May 29, 2024

We Don’t Get to Ring the Bell: Interview with Author Anne McAuley Lopez

Hello, CLRA Patients, Researchers, and Supporters! We are pleased to have CML Warrior and Author Anne McAuley Lopez here to share her experience with Chronic Myeloid Leukemia (CML), how she came to write a book about it, and how she met our Executive Director, Tara Coleman.

Thank you for taking the time to talk with us, Anne. What inspired you to write your book We Don’t Get to Ring the Bell?

When I was diagnosed with CML in July 2016, I dove right into finding resources focused on helping blood cancer patients. I joined social media groups but found that people were asking the same questions over and over. Questions like how do you find a CML specialist? What should I ask my doctor? What side effects are you experiencing? How do you manage pain? As
a writer, I realized I could use my gift to provide a book about my journey that answers many of these questions, so that’s what I did.

What do you wish CML patients were told?

I wish hematologists/oncologists answered the questions that I mentioned previously. I still see the same questions, which is frustrating. I cover these and more in the book. Patients also need to have their bloodwork explained to them. Too often, I see people posting their bloodwork results, asking what the numbers mean. That should be done at a doctor’s appointment. If you’re not pleased with the interaction with your doctor, ask more questions. If they aren’t answering them for you, find a new doctor. We’ve got to advocate for ourselves.

Tell us about your CML journey.

Four months after my husband Eddie and I got married, I was diagnosed with CML. It was found on regular bloodwork, and I was sent to a hematologist/oncologist who confirmed the diagnosis with additional bloodwork. I wrote the book for the people in our lives that we couldn’t see in the first year post-diagnosis. My nephew was born that year, and I didn’t travel to see him until his
first birthday. That kills me when I think about it. Cancer took that time, and I hate it, but it’s part of the story.
The first year was a struggle to get bloodwork done, handle insurance claims and specialty pharmacies to get my medication and manage pain. Today, I consider CML a chronic illness and treat it as such. We plan rest into our outings. I take my vitamins and doctor-approved supplements, and I live. I think that’s the most important. CML doesn’t control me.

How did you meet Tara Coleman?

During COVID, we needed financial support to get my medication. The retail cost is $10,000 per month, but even with insurance, it can be in the hundreds or thousands per month. Since I didn’t have insurance, we were referred to organizations, including CLRA. That’s when I met Tara. I think our first conversations were an hour long! I was able to not only get patient assistance for my expenses, but I was also able to refer other CML patients to CLRA, and help Tara navigate patients to resources. It was good to be able to give back.

How are you staying involved in the CML community?

I am active in social media groups. When people ask, I offer advice and let them know I authored a book for patients just like them/us. I give away my book, stay connected to Tara and CLRA, and support CLRA and other blood cancer focused organizations. Mark Cuban and his Cost Plus Pharmacy have saved the lives of CML patients. Rather than thousands, my generic medication, Imatinib, costs $40 per month. I tell everyone about it!

Where can we purchase your book?

Amazon offers paperback and Kindle versions of We Don’t Get to Ring the Bell.

Tell us about other writing projects.

Since writing We Don’t Get to Ring the Bell, Eddie and I moved from Phoenix, Arizona, to Charlotte, North Carolina. We love living in the heart of the city, walking to coffee shops, shows, and art museums. I am writing about my adventures on Writer Ramblings and continue working with nonprofits to write content for their websites on Agency Content Writer. I can be reached through those websites or via email at [email protected].

Thank you for sharing your CML journey, Anne!

If you or a loved one needs assistance with medical bills, visit Patient Aid for more information.