Processing the Emotional Side of Myeloma: The Story of Liz Levine

In November 2022, Liz Levine’s world turned upside down. The 50-year-old mother of two had never heard of multiple myeloma before. But after months of unexplained fractures, a diagnosis of osteoporosis, and persistent (though slight) anemia, a hematologist confirmed what she never expected: she had multiple myeloma.

Her initial reaction was sheer panic. "I thought I was dead," she recalls. She and her husband stared at her kappa light chain numbers, convinced there had been a mistake. The whirlwind of medical tests, second opinions, and consultations left her in shock.

Navigating the Emotional Toll

Physically, treatment was grueling. She endured induction therapy, a stem cell transplant, and maintenance therapy. But for Liz, the emotional burden was even heavier. "Myeloma was 100% of my thoughts—it took over everything," she explains.

She found solace in therapy, where she learned an invaluable lesson: myeloma didn’t have to consume her entire life. Over time, she worked to shift her mindset, allowing myeloma to be just a slice of her life rather than the whole pie.

Being diagnosed at 50 was especially challenging. Most patients she met were older, and she struggled to find peers facing the same experience. "You're grieving the life you thought you’d have," she says, a realization that required both mental and emotional work to accept.

A Second Cancer Diagnosis

Just four months into myeloma treatment, Liz went in for a routine mammogram. She nearly skipped it, assuming her full-body PET scan would have caught any issues. Instead, she was diagnosed with stage 1 breast cancer. "I was getting calls, support, and donations for breast cancer—none of that happened with myeloma," she notes.

Liz had a lumpectomy and a month of radiation while continuing myeloma treatment. The overlap was overwhelming, but she pushed through, undergoing additional induction therapy and, eventually, a stem cell transplant in September 2024.

Facing the Stem Cell Transplant

Liz feared the transplant. "I didn’t understand it," she admits. But after seeing a local friend go through it, she felt more prepared. She checked her children into college in August and, just days later, checked herself into Memorial Sloan Kettering Cancer Center (MSKCC) for an outpatient transplant.

She tolerated the chemotherapy well but experienced engraftment syndrome, with fevers and a full-body rash. Despite the challenges, she came out the other side, undergoing a biopsy in December that showed she was MRD-negative—a significant milestone.

Finding Support Through HealthTree Coach

Navigating myeloma alone wasn’t an option. In the middle of the night, Liz stumbled upon HealthTree and found the Coach program. Connecting with a coach, Maddie, changed everything.

"She validated my experiences, helped me feel less alone, and gave me the best advice: ‘Only take in as much information as you can handle. Stop when you feel overwhelmed.’"

That connection was so impactful that Liz became a HealthTree Coach herself. She now aims to support newly diagnosed patients, helping them understand treatment options and guiding them through the same uncertainty she once faced.

You can sign up for a free account to request a coach (including Liz!) or to become one today. Click the button below: 

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Advice for Myeloma Patients and Caregivers

Liz’s biggest piece of advice? Trust yourself. "If your gut tells you something isn’t right, listen to it."

She also emphasizes the importance of second opinions and seeing a myeloma specialist, even if it requires travel. (Find a specialist here: Myeloma Specialist Directory)

For healthcare providers, she urges better support for younger patients: "Connect them to support groups and financial resources. They need them."

For newly diagnosed patients, she reassures: "You don’t have to learn everything in a week. Myeloma gives you time to adjust—take it."

Moving Forward

Liz refuses to let myeloma define her. She continues treatment, supports others, and ensures her children can live their lives without being overshadowed by her diagnosis. "Myeloma is a part of my life, but it’s not my whole life," she says. And with each day, she proves that to be true.

As part of Myeloma Awareness Month this March, we're sharing powerful stories like Liz's and those of other people with myeloma. Follow us throughout the month for patient stories, educational resources, and special activities. We extend our gratitude to Pfizer (ELREXFIO) for sponsoring our Myeloma Awareness Month campaign and helping us amplify these important voices in the myeloma community.