So Much to Be Done : The Writings of Breast Cancer Activist Barbara Brenner

“What kind of cancer is it?” was the first question Barbara Brenner asked her doctor after hearing that the lump in her breast was malignant. His answer: “You don't need to know that.” Wrong response. Brenner, who was already an activist, made knowing her business and spreading knowledge her mission. The power behind Breast Cancer Action and its transformative Think Before You Pink® campaign, Barbara Brenner brought an abundance of wit, courage, and clarity to the cause and forever changed the conversation. What had been construed as an individual crisis could now be seen for what it was: a pressing concern of public health and social justice, with environmental issues at the center of prevention efforts. Collected in So Much to Be Done, and framed by personal accounts of Barbara and her influential work, Brenner’s columns and blog posts form a chronicle of breast cancer research and health care activism that is as inspiring as it is informative. As she takes on the corporate forces at work in breast cancer research and treatment and in the “pinkwashing” of fund-raising for the cause, Brenner, a self-described hell-raiser, contends with cancer herself, twice, and her words offer understanding and encouragement to all those whose lives are touched by the disease. When Brenner was diagnosed with ALS in 2011, she broadened her critique of health care while also writing about her own experience. Infused with her characteristic moxie, humor, anger, and compassion, these reflections from her last two years provide an in-depth, precisely observed portrayal of what it is to live with a terminal disease and to die on one’s own terms. Collected In The Book, And Framed By Personal Accounts Of Barbara And Her Influential Work, Brenner{u2019}s Columns And Blog Posts Form A Chronicle Of Breast Cancer Research And Health Care Activism That Is As Inspiring As It Is Informative. As She Takes On The Corporate Forces At Work In Breast Cancer Research And Treatment And In The ?pinkwashing? Of Fund-raising For The Cause, Brenner, A Self-described Hell-raiser, Contends With Cancer Herself, Twice, And Her Words Offer Understanding And Encouragement To All Those Whose Lives Are Touched By The Disease. When Brenner Was Diagnosed With Als In 2011, She Broadened Her Critique Of Health Care While Also Writing About Her Own Experience. Infused With Her Characteristic Moxie, Humor, Anger, And Compassion, These Reflections From Her Last Two Years Provide An In-depth, Precisely Observed Portrayal Of What It Is To Live With A Terminal Disease And To Die On One{u2019}s Own Terms.--provided By Publisher. A Portrait Of Barbara Brenner / Barbara Sjoholm -- Introduction: Barbara Brenner, Breast Cancer Action, And The Birth Of A Politicized Breast Cancer Movement / Rachel Morello-frosch -- Part I. Building A Movement, 1995-2010. Hope, Politics, And Living With Breast Cancer -- Loss And Inspiration -- Let Them Lick Stamps -- Fiddling While Rome Burns: The Latest Mammogram Controversy -- Reflections On A Handmaid's Tale -- Words Matter -- My Sister's Keeper -- Educate, Agitate, Organize--now! -- One Pill Makes You Smaller... -- Thinking Out Loud: Toward A New Research Strategy -- Rolling The Dice -- Respecting The Past, Creating The Future -- Making Choices -- Living On The Edge -- Breast Cancer Treatment: Promise Versus Reality -- Exercise Your Mind -- The Crazy Days Of Autumn -- Lessons From Long Island -- Waging War, Making Connections -- Solving The Breast Cancer Puzzle: Advancing The Research Revolution -- Forests And Trees: Reflections On Pink Bracelets And Narrow Visions --^ Fifteen Years Of Activism: Standing On Many Shoulders -- Era Of Hope, Hype, Or Hoax: Is It Time For Change In The Dod Breast Cancer Research Program? -- Meaningful Results: Getting What We Need From Science -- Bca's Survey On Aromatase Inhibitors: Meeting The Needs Of Patients -- Moving Beyond The Personal In Environmental Health -- Putting Patients First: The Need For Better Standards At The Fda -- The Organic Process Of Activism: Think Before You Pink®, Then And Now -- Breast Cancer Awareness Month: The Present Looks Like The Past -- So Much To Celebrate, So Much To Be Done -- Part Ii. Thoughts On Dying And Living, 2011-2013. Don't Ask Me How I Am -- Patient? Who's Patient? -- Don't Make Promises You Can't Keep--especially In Health -- Isn't It Time To Change The Message? -- Uncertainty, A Teaching For Rosh Hashanah 5771 -- A New Name -- Passover -- There's That Person With . . . -- The Obligation Of Privilege -- Can And Can't List -- That's Why They Call Them Trials --^ People's Lives As The Endpoints Of Medical Research--now There's A Nifty Idea -- Understanding Health Numbers: Not Easy, But Important -- Having A Voice, Communicating, And Somewhere In Between -- Walk For Your Health, But It Won't Help Anyone Else's, Much -- Thoughts On Dying And Living -- How Do You Spell Chutzpah? K-o-m-e-n -- Drug Development And Access: Time To