🌀 Mood: Frustrated, Exhausted, Determined, Faithful

One thing I’ve learned throughout this journey with Multiple Myeloma is that just when you think things are settling down, something else comes along.

I made it through months of chemotherapy, a stem cell transplant, and all the challenges that came with recovery. I celebrated being MRD negative, which was an incredible blessing. And while I know my journey with Multiple Myeloma is far from over, I was finally beginning to feel like I could settle into a routine.

My maintenance treatment was supposed to be part of that routine.

But lately, it has been anything but routine.

A Plan to Keep the Cancer Away

Because my Multiple Myeloma is considered high-risk, my medical team at Fred Hutch developed an aggressive maintenance plan following my transplant.

That plan includes three medications: Pomalyst, which I take orally, and Darzalex Faspro and Velcade, which I receive through injections every two weeks.

The goal is simple, even if the treatment isn’t: keep the cancer in remission for as long as possible.

My specialist at Fred Hutch oversees my overall treatment plan, while my local oncology team in Olympia administers my care.

At least, that’s how it’s supposed to work.

Unfortunately, insurance authorizations have turned what should be a straightforward treatment plan into an ongoing battle.

Three Cancelled Appointments

Over the past five weeks, I’ve had three treatment appointments cancelled.

Three.

Not because I was too sick to receive treatment. Not because my doctors decided I no longer needed it.

But because Kaiser Permanente has denied authorization for Darzalex Faspro, determining that it isn’t medically necessary for maintenance.

That’s difficult for me to understand.

My specialist at Fred Hutch, who knows my history, my high-risk diagnosis, and everything I’ve been through, prescribed this treatment for a reason.

Yet here I am, unable to receive one of the medications that is supposed to help keep my cancer from returning.

I’ve spent hours on the phone trying to get answers. During one call with Kaiser, I was on the phone for 90 minutes and thought we had finally made some progress.

Then I called my local oncology office, hoping to share what I’d learned, and left the conversation feeling dismissed and unheard.

My primary oncologist has been away, and trying to get everything resolved has been incredibly frustrating.

Meanwhile, the appointments keep getting cancelled.

And the days keep passing.

Then There’s the Pomalyst Situation

As if the injections weren’t enough to worry about, I’ve also been dealing with another medication issue.

For the first six months of my treatment, I took brand-name Pomalyst without the problems.

Then Kaiser required me to switch to a newly available generic version.

I wish I could say the transition went smoothly.

It didn’t.

I began experiencing severe nausea and debilitating headaches. Not just occasionally, but throughout the day. It became so difficult that I couldn’t tolerate the medication.

My oncologist recognized what was happening and submitted a request for me to return to brand-name Pomalyst, documenting the side effects I was experiencing.

That request was denied, too.

So now I’m dealing with two separate medication issues at the same time.

When I looked back over the past ten weeks, I realized something that really bothered me.

I’ve only been on my complete prescribed maintenance treatment for two of those ten weeks.

Think about that for a moment.

After everything I’ve been through to get this cancer into remission, I can’t consistently receive the very medications prescribed to help keep it there.

And that’s frightening.

The Part Nobody Talks About

When people think about cancer treatment, they often think about chemotherapy, hospital stays, side effects, and the physical toll it takes on your body.

And believe me, those things are difficult.

But there’s another side to this journey that doesn’t get talked about nearly enough.

The paperwork. The phone calls. The authorizations. The denials. The waiting.

And the constant need to advocate for yourself when you’re already exhausted.

I’ve had conversations where I’ve been assured things would be resolved, only to find myself weeks later still waiting.

I’ve been told by Kaiser Pharmacy that they’re trying to reach my doctor’s office but haven’t been able to get through.

I’ve reached out to Fred Hutch for help with the Pomalyst denial, only to be told by a nurse that there was nothing they could do.

And now I’ve received the official written denial for Darzalex.

It’s exhausting.

I don’t expect every part of this journey to be easy. I’ve known from the beginning that living with Multiple Myeloma would come with challenges.

But I didn’t expect getting access to my prescribed maintenance medications to be one of the biggest ones.

There are moments when I genuinely wonder if anyone understands what this feels like from the patient’s side.

Because for me, these aren’t just medications on an insurance claim.

They’re part of the plan my doctors put together to give me the best possible chance of keeping this cancer away.

Still Advocating, Still Trusting

I haven’t figured out how all of this will be resolved.

And I would be lying if I said I wasn’t angry, frustrated, and concerned about what these interruptions could mean for my health.

But I also know how far I’ve come.

I think back to July 28, 2025, when I first learned I had Multiple Myeloma. I think about the months of treatment, the transplant, the difficult days of recovery, and the incredible news that I was MRD negative.

God has carried me through so much.

And while I don’t understand why I’m facing yet another obstacle, I know I haven’t come this far to stop advocating for myself now.

I will keep asking questions. I will keep making phone calls. And I will keep pushing for the treatment my medical team believes I need.

One thing this journey has taught me is how important it is to speak up for yourself. If you’re facing something similar, please don’t be afraid to ask questions, seek answers, and make sure your concerns are heard.

I also want to thank everyone who continues to check on me, pray for me, and encourage me. Those things mean more than you know, especially on days when I feel worn down by it all.

I don’t know what the next few weeks will bring.

I’m praying for answers, for the right people to step in, and for a resolution that allows me to get back to focusing on my health instead of fighting for my medications.

My circumstances may feel uncertain, but my faith isn’t.

Through every challenge, every setback, and every unanswered question, God has remained faithful.

And I’m trusting Him through this one, too.

“We have this hope as an anchor for the soul, firm and secure.” – Hebrews 6:19

More to come.