By Associate Professor Jay Baglia
When receiving a life-altering diagnosis, patients are rarely as concerned with the treatment as they are with the prognosis. Chemotherapy is a notable exception. Contemporary treatment for cancer is both more aggressive and shows increased rates of survival. As a result, a new area of oncology scholarship has emerged focusing on “late effects."
Because of television and film's persistent depictions of the cancer experience—Love Story (1970), Terms of Endearment (1983), Thirty-something (1987-1991), Wit (2001), Breaking Bad (2008-2013), 50/50 (2011), The Fault in Our Stars (2014), Alexa & Katie (2018-2020)—Americans are familiar with the pernicious side effects caused by treatment, chemotherapy in particular.
Among the side effects we recognize are hair loss, nausea, fatigue, and infertility. Indeed, when I was diagnosed with Stage IV non-Hodgkin's lymphoma in 2018, I was aware that as soon as my oncologist said “six cycles of chemo" I was in for this litany of somatic ramifications. In short, before I began to feel better, I was going to feel (and look!) a whole lot worse. What I was not prepared for—and what no one told me about in the multiple education sessions prior to beginning six cycles (18 weeks) of chemotherapy—were the cognitive challenges generated by this treatment.
Twenty-five years ago, no one talked about chemo brain (also referred to, less frequently, as chemo-fog). Or, if they did, it was to reject it as unsubstantiated or worse, an outcome of a patient's imagination. Perusing the indices of self-help books for cancer patients and their families from the 1990s—Oncology: Pocket Guide to Chemotherapy, Cancer Caregiving A to Z, Toxicity of Chemotherapy, and The Cancer Dictionary—I located not a single reference to chemo brain, chemo-fog, or any cognitive changes at all. In the years since, however, researchers have verified changes to the brain and scores of academic articles have attempted to trace its etiology. Because chemo brain manifests differently in patients, researchers represent this range as “chemotherapy-induced cognitive impairment." And the range of how this cognitive impairment is experienced is wide. Namely, patients report memory loss and forgetfulness, inability to take in new information, a lack of concentration, confusion, a feeling of being in another zone, dexterity disturbances, and becoming more emotionally reactive. Published studies are clear that patients are reporting these as significant changes to their prior selves. After all, most of us wander into a room and forget why we went there or stumble for word choice from time to time. These patients are describing substantive changes. In many instances, these perceptions are substantiated by significant others and family members.
There is no question my own experience with chemo brain was at its worst from about midway through my treatment until about six months after my treatment. But I also concede I still experience it. This is not surprising. Existing scholarship reports that chemo brain can last for up to ten years post-treatment. Fortunately, I've developed some practices to help offset the phenomenon. During treatment I found it extremely difficult to track a conversation involving more than two people; this included scenes on television shows. Within seconds I could become confused about who said what to whom. After treatment and back in the classroom, managing the to-and-fro of graduate seminars was equally challenging.
What I am doing in my current research is focusing on how cancer patients talk to oncology nurses about chemo brain. While I like my oncologist very much, I did find her to be unsympathetic to any side effects which were not measurable. Chemo brain and insomnia, for example, are difficult to quantify. My oncology nurses, on the other hand, were a wealth of information and support as I discussed with them how exasperating I found my cognitive changes. As anyone who works in healthcare knows, nurses spend far more time with patients than do physicians. Nurses not only validated the reality of my particular descriptions of chemo brain, they also talked about what other patients reported –as well as ways to deal with it. For example, I was encouraged to write everything down. Never mind that my handwriting (along with my guitar playing) during chemotherapy deteriorated significantly (see “dexterity disturbances" above). As someone who had always been able to manage multiple projects at once, my oncology nurses urged me to focus on one thing at a time and never for too long (more short stories, fewer novels).
Talking to patients and oncology nurses about this kind of interaction and validation advances contemporary scholarship in this area by applying the concept of “communication alienation" to a specific side effect. Communication alienation is the idea that others who have not been diagnosed with a similar condition cannot understand or empathize with a patient's life world, especially with the aspects related to identity.
The COVID-19 pandemic has brought the less treatment-specific expression of brain fog into our consciousness. Particularly ascribed to long COVID, this brain fog carries with it many of the variations described above: confusion, memory loss, emotional reactivity. Furthermore, sufferers of auto-immune diseases also frequently report brain fog. In her best-selling personal narrative of having an auto-immune disease, The Invisible Kingdom: Reimaging Chronic Illness (2022), the poet Meghan O'Rourke encapsulates communication alienation thusly: “when I write 'brain fog,' I imagine that your mind slides over the idea, unless you, too, have suffered from it" (53).
So, what do chemotherapy-induced cognitive impairment, long COVID, and auto-immune diseases have in common? You guessed it. Suppressed immune systems. And it turns out that when our immune systems are forced to work harder, this extra exertion has a direct connection to our cognition. Cytokines are proteins that have an important role in immune response. Chemotherapy assails cancer cells to be sure but likewise assails those healthy white blood cells called leukocytes, which are the cells of our immune system that protect us against infection. The brain will often interpret the immune system response as stress, and stress—as we know—greatly inhibits our ability to concentrate; this results in a range of cognitive impairment described above. Furthermore, Doxirubicin, one of the ingredients in my chemo cocktails, is now considered to be the specific chemical which contributes to cognitive impairment.
I'll leave the problem-solving of decreasing the impact of chemotherapy to the neurologists and psychopharmacologists. In the meantime, through my research, I hope to gain a better understanding of how oncology nurses support cancer patients by listening, validating, and putting them in touch with some ways to address chemo brain.
Jay Baglia is an associate professor in the College of Communication with a focus on health communication, gender communication and performance studies. He is the director of the MA in Health Communication program.