A Caregiver’s Truth about Multiple Myeloma
John
State: New York
Congressional District:
Diseases
Bone / Muscle Disease, Cancer, Gastrointestinal Disease, Rare Disease
Issues and Challenges
John has encountered: Copay Issues, Insurance Issues, Surprise Billing, Premium Payments
My Story
Like so many families facing cancer, we continue to navigate significant obstacles within the healthcare and insurance systems—barriers that affect access to critical treatments as well as the physical and emotional toll that inevitably accompanies a complex disease like multiple myeloma.
I am the primary caregiver to my wife, Elissa, who was diagnosed with multiple myeloma in October 2017. Our family had faced serious illnesses before, including the misdiagnoses of our parents’ cancers and my own medical crisis in 1992, which required brain surgery. Those experiences taught us resilience, vigilance, and the importance of advocating for competent, timely medical care. Even with that history, Elissa’s diagnosis was devastating. I knew it would require unwavering strength, careful decision making, and hope.
After months of misdiagnosis, an MRI for her cervical stenosis revealed extensive lesions throughout her skull and cervical spine. She was hospitalized shortly afterward for dehydration caused by severe night sweats and fevers, yet no cancer tests were ordered and no specialist was consulted. The only department that visited promptly was billing. At that point, we realized we had to seek a higher level of care.
Thankfully, her orthopedist at the Hospital for Special Surgery immediately arranged a PET scan and referred us to Memorial Sloan Kettering. From the moment she was admitted and met her team there, we felt—for the first time—confident that we were on the right path. As we learned more about the disease, treatment protocols, and advances in research, our fear was tempered by cautious hope.
Joining a local multiple myeloma support group was another turning point. Meeting others who were living full, meaningful lives despite setbacks and side effects reassured us that there was a “new normal” we could adapt to. Elissa later became co-leader of the group and has grown into a strong advocate, actively involved with the International Myeloma Foundation.
As her caregiver, I work to stay informed about innovations in treatment and ensure she has the support she needs—attending every appointment, every treatment, and every advocacy effort. As a 9/11 responder and survivor, I understand how essential public advocacy is, especially when powerful entities hope you will stay silent. While her diagnosis reshaped our life plans, we remain grateful to have access to world-class medical care and health coverage—advantages many patients do not have.
Still, we face battles with insurance like everyone else. I see firsthand how many patients struggle to access the medications and therapies they desperately need. Unless someone has lived in this world, they rarely understand its hidden burdens. One of the most frustrating comments caregivers hear is, “She looks great” or “She doesn’t look sick.” This disease is relentless, even when it’s invisible. That is why continued advocacy and sustained research funding are essential—because this fight is far from over.
My Motivation and Inspiration
My motivation is to ensure that Elissa receives the best care possible while championing continued and expanded research—so she, and others like her, have the strongest possible chance through treatment.
Share This Story
Get the most from every Story
Find A Compelling Patient Story
Share it on social media.
Share Your Story On Our Network
Share your insights, challenges and what keeps you going.