What Do I Do Now? - 2

2
Contents
SECTION/CHAPTER
INTRODUCTION
1
2
WHAT THE C?!?
3
4
PAGE
SO, YOU HAVE CANCER. NOW WHAT? ....................................................... 3
WHAT'S DIFFERENT ABOUT HAVING CANCER AS A YOUNG ADULT? .... 4
CANCER 101 ................................................................................................. 5
WHAT STAGE IS IT, DOC?............................................................................. 6
5 WHY ME? ....................................................................................................... 7
6
7
8
GENETIC AND FAMILIAL RISK .................................................................... 8
GETTING THE RIGHT INFO (GOOD GOOGLING) ....................................... 9
9
COMMUNICATING WITH YOUR TREATMENT TEAM AFTER
DIAGNOSIS ................................................................................................. 10
QUESTIONS YOU MIGHT WANT TO ASK YOUR DOCTOR ....................... 12
10 PROCEDURES AND TESTS ........................................................................ 13
11 CENTRAL LINES ......................................................................................... 16
TREATMENT PLANS
12
TREATMENT OPTIONS .............................................................................. 19
13 DO I HAVE TO? MAYBE I NEED A SECOND OPINION? ............................ 20
14
RESEARCH AND CLINICAL TRIALS .......................................................... 21
15 ROADMAPS, CALENDARS AND SCHEDULES .......................................... 23
16 WHO'S THE BOSS? DO YOU GET TO MAKE DECISIONS? ....................... 24
17
LIVING IN THE STICKS .............................................................................. 25
GET ME ORIENTED
18 WHO IS THAT PERSON? (WHO'S WHO?) .................................................. 26
19A COOK CHILDREN'S MEDICAL CENTER ONCOLOGY;
IMPORTANT PHONE NUMBERS ............................................................... 28
19A COOK CHILDREN'S HOSPITAL; INPATIENT CARE ................................... 29
19A COOK CHILDREN'S ONCOLOGY CLINIC AND
INFUSION ROOM; OUTPATIENT CARE ..................................................... 30
19B FWAYA UNIT AT BAYLOR SCOTT AND WHITE ALL SAINTS;
IMPORTANT PHONE NUMBERS ............................................................... 31
19B FWAYA UNIT AT BAYLOR SCOTT AND WHITE ALL SAINTS:
YOUR HOSPITAL ROOM ............................................................................. 32
20
HOSPITAL ORIENTATION (INPATIENT CARE) ......................................... 33
21 OUTPATIENT CARE AND INFUSION ......................................................... 34
22 URGENCIES AND EMERGENCIES ............................................................. 35
SIDE EFFECTS AND SYMPTOM MANAGEMENT
23
24
SIDE EFFECTS INTRODUCTION ................................................................ 37
PAIN ............................................................................................................. 38
25 HAIR LOSS .................................................................................................. 39
26 WEIGHT LOSS (LOSS OF APPETITE) ........................................................ 41
27 WEIGHT GAIN ............................................................................................. 42
28 NAUSEA AND VOMITING ........................................................................... 43
29
FATIGUE ...................................................................................................... 45
30 MOUTH ISSUES (TASTE CHANGES AND MOUTH SORES) ..................... 46
31 CHEMO BRAIN ............................................................................................ 47
32
PERIPHERAL NEUROPATHY...................................................................... 48
33 CONSTIPATION .......................................................................................... 49
34
35
DIARRHEA ................................................................................................... 50
SEXUAL CHANGES ..................................................................................... 51
36 AMPUTATION ............................................................................................. 52
37
38
LOW BLOOD COUNTS, TRANSFUSIONS, AND INFECTIONS .................. 53
SKIN AND NAIL CHANGES ........................................................................ 55
39 STRENGTH CHANGES ............................................................................... 57
40 FEMALE FERTILITY PRESERVATION ....................................................... 58
41 MALE FERTILITY PRESERVATION ............................................................ 63
42
TROUBLE SLEEPING .................................................................................. 67
HEALTHY COPING AND STAYING WELL
43 COPING STRATEGIES ................................................................................ 69
44
EXERCISE .................................................................................................... 71
45 ORAL MEDICATION MANAGEMENT ......................................................... 72
46 COMPLEMENTARY AND ALTERNATIVE THERAPIES .............................. 73
47
48
SPIRITUALITY ............................................................................................. 74
NUTRITION AND FOOD SAFETY ............................................................... 75
49 CREATIVE OUTLETS .................................................................................. 77
50
MEDITATION/MINDFULNESS PRACTICES .............................................. 78
51 CONNECTING WITH OTHER CANCER PEERS ......................................... 80
52
PLAYING THE CANCER CARD ................................................................... 82
