Caregiving

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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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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The Man in the Arena: Surviving Multiple Myeloma Since 1992 by James D. Bond
Publisher: Booklocker.com
March 20, 2021, Paperback (172 Pages) and Kindle
ISBN: 978-1-64719-38-0

James Bond’s battle with multiple myeloma since 1992 is an amazing story of tenacity, hard work, and good fortune. In this book he and his caregiver/wife Kathleen share approaches, experiences, and difficulties. This book provides two acronyms he developed that summarize their approaches to surviving a deadly, incurable blood cancer.

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Already Toast: Caregiving and Burnout in America by Kate Washington
Beacon Press, 2021, 224 Pages, Paperback/Hardcover/Kindle
ISBN: 978-0807011508

Already Toast is the story of the author's struggle to care for her husband through two kinds of lymphoma and a stem cell transplant, as well as a revealing look at the unpaid labor that family caregivers provide to a society that fails to give them structural support. Combining memoir, cultural critique, and a call to action for policy change to better support caregivers, the book offers a thorough examination of caregiving in America today and a deep look at how lymphoma can affect families.

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Wife, Widow, Now What?: How I Navigated the Cancer World and How You Can, Too by Rachel Engstrom MSW, CHES
Published September 2020, Paperback, 346 pages
ISBN 979-8690475741

Wife, Widow, Now What? chronicles Rachel’s journey as a 28-year-old wife whose husband is diagnosed with leukemia, the life-altering changes they faced together, and eventually the death and dying process when her husband passes away and she is widowed at age 31.  Using her narrative along with original Facebook, CaringBridge, and Instagram posts, Rachel provides resources for caregivers on how to navigate a cancer diagnosis, treatment, insurance, disability, finances, health care directives, emotions, patient and caregiver self-care and support, and much more.  In addition, Rachel shares how she has to rebuild her life and how she learns to start over as a widow.   Includes mention of the music she listened to during her journey.

Cycle of Lives: 15 People's Stories, 5,000 Miles, and a Journey Through the Emotional Chaos of Cancer by David Richman
River Grove Books, 2020, 376 Pages
ISBN 978-1-63299-299-4 Paperback
ISBN 978-1-63299-300-7 eBook

Cycle of Lives chronicles the lives of 15 people affected by cancer, including patients, doctors, researchers, and caregivers.  These moving stories cover many aspects of a cancer diagnosis.  Readers are able to examine a wide range of experiences and viewpoints to help them grow in empathy, and to better understand how issues affect the way people deal with the traumas that shape their lives.

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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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A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death
By Dr. BJ Miller and Shoshana Berger
Simon & Schuster, 2019, 544 pages
ISBN 978-1-5011-5716-5
ISBN 978-1-5011-5722-6 (ebook)

“There is nothing wrong with you for dying,” hospice physician B.J. Miller and journalist and caregiver Shoshana Berger write in A Beginner’s Guide to the End. “Our ultimate purpose here isn’t so much to help you die as it is to free up as much life as possible until you do.”

Theirs is a clear-eyed and big-hearted action plan for approaching the end of life, written to help readers feel more in control of an experience that so often seems anything but controllable. Their book offers everything from step-by-step instructions for how to do your paperwork and navigate the healthcare system to answers to questions you might be afraid to ask your doctor, like whether or not sex is still okay when you’re sick. Get advice for how to break the news to your employer, whether to share old secrets with your family, how to face friends who might not be as empathetic as you’d hoped, and how to talk to your children about your will. There are also lessons for survivors, like how to shut down a loved one’s social media accounts, clean out the house, and write a great eulogy.

Voices of Cancer: What We Really Want, What We Really Need - Insights for Patients and the People Supporting Them by Lynda Wolters
Mascot Books, October 2019, Hardcover (160 pages) and Kindle
ISBN: 1645430391

Voices of Cancer offers a candid look into the world of a cancer patient, informed by Lynda’s own story (as a Mantle Cell Lymphoma patient) and conversations she had with dozens of patients weighing in on their needs, wants, and dislikes as they navigate the complex world of diagnosis, treatment, and beyond. With comprehensive and accessible insight from people who’ve been there, Voices of Cancer helps educate, dispel fears, and start positive conversations about what a cancer diagnosis truly means, while shining a light on how best to support a loved one on their own terms.

Know Your Enemy: A Guidebook For Your Cancer Journey by Frank Antonicelli
Be Still Publishing, 2018, 115 Pages, Paperback and Kindle
ISBN: 978-1792807398

If you or a loved one has ever been on the receiving end of this diagnosis, you know instantly that your life will never be the same. Know Your Enemy is a must-read for first-time cancer patients and loved ones on their cancer journeys. What is truly unique about this work is that it's written from the perspective of a caregiver who confronted cancer with two different loved ones. The author hopes that the book will inspire patients and caregivers with hope and a plan for what's ahead.

