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  • Stor

    ies B

    y Car

    c ino id

    Can

    cer S

    urv iv

    ors

    But Y

    ou Lo

    ok So

    Good

    ...

    This book shares the intimate stories of those living with a poorly understood and rare cancer. It demonstrates that enduring any chronic illness can be

    done with hope, courage, and dignity.

    M a r i a J . G o n z a l e zM S N , F N P / PA - C

    MEDICAL / DISEASES

    U.S. $19.95

    Stor ies by Carc ino id Cancer Surv ivors andthe bas ics of Neuroendocr ine cancers

    BUT YOU LOOK SO GOOD...

    This book shares the intimate stories of those living with a poorly understood neuroendocrine cancer and the time it takes to fi nd a correct diagnosis; sometimes years! The book demonstrates how those affl icted with this cancer cope with the myriad symptoms of this great masquerader cancer.

    Supported by loved ones, the valiant struggles to obtain a correct diagnosis and effective treatments will give the reader a dramatic fi rst-hand look into how our healthcare system often fails to serve each of us, regardless of illness.

    More importantly, the stories show the reader how those with this cancer cope. The book also offers information on the various types of this cancer, tests, markers, and scans relevant to NE cancer, as well as tips on how to manage symptoms, side effects of medications, complimentary alternative medicine, quality of life issues, nutrition, and coping. It offers hope, strength, and inspiration to those with this cancer, as well as to their care-givers and all involved with them.

    The author has had a rewarding career in nursing and medicine, including internal (multi-specialty clinics), primary care, and emergency medicine. She has worked in hospice and home care, and currently volunteers in a free clinic serving the uninsured and underserved.

    Previous publications include: How to Render Primary Care to Patients With Different Cultural Beliefs and Practices, a chapter on Home Care For Patients With

    Aids, a paper on herbs and other alternative therapies, poetry, and haiku. At the time of these writings, her name was Mary Jo Swafford.

    She is a neuroendocrine cancer survivor, is retired, studying to re-certify as an MD, and lives with her partner and two cats in No. California.

    BUT YO

    U LO

    OK SO

    GO

    OD...

    MA

    RIA

    J. GO

    NZ

    ALE

    Z

  • iUniverse, Inc.Bloomington

    M a r i a J . G o n z a l e z

    StorieS From CarCinoid CanCer SurvivorS

    But You look So Good . . .

  • But You Look So Good . . .Stories From Carcinoid Cancer Survivors

    Copyright 2013 by Maria J. Gonzalez.

    All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

    iUniverse books may be ordered through booksellers or by contacting:

    iUniverse1663 Liberty DriveBloomington, IN 47403www.iuniverse.com1-800-Authors (1-800-288-4677)

    Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

    Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.Certain stock imagery Thinkstock.

    ISBN: 978-1-4759-8131-5 (sc)ISBN: 978-1-4759-8134-6 (ebk)

    Printed in the United States of AmericaFirst Edition

    iUniverse rev. date: 05/15/2013

  • I refuse to live a shadow of a life that could have been.

    Michael Huskey, Life Coach www.theliferocket.com

    Disclaimer: The material in this book is intended for personal, educational, non-commercial, and informational purposes only. The author is a cancer survivor and does not intend the contents to replace ones doctors medical advice. The thoughts, wisdom, experiences, and comments do not constitute a recommendation or endorsement of any product or company. This book makes no representations and specifically disclaims all warranties, expressed, implied or statutory, regarding its accuracy, timeliness, completeness, merchantability, or fitness for any particular purpose. The reader is advised to seek and follow the recommendations made by your physician for your particular situation.

  • The Aphorism

    Zebra is a medical slang term for a surprising diagnosis.

    The term derives from the aphorism When you hear hoof beats, dont look for zebras, coined in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore, Maryland.

    Since horses are the most commonly encountered animal with hooves, and zebras are rare, one could confidently guess that the animals hoofbeats are probably those of a horse. This generally applies to diagnosing diseases as well.

    The Warning

    In diagnosing the cause of illness in individual cases, calculations of probability have no meaning. The pertinent question is whether the disease is present or not. Whether it is rare or common does not change the odds in a single patient.

    If the diagnosis can be made on the basis of specific criteria, then these criteria are either fulfilled or not.

    Sotos, John G. (2006) [1991]. Zebra Cards: An Aid to Obscure Diagnoses. Mt. Vernon, VA: Mt. Vernon Book Systems. ISBN 978-0-9818193-0-3.

    Harvey, A. M., et al (1979). Differential Diagnosis (3rd ed.). Philadelphia: W.B. Saunders

  • Contents

    Acknowledgments ............................................................................xiPreface ............................................................................................xiiiForeword ........................................................................................ xxi

    Neuroendocrine & Carcinoid Cancer ................................................1Tumor Characteristics .......................................................................3Carcinoid Tumors and Carcinoid Syndrome .....................................5Improving Quality of Life ...............................................................21Nutrition .........................................................................................32Poor Appetite / Nausea / Vomiting ..................................................35Impact of Diarrhea ..........................................................................51Complementary and Alternative Medicine ......................................58Hospice ...........................................................................................74The Steps Slowed ............................................................................78Internet Resources ...........................................................................81Survivor and Caregiver Stories .........................................................88Self Help for Managing Diarrhea ..................................................212Tips for Maintaining Weight .........................................................215Carcinoid Crisis: Prevention and Treatment ..................................217

    References .....................................................................................221Index .............................................................................................229

  • xi

    Acknowledgments

    In honor of all those living with neuroendocrine cancer and in memory of all who have gone before.

    In appreciation of the dedicated physicians who care for us as well as all who are researching pathways to combat neuroendocrine cancer. A special thank you to Drs. Adler, Eastman, Liu, ODorisio, Pommier, Pia, Woltering and Hanne Jensen Male, R.N.

    This book is dedicated to all who are living with cancer, and the caregivers who generously contributed their personal stories.

    Thank you Astrid Martin, Dal Anderson, Bill Manewal, for your generous editing, support, and guidance. Thank you Lucy Wiley for the idea for this book!

    A heartfelt thank you to all who contributed in making this book come to fruition. You know who you are, and I share my heart and thoughts as friends!

  • xiii

    Preface

    The stories you are about to read are personal journeys that allow the reader to share the path from early onset of symptoms to the eventual diagnosis of carcinoid, under the umbrella of neuroendocrine cancer. Each journey is unique as this cancer is quite uncommon, YET MOST WILL share the common bonds of misdiagnosis, confusion, and uncertainty. Many, if not most, health care providers will never see a case in a lifetime of clinical practice.

    I had practiced internal medicine and endocrinology for thirty years in a hospital based clinic and was familiar with the clinical features of carcinoid. However, despite treating thousands of patients during this time, I was unable to confirm a suspected case. That is, until Maria Gonzalez, my trusted colleague and co-worker in the diabetes and endocrine clinics described some personal symptoms that were nonspecific, such as weight loss, abdominal discomfort, and flushing.

    An intense episode of abdominal and flank pain led to a CT scan showing low density lesions in the liver and a liver biopsy was consistent with a neuroendocrine tumor. The laboratory tests supported the diagnosis of carcinoid, and she, AS A BREAST CANCER SURVIVOR, was now faced with her seco