Karen Cohn is a retired middle school special education teacher who was diagnosed with follicular lymphoma in July 2020, considered to be highly treatable, but chronic and incurable, which is currently in remission. She is also a fifth-degree black belt in TaeKwon-Do, and is the assistant instructor of a TaeKwon-Do class. She enjoys working part-time with special education students, crocheting, walking, indoor rock-climbing and talking to and petting any dog she sees.

Karen Cohn

Karen Cohn is a retired middle school special education teacher who was diagnosed with follicular lymphoma in July 2020. Catch up on all of 

Are you happy to be done with treatment? Are you relieved? I would feel this way, don't you? These are common questions posed to people who have completed cancer treatment and have been determined to be NED (No Evidence of Disease; remission, to non-medical people).

As a cancer survivor, this is an interesting question and far more nuanced than most people think. Five years ago, I was diagnosed with follicular lymphoma, a form of blood cancer that is considered very treatable but chronic and incurable. Thankfully, it is still in remission following treatment.

The questions above are a follow-on to other, equally well-meaning but still problematic assumptions. Because follicular lymphoma is so treatable (for most people; some people go through 2, 3, even 6 or more treatment modalities before one works, and for some, nothing works), one of the common responses is to ask if I’m happy I got such a treatable cancer. After all, it could be a lot worse! And it could, don't get me wrong, I am fully aware that I could have something far less treatable. On the other hand, I could have something curable, and in many ways, I’d prefer that. No matter what form of cancer it is, having cancer increases the risk of cancer — of the original cancer recurring, of other forms of cancer developing due to treatment, and so on.

So let’s go back to responses to completing treatment. Of course, people assume that completing treatment comes with relief, and in some ways, it does. But in other ways, it simply creates other, similarly intense concerns. People who have been diagnosed with cancer — successfully treated or not — are forever at a higher risk for recurrence. In general, we will spend the rest of our lives being monitored for a potential recurrence. It doesn’t matter how far out we go, there will always be a greater level of surveillance for us than for those who have never been diagnosed.

Here’s the thing: I will never be the same person I was before treatment, and my treatment, compared to a great many people, was pretty mild. I know someone who has stated, categorically, at the age of 26, that if her cancer recurs, she will let it take its course. Treatment was so painful and disruptive that she would rather die than experience it again. I’m nearly twice her age, and having watched her undergo treatment, I understand her decision. I would greatly have preferred to have never gone through this in the first place, and my treatment involved relatively little physical pain and even relatively little physical discomfort.

The emotional toll, on the other hand, was considerable. For example, I retired two years early because of the risks involved in returning to the classroom significantly immune-compromised during COVID. I can never get that back. Oh, I could return to teaching if I wanted to, but it wouldn't be the same; the gap can never be made up. I lost friends who couldn’t deal with my potential long-term illness or death. I made decisions that were significantly impacted by my emotional state at the time, some about actions I felt were necessary at the time, and some to avoid actions that I felt should be avoided. Would I have made the same decisions had I not had cancer? I’ll never know.

That brings me back to those questions people ask. Oh, some people understand; they’ve been there themselves, with cancer or with some other potentially fatal illness. Most people, however, have no idea what the emotional reaction to completing treatment for a potentially fatal illness is. Is there relief when treatment is successful? Some, yes, but there’s also a dawning, and often depressing, realization that nothing will ever be the same again.

Then, too, during treatment, I was focused on treatment. I wasn’t thinking about the future or what came next; I was too busy dealing with what was happening right now. When I finished treatment, all the changes that cancer had wrought in my life came crashing down, and depression hit because the focus of my life — which had been on treatment — changed, and there was nothing there to replace it. This is what people don’t understand: that life doesn’t just magically return to what it was before.

So when people ask those “obvious” questions, they have no real idea what they’re stirring up, no idea that asking those questions often makes the person asked feel like anything they feel is invalid. After all, they 

 feel grateful… right? Not. After all, why should anyone feel grateful for going through a physically, mentally, and emotionally painful experience? It’s a hard thing to explain, and trying to explain it is incredibly invalidating. Please don’t make assumptions about other people’s emotional responses. Just...please don't.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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Cancer survivors often face complex emotions post-treatment, contrary to the assumption of relief. While remission is a positive outcome, the risk of recurrence and the emotional toll of the experience linger. Survivors may feel a sense of loss, as life doesn't return to its pre-cancer state. The focus during treatment shifts to dealing with immediate challenges, leaving a void once treatment concludes. Well-meaning questions about relief can inadvertently invalidate survivors' feelings, as they grapple with the lasting impact of their journey and the realization that life has irrevocably changed.

