Waldy, Myelo, & Me
Surviving Waldenstrom's Macroglobulinemia & Myelodysplastic Syndrome
by Carol Turner
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Pub Date Sep 05 2023 | Archive Date Sep 05 2023
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Description
At fifty-seven, Dr. Carol Turner was in peak health and avidly participating in the full gamut of outdoor spots that Colorado has to offer. Then, heading out to watch her sons compete in the state’s annual mountain bike championship, she pulled into a gas station, received a call from her doctor, and learned that she had cancer. She instantly knew that what was to come would have personal and universal significance, and started taking notes immediately, from the passenger seat of the car. Those notes turned into this book―a candid, unvarnished chronicle of her cancer journey, from diagnosis to recovery.
The path oscillates between denial and acceptance, hope and despair, expectation and reality, and endless appointments bookended by interminable waits. There’s a one-night descent into madness followed by a one-month descent into hell, and in the middle of it, a moment of pristine clarity in which time almost seems to stop. While there’s plenty of fear and pain here, both are trumped by the positivity, gratitude, and humor that made her recovery possible.
First we’ll meet Waldy, Dr. Turner’s pet name for Waldenstrom’s Macroglobulinemia. Then, just as it seems like the shock is clearing, his pal, Myelo―Myelodysplastic Syndrome―enters the scene. We also meet enough doctors and varied care providers to fill a small bus: Dr. Blood Expert, Dr. Know It All, Ms. Smooth-as-Silk Social Worker, Dr. Second Cancer, Dr. Gatekeeper, Dr. Good Ideas, Dr. Italian, Dr. Believer, and more. Some work miracles, while one caused our protagonist to storm out of their offices in disgust.
In turn, much of this book is about self-advocacy. As a doctor herself, Dr. Turner is less intimidated than most of going toe-to-toe with care providers and taking her care into her own hands. Though she’s a doctor, and her words are medically accurate, her writing, and the lessons it conveys, are squarely intended for regular people.
Anyone newly facing cancer will take to the internet, where they proceed through a variety of cancer sites, from cancer clinics, snake oil salespeople, the testimonies of those who survived and those who didn’t―all told, an experience that tends to give rise to fear, confusion, and overwhelm. Meanwhile, there’s the portrayal of cancer seen on TV, which bears no resemblance to Dr. Turner’s experience. This book is meant to provide a counterweight to all of the above. In the end, this book isn’t just for those facing cancer themselves. It’s for the people who love them, and the people who have dedicated their lives to caring for them―some of this book’s biggest fans are oncology care providers.
This is the story of what Dr. Turner went through, what her family went through, what she spared them from, as well as a cast of all-too-human caregivers who shepherded her along the way. In the process, she learns the measure of crucial differences. Between IgM and ANC, between hope that’s grounded in wishful thinking versus hope that’s grounded in science, and between being cured and being a survivor.
Available Editions
| EDITION | Hardcover |
| ISBN | 9781642257977 |
| PRICE | $27.99 (USD) |
| PAGES | 168 |
Links
Available on NetGalley
Featured Reviews
Lisa W, Reviewer
Thank you to Netgalley and the publisher for providing me with an ARC in exchange for my honest review.
Publication date: 9/5/23
I was surprised to find a memoir about Waldenstrom's as it's such a rare disease, and one that I also have! I was diagnosed at age 40, also a very active and athletic mom at time of diagnosis. This memoir reminded me so much of the trials and tribulations that I went through during my treatments and recovery.
I especially appreciated the author's suggestions for self-advocacy, as it can truly be the tool that saves one's life. I don't think I'd be alive today had I not advocated for a second opinion at another hospital after initial treatments failed.
I kept a blog throughout my cancer journey, mostly to keep everyone in the loop and to have a record of my treatment details. So much of this book reminded me of thoughts and experiences I had as well. I thought the author has a good sense of humor, and her writing style is very casual. I thought she did a great job explaining complex medical terms/procedures so that the average reader could understand them. I often had a difficult time explaining blood cancer terminology and felt the author did a great job with this.
A couple things that I would suggest, and of course, just my opinion... I don't love the book title--it feels a little juvenile to me, and suggests a book for younger readers. I also don't think the little quote boxes that appear throughout are necessary (these remind me of something I'd see in a magazine article). The book is short enough that I don't think key points/quotes need to be highlighted in boxes. If the author feels reiteration is necessary, I'd prefer a bullet-point recap of important points at the end of each chapter. As a person who has Waldenstrom's (basically in remission now), I had never heard the disease referred to as Waldy;.most people in the medical community and discussion forums shorten it to WM. While I believe the author can call the disease whatever she wants to, for some reason calling it Waldy felt a little juvenile. Again, this is just my opinion as someone who also has the disease.
Mostly, I was thrilled to find a memoir that talks about a rare disease, as it's so important to normalize and educate people on diseases that are not often mentioned in media. I'm so glad that the author had success with her treatment, and I hope her health stays great and that she can live the active life she desires.
Tiffany S, Reviewer
This book was very powerful. It was emotional and sad while being positive and upbeat! (Which is powerful- right?)
As a health care provider I haven’t worked with oncology patients during their treatments. Reading about what these patients go through via this author (and physician) was very eye opening.
I hear “transplant” and usually think of a solid organ transplant. I have never heard a story about a stem cell transplant- which sounds like one of the hardest experiences someone could go through.
I encourage everyone to read this book. Even if you are a health care provider, you have something to learn.
Advocate for yourself, ask questions, no side effect/ symptom is too mild to mention.
Readers who liked this book also liked:
Jodi Picoult; Jennifer Finney Boylan
General Fiction (Adult), Literary Fiction, Women's Fiction
