F. Linda Cohen, from Baltimore, now lives in Franklin, Michigan. She attended UMBC and attained her Masters’ Degree from Oakland University, Rochester, Michigan. Linda, a retired reading specialist, with a specialty in dyslexia, published a book documenting her parents’ story in February, 2019. Cohen’s book, "Sarinka: A Sephardic Holocaust Journey From Yugoslavia to an Internment Camp in America," is currently in the libraries of the United States Holocaust Memorial Museum in Washington D.C. , Yad Vashem Holocaust Museum in Israel, the Zekelman Holocaust Memorial Center and other community and school libraries.

Cohen was diagnosed with small lymphocytic lymphoma in 2009. 

Linda Cohen

Linda Cohen is a survivor of small lymphocytic lymphoma and was diagnosed in 2009. Catch up on all of 

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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Articles

Living with small lymphocytic lymphoma in remission presents a complex emotional and physical landscape. The patient experiences a temporary reprieve from illness due to BTK inhibitors like Calquence, but the uncertainty of remission looms. The decision to pause medication, despite its side effects, introduces a new phase of monitoring and potential relapse. Emotional triggers, such as reading about similar conditions, highlight the ongoing psychological impact. Despite the uncertainty, the patient finds moments of freedom and gratitude, learning to navigate life between health and illness with resilience and optimism.

I’m in remission from small lymphocytic lymphoma and off treatment, savoring this break while learning to live with the uncertainty that still lingers.

Finding Freedom and Uncertainty in My Cancer Remission Pause

At a recent dinner honoring a new president of an organization, I was handed a cocktail in a beautiful martini glass — a grapefruit vodka punch. Instinctively, I thought, “I can’t have this.” It had only been a week since I had stopped my cancer medication that I took twice a day. For years, grapefruit was completely off-limits due to its interaction with this pill. But then, something clicked: “Wait… I’m off that medication now.”

It’s been almost three years since I tasted grapefruit, one of my favorite fruits. And there I was, holding a glass full of it, smiling from ear to ear. I couldn’t help but tell everyone around me why this cocktail was such a big deal. It may sound like a small thing to you, but to me, it was monumental.

When I told my husband later, he surprised me after his next grocery run with a fresh grapefruit. That simple gesture brought me so much joy. Because it wasn’t just about the fruit — it was about freedom. It symbolized the end of a long chapter of rigid medication schedules, the grapefruit restriction, and constant reminders of my illness. That’s what three years of taking cancer meds every twelve hours with exactly eight ounces of water will do to you.

Sixteen years ago, I was told I had an incurable cancer. And while it’s still technically incurable, today I stand in a place I never imagined possible. Thanks to emerging treatments and compassionate, innovative care, my future feels more open than ever. I’ve learned to reframe what it means to live with a chronic illness. Yes, it will eventually come back, but instead of focusing on that, I’m choosing to focus on the time I’ve already been given — and what still lies ahead.

When I started a newer biological medication, Calquence (acalabrutinib), a BTK inhibitor, a few years ago, I was told I may be taking these pills for the rest of my life. There was no long-term protocol because the meds were so new. Now, being off of them feels surreal and fills me with hope. No one knows when I’ll need to restart this medication or what new drugs will be available at that time. The doctor said it’s possible that I could be off of it for years.

Having cancer can, in its strange way, be a gift. It makes you more likely to live fully, to love deeply, and to count every moment that truly matters.

Through it all, my faith has been my anchor. That, along with the unwavering support of my family and the dedication of my doctor, has kept me going.

Now, I just want to be. I want to live life without cancer constantly shadowing my thoughts. It’s the closest feeling I’ve had or will ever have to being cured — and it’s a freedom I never thought would be part of my story.

We don’t know how much time we have. This is true for everyone, not just cancer survivors. What I do know is that I want to spend my time focusing on joy, meaning, and the things I love.

I recently read an article in CURE that reminded me why we share our stories. William Ramshaw’s piece, “Pancreatic Cancer Tried to Crash My Three Daughters’ Weddings,” caught my eye with its powerful title, but it stayed with me because of the hope he shared. His belief in miracles and the resilience in his journey reminded me that while our stories are different, our emotions are often the same.

