's been specializing in for a longtime. And he and Dr. 176 Bass at the Mayo clinic collaborate together, and um, I looked at some of the clinical trial 177 that they have been doing and, uh, I really liked the one that's a phase 3 trial. Which, you 178 know that means it's probably not going to kill you whatever drugs they've got. It's a just 179 and so, I checked myself into MD Anderson with Dr. Feinstein being the referring physician 180 here. And we went out there and they put me in-in like two days, I mean it was like, I had to 181 pay a lot of money to get on Delta, you know in a day or two, if you don't have a week to go, 182 but I wanted to get on out there. And my wife went out there and uh, they ran some test 183 and of course they had to do al the tests again, which is fine. You know, you get bone 184 marrow and all this stuff, but anyway, um, they really got their stuff together out there. Running head: CANCER SOCIAL SUPPORT NARRATIVES 177
185 They do the test in the morning then in the afternoon, they've got the results and so you can 186 meet with the doctor, and you don't, I got the chance to meet with this doctor that I done 187 some research on. And he has a staff that also meets with you and they've got a lot of 188 nurses down there. And uh, he said he would uh, start me on the clinical trial that I'm on 189 now. And uh, of course you gotta sign a mountain of paperwork. But my wife was so 190 excited, she just shrieked when he said that he would start me on it then. And, so they gave 191 me a bag of drugs, literally, like a shopping cart bag. They gave me, you know, a month's 192 supply of pills and I came back home, and uh, I might be exaggerating a little bit, but within 193 a week, really within two weeks, I started feeling better. Because I was so tired, if I walked 194 down to the mailbox just to get the mail, it was hard, we're kind of up on a hill, it was hard, 195 not a big hill, a little hill, it would really, it would tire you out just to get back to the house. 196 And, um, within a week or so I could tell I was feeling better and I felt like, and now its my 197 imagination, I was afraid it was imagination, but I felt like the thing here in my side was 198 getting smaller. And y wife felt it and said, yeah, it does feel like it's getting smaller. And um, 199 1 had to go back to MD Anderson in two weeks and they give me the report, but a week 200 after I went there and I was feeling real good, I got a call from MD Anderson and they said 201 my insurance company said they weren't going to cover any of my MD Anderson bills an 202 my first day was like $10,500. And I asked them why and they said I don't know, so I called 203 my insurance company and they said well, see I’m in business for myself, so I have to buy 204 my own personal insurance policy. And I've been paying for my own insurance policy for 205 like 40 years. Never collected anything on it, and I called them up and they said, well on 206 page 35 of your policy, I think it was, uh, it states that you have to receive treatment in the 207 (sic) this state (sic). And MD Anderson, of course is not in the state of Georgia, so we're not 208 going to cover any of your MD Anderson. So I said, people here (sic) can’t do anything for 209 me. And, so we had to go around with that. And um, and also on the front of my medical 210 policy, it said, uh, medical and pharmaceutical. And to be honest with you, I didn’t read the 211 whole policy. I just read the front cover, I know what the deductible is, I know what it cost 212 to pay it every month. And the policy is 95-100 pages long, almost 100 pages thick. I didn't 213 read that. I did read the front cover, that's what I bought. And uh, they said, furthermore, 214 they weren’t going to pay for any of the drugs. And uh, because on page 96 or something, 215 it's said we will only pay for drugs administered by a physician in a hospital. These drugs 216 are about $20,000 a month. And, so, uh, the hospital called back the next day after I spoke 217 with the insurance people, and you know you've got this bill, what are you going to do. I 218 said, I've got about a 2-3 week's supply of drugs and after that I guess I’ll just die. I’m not 219 paying all this money, you know, I’m just not. My wife got all upset, she was going to sell the 220 house, do this, and the kids started calling, and I said y'all look, its ridiculous. I mean, you 221 know, I'll just, we'll just forget it. 222 223 And um, so they started, my son is with a computer company. And he's like a big deal with 224 the company, so he writes these letters to the president of the insurance company. And, um, 225 my daughter, who's in real-estate, and she's really good. She starts calling, her friends start 226 calling, and um, I got thinking about it and I said you this just... So I called my lawyer and he 227 said his wife had a rare cancer and said yeah you do have to fight with insurance companies 228 and he said frankly, it’s the way they got it set up, you won't ever win a lawsuit. I don’t 229 know what to tell you to do. He said, you know. And so, I went to my, uh, State 230 Representative, and he got me an appointment with the state insurance commissioner and Running head: CANCER SOCIAL SUPPORT NARRATIVES 178
231 we met up at the capitol. And I thought we had a good meeting because he couldn't believe 232 the policy I had. And it wasn't created under his tenor, so he was kind of off the hook as 233 approving it. And, uh, I was really kind of apprehensive about seeing him, because now, it's 234 a fact, most of the people who support the state insurance commissioner are insurance 235 companies. And most people don’t even know who to vote for, the insurance commissioner. 236 I didn't know him before, this was the first time. But anyway, he uh, looked at it and after 237 the thing was over, my representative, he said I'm a lawyer and I don’t read, we don’t read 238 our policies. I said, yeah, it’s just what's on the cover and people just see its what they get. 239 And he looked at it and he kind of, you know, he grunted. And he had this State Insurance 240 Commissioner, the guy that works for the state. He's like a full-time employee for the state, 241 you know. He gave me his card and said I'll be in touch with you and the insurance 242 commissioner, when I was walking out, he said uh, I'm going to call, he said, what's the 243 name of that guy over there, he said Joe or something. He said I'm going to call the 244 president of the company and I'm going to see what I can do for you. And uh, when I walked 245 out of the door and walked out of the capital, I got another call from my insurance 246 company, it was a woman, and she said this is so-and-so, I'm not going to name the 247 insurance company on this tape, but anyway, she said uh, I've been told to call you and tell 248 you that we're not going to pay for your drugs, we’re not going to pay for you-your going 249 out of state, and to tell all these people that are writing us and calling us and everything to 250 stop. And I told her, I said, well, this is something that somebody told you to do, like your 251 boss or somebody told you to do, to call me. She said yep. And I said, you tell your boss or 252 whoever told you, about this, to call me, you tell them that not only am I not going to stop, 253 but I just now got my second wind. And I said you haven't had nothing yet. 1 said I just 254 walked out of the office of the state insurance commissioner. And uh, if I've gotta go to hell 255 and back, you know, to do this, you know, we're in a, you're in a, y'all are in a fight. I said, 256 I’m going to tell you one more thing too. You-you, somebody told you to call me, didn't 257 they? She said yeah. I said, I'm'a tell you what you need to do. She said what? You need to 258 quit your job with that company. She said, well, what do you mean? I said, you're doing the 259 same thing that the Germans did in the concentrations camps. I said, one thing I did in 260 college is I read a journal of this German soldier, I believe it was in Auschwitz, and a first he 261 couldn't stand what he was doing. He couldn't sleep at night. He couldn't eat. All kid of 262 problems. But after a couple of weeks, he kinda got used to it. And I said, what you're doing 263 is, your telling me that its more important for your company to make a profit, then for me 264 to live because if I do what you say, I'm going to die. And, uh, I said what's happening is, you 265 could lose your soul for this. Because you, could you’re totally not acting right. I mean, you 266 know, just think about it, this is morally wrong what you're saying. And I said, I'm serious, I 267 said you go through this, you can tell your boss you could lose your soul. Your acting like 268 just like those people...and she called me back that night, you know, at home and I told her 269 I'm serious. She said you can't get a job, jobs are in a recession. And I said, better for you to 270 get a job flipping hamburgers or be on unemployment or something, than to put your 271 companies profits ahead of people's lives. I said, I said this policy is junk and I didn't know 272 it until I got sick. And, um, she uh, anyway to make a long story short, we raised, the Lord or 273 whatever involved in this and we've got it worked out and I've got a policy with the 274 Affordable Care Act and everything's, they are paying for everything and I hope it works 275 until I get on Medicare. So, I'm very happy. I've started, most of the people in the county 276 that I was really active with in a political party, and a lot of the people have just toned me Running head: CANCER SOCIAL SUPPORT NARRATIVES 179
277 out here because I told them, I said this Obama care thing is a good deal. I think, I said, 278 we've got to do something in this country, because there are too many people that have no 279 insurance, or they have a job and their insurance is with their job, and then they lose their 280 job, so they lose their coverage and then they get sick and lose everything they've got, or 281 they've got a policy like mine that they have been paying on forever and its just junk. And, 282 they don’t know it. Its like, mine, the lawyer said, we haven't even read their policy. We just 283 assume that what's on the cover is right. And I said, I said, there's probably a thousand 284 things wrong with Obama Care, but it's a step in the right direction and if you don't like it, 285 come up with something better. You know, I mean, I'm not a politician, I'm not a lawyer, I'm 286 not in the medical business, but I know what's right and I know what's wrong. And, uh, you 287 know, I got, I still got a lot of friends and everything, but they just tune me out. They think 288 I'm weird. They say, well he's got cancer, he's gong to die, don’t worry about him, he's, you 289 know. But, umm, anyway, that's where we're at. I don’t know what else to say, but I feel 290 good. I did get pneumonia a couple weeks ago, but I think I'm pretty well over that, so. I still 291 got a cough, but I feel good. And they say that I'm- I've reacted very well to the drugs and 292 they’ve asked if I could continue this clinical trial. Uh, I think for another four years and I 293 said, I'd be glad to do it. Because um, they like to, I don't know what they like to do, they 294 like to follow people. Piedmont hospital has been very good to because they work with MD 295 Anderson and they have allowed me to come here and do some of my lab work here, so I 296 don't have to go to Texas, but now I'm going there every three months, which is, for awhile 297 I was going there every month and before that I was going every two weeks. I am glad they 298 worked that out. It is a long haul out there. 299 300 Tavari: so it sounds like the things that have been most supportive is: um, having faith in 301 your physicians, your faith in God, ...having a supportive wife... (Very much so) and neither 302 or you are living in fear...(uh-huh) 303 304 Faith and God, yeah, physicians and family, yeah, all that helps. The kids are very 305 supportive too, church is very supportive so, you know. Um, you know I feel positive about 306 things. Had another cancer come along to, the um, basal cell carcinoma. That was kind of 307 minor next to all the rest of this stuff. That’s why I’ve got the mustache, because I have a 308 hole as big as a quarter on my lip here. So I'm kind a growing a mustache to cover this scar. 309 310 Tavari: so, that was the second diagnosis? 311 312 Yeah, that was 6 months ago, something like that. So, I go to the doctor all the time! 313 314 Tavari: but you're keeping a positive attitude? 315 316 I fell like I do. I feel like I do, yeah, just take it one day at a time. 317 318 Tavari: Is there anything else you feel like I should know in order to understand your 319 experience? Or understand your journey? 320 321 Not really, uh, I guess I rattled on too much, but uh, that's pretty much it I guess. These 322 massages are great. They are wonderful. We came here and looked at some of the cooking Running head: CANCER SOCIAL SUPPORT NARRATIVES 180
323 things. I think massage is the main thing we do. Its very nice. I'm glad you have that. Maude 324 is, couldn’t ask for better (How do you feel like massages help?) I think its very relaxing. 325 Gives you something to look forward to. I don't think I ever had one before I came here. Just 326 seemed like the right thing to do, again. Running head: CANCER SOCIAL SUPPORT NARRATIVES 181
APPENDIX H
PARTICIPANT 3 FULL TRANSCRIPTION Running head: CANCER SOCIAL SUPPORT NARRATIVES 182
1 Tavari: So, just like the question I asked a second ago, what has been most helpful throughout all 2 of this? 3 4 I think the support actually, like being able to come here and go to exercise classes. I don’t know 5 if you remember, but I came in and talked with you when I was like at my lowest time. And that 6 was through, you know, the radiation and being so sick at my stomach. I didn’t really, just, 7 expect all that. It's just the support of all the people and friends and stuff too its, you really find 8 out who your friends are. 9 10 Tavari: Can you tell me more about that, particularly friends? 11 12 Well, when I was sick after surgery several of my friends wanted to come stay with me, it’s like I 13 don't need all y’all at on time. So, umm one of my friends came and stayed a week and my 14 husband wanted to stay a few days before he went back to work so he, I think I came home on a 15 Tuesday, and he stayed the rest of that week with me and then a friend came from Blairsville and 16 spent a week with me, and one came from Nashville and spent a week with me, and another 17 friend that’s local came and spent a week, and that’s like “I’m okay now, I can stay by myself.” 18 So, I was able to stay on my own, but you know, all of my neighbors just like an outpour, they 19 were bringing over dinners, several of them were getting together cooking and bringing, of 20 course by the time, when I was going through radiation, I wasn’t able to eat, but at least my 21 husband was fed. I didn’t have to worry about any of that, so, that was wonderful. And I actually 22 didn't start the classes until after I completed radiation. I wish I had started sooner. 23 24 Tavari: What difference do you think that would have made for you? 25 26 Um, just being able to talk to people who were going through similar situations or had been 27 through stuff before. And like even the head neck classes that they have, I came to several of 28 those and that was helpful. Um, just, you know, the support from everyone who has had that 29 experience, it was nice to talk about different things, what to expect like from radiation. I didn't, I 30 had no idea that it could cause hearing loss. They’ve never really explained that or the fact that it 31 can cause you to stop producing earwax. So I went to an ear nose and throat, after talking, 32 because I was having ringing in my ear, and after talking to some of them at the head and neck 33 clinic, actually the instructor, he suggested I go to his ear, nose and throat, so I did and found out 34 I no longer produce earwax. It’s like, okay, I knew I hadn’t had any, but you know, and they 35 wanted to do a baseline hearing test, because he told me that over time you can actually lose 36 hearing. And he want to have something baseline to compare to so that was kind of interesting. 37 38 You just leam stuff, you know you just learn things and I talked to the radiation oncologist and 39 they don't really go into, I guess all the possibilities of what you can go through. Just some of 40 them, so. 41 42 Tavari: that’s even to me. I guess it makes sense, but it would be nice to know that. 43 44 Not that it, you know, I guess earwax is no big deal, but I was having ringing and luckily my ears 45 were, my hearing was fine, so I didn’t have to worry about it, but I did worry about it when I, 46 after talking to to them. Being a flight attendant, it’s like, okay I need to hear. Running head: CANCER SOCIAL SUPPORT NARRATIVES 183
