In 2017, a routine blood test revealed abnormalities that led to a referral to a hematologist. When I arrived for my appointment, I realized I was in an oncology office. Panic set in.

I had survived breast cancer 14 years earlier, enduring surgeries, chemotherapy, and five years of drug therapy. The last place I expected to be again was an oncology office for another potential cancer.

After further testing, I was diagnosed with “smoldering” multiple myeloma.

Multiple myeloma is a blood cancer that affects the bone marrow and immune system. Unlike breast cancer, it is incurable. Smoldering myeloma means there is enough abnormal cell activity to suggest that the disease may progress, but no one knows when, or if, that will happen. From that day forward, I would be closely monitored.

I remember sharing the news with my nurse practitioner from my breast cancer journey. She told me something that has stayed with me ever since:
“Honey, we all have something smoldering. The difference is, you know what yours is.”

From that moment on, I made a decision. I would live my best life with grace and a positive attitude. What I didn’t know then was that this mindset would not only carry me forward, but also inspire the people around me.

When “Smoldering” Becomes Reality

Fast forward to 2024.

During a routine visit, I mentioned a small but persistent pain in my back rib. At first, we assumed it was related to weight training. But as a precaution, my doctor ordered a PET scan.

The results showed a lesion the size of a nickel.

Myeloma had arrived.

The Cost of Not Knowing Enough

In many ways, my “live your best life” approach gave me seven wonderful years. But looking back, I also realize I wasn’t doing my due diligence. I wasn’t keeping up with advances in myeloma treatment.

By the time the lesion appeared and I underwent a second bone marrow biopsy, my disease had progressed to high-risk myeloma due to new chromosomal abnormalities. This dramatically affected how my body responded to treatment.

My doctors added therapy after therapy, but the myeloma was stubborn. My numbers improved—slowly, and not enough.

It became clear: I needed a myeloma specialist.

The Access Barrier No One Prepares You For

Patients with multiple myeloma—especially high-risk cases—need specialists on their care team. These are doctors who focus exclusively on myeloma and stay on the cutting edge of treatment advances.

I found a specialist at Memorial Sloan Kettering Cancer Center who had expertise in high-risk disease. He agreed to see me.

I began the intake process. Weeks later, I was told my insurance had denied coverage.

I was insured through the Virginia Marketplace plan, which—like many state-based plans—only covers in-state providers.

There are no myeloma specialists in Virginia.

I appealed. Repeatedly.
Each time, the answer was the same: denied.

No exceptions.

I was shocked. And frightened.

Paying for Care That Should Be Covered

After talking with my family, I made a difficult decision: my health—and my future—were worth the cost.

I found a specialist in a nearby state with more affordable rates. “Affordable” still meant over $2,500 for a single visit, including travel. A visit to Sloan Kettering would have cost twice that.

That one visit changed everything.

The specialist strongly recommended moving forward with a stem cell transplant immediately. My local oncologist agreed, and we began the process.

But because I couldn’t afford ongoing out-of-pocket visits—and my insurance wouldn’t allow telehealth across state lines—that specialist could only support me by reviewing results and responding via email.

I didn’t just need advice.
I needed a specialist as part of my care team.

Still Fighting—and Still Searching

My transplant was only partially successful. I am not in remission, as we had hoped.

After additional high-dose therapy, I moved into maintenance treatment. But the myeloma is still present, and I live with the fear of early relapse.

Once again, I am searching for a specialist—this time with Medicare, which finally opens more doors.

Why This Matters for Patients

I was fortunate. I had family support and the financial ability to pay out of pocket for critical care.

Many patients do not.

For people living with myeloma—especially high-risk disease—access to a specialist is not optional. It can be the difference between stability and progression, between time gained and time lost.

Yet insurance barriers, state restrictions, and limited telehealth access make it incredibly difficult to get the care we need.

We need a healthcare system that recognizes the realities patients face and allows flexibility, exceptions, and access to the right expertise when it matters most.

Because patients shouldn’t have to fight the system just to get the care that could save their lives.

Editor’s Note:
Patients Rising shares patient stories to raise awareness and reduce isolation among patients and caregivers navigating serious health conditions. Stories are submitted by patients and may be edited for clarity and flow while preserving the author’s voice. The experiences described are personal accounts and should not be considered medical advice.

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