Michele's Story: Beating the Odds with Multiple Myeloma

Michele’s journey with multiple myeloma is one of resilience, hope, and perspective. Diagnosed in 2001 at the age of 47, she has now lived with this blood cancer for over two decades, defying the odds and embracing life with an attitude that has carried her through the many challenges she’s faced.

Accepting the Diagnosis: “Here’s One More Thing…”

When Michele first received her diagnosis, her initial reaction was one of frustration. After struggling with Lyme disease for over a decade and finally seeing improvements after long-term antibiotics, being told she had cancer felt like another mountain to climb.

Michele was diagnosed with Lyme disease at a time when few doctors were familiar with it, and even fewer were willing to treat it. During her search for answers, one doctor noticed elevated immunoglobulin levels at the level of what is called MGUS (monoclonal gammopathy of undetermined significance) and warned her of the potential of bone disease (his words, later she would discover he meant cancer). Though focused on managing Lyme disease, Michele agreed to have her hemoglobin levels monitored by her primary care physician.

In 2001, routine tests revealed that she had multiple myeloma. Still in denial, Michele remained focused on recovering from Lyme disease, reluctant to accept her new diagnosis. However, when her doctor sent a letter urging her to see an oncologist, she realized she had to confront the reality of cancer.

"It was just another thing I had to deal with," she recalls.

She didn’t ask about life expectancy, but research revealed a grim outlook—an average survival of just three years for multiple myeloma patients. Her family, especially her partner, was devastated. Michele, however, decided to face it head-on, even as she hesitated to pursue certain treatments, haunted by the painful memory of losing her youngest sister to melanoma after chemotherapy.

Fighting Back: Navigating Treatments and Trials

For Michele, the early days of treatment were grueling. She was prescribed high-dose dexamethasone, a steroid with difficult side effects that severely impacted her quality of life. But she didn’t face this journey alone. Within months of her diagnosis, Michele joined a support group through the International Myeloma Foundation in El Segundo, California. The community provided a lifeline of information and support. Seeing other myeloma patients who looked healthy and were leading normal lives gave her and her husband hope.

Throughout her journey, Michele remained cautious about every treatment. She was resistant to a bone marrow transplant, knowing it wasn’t a guaranteed cure. It wasn’t until 2009 that she underwent her first stem cell transplant at UCLA, but the procedure didn’t work, and she faced another transplant in 2010, followed by maintenance therapy of lenalidomide.

By 2014, Michele had run out of treatment options. She participated in a trial at UCLA for a drug combination used in leukemia, but the side effects were severe. Around this time, her dear friend and neighbor, who had also been diagnosed with multiple myeloma, suggested seeking care at City of Hope. There, she found a doctor she trusted and began participating in clinical trials again, including one using metformin.

Her last treatment breakthrough came in 2018 when she was enrolled in a CAR T-cell therapy trial at City of Hope. Despite the potential risks—like cytokine release syndrome (CRS) and neurotoxicity (ICANS)—Michele experienced none of the feared complications. She’s been closely monitored ever since and, to this day, remains in response, with no need for maintenance therapy.

The Importance of Sharing Her Story

For Michele, sharing her story is about offering hope to others.

"I want people to know that they are not on death’s door," she says.

Having lived with myeloma for over two decades, Michele is living proof that, while the cancer is serious, it is possible to live well beyond the average prognosis. She hopes her journey can encourage newly diagnosed patients to keep fighting and to see that there is life—a rich, fulfilling life—beyond the diagnosis.

Moments that Made a Difference

Over the years, Michele has encountered people and experiences that helped her navigate the emotional and physical tolls of living with myeloma. One of the most transformative was winning a free year of acupuncture shortly after her diagnosis. The acupuncturist, trained at Yale in psychology and acupuncture in Hong Kong, became a guiding figure for Michele, helping her manage the side effects of treatment while providing emotional support. She saw him weekly from 2002 until 2023 and believes his treatments have been critical to her well-being.

Another pivotal moment came in 2005 when Michele joined a “Beat the Odds” program that focused on shifting mindset and mental health while living with cancer. The program taught her how to reframe her thinking and focus on a healthy perspective. Michele connected deeply with the message and the people she met through the group, some of whom were also defying the odds, living longer than expected. 

For the past eight years, Michele has volunteered at a corgi rescue that provides care for older or medically challenged corgis, giving them a second chance at life and, sometimes, adoption. Over the years, she has adopted several corgis herself. This work has kept her focused on a meaningful cause and helped her think beyond her own challenges.

These experiences helped her realize the importance of mindset in healing, not just physically but emotionally.

Life Beyond Myeloma

Michele doesn’t let cancer define her. 

"There’s more to life than cancer," she says. "In the beginning, you think about it all the time, but as more time passes, it’s not the first thing you think of when you wake up."

Cancer may be part of her life, but it doesn’t consume her. She’s a person with myeloma, not just a myeloma patient.

Michele finds joy in the little things—spending time with her two dogs and cats, watching birds in her backyard, or sharing moments with friends. 

She never expected to live long enough to see the birth of her four grandchildren, but she did, and she’s forever grateful as they are one of her biggest joys in life. Writing has also been an outlet for her creativity, including participating in a workshop offered by her hospital. Poetry has been a wonderful outlet for her across the years. 

One of the most important lessons she’s learned is to maintain a sense of humor. Even though cancer is a tough journey, Michele believes that finding humor in life’s moments has been essential to her survival. "It’s a terrible thing," she says, "but it’s a gift because it changes your perspective."

Advice for the Myeloma Community

Michele’s advice to others living with myeloma is simple: “Find joy in life as much as you can.” From the “Beat the Odds” program to the strength of her relationships, Michele has learned that maintaining a healthy mindset and focusing on the power of gratitude - and what brings happiness -  can make all the difference.

Now approaching 71, Michele has mastered the art of acceptance. This skill has been vital as she’s faced incredible losses, including her daughter to COVID-19. Despite these challenges, she continues to defy the odds and move forward.

"I see myself as a whole being who happens to have cancer," she says, "and I accept whatever may come." And that, for Michele, makes all the difference. 

To read more from patients' and families’ experiences living with myeloma, read through our collection here: 

Myeloma Stories and Experiences