47 So I don’t have problem with hearing, but that was just interesting finding that out, that it was a 48 possibility. 49 50 Tavart so, when your friends came to stay with you, what was that like? What were they doing? 51 How were they helping? 52 53 Well, one came in, actually while I was in the hospital and like cleaned all of my bathrooms and 54 vacuumed and dusted. Cleaned the house up, so when I got home from the hospital, I could come 55 home to a clean house. And, um, the first one that came stay with me she was the supposedly 56 going work from home, but I was in my talkative stage at that point and, so, she just sat around 57 with me and people came by, but she did cooking. I didn’t have to do anything, just kind of sit 58 there, relax in my chair, and watch TV, and visit friends that did come by. So, it was good. It was 59 good, having the support in just them being there. You’re not there by yourself. 60 61 Tavari: how was your husband throughout that process? 62 63 Um, he was good. I think he was, it's really sad because, I read something that he had written that 64 I had not seen, just the other day when I told him I was gonna come and talk to you. He had sent 65 a friend an email, and uh, he had talked to me a little bit about it, but he didn't think, and I didn’t 66 realize this until much later, he didn’t think I was going to come through surgery. I don’t know 67 why because the doctor never really said that. He just said that I might have problems with being 68 able, coordination and balance, but he never said anything about me dying and my husband, for 69 some reason he went off on that end thinking that when all formatting in thinking that, Oh you 70 know, she’s not even going to make it through surgery. He was really upset, but I went through it 71 like a breeze. I mentioned to you the other day, you know, like I didn’t get mad or anything when 72 I found out the diagnosis. Its kinda like, you know, when in the ER, can see it, you know, on the 73 screen? And they were like yeah. I went and looked at it and it was like, okay, so now what are 74 we going to do? You know, just kind of like, go ahead and get out. It was a quick but, I didn’t 75 have time to think about it, because I was diagnosed actually like Monday night/ Tuesday 76 morning and on Wednesday I was transferred to (sic) the hospital downtown and then on 77 Thursday I met with the surgeon, who I knew of, and that’s who I wanted. I already knew that. 78 Luckily I didn’t have to, I know a good bit about doctors, I used to work in the hospitals, so I 79 there’s good ones and bad ones. And on Thursday I met with him and had surgery Friday. So, I 80 did have time to think about it. 81 82 Tavari: And that was the surgery your husband didn’t thin you’d make it through? 83 84 Right 85 86 Tavari: It seems like it happened all very quick, for both of you. 87 88 It was quick. You didn’t have time to really think about it. It was kinda like okay... let’s just get 89 it done. 90 91 Tavari: But afterwards at what point did you start thinking about everything about the brevity of 92 it? Running head: CANCER SOCIAL SUPPORT NARRATIVES 184
93 94 Well afterwards, I did think about it and thinking about, I guess what could've happened and 95 not... and one of the things I mentioned the doctor didn't mention was the coordination and 96 balance issue, and luckily I didn’t have a problem with any of that. One of my friends that was 97 therefore my surgery and I didn’t realize she came because she was supposed to come with 98 another friend that was had-had a brain aneurysm, and she was in another hospital and she was 99 supposed to be there with them, but she came for my surgery and I didn’t know she was there 100 until I came through surgery and they wheeled me from the recovery room back to the ICU and 101 she was there with my husband, and I just kinda pointed my finger at her, and I said girl what are 102 you doing here? And my husband said he knew then that my coordination was okay because I’m 103 shaking my finger. And he said I had my attitude. So, then he felt much-much better. And then 104 when he came in the room and I was eating ice chips, he realized that I was going to be okay, I 105 think. 106 107 Tavari: So, they removed a tumor from your brain? 108 109 yes 110 111 Tavari: where was that? 112 113 In the cerebellum (right back here) and it was about 03.6 x 2.7 it was a pretty good size, I guess, 114 but he was able to get it all, so he said that he wanted me to go through radiation, because the 115 type that I had was the type that does come back, and he said that to get rid of it, I definitely need 116 the radiation. He had one or other patient, I never did ask him, I don’t think she had radiation, 117 but her’s came back and she ended up having like seven surgeries in 12 years, so he was insistent 118 that I go through radiation for it. And the radiation got the rest of it, so now I’ll just have to get 119 MRIs for the rest of my life. Every year, but that's, that’s okay. 120 121 Tavari: Any other family support? You mentioned friends coming to stay with you, no sisters, or 122 cousins...or...? 123 124 I have a brother and umm, he's not that much help, but he did come while I was doing radiation 125 and to feel like he was helping do something, he did drop me, a few times. He did come and stay 126 for a few days. And, uh, drove me to radiation and just sat in the parking lot until I came out. 127 That was his way of helping, which was good. 128 129 Tavari: Did he do anything around the house? Any other task support? 130 131 He weighs about 5001bs and he's not very active. He’s got bad knees and really somebody needs 132 to be taking care of him. Not him taking are of anybody else. He means well, but its just kind of 133 like, okay, you’re here, so now we’re going to have to worry about feeding you. That’s ugly, I 134 shouldn’t say that, but that’s kind of the way I felt. It’s like, what are you doing here? 135 136 Tavari: I think is more, not just about his weight and food, but its about how much responsibility 137 you have to take to care for him versus when your friends came they’re vacuuming clean 138 bathrooms-cooking meals. Running head: CANCER SOCIAL SUPPORT NARRATIVES 185
139 140 And he's not doing any of that. That’s just not him necessarily and the story 141 142 Tavari: Yeah, I am thinking that you don’t have to worry about entertaining them per se. 143 whereas, you had to played host to him, it sounds like. 144 145 Sort of... 146 147 Tavari: any other family members, though? 148 149 No. that's that's it. Both my parents are deceased. My mom actually died at age 52. She had lung 150 cancer and then my dad was 72 and he had Alzheimer’s. So, they both have passed away, but I 151 have cousins, and stuff, but all them are much further away. Like, up around Blairsville, North 152 Georgia. So, I got lots of phone calls and have an aunt that lives in Mobile and one that lives in 153 Dalton. And they would call, and check on me and send me cards and stuff. But, actually not 154 really coming to visit until one of my cousins did come, but it was much like later. It was 155 actually after I had finished radiation. So I actually felt more like having somebody there, so. 156 The surgery itself was not that bad. The recovery, I didn’t think, but the radiation is what I have 157 the rough time with. That was when I ended up so sick at my stomach and I ended back up in the 158 hospital a few days and had to have fluids. I was actually in, I think for three and a half days. I 159 was actually, I’d thrown up so much, I was throwing up blood. Because I had, everything was so 160 raw. 161 162 Tavari'. How about your husband’s family? 163 164 They would come visit and he has a sister, and uh, her and their daughter she’s like 21,1 guess, 165 they would come like, I think the first three or four weekends, they came and she would bring, 166 you know meals, like soup. Or, um, different things. One time, I think she brought a pot roast 167 and some veggies and stuff to go with it. It was good. I could eat then, until, like I said, the 168 radiation. Than that was when I was just like everybody was still bringing food, like the 169 neighbors, they would kind of the take turns. There was one in particular, across the street, 170 what’s funny is I didn’t even know them. She’s just got five kids and she was always bringing 171 something over. You know, they were just such sweet people. I really, got to know her really 172 well, (laughs) From being sick, and that was one really good friendship that came out of all of it, 173 because barely knew her. You know, they were so busy, I thought, with the kids. You know, I 174 would speak to her and stuff, but they had lived there for about a year and a half. I didn’t really 175 know her, know her, but they kept coming over, bringing all kinds of goodies, she’d bring over 176 pumpkin bread or just send it, you know, with the kids. Just different stuff, so 177 178 Tavari: have you maintained that relationship? Is it a friendship now? 179 180 Yes, all of her kids are in school now, so we try to get together for lunch every now and then, 181 and that’s nice. 182 Tavari: were there any other surprises like that relationships that developed as a result of your 183 treatment? 184 Running head: CANCER SOCIAL SUPPORT NARRATIVES 186
185 Umm, just, I think got closer to some of my neighbors that I, you know, like I knew them, but, 186 you know everybody's busy kind of does their own thing, but they made it a point to, you know, 187 come and visit, spend time with me, bring my husband food (laughs). And I did not expect that 188 all, that kind of blew me away, because, you know, I mean, I knew them all, but you know, you 189 just don't really expect it, I guess. That kind of amazed me that all them of them would do that. 190 And there were other friends, too, I mean there were other friends like I used to work with when 191 I worked in the office at Delta. Lot of those came out, you know, I had not talked to them for a 192 long time, but they found out about it and they would send me, you know, stuff like once I hadn’t 193 probably seen her in like gosh, its probably been 18 years (wow) and she sent me a cup through 194 the mail, one of those insulated, (laughs), nice cups, and I’m like “oh, you know.” So, its just 195 tunny how people come through when you’re sick, you know. 196 197 Tavari: how about new friendships here? New relationships here at Cancer Wellness? 198 199 Oh, Yes definitely. Lots of ladies that exercise class with, we’ll go to lunch sometimes like Leah, 200 I had lunch with her several times and she's amazing to me what all she's gone through and still 201 getting chemo, but, you know, still tucking along. I mean, just, all of them have been some nice. 202 I remember the first data came, umm, Dee was the first thing that like, you know, kind of like 203 embraced me and said hey, we’re so happy to you and she was so bubbly and stuff. I jus really 204 hate that about her. And then Susie and Shirley, I mean they are all just, everybody is so nice. 205 206 Tavari: Do you feel like those are friendships? Do you talk them outside of this space? 207 208 Yeah 209 210 Tavari: in particular, you referenced Leah, when you hear stories like that is it uplifting for you 211 or hopeful for you? 212 213 Yeah, it has some especially with what all she’s been through and you know, she still got that 214 attitude and you know, just keeps on trucking, so, yeah. And Jana has been.., I mean they're all, 215 everybody is just really nice. It’s just nice to have met them all. I enjoy coming every week to 216 see everybody, you know, its fun. 217 218 Tavari: so, you and your husband don’t have children? 219 220 No, no kids 221 222 Tavari: Alright, And how? You mentioned somebody at work that was supportive, do you feel 223 like overall your job has been supportive, is there anyone in particular who stands out? 224 225 A couple people, one of my friends actually used to work with her in the office. She is not a 226 flight attendant. She was for another airline; she quite Delta. She actually works at the flight 227 station, but we kind of remained friends; kind of like off and on, you know what I mean, and so 228 since when I got sick, she was in contact with me, you know, she would come by, she’d bring me 229 flowers, and come visit. You know, she was coming by like every week to check on me and uh, 230 then a couple of other friends that were flight attendants, you know, would come by, and check Running head: CANCER SOCIAL SUPPORT NARRATIVES 187
231 on me, and call you know. And it was people that I would be friends with, but still I didn’t really 232 have that much of relationship, like it wasn’t like we went out want to lunch and did things. We 233 would just kinda’ talk and enjoyed our trips together; layovers, but we really didn't do anything 234 outside of work except for them to take the time to come, you know and see me and some cards 235 that just you know, touches you. And then there's a couple of people that just kind of fade away. 236 It's like, and one of them was one of my neighbors. You know, we’d been kind of close, doing 237 lunches and stuff - and then she just kind of called, and I don't know if it was just the fact that, 238 you know, I think some people just don't know how to deal with stuff. What’s strange to me 239 though, is she had-had breast cancer herself, and I know it is totally different from what I had, 240 but you know, she called, my husband called and let them know about it and then she called once 241 at home. And the, I never heard from her again. And we would like go out to lunch and do 242 things; that’s what I mean you kinda like find out who your friends are. But again, it cold just be 243 her way of dealing with it o something, but what's really strange is we really never kind of never 244 rekindled it and a sign goes up in their yard and they are selling their house and they have moved 245 out the next weekend and this just happened like, you know, about six months ago. So I don’t 246 know, you know, if it brought back memories for her, you know, I mean you just don't know 247 what people are thinking or, you know, but I didn’t want call. I didn’t call people. It is like, if 248 you want to get in touch with me, and I am bad about that. I really am. That’s one of my faults, 1 249 think, that I have in myself is; and I was talking to my husband about about that, its like all the 250 friends that I have, its like I’m not really good about calling them and trying to get together with 251 them and I need to be better about that. (Uh-huh) 252 253 Tavari: yet and still you have at least four friends that came from everywhere from Nashville to 254 Blairsville to show up so how did they get there? If you didn’t call them? How did they? 255 256 Oh, my husband had let them know, (okay) Oh, he called everybody. He sent text to people. He 257 got my phone, and he just went to town. I mean people that some, you know, probably I didn’t 258 even want him to get in touch with, but it like flight attendant friends and then of course flight 259 attendants know each other, you know then everybody (laughs) is finding out that. There's like 260 one guy that’s a friend of mine, that’s a gay guy, and there's another guy. I mean, he even text 261 them and told them, I’m like really (laughs)? And so one of them, Curtis, who is married to a 262 flight attendant, he was like calling me and stuff, but Curtis and I are good friends. And he’s 263 married to a flight attendant, so. 264 265 Tavari: so with your friends who did show up, it’s because they knew who they were dealing 266 with? They knew that you weren’t gong to ask for help, so did they just showed up on your door 267 step? 268 269 Um, yeah, probably so. Yeah. 270 Tavari: And long have you been friends with them, no, go ahead... 271 272 Well, Kathy from Nashville, umm, all my life she lived three doors down for me growing up, so 273 we’ve been friends and kinda lost touch actually after we both had married. I was in her wedding 274 and she was in mine and then it was like, she did her thing and I did mine and then my husband 275 ran into her father at a time station and found out that she was pregnant, so I called her, and I at 276 that time worked for General Electric on Chattahoochee Avenue and she worked for Pepsi, Running head: CANCER SOCIAL SUPPORT NARRATIVES 188
277 which is just right down the road, so we started meeting for lunch once a week and kinda got 278 reacquainted. They lived in Hapeville and we lived in Riverdale, so we started to get together on 279 weekends and just started our friendship backup again, you know. And I really didn’t know her 280 husband that well. We did go to the same school, because my husband and I went to high school 281 together too and they were, you know, he was a year younger than me, so didn’t really know him 282 that well, but he’s a great guy. 283 284 Tavari : And they are still here (sic)? 285 286 No they, they’re the ones that live in Nashville. They moved (sic) here and we followed them, 287 then they moved to Nashville. It’s like, we’re not following you there. But, we were just in 288 Pigeon Forge with them a couple of weekends ago. It was fun. So we’ve just remained really 289 good friends all this time. And then (sic), the one that lives in (sic) another city, I actually 290 introduce my husband's uncle to her. They were both divorced, and they've been living together 291 never married, but they probably been together now for like 19 years and she lived in Griffin, he 292 sold his house and moved in with her and then they've moved to Blairsville. And he's retired, but 293 she works for UGA and there's a small office up there and they let her move from Griffin, 294 because what she does is mainly computer stuff, so it really didn’t matter where she worked; she 295 talked them into letting her move up there, so. They’re up there around Blairsville. But, she was 296 my neighbor from our first house back in 19.., let’s see, we moved in there in ’78. She probably 297 moved in ‘79 or ’80. So, we’ve been friends since then. I mean its just long-time friendships, 298 really, most of them. And the others are work related. You know, like from the office. I’ve been 299 with Delta for 29 years. So, April, she was hired probably a few years after me, because she’s a 300 little bit younger. 301 302 Tavari : still, probably 20 year friendship? And those were the three that. 303 304 Yeah, I like to keep my (In audible) 305 306 Tavari : How long were you off from work? 307 308 About 5 months, it started in October and he let me go back to work in March, but I only had one 309 trip, it was like a turn around and that was it for the whole month. And I had vacation, like three 310 weeks of vacation, because built it up and they let me take it, you like, if I was out sick, like built 311 up, and they take it away if you're not using it, so when I went back and got to use it all. And um, 312 our vacation actually runs through the end of March, so, I went back in March and did one trip, 313 and then April, the next month, I worked like a full schedule, but tried to drop down and didn’t 314 want to fly as much; so when I went back I was real slow; and I was actually still sick when I 315 went back. I mean, like I remember the like a few days just you know getting ready to work and 316 just the movement, something about getting up in the morning I was just so nauseated. And, 317 umm, I remember coming and talking to (sic) the previous dietitian about it, think I talked to 318 you too, and its like, umm, just the movement around, would just make me sick. I’d be throwing 319 up and trying to get ready and go to work. But, finally eating crackers, like bananas, and drinking 320 apple juice and finally got better, but it took a long time. 321 322 Tavari: what was it like for you to be out of work for so long? Running head: CANCER SOCIAL SUPPORT NARRATIVES 189
