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

Karen Cohn is a retired middle school special education teacher who was diagnosed with follicular lymphoma in July 2020. Catch up on all of Karen's blogs here!

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.

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