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"I don't know what to say" and "I don't know what to do" are common responses to a life-threatening diagnosis. Voices of Cancer is here to help.
Every cancer story is different, but there is one commonality: both patients and the people supporting them often struggle to properly articulate their wants and needs through particularly challenging and in many cases, uncharted territory. Lynda Wolters knows firsthand: she was diagnosed with stage 4 terminal mantle cell lymphoma in August of 2016.
Voices of Cancer offers a candid look into the world of a cancer patient, informed by Lynda’s own story and conversations 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.
Read an Excerpt
Cure Is a Four-Letter Word
Once you’ve had a cancer diagnosis, being “cured” may be an unreachable goal. And the fear never goes away.
“Remission is a lesson in guarded optimism rather than magical thinking,” is a line I read from a blog post by Steve Jacob, a consultant for Baylor, Scott & White Health, who was describing remission, and I appreciated it immediately.
The word “cure” is often misconstrued as “remission” and, conversely, remission is often thought to mean cure. Unfortunately, those words are mutually exclusive and can be painful when misunderstood or misused.
Remission is essentially classified as either partial or complete. At its truest level, it means there is no evidence of active cancer at the moment.
A cure, on the other hand, is defined as cancer never coming back again. That is a pretty lofty statement, since there is always a chance of relapse. Once diagnosed with cancer, being “cured” can really only be used if the person reaches their death without ever experiencing the cancer again. Therefore, “cure” is just too big a word for most of us to feel comfortable with.
As a patient who has been told there is no cure for her disease, the word remission feels like the heavens opened up and the angels sang; it really doesn’t get much better. Cure, however, feels like a pipe dream, out of reach and inconceivable. Regardless of how long a person has been in remission, we still hold our breath during checkups and hear the whisper in our head: “Is it back?”
Before becoming fluent in the language of cancer, I thought cure and remission were interchangeable. Now I realize that remission is the only dream we have and cure lives somewhere in fantasy land.
Many patients will go in and out of remission, some more than once during their journey, and each time they have to deal with the, “But weren’t you cured?” question from family and friends. Perhaps some of this responsibility for confusion lies with the patient, and we should use language that is less confusing and more accurate, such as No Evidence of Disease (NED); No Evidence of Active Disease (NEAD); and “dormant.” A non-patient cannot be expected to understand what a sting the word “cure” can have.
About the Author:
Lynda still resides in Idaho with her husband and their peekapoo, Max.
Lynda has worked in the legal field for 30+ years and enjoys ballroom and swing dancing, horseback riding, kayaking, and river rafting. She has a heart for people and enjoys regularly volunteering. She spends the bulk of her spare time reading and writing.
Lynda was diagnosed with terminal stage 4 Mantle Cell Lymphoma (MCL) in August 2016. She touts herself as being a thriving warrior of the disease.
Lynda has completed two books of nonfiction: Voices of Cancer, released in October 2019, and Voices of LGBTQ+, released in August 2020.
The Placeholder, Lynda’s debut novel, was released in November 2022.
Lynda has published the following articles: Navigating the Workplace with Chemo Brain, February 23, 2020, Elephants and Tea. and When Masks Weren’t Popular, March 24, 2020, Patient Power. She has spoken on several podcasts, been a guest on a local talk show regarding Voices of Cancer, and given interviews for other outlets and print.
Jane Brody wrote up Voices of Cancer in the New York Times, her article entitled What to Say to Someone with Cancer, on January 13, 2020, with a follow-up on January 20, 2020, entitled, When Life Throws You a Curveball, Embrace the New Normal.
The Chinese translation rights of Voices of Cancer have been purchased by a grant to offer the book to medical students in Tawain.
Lynda donates Voices of Cancer books and a portion of its proceeds to Epic Experience, a nonprofit camp for adult survivors and thrivers of cancer located in Colorado.
Facebook page: https://www.facebook.com/lyndawolters1
HARD COPY: https://www.amazon.com/Voices-Cancer-What-Really-Want/dp/1645430391/
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