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 

There’s a famous quote by Friedrich Nietzsche that says “That which does not kill us makes us stronger.” I have follicular lymphoma, a form of blood cancer that is considered very treatable, but chronic and incurable. I was diagnosed in July 2020 and declared to have no evidence of disease, known as remission, in December 2020.

This idea comes up in cancer treatment a lot, the idea that surviving cancer — and particularly, surviving cancer treatment — makes the patient a stronger person. There’s a lot of toxic positivity that can come up in conjunction with that idea, and it can be very hard to deal with. But the truth is different.

I spend time, perhaps too much time, on Facebook, in part because I was diagnosed during the COVID-19 pandemic and had to isolate even more than most people. While paging through Facebook the other day, I found the answer to that quote, that said the following:

“Trauma doesn’t make people stronger. It damages their nervous system. It hijacks their digestive tract. It keeps the person in a constant loop of hypervigilance. To tell someone they are stronger because of trauma is to deny what it has cost them to survive.”

This struck a chord with me. It resonated with me in a way that answered every person who ever told me any variation on that quote, those who told me cancer was a learning experience and those who told me that however hard treatment was, I’d come out the other side a stronger person for the experience. In large part, these are the same people who told me that they don’t understand why I didn’t just revert to the person I was before diagnosis, why I didn’t just step back into the same space I occupied before diagnosis.

I’m not the same person I was before. There are some things I can identify. For example, I’m far more concerned about the risk of communicable illnesses than I was before I was given cancer treatment that tanked my immune system. Minor symptoms of illness or age (which, at 58, are themselves becoming known with more frequency than I’d like), especially those that in any way resemble the symptoms of my cancer, leave me nervous for days until they clear up or some other obvious cause appears, such as illness.

Am I stronger than I was before? I don’t know. In some ways, maybe. I know that I can survive a cancer diagnosis and subsequent treatment. At least the treatment I was given, which was, relative to such things, pretty mild. In other ways, the trauma is very apparent, in my reaction to even minor changes in my physical condition and in my stress level any time I get routine testing for monitoring (I’m still getting annual CT scans). Even though I have no discernable symptoms, the week between the scan and getting the results is nerve-wracking, a syndrome called scanxiety. Some of it is getting better over time and some it isn’t; knowing that the form of cancer I have is prone to relapse at random times. It is less frequent as time goes on, but still a distinct possibility, which doesn’t help with that.

But I do know that hearing that quote, or anything like it, does not come close to being beneficial.

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Articles

A cancer survivor reflects on the notion that enduring cancer treatment makes one stronger, challenging the idea as a form of toxic positivity. The author, diagnosed with follicular lymphoma, shares personal experiences of trauma and anxiety, particularly around health concerns and routine testing. The narrative highlights the lasting impact of cancer on mental and physical health, questioning the validity of the belief that trauma inherently leads to personal strength. The survivor emphasizes the importance of acknowledging the true costs of surviving cancer.

I’ve heard that trauma doesn’t make people stronger, and I’ve found that after cancer, I’m not the same person that I was before. 

My Traumas Associated With Follicular Lymphoma 

I have follicular lymphoma, a form of blood cancer that is considered very treatable, but chronic and incurable. I received that diagnosis in July 2020 and was declared to have no evidence of disease (NED; remission) in December 2020. 

Once upon a time, doctors were generalists. You got sick, you went to your doctor, who examined you. Then, if needed, they treated you. As medical care has grown more complex and as medical practitioners become more specialized, it is vital that people advocate for themselves and their medical needs. Many doctors practice their specialty in relative isolation, and communication between practitioners doesn’t always happen the way it should.

For some people, it’s not a problem; my health insurance is through an HMO system, and all of my records are in the same system. Any practitioner I see can view anything in my records, and as far as I’m concerned, that’s a good thing. When I wanted to see an immunologist following cancer treatment, the immunologist was able to see all of my records without anything having to be transferred, copied, faxed or emailed. It was all right there.

When my oncologist wanted to see what the immunologist had found again, it was all right there. But this doesn’t negate the need for self-advocacy. I did, after all, have to ask for a referral to the immunologist when I was concerned about my immune system not rebounding properly — or possibly at all — following treatment, a common issue with blood cancers.

There are other issues that can come up as well. Over the past five years, I have seen two different primary care doctors (the one who diagnosed me retired a couple of years ago), an oncologist, a cardiologist, a dermatologist, an immunologist and a variety of nurses and techs, for services ranging from immunizations to a variety of scans (CT, PETand mammograms).

