Finding Freedom and Uncertainty in My Cancer Remission Pause

Linda Cohen is a survivor of small lymphocytic lymphoma and was diagnosed in 2009. Catch up on all of Linda's blogs here!

I am enjoying this “pause,” but I feel like I’m living between the lines of good health and cancer. My chronic illness — small lymphocytic lymphoma — is currently in a state of temporary remission. I say “temporary” because I’ve been told there is no cure. Still, thanks to the availability of BTK inhibitors like Calquence (acalabrutinib), I have improved significantly.

After almost three years on Calquence, my doctor suggested I consider stopping the medication. I was surprised because originally, I was told I’d likely be on it for life. But there’s no established protocol yet for these newer drugs. I hesitated and finally agreed. It has now been two months since I have been off the medication. I find myself navigating an emotional, physical, and spiritual in-between space — the quiet that lies between illness and health, and I am doing my best to enjoy it.

This remission feels like a pause, not a promise. The only promise is that it will return. We just don’t know when. The medication worked like a miracle, but I knew these drugs were toxic and came with side effects. He believed these were reasons enough to try to go off for however long I could. My doctor reassured me that I would be monitored closely and could restart treatment when needed. By then, there may be even better options.

Still, I carry scars — some visible, some not. I’m currently reading a novel for my book club, unaware until I opened it that it’s about a woman with B-cell lymphoma, the same kind I have. The review I read didn’t mention this. Reading about the character’s PET scan triggered a visceral memory. I was right back in that familiar fear, that moment of waiting. I vividly remember seeing it was the doctor calling before I answered the phone. I knew that whatever words he said would dictate how the rest of my life would go. I do wonder if anyone else in my group will realize how this story might affect me. That in itself will be interesting because I know I won’t mention it.

As of today, I’m dealing with a chronic cough — similar to the one I had before Calquence cleared it up so effectively. I saw my ENT, who told me he’s throwing everything at it: steroids, antibiotics, Pepcid and Allegra. He was optimistic this will help… but then he said something that stopped me cold:

“If it doesn’t get better, you need to go back to your oncologist and get back on your Calquence. If it clears up, you’ll know what you’re dealing with.”

It was a stark contrast to what my oncologist believes — that this cough has nothing to do with being off Calquence. But this approach might prove it one way or another. I’m going with the optimism of my ENT and the opinion of my oncologist for now.

The point is, even while in remission, I’m still living between the lines. There’s no full exhale, no true letting go — just the constant hum of uncertainty, the quiet calculations, the wait-and-see.

Remission, it turns out, isn’t the same as freedom.

I don’t, however, want this to sound negative. On the contrary, I’ve been surprised by how free I feel at times, especially with side effects going away and with no rigid medication schedule to adhere to. I’m deeply aware of how precious this time is. I know it’s temporary, and that’s exactly why I savor it. I feel gratitude every single day. I’m not used to feeling this good without my medication.

I still feel I’m thriving in remission. I’m learning to recognize my triggers and give them the space they need, acknowledging them without letting them control me. I’m human, after all. The key is to let those moments pass and then shift my focus back to the beauty of the life I’m living now.

Most days, that joy wins — and that’s something worth celebrating.

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