Treatment

Beyond the Diagnosis: Surviving and Thriving with Multiple Myeloma and Breast Cancer by Makeda Tené Ekakitie, BFA, MA and Rev. Cecelia B. Johnson, MSW, LCSW, ACSW
Prime Pace Publishing, 2024, 136 Pages, Paperback, Hardcover, or Kindle
ISBN: 979-8986764054

"Beyond the Diagnosis: Surviving and Thriving with Multiple Myeloma and Breast Cancer" unfolds an inspiring narrative that transcends the boundaries of typical medical memoirs. This poignant story, told through the intertwining perspectives of Cecelia B. Johnson, a 20 + year survivor of multiple myeloma, and her daughter, Makeda Tené Ekakitie, offers a rare and insightful look into the resilience required to navigate life with a relentless disease.

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Rewriting Illness: A View of My Own by Elizabeth Benedict
Mandel Vilar Press, 2023, 216 Pages, Paperback and Kindle
ISBN: 978-1942134916

With wisdom, self-effacing wit, and the story-telling artistry of an acclaimed novelist and essayist, Elizabeth Benedict recounts her cancer diagnosis, and misdiagnoses, and doctor delays, after discovering multiplying lumps in her armpit. In sharply-paced, propulsive sentences, she tracks the progress of her illness and treatments, including her obsessive “natural remedies,” from Tibetan Buddhist chanting to shots of wheatgrass with turmeric. Benedict’s sagacity jackets her fears, which are personal, political, and ultimately global. Amidst weighty concerns of the Covid pandemic and an all-consuming obsession over the outcomes of chemotherapy, Rewriting Illness is charged with suspense, secrets, and the unexpected solace of silence.

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Four Walls: Breaking Through Life’s Challenges, One Wall at a Time: A Memoir of Battling Cancer by Ryan Scanlan
Independently Published, 2023, 336 Pages, Paperback and Kindle
ISBN: 978-8871214367

All of the blood in Ryan Scanlan’s body is someone else’s. At twenty-two years old, Ryan was diagnosed with a blood cancer called acute myeloid leukemia. Despite receiving five cycles of chemotherapy, Ryan experienced a relapse of his disease. He received two additional cycles of chemotherapy followed by a stem cell transplant for a chance at a cure. Just over two years following his stem cell transplant, Ryan began working as a pharmacist at the number one cancer center in the United States. In his memoir, he details the struggles and lessons learned throughout his journey from being a cancer patient to caring for those who suffer from cancer the same way he did. No matter the challenge he faces today, he will always remember what he learned within those Four Walls. 
 
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Why: A Memoir of Love and Lymphoma by John Melithoniotes
NFB Publishing, 2023, 278 Pages, Paperback or Kindle
ISBN: 9781953610485

There is no test of a couple’s bonds like the revelation that one of them has a life-threatening disease. One of them, a husband, wife, or partner, will become a patient who may need care from the other almost constantly. This is the story of John and Marilyn, whose love of nearly forty years encounters a diagnosis of Marilyn’s Non-Hodgkin’s lymphoma. John’s memoir describes the complexities of how they navigated their way through a large urban cancer hospital, their daily attempts to manage the side effects of chemotherapy, and their emotional struggle to cope with a worsening crisis. He revisits key scenes from their lives in the hope of understanding their actions and the surprises in store for both of them.

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Life Blood: Lessons From One Woman Who Survived Serious Illness Against The Odds by Cathy Koning
Silver Moon Press, 2021, 232 Pages, Paperback, Hardcover or Kindle
ISBN: 9780994324412

Cathy Koning's moving, unflinchingly honest and often humorous recollections and reflections chart her experience from shock diagnosis of AML in 2012 to cure and beyond. Treated at Melbourne Australia's Alfred Hospital, along the way, she deals with needle phobia, is admitted to ICU, her mother dies, she receives a donor transplant and marries her partner of 37 years. Cathy chronicles her journey for readers seeking a better understanding of what it's like to be a leukaemia patient.

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Up for the Fight: How to Advocate for Yourself as You Battle Cancer from a Five-Time Survivor by Bill C. Potts

ISBN: 9781774581681
Publisher: Page Two
September 13, 2022, Paperback (208 Pages) and Kindle
 
In this valuable patient and caregiver guide author Bill C. Potts, a five-time cancer survivor, (including lymphoma four times) tells you everything you need to know to take on this fight. With empathy and honesty, he explains exactly what to expect, and shares lessons and important tips you can put into action all the way from diagnosis, to treatment, to remission, to cure, and how to face setbacks on your road to recovery. Most important you will learn how to advocate for yourself!