Yes, they all have access to the same information, but that doesn’t mean that they all have reasons to look at all of it, much less to integrate it into a larger whole. It also means that if something doesn’t make it into the computer system, that piece of information is lost forever. 

Even if the information is there, there’s no guarantee that the next practitioner will interpret it the same way, or even see it. The testing the immunologist did showed that I had no response to the pneumococcal vaccination, but I had to ask my primary care doctor for it, or she wouldn’t have noticed that particular test result — after all, it wasn’t testing she’d ordered.

Then there is input from outside the medical establishment: friends, family, the media, etc. There is so much information out there, and so much of it is wrong, misinterpreted or applied incorrectly. Sorting through information and vetting sources to know what information is valid and applicable is hard, and knowing what to ask for, and when, adds a lot to the stress of trying to self-advocate. 

There are so many things “everyone knows” that are wrong, and yet widely accepted. There are also a lot of desperate people out there, for whom treatment was ineffective, looking for anything that will give them hope, and recommending it to others.

Anyone who has a significant medical issue, whether it’s a one-time injury, a permanent chronic condition, or anything in between, runs into these issues with self-advocacy. It’s one more stressor in a list of stressors. 

Patients should always tell their medical providers anything they feel, or anything that’s changed, because the patient may make connections that no one else sees, or see some snippet of information that triggers something else, something beneficial. Yet, it can seem like one more thing that needs me to think about cancer when I’d rather think about anything else.

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

Navigating the complexities of modern healthcare requires patients to actively advocate for themselves, especially when dealing with chronic conditions like follicular lymphoma. Despite advancements in electronic health records, communication gaps persist among specialists, necessitating patient vigilance. Patients must ensure that all relevant information is shared and interpreted correctly by their healthcare providers. Additionally, the influx of external information from non-medical sources can complicate decision-making, emphasizing the importance of discerning credible information. Self-advocacy remains a crucial, albeit stressful, component of managing significant medical issues.

Even if care teams have all of your information on their end, advocating for yourself is still necessary during cancer treatment.

The Need for Self-Advocacy During Cancer 

I have follicular lymphoma, a form of blood cancer that is considered very treatable, but chronic and incurable. I was diagnosed in July 2020 and was declared to have no evidence of disease (NED; remission) as of December 2020.

Every so often, the topic of remission comes up. Remission is, after all, the goal of cancer treatment, and the longer, the better. People who haven’t dealt with cancer often think that remission is an either/or kind of a thing: either you’re in remission, which means you were cured, or you’re not.

But many types of cancer, follicular lymphoma among them, are not curable. Even if patients reach remission, they often relapse and need a different, and often more debilitating, form of treatment. This leaves survivors in a state of constant, low-grade fear, which can be pretty stressful — especially when anything even vaguely resembling a previous symptom occurs.

I had several “B” symptoms before diagnosis. “B” symptoms are side effects of cancer and look different for different people. Mine were sinus tachycardia (high heart rate), fatigue which caused unexpected naps, sweats (usually called night sweats, because they tend to happen during sleep — mine tended to happen during naps), and sudden, unexpected weight loss.

The first three tend to occur any time I get sick; my resting heart rate rises, I get tired and if I have a fever, I sweat. I can usually dismiss concerns about those with a thermometer. If I have a fever, I can calm myself down by waiting a few hours to see if the fever breaks, or if it’s high enough or lingers a bit, I take Advil (my preferred fever medication).

That leaves weight loss, and that’s an issue. There’s a lot of press about weight loss in general, and recently, with the introduction of GLP-1 medications, there are even more articles about weight loss, and therefore more discussions about weight loss.

I lost some 15% of my body mass in two months prior to diagnosis, and until I was diagnosed, there was no apparent reason, except that I’d injured my back and wasn’t eating as much. Per my oncologist’s instructions, and due more to treatment than any change in habit on my part, I regained some of the weight. After all, I hadn’t done anything to lose it. Once treatment started, the cancer was less active and then indetectable, and I started to regain it. Regaining weight under those circumstances, it turns out, is easy — a little too easy — and now I want to lose at least some of it again.

