Sleep Walking

Recovering from CAR-T is unlike anything I've been through. The fatigue is not just in my limbs, it's in my brain. I move through the day, but even light conversation can drain me to the point of shutdown. Only naps—disorienting and oddly unsatisfying—give me enough to keep going. I don't wake up refreshed. Just slightly less stunned.

My mind feels slowed down by something dense and invisible. Like thoughts are dragging through mud—heavier, slower, harder to hold.

Last week, my friend, Inga, took me to the clinic. It was a longer than usual appointment and when it was over, both of us were ravenous, so we went to the food court for a bite to eat. By the time I got home, I was so tired I fell asleep on the sofa. For three hours. I dreamt Inga came back and was trying to rouse me to take me for a walk, but I couldn't wake up.

When I met with my doctor on Friday and told him how incredibly tired I felt, he leaned over and said, "Let me tell you something, kiddo, the fatigue may last for months."

Months.

Exhaustion has me thinking about my mother, who told me earlier this week that she's never, ever had trouble sleeping. Not even the night my father—the love of her life—died suddenly of an aneurysm. The next day, she said, she was flabbergasted to realize she had slept straight through the night. She told me this with no self-congratulation. Just a fact of life. Her life.

Is it a coincidence that she is 90 and I got a cancer diagnosis at 59?

Sleep touches nearly everything: brain function, immune regulation, hormones, metabolism, even cellular growth and repair. It's maintenance. It's medicine.

But it’s always been a struggle for me. I was a sleepwalking child, then a typical adolescent, burning the candle at both ends. That candle kept burning through college, my nursing career, law school, and holy hell, did it burn during the parenting years. My cumulative sleep deficit probably adds up to a decade. Maybe more.

By the time I was diagnosed with multiple myeloma, I was napping constantly and still tossing and turning the night away.

About six weeks before my stem cell transplant in 2022, I spent a week in the hospital for high-dose chemo. By the time I was admitted for the transplant itself, I was already depleted. That stay meant three more weeks in the hospital. Here's just a sample of what wrecked my sleep: high-dose steroids, every-four-hour vital signs, blood draws, IV alarms, cold rooms, harsh lights, fear, and fevers. I slept in fits. I felt groggy, disoriented, and emotionally brittle.

Hospitalization systematically destroys sleep. Research reveals that sleep disturbance is one of the leading causes of hospital complications, like falls, delirium, infections. It's also linked to reduced immune function, poor blood pressure control, and mood instability. But most patients don't complain about it.

We've internalized the idea that sleep disruption is the price of care. I think it's a cost we can't afford.

I'd been paying this price for decades. Lately, I've been wondering how long before my diagnosis did my body begin waving the white flag? As a child: febrile seizures, severe chickenpox, mono that knocked me out for nearly a month. As an adult: recurrent colds and bronchitis, hemorrhagic shigella.

Before cancer, I didn't see a pattern. I do now.

The immune system is not a fortress. It's a negotiation between rest and readiness. And sleep, especially deep, slow-wave sleep, is what recalibrates that balance. When you live on too little for too long, the scales shift. Inflammation rises. Defense weakens. The risk of chronic illness and cancer increases. Plasma cells—the ones that go haywire in myeloma—don't break down overnight. They build up damage, quietly, over time.

Ironically, during my most recent hospitalization for CAR-T, I finally slept deeply. I used an eye mask, earplugs, and mouth tape. I protected my sleep like it was sacred. Because it is.

I no longer think of rest as optional. It's an ancestral, biological imperative. My new rule: If it comes down to one more task or going to bed, I choose bed. I choose darkness. I choose repair.

Our need for sleep is not a weakness or laziness. It's not something we earn only after we've worked hard enough. It's the foundation that makes everything else possible, including the strength to face whatever comes next.

Even if what comes next is months of fatigue that feels like moving through mud. At least now I know that rest is my right. Sleep is my sanctuary.

And you? What do you still treat as optional that might actually be essential? What would it take to give yourself the deep sleep you deserve?