How Cancer Impacts the Perception of Illness

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 — remission — in December 2020.

Last week, around Wednesday or Thursday, I started to feel sick. I mostly felt pain in the back right corner of my tongue that came and went. Then my throat started to feel a little sore. I thought it was allergies, until Saturday, when I woke up with a mild fever. A cold, I figured, right up until Saturday afternoon, when it turned into a headache that extended into my neck, and a serious case of shivers. I took my temperature, and it was high: 102 degrees Fahrenheit.

So I did what most people did, and I took some ibuprofen, my preferred anti-inflammatory. I live alone, so I contacted a friend to check on me. Then I realized that my neck hurt because the lymph nodes were swollen: the reason my tongue hurt. Now, this is a pretty common symptom for many people.

It’s also a symptom of lymphoma because white cells (the infection fighters) are the mutated cancer cells. Because they’re mutated, instead of being filtered by the lymph nodes, they pile up and get stuck there. So when my lymph nodes swell, even if I have a reasonable, non-cancer explanation, it freaks me out.

Intellectually, I knew they were swollen from an infection. The fever made that pretty obvious and also explained the shivers. It didn’t help that I woke up later that night sweating — night sweats are another symptom of lymphoma. Emotionally, I was not tracking that well.

Adding in the stress of an upcoming oncology check, this coming Thursday (today is Tuesday), and I am seriously stressed. This is my first oncology visit without a scan, which means that the only indicators my oncologist will have are the physical exam and the blood work. The physical exam is going to show swollen lymph nodes, unless they go down completely by then, and my blood work, which I’ve already gotten back, shows elevated levels of pretty much every type of white cell, which fights infection.

My white cell counts have been low since I was treated because the treatment I was given was designed to kill off a particular type of white cells, called B-cells since they were the cancerous cells. Now they’re pretty much all in the normal range, because the infection triggered a significant increase, which is what is supposed to happen, so that’s good. But it could also indicate a relapse, which would be really, really bad.

Again, intellectually, I know that it’s almost certainly due to the infection. This is how your body is supposed to react to an infection. My emotional response, however, is completely irrational, a complete, gibbering fear that the cancer is back. Or that the intersection of symptoms will make it impossible for my oncologist to be certain that infection, rather than relapse, is the cause, and I’ll have to wait days, probably weeks, for the infection to clear my system and get new testing done. Even that might not be conclusive.

Remission is a wonderful thing. But many people I know don’t understand why I still worry about relapse because I was treated, cured and that’s it. But it’s not. It’s a constant source of stress, wondering if any little change is the one that signals a relapse. I’ll know more after my oncology appointment, but I may not know enough. And even if my oncologist is sure, I don’t know that I will be.

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