On the list of the big, scary, things a cancer patient deals with, Chemo Brain is right there toward the top of the list under Will This Kill Me and Kill Me, This Will. It is such a big thing, it is so difficult to get one’s arms around it, there is relatively little research conducted, there is no consensus about what it is, what causes it, what it symptoms are, how to treat it, how many cancer patients have it or even what to call it.

Your brain on chemo.

Your brain on chemo.

Formally referred to as Post-Chemotherapy Cognitive Impairment or Chemotherapy-Induced Cognitive Dysfunction, Chemo Brain is the term given to the enormous grab bag of cognitive, emotional, and psychological consequences of cancer and it’s treatment. In the tiny bit of research that has been done, there is a small bit of evidence Chemo Brain, in some patients, may not even be caused by chemotherapy. But how would we know for sure because NO RESEARCH.

There is a general acceptance chemotherapy treatments play a large role in Chemo Brain but it may not be the only cause. The cancer could affect cognition. Anesthesia associated with surgery can amplify and lengthen it. It may be due to the brain shrinking in size. It could also be issues in the hippocampus, a specific region of the brain that deals with memory. Or, it could be stress and depression associated with getting a cancer diagnosis and going through cancer treatment. Or it could be all of these things. We don’t know. Because NO RESEARCH.

What we know is this, there are side effects to cancer treatment and the central nervous system, including the brain, absorbs a lot of the punishment. The list of Chemo Brain symptoms reads like a the fifteen second disclaimer at the end of an erectile dysfunction ad. It includes everything in the general area ‘Things Are Different Now’ and in most medical reference material looks like this, from The Mayo Clinic’s website:

  • Being unusually disorganized
  • Confusion
  • Difficulty concentrating
  • Difficulty finding the right word
  • Difficulty learning new skills
  • Difficulty multitasking
  • Fatigue
  • Feeling of mental fogginess
  • Short attention span
  • Short-term memory problems
  • Taking longer than usual to complete routine tasks
  • Trouble with verbal memory, such as remembering a conversation
  • Trouble with visual memory, such as recalling an image or list of words

Chemo Brain can last for months or it can last years. It can be a minor down tick in one’s attention span or it can impair one to the point of disability, rendering a patient unable to return to work. Insomnia seems to worsen it. It seems to occur more in breast cancer patients and other female-centric cancers, like ovarian and cervical. It seems to be more prevalent in pre-menopausal women. It may have some connection with issues relating to estrogen but, again,  NO RESEARCH.

There is no gold standard treatment for Chemo Brain. There isn’t a silver or bronze. There is NO TREATMENT for Chemo Brain. REPEAT THERE IS NO ACCEPTED TREATMENT FOR CHEMO BRAIN. There are attempts to medicate around the edges of symptoms. There are mild suggestions. “Maybe you should do crossword puzzles.” “Try some of those brain games on your phone.” “Get more sleep.”  And the classic, “try reducing your stress level”. Oh, okay.

As little understanding of the syndrome exists within oncology, there is no understanding in the wider world. Discussing it with people around you can be difficult. How do you explain ‘the inside of my head is different’ to another person when they do not occupy the inside of your head already? Things happening to one’s brain are scary and reactions can be less than empathetic.

Executing a perfect Tebow on my last day of treatment.

Executing a perfect Tebow on my last day of treatment.

I have Stage IV breast cancer and I was pre-menopausal when diagnosed. I’ve been put under general anesthesia more times than I care to count. I didn’t sleep for the first year I took tamoxifen. I had big doses of all the classes of chemotherapy drugs which appear to be the most neurotoxic. I am four years out from my last chemotherapy treatment.

I live inside a Chemo Brain-ed brain. It’s my brain but it isn’t. I experience the direct effects, the memory loss, panic, fogginess, verbal memory loss, confusion etc. But with that, I then experience the panic and confusion of losing all of those things. It is a fun house mirror kind of life, each loss, each down tick, reflecting and refracting through the next one.

Before you tell me ‘that’s part of being over 40’, let me stop you, because no. It is not the same thing.

For one, this was the slow, gradual, gentle decline toward soft-focus old age. One month, I was fine. The next month, I was not. Four months later, I was in deep water and I have been treading, trying to keep my head up, ever since.

Secondly, I am really, really, intelligent. Or, I was. I mean, really. My IQ was in the 99.02% percentile. And now, not so much.

Finally, I had executive function to spare. If I made your acquaintance, the next time I saw you, I recalled not only your name but details about your life. Your mother was sick. Did your son get into his preferred college? You don’t like cabbage. I could shepherd multiple, diverse, projects simultaneously. I read between one hundred and one hundred and fifty books a year. My favorite form of entertainment was film, especially classic film. I loved film. I loved books. I was proficient in three foreign languages.

Now, I don’t often go to the movies because it is difficult for me to pay attention. If I watch a film at home, I usually watch it in thirty minute increments. I can do live performances and I enjoy them but it takes a lot out of me. I haven’t read one hundred books total in the past four years. I can’t process lots of things going on simultaneously. I forget what I am saying while I am saying it. I can’t remember words, like ‘available’ or ‘systemic’ while I am typing a sentence. I can’t recall names. I haven’t returned to former group activities out of embarrassment because I can’t recall anyone’s name. Things exhaust me that used to exhilarate me.

It took me eight hours to construct this essay.

I am getting better. I think. I make progress and then I have another surgery or a bout of insomnia and my brain backslides. But each time, the losses are smaller and it takes less time to recover. But the fun house feeling hasn’t left yet.

It isn’t the same.

The cancer patients in your life need your patience, your understanding, and your empathy.

More reading:

Mayo Clinic

M. D. Anderson

Latest abstracts from PubMed, for meatier reading