Reading his story made me pause and reflect on how far I’ve come. It gave me strength and gratitude. Because no matter the diagnosis, when you’re the one going through it, the journey is never easy, but it’s always yours.

Research and find the best doctor for you and your specific cancer.

Do everything you can to stay positive — it makes a difference.

And above all, have faith and be grateful for each and every day.

Having cancer can, in its strange way, be a gift. It makes you more likely to live fully, to love deeply, and to count every moment that truly matters. And sometimes, it makes a grapefruit cocktail feel like a triumph!

A cancer survivor reflects on the newfound freedom and joy experienced after discontinuing a restrictive medication regimen. The ability to enjoy grapefruit again symbolizes liberation from the constraints of cancer treatment. Despite living with an incurable cancer, the survivor embraces life with hope, focusing on the present and cherishing meaningful moments. The narrative underscores the importance of faith, family support, and innovative treatments in navigating chronic illness. Sharing personal stories fosters connection and resilience among cancer survivors, highlighting the shared emotional journey despite differing diagnoses.

After years off medication, I finally enjoyed a grapefruit cocktail — symbolizing freedom from cancer’s constant shadow and hope for the future.

A Cocktail and the Freedom I Never Expected With Cancer

“What are these nodules I’m feeling in my neck?” I asked almost 16 years ago. I went to my primary care doctor, who told me they were swollen lymph nodes. The only way to know if they were concerning, he said, was to get a biopsy. He referred me to a surgeon who assured me they were probably nothing but offered to do the biopsy to ease my worries.

A few days later, I got a call from the surgeon’s office. They reminded me to come in for stitch removal—and said they’d go over the results at that time. I knew that wasn’t a good sign. I started to worry. My husband told me I was being pessimistic.

“There’s nothing to worry about,” he said.

At the appointment, the surgeon told me the biopsy showed small lymphocytic lymphoma (SLL). It was a chronic cancer, he said, but one I could live a long life with — even though there’s no cure.

“You need to make an appointment with an oncologist and go from there,” he added.

I looked at my husband, who looked like he’d just been punched in the stomach. I felt instantly nauseous. Of course, I went home and Googled it. I read that the average survival rate was ten years. I was 57 at the time. All I could think was, 67 is not long enough.

I booked three appointments with different oncologists. The first two were similar — they explained that SLL is an indolent (slow-growing) cancer and recommended a “watch-and-wait” approach if I could manage the anxiety of not starting treatment right away.

“Some people can, and some can’t,” they said.

“You don’t want to use up your treatment options before you really need them.”

I knew I could handle it. Still, I was hoping for something more from my third appointment.

That’s when I met Dr. Lyle Goldman of Newland Medical. From the moment I told him what I had read, he responded differently. He said:

“You are not average. You are not a statistic. You found it early, you’re here already, and we will monitor you closely. I’ll see you every three months. You can live a long life — with treatment along the way as needed. Plus, there are many new drugs on the horizon.”

I turned to my husband, and we both felt it in that moment: This was my doctor.

Dr. Goldman gave me something the others didn’t — hope. He gave me a mindset I could hold onto. And that made all the difference.

Over the years, I did need treatment. I had three different infusion regimens and radiation. Then, about three years ago, I suddenly didn’t feel well. I was losing weight and constantly exhausted, needing daily naps—which wasn’t normal for me. Bloodwork showed my calcium was dangerously high. Dr. Goldman got it under control quickly with an infusion, then ordered a CT and PET scan.

The scans showed my SLL had worsened. My lymph nodes were enlarged throughout my body. Dr. Goldman started me on a BTK inhibitor called Calquence (Acalabrutinib). He explained it was a pill I’d take twice a day, every 12 hours.

“In a week,” he said, “it will melt your lymph nodes.”

It sounded like a miracle — and that’s exactly what it was.

I felt like myself again. SLL was pushed to the background, and life became livable. I continued to see Dr. Goldman every three months, as always.

Recently, I had a specialized test called flow cytometry, part of something called MRD testing (Minimal Residual Disease). It detects even the tiniest amount of cancer cells in the body. My results showed that abnormal B-cells represent 0.01% of my total cells.

That number—tiny as it is—brings up a swirl of emotions: gratitude, anxiety, vigilance. It doesn’t mean recurrence, but it could signal a higher risk of return down the line. The recommendation was to stop Calquence for now. It may be years before I need it again.