SECTION/CHAPTER
PAGE
LIVE YOUR SOCIAL LIFE WITH CANCER
53 WOMEN'S SEXUAL HEALTH ...................................................................... 83
54 MEN'S SEXUAL HEALTH ............................................................................ 86
55 DRUGS AND ALCOHOL .............................................................................. 89
56
SAFE SOCIALIZING .................................................................................... 90
57 OTHER WAYS TO PREVENT INFECTION .................................................. 91
58
RELATIONSHIPS
60
TELLING PEOPLE ....................................................................................... 94
61 COMMUNICATING EFFECTIVELY WITH FRIENDS AND FAMILY ............ 95
62
63
64
FRIENDS ...................................................................................................... 97
PARENTS ..................................................................................................... 99
SIBLINGS ..................................................................................................101
65 ROMANTIC RELATIONSHIPS ..................................................................103
66
TELLING YOUR KIDS ................................................................................105
EMOTIONAL HEALTH
67 EMOTIONAL HEALTH INTRODUCTION ..................................................106
68
69
FEELINGS ..................................................................................................107
DEPRESSION ............................................................................................109
70 ANXIETY....................................................................................................111
71 BODY IMAGE .............................................................................................112
72
73
74
LIVE YOUR LIFE WITH CANCER - PRACTICAL
76
79
SCHOOL + STUDY ....................................................................................120
77 WORK (FMLA) ...........................................................................................122
78
AFTER
81
INSURANCE ..............................................................................................124
FINANCIAL ISSUES ..................................................................................125
80 DECISION MAKING/LEGAL ISSUES........................................................126
TRANSITIONS ...........................................................................................128
82 SURVIVORSHIP ........................................................................................129
83 WHAT DOES REMISSION MEAN?............................................................130
84
85
86
87
GETTING BACK TO NORMAL ..................................................................131
RELATIONSHIPS AFTER CANCER ..........................................................134
SCANXIETY AND FEAR OF RECURRENCE .............................................135
LATE EFFECTS..........................................................................................137
88 ADVANCE CARE PLANNING ....................................................................138
89 WHAT IF CANCER RETURNS? .................................................................139
90
IF TREATMENT DOESN'T WORK .............................................................141
RECAP
91
RECAP .......................................................................................................143
RESOURCES
92 ADVENTURE CAMPS ................................................................................144
92 ADVOCACY, EDUCATION, RESEARCH ....................................................144
92
BEAUTIFICATION .....................................................................................145
92 BOOKS, BLOGS, AND PODCASTS ...........................................................146
92 CAREERS AND EMPLOYMENT ................................................................147
92 CHILDHOOD CANCER ..............................................................................147
92 CLINICAL TRIALS .....................................................................................147
92
92
92
92
92
DISEASE SPECIFIC RESOURCES ............................................................148
FINANCIAL AND LEGAL ...........................................................................149
NUTRITION ...............................................................................................149
PEER CONNECTION .................................................................................150
SELF-ADVOCACY ......................................................................................150
92 SUPPORT GROUPS ...................................................................................150
92 SURVIVOR AND CAREGIVER RETREATS ...............................................152
92 WELLNESS ................................................................................................152
93
ACKNOWLEDGMENTS .............................................................................153
LOSS OF CONTROL ..................................................................................114
GETTING SUPPORT .................................................................................116
GRIEF AND LOSS ......................................................................................118
75 COPING WITH A LOSS .............................................................................119
PIERCINGS AND TATTOOS ........................................................................ 92
59 NAILS .......................................................................................................... 93
What Do I Do Now?

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