Here’s the problem with that: sometimes I lose weight and don’t know why. I’m sure many people have experienced this. Some days no matter what you eat, you lose weight, and others, no matter what you eat, you gain weight. When I lose weight and can’t explain it, I tend to freak out, even several years later, and then I eat too much to see if I regain some, just to be sure. It’s getting better over time, but weight loss — a struggle I had before cancer — is becoming a real issue. I’m back where I was before diagnosis, and I was trying to lose weight then.

Now I have stress issues around weight loss too, approaching post-traumatic stress disorder (PTSD) level, which makes it a real struggle. My closest friends understand, but it’s still just enough of a stress-inducing topic that it’s hard to discuss with my primary care physician (PCP), who brought it up at my last physical. The PCP who diagnosed my cancer retired after I completed treatment, and it was just more than I could manage to explain all of that to the new one. It’s complicated because my oncologist and the PA both said that I’m good where I am. Or at least, the last time I asked, which was about 8 pounds lighter. Maybe next year, I’ll be up for that discussion. Even better, maybe I’ll have managed to lose some of the weight I regained. In the meantime, I’ll do the best I can to eat properly, continue exercising and try not to obsess over my weight.

Living with follicular lymphoma, a chronic but treatable blood cancer, involves navigating the complexities of remission and the fear of relapse. Remission does not equate to a cure, and patients often face ongoing anxiety, especially when experiencing symptoms reminiscent of their initial diagnosis. Weight fluctuations, particularly unexplained weight loss, can trigger significant stress, sometimes approaching PTSD levels. This stress complicates discussions with healthcare providers, especially when managing weight becomes a concern. Balancing treatment outcomes with personal health goals remains a challenging aspect of living with this condition.

Whenever I get sick, I experience a few side effects that usually go away, but unexplained weight loss becomes a problem for me.  

My Unexplained Follicular Lymphoma-Related Weight Loss 

I have follicular lymphoma, a form of blood cancer that is considered very treatable, but chronic and incurable. I was diagnosed in July 2020 and declared to have no evidence of disease (NED; in remission) ever since December 2020.

Recently, I’ve been getting a little lonely; I’m retired, and most of my friends work, which limits their time. I’m far enough out of treatment, and I’ve been sufficiently reassured by the immunologist who assessed me, that I’m more willing to mingle with people I don’t know. Without a job, though, it’s harder to meet new people than it used to be, so I finally joined Meetup and went looking for crafting groups, because I enjoy fiber arts — crocheting, mostly — but also cross-stitch and needlepoint, and one of these days, I’m going to practice knitting enough to make it stick.

One of the groups I found is a fiber arts group that meets on a drop-in basis at a local coffee shop for several hours, and I’ve been several times. The last time I went, a few weeks ago, I met another cancer survivor. I forget how we got on to that topic, but somehow, we found ourselves discussing medical diagnoses and the difficulties in dealing with chronic cancers. In contrast to my own situation, this other person has a slow-growing, incurable form of liver cancer that is kept in check through periodic treatments, which started with surgery to remove as much of the cancer as possible. In the course of explaining the course of treatment, the other person asked how my surgery went, and seemed quite startled to find out that I hadn’t had surgery, and even more, that surgery is not a given for cancer treatment.

I’ve learned far more about cancer, and cancer treatments, in general, and lymphoma specifically, than I ever wanted to know. It’s the way I am; when I want to know about something, I start to research it, and the research can take me off into various tangents. I know other people learn differently, and some don’t do any research at all, but still, it was quite a shock for to me find out that this other person knew nothing about any other forms of cancer but the one they were being treated for, and assumed that all types of cancer were treated exactly the same way.

At this point, I expect people without direct experience with cancer to have assumptions rather than information, but until this encounter, I expected that other people with cancer would at least have talked to a few other people with cancer — in the oncologist’s waiting room, if nowhere else —and realized that not everyone else was following the same steps. That others might not garner at least a little general cancer information along their journey had never occurred to me, and it set me back. I’m not really sure why; I guess it’s because, like many people, I expect others to react kind of the same way I do. When this person didn’t, it made me second-guess my own actions, and I’m still not sure what, if anything, I want to do about it. So far, I haven’t done anything.

Recently, I met a fellow cancer survivor but after talking with her about cancer, I realized she had a different perspective than I did.  

Karen Cohn

My Traumas Associated With Follicular Lymphoma

The Need for Self-Advocacy During Cancer

My Unexplained Follicular Lymphoma-Related Weight Loss

Meeting New People and Finding Old Assumptions After Cancer

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