323 324 Well, when I was going through radiation I was honestly more like a little zombie or something 325 because I was so sick and not able to eat and drink. I would just try to force, like, crackers down. 326 I just couldn’t myself do it, and I knew if I didn’t eat, I was going to end up in the hospital. I had 327 a really hard time with that part of it, but it was more like I was sort of like a zombie sitting in 328 front of the TV. It was on and I would know or not know what was on, and a lot of times like I 329 had it on Hallmark Christmas movies, you know, just one after another. But I probably couldn’t 330 have even told you what I was a really watching. It was just kinda like I was there. And then 331 people would come, and visit, and stay. My friend Karen and Wayne, they kept coming on 332 weekends and stuff to visit and now it was like they wanted to go out to dinner and I was like, 333 y’all just go, I’ll stay here. And I would just sit there, for a long time, for months. I came to see 334 you, I think, when I was going through all that. I was real depressed just because to me, being 335 sick, nauseated, throwing up, that’s the worst kind of sick anyway. And I have had that that 336 several times in the past, cause I’ve had food poisoning, I’ve ended up in the hospital probably in 337 my lifetime about six times. From that, and to me I don’t know why that's the worst kind of sick. 338 You just feel, I remember one of times that I had food poisoning and my husband was there with 339 me, and I’m like, oh Lord, please just let me die. That’s how bad I felt, so is not a fun sick. To 340 me, that’s a lot worse than the surgery. But, anyway. 341 342 Tavari : Are you guys involved in a church? 343 344 Um, we don’t go full time, but we, you know, have tried different churches, but way I have to 345 work, sometimes I have to work on Sundays, and stuff so, we’re not totally active right now. 346 We've been taught-talked about that and would like to get back into it, but just haven’t. 347 348 Tavari: so, no particular church community that was helpful throughout this process? 349 350 No, uh-huh. 351 352 Tavari: Is there anything that I’m missing? So, we talked about people at work, we talked about 353 friends, your husband, family, is there anything else or anyone else that was supportive through 354 this process or was helpful? 355 356 Well, like I said, I mean, y’all, you know when I did come and talk to uh, what’s her name? 357 Maude? Umm, ( MaryLynn) Maude Lynn, yes, I talked to her a few times, during, she came 358 down when I was in radiation. And then, she was so cute, she was trying to get me in the young, 359 the young group. And I said what age is that? And she was surprised I’m as old as I am. (That 360 you were were over 42?) Yeah, she was just like, oh I thought you belonged to the young group. 361 That was when I was having one of my moments with the nausea and stuff, so, it was 362 everybody/one has been so helpful. I mean, coming to talk you that day, you were like what 363 would you like to do? It’s like, well, I like going shopping. I like going to Ross and TJ Max. I 364 don’t know if you remember all that. And you said, that’s the first time I got a smile out of you. 365 But I’d just been so sick and not feel like doing anything. All I did was sit around the house. And 366 them even afterwards, I went through a long, almost a year of sleeping a lot. If I wasn’t at work 367 I’d still be sleeping, so. But my sister in-law was real helpful, she would, umm, I was telling you 368 she would bring food a few times. But she would call, if not me my husband and text me to see Running head: CANCER SOCIAL SUPPORT NARRATIVES 190
369 how I was doing. And there were friends from the mountains too, we have other friends up there 370 and they didn’t come down, but they were always calling and texting, so. There was a lot of good 371 support. 372 373 Tavari'. what else you do? What other hobbies do you have? 374 375 Um, reading, I guess. I read a lot. TV, we go to movies, shop, still like shopping 376 377 Tavari'. Do you think those things have helped, even when you were veg’ing out with the 378 Hallmark Channel, do you think that was helpful for you during that time? 379 380 Yeah, I do, because it was something good to watch. It was uplifting, you know, most of their 381 movies are. It was, you know, pretty good. 382 383 Tavari'. Do you think it was a positive distraction, though, not thinking about your caner thinking 384 about whatever they’ve got going on? 385 386 Probably, because I didn’t really sit and dwell on it. It’s like, you know, I kinda mentioned that, 387 you know, I didn’t get angry, I didn’t get mad, its just kinda like, I just went through it and I 388 thought, well is that normal? {laughs) You know, that’s why I kinda brought that up the other 389 day and this may not be the time to even talk about that, but it's just bizarre to me, you know, 390 when I talk to other people about the anger and stuff that they’ve gone through and just reading 391 like, um, you know, um, when people die you go through your grief, its kinda like that I guess, 392 but I didn’t really go through that. And, I don’t really understand, you know, I just thought that’s 393 kinda weird that I didn't go through all that and get angry, it's kinda like, just I was just there, and 394 its like, what's next? Just kinda sail through and I don’t know. 395 396 Tavari: well, I would ask you, how you dealt with other stressful events in your life? 397 398 Umm, well, I mean like when my mom died, that was devastating, because I was so young and 399 she was able to my wedding, but she was sick at the time. She had lung cancer and that was 400 probably the most, first traumatic experience I had gone through and I was just really upset, 401 because she wouldn't get to see, you know at the time, if I had kids, you know, and just, you 402 know, me married and happy and just have her, you know, around during my adult life, so. And I 403 was sad. 404 405 Tavari: so, you didn’t sail through that? 406 407 No, I didn’t sail through that one, no. And the with my dad, I was really upset when we found 408 out he had Alzheimer’s and it was, looking back he’d had it for years, but you know you’re in 409 denial and oh no, that’s not what it is, it’s something else. Matter of fact, one doctor diagnosed it 410 and then we took him to another doctor, or a group of doctors at Emory, and they were like, no, 411 he don't have that. So then there’s that little bit of hope and then you keep on going and it turns 412 out that was what it was. So to me that was really devastating finding out and everything and 413 then, you know, just go through with it. He had re-married and we had a umm, full-time sitter, to 414 come and stay with him even though he was married, she couldn’t take care of him, so we hired Running head: CANCER SOCIAL SUPPORT NARRATIVES 191
415 this lady from Jamaica. She was just wonderful with him. She stayed with him for three years 416 and umm, you know, till the very end. Matter of fact, she was the only one with him when he 417 passed away. She called me and I came, then there was another lady, we went through three 418 women on the weekend. They were all from Jamaica too, its friends of theirs. They were like a 419 little group. It was friends of theirs that, you know, they worked out to come and stay so, um, but 420 we had Lisa there, you know all that time and that was great having her, but then actually when 421 he passed away it was more like a relief, I guess, I didn't go through, I think I’d already been 422 through it. I'm initially lost him, I guess, you know, so then after he died, then it was kinda like a 423 relief and blessing, because I know he didn’t want to be here that way. 424 425 Tavari: So, but his diagnosis was traumatic for you? 426 Yes 427 Tavari : and you felt like you had emotions then? 428 Yes 429 Tavari\ you didn’t sail through it? It wasn’t easy-peasy? 430 No. 431 Tavari: But having a brain tumor was? 432 Yeah, (laughs) 433 Is that crazy? 434 Tavari: I mean, I'm confused as to what you think the difference might be? 435 436 I don’t know really. I mean, its kinda like... I mean, I really don't know. It’s like, it is what it is. I 437 can’t do anything to change it, just go through and you know, just deal with it. It’s a matter-of- 438 fact, when I saw the doctor and hospital on Thursday before surgery, I asked him, do you think it 439 is cancer? And I said, I want you to be totally honest and up-front, my husband was standing 440 there. I said I want you to be totally honest and up-front. I don’t want you hiding anything, 441 telling him something I don’t know. I want to know whatever. I said, He told me that he thought 442 it was cancer. He said, I'm not staying that it is, he said, but I’ve never seen it look like this and it 443 not be. He said, you asked for the truth And I said, okay thanks. And I didn’t get upset or cry or 444 anything, I said okay that’s the way it is. I think we can get it taken care of tomorrow. I think it 445 happened so quick, I didn’t have time to think about it... May be that was part of it. 446 447 Tavari-. that makes sense, particularly dealing with your mother’s lung cancer and your fathers 448 Alzheimer’s those can be long drawn out things. 449 Long drawn out. 450 Tavari: But even, so yes, that first week I can se how you’re saying, you know what, I was numb 451 and it was just about moving forward and getting this done, but even afterwards... 452 453 Even afterwards, it’s really strange, because I could remember like every little detail, its like my 454 brain was enhanced after having the surgery, which is so weird, but like, just every little detail, 455 my husband was saying that, its like, you shouldn’t have let me be on the phone, because I would 456 be talking to people and telling them all these details and stuff. Its like, I told him the other day, I 457 said, if I ever have to have surgery again, I said, do not let talk on the phone (laughs). But, umm, 458 you know, people were like, my friend later told me, she said, I’m surprised you were telling 459 everybody so much information. She goes, you’re more private than that. She goes, I don’t 460 know, she said, I wanted to say something to you, she said, but were just on a roll (laughs). Running head: CANCER SOCIAL SUPPORT NARRATIVES 192
461 462 Tavari: I do wonder if it was because they were in there messing with your brain. 463 464 I don’t know, but I bet that was amazing to me, but you know, and then I didn’t sleep after the 465 surgery either, you know, just stayed awake, but you know I kinda just watched TV and, you 466 know, just my husband would be sleeping then. Uh, for a while, you know, had not been able to 467 really eat either. They’d give me, what is that, prednisone stuff, so then I was wanting to eat 468 everything under the sun and we had had some Halloween candy left, so, my husband would go 469 to sleep and I’d sit there and eat the Halloween candy. And then when I went through the 470 radiation then that, all that stopped. They had taken me off the steroids after the surgery but right 471 after the surgery I was on the steroids for a couple of weeks and I just was eating anything and 472 everything. Even (sic) at the hospital I’d order, my husband was on the phone and I’d order food, 473 you know, they’d bring it in and its like two trays (laughs) and I’d sit there and eat both while 474 my husband’s just Shaking his head. Its like, hey you know, the salads are really good here 475 (laughs). But I mean, I just, you know, just took it a day at a time. Just recovered and I felt 476 everything is going (sic) to be okay, so I didn’t really get upset or anything. 477 478 Tavari: yeah, so that makes sense. There is a sense of urgency that that first week and then for 479 the most part its either taken care of or you have a plan in place, so being feeling secure about 480 that whereas, you know, with your with your mom’s lung cancer 20-30 years ago, there wasn’t a 481 fix-all. You knew where this is going. You knew that with Alzheimer’s disease there wasn’t 482 going to be a cure in your father’s lifetime. (Right) So, maybe its that sense of hope that sense of 483 hope that you had for yourself (yeah, right) that there’s a plan, this isn’t cancer, it’s just a benign 484 tumor that they are going to remove and we’re going to take care of this (right) and put it behind 485 me. 486 487 What’s strange though and I told my husband this, I told him years ago, I always felt like I was 488 going to die young. Like, my mom died at 52 and I don’t know why I’d said that to him, so when 489 I got the brain tumor I even told him that and I don’t know, its like I put that thought in his head 490 that I wasn’t going to make it through the surgery, you know, its like okay, but for some reason, I 491 had always thought that. Its like, okay, I am not going to live to be old. No, I’m going to die 492 young, like my mom. But, she was a smoker and I never have smoked. So, I don’t know why I 493 had (sic) that at the back of my mind that, you know, I would die young. 494 495 Tavari: I think for a lot of people its sometimes hard to see ourselves past the age our parent live 496 to. 497 Yeah 498 Tavari: and sometimes people are acting out around 52-54 AND they are doing all kinds of 499 crazy things and every now and then as a therapist its important for me to ask “so how old was 500 your dad when he had a heart attack? Oh, 54. And you’re how old? I’ll be 54 next week? Okay, 501 and helping people make those connections, because sometimes we live out those, false 502 premonitions. (Right) Even your thought of, well, I can’t I’m not going to live to be old 503 (YEAH). You make sure that doesn’t happen too. (Right) 504 505 But I was 55 when I was diagnosed. As a matter of fact, I didn’t feel good on my birthday and 506 that was a couple of days, a few days after that I went to the hospital. This,, it’s really strange, Running head: CANCER SOCIAL SUPPORT NARRATIVES 193
507 because at first it was just I didn’t feel good for a couple of days and then I had started with a 508 headache and then that is when I went to the emergency room. 509 510 Tavari: Do you feel like you are an optimistic person? In general? 511 Uh-huh, I do. 512 Tavari: Do you think that has helped throughout this process? 513 I do, definitely. 514 Tavari: How about your husband? He seems pretty uplifted otherwise.. 515 YES, he is definitely. 516 Tavari: Are there any pessimist around? Any Debbie Downers? 517 Um, a few that I’m friends with, but I try not to be around them much, because I think that does 518 kind of bring you down. I think its better to be (sic) around people that are positive, and you 519 know, if, one of them is a friend of mine and I try to help her, I guess, you know, its like it could 520 be, you know, something totally opposite, you know, you gotta look at things differently, but she 521 still doesn’t seem to get it. So, I just try not to be around her a whole lot. 522 523 Tavari: Is she negative in terms of your situation? Saying things like, you know it can come 524 back? 525 526 No, we don’t really talk, yeah, her own stuff. But I found its better not to be around those kind of 527 people. Because they can bring you down. So, I try not to go there. (Laughs) 528 529 Tavari: is there anything else that would be helpful in my understanding of what has gotten you 530 through? 531 532 Uh, GOD. I believe, definitely. 533 534 Tavari: Were you actively praying or are you more of an internal thinker? 535 Yes 536 Tavari: How about your friends, your husband, were they actively praying? (yes-yes) 537 538 Yes, and you mentioned churches. Some of my neighbors belong to churches and they would put 539 me on the prayer list, and, so, you know, different people from all these different churches were 540 praying for me too and you know I felt like all of that was very helpful. 541 542 Tavari: you think that helped to get you through. 543 544 I do, yeah. And I loved my doctor. (Laughs) I think he was great. I really do. That, you know, I 545 think you have to really believe and trust in your doctor as well. 546 547 Tavari: and it sounds like you had done you research ahead of time. 548 549 Yes, thank goodness. I had actually had surgery, where I herniated two disks in my neck that 550 were bulging and pressing on my spinal cord. So, I had actually seen this other doctor and (sic) 551 he actually had an accident a couple years before, playing around with the neighbor’s dog, over 552 their house and somehow the dog tripped him and he fell on their glass tabletop and severed his Running head: CANCER SOCIAL SUPPORT NARRATIVES 194
553 arm and so he was not able to perform surgery anymore, so he had to stop practicing. I think he’s 554 teaching now, but this other doctor had come in, in the meantime and I didn’t really know him or 555 know anything about him, but several people in the office had recommended him and said, oh 556 he’s a great surgeon and then I went to (sic) the breast surgeon up at (sic) the other hospital and I 557 was talking to him, I told him that (sic) my preferred surgeon no longer practiced, you know, 558 who would he recommend me follow-up with. He mentioned (sic) this new physician. He said 559 sometimes he doesn’t have the best bedside manner, but if you need like a surgeon, umm, are 560 really good excellent surgeon, that’s who I’d go to. And, so, that’s who the emergency room 561 referred me to. And I had heard from, like I said, from different people in the offices, from 562 another doctor, so when he came in the room, we just hit it off. I just told him I’d heard real good 563 things about him. I just kinda started bragging on him. What I had heard from different people 564 and he just kind of sits over there and grins and, um, we just hit it off. He was wonderful. 565 Sometimes the only thing I found about him is he doesn’t like-like volunteer a lot of information. 566 You have to kind of pull it out of him. But every time 1 go, I get hugs, (laughs) 567 568 Tavari-. well, if there isn’t anything you want to share or feel like I need to know, that would be 569 helpful? 570 571 I can’t really think of anything. Can you think of anything? Anything else? 572 Tavari : No, that’s all of the major areas. Thank you. Running head: CANCER SOCIAL SUPPORT NARRATIVES 195
APPENDIX I
PARTICIPANT 4 FULL TRANSCRIPTION Running head: CANCER SOCIAL SUPPORT NARRATIVES 196
