Chemo Brain and The Conspiracy of Silence

Prior to starting a regimen of CHOP chemotherapy at Memorial Sloan Kettering Cancer Center in New York City, I sat down with my oncologist’s nurse who briefed me on some of the things I should expect from treatment, such as mouth sores, nausea, and other delightful stomach ailments that I had to look forward to. Never did she mention a word about post-chemotherapy cognitive impairment, also known as chemo brain.

Should you stop random people on the street and ask them what they think of when they think of chemotherapy, they will invariably rattle off some of the more commonly known side effects: nausea, vomiting, and hair loss. What is so exceedingly odd about this is that oncologists and oncology nurses appear to look at the side effects of chemotherapy in a fundamentally very similar way; as they are extremely focused on the short-term side effects, while completely ignoring the much more damaging and deleterious long-term side effects.

Following my first cycle of CHOP, I noticed that my brain was extremely foggy. Indeed, it was almost a feeling of intoxication. Six months after my last cycle, and I still feel that there are unequivocally times when that fogginess returns, and my concentration span is not what it is supposed to be.

While in treatment, some of the chemotherapy nurses who happily injected me with toxicity, would occasionally mention chemo brain, as if in jest. It became quite clear to me that their idea of chemo brain is three or four days of spoonerisms, and forgetting where you parked your car. (I don’t have one).

This base and degenerate behavior is either indicative of the most appalling ignorance, or a deliberate and sinister attempt at concealing from cancer patients the risks that certain types of chemotherapy can pose to mental acuity and cognitive function.

The beauty writer and editor Deanna Pai, describes her experience with chemo brain in New York Magazine: “A few weeks into chemo, I began to make odd mistakes. I switched similar-sounding words, like “with” and “which.” Sometimes, I’d find random half-sentences in my stories, and I’d quickly backspace, backspace, backspace before anyone noticed. Once in a while, I just wrote nonsensical stuff, like ’hair blow dryer could possibly what.’”

Apparently, my traumatic experience of discovering chemo brain entirely on my own is not unique. In a discussion about chemo brain on the website The Cancer Forums, Archer1019 writes:

Hi all. First time posting here. I was diagnosed with stage 3 grade B NH Follicular Lymphoma. Swollen gland in my neck turned out to tell the tale after a routine annual…exam. Just started RCHOP June 1 and after coming off the prednisone I feel foggy daily. Did a little web exploring and found out about Chemo Brain.

Article 9, of the Sloan Kettering Patient Bill of Rights, states that as a patient you have the right to: “Receive all the information that you need to give informed consent for any proposed procedure or treatment. This information shall include the possible risks and benefits of the procedure or treatment.” It is regrettable that Memorial refuses to follow their own guidelines in this matter.

In a forum devoted to chemo brain on the website, lintrollerderby writes:

I had four rounds of Taxotere and Cytoxan and can say that it definitely caused (seemingly) permanent chemobrain. I’m five years out and still have long-term loss of my short-term memory which was excellent pre-chemo, inability to focus, inability to multi-task (used to be a strong suit of mine), frequent word drop issues, etc. I’ve been upset for years that I have continuous issues. It’s one thing if I’d given informed consent, but it was never mentioned to me that this might never go away.

When I tried to talk about chemo brain with my former oncologist, he was characteristically dismissive, and questioned the notion that chemotherapy could bring about a deterioration of one’s mental acuity. When I persisted in attempting to discuss the matter with him, he sneeringly replied, “If it weren’t for chemotherapy, you’d be dead right now.”

This villainous and uncivilized behavior only serves to further degrade and debase an already frightened patient, as if suddenly realizing that one’s mind were not functioning properly, wasn’t already a terrifying thing for anyone to experience.

On The Cancer Forums website, RockyMiranda writes that following chemotherapy:

Then my verbal vocabulary started being affected… This worried me more than anything. I would be trying to have a conversation, and sitting there trying to grasp for what should have been a very common word for me to use. I stumbled in my conversations trying to find other words to use. Sometimes, because I’m a visual person perhaps, I can picture the word, or the image the word evokes in my min[d], but I just can’t say it.

Despite the barbarous and treacherous denials on the part of many nurses and oncologists at Memorial, there are increasing numbers of physicians and scientists that are taking the side of those who have experienced a deterioration of their mental acuity following chemotherapy; and who are arguing that it is the chemotherapy itself which has brought about these cognitive changes, and not stress, sleeplessness, and anxiety.

The geneticist Dr. Viatcheslav Wlassoff writes in the publication Brain Blogger:

Although cancer chemotherapy does work very well for many cancer patients, most certainly it can also cause dangerous and permanent brain damage. Chemotherapy can change how the brain works through changing the level of neurotransmitters. It can even change the structure of the brain, reducing its volume and reducing grey matter in the brain. Eventually this leads to cognition impairment which is strongest shortly after finishing the chemotherapy but can persist for decades after.

Prior to commencing with the CHOP, my nurses at Memorial spoke to me at such length about mouth sores, yet after six months of chemotherapy I failed to get a single mouth sore. How can any sane person argue that it is more important to disclose the dangers of mouth sores, than to disclose the real possibility that one’s mental acuity may be degraded due to exposure from high levels of toxicity?

Since pharmaceutical companies and most medical institutions exist for no other reason than to maximize the greatest possible profit, what difference does it make if millions of cancer patients experience long term deterioration of their mental acuity following chemotherapy?

In John Steinbeck’s The Pearl, the pearl buyers collectively conspire to tell Kino that the unusual pearl he has found is worthless, while simultaneously sending agents to try and steal it. In a similar fashion, the eerie manner in which so many doctors and nurses at Memorial insist on belittling the dangers that certain types of chemotherapy can pose to the human brain, suggests that they may know more than they are letting on.

There are two explanations for the behavior of the many oncologists and nurses at Memorial, who belittle and deny the existence of chemo brain. Either they have not read anything whatsoever on the subject, and refuse to listen to the complaints of their patients; or they are well aware of the long-term cognitive damage that can be brought about by certain chemotherapy drugs, yet have deliberately chosen to conceal this information from their patients. Either way, they have imprisoned us all in a conspiracy of silence.

David Penner’s articles on politics and health care have appeared in Dissident Voice, CounterPunch, Global Research, The Saker blog, OffGuardian and KevinMD; while his poetry can be found at Dissident Voice, Mad in America, and Also a photographer, he is the author of three books of portraiture: Faces of The New Economy, Faces of Manhattan Island, and Manhattan Pairs. He can be reached at Read other articles by David.