When treatment ended, people expected relief, but what I felt was loss, fear, and the weight of a life forever changed.

Finishing Cancer Treatment Didn’t Bring the Relief You’d Expect 

Like many people, I subscribe to a variety of newsletters, websites, support groups, and so on. One such site has chat rooms for people diagnosed with a variety of blood cancers, and the moderator posted the following question: If you could choose a word other than "survivor" to describe yourself following diagnosis, what would it be? Having been successfully treated for follicular lymphoma — a form of blood cancer that is considered very treatable, but chronic and incurable — in July 2020, this is a significant question. Answers from other posters varied widely, including, but not limited to, survivor, warrior, thriver, veteran, patient, reliver, maintaining, tenacity, fighter, and far too many more to list here.

My answer was different; it was “person”. Here’s the thing: yes, I have cancer. Yes, it is considered incurable by current medical treatment (CAR T is a possible cure, but that’s a topic for a different essay). Yes, I am currently NED (No Evidence of Disease; remission, it turns out, while in common usage, is not a medical term). Yes, for a significant period of time — the time I was in primary treatment, the second half of 2020 — it was the focus of my life. But I am not defined by cancer; my life goes far beyond that. I am more than a medical diagnosis. I am more than just someone who was treated for cancer.

Some of this is influenced by my career; for several decades, I taught middle school special education students, students who had a variety of learning disabilities, students who were often identified as “the wheelchair kid” or “the dyslexic kid” or some other identification that reduced them to a diagnosis, and struggled to convince other people to see those students as people first, and not define them by, or as, their disability.

Some of this has been influenced by society. Certain types of cancer are very well known, and they fundraise frequently, which means they advertise frequently. Their advertising helps to drive the use of words like “warrior”, “survivor”, “thriver”, and “fighter” — and not so coincidentally, the idea that anyone with cancer must continue in treatment, no matter what, because winning the “fight” matters; this is a different, but related, issue, which impacts cancer treatment as a whole, as well as how people diagnosed with cancer view themselves, and how they view their journey through treatment. It also impacts how their family and friends view decisions to continue or discontinue treatment, if treatment is ineffective or cancer recurs. It ignores all of the negative effects of cancer treatment on the person being treated, and the reasons a person may have for refusing further treatment.

Some of this is influenced by society as a whole, which also often identifies people by a single characteristic — labels like alcoholic, disabled, poor, or abused, or labels referring to racial, gender, or religious identities, or to marital status. I’ve been divorced for over 30 years, following a seven — year marriage, but to society (and a wide variety of surveys), I am, and will always be, divorced, unless I remarry.

The problem, for me, is not with the categorization, but with the idea that a single category is the sole and only important characteristic. In this case, the idea that my identity is ineluctably and eternally tied to what I call myself following cancer treatment.

Did I survive cancer? So far, I have. But during that same time, I did a lot of other things too, some influenced by cancer, some made more difficult by cancer, and some totally unrelated to cancer. Cancer is part of who I am today, but it does not define me.

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subscribe to CURE®’s newsletters here.

The discussion around self-identification post-cancer diagnosis reveals diverse perspectives, with many opting for terms like "survivor" or "warrior." However, the emphasis on a singular label can overshadow the multifaceted nature of individuals. The narrative challenges the notion of being defined solely by a medical condition, advocating for a broader identity beyond cancer. Societal influences and personal experiences, such as working with students with disabilities, shape this viewpoint. The focus is on recognizing the complexity of identity, which encompasses more than just a cancer diagnosis or treatment journey.

When asked to choose a word other than “survivor” to describe myself, I chose “person” because cancer does not define who I am.