1 Tavari: So umm, really want to know what has been most helpful through your cancer 2 experience? What’s helping to get you through? 3 4 The biggest thing that helps me get through is coming to Cancer Wellness, and talking to other 5 people here that have been through it, and nobody’s pressuring me, nobody’s, umm, saying I’m 6 sorry. I hate that word now. I hate to hear somebody tell me “I’m sorry.” Um, but here, nobody 7 tells me they are sorry. They understand where I’m coming from. They answer my questions if I 8 have questions. So, it’s been wonderful and doing the arts and crafts kinda pulls my walls down. 9 Because when I started, I had a huge brick wall up and I wouldn’t let anybody through it. But 10 finally, through lots of talking here, with yourself and other people here, as well as patients, um, 11 my wall’s come down. (Okay) So, it’s really helping a lot, especially my mindfulness, (okay) My 12 mindfulness has been a blessing. 13 14 Are there other people in your life that you think have been helpful through this process? 15 16 Oh, yeah. Yes, I have my mom, and I have my other half, and my dogs or course, my son, my 17 granddaughter. I have a very-very strong family. Very strong family, that is right behind me. 18 Every time I fall, they’re there with hands out, ready to pick me up. 19 20 And how in particular have your mom, your other half, your son, like what in particular have 21 they done to make this process a little bit easier for you? 22 23 They listen when I do need to vent. They listen. They know that they’re not supposed to tell me 24 they’re sorry or actually, they usually don’t say anything they just let me spill it all out, which is 25 nice, because not many people can do that, especially family members. They want to fix 26 everything. And, you can’t fix this. You just have to deal with it. 27 28 So, its been helpful that um, your mom, your other half, and your son aren’t trying to fix 29 everything? They’re just listening {Right} but they know what their limitations are {correct} 30 they know they can’t solve the problem. 31 32 Correct, and they know that I have bad days, I have good days. My bad days, I might sleep for 12 33 hours. They freak out, of course, if I don’t answer my phone. But, they’ve gotten to the point 34 where they kind of understand where I’m coming from. And, they just listen to me, and they 35 come check on me if I need to/if they need too or whatever. 36 37 Okay, so I’m going to put them in the family category. How about friends? Are there friends 38 who have been, specific friends who have been supportive? 39 40 Yes, um, well, when I was first diagnosed, I was Ms. Popularity of (sic) this county. I worked 41 down the street. Everybody, I couldn’t go anywhere in (sic) this town without somebody 42 knowing me. It’s still basically the same thing, but friends? True friends? I went from a circle of 43 friends from probably, there was probably a circle of 25 that I actually hung out with, now 44 there’s two. (Okay). Because once you get cancer, I don’t know if its people are afraid they’re 45 gonna get it, or they’re afraid they don’t want to see me sick. I’m not sure what it is, but 46 everybody’s gone now. Plus the fact that I can’t drink and I don’t drink. Um, I think that’s a big, Running head: CANCER SOCIAL SUPPORT NARRATIVES 197
47 big, big factor. (Uh-huh) I can technically drink if I want to, but I’m just not a drinker, but. 48 49 Were you drinking before? So, with those 23 people that fell off, was it a friendship that was 50 very social, around beer? Around drinking? 51 52 I used to go to a lot of parties (okay), umm just because I’m a social butterfly. I like to talk, as 53 you know. I like to be around people. People make me happy. If I’m by myself, I get very 54 depressed. I get very...I have a pity party. But, if I’m around other people, I just fell happier. It 55 just lifts my spirits. So, we were constantly either, everybody was ta my house and they were, 56 you could drink at the fire-pit, that’s fine. Nine times out of ten, I didn’t drink because I have 57 never been a drinker, but.. .that’s all I can guess is they know I don’t really want the alcohol 58 around me now, umm, and of course if anyone smokes pot around me now, yeah, I just want to 59 pop’em. (laughs) Umm, but that’s all I can figure is that it’s a fear factor of seeing me sick or 60 they’re afraid they’re going to get it one, I don’t know which. 61 62 So, are you still having events at your house? Are you still having gatherings and parties, or not 63 so much since you’ve been diagnosed? 64 65 I do, but, its usually only.. .family (okay). 66 67 So, do you think that...you’ve kind of...that you’ve changed? So, maybe you’ve kind of cut 68 them off too? 69 70 I don’t think so, because like, when I was diagnosed, of course I was still living (sic) here at that 71 time. People were constantly at the house; when I was first diagnosed. Umm, and I lived in (sic) 72 in this city for about two years after I was diagnosed. And that’s when it went down to like two 73 people. I mean, I know there’s a couple that I cut off, because I couldn’t stand to hear them. 74 (Hear them say what?) 75 76 Because one thing about cancer is, you hurt in different ways and my type of cancer is not 77 curable, so I hurt everyday and blah, blah, blah. And then when I hear people talk about “oh my 78 God, my leg has been hurting a week. It’s a muscle cramp, its this, its that” and it goes, on and 79 on, and on and on... like “oh, shut up! Shut up!” I don’t want to hear it. Live my life for one day, 80 you know? 81 82 Why are you so frustrated by them when that happens? Is it because they’re not going to see the 83 doctor? Or is it because you feel like “you have nothing to complain about?” 84 85 It’s because they don’t go to the doctor. Because, had I not gone to the doctor, I mean, there was 86 nothing wrong with me when I went to the doctor. So, it’s a fear factor for me personally, you 87 know when someone over here is suffering with a migraine. It could be a tumor, take your butt to 88 the doctor. You know, don’t just go get Excedrin Migraine, go to the doctor. Do something about 89 it. Don’t sit and complain about it. Go! I mean, I know insurance is a big factor these days, but, I 90 don’t, uh-uh. I’ve seen too many close calls here at Cancer Wellness, you know? And I just, I 91 don’t want to see anybody go through it. 92 Running head: CANCER SOCIAL SUPPORT NARRATIVES 198
93 So, tell me about the two friends that have stuck around. 94 95 Umm, you’ve seen them both in here, but I don’t think they need to know that, right? Umm, 96 well... 97 98 I just want to know what kind of friends they are to you. 99 100 Kim and I have been friends since I was 14 and I’ll be 44 in October. Heather and I have been 101 friends for probably about 7 years, seven or eight years. And I’m there for them; they’re there for 102 me. We all go eat. We al have our own little lives. We all have our own little problems and 103 we’ve just, somehow we’ve just gotten through it. We’ve gotten through all the barriers that life 104 throws at us. Which has been great and you know they’ll call me and sometimes we go two or 105 three months without speaking, but its not because we’re not friends, its just life takes over. But 106 we always seem to pick up right where we left off. 107 108 So, what did they do to make life better? Are they distracting you from cancer? Do they just 109 make you feel normal? 110 111 They do distract me from cancer. They make, they treat me like I’m normal. They don’t treat me 112 any different than what they did before. Which, I guess, I need that. But its not like I have AIDS 113 or something where I could spit on you and you can get it, you know? So, it really nice for 114 somebody to actually give me a hug when I’m needing a hug, you know? Instead of “whew, I 115 don’t want to get involved in that drama.” Its not drama, its an illness. So that’s one big reason 116 why I come to Cancer Wellness, because it makes me feel normal. 117 118 Are you still working? 119 120 No, the doctor won’t let me work anymore. 121 122 Okay, do you still associate with the people that you used to work with? 123 Oh, yeah. 124 125 And are they helpful throughout this process? 126 127 I don’t know if I would call it helpful. It’s just the same “I’m sorry.” And I know they are truly 128 sorry. I know, I’ve been on that side of the bridge. I understand. It’s just, when you are a cancer 129 patient, there’s certain words you don’t want to hear anymore. Because, we say the same thing 130 when we go to a funeral. “I’m so sorry. I’m so sorry.” Sometimes you just need to hear 131 “everything’s going to be alright. Everything’s fine.” 132 133 So, when people say “I’m so sorry,” you feel like they are leaning toward the negative as 134 opposed to the hopeful/positive things? 135 136 Right, like, “I’m sorry you’re going to die,” is what goes through my brain. And it’s not a death 137 sentence, because there’s only one person that knows if I’m going to die tomorrow. And it’s not 138 that person saying they’re so sorry. So... Running head: CANCER SOCIAL SUPPORT NARRATIVES 199
139 140 Speaking of which, do you? What does your faith like? Do you believe in God, do you pray, do 141 you go to church? Any of those things? 142 143 144 I do pray, I do not go to church. My dad ruined that for me. My dad, umm, I was raised as 145 Baptist and my dad was a preacher. No, I wasn’t the wild preacher’s daughter, but he was 146 married nine times. He beat al of his wives including my mother. He abandoned his two kids and 147 he eventually committed suicide. So, my view on church as a whole, is just I don’t know. I don’t 148 want someone preaching at me that could go home and do such a thing. I read the bible; I love 149 God. He’s the only reason I’m still here and I know this. I pray every morning and I pray every 150 afternoon. I know I’m going to heaven one day. 151 152 Tavari: Do you feel like you have kind of incorporated he mindfulness classroom, your 153 mindfulness techniques into your spirituality, into your spiritual process? 154 155 I definitely have. I have finally learned the difference in praying and meditating. Praying is me 156 talking to God. Meditating is God talking to me. SO, I’ve FINALLY figured that out. 157 158 So, tell me how the mindfulness class is helping you to cope or to get through this process. 159 160 Mindfulness really helps me because there’s, depending on how many people are there that day, 161 if there’s a new person, if there’s someone I don’t know, we all go around and we talk about our 162 experience. What we have, you know, how our other half is helping us, our appearance, whatever 163 and you can get stuff off your chest. Appearance, whatever and you can get stuff off your chest. 164 I’ve cried many times in cancer, in Mindfulness, because it’s a safe place. It’s a very safe place. 165 Everybody understands me and then there will be, you know, there was, I can’t remember what 166 is, there was one time I had a question about... Oh, I know what it was. I didn’t feel that my 167 cancer was bad enough to be at Cancer Wellness, because I don’t have a port. I don’t have to go 168 sit in the chemo room and I don’t have to have radiation. I take chemo pills every day. So, I felt 169 that I’m taking up someone else’s, someone’s space that could really use it. So, I talked to Mo 170 and I talk the people (sic) in mindfulness, ad they were like any cancer is bad. Any cancer and 171 technically, your cancer is worse than mine because mine will be over soon and yours won’t. So, 172 its not that one is worse than the other. Its not that mine isn’t good enough to be here, but I 173 learned that in that room. There were like five or six different people telling me don’t feel that 174 way. Don’t feel that way, because I just felt guilty for being here, very-very guilty and the finally 175 hammered it into my head that look “its okay.” 176 177 (Tavari) That this place is for you. That you’re worthy of being here. 178 Right 179 180 So, it sounds like you have a lot of healthy spaces. The mindfulness class, think generally 181 coming here has been kind of a healthy or positive experience for you? 182 183 Much, Much, Much, Much, Much better yes. 184 Running head: CANCER SOCIAL SUPPORT NARRATIVES 200
185 Tavari: It sounds like you have a healthy supportive home life? 186 187 I do. 188 189 Tavari: Are there areas of your life that aren’t supportive? Are there areas of your life that don’t 190 support your process? 191 192 I don’t think so. I really don’t. I mean, there was. There used to be, but I’ve tried to get away 193 from negativity. I have a brother that is still so negative it’s crazy. I can only handle him in small 194 doses, because I’m one of those people that if you have a problem and if you’re crying, and 195 you’re upset, then I’m going to be bummed out the rest of the day. And that’s not healthy for me. 196 So, I’ve tried to get some of that away from me. 197 198 Tavari: So what’s going on with him? Are there things going on in his life that just bring you 199 down? 200 201 He’s just very negative. He’s just one of those people that; he concentrates on or he dwells on the 202 negative things in life instead of “oh, I have beautiful wife, I have a beautiful daughter.” You 203 know, he just he concentrates on the bad things. My car broke down, so I’m going to whine 204 about that all day long.” In stead of “thank you Jesus it’s a blue sky, there’s no rain, there’s 205 sunshine, you now, that’s me. I try to look at the positive things, I’ve learned that here too, but 206 he’s just like that, so its hard sometimes when you get around negative people, because face facts 207 anyone that has cancer, they’re depressed anyway. There’s some point where you are depressed 208 so its very easy to get pulled out of the positive and pulled back into the depression. 209 210 Do you feel like you have been kind of clearing you life of negative people since your diagnosis 211 or as a result of having... 212 213 I think I have especially going to the mindfulness, and the yoga, and the crafting, and everything 214 else that I do, because I can I feel the difference physically and emotionally. I feel the difference 215 between the positive energies here and I call it real life. Because I kind of, cancer wellness is 216 pretty much my life. If I’m not here then I’m at home crying, or I’m sick, or something bad. So, I 217 kind of have; I had to get rid of some of the negative to heal myself. 218 219 Tavari: So what was it like when you first got diagnosed? Where you optimistic or do you feel 220 like you kind of hit a dark place for a while? 221 222 Actually when I was first diagnosed I had just been laid-off from a job that I’ve been at for 22 223 years and I took a little pion job at a convenience store and I actually, I liked it but, but I didn’t 224 like cleaning bathrooms. And I didn’t like taking out trash. Because, that just, I was in the media 225 field. So, that was my life. SO I was KIND of already kinda’ sorta’ in a dark place and I had an 226 opportunity to go to a New Year’s party and I called in work and said I’m sick {fake coughs) 227 And they said we had to bring a doctor’s note. So, I was, of course I cursed a little bit, So off to 228 the ER I go. Wond-up in the hospital for five days. So to this day, I thank the Lord and I Thank 229 my boss. I love her to death. I talked to her quite frequently. Because if it wasn’t FOR HER I 230 might not be here today. I would not be here. Had she not told me to bring a doctor’s note. And Running head: CANCER SOCIAL SUPPORT NARRATIVES 201
231 she was being a butt and she’ll tell you she was just being a butt. Because she knew like hell that 232 I wanted to go to a party. So, I'm very very thankful very thankful. I know it’s {an} amazing 233 story and a lot of people don’t believe me. They look at me like I’m crazy, but that that’s exactly 234 what happened. There was nothing wrong with me, at all. Nothing, but my blood counts were, oh 235 my God. They were astronomical. They were like 400,000 or something. I can’t even remember 236 exactly, but, yeah, it was pretty bad. 237 238 Well, is there anything else I need to know in order to get an understanding or picture of what 239 helped you through? 240 241 What’s helped me through? Positive people, like my Dee. We need six more Dee’s here. Because 242 if it weren’t for Dee, I wouldn’t be here, because I just didn’t feel welcome at first. Because I do 243 have- had my wall up and Dee was just one of those people that reached out and pulled you in, 244 regardless. So, now I (sic) am trying to do what Dee did. Like everybody else is trying to do. But 245 it’s just the positive people that have just turned my life totally around. 246 247 So, what was up with that wall? Where did that come from? Why did you come in with a wall? 248 249 I felt like I was going to be judged. I felt, I don’t know if embarrassed is the right word, but, I 250 was sick. I didn’t want anybody looking at me saying “oh poor you, poor you,” because I've 251 never been that kind of person. So, I didn’t want.. .I'm not sure what word I’m looking for ... its 252 not embarrassed, but it’s uh, all I can think of is judged. 253 254 So, you were afraid that you would come in and everybody would.. .it would be a big pity party 255 and everybody would feel sorry for you? (Yes. Or...) Sorry for you because you are only 40 256 something? Sorry for you because...? 257 All the above. Or that everybody here was going to sit around and talk about cancer 24/7. And I 258 really didn’t want to hear it, to be totally honest. Because that’s a depressing subject. 259 260 So, since its so depressing, why did you come into “Cancer” Wellness? 261 262 (sic) Mt doctor made me. He said that’s going to be excellent for you, you’ve got to get out of 263 this funk you’re in. Just give it a try. 264 265 Tavari: Okay, but you came in wearing your armour, wearing your funk wall. (Yes) Like I don’t 266 want to be pitied, I don’t want to- want you guys to depress me more your little pity stories 267 (exactly). 268 269 Because that’s what most people think when I say I’m going to cancer wellness. They’re like, 270 “why are you going there?” It’s like, because “its my happy place.” “How is that a happy place, 271 sitting and talking about cancer all day?” Because we don’t really talk about it, I mean we do, 272 like in mindfulness, but we don’t all the time. Its sometimes that we do, but.. 273 274 But it was Dee that let you know “hey, we’re here to have fun. We’re not here to have a pity 275 party.” (Right) We’re here to get better and heal... 276 Running head: CANCER SOCIAL SUPPORT NARRATIVES 202
