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 

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.

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

subscribe to CURE®’s newsletters here.

Articles

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.

When Others say Your Own Thoughts About Cancer Aloud

Everyone has stress in their lives. For people dealing with cancer, that’s an added stressor that can tip things right over the edge. When I was first diagnosed with follicular lymphoma, a chronic and incurable — but very treatable form of blood cancer — in July 2020, my stress level went through the roof.

My stress level dropped through the treatment process but ramped back up near the end because I had been so focused on getting through treatment that I wasn’t sure what to do next; the energy that had sustained me through the process fell off and left me with nothing. The social worker at the oncology center was very helpful with that — but no longer available now; first, the one I worked with retired, and second, the person is there to help patients deal with treatment, not with the stresses of life in general.

I finished treatment in December 2020 —over four years ago now. Then I had another year of maintenance treatments — where my cancer treatment was a chemotherapy drug and an immunotherapy drug given on two consecutive days every four weeks (the chemotherapy drug both days, and the immunotherapy drug only on the first day); maintenance was the immunotherapy drug only, given every eight weeks; that finished about three years ago.

It was about four years ago, December 23, 2020, that I was officially declared to be NED (No Evidence of Disease — a clinical term for in remission).

Like most patients in remission, I still see my oncologist regularly. At this point in time, I see him twice a year, both times with blood work, and once a year with a CT scan. He always asks if I’ve had any symptoms, and sometimes it’s hard to know. One of my primary symptoms was fatigue, leading to significant sleepiness in the afternoon, and often an irresistible urge to nap (it was summer, I was a teacher, and it was very hot, so I didn’t think much of it at the time).

This is a tricky symptom to track — not because I don’t get sleepy some days, but because there are so many reasons it can happen. At 58, sometimes I just don’t sleep well — but oddly, the day after I don’t sleep well is rarely the day I feel daytime sleepiness; it’s often the day after that, no matter how well I slept on the intervening night. Determining if my sleepiness is due to illness, poor sleep, overexertion, or the dreaded relapse is a stressor that I could really do without — but it exists, and there’s nothing I can do to change that. The risk of relapse is 2 to 3% a year — less than four years after treatment, but still higher than someone who’s never developed it, and I can’t forget that. The stress of that concern by itself can cause sleeplessness, which creates an ongoing cycle of daytime sleepiness, which is then compounded by stress, and so on.

This is added to the stress of life in general — all the stressors that everyone experiences. Those who have chronic health conditions — cancer or otherwise — generally understand, but those who don’t often ask why I worry about it after “so long”; after all, it’s been four years, it hasn’t come back, why would I worry?

But — like cancer patients everywhere — I know that the risk of relapse, or of some other form of cancer triggered by treatment, is higher for me than for anyone who’s never been treated for cancer. This is, of course, why cancer survivors are monitored, effectively, forever. The time between checks gets greater over time, but it never really goes away forever — and that’s a stressor in itself.

Cancer diagnosis and treatment introduce significant stress, which can persist even after remission. Patients often experience anxiety about potential relapse and the long-term effects of treatment. Regular follow-ups with oncologists are crucial for monitoring, but they also serve as a reminder of the ongoing risk. Symptoms like fatigue can be difficult to attribute solely to cancer, adding to the stress. Despite being in remission, the fear of recurrence and the need for continuous monitoring remain constant stressors for cancer survivors, impacting their overall well-being.

Four years after remission from follicular lymphoma, ongoing fear of relapse, lingering symptoms, and life stressors continue to weigh heavily on me.

Lingering Stress After Follicular Lymphoma Remission is a Challenge

From a medical perspective, remission means a period of time during which the symptoms of a disease disappear; it most emphatically does not mean “cure”, which is the way it is often used by people who have never experienced an incurable illness. Even injuries may be described as being in remission; no matter how well healed, indications of the injury may come back years, even decades, later — that “weather-wise ache” in a long-healed broken bone, for example.

In June 2020, I was diagnosed with follicular lymphoma, a form of blood cancer that is considered highly treatable, but chronic and incurable. I underwent treatment that successfully led to remission (more commonly called No Evidence of Disease — or NED by oncologists) during the second half of 2020, but in many ways, it’s still with me.

First, blood cancers, by their very nature, are hard to eradicate; there is often no tumor to remove, and since blood goes everywhere in the body, treatment has to go everywhere in the body too; even one missed, mutated cell can lead to a recurrence in the future.

Second, because of that, I still see my oncologist every six months; in fact, I need to call today to schedule my next appointment, because I’m due to see him in three months, and the oncology center is busy. They open the scheduling calendar for three months at a time, so routine appointments need to be made well in advance. Every other appointment (the one in mid-winter) I also need to schedule a CT scan — which needs to be done as soon as my oncologist approves it, usually at my mid-summer appointment — so it’s always on my mind in some fashion.

As I approach the five-year mark — yay! I can only hope that results continue to be negative — that I am still NED — because successive types of treatment tend to be harder to endure. I have no reason, on this bright spring day, to expect that it will be anything else, but I also know that I had no symptoms until a month or so before diagnosis, and my oncologist’s estimate is that the lymphoma had been growing and spreading (it was pretty much everywhere) for 5 to 10 years before that.

And yet, so many people who haven’t dealt with cancer, or other incurable illnesses — and even some who have — don’t understand how fear of relapse can always run lightly in the background, or sometimes not so lightly. For the first year, most cancer patients get checked every two to three months, then every six, and finally, after five years (if they get that far without relapse), annually. That need for regular check-ups, above and beyond the annual physical that so many people don’t get anyway, tends to keep your attention on the risk of recurrence. That makes it hard to move on and let go — advice that my friends give me, and that they often don’t understand why I can’t take.

Remission in medical terms signifies a period where disease symptoms vanish, but it doesn't equate to a cure. This distinction is crucial for chronic conditions like follicular lymphoma, a treatable yet incurable blood cancer. Despite achieving remission, patients remain vigilant due to the persistent risk of recurrence, necessitating regular oncologist visits and scans. The fear of relapse is a constant undercurrent, challenging patients' ability to fully move on. Regular monitoring is essential, as even a single mutated cell can trigger a recurrence, underscoring the chronic nature of such diseases.

It’s spring, a time for new beginnings following a cancer diagnosis; however, I have an ongoing issue that I can’t dismiss.

Karen Cohn

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

When Others say Your Own Thoughts About Cancer Aloud

Lingering Stress After Follicular Lymphoma Remission is a Challenge

Remission is Not a Cure for Follicular Lymphoma, or Any Cancer

Latest News