Decision Making

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.

For more information click here
 

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.

For more information click here
 

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.

For more information click here

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.

For more information click here

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

Living with Graft-Versus-Host Disease: How I Stopped Fighting Cancer and Started Healing by Brad Buchanan, PhD
Published by Armin Lear Press, June 2021, Paperback, 189 pages (also available as e-book)
ISBN: 978-1-7371255-0-1

This 70,000 word personal narrative enriched with medical information, Living with Graft-Versus-Host Disease: How I Stopped Fighting Cancer and Started Healing, fills a huge gap in current health and wellness literature. It tells the story of the author’s survival against the odds, outlines his sometimes-rocky path to long-term recovery, and offers unique and important insights into acute and chronic GVHD.

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.

For more information click here
 

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

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.

For more information click here

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.

Cancer Crossings: A Brother, His Doctors, and the Quest for a Cure to Childhood Leukemia by Tim Wendel
ILR Press, 2018, 256 Pages, Paperback and Kindle
ISBN: 978-1501711039

When Eric Wendel was diagnosed with acute lymphoblastic leukemia in 1966, the survival rate was 10 percent. Today, it is 90 percent. Author Tim Wendel discovered that most of the doctors who cared for his brother at Roswell Park in Buffalo, N.Y., were at the forefront of this medical 'moonshot.' Tim interviewed the doctors and nurses in this effort, including Donald Pinkel, Lucius Sinks, and James Holland. Their medical advancements, as well as his brother's story, are detailed here. 

For more information click here 

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.

For more information click here
 

Having Children After Cancer: How to Make Informed Choices Before and After Treatment and Build the Family of Your Dreams by Gina M. Shaw
Celestial Arts; 1 edition, 2011
ISBN-10: 158761054X ISBN-13: 978-1587610547

When faced with a cancer diagnosis, many doctors and patients rush full-speed ahead into treatment, giving minimal attention to the potential fertility implications. Luckily, the field of oncofertility is growing quickly, and medical writer Gina Shaw, herself a cancer survivor, is ready to unravel the complex and evolving issues involved in pre- and post-cancer fertility and family-building options-for both men and women. Having Children After Cancer gives all the tools to: Understand how different cancers can affect fertility Identify which treatments?chemo, radiation, and surgery?can potentially impair your fertility Discuss fertility-sparing treatment options with your doctor Select the fertility preservation method that's right for you-from freezing eggs, embryos,and sperm to preserving ovarian tissue Analyze the chances of getting pregnant-using natural methods and with in vitro fertilization Determine the best time to get pregnant (and which drug therapies to avoid while doing so) Have a healthy post-cancer pregnancyNavigate surrogacy and what to tell prospective candidates about your medical history Consider adoption and learn about survivor-friendly adoption programs and countries Find sample medical letters and other insurance-company red-tape busting information Think through the implications of mother- and fatherhood after cancer Figure out how to talk to your children about the big C

Second Opinions: Stories of Intuition and Choice in the Changing World of Medicine By Jerome Groopman, M.D.
Penguin USA (Paper), 2001, 256 pages
ISBN: 0140298622

A Harvard Medical School professor and a cancer researcher, Dr. Groopman combines his scientific experience and communication skills in exploring how patients and their doctors make critical medical decisions. Told from the physician's perspective, the eight real-life narratives reflect the ambiguities and complexities inherent in medical science, the promise and limitations of new treatments and the current state of the healthcare delivery system.