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How to Cope Better When Someone You Love Has Cancer By William Penzer Ph.D.
Esperance Press, 2011, 268 Pages
ISBN-10: 098350170X ISBN-13: 978-0983501701

In 2005, Dr. William Penzer, a psychologist for more than forty years, found himself sitting with his wife in the waiting room of Memorial Sloan-Kettering Cancer Center. Their 31 year old daughter had been diagnosed with breast cancer. Nothing in his life or his work had prepared him for this experience. Like a traveler in a foreign land which Dr. Penzer came to call Cancerville, this loving father and seasoned psychologist discovered the pain-filled reality of supporting a loved one who has been diagnosed with cancer. In this warm and empowering book, Dr. Penzer describes his demanding journey to help you support both yourself and your loved one.

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Passages in Caregiving - Turning Chaos Into Confidence by Gail Sheehy
William Morrow of Harper Collins Publishers, 2010, 396 pages
ISBN-10: 0061661201

This book will walk you through the emotional journey, stage by stage, and show caregivers how to outwit our broken healthcare system and keep a loved one safe and satisfied, without sacrificing their own health and happiness.

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Instructional DVD: How to Give Comfort through Touch and Massage to a Loved One with Cancer
By William Collinge, PhD, MPH 2009

A thorough and authoritative DVD program provides detailed instruction by leading experts in the field of oncology massage in safe and simple techniques anyone can learn and apply. Developed with support from the National Cancer Institute Division of Cancer Control and Population Sciences, Behavioral Research Program, Health Communication Informatics Research Branch (grant #CA103606). The instructional DVD follows 11 cancer patients and their caregivers through a workshop as they learn and practice simple touch and massage techniques together. It is especially helpful for the caregiver. Full program available in English, Spanish, Mandarin and Cantonese languages (plus optional subtitles for the hearing impaired). Researchers and institutions who would like to use the program in their own studies and projects, collaborate in development of new applications for the program, or have it produced in additional language versions are invited to contact Collinge and Associates.

100 Questions & Answers About Caring for Family or Friends with Cancer By Susannah L. Rose, MSSW, and Richard T. Hara, Ph.D.
Joans and Bartlett Publishers, 2005, 223 pages
ISBN: 0-7637-2361-4

For people who are supporting someone through the mental or physical ordeal of a cancer diagnosis, this book is a guide to the day-to-day challenges and offers numerous suggestions and support.

Charlie's Cancer Rescue By David Justus, Linda Justus
Authorhouse, 2004, 168 pages
ISBN: 1418491462

This is a book that is enjoyable and easy to read for all ages. It provides over 100 suggestions that are beneficial while facing the trials of cancer, promotes the understanding that one does have the power to change and take control, and lists the benefits of finding and participating in a support group. Charlie's Cancer Rescue also provides a very helpful nationwide list of resources from cancer-related organizations.

Caregivers' Guide for Bone Marrow/Stem Cell Transplant: Practical Perspective Edited by Myra Jacobs, M.A.; Anne Murley, M.S.W., L.C.S.W.; and Carole Slotkin, M.Ed.
National Bone Marrow Transplant Link, 2003, 59 pages

The National Bone Marrow Transplant Link has published a practical compilation of brief essays on caregiving for the transplant recipient. In the environment of increasing outpatient care, the caregiver's responsibilities have become more closely woven into the bone marrow transplant (BMT) process itself. Told from the perspective of various members of the healthcare team - oncology social work and nursing, mother and spouse of the patient as well as the patient, this booklet offers insights into the BMT caregiver role while affirming its importance.

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Chemo Sabe: A Guide to Being a Personal Advocate for a Chemotherapy Patient By Brenda L. Joyner
Polonius Press, 2003, 144 pages
ISBN: 0972918000

In addition to love and moral support, there are many practical things you can do to assist someone undergoing treatment for cancer. Chemo Sabe offers a wonderful collection of helpful hints and practical information to help caregivers to also be their loved one's Personal Advocate.

And Thou Shalt Honor: A Caregivers Companion Edited by Beth Witrogen McLeod
Rodale Press, 2002, 464 pages
ISBN: 1579545580

This encyclopedic companion to the PBS special And Thou Shalt Honor provides practical information, as well as suggested checklists and "action plans" on a wide variety of issues that challenge caregivers. Themes include reaching out to a loved one in need of help, managing day-to-day caregiving tasks, accessing public and private resources, navigating the legal and financial maze and assembling a support network. Researchers, patient advocates and actual caregivers alike share expertise, experiences and available resources.