For more information: www.billcpotts.com

We Don’t Get To Ring The Bell: My CML Story by Anne McAuley Lopez
Publisher: Lupi Documents & Designs
December 15, 2021, Paperback (97 Pages) and Kindle
ISBN: 978-1733956130
 
Most cancer patients get to ring a bell after their last cancer treatment, but that’s not the case for CML patients like Anne. She, and her CML brothers and sisters, take a daily chemo pill to prevent the cancer from growing. While her cancer is undetectable, that isn’t a guarantee. Anne makes the most of every day. In this book, she shares her CML experience while offering guidance and resources to other CML patients and their families. She encourages anyone struggling with CML or chronic illness to choose hope. Even if you don’t get to ring the bell, there is life after diagnosis.

For more information: www.mycmlstory.com

The Big Ordeal: Understanding and Managing the Psychological Turmoil of Cancer by Cynthia Hayes
River Grove Books, February 2021, 264 pages
ISBN 978-1-63299-335-9 Print
ISBN 978-1-63299-336-6 eBook

Nothing can truly prepare you for the emotional rollercoaster of a cancer diagnosis, but The Big Ordeal will help you anticipate and respond to the psychological turmoil ahead. Written by a cancer survivor with the help of a psychotherapist and two oncologists, The Big Ordeal presents the typical emotional experience, illustrated by patient and caregiver stories. The book explains the science behind those emotions, helping you understand why you feel the way you do, and offers advice on how to cope. The book is based on interviews with over 100 patients, caregivers, oncologists, neuroscientists, and other experts.

For more information: https://thebigordeal.com

Bone Marrow and Blood Stem Cell Transplants: A Guide for Patients and Their Loved Ones by Susan K. Stewart
Blood & Marrow Transplant Information Network, 2020, 204 Pages
ISBN: 978-1-7337268-5-6

A comprehensive and easy-to-read book that's a must for patients considering a transplant using donor bone marrow, blood stem cells or cord blood. The book walks the reader through what to expect before, during and after transplant and includes the perspective of patients and caregivers as well.

For more information: http://www.bmtinfonet.org/

CAR T-Cell Therapy: What to Expect Before, During and After by Susan K. Stewart
Published by Blood & Marrow Transplant Information Network, 2020, 26 Pages
ISBN 978-1-7337268-4-9

CAR T-cell therapy is an exciting new treatment currently approved by the U. S. Food and Drug Administration for patients with certain types of lymphoma or acute lymphoblastic leukemia (ALL). Researchers are studying whether it can help other cancer patients as well.  If you are considering CAR T-cell therapy, this easy-to-read colorful booklet will help you understand what to expect when going through treatment.

For more information: https://bmtinfonet.org/

When Blood Breaks Down - Life Lessons from Leukemia by Mikkael A. Sekeres, MD
MIT Press, April 2020, Hardcover, 328 Pages
ISBN: 9780262043724

In When Blood Breaks Down, Dr. Mikkael Sekeres, a leading cancer specialist, takes readers on a journey that patient and doctor travel together.  Sekeres tells the compelling stories of three people who receive diagnoses of adult leukemia within hours of each other: Joan, a 48-year-old surgical nurse, a caregiver who becomes a patient; David, a 68-year-old former factory worker who bows to his family's wishes and pursues the most aggressive treatment; and Sarah, a 36-year-old pregnant woman who must decide whether to undergo chemotherapy and put her fetus at risk. We join the intimacy of the conversations Sekeres has with his patients, and watch as he teaches trainees. Along the way, Sekeres also explores leukemia in its different forms and the development of drugs to treat it—describing, among many other fascinating details, the invention of the bone marrow transplant and a treatment that targets the genetics of leukemia. The lessons to be learned from leukemia, Sekeres shows, are not merely medical; they teach us about courage and grace and defying the odds.

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Braving Chemo: What to Expect, How to Prepare, and How to Get Through It by Beverly A. Zavaleta, MD
Sugar Plum Press LLC, November 2019, Paperback, 240 pages
ISBN: 978-1-7334565-0-0

In Braving Chemo, Harvard-educated physician and cancer survivor Beverly A. Zavaleta MD combines her medical expertise with a survivor’s insight to provide practical advice for both chemotherapy patients and cancer caregivers. This book will give you clear answers to your most urgent questions, such as: what to eat; how prevent nausea; and how to face tough feelings like fear of dying.  Braving Chemo is a valuable resource about what to expect during chemo, how to minimize the side effects, and how to live life as normally as possible when life itself is on the line.

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The Scars, Aligned (A Cancer Narrative) by Brad Buchanan
Finishing Line Press, 2019, Paperback 93 pages
ISBN: 9781635348514

The Scars, Aligned follows the author's journey through the many phases of a cancer patient’s experience and interweaves lines of famous poetry. He covers feelings of uncertainty, paranoia, diagnosis, acceptance, expectancy, crisis, treatment, and finally recovery. The narrative working through these poems is a powerful and universal one, but the details of an intensely lived physical and emotional ordeal make this book far more than a mere succession of unfortunate events.