277 And Nancy, I love my Nancy. But those were the main to that, I mean they tied a rope around me 278 and pulled me in. Because I was like, “no, Dee. I’m not doing yoga. I’m not a pretzel.” Laughs) 279 he was like, “oh its not that bad...” and I was like “okay.” So, I tried it and I’ hooked. There’s 280 nobody better in this universe than Mo. I love that woman so much. She’s helped me inside and 281 outside of Cancer Wellness. She really has. And the people here, I don’t know if you need to 282 know all that, but the staff are amazing. Because there’s not one person here, except one person 283 you know about, that hasn’t helped me. Sharon, Maude, all of them. They’re just excellent. Y’all 284 couldn’t have gotten a better group of volunteers or aren’t they volunteers? (uh-uh, its okay) I 285 thought they were all volunteers. Y’all couldn’t have gotten a better group. You really couldn’t 286 have. And I know this isn’t for Cancer Wellness, but I had to tell you. 287 288 Tavari: No, but it is about what has been helpful to you. It’s good that there are staff here that 289 have been helpful too. 290 291 They really have. 292 293 It’s your family, it’s the participants, it’s the two friends that remain, it’s the getting negative 294 people out of your life. 295 296 It really is 297 298 It’s the positive distractions like crafting. 299 300 That’s what it really is, that’s a good word. See you know all the big words, (laughs) Yeah, 301 which has been really really awesome for me. I mean, I wish I would have had a a journal back 302 then, like I have now, because I would love to have read what I wrote back then. Because I’ve 303 literally done a 180.1 really have. I man since I’ve had cancer, I have the grand-baby, my son got 304 married, so it’s LIKE not only do you cancer, but you’re getting old because your baby’s 305 married, and you have a granddaughter, and so it like “Oh my God.” So what does Daisy do? I 306 go get tatted up. I had no tattoos, well I had one tattoo before I was diagnosed. So, that was like, 307 my way of dealing with it at first. Like, because I felt it was a death sentence. So I now have 15 308 tattoos and I had one to start with. I had no piercings other than my ears. I went and got my eye 309 pierced, my nose pierced, my lip pierced, and my tongue pierced, (sic) My doctor said “uh-huh,” 310 you better stop. That was just my way of dealing with it at first, because I... I personally felt that 311 it was a death sentence. 312 Tavari: So what was it that tattoos and piercings symbolized for you? 313 314 I can do whatever I want. I’m not going to be here long, I’m going to do everything I want to do. 315 (Tavari: Dye my hair purple?) Dye my hair purple, dye my hair pink, do whatever I want to do. 316 317 Tavari: Do you feel like you can’t do whatever you want to do NOW? Now that you’ve come to 318 terms with the fact that you’re living? 319 320 I can, but can’t, because at the same time that I have cancer I also have arthritis in my legs and 321 I’ve been to three rheumatologists and they refuse to touch me, because of the chemo medicine 322 that I’m on. They won’t touch me tilt h cancer is gone. It’s never going to be gone. So, then I Running head: CANCER SOCIAL SUPPORT NARRATIVES 203
323 have to deal with this pain and it’s a fear factor for me, because addiction runs in my family. My 324 grandpa was an alcoholic. My aunt is really addicted to pain pills. So, of course, I have pain in 325 my legs and I have cancer, “here’s you some pain pills.” It’s like “I don’t want pain pills.” Fix it, 326 you know? S, I’m having to deal with that because I’m so afraid of the addiction. So, he’ll give 327 me a prescription and I might get a refill for six months. 328 329 And you just kind of live with the pain or cope with the pain? 330 331 Uh-huh, because that fear is there. It’s genetic, so, or hereditary and I’m very very afraid. So, 332 there’s drawbacks either which way you turn. So, you just kinda have to go with it. 333 334 Anything else that has been good? 335 336 mmm... well I got Betty after I was diagnosed. (I didn’t know that. It seems like Betty has 337 always been there.) Betty and I were just. All we did was paint together before I was diagnosed. 338 339 So, how did you...how did you all meet? 340 341 Actually, she came in, she used to play lottery all the time. (Tavari: At the convenience store? 342 Yes) and yes she was like, “I need help. I need somebody to climb this ladder, and I need 343 somebody to paint.” And I was like, you know, I do have a really tough time paying my rent, 344 Working at a convenience store, so, “yeah, I’ll go work for you.” 345 346 Tavari: So, what was that like, beginning that process and telling someone, disclosing your 347 health issues? 348 349 Well, she was right there during it all. (Tavari: okay). The hardest thing through all that was 350 facing the facts that...I kind of liked the girl. (Tavari: okay). That was really really difficult for 351 me, very difficult. 352 353 Tavari: But not necessarily dealing with your health status and dating somebody new. That 354 wasn’t a problem for you. 355 356 Kinda, because number one, she’s older than me. But, number two, do you really want to get 357 involved with somebody knowing... because at that point (sic) my doctor was not sure which 358 type of leukemia I had. So, it could have been the... I call them good and bad. It could have been 359 the bad one. Where [I had] maybe six months to live. So, it was a fear. 360 361 Tavari: So do you think that in kind of dating Betty, do think it was like the tattoos an piercings 362 “I’m just got to do what I want..” (I think so) Even though this is a girl, it doesn’t matter because 363 its all temporary anyway. Right. And the point where you said “no this life isn’t temporary,” did 364 you decide “this relationship isn’t temporary?” 365 366 After I decided that I was going to leave and go date this dude that was 20 years [old], younger 367 than my son son, and I left Betty and moved in with him. 368 Running head: CANCER SOCIAL SUPPORT NARRATIVES 204
369 Then what? 370 371 I came back. (Okay). But she came over there at least twice a week. She bought me a laptop for 372 my birthday. She bought ma a tablet for Christmas and here I am shacked up with someone 373 younger than my son. So, at that point I was like, you know, I don’t need to be playing house 374 right now. I need to be thinking long-term. I’m too old for this. I’m not 15 anymore. So, I talked 375 to Betty and we worked everything out. 376 377 Tavari: Is Betty long-term? 378 379 Betty is long-term. Betty’s not going anywhere. Because I mean I have it...she has helped me 380 tremendously, because she has been the biggest part of all this, other than my cancer wellness. 381 She’s been a bigger part than my mom, and my son, and everybody else. Because I struggled 382 forever, since I’ve been on my own, since I was a single-parent and anybody that’s a single 383 parent knows its hard, very very hard on one income. So I stayed stressed out. Constantly having 384 to pay bills and having to do this and having to do that, and all of a sudden, I find Betty. I don’t 385 pay bills. I don’t pay rent. Um, all I pay is my car note. So, my disability, I’ll get us groceries. 386 I’ll buy us dinner. I don’t have that stress. I don’t have the financial stress anymore. I don’t have 387 the... “oh my God the air conditioner went out” or whatever at a rental place. I don’t have that 388 stress anymore. And, bless her heart, she is, you know, what happens if something happens to 389 her, you know, I’m not working, I’m on disability, what am I going to do? And bless her heart, 390 she’s already arranged for me to get the house, and make sure I’m getting her retirement, I mean 391 she... everything that this woman does is for me. 392 393 Tavari: Is she still working? 394 395 She is... she is, so it’s.. .sometimes I talk to God and I’m like “what did I do to deserve her?” 396 you know, maybe that’s why he gave me cancer, so I can have her. I don’t know... 397 398 DO you think that cancer has been a strange gift in a weird way? 399 400 Cancer has been... it is a blessing in disguise. 401 402 How so? 403 404 Because, before, I rushed through life, I paid bills, I did this, I did that. I didn’t stop to say, “good 405 morning Tavari, you look beautiful today. “Good morning Sharon, hey beautiful, how are you?” 406 I never did that.. I’d just be like (mouth noise) “oh, they’re here, yay.” Now I-I value every 407 relationship, every conversation that anybody, because face facts, we’re not promised tomorrow. 408 So, I live for every moment. Every moment. Every moment. Make the most of it. 409 410 Alright, thank you. 411 You are welcome. Running head: CANCER SOCIAL SUPPORT NARRATIVES 205
APPENDIX J
PARTICIPANT 5 FULL TRANSCRIPTION Running head: CANCER SOCIAL SUPPORT NARRATIVES 206
1 Tavari: I am really curious as to what has been most helpful throughout your cancer journey. 2 3 Most helpful throughout the cancer journey, I think it's my faith. I think if it weren’t for that, I 4 would have had such a difficult time. That certainly, we grew up with a strong sense of...my 5 father set out such a strong foundation for our religious beliefs and I think that-that’s the main 6 thing that has carried me through. Obviously family, friends, and all that support...yeah, if it 7 weren’t for them I-I-I do know how you get through something like cancer without having a 8 strong foundation of faith, and family, and friends that support. 9 10 So, let’s talk about your faith. Has it ben mostly through prayer or through a church community? 11 12 Um, We were raised Catholic. Every... I remember a time when it wasn’t there. We had a 13 Catholic education. And of course, you know, once you get into your 30s... in your 20’s and 14 your 30’s, you start to work, life changes, you’re not as disciplined. I would go... I would say 15 regularly, but not every Sunday and then it’s there, but it’s not; it wasn't always the main focus, 16 but it was always there. And I do pray and I always continue to pray, even on those times I didn't 17 go to church regularly. And that’s always been there. It’s just a part of me like-like the way I 18 breathe, the way I live. It’s always there. Sometimes it is more present and in the forefront than 19 others, and there were, been years where it just not has been in the forefront, but it's always been 20 present. Does that make sense? 21 22 Yes, I am just wondering too, once you are diagnosed how did your faith help? 23 24 Um, that helped because, we were always taught God will always be present. That he never gives 25 us more than we can handle. Even though we, you know, there were so many times, even prior to 26 cancel- cancer, where you’re like “I can’t do this,” ‘I don’t know how I’m going to do this,” but 27 it's just that core belief that God will always be there. That He never gives us more than we can 28 handle and He will always, always, always, be there. It’s-it’s that’s never changed. That's always 29 been true for me and that's what carried me through. And I see all the ways in which He was 30 always there to support, either through a friend, through my cousin, who sent me a card, which is 31 so beautiful. I don’t have it with me, but I love and I’ve used it. I’ve used it so many times and 32 reread it through the treatment. I took it out many times afterwards, because of having my 33 daughter with special needs. There are, that in itself is a challenge... I think that's been more 34 difficult than my cancer. So I think that helped me see my cancer in a different perspective. The 35 fact that my daughter went through it before me, it was like “I have cancer.” It’s not that I didn’t 36 care. It wasn't my daughter, so it was going to be okay. It was more overwhelming when my 37 daughter was diagnosed with it than myself. I was still overwhelmed and it was very scary time, 38 but when I had to look back, it wasn't her. It, I dealt with special needs for like, since 2003,1 39 don’t know, when I had balance it all out.. .it wasn’t... there were so many difficult moments, 40 (begins crying) then that moment. So, I sometimes I know that I never took it lightly but, looking 41 at the past it wasn’t the worst thing that had happened to me. (Tavari: You’ve climbed bigger 42 mountains) Yes-yes, I think that dealing with this the special needs, mental illness, um, dealing 43 with Ally’s, cancer I had already, like you said, climbed bigger mountains than my own cancer. 44 That helped. 45 46 What helped in coping with the special needs? Running head: CANCER SOCIAL SUPPORT NARRATIVES 207
47 48 Prayer, lots and lots and lots of prayer. And that’s it, you know, there were so many times I’d hit 49 a roadblock with her and I kept praying even though I didn't know which direction to take; I 50 would keep praying and sure enough, you know, somebody would give me a new path, I would 51 hear something, I would go a different direction, a friend, a teacher, a doctor, and I would always 52 be directed in different directions, because special needs, mental illness, it just practically tore 53 our family apart. That is the hardest thing I’ve ever done; even harder than Ally’s cancer. If, I 54 know, you can’t imagine that anything would be worse than your own child's cancer, but special 55 needs is (begins crying). 56 57 Tavari: I noticed that even when you are just talking about your younger daughter, that you are 58 very emotional. 59 60 It's just, it's so hard. (Tavari: Are you guys still struggling with it now?) Actually, right before 61 Ally got diagnosed with cancer there was a retreat that was being given at church. It was we 62 obviously, we’re Catholic, so we pray to Mary. So, it was a Marian retreat. You could either do it 63 at home or you could go and do it with a group of women. I was just like, “I can to do it home” 64 and I’ll just do it at home. And you know how, sometimes you have that nagging thought and it’s 65 like I had that nagging thought that I should do in a group. And Monday came; the group would 66 begin on that one Monday, it was umm, I don't even remember what date. It was before Ally’s 67 second cancer and I just, some thing said, you have to go to the group and I went to the group 68 and I actually met one of Bella’s teachers was there, which was, we were both surprised to se 69 each other there. And eventually, as the weeks went along and after one class we were talking, 70 and talking about Bella and her moderator was there and she happened come into the 71 conversation; and she's like “you know what?” I know somebody who works with trauma and I 72 think she can help, might be able to help you. So, she gave me the information and my husband 73 then went to meet her. To see if she would be a right fit for Bella and for us, and sure enough she 74 had, she was just five minutes from my house, (wow!) I know, who knew? She had, has already 75 worked with children with attachment disorder, which is, out of all the diagnosis that Bella has 76 that is the worst one. I can deal with everything else, but it’s the attachment disorder, which is 77 just has been horrific. Is it better? Yes, is she is her heart healed, is she feeling her feelings? No. 78 So, until she addresses those, she’ll never attach to me. So, we liked her. We were going to begin 79 our current therapy with her. When you do attachment therapy, it has to be in family. It’s just not 80 her by herself, ever, but then Ally got diagnosed, so we put that on hold. Some time in the 81 middle of Ally’s chemotherapy, I, you know it’s that voice that says “you gotta get started.” 82 You’ve gotta get started, so I did call her. Eventually we started. I think, we, last Saturday we 83 just did our seventh session with her and she's slowly chipping away at her and it's not pretty and 84 it's going to take about a year at least and/but she’s there. And once she's not afraid to feel those 85 feelings that she’s -she’s closed up and using so many coping mechanisms to tell, not to feel 86 them, I think we’re going to see such a... we’re going to see the beautiful person that I know is 87 in there. Academically, she’ll never be, reach where she should be, but that doesn't matter to me, 88 I mean, the fact, I want her to feel. I want her to be complete and she's not right now. She's, I'm 89 seeing that she chipping away at her slowly, and slowly, and it’s okay. We’ve, we’ll have her for 90 12 years in January, so what’s another year after that long? (Tavari: She has the cognitive ability 91 to understand what’s going on and what the therapeutic work is?) Yes, she understands that. She 92 was not happy when I first took her. In fact, we were, we went into the, past the waiting room Running head: CANCER SOCIAL SUPPORT NARRATIVES 208