As an almost 16-year survivor, I’ve learned this is what long-term life with (and after) cancer looks like. These moments are part of it. They don’t mean panic — they mean pause, listen, and keep showing up for yourself.

This is why I believe in both medicine and mindfulness.

And in continuing to move forward — one strong, informed step at a time.

Dr. Goldman, you were right. I was not just a statistic — and you helped me believe it.

I’m here to prove that powerful phrase; after nearly 16 years living with incurable cancer, I know there’s more to my story than the statistics.

You Are Not a Statistic: Facing Cancer With Hope, Not Numbers

Linda Cohen is a survivor of small lymphocytic lymphoma and was diagnosed in 2009. 

When I was first diagnosed with small lymphocytic lymphoma 15 years ago, I was told it was an indolent disease — with no cure. I was 57 years old at the time. First, I had to look up indolent to understand exactly what it meant medically. (Did I mention I was a teacher? I needed the precise definition!) “In a medical context, indolent describes a condition that is slow to develop, inactive, or relatively benign, often associated with little or no pain. It’s commonly used to describe certain types of cancers, such as lymphomas, where the disease progresses slowly. Indolent conditions are characterized by slow growth or development, in contrast to aggressive conditions that progress rapidly.”

But I don’t think I initially processed the part I was told about no cure. Okay, I thought. It could be so much worse. Over the years, I’ve learned to reframe the challenges life throws my way. At least I would have some time with this new life companion — cancer. Thank God it’s not aggressive, and maybe I won’t need treatment right away. Of course, I was shocked. I was trying to process this new reality. It’s much easier to talk about it 15 years later than it was on the day I got the news. At the time, I had just retired from a job I loved — as a reading specialist. I planned to tutor a few hours a week so I could be more available to help care for my aging mother.

With this new normal, I knew I needed to keep tutoring to stay grounded and not dwell too much on the diagnosis. I never shared the news with my mother. She was a Holocaust survivor. My father had passed away. They had been married for 60 years. She simply could not have handled it. So I threw myself into my work — tutoring reading and writing — and into publishing a book about my parents’ survival, titled Sarinka. I also began keeping a 10-year journal. I wanted to document this chapter of my life — not for anyone else, just for myself.

You can see a photo of the journal at the end of this blog. I think you need to physically see it so the idea doesn’t feel overwhelming… even thinking about a 10-year journal!

My family was incredibly supportive. They noticed how completely I poured myself into teaching and writing. I think they understood that those things were keeping me afloat. I became deeply determined to finish and publish Sarinka. I was afraid I might not live to see it in print, and it was a story that needed to be told.

Over the past 15 years, I’ve needed three different infusion treatments, radiation, regular antibody infusions to support my immune system, and now a BTK inhibitor (Acalabrutinib), which I may be coming off of soon. I was told it will come back, but I can go off of it for maybe a few years. But you know what? I’m living a quality life — something I never imagined I’d be able to say when I was first diagnosed.

Teaching, writing and healing have intersected in ways I could never have foreseen. They’ve given me purpose and peace. They’ve helped me stay focused not on illness, but on life. I walk daily with my husband. I laugh, get silly with my grandchildren, whom I’m so lucky to have now, and I remain deeply grateful for this time I’ve been given.

A diagnosis of small lymphocytic lymphoma, an indolent and incurable disease, led a retired teacher to find solace and purpose in teaching, writing, and documenting her journey. Despite the initial shock, she embraced her new reality by focusing on tutoring, writing a book about her parents' survival, and maintaining a journal. Over 15 years, she underwent various treatments, including infusions and a BTK inhibitor, while maintaining a quality life. Her story highlights the importance of finding purpose and gratitude amidst a chronic illness.

Fifteen years after being diagnosed with small lymphocytic lymphoma, I’ve found healing and meaning in the work I love and the life I’m grateful to live.

Linda Cohen

Finding Freedom and Uncertainty in My Cancer Remission Pause

A Cocktail and the Freedom I Never Expected With Cancer

You Are Not a Statistic: Facing Cancer With Hope, Not Numbers

Teaching, Writing, Healing: The Intersections of My Cancer Journey

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