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 

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.

For more news on cancer updates, research and education, don’t forget to 

subscribe to CURE®’s newsletters here.

Articles

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.

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

I'm a blood cancer survivor; in July 2020, I was diagnosed with follicular lymphoma, which is considered highly treatable but chronic and incurable. The societal assumption that a cancer diagnosis is a death sentence is wrong; the overall five-year survival rate is nearly 70%. I was terrified when I was diagnosed because I thought I was going to die — and yet, I'm still here and still in remission. But there's always the fear of relapse, especially as, unlike many hard-tumor cancers, follicular lymphoma is highly likely to recur.

There are lots of articles about cancer - about the risks, about avoiding risks, about preparing to die following a cancer diagnosis. There are relatively few articles about surviving cancer. I know now that there are a lot of factors that impact cancer survival. One of the most significant is stage at diagnosis; the earlier a diagnosis occurs, the greater the chances of survival and the lower the chances of relapse. Recently, I’ve been seeing more articles about life after cancer — about picking up the pieces, if necessary (and it usually is), and going to live your life. When I see such articles, I think about telling my oncologist about plans I had made for a trip, and his answer: “Good. I saved your life so you could live it, not so you could sit at home doing nothing”.

This flies in the face of many stereotypes. People who have not experienced cancer, in themselves or in someone close to them, often picture cancer patients and survivors as seen in ads asking for donations — which often show frail-looking and yet happy people with no hair, wearing masks against the risk of infection. That’s true, and yet, it’s incredibly misleading; yes, I wore a mask during treatment, but I was treated during the height of the COVID pandemic — everyone was wearing a mask. I never did lose my hair; different types of treatment have different side effects.

When I see articles about cancer survivors today, they’re often about adventures the person went on, bucket list trips they took while they still could. But recently, I read an article written by a cancer survivor who went on to live her life — the life that cancer treatment interrupted, rather than a new and different life. Some things were the same, and some things were different. She kept the same job and spouse, and went on a vacation they had planned, but deferred during treatment. The article’s author noted that her basic emotions remained the same; she still loved the people she had loved before, and still enjoyed the same activities, but at the same time, some things about her life were irrevocably changed, such as medical checkups.

No matter how long ago a person was treated for cancer, they will always undergo extra checks for recurrence (back to that idea that early diagnosis leads to better outcomes); no matter how much a person’s life settles back into something approaching normal, there are constant reminders that it might just come back. Hearing someone else say that out loud — admitting that nothing would ever be quite the same again — was something I hadn’t encountered in print before. I have friends who’ve undergone cancer treatment who understand, but it wasn’t something I’d seen in mainstream media before. It had a significant and unexpectedly empowering effect on me, and I quite appreciate it.

A blood cancer survivor shares their journey with follicular lymphoma, highlighting the misconceptions surrounding cancer diagnoses and survival. Despite the chronic nature of their condition, they emphasize the importance of early diagnosis and the potential for remission. The narrative challenges stereotypes about cancer patients and survivors, focusing on the reality of life post-treatment. The survivor reflects on the impact of cancer on their life, acknowledging both the unchanged aspects and the irrevocable changes, such as ongoing medical checkups and the persistent fear of recurrence.

I'm a follicular lymphoma survivor, and hearing others name the quiet, lasting changes of life after cancer made me feel seen and understood.

Karen Cohn

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

When Others say Your Own Thoughts About Cancer Aloud

Latest News