93 into the therapy room and I think she might have been there whole of five minutes or less before 94 she ran out. And, so, pretty much the first session of therapy was just getting her from the 95 outdoors into the waiting room. And she did come back, I mean, I haven’t had in any way stayed 96 home because she doesn’t want to go, I don't have to pick her up and carry her in, not that I 97 could. She understands that her therapist can help us help her and I think she wants to help. But 98 it’s all that fear of those feelings that she doesn't want to go near. You know, but like Deborah 99 said you'll have to feel those feelings for you to be whole again, and that’s what I want for her. 100 That’s all I’ve ever wanted for her, but I think we’re on the right track. (Tavari: thank you for 101 sharing that. Can you go back to Ally’s diagnosis, or initial diagnosis, and the recurrence and the 102 the impact that’s had on you?) 103 104 Sure, she was diagnosed spring break of her eighth grade which was would have been four years 105 ago so, 2010. {1} think it was in April. Because, she had surgery on m husband’s birthday. I had 106 noticed what and those were the, I mean we had so many hard years with Bella, I pretty much, 107 when you have a child with mental disabilities and I've seen it with my friends; the child that 108 doesn't have the disabilities pretty much gets set off to the sideline, because the one that does 109 have the disabilities; just consumes every moment of every day. So, she kinda got set off to the 110 sidelines and it had been a while since I had taken them for the regular check-up. It was just 111 survival. From day, to day, to day, so I noticed she had been gaining weight and the I thought 112 you know I feed her too much pasta, you know, I took her out to walk with me. “You gotta really 113 walk. Let’s cut back on the pasta,” let’s eat something else. During that break I noticed that the 114 shape of her stomach changed, so I didn’t want to alarm her, so I went to hug her one morning, 115 but I grabbed her little tighter than usual and I felt her abdomen against mine and it was solid. 116 So, I’m like, “this is not normal.” I didn’t know what it was, but it was not normal. So I, she 117 needed to have a physical done prior to entering high school, so I scheduled that. I said you gotta 118 go get your physical. Otherwise, you can’t get into high school without that. So we went, to and 119 when the doctor, (sic) says “do you have any concerns anything going on?” I said, “yeah, that 120 stomach’s too hard.” So, they did a urine test. They came back and I-I had no idea, I was totally 121 blindsided by the doctor and she looks at Ally and she’s like “Ally, is there anything you’d like 122 to tell your mother?” And she’s like, nooooo. And she’s like and she looks are and says “are you 123 sure?” And she’s like, “um, the test came back positive for pregnancy” and I’m like “what?” And 124 I’m like flipping through my head thinking where’s my daughter been, who has she been with, 125 where she been? There’s no where. She's never been, you know, when we’re with family, we’re 126 all together. She doesn't stay over anybody's house and so by this time Ally’s crying and she's 127 upset and just looking at me saying “mom, I don't know.” You know, so I pulled the doctor out 128 and I said “I don't know what it is, but my daughter is not pregnant. So, within like half an hour, 129 we were here at the hospital. They did an ultrasound on her and it showed the tumor. It was huge. 130 So, it was just within, I think, I took on Monday and that that very same week she was in 131 surgery. It was...I forget how many pounds... it was just massive, the tumor inside of her. It was 132 an ovarian tumor. It was attached to her right ovary. It was still in as sack, so the doctor, her 133 surgeon cleaned the area. Later on, we went to see the oncologist and we discussed the options 134 and after he looked at different tests, looked at the results of everything, he's, he, he didn't 135 recommend chemo, because it was some intact and in the sack. And he said, if it should come 136 back we can detect it immediately and then we can do the chemo. So she'd been getting her 137 regular checkups, I think it was every three months, eventually it changed to every 6 months, and 138 we had already gone into the area where they send you for survivor-survivor area. Do all the Running head: CANCER SOCIAL SUPPORT NARRATIVES 209
139 paperwork, had gone there, and she was doing her last checkup with the oncologist and this-this 140 June right after she graduated from high school and the scan showed something and they 141 reschedule the MR! and the MRI showed a tumor, which was originally thought to be on the 142 remaining ovary. A couple weeks afterwards the surgery showed that it... when the surgeon lifted 143 the ovary it wasn't attached the ovary. (It was not?) Was not, it was attached to the colon. So they 144 closed her up, she consulted with the oncologist, and then it was decided that she would have to 145 do chemo to see it would just be taken care that way and it was. Thank God. It has been, her MRI 146 after her chemo treatment showed everything clean. And she’ll do a follow-up laparoscopic 147 surgery on the 11th of December to see, to confirm what the MRI shows. So that’s where we 148 were, that’s the next step, and then she’ll follow-up again for another five years. Regularly, and 149 um, you know, it was hard, but again, you know, (cries gain) 150 I’m sorry, usually you when you-you-you have to get her through. I kinda just put everything on 151 the side, so I don’t think about it. So you can just do what you have to do during that time. But, 152 um, like I told her, “you know, I-I can't take it away from you.” I can’t, there's, I mean 153 physically, “I couldn’t take it away from you, but I know I can ask for prayer and I can pray.” So 154 I emailed everybody I knew. All my family, thank God we have a large family. And I just asked 155 for prayer constantly through the whole time and I-I have no idea how many people were praying 156 for Ally. I know that she was on many churches, not just Catholic, all faiths, on the prayer list. 157 We had friends, family on the East Coast, all our family on the West Coast, and friends who 158 have friends that I don't even know, but their like have a friends praying for her. Our good friend, 159 he had his sister in Brazil praying for her. She’s like, my sister wants you to know that we’re 160 praying, their praying for her. That’s all I could do as her mother, I’m like, you know, God’s 161 heard and He's been there absolutely for us. And I’m like in the midst of all the mast of the 162 chemo, the testing, surgeries I’ve... there's always been this strong sense of peace. Their peace 163 that has just carried us and kept us in a good place when we were trying to help her through this. 164 So, its faith. 165 166 How do you think all this had impacted your marriage? 167 168 Actually it’d brought us closer. You know, beginning... even the mental illness, which in almost 169 tore apart. We were pretty much on the verge of divorce before we-we brought, before we 170 figured out what it was, the attachment disorder. And you know, we had ups and downs through 171 that whole time. I think the turning point was, you know, Ally’s first cancer, my cancer, and then 172 Ally’s cancer again. It’s definitely brought us closer. I guess it could definitely do the opposite, 173 but it hasn’t for us. I know it brought us closer. It’s brought us closer as a family to God, 174 definitely. You know, I think we’re definitely better after it than before it. 175 176 How old was Bella when you started getting, what sounds like a gamut of diagnoses? 177 178 We brought her home when she was 3 Vi. I think it was three years before she was diagnosed 179 with ADD and, you know, they gave her one medication and she was finally able to sit in her 180 desk at school. But, I kept telling my husband, “there’s something else.” It's just not that, I mean, 181 I couldn’t hold her, she like to be hugged, she never, she rarely, she never came to me. She never 182 came like to hug me, or kiss me, or anything. It just didn't feel the same way as it did with Ally. I 183 mean, had I not had Ally, I probably wouldn’t have known different or noticed that the 184 difference. So we kept looking and looking...we kept going to the psychiatrist. Finally a Running head: CANCER SOCIAL SUPPORT NARRATIVES 210
185 teacher... what grade was she in? I don’t remember what grade she was in, it was the end of the 186 school year and her teacher, her special ed. teacher, which absolutely got her she said “I have a 187 friend who went to seminar” I think it was (sic) N.T, I don’t know if it was (sic) N.T had given it 188 or somebody associated with her, and she gave me a list about this thing called attachment 189 disorder and-and I could check every single one of them off and I’m like “that's-that's” her. 190 That’s what it is. It finally had a name. 191 192 Is it RAD? It sounds like RAD. 193 194 Yes, it’s RAD. So, it had a name and I-I found some therapist here in, umm, I forget where they 195 were (sic) here. Because they worked as a team with the RAD therapy and we took her there, we 196 did the initial treatment, which was like a week and it's like “oh my gosh” if I thought things 197 were bad they were a nightmare afterwards. Every day we came back home, I mean, she was out 198 of control in the car. She’d spit, kick, whatever she could at us. It was a nightmare getting her 199 home because it brought out things in her that that she didn't feel. And I remember after one of 200 the sessions, we were there, because first they would talk to us, and then we went to the therapy 201 together, and they would talk to us. She was never... you can’t do therapy alone with them. She 202 cried. I’d never heard a cry like that. It was like a wounded animal. It was the saddest thing I’d 203 ever heard. So sad, it didn’t even sound human. So we did that for a while and then it seemed 204 like we had.. .it just stopped. We weren’t going any further, um, so we didn't go back and 205 continue. We kept, you know, she was still on the medication for the ADD. She was, umm. I 206 think she was in fourth grade when she had her last psychological evaluation through the school 207 and I think then they diagnosed her with mild autism. She had already been.. .okay, the ADD, the 208 RAD, the sensory dysfunction, the...and then the mild autism. I didn’t care... other three, yeah 209 they were there, but it was the RAD that was front and center, the worst. So at that point we 210 decided, oh, prior to that they tried services away from her. During our end of year IEPs, I didn't 211 know what to do, but I did understand that less services were not going to help her. So I didn’t 212 know what to do, thank God, I was talking to a friend, our little mother’s group. 213 214 Our RAD mom’s group and she’s like, you know, there’s an interesting psychiatrist. I talked to 215 my psychiatrist and she ended up helping me out. She said “Dr. X” mentioned an advocate and 216 gave me her name and number should I ever need her for school purposes. She gave it to me, I 217 called her, it was end of year, she was like “if you can get all this paperwork to m e...” she goes 218 I-I’ll make time to be there for you. So she did. They do not like for you to take advocates. I 219 could tell the whole feel of the meeting was totally different. We had consulted prior to her 220 showing up, and she said “I’ll do all the talking.” She goes “we already know what we're doing.” 221 She GOES, “I’m going to wear them down until they give us what we need.” And she did. We 222 were there for, I don't know, how many of the first session we had to come back a different day, 223 because it wasn’t finished. We were there for hours and they weren’t budging. They were not 224 budging and she finally said.. .because she had email that I had saved from a new special 225 counselor that told me that Bella was not receiving all her services on the IEP and that's a legal 226 document. When she pulled that out they were like, we need a break. We’re going to take a little 227 break and they came back and their tone was completely different. They offered services that I 228 had no idea where available for my daughter, because they never made me aware of them. They 229 were there. They didn't just appear that day and I was I was the tone was different, I got more 230 than I ever expected, I got more than what they were trying to give get take back from her, and I Running head: CANCER SOCIAL SUPPORT NARRATIVES 211
231 was I was disappointed and angry too when I left, but that was just for a moment, because I’m 232 like, I had to bring you here for them to treat me different. Prior to her coming, you know, they 233 treat you as somebody who doesn't know what your rights are, because you don't. And they take 234 advantage of that. So, it was disappointing. I never quite felt the same about the... not 235 teachers...there were some really good teachers there that always supported me and that would 236 always let me know when Bella wasn’t getting what she should, but they would always asked 237 that I not name them, because they didn't want to get in trouble with the county, but/and I never 238 did, but they were very very helpful. They were always looking out for Bella and making sure 239 that she was receiving what she was supposed to. So a that point we decided, umm, after we got 240 autism diagnosis, we decided that for fifth grade they were just nothing to meet her needs and we 241 would be wasting another year in the public school system. So at the very same time there was 242 this Clearwater Academy; I thin it was just about a year old, maybe two of the most. We went to 243 visit it. We liked it. It was {a} very very small school. I don't even think they had 10 students 244 when Bella went in and she was the only girl for a few years and it's been a good fit for her. If 245 anything, you know, academically I don't know, you know, I'm not sure if it could be better or 246 not but she's learning social skills. You know, she's-she's I think learned how to be a better 247 person, even though not necessarily with me, because I'm the mother and she has the attachment 248 disorder with me, but with others around her. She’s in a work program to get her into the 249 community, teaching her how to... what you should expect to get a job. In which hopefully at 250 some point she can get some kind of employment. You know, she is going to be limited, but they 251 want to kids to be out in the community so the community will get to know them and maybe out 252 of that they will get some employment in the future. We’ll see. 253 254 So, Bella was the closed adoption/ the orphanage? 255 256 She was the orphanage adoption. 257 258 And did you know what her history was, her trauma history in particular? 259 260 Well, that’s a different story, but we were-we were directed to the orphanage, because we 261 initially had gone to an orphanage which ended up being a Catholic orphanage, but they said 262 they would-we could never do an adoption there, because we were American and the divorce rate 263 in America was too high and they wouldn’t give us a child, even though we already had one. 264 But, well, they didn’t care. So they directed us to this other orphanage, forget what their religious 265 affiliation, and eventually you know we were given Bella. They picked, you don't pick. You can 266 pick sex, but not the child. We went to for our first visit, which we needed to do prior to the 267 adoption and we met her. You know, until look back in retrospect, your like, “oh my gosh, I 268 knew then but I didn't-I didn't pause”. {1} remember the doctor at the orphanage; we were sitting 269 there my husband left for something and I was with Bella and he came up to us and he’s like, 270 “she's a very special child.” And for a moment something in the way he said it didn't sound right, 271 but in the very same moment, I-it-it went, but I never forgot that, but I was in love. I had, you 272 know, we had our baby, I was in love, and I didn’t pay any attention to it. About a week later 273 they faxed us and-and told us basically in a fax that.. .um... we think your daughter's 274 retarded.. .umm... and some I forget what... she has seizure when she was less than a year and 275 they thought she was retarded, but they didn't tell us then. They already knew. There's no way 276 they found out in five to seven days she was retarded. So that's what they told us. We were upset, Running head: CANCER SOCIAL SUPPORT NARRATIVES 212
277 obviously, because we had just been there, you know, like the week before and they never 278 mentioned it. My husband was furious. He’s like “we were there. They knew. They didn't tell us. 279 They chose not to tell us.” And I said, “yeah,” so, I-I personally couldn't say, you know, I don't 280 want this child she's broken or not right and let's try again and have another one. So I told my 281 husband, you know, if you, I, no pressure you-you need to decide for yourself if we move 282 forward or not. I-if we- if you don't want to do it, I won't do it, but I cannot go back and start all 283 over again to try to get one that’s well or not normal. Normal, whatever normal is, I just-1 just 284 couldn't... I think it was my faith again, how do I say “God, I don’t want what you are giving 285 me, because it's broken, and it's not right, and it’s not normal,” and “give me one that's okay?” I- 286 I couldn't. I just-1 just couldn’t go there. And he took some time, and he’s like, “okay, well, let’s 287 go ahead and do it.” And we did it? 288 289 Did you all have her assessed for MR? 290 291 We took her to the Marcus Institute. I think it was within the first year we came here. You 292 know, we took her to the doctor, they did testing for lead and I don't know what else. They did 293 say, if I remember correctly, they did say she was mentally retarded. 294 295 And, so that was by age four? 296 297 Yes, but you know what? I didn’t care the being mentally retarded, autism, the sensory issues, 298 you know, it's the RAD. It's the RAD that's been the worst thing ever. I can handle the others. 299 They don't even compare to the attachment disorder, but I think we’re in the right direction and 300 I-I see it and I feel it when I'm around her. Every time you leave the therapist, even if she's mad. 301 Our last session she even, she other than cussing out the therapist, you know, she hit her and 302 she's was trying to hit me. We were, we eventually moved up close enough where the therapist 303 was on her right {and} I was on her left and that she was trying to hit both of us initially. 304 Eventually she allowed me to hold her hand and-and she was coming to me, you know, trying to 305 get away from the therapist. Pushing her way she was coming to me and I that was really hard 306 for her and I mean I was so proud of her. I can’t even begin to imagine what goes on in here and 307 here for her. I can only see by her physical-physical how she moves physically. How she makes 308 eye contact with me. It must be frightening for her, but every time we leave it's almost like... the 309 first time we left I thought she was just gonna blowout...at me and I was expecting the worst. 310 The very first time, but as soon as we left, she was like... it was almost like a relief, like (sighs) 311 “I something out and I’m a little lighter” and its ben like that every time we’ve left. It’s just, I 312 just feel something different about her. Right after therapy it's like she’s letting by little, 313 something go. 314 315 And how often are you guys going to these sessions? 316 317 Because Ally was still finishing up therapy, we weren’t going regularly, but we're going to do it 318 weekly. Yeah, Saturday is our day. And you know, and she gone. I mean, (grumbles) she’ll 319 grumble and not say nice things about her therapist. I think she's going because, I remember 320 when Debra was saying Bella, the first session she doesn’t even look-up (head down fidgeting), 321 you know, coping and touching stuff, anything. She’s listening. I know she's listening, because 322 Debra was saying “Bella, I’ve helped other children like you. I’ve help them get better,” and Running head: CANCER SOCIAL SUPPORT NARRATIVES 213
