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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.
The militaristic terminology of “fighting a disease” does not sit well with me. After being diagnosed, I wasn’t fighting. I was reacting.
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 be NED (no evidence of disease, also known as remission in December 2020).
I belong to various online forums for cancer patients. One of them recently asked, “What does the phrase ‘fighting cancer’ mean to you?” I started thinking about it and realized that I don’t like it. The connections to war, to winning at any cost, are kind of disturbing to me. There are negative connotations to that, I am sure, are not intended, but they put an enormous amount of unneeded pressure on people in various stages of cancer diagnosis, treatment and survival.
The military terminology just doesn't work for me, and it's an issue that goes beyond cancer into the wider world of medicine. So many people are kept alive in a state they would not have chosen — in a coma, in severe pain, with significant medical supports, etc. — in the name of "fighting" death. The terminology around death, particularly in phrases such as "lost the fight" is a problem; it assumes that no matter how much medical intervention was provided, anyone who dies (or, by extension, experiences relapse or doesn't reach remission) did something wrong, and that’s just not so. Medical technology is constantly evolving and changing, and treatments that didn’t exist a few years ago are changing outcomes in a wide variety of illnesses and injuries.
When I was diagnosed, I was in shock. I wasn’t thinking about “fighting,” I was numbly going wherever I was told to go, doing whatever my medical team said: getting more tests done to pinpoint the stage and grade of my cancer so a proper course of treatment could be determined, getting baseline testing done so the effects of treatment could be better tracked, filling prescriptions and buying over-the-counter medications intended to minimize the effects of treatment, contacting my principal and arranging for medical leave, trying to field the questions and concerns of those around me, doing research so I’d have some idea what was going on and what my options were, and so many more things too.
I wasn’t fighting; I was reacting. In some ways, I was barely coherent.
For me, cancer treatment isn’t a fight, it’s a journey. That’s probably truer for cancers such as mine, which is considered very treatable, but chronic and incurable, because even with reaching NED following my first (and hopefully only) course of treatment, there’s always that nagging thought in the back of my mind that it might come back. My oncologist was very clear that he didn’t treat me so I could stay at home and hide from possible issues, such as infection — cancer treatment tends to tank the immune system, and I was treated during the height of COVID, before there was an effective vaccine. He treated me so I could live my life. Like any journey, there are destinations, with diversions, steps backwards and forwards, side trips and missteps. But the journey goes on, even if it’s altered in ways that were never previously considered. For me, a journey is far better than a fight.
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