Living With the Unknown: Jonathan Gluck on Multiple Myeloma and Learning to Navigate Uncertainty

As we wrap up Multiple Myeloma Awareness Month, we’re highlighting the power of personal storytelling and lived experience. In this conversation with Jonathan Gluck, a journalist, survivor and author of “An Exercise in Uncertainty”, he reflects on his unexpected multiple myeloma diagnosis, the strain and strength within his marriage, and what it truly means to live with long-term uncertainty. His journey offers hard-earned insight for patients and care partners navigating life with cancer.

Cure: You begin your memoir with what seemed like such an ordinary moment — slipping on ice. Why was it important to show how something small could change the course of your life?

Gluck: That’s exactly the point: you don’t always know when something big is happening.

I slipped on ice but didn’t even fall — just twisted my hip slightly. The next morning it hurt, but I assumed it was nothing. I was 37, healthy, with no family history of cancer. It felt like a minor orthopedic issue. Weeks went by, and when it didn’t improve, my doctor ordered an X-ray, which showed nothing. Life got busy — a new job, our first child — and I let it go.

A year later, the pain was worse. An MRI revealed a lesion on my hip. I didn’t even know what that meant. When my doctor said it was a tumor, and then confirmed it was cancer, it felt like a lightning bolt out of the blue. Something that seemed so innocent had completely changed my life.

The lesson is simple: if a symptom doesn’t go away or doesn’t make sense, follow up. It may not be serious — but if it is, early detection matters.

When you first experienced the hip pain, you minimized it. Was that denial, optimism, or just feeling young and healthy?

It was really the last one — I was young and had no reason to suspect cancer. It truly never crossed my mind.

Because I had twisted my hip, I assumed the pain had a logical explanation — torn cartilage, bursitis, something orthopedic. Cancer felt so unlikely that it didn’t enter the picture. Looking back, I wish I had pushed for answers sooner.

I was fortunate that when it was diagnosed, it hadn’t spread far. But I’ve learned that if something lingers, there’s usually a reason. It doesn’t automatically mean cancer — but it does mean you should get it checked out.

Your relationship with your wife, Didi, is such a strong presence in the book. How did your diagnosis impact your marriage?

It was hard. There’s no sugarcoating it.

We wanted to tell the truth about what it’s really like for both the patient and the caregiver. The Hollywood version is that the caregiver is endlessly patient and nurturing, and the patient is grateful and serene. That wasn’t our reality.

There was stress, fear and, at times, anger — sometimes directed at each other without fully understanding why. I was anxious about my illness, dealing with pain and constant appointments. That affects your mood. Dede was scared too — about my future, about her own future, about raising our child. That fear showed up in her emotions as well.

It took time — and both individual and couples therapy — to recognize what was happening. Once we understood that we were each reacting to fear rather than to each other, we were able to rebuild in a healthier way. But it required a lot of work.

What advice would you give other couples navigating cancer together?

Try to understand the other person’s perspective and be patient with each other.

Both people are going through something incredibly hard. That will affect how you move through the world and how you treat each other. Therapy helped us see that neither of us was being intentionally insensitive — we were overwhelmed.

When you recognize that your partner is carrying their own fear and anxiety, it becomes easier to lower the temperature. Compassion goes a long way.

Many multiple myeloma patients talk about “scanxiety.” How do you manage the emotional buildup before test results?

Uncertainty is brutal. Humans are terrible at dealing with it.

I’ve been living with this disease for more than 22 years, and even now, waiting for results every three or six months isn’t easy. I spoke with experts who study high-stakes waiting periods. Their research shows people often prefer a negative outcome over prolonged uncertainty — that’s how uncomfortable not knowing can be.

What helps? Distraction — especially activities that fully absorb you. Reading or watching TV can help, but what works best are “flow state” activities that demand your complete focus. For me, that’s fly fishing. For someone else, it might be yoga, baking or meditation. Anything that leaves no room in your mind for intrusive thoughts.

And it also helps to remember: this is hard for everyone. Even experts in uncertainty struggle with it. Feeling anxious doesn’t mean you’re weak — it means you’re human.

At the time of your diagnosis, you were thriving professionally. How did cancer shift your sense of identity?

At first, I tried to keep the diagnosis small — both publicly and internally. I didn’t tell many people, and I didn’t want it to define me. I saw myself as a journalist, husband, father and friend who happened to have a health problem.

Over time, as treatments intensified and became more visible — hospitalizations, hair loss — I had to acknowledge that cancer was a bigger part of my identity than I wanted it to be.

I still believe it’s important not to let illness define you completely. But I’ve had to find a balance between minimizing it and honestly accepting how much space it occupies in my life.

What would you say to someone who feels something isn’t right but doesn’t yet have answers?

Get it checked out.

I know it’s scary. It’s tempting to ignore symptoms and hope they go away. But if something is persistent and unexplained — especially bone pain without an obvious cause — don’t wait too long.

You’re not choosing between having cancer and not having cancer. If it’s there, it’s there. What you are choosing is whether to detect it early. And we know scientifically that early detection can save lives.

When readers finish “An Exercise in Uncertainty,” what do you hope they understand about living with uncertainty?

Uncertainty isn’t unique to cancer — it’s part of being human.

Whether it’s health, work, relationships or the state of the world, none of us has guarantees. I’ve come to think about it through the lens of the Serenity Prayer: focus your energy on what you can control, and work toward accepting what you can’t.

For me, that means going to appointments, following treatment plans and doing what I can to stay healthy. But when I’m waiting for results or facing something outside my control, I try not to waste energy fighting reality.

It’s easier said than done. But learning to live alongside uncertainty — rather than constantly battling it — has been one of the most important lessons of my life.

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