What’s in a Name? How I Chose ‘Person’ Over ‘Survivor’ After Cancer

As I write this, it has been five years — on July 3, 2020 — since my diagnosis of follicular lymphoma, a form of blood cancer, was confirmed. The day before, I had gone to Kaiser’s imaging center for a CT scan. Based on my sinus tachycardia (a high heart rate) and the absence of any other causes after wearing a heart monitor for three days, my doctor suspected a blood clot in my lung — something increasingly common at the time due to the spread of COVID-19. Because of the risk and urgency of treating a possible blood clot, the imaging center had me wait next to a dedicated phone while the technician read the scan.

After a short wait, perhaps half an hour, though it’s a bit hazy now, the phone rang, and my doctor shared the results. It wasn’t a blood clot. The scan had come back as “probable lymphoma, possible leukemia.”

It was completely unexpected. I had undergone a lymph node biopsy the day before, prompted by an enlarged lymph node found by a massage therapist. My doctor had suggested the swelling was likely due to inflammation from the suspected blood clot. Expecting to confirm a clot but instead receiving a cancer diagnosis felt like sitting down for a kids’ movie and ending up in a horror film.

At the time, I knew very little about lymphoma, only that my stepfather had been diagnosed with a form of it (I forget which), and had died halfway through treatment from viral encephalitis, which his immune-suppressed system couldn’t fight off. Based on that limited knowledge, my immediate reaction was terror.

My doctor discussed next steps and explained that the oncology department would be contacting me. Treatment decisions would depend in part on the biopsy results, which might or might not be available before the long holiday weekend. Somewhat to my surprise — that year, as this, July 4 fell on a Friday, and most departments were closed — my doctor called back on July 3 to confirm the diagnosis. Almost immediately afterward, I heard from the oncology department, which asked me to schedule a PET scan at one of two available locations, preferably before meeting with my oncologist on Wednesday. Things moved quickly from there.

I had the PET scan on Saturday, met with my oncologist Wednesday, and underwent a bone marrow biopsy on Friday. The nurse who performed the biopsy showed me my PET scan results and said my oncologist would go over them in more detail once the bone marrow results came back — and that I would be starting treatment the following week. It’s a good thing the nurse told me, because if I was informed any other way, I don’t recall it. A friend had come with me for the biopsy, since I was required to have a driver.

Looking back over the past five years, I realize that more things have returned to normal than not, but some of the things that didn’t are significant. COVID-19 precautions have largely faded into the background, although mask-wearing is far more common than it used to be. I retired; the combination of immune suppression, a pandemic, and teaching middle school seemed like a bad idea, especially considering what happened to my stepfather during treatment. Other than retiring, I’ve resumed most of my usual activities and even added weightlifting. I passed a demanding physical exam for my 6th-degree black belt in TaeKwon-Do, testing alongside a friend more than 20 years younger than me, something I had been working toward since 1987.

But some things will never be the same. Follicular lymphoma, although highly treatable, is considered chronic and incurable. I will never not have cancer, unless there’s a medical breakthrough and a cure, and even then, only if my cancer recurs, which remains an ever-present possibility. I will never stop feeling nervous before my twice-yearly oncology checkups. I will never stop worrying about symptoms that even vaguely resemble those I had before diagnosis: sinus tachycardia (likely caused by inflammation from the cancer but which returns whenever I catch a bug), fatigue, night sweats, and sudden, unexplained weight loss. These symptoms are common to many illnesses, and to aging, which at 59 is becoming more noticeable, but my stress levels are permanently higher than they once were. That’s something many people don’t understand, because remission doesn’t really mean cured.

A diagnosis of follicular lymphoma, a chronic and incurable blood cancer, was confirmed five years ago. Initially suspected to be a blood clot due to sinus tachycardia, the diagnosis was unexpected. The rapid progression from diagnosis to treatment included a PET scan and bone marrow biopsy. Despite the challenges, the individual has resumed many normal activities, including achieving a 6th-degree black belt. However, the persistent nature of the disease means ongoing anxiety about recurrence and symptoms. The experience underscores the emotional and physical impact of living with a chronic cancer diagnosis.

Five years after my lymphoma diagnosis, life looks normal on the outside; however, the fear of recurrence and the reality of cancer never fully fade.

Five Years Since My Lymphoma Diagnosis: What I Know Now

Nearly five years ago, on July 3, 2020, several weeks of tests looking for the cause of a swollen lymph node in my underarm and sinus tachycardia (high heart rate — my resting heart rate was 128 bpm) culminated in a diagnosis of follicular lymphoma, a form of blood cancer that is considered very treatable, but chronic and incurable.