323 when she said that she looked up and then looked down. So that-that alone told me that she 324 wants to get better and I know it. I have no doubt about her wanting to get better, but it's not 325 going to be easy. Like she told her “you are going to feel those feelings. They are going to be 326 scary. You're going to be angry and it’s not going to feel good, but we will be here to help you 327 through it, but you are the only one who can feel those feelings.” So, tat’s where we’re at. 328 329 So, what do you do with you're feelings? 330 331 I, well, when usually Bella leaves we have a few minutes to talk therapist and we’re like...I 332 pray. I still pray and it's sad to see Bella like that, but I know that the end result will be worth it. 333 It's hard to see her struggle with her self. When I know she's there. She's in there, because I’ve 334 glimpsed her in those very few moments where she’s just let her guard down for and I’ve seen 335 her. I know her. So, it-it's going to be all worth it. 336 337 How old was Ally when you adopted her? 338 339 Ally was three when we brought her home. Ally’s situation was, um, my sister-in-law, who at 340 the time, lived in Guatemala she knew the... she was an acquaintance of Ally’s mother. And 341 Ally’s birth mother... Ally was her second pregnancy. She had gotten pregnant before different 342 father and she had left that son, Ally’s brother, half brother, she had left that son with her parents 343 and they’ve raised him. She got pregnant again. Different father-different man and she didn't 344 want to tell her parents. She hid the pregnancy and I-I didn't confirm with Ally's mother. I did 345 meet her during the adoption process, so I don't know, I'm not 100% sure, but when a meet her 346 again someday, because I know I will, because Ally wants to meet her. I’m going to... I know 347 where she’s at and I can find her and we’ll make that possible for her. We were told that she tried 348 to get rid of the pregnancy. So she took something, wasn't able to get rid of pregnancy, she 349 somehow got into contact with my husband's sister. She said “I have a baby, I can't keep it, do 350 you know anybody who wants it?” And she already knew that we couldn’t and she called up and, 351 you know, you’re like hear this, and you have no idea, at that time, how difficult it would be. So, 352 um, we’re like “yeah, we’ll take her. We’ll take the child.” We didn't know if it was a boy or girl 353 at the time. She was still pregnant. She had her... the... she had her the day, you know, the day 354 after my sister-in-law picked up from the hospital and took her home. The day after Ally was 355 bom, my husband had an accident, where he almost, well he did break, a bone in his neck and he 356 had be in the halo for three months. So we weren’t able to go right away until he was out of his 357 halo. We thought, we, the mother left. She just left. 358 359 Where was Ally at the time with your sister-in-law? 360 361 With my sister-in-law. So, she lived there for a year. By the time we figure out with the adoption 362 process was international, we, oh my God, we just no idea. So we actually had to locate the 363 mother. She had to be part of the process and she was willing to do that for us. She did it. She 364 showed up when she was supposed to show up. She never asked us for money. I think we gave 365 her something for her expenses when she had come back and forth to the city. We were able to 366 complete it by the time Ally was three. 367 368 So where did Ally live from ages two the first year-year-old.. Running head: CANCER SOCIAL SUPPORT NARRATIVES 214
369 370 Yes, to age three. The first year she lived with my sister-in-law. But my sister-in-law worked 371 during the day, so she had her sister-in-law watch Ally during the day. So about, when Ally was 372 about a year, my husband and I had both gone, he came back home before I did and I stayed 373 there a little longer with Ally. We were going regularly to see her. I was talking to the babysitter 374 and she told me... she’s like “like if you-if you can’t adopt her” she says “I'll take her” and I was 375 I-I-I didn't know what to say. I think I said “look you can keep her stroller, you can keep her bed, 376 but you can't keep her.” I said “if it I have to come here and live here, I will live here, but you 377 can't have her” and I don't know something just changed at that moment, and Jose’s brother, his 378 older brother, who is like a father to him because of the age difference, I don’t know how the 379 conversation came up, oh, I know because-because the babysitter wanted to keep her more. She's 380 like “you know my sister-in-law works long hours and this and that. I can keep her all week and 381 just bring her here on the weekend instead of bringing her back every day” and I was just like oh 382 my gosh, that’s not going to work. That doesn’t feel right. I don’t like that. So I was ready to 383 leave, it was the day before I was ready to leave, and I was talking to my brother-in-law and I 384 told him the situation and he’s like “I'll take her you can leave her with me” and it was like that 385 (snaps fingers). He had his his wife and two daughters. Poorest man, they had a little home and I 386 mean really, as far as material things, he, most people have almost nothing over there anyway. 387 He had very little and he took her and my sister-in-law was at home-at work and I just made a 388 decision, like that. I never thought about it, I never looked back. She says “get her things, pack- 389 up her things, we’ll drive over to my house, and she can stay with our family.” I didn’t think 390 about what my sister-in-law would think. I just knew that-that was the right thing to do, and we 391 went, and I left Ally with his family, and I came back home that night and I talked to my sister- 392 in-law and I said “I'm sorry but I-I made a decision that I thought was best for my for my 393 daughter. I know you work. I know it’s hard for you. You can’t care for her and I don't know 394 how she felt about it, but she was it, but she was, I don’t know. She was never angry about it. We 395 never had any problem between us. She's a wonderful woman and I'm grateful for her, because if 396 it weren’t for her, I wouldn’t have Ally. So, she lived there two years, while we waited for the 397 adoption to be completed and we visited her often. We made a video and we showed her our 398 home and we showed her our family and they always played it for her. We would talk to her on 399 the phone. They always told her “your mom and dad are coming for you.” They live in (sic) here. 400 They are coming for you. So she would always, when she saw plane, because they said “they are 401 coming for you, they'll be on a plane and they are come for you.” She would always, when she 402 saw a plane, she would look up and she would say “da-da, da-da,da-da.” Because she knew she 403 was going home someday and I knew she knew, because when we left the airport, and we 404 walked away, it was so hard for my brother-in-law's family and I just-I just can't imagine, you 405 know, because to him that with his granddaughter and to my nieces that was their little sister. 406 Not a cousin sister, their little sister, and more, because of the age differences its like 407 combination of daughter-sister. She never looked back. We-we went. We went through the gate. 408 She came with her little suitcase, rolled it. She never turned back. She never turned back to look 409 at anyone. She just came with us. And when we got home, and we were in the house, she went 410 up the steps and to the right to where her room was, because it was on the video and they had 411 played it so many times for her. She just went like that's her home. It was hard for her at first and 412 remember nights were hard for her, she would cry the first few days at night and it was hard for 413 me to see her cry because I knew she was missing everything that that was familiar to her; all the 414 people that were familiar to her, but eventually its just like we’re it. We were her mom and we’re Running head: CANCER SOCIAL SUPPORT NARRATIVES 215
415 her dad and I know there been times when she was young and throughout, though her life that 416 she’s asked a question here or there about her mother, about her birth mother, about whether she 417 had brothers or sisters. She has three brothers; different fathers. I from what I know she ended up 418 having a total of four children all different men; think that the last... there was a brother, Ally, 419 another brother and I think there's another son. Maybe the two, last two are related, I don’t know 420 for sure. But Ally wants to meet her someday and we told her “that’s fine.” My husband had a 421 harder time with it when-when she first asked, years back. I don't, it doesn't bother me anyway. 422 I'm her mother. I'll always be her mother. I didn’t give birth to her, but I forget that most of the 423 time. It just is not a part of me being her mother. Even with Bella, I men. I know no different and 424 even if we had-had birth children afterwards, I don't see how there would be any difference. 425 There just couldn't be. They're yours. So someday, not now, I think she’s still a little young, {1} 426 wanna wait a couple more years, and I’m going to call her. I want to meet her first. I just want to 427 make sure everything it's okay. I don't want Ally to, to umm, have a, I don't know why I want to 428 meet her first. I just want to make sure she's in a good place and I don’t even know if she wants 429 to meet her to begin with, but I know Ally, the last time she mentioned it she wasn't as interested 430 in meeting her birth mother as she is in her siblings, her brothers, so we’ll see. I don't know 431 where that, I'm not sure where that story will go, but someday. We’ll see. 432 433 So, how has motherhood played into your cancer journey? 434 435 (Sighs) I think that was the hardest part about having cancer. You know, because you start to 436 think of, you know, before you know you know, I was diagnosed him with the 90s I was in 437 surgery, you have a lot of time, you have a short period of time to think about a lot of things. 438 You know, before they take it out and you don't know what they're going to find, how serious it’s 439 going to be, and I start thinking about “they’re so young.” I-I wasn’t afraid for me, because it’s 440 eventually we all have to go there. We all die. I don’t want to leave them that long, I mean so 441 young. Especially Bella, (begins crying), because I’m like, you know, she already has a hard 442 time with her birth mother who abandoned her and then I'm telling her “I’m here, I’m your 443 mother, I’m not leaving you,” and what if I do? How, you know, how devastatingly would that be 444 for her? Whether she could express it or not and you know, Ally just-just being, you know, 445 through those teenage years are already so difficult and your just got school, you’ve got peer 446 pressure, your not a kid. You’re not and adult and then to lose your mother, I didn’t want that for 447 them. I didn’t want that to happen. Yeah, that was difficult. The cancer, for myself, didn’t scare 448 me, because most of my life was behind me. I mean I hope I have lots more, obviously, but 449 umm, I’ve had a good life. But, t was for them. It was mainly for them. It was scary. I did not 450 want to leave them, not so young. 451 So, you had surgery? 452 453 I had surgery. I had a complete hysterectomy. I had a total of three tumors; taken out and then I 454 had the six rounds of chemo. (No radiation?) No, just chemo and actually, the first three weren’t 455 bad. I’m like “okay, I can do this,” you know, oh boy, was I wrong. As, the more you 456 accumulated in your body it just, was worse and worse. Your more tired, you can't eat, I was 457 okay until I think the-the fifth one where I no longer could drink enough water, because it tasted 458 like metal. I had to force myself and then I was getting dehydrated. So I was coming back into 459 the hospital, you know, after chemo to get it what they called a jumpstart, just some fluids and I 460 would go home and I would feel great, but then it, I would get dehydrated again. I couldn’t get Running head: CANCER SOCIAL SUPPORT NARRATIVES 216
461 enough water in my body. The neuropathy was painful. The, either your constipated or I lean 462 toward the side of constipation, that was awful. No amount of water helped that, but you know, 463 those things pass. And there, you know, it was just a process and I'm blessed to still be here and 464 healthy, as far as I know, and then still be here for my girls and I remind myself when you get 465 those days, when you’re stressed at work, or running around, the kids want, you know, they need 466 you to take them here, they want you to take them there. Then I'm like, when I have that moment 467 when I’m like “oh, there’s all this to do.” Then I’m like,” no, I’m here to do it. Thank God I’m 468 here to do it for them.” So life takes I a different perspective. Those things that you thought were 469 harder, or difficult, or stressful, you have to think “but I'm here.” I can still do those things for 470 the girls and for my husband and I can work. And I can... it does change things. 471 472 How did you balance those treatment side effects with raising your daughters, being a wife, 473 working? 474 475 I'm fortunate to have the flexibility that we are self-employed, so that took care of work. I went 476 in when it could and when I couldn't, I was tired and especially as the treatment went on and on, 477 I could do less and less. My husband is wonderful. I don’t know how he held it together. He 478 must've cried in his own time, because he was always strong for me (begins crying). But, seeing 479 Ally go through chemo and how hard it is, I don’t know how he did it. I don’t know how he did 480 it, because in front of me, he was always strong. He took over.. .he took over everything. You 481 know, he has a cousin here who live close by. She was such a great help. It's good to have a large 482 family. Even with all family, you know, visiting and friends always, you know, encouraging me, 483 but she was wonderful. I ‘11 always be grateful to her. I can't prepay any of that back. My 484 husband was going to be at the hospital by himself when I was in surgery and she-she told him 485 the night before I think, she says “I’m going with you and your not going to be there by 486 yourself,” and I was so grateful that she did she took turns with my husband. She’s stay a night, 487 so he could come home and be with the girls. I have a niece; I don’t know how she was able to 488 stay her house. I the she had taken, I don't know, I have my niece who was staying at home and 489 when my husband was not at home, and oh yeah, and then the other niece was staying home too. 490 So we got the girls covered that way. When I came home, my cousin, my husband’s cousin, my 491 cousin; she would come to my house clean the house, make our dinner, so my husband could just 492 focus on me and the girls. We had people at work who would take over most of my husband's 493 work, so he could take care of me, take care of the girls. As far as getting the girls up the 494 morning and getting Bella, I was and I did all that. I couldn't get out of the bed at 5:30 in the 495 morning anymore, so my husband became Bella’s primary caregiver, which then he received all 496 behavior she used to give me every morning and I could hear it. I could-I could see how she 497 treated him the way she would treat me, but I couldn't help. He took over everything. Then about 498 six months later, let’s see September was surgery. I think it was about in May. April-May when I 499 was starting to feel a little better. And I said “I got it, you know? I can get up now. I can get the 500 girls going, get Bella” and because, pretty much she had, I was no longer her main target, he 501 was, so I relieved him of that, but he took care of everything. So I-I couldn't ask for more. I had 502 family who came in and helped us at home. Work was doable, because we-we had the flexibility 503 and we had people who could take more on. So my husband could take care of us and I couldn’t 504 have asked for more. I don't know how people do it without family. 505 506 Were there other family members? Other than your cousin and nieces? Running head: CANCER SOCIAL SUPPORT NARRATIVES 217
507 Yeah, my husband, my-my brother, who would go and pick up the girls from school whenever 508 we needed. Somebody was always doing something. 509 So you guys have a large family here in Georgia? 510 511 Yes, my siblings are here... I’m from LA, bom, raised in LA but we’ve lived here since ’91. 512 (okay, and you said your siblings were helpful as well?) 513 514 Yes, and you know if they want there then I have my brothers, one of my brothers was always 515 calling me. “How are you doing?” Or drop by, somebody was always calling, sending a note, 516 making a phone call, and all that, you know, just keeps you going. So, I remember one friend 517 especially, would the always send a card like on regular basis. “Just checking-in. Just thinking 518 about you. We’re praying for you” and I remembered that and I remember how much it helped 519 me to open that card see somebody’s praying for you, somebody's thinking of you, so now I 520 remember when I knew somebody who’s sick and while they’re sick; I do-I’ve done the same 521 thing, because you need that. You need that encouragement. 522 523 Were you doing that before your diagnosis or is it something you appreciated as a result of your 524 diagnosis? 525 526 No, absolutely something that I appreciated, because I went through it and I have different friend 527 who, going through Ally’s cancer, you know, she-she talked with Ally. She gave her 528 encouragement, in the beginning, but because she's a mother who went through her son's cancer, 529 she understood, because she started to send me cards “I’m thinking of you, I love you guys, I’m 530 praying for you, you’re on my mind” you know, because she was seeing it from a parents point 531 of view and I’m like she understood, because I needed that too, because we’re trying to hold it 532 together and stay focused for Ally and do what we need to do, but she was thinking of me. So I 533 remember that. 534 535 And when you're going through it do you feel like your husband was the person holding it 536 together and staying focused for you? 537 He was. Yeah, I told him that “I loved you before, but I love you so much more now, because of 538 it.” It changes. When people ask about him and I’m like “you know what? We got married and 539 he promised to take care of me through sickness and in health, he kept his promise.” 540 541 Did you guys meet in L.A? 542 Yes. 543 And how long have you been married? 544 This coming July will be 30 years. 545 Okay, it’s a lifetime. More than half your life. 546 547 It’s more than half my life. It's hard to remember a time without him. He’s a good man. I know 548 people see us and because he has this like, tough exterior, they don’t see what I saw. (The ewy- 549 gooey center?) Yeah, he's a good man. Yeah, he’s a solid good man. 550 551 You said the things that really helped you get through were first and foremost, your faith... 552 (absolutely)... and having that peace in trusting God, (uh-huh) and he’s not going to give you Running head: CANCER SOCIAL SUPPORT NARRATIVES 218
