W. Chandler author rings up riveting tale in new book about living with a disease with no cure

West Chandler author Anne McAuley Lopez’ new book title, “We Don’t Get to Ring the Bell: My CML Story,” comes from chemotherapy patients who, when they complete treatment, get to ring a bell. With no known cure for chronic myeloid leukemia, which she has, “We don’t get to do that, because we have to take the medication until there is a cure.”

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The year 2016 was a landmark year for Anne McAuley Lopez, for better and worse. In March, she had gotten married, having gotten engaged the September before. During the hectic six-month run up to her wedding, she often didn’t feel well.

“I thought it was exhaustion,” she said. “I had really bad anxiety.”

She was also bruising easily and losing her hair.

Soon the 43-year-old Chandler resident, a successful professional writer and online content provider, would learn that she wasn’t just suffering from exhaustion and wedding jitters. In the summer of 2016, just months after her wedding, she visited a naturopath, and then a hematologist-oncologist, from whom she received a test called a BCR-ABL. This detects a blood-cell mutation that indicates a rare blood cancer called chronic myeloid leukemia.

Some five years later, McAuley Lopez has published a book about her experiences with the disease: We Don’t Get to Ring the Bell: My CML Story.

“The title comes from chemo patients who, when they complete a course of treatment, get to ring a bell,” she said. “We don’t get to do that, because we have to take the medication until there is a cure.”

Chronic myeloid leukemia is seriously rare. Per the American Cancer Society, it accounts for about 0.05 percent of all new cancer diagnoses in the U.S.

McAuley Lopez got the disease young. The average age to be diagnosed is 64. There is, as yet, no known cure. Managing the illness consists of daily chemotherapy in the form of a pill.

Difficult as this prospect is, McAuley Lopez notes that until fairly recent years there wasn’t even a treatment.

“Prior to the late 1990s, (CML) was fatal,” she said. “It was about a two-year diagnosis.”

This changed with the development of a drug called Gleevec (Imatinib), which was approved for use in this country in 2001 and was featured on the cover of Time magazine in May of that year.

Needless to say, the challenges of CML have been life-altering for McAuley Lopez. A Stratford, Connecticut, native and a graduate of the University of Connecticut with a degree in Economics, she had been enjoying an active career as a copywriter and blogger, writing for hire on subjects like marketing, real estate and travel and supervising web content for a variety of clients. CML required her to put these pursuits on hold.

“There’s definitely a sense of finding balance in all of it,” she said. “It’s been a balancing act with my business.”

This balance appears to be paying off. The treatment has been effective, recently allowing McAuley Lopez to return to work part time. She looks forward to fully resuming her career.

“I’m feeling more like my old self than I have in a while,” she said. “I’ve shown zero percent leukemia for almost four years, and normal blood work for a year and a half.”

The low point of her journey, she says, “was a weekend where I was on the couch, in pain, called (the doctor) on Monday, didn’t get a call back.” She called again on Tuesday, telling them the pain, a stiffness from her hips to her knees, was so severe that she was thinking she might “stop taking the pills, and just die.”

She was talked out of this idea, happily.

And the high point?

Her answer is immediate: “Getting this book done!”

For that, it really seems like McAuley Lopez should get to ring a bell.

We Don’t Get to Ring the Bell: My CML Story by Anne McAuley Lopez will be available on Amazon on Wednesday, December 15, for $9.99.

 

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