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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.
When I told my friends I started feeling better during cancer treatment, they were all so confused.
There are lots of things “everyone knows” about cancer. Many of them are correct. Some of them are correct for some people but not everyone. Some of them are simply wrong, such as the myth about sugar-feeding cancer cells, and that cancer can be cured and relapse prevented, by avoiding all forms of sugar.
For example, everyone “knows” that cancer treatment is brutal — that it is physically debilitating, often involves surgery to remove the tumor and surrounding tissue, that treatment causes total hair loss, and that, in general in the short term, the cure is even worse than the disease. People expect to suffer a lot during treatment, and before my experience with it, if I’d been asked, I would have expected the same.
There was no surgery needed for my treatment, or perhaps it would be more correct to say that there was no surgery possible; as a patient with blood cancer diagnosed at stage 4, there was no single, solid tumor that needed to be removed — rather, there was lymphoma evident throughout my body, as was clearly visible when I was shown my PET and CT scans, both of which lit up pretty much everywhere. I was given a fairly typical treatment regimen for follicular lymphoma, which consisted of a chemotherapy drug given on two consecutive days, and an immunotherapy drug given on one of those days; this was repeated every 4 weeks for six rounds.
Relative to what people expect, this was a pretty mild treatment, with minimal side effects, which were a significant improvement over my symptoms. It consisted of pain from some of the enlarged lymph nodes, irresistible fatigue, daily (or more) episodes of soaking sweats so bad I had to change clothes and clean whatever I’d been sitting on, and unexplained, sudden weight loss — so sudden that I lost roughly 30 pounds in two months. As is fairly common for follicular lymphoma, which is considered an indolent (slow-growing) blood cancer, no one knows how long it had been growing, because until after it was widely spread, there were no symptoms, but my oncologist believes it had likely been spreading for between five and 10 years.
In contrast, on the days I received treatments, I was tired, but with the steroids given with the chemotherapy drug, I didn’t sleep well, so I was tired the next day too. The anti-nausea medication I was given worked incredibly well but caused constipation for a couple of days afterward. My hair thinned a little around my hairline, but it was really only noticeable because I was looking for it when I combed my hair, at which point I saw that there was more hair in the comb than usual. Under ordinary circumstances, I would have been able to continue working full-time, but because it was July 2020, and my oncologist wasn’t sure what would happen if I caught COVID-19, he recommended medical leave, which my school district approved. I was bored at home alone, but my stress level dropped way down because I wasn’t at school with my coworkers, trying to keep up with the evolving methods being used to teach during the pandemic.
All of the side effects I had experienced due to widespread, active lymphoma vanished within a week of the first treatment. The side effects of treatment were so mild, by comparison, that I felt considerably better during treatment than I had felt before it. This was a concept that most people had trouble understanding. When my friends would ask how I was feeling, and when I told them, I got some puzzled responses. How could I possibly feel better during cancer treatment?
Everyone “knew” my hair was going to fall out, so what did I mean when I said it wasn’t going to fall out? Wasn’t I receiving chemotherapy? Didn’t all forms of chemotherapy cause your hair to fall out? What did I mean I felt better? How could I possibly feel better during cancer treatment?
But I truly, honestly did. And no one — no one at all — understood it. I’m still not sure I understand it myself. Maybe it was the relief that came with a diagnosis, after rather nebulous symptoms. Maybe it was knowing that feeling better meant that treatment was almost certainly working. I don’t know, I really don’t. But that’s what happened. I can only hope that other patients with cancer out there have similar experiences and that their friends and family will understand when they tell them about their own experiences.
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