Everything Changes , livre ebook

Table of Contents
 
Title Page
Copyright Page
Acknowledgements
Introduction
 
Chapter 1 - Ramenomics
 
RESOURCES
 
Chapter 2 - When G-d Things Happen to Sick People
 
RESOURCES
 
Chapter 3 - Single
 
RESOURCES
 
Chapter 4 - Human Spectacles
 
RESOURCES
 
Chapter 5 - Malignant and Indignant
 
RESOURCES
 
Chapter 6 - Something in the Air
 
RESOURCES
 
Chapter 7 - Mortality Bites
 
RESOURCES
 
Chapter 8 - The Myth of Eternal Optimism
 
RESOURCES
 
Chapter 9 - It Girl
 
RESOURCES
 
Chapter 10 - The Fix
 
RESOURCES
 
Chapter 11 - Off the Map
 
RESOURCES
 
Chapter 12 - Naked in the Streets
 
RESOURCES
 
Chapter 13 - Fluke
 
RESOURCES
 
Epilogue: Alphaville
Index

Copyright © 2009 by Kairol Rosenthal. All rights reserved
 
Published by John Wiley & Sons, Inc., Hoboken, New Jersey Published simultaneously in Canada
 
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Library of Congress Cataloging-in-Publication Data: Rosenthal, Kairol, date. Everything changes : the insider’s guide to cancer in your 20s and 30s / Kairol Rosenthal. p. cm. Includes bibliographical references and index.
eISBN : 978-0-470-48888-1
1. Cancer—Popular works. 2. Young adults—Diseases. I. Title. RC263.R645 2009 616.99’4—dc22 2008049900
Acknowledgments
From activism to learning how to build support, to enacting healthcare policy, the cancer community owes a hefty thanks to the AIDS community for paving the way. I owe special thanks to editor Michael Denneny, whose trailblazing work in publishing the first books on HIV and AIDS cleared a path for a book such as this. I am grateful for his personal support of my project; his editorial eyes on my early manuscript were instrumental in bringing this book to fruition. Thank you to my tenacious agent, Regina Ryan, who is a champion of books that make a difference, and to my editor, Christel Winkler, who had her antennae up and knew that a book on young adult cancer needed to be written even before we met. I’m most appreciative to production editor Rachel Meyers at Wiley and freelance copy editor Patricia Waldygo for their eagle-eyed editing skills. I also want to thank my other “in-house” editor, Shannon Fisk, who gave endless close readings of this work.
I am especially grateful to the twenty-five men and women in this book who gave me carte blanche to reveal bits and pieces of their lives as I saw fit. I would not have found these cancer patients without the help of the following individuals and institutions: the Charlotte Maxwell Complementary Clinic, Beverly Lowe, Women’s Cancer Resource Center, Margo Rivera-Weiss, Celeste Whitewolf, the Ida and Joseph Friend Cancer Resource Center, Mimi Roth, the University of Alabama Kirkland Clinic, Erin Street, and Lydia Cheyne. I wish to thank Craig Newmark for creating Craigslist .org, which connected me to many of the patients in this book and to volunteer transcriptionists. I extend a gracious thank you to these volunteers: Maya Nikin, Ellen Seremet, Laura Sciortino, Karleen Chong, Lindsay Baker, Sheri Martin, Claire Rasmussen, Elizabeth Kowlaski, Amy Schoenhals, Lori Ann Spencer, Rachel Lukasavige, Jennifer Buzick, and Janelle Sosh. Thanks also to photographers Andrew Young and Michelle Kondracki, whose photos appear on the cover.
The following individuals have dedicated their careers to furthering the young adult cancer cause, and I thank them for sharing their expertise with me: Heidi Adams, Dr. Archie Bleyer, Dr. Leonard Sender, Page Tolbert, and Brad Zebreck, as well as the many experts who contributed information to the resource sections of this book. Librarians Mary Pranica and Scott Thomson from the Lurie Cancer Center, Campaign for Better Health Care, and the reference staff of the Evanston Public Library have lent hours of research assistance, for which I thank them.
I am especially thankful to Jana Vitols, Lisa Friedman, Emily Fox, Heather Phillips, Sara Braun, Lowell Brown, Chris Howland, Barbara Flood, Max Raimi, Karin Steinbrueck, Daniel Biss, Nate Burbank, and Asimina Chremos for their brainstorming, inquiry, and interest in this book. And to my extended Rosenthal, Arnheim, and Cohen family, for their continual enthusiasm about this project.
I thank the City of Chicago Department of Cultural Affairs and the Illinois Arts Council for their partial support of this project through a Community Arts Assistance Program grant.
Introduction
It is not the nitty-gritty details of how we were diagnosed or what treatments we are taking that interest me as much as what we do with our lives after the big cancer bomb is dropped in our laps. How do we think about life when we are facing death? Nonetheless, I will give you the pithy lowdown on what was happening in my life when I was twenty-seven years old, so that you can better understand who I am and why I bothered to write this book.
At twenty-seven years old, I was brimming with the muse and confusion. I lived alone in a dilapidated three-story walk-up near the foot of the Bay Bridge in San Francisco. Working at under-the-table and menial nonprofit jobs, I had a minuscule income and shoddy health insurance. I wrote stories on my fire escape until three in the morning and was sending off manuscripts, applying to graduate school, choreographing performances, and penny pinching. I was single, dating, and sleeping around. My friends were trust-fund kids, dot-com geniuses, and receptionists, and one even traded blowjobs for rent. As I was determined to find a respectable and engaging day job, my schemes for how to support myself changed weekly.
I had long thought that chiropractors were quacks; if they gave you one wrong crack, you ended up a spoon-fed paraplegic for life. But after wrenching my neck in dance rehearsal, I was in pain, and a friend who was a receptionist at a chiropractor’s office slipped me into the doctor’s schedule. After five seconds on the table, the chiropractor pulled me to my feet and hauled me in front of her mirror. She pointed to a lump on my neck, demanding, “How long has this been here?” The lump was huge, and I was stunned that I had never noticed it. She ousted my friend from the front desk and sat me down in her swivel chair. We fished through the deck of ragged business cards in my wallet, searching for the I.D. card from my bottom-of-the-barrel health insurance company. She made me call the insurance company to demand an appointment that afternoon for blood work and chest X-rays. She then packed up my belongings and ushered me out the door.
As I quickly trekked up steep San Francisco hills on my way to the BART station, everything around me melted into vivid slow motion and I felt an immaculate weightlessness I had never experienced before. It was the absence of longing and wishing. The absence of regret and fear. I realized that I could evaporate right there on the sidewalk and leave the world knowing that my life had been complete. Perhaps I’m not twenty-seven, I thought. Perhaps I’m seventy-two in disguise. I scrambled down the escalator to the train. Okay, one regret: if this is cancer, I want to stay alive long enough to get a dog.
My insurance granted me a series of ten-minute urgent-care appointments with four different doctors who declared that I had a cold, allergies, or swollen glands. Despite my extreme fear of doctors and my instantaneous loathing of the medical system, I hacked through the red tape of my big-box, managed-care facility and obtained a botched biopsy, which came back negative. Six months later, my employer, who had been unable to recruit high-level staff due to the company’s abysmal insurance coverage, switched to an HMO that allowed me to choose from a pool of doctors. I received an accurate diagnosis of stage II thyroid cancer that had metastasized to nineteen lymph nodes. I have since learned that many cancer patients in their twenties and thirties are diagnosed at more progressed stages of canc