Amy’s Journey with Multiple Myeloma: Finding Purpose Through Creativity

Amy's life took a sharp turn in 2018 when she was diagnosed with ultra-high-risk multiple myeloma. Like many others facing this disease, her experience was marked by both good and bad years, relapses, and a series of treatments that tested her strength and resolve. However, amid the grueling treatment regimens, Amy found solace and purpose in a lifelong passion—sewing—and ultimately in creating her book, Stitches.

A Battle with Aggressive Myeloma

From the start, Amy’s myeloma journey was far from typical. After her initial diagnosis, she relapsed much quicker than most patients, a devastating reality for her and her family. Over the next two years, Amy underwent a stem cell transplant and CAR-T therapy, both offering moments of hope. In 2022, CAR-T worked well, granting her a year of remission—an outcome she had hoped would last longer.

As her journey continued, Amy tried various treatments, each with its own set of challenges. Teclistamab (Tecvayli), a bispecific antibody therapy that she hoped would help, had no effect, potentially due to her previous BCMA-targeted therapy. Selinexor (Xpovio), another option, proved to be especially tough due to its difficult side effects. However, her perseverance paid off when she began talquetamab (Talvey, Johnson&Johnson) in December of 2023. Within six weeks, her light chains dropped below normal, and she’s been in complete response since February 2024—a monumental victory.

This moment of deep response to her treatment brought with it unexpected blessings. Amy regained her energy, allowing her to enjoy seven weeks with company—something she hadn’t experienced in a long time. She continued working with her integrative oncologist, introducing dietary changes and supplements like zinc, which helped restore her sense of taste.

While her immune system remains fragile, requiring regular clinic visits and shots to boost her white blood cell count, Amy now feels like she has her life back. Her energy levels are better than they’ve been in years, and despite lingering nail issues and a low absolute neutrophil count (ANC) count, she’s enjoying a quality of life she thought might be out of reach.

A Creative Outlet During Treatment

One of the most remarkable parts of Amy’s story is how she turned her creative passion into a source of hope and healing during her hardest days. Amy’s love for sewing started when she was just 11, learning from her mom— who sadly passed away from cancer when Amy was 16. Over the years, sewing became more than just a hobby; it was a way for Amy to stay connected to her mother and express herself creatively.

During the pandemic and her stem cell transplant, Amy’s creative focus turned to quilting. Her connection to fabric and design blossomed further when her oldest sister, inspired by their family history, invited Amy to join a writing group. Initially, the project focused on memories of their mom, but as time passed, her sister encouraged Amy to write a book about her own experiences. Although she didn’t want to write about cancer, as it was not something she wanted to dwell on, Amy embraced the idea of a book that documented her sewing journey.

Adirondack Mountains (picture source and quilting project)

This book, Stitches, became a labor of love. Over 18 months, Amy poured her energy into it, crafting a narrative that captured her progression from a little girl learning to sew to the accomplished artist she is today. More than just a chronicle of her creations, the book became a way to show how creativity can be a lifeline, especially during difficult times.

As mentioned earlier, Amy wanted Stitches to focus on things that have brought her joy—her sewing projects, her journey in fashion design (wedding dresses!), and the many pieces she has created and gifted to others. The book is a testament to her resilience and determination to find light, even in the darkest moments.

Writing her book also gave her a sense of purpose while enduring long clinic visits, many days a week and treatments. Instead of dreading the hours spent in infusion chairs, Amy focused on collecting her projects and putting them on paper, a welcome and inspiring distraction. For her, it was a way to use the time productively, showing others in a similar situation that even when facing the hardest challenges, there are ways to find positivity and purpose.

Sharing Her Story Through Stitches

This year, Amy celebrated her 60th birthday and six years of survival since her diagnosis in 2018—what she calls “60 and 6.” At this age, she has endured more than most can imagine, yet she continues to thrive and create. Her book Stitches is not just a record of her sewing projects but also a reflection of her journey—how she has stitched together moments of joy, even in the midst of adversity.

Amy has self-published her book, selling it at cost, simply as a way to share her story. For her, it’s not about making money but about spreading the joy she has found in her craft. Readers can purchase it on Blurb.com in both paperback and e-book formats, with each copy a piece of Amy’s passion.

Amy’s quilting, sewing, and book have been therapeutic outlets, giving her something positive to focus on rather than the challenges of her cancer treatment. She continues to participate in quilting groups, like the one at Gilda’s Club, and finds deep satisfaction in gifting her creations to others.

As Amy reflects on her journey, she is grateful for the energy and resilience that allow her to continue doing what she loves. Her story is one of hope, creativity, and the belief that even in the most challenging circumstances, you can find ways to connect with what brings you joy.

To purchase Amy’s book, Stitches, you can visit Blurb.com for both paperback and e-book options.

To read other myeloma patient and caregiver stories, visit our website: Myeloma Stories and Experiences