Autologous Stem Cell Transplants: A Handbook for Patients
By Susan K. Stewart
Blood & Marrow Transplant Information Network, 2019, 180 pages
ISBN: 978-1-7337269-0-1

This comprehensive and easy-to-read book is for patients considering a transplant using their own bone marrow or stem cells.  It walks the reader through what to expect before, during and after transplant and includes the perspective of both patients and caregivers.

For more information click here 

Sending - An Athlete Confronting Cancer by Jennifer Erin Pinkus
Blurb.com and Dorrance Publishing, 2018
ISBN: 978-0-36-803943-0 Softcover, 178 Pages
ISBN: 978-1-6470-2653-0 Ebook

SENDING is a generic term for successfully completing a vertical rock or ice climb. Jennifer Erin Pinkus approached her struggle against cancer with the determination and emotional strength she used when tackling the most challenging mountain.  When Jen received a diagnosis of lymphoma, she decided to start a daily journal describing her experience with hair loss, “chemo brain,” metallic tastes and insurance coverage. Her talent for using the written word in prose and poetry to describe coping with this horrific illness is raw and honest. It shows Jen’s courage as she faces her fears, the unknown and finally death.

Consider It Pure Joy by Jennifer Jones Austin
Published by The Church Online LLC, February 2018, Paperback, 217 pages (also available as e-book)
ISBN: 9781940786612

Author Jennifer Jones Austin - wife, mother, lawyer, child advocate and the picture of good health - finds herself with an acute form of leukemia that requires a bone marrow transplant to increase her chances of survival.  The story recounts how Jennifer, her family and friends, are in a race against time as she fights cancer and searches for a bone marrow donor to cure her and others of the deadly disease. With scripture and bible verses, Jennifer describes how her power of faith, and her power of community, help to transform desperation into joy.

Graft-versus-Host Disease: What to Know, What to Do
Published by Blood & Marrow Transplant Information Network (2018)
42 Pages - Available in English and Spanish​

Graft-versus-host disease (GVHD) is a complication that often occurs after a transplant using cells from a donor (an allogeneic transplant).  This booklet will help you understand the symptoms of GVHD, the organs it can affect, treatment options and steps you can take to minimize the impact of GVHD on your daily life.

For more information: https://bmtinfonet.org/

Living with Cancer - A Step-by-Step Guide for Coping Medically and Emotionally with a Serious Diagnosis by Vicki A. Jackson, MD, MPH, David P. Ryan, MD and Michelle D. Seaton.
Johns Hopkins University Press, 2017, 351 pages
ISBN 1421422328 Hardcover (also available in paperback and e-book)

Doctors Vicki A. Jackson and David P. Ryan have crafted a step-by-step guide aimed at helping people with cancer grasp what’s happening to them while coping physically and emotionally with treatment.  It is a practical, easy to read and comprehensive reference covering everything from understanding one’s diagnosis to managing symptoms and side effects and dealing with end of life concerns.

For more information: https://www.press.jhu.edu/

Cancer Clinical Trials: A Commonsense Guide to Experimental Cancer Therapies and Clinical Trials By Tomasz M. Beer, M.D., Larry W. Axmaker, Ed.D
DiaMedica, 2012, 144 Pages
ISBN-10: 098232197X ISBN-13: 978-0982321973

Cancer Clinical Trials is a comprehensive, no-nonsense, and readable guide for anyone who is considering therapeutic options in addition to standard cancer therapy. The book seeks to share knowledge about cancer clinical trials with people living with cancer, their families and loved ones. It will help readers decide if a clinical trial is a good option for them, to choose an appropriate trial, and to navigate through the clinical trial process. It includes lists of questions to ask, things to look for, things to watch out for, and places to look for information. A chapter on available drugs now used to treat cancer will be especially helpful.

100 Questions & Answers About Cancer and Fertility By Lindsay Beck, Kutluck H. Oktay MD, Joyce Dillon Reinecke, JD
Jones and Bartlett Publishers, 2008 152 Pages
ISBN: 978-0-7637-4049-8

Whether you're a newly diagnosed cancer patient, a survivor or a loved one of someone suffering from infertility, this book offers help. The only book available which provides both the doctor's and patient's views, 100 Questions & Answers About Cancer & Fertility, provides practical, authoritative answers to 100 of the most common questions asked by cancer patients and survivors about fertility. Written by an Ob-Gyn/reproductive medicine specialist and cancer/fertility patient advocate, with commentary from actual patients, this is an invaluable resource for anyone struggling with the medical, physical and emotional turmoil of cancer and infertility.

One Hundred Days: My Unexpected Journey from Doctor to Patient By David Biro, M.D.
Knopf Publishing Group, 2001, 304 pages
ISBN: 0375706739

Stricken with a potentially life-threatening rare blood disease, Dr. Biro chooses to undergo a potentially curative, though potentially life-threatening allogeneic stem cell transplant, despite conflicting medical advise. Told with candor and humor, he shares his experiences of the transplant process. From the perspective of a patient who is also a doctor, he includes both the physical and the emotional impact of the transplant.