Act Like Lives Depend On It -- Science By Press Release--not Good News For Patients -- Health Activism--not For The Faint Of Heart -- Pink Ribbons And Lou Gehrig: Time To Bury Useless Symbols -- Mi Shebeirach: Thoughts On Illness And Blessing -- Is October Over Yet? -- Labyrinth -- Iom Report On Breast Cancer And The Environment: What Komen's One Million Dollars Bought -- Gloves Off: What The Fuck, Komen? -- Yosemite -- Smith College Medal -- Context Is Everything: Framing The Film Pink Ribbons, Inc. -- Choices: How I Live With Als -- Thoughts On Leadership--listen Up, Nancy Brinker -- Point Reyes --^ Changing The Culture Of Health Care In A Consumer Society--not So Easy -- Whatever Happened To Previews Of Coming Attractions In Health? -- Susan Love: Time To Think Before You Pink -- Who Shall Live And Who Shall Die? A Yom Kippur Reflection -- Nbcc: The Promise, The Process, And The Problems -- Winter Weather -- What I Learned As A Volunteer -- January 19, 2013 -- February 11, 2013 -- Thanks And Blessings -- Afterword / Anne Lamott. Barbara Brenner ; Edited By Barbara Sjoholm ; Introduction By Rachel Morello-frosch ; Afterword By Anne Lamott. Includes Bibliographical References And Index. MuPDF error: syntax error: invalid key in dict MuPDF error: syntax error: invalid key in dict MuPDF error: syntax error: invalid key in dict MuPDF error: syntax error: invalid key in dict MuPDF error: syntax error: invalid key in dict MuPDF error: syntax error: invalid key in dict MuPDF error: syntax error: invalid key in dict MuPDF error: syntax error: invalid key in dict MuPDF error: syntax error: invalid key in dict Cover 1 Contents 6 A PORTRAIT OF BARBARA BRENNER 10 INTRODUCTION: Barbara Brenner, Breast Cancer Action, and the Birth of a Politicized Breast Cancer Movement 22 PART I. BUILDING A MOVEMENT, 1995–2010 34 Hope, Politics, and Living with Breast Cancer 42 Loss and Inspiration 45 Let Them Lick Stamps 49 Fiddling While Rome Burns: The Latest Mammogram Controversy 52 Reflections on a Handmaid's Tale 57 Words Matter 60 My Sister's Keeper 63 Educate, Agitate, Organize—Now! 66 One Pill Makes You Smaller . . . 68 Thinking Out Loud: Toward a New Research Strategy 72 Rolling the Dice 75 Respecting the Past, Creating the Future 78 Making Choices 82 Living on the Edge 86 Breast Cancer Treatment: Promise versus Reality 90 Exercise Your Mind 94 The Crazy Days of Autumn 98 Lessons from Long Island 102 Waging War, Making Connections 106 Solving the Breast Cancer Puzzle: Advancing the Research Revolution 108 Forests and Trees: Reflections on Pink Bracelets and Narrow Visions 111 Fifteen Years of Activism: Standing on Many Shoulders 113 Era of Hope, Hype, or Hoax: Is It Time for Change in the DoD Breast Cancer Research Program? 116 Meaningful Results: Getting What We Need from Science 120 BCA's Survey on Aromatase Inhibitors: Meeting the Needs of Patients 124 Moving beyond the Personal in Environmental Health 126 Putting Patients First: The Need for Better Standards at the FDA 128 The Organic Process of Activism: Think Before You Pink®, Then and Now 132 Breast Cancer Awareness Month: The Present Looks like the Past 135 So Much to Celebrate, So Much to Be Done 137 PART II. THOUGHTS ON DYING AND LIVING, 2011–2013 140 Don't Ask Me How I Am 148 Patient? Who's Patient? 150 Don't Make Promises You Can't Keep— Especially in Health 153 Isn't It Time to Change the Message? 156 Uncertainty, a Teaching for Rosh Hashanah 5771 159 A New Name 162 Passover 165 There's That Person with . . . 168 The Obligation of Privilege 171 Can and Can't List 175 That's Why They Call Them "Trials" 177 People's Lives as the Endpoints of Medical Research—Now There's a Nifty Idea 180 Understanding Health Numbers: Not Easy, but Important 183 Having a Voice, Communicating, and Somewhere in Between 188 Walk for Your Health, but It Won't Help Anyone Else's, Much 191 Thoughts on Dying and Living 193 How Do You Spell Chutzpah? K-o-m-e-n 196 Drug Development and Access: Time to Act like Lives Depend on It 200 Science by Press Release—Not Good News for Patients 203 Health Activism—Not for the Faint of Heart 205 Pink Ribbons and Lou Gehrig: Time to Bury Useless Symbols 208 Mi Shebeirach: Thoughts on Illness and Blessing 212 Is October over Yet? 218 Labyrinth 223 IOM Report on Breast Cancer and the Environment: What Komen's One Million Dollars Bought 225 Gloves Off: What the Fuck, Komen? 230 Yosemite 235 Smith College Medal 238 Context Is Everything: Framing the Film Pink Ribbons, Inc 241 Choices: How I Live with ALS 247 Thoughts on Leadership—Listen Up, Nancy Brinker 251 Point Reyes 255 Changing the Culture of Health Care in a Consumer Society—Not So Easy 258 Whatever Happened to Previews of Coming Attractions in Health? 261 Susan Love: Time to Think before You Pink 264 Who Shall Live and Who Shall Die? A Yom Kippur Reflection 267 NBCC: The Promise, the Process, and the Problems 272 Winter Weather 275 What I Learned as a Volunteer 277 January 19, 2013 281 February 11, 2013 283 Thanks and Blessings 285 Afterword 288