553 anymore than you can handle, (yeah) and He will light the way for you, (yeah, absolutely, that’s 554 exactly it) and then also your family.. 555 556 Friends, constant encouragement, “thinking of you, I'm praying for you,” and I think all that all 557 that prayer, all that prayer, I know I received then and we receive through Ally, because I do 558 recall when I was going through it. I had this like, such a strong sense of peace and clarity, and 559 all that. My body with mess an absolute mess. But because everything else had stopped around 560 me, like my normal path of my life of work, of children, of going to work, picking-up kids, 561 making dinner; all that literally stopped. So, there was this time, this so much quiet time, which 562 led to a lot of clarity and it- it was I-I keep, I don't forget what it was like because it was so 563 peaceful and I-I loved that feeling. It was, I don’t know how to explain it. 564 565 Tavari: What created that space for you? The fact that your husband had taken over some of 566 those responsibilities? 567 568 A lot of it that allowed it, I think was that I didn't have the responsibilities I had before. He took 569 over everything and with his cousin who came in, I didn’t even cook, because I couldn't. I was so 570 tired. I was sick, (so you were just focus on your healing) Yeah and you know, prayer and 571 thought and there was not much else to worry about. Your everyday life that you have to do. It 572 was a very, for me, it was a very beautiful.. .it’s hard to, you know, you have cancer, but at the 573 time, it was a very beautiful time for me. Spiritually, even though my body was an absolute 574 mess. I know, it's like you have two opposites. I even know how to explain. I don’t even know if 575 I’m explaining that right, but I know what it was and I know what it felt like and I haven’t 576 forgotten what that felt like and eventually, yeah, I got back into my routine and that-that got 577 further and further away, that feeling, but I have forgotten what it felt like. And I almost, it 578 became stronger when we were with Ally; only because I had a lot of time with her. I spent, you 579 know, three, for the three treatments; we spent five days in the hospital. It was not much to do 580 there. You know, just being with her and being with your own thoughts. So it came back, not full 581 extent, but I got some of that back. In that area it was such a beautiful time. I don't know, I don't 582 know how I got that.. .1 don’t know, well it’s God. It’s God, you know, surrounding me with 583 peace for that time. I don’t know how else to put {it} into words. 584 585 I’m just curious as to whether or not you can find that peace more frequently in your life now 586 and have time for yourself. 587 588 Yes, I'm making more time for me, because prior to Ally being diagnosed and it was, I think it 589 was no accident that I went that Monday to do that Marian retreat, because I know-I know now 590 looking back that God was preparing me for what was coming, because during that Marian 591 retreat I was regaining that same kind of sense of peace, because we were, you know, you did 592 your reading, you did your prayers, I was spending more time in prayer then I had been. So I 593 was-I was regaining that-that same kind of feel that I had during cancer treatment. And it was it 594 was great, because I was in {a} good place. When we got the news that Ally had cancer, because 595 it was, it, it was so hard hearing when its your kid. When it’s you own child. I was even that hard 596 when I heard it was about me, but when it was Ally and you don't know, you know, are they 597 going to be able to cure it? Or not. That was difficult. 598 Running head: CANCER SOCIAL SUPPORT NARRATIVES 219
599 Do you feel like you were more in control of your own diagnosis as opposed to Ally’s was 600 outside of you? 601 602 Yeah, you could say that, because I knew-I knew what I was going through and I knew I'm a 603 mom and I’m going to get through this and I’m going to put up with whatever my body has to 604 take. But, you’re looking at your daughter and you...it helped to know what she was going 605 through, but at the same time not, because I couldn’t take any of that away. And I knew how 606 awful it is and the things it does to your body and I couldn’t take any of that away from her. All 1 607 could do was hold her and say “it’s going to pass. It’s going to be okay. You’ll get through it. It 608 won't last forever. You’ll get better.” And, you know, that sense of peace and that sense of calm, 609 I don't forget it and I know that if I take time for me, which I’m doing more often now, and I 610 have to have my time of prayer or else I feel like I’m further away from that place of calm and 611 peaceful, because all this things keep going on around you; your life, problems, stress, whatever. 612 But if I have that little time for myself, it’s okay and those things are going to get worked out. 613 They’ll pass and you’ll figure them out. They’ll go on. 614 615 Did you know that prior to your diagnosis or the experience? 616 617 No, no because I had not, you say your prayers, go to church, I was going through the motions, 618 but I wasn’t really...maybe I wasn’t as present in prayer. Just going through the motions, what 619 you've done since you can remember, because it was all always our life. You went to church, you 620 just, that’s something you did. But not really experiencing it at a deeper level. So that’s what 621 cancer has done. That’s what mental disabilities have done. I guess, good things have come out 622 of our... the cancers, you know, raising Bella, and I'm grateful. I wouldn't change raising Bella 623 for anything. I mean there were times there that I would cry, I would pray, I’m like “I cannot do 624 this.” You know, you might well, obviously you know, I it wasn't always like... I had arguments 625 God and I complained, I’m like I can’t do this, I don’t think I can do this,” and-but it’s a process, 626 because you’re like “I don’t want to this.” It went from “I don’t want to do this, I can’t do this, 627 okay, if you think I'm the one for to do this than please help me and guide me” and then you get 628 to a point of surrender. I got to the point where “just use me, whatever you need for her, that you 629 need through me, just use me.” But, you know, at least give me some kind of guidance for it. So, 630 it is an entire process. I see that now. It's hard to see when you're going through it. So that's yeah, 631 I and I really I-I don't share it, you hear, with everybody else, because that's just, if it comes out, 632 you know, it just couple people that I know my-my RAD moms that we, you know, my little 633 group of friends, because they know. You know, for the longest time I would never tell anyone 634 what happened in our, what would happen, what was happening in our home with Bella, because 635 who would believe it? Who would believe that a four-year-old-five-year-old would have such 636 force? When they’re coming at you in full rage? No one would believe it. I will admit, if I 637 weren’t living it, I would not have believed it. And you tell moms with whatever normal is, with 638 typical kids, I think it would be hard to believe, that you see them and they look really sweet. 639 ‘Cause all the kids I know with RAD look really cute. They look really sweet, but that's one of 640 the wonderful things that has come out of RAD. It’s, I have these wonderful friends. Um, they 641 are not friends, we call each other sister-friends... and I think that's one of the gifts that I 642 received because that... (that community). Uh-huh, we've known each other now for at least 643 seven-eight years. So, yeah, we’re more families than friends now, because we've seen our kids 644 and all of them; their children are no longer at home. They’ve either left their homes or I have Running head: CANCER SOCIAL SUPPORT NARRATIVES 220
645 one friend gave two of them back, because they were just so dangerous. But, umm, I don’t think 646 that’s going to be our story. 647 648 Tavari: It doesn’t sound that way (No) do you attend any...do you have any cancer specific 649 support groups that you attend as a result of Ally’s diagnosis or your own? 650 651 No, you know, I remember coming one time here, when you had the, when I started to come, I 652 think it was after a cooking class or something and I never forgot the lady with the bone cancer, 653 the one that had her leg removed. She was so upset, and I’m like, I felt out of place, because I 654 was-I was happy. I was just happy to be alive, happy to still be here with my girls, and I-I didn’t 655 know what I could give. I mean, she was just... I guess a hug, I guess that would've been 656 enough. I just, I felt like I was too, I just felt out of place, because I was too happy, that I was 657 still alive and I was still here. But I remember Dee, that’s where I met Dee. Yeah, I love that 658 woman. She {was} so full of life. But yeah, no, I don't go anywhere. Just God and me. 659 And family. 660 And Family. 661 And friends. 662 Is there anything else that’s helped you? That’s supporting you? 663 664 No, that’s basically it. Faith, family, friends...and good doctors. Yeah, the ability to be able to 665 get to-to and have medical care, obviously. And not worry about that. That we’re insured and we 666 can go and we can get the help we need when we need it. Yeah, obviously that’s one thing I don't 667 have to worry about that other people do and aren’t as fortunate. 668 669 Now, you all have a small business, so do you have a group plan? 670 671 Uh-huh, yeah, we do, so, I'm sure they’ve paid out a lot more than we’ve paid in with our three 672 cancers. Yeah, I forgot, that's one less thing that we didn’t have to worry about. But, I don’t 673 know what else to say. That’s it. It’s simple. (Oh, it’s not simple, but...) I mean looking back, 674 not going through it. Absolutely, not simple going through it. So, I don’t know. 675 676 There’s nothing else. 677 No, there’s nothing else. That’s it 678 679 Okay, then,Thank you. 680 Thank you. 681 Running head: CANCER SOCIAL SUPPORT NARRATIVES 221
APPENDIX K
MERCER IRB APPROVAL Running head: CANCER SOCIAL SUPPORT NARRATIVES
firr- c 1> f*t* t*I\ i*i$* Snt.r;*?<~Fx
22-Jul-2014
Ms. Tavari T. Brown Counseling and Human Sciences Administration 1400 Coleman Avenue Macon, GA 31207-0001
RE: Perceived Social Support as a Mediator for Increased Coping among Cancer Patients and Survivors (H1407195)
Dear Ms. Brown:
Your application entitled: Perceived Social Support as a M ediator for Increased Coping among Cancer Patients and Survivors (H1407195) was reviewed by this Institutional Review Board for Human Subjects Research in accordance with Federal Regulations 21 CFR 56.110(b) and 45 CFR 46.110(b) (for expedited review) and was approved under Category 6, 7 per 63 FR 60364.
Your application was approved for one year of study on 22-Jul-2014. The protocol expires 22-Jul-2015. If the study continues beyond one year, it must be re-evaluated by the IRB Committee.
Item(s) Approved: New Application
Please complete the survey for the IRB and the Office of Research Compliance. To access the survey, click on the following link: http://https://www.surveyrnonkey.com/s/K7CTTSR Respectfully,
Ava Chambliss-Richardson, M.ED., CIP, CIM M e m b er Intuitional Review Board Mercer University IRB & Office of Research Compliance Phone (478) 301-4101 Fax (478) 301-2329 ORC [email protected] Running head: CANCER SOCIAL SUPPORT NARRATIVES
APPENDIX L
INFORMED CONSENT Running head: CANCER SOCIAL SUPPORT NARRATIVES 224
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1 itle: rc;ccivcd social support as a mediator tor increased coninu resources amonn cancer patients surv iv m > Student Principal Investigator: favari T. Ilriwn. M.P.H., M.A, I.APC
introdugtion/Backgroand/^urr.oxe: Y on are being asked in participate in our research stud> capturing lire essence of your cancer experience, I am investigating this topic to iearn more about tiie ways in which patients and survivors process his or her cancer experience through a narrative process. Your participation in the research stud' is va/nntarv. Your participation should take no more than I '/: hours for over 2-3 individual interview sessions. There will he approximately ! s participants in tilts study. Be lot c agreeing to he pan of this study, please read the following 111 It >i iikit h>ii C»IICi u!i) .
Procedures: If vou participate in this study, you v.il! he asked to participate in 2-3 interviews regarding your cancer-related story, experience, perceptions, thoughts, the interview's wiii be scheduled at a time and location of vour convenience. 1 (he only requirement is that u he in a place that allows lor audio-recording and minimal interruptions.
Risks: 1 here tsa possibility that leilecting upon your cancer experience may bring up negative memories. The intent oi the study is tor you to share your experience at the level of your comfort. II vou do feel uncomfortable, you have several options. You can choose not to answer certain questions. You can take a break and continue later, or you can choose to not finish the interview. If you experience distress as a result of vour participation in this study, we encourage you to seek help at die Mercer i 'Diversity C iumscJmii C cnicr. BemTits: As a result of your participation in this research study, you may gain additional insight into your experience with cancer, coping shills, and support system. W hat we learn Irom the study may help us to better understand the experience oi individuals living with a cancer diagnosis.
Voluntary Participation and Withdrawal: Participation in research is entirely v oluimiry. Y ou have the right to refuse to be in this study. If you decide to tv in the study :md change your mind, you have the right to drop out ai any time. You may discontinue participation at any time. W haicvcr you decide, you will not lose any benefits to which vou are otherwise entitled. Confidentiality; 'Ac will keep your records private to the extent allowed by law. You will r.oi I* asked to supply any identity ing information m the study. Participants will he assigned a study number ill the outset ol the studv. Nii record will he kept matching your name to your study number. Your name and other facts that might point to you wiii not appear when we present this study or publish its results. The findings w ill be summarized and reported in group form. You will not be identified personally.
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‘ illv: Pctccived .social support as a mediator lor increased coninu resources among cancer patients surv ivors Student Principal Investigator: I avari T. Broun. M.I'.H.. M.A. I Al’C
introdticrton/Backgrountl/Purposc: 'i ou are being asked in participate in our research study capturing the essence ot your cancer experience. I am investigating litis topic to team more about tiie ways in which patients and survivors process his or iter cancer experience through a narrative process. Your participation in the research studs is w h ttu u r v . '.’our participation should take no more than I hours for over 2-' individual interview sessions. There will he approximately I > participants in this studv. Before agreeing to he part o fthis study, please read the follow mg Info: motion carefully.
Procedures; If vou participate in this study, you will be asked to participate in 2-3 interviews regarding your eanccr-rciatcd story, experience, perceptions, thoughts. The interviews wiii be scheduled at a time and location of your convenience, i i be only requirement is that it be in a place that allows tor audio-recording and minima} inlet ruplions.
Risks: ! here :s a possibility that icllecting upon your cancer experience may bring up negative memories. The iutvui ol the study is for you to share your experience at the level o f your eomlort. If you do feel uncom tollable. you have several options. You can choose not to answer certain questions. You can take a break and continue later, or you can choose to not finish the interview. If you experience distress as a result of your participation in this study, vvc encourage you to seek help at the Mercer I miversity (. OUnsCiiuLi C CiiiCr.
Benefits: As a result of your participation in this research study, y ou may gain additional insight into your experience with cancer, coping skills, and support sy stem. What we learn from she study may help us to better understand the experience oi mdiv I duals living w ith a cancer tiiaunosis.
S'ultintarv Participation and Withdrawal: Participation in research is entirely voluntary. You have the right to refuse to be in this study, if you decide to he in the study and change your mind, you have the light to drop out at any time. You may "discontinue participation at any time. Whatever you decide, you will not lose any benefits to which vou are otherwise entitled. Confidentiality; We will keen your records private to the extent allowed by law. You will not Ik-asked to supply any identity mg information in the study. Participants will be assigned a study number at the outset ol the studv. No record will be kept matching your name to your study number. Your name and other facts that might point to you wiii not appear when we present this study or publish its results. The findings will be summarized''and reported in group form. You will not be identified personally.
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