It was only after the biopsy results came back, the day after the CT scan that said “probable lymphoma, possible leukemia”, that I met with my oncologist. My primary care doctor thought my CT scan would confirm a blood clot in a lung, which she suspected was the cause of the sinus tachycardia. It wasn’t. Only then did I discover that my sudden, unexplained weight loss and fatigue, which I had attributed to muscle relaxants prescribed for a back injury, were common symptoms of active follicular lymphoma, as were the sweats that accompanied my almost uncontrollable naps, which I had attributed to the unusually hot and relatively muggy weather.

Some things about my diagnosis were quite common; I know now that sudden, unexplained changes in weight, fatigue and sweats are common indicators of active cancer. Some things were not common; neither my primary care doctor nor the cardiologist she referred me too could find any cause for the sinus tachycardia, although it responded well to medication. Like many people with this form of lymphoma, I was diagnosed at stage 4, meaning there were cancerous lymph nodes above and below my diaphragm, as well as cancerous cells found in my bone marrow; unlike many people diagnosed at a similar stage, I had sinus tachycardia with no apparent cause.

My oncologist thought it was a response to the inflammation caused by the lymphoma that had spread throughout my system. Once I completed treatment, reached NED (No Evidence of Disease — commonly called remission) status, and visited my cardiologist again, who still couldn’t find a cause, we decided to stop the medication and see what happened. It seems my oncologist was correct; even without medication, my heart rate remained in the normal range, where it’s been since then. High heart rate is a common response to inflammation, but apparently, my body went overboard; neither my oncologist nor cardiologist had ever seen that level of response.

Then there was the timing. There’s never a good time to develop cancer, but the middle of the COVID pandemic added all kinds of additional issues. I had to get a COVID test before I could meet with my oncologist for the first time. I was a middle school special education teacher; the schools were shut down, but no one knew how long that would last, so my oncologist recommended medical leave for my entire course of treatment, where normally people can work through such treatment, taking off the two consecutive days per month that treatment occurs, and maybe a couple of extra days to recover. But no one knew, then, how blood cancer patients would respond to COVID infection (which, it turns out, was that they responded pretty badly). I finished treatment and was cleared to return to work — but it was December 2020, there was no vaccine yet, and the schools in my area had returned on a hybrid schedule, so my oncologist would only clear me for remote work.

Remote teaching, I discovered, really sucks, especially when half of the students are in the classroom and half aren’t. That it was January instead of the start of the school year made it even harder. It’s not uncommon for special education teachers to be the second teacher in a classroom, but trying to help students who were physically present while I was remote was complicated, at best. Vaccines were developed, and I had hopes of returning in person, if not that school year, then the next one; however, I then found out, through a research program I participated in with the Leukemia and Lymphoma Society, that blood cancer patients have minimal response to COVID vaccination, if they have any at all. I finally decided to retire two years before I originally intended to; it was financially possible, if I was careful, and it was a choice between my health and continuing to work.

There’s nothing particularly unique about my story, and yet, it’s my story, and it’s unique to me. I am more than a statistic, no matter how my story is reported now or in the future.

A diagnosis of stage 4 follicular lymphoma, a chronic but treatable blood cancer, was complicated by sinus tachycardia and the COVID-19 pandemic. The patient's symptoms, including unexplained weight loss and fatigue, were initially misattributed. Treatment led to remission, and the sinus tachycardia resolved without medication. The pandemic necessitated medical leave and remote teaching, highlighting the challenges faced by blood cancer patients during COVID-19. Despite the commonality of the experience, the personal journey underscores the unique impact of cancer on individual lives and decisions, such as early retirement.

I was diagnosed with follicular lymphoma in 2020, during COVID, which forced me to retire early and taught me I’m more than a statistic.

Karen Cohn

Finishing Cancer Treatment Didn’t Bring the Relief You’d Expect

What’s in a Name? How I Chose ‘Person’ Over ‘Survivor’ After Cancer

Five Years Since My Lymphoma Diagnosis: What I Know Now

When Cancer and COVID Collide: The Diagnosis That Changed It All

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