executive functions | My Eyes Are Up Here

Several years ago, I read John Robison’s autobiography, Look Me in the Eye: My Life with Asperger’s. Asperger’s is an autism spectrum disorder and without going into great detail, one of the main difficulties for individuals with this pattern of brain development is to make positive social connections with others. People with Asperger’s also typically have narrow interests, which can contribute to unusually well developed specific abilities. It is an excellent book and I love his story of transformation. John Robison is a successful businessman. Although he never graduated from high school, in the 70’s, he worked for the heavy metal band, KISS, designing their fire breathing and rocket launching guitars. He also worked designing electronic toys for Milton Bradley.

Robison was not diagnosed with Asperger’s until 16 years ago at age 40. As he got older, he gradually improved his abilities to form meaningful social connections, to make eye contact, to demonstrate empathy and perspective taking, and to have a more integrated flow of emotional, behavioral, and cognitive functioning. He remarried and found lasting love. But there were trade-offs to his transformation. Robison could no longer understand the technical designs he had previously made. Robison’s brain was able to function less narrowly which meant that he could no longer focus such a large proportion of his mental energy on his complex pyrotechnic designs. If memory serves, I believe he was happy with the trade off.

As I have written in the past, I have experienced changes in my cognition since my cancer diagnosis. Although overall, things have improved, I still have concentration difficulties and difficulties integrating information and making simple conclusions. It doesn’t happen all of the time but every so often I find myself thinking, “D’uh!” The most persistent difficulties have been with my writing mechanics. It’s not like I never made errors before because I did. But I make so many more spelling, grammatical, syntax, and punctuation errors than I used to. Sometimes I think of a word and write down something else entirely. That is a new problem. I don’t remember doing that before. It is a language processing problem and I don’t like it at all.

My writing errors have caused me variable amounts of frustration and embarrassment. However, it has not gotten in the way of my posting in my blog, anyway. The objective part of me figures that I am not a professional writer and should not hold myself to that standard. Additionally, I think I have interesting things to write and a number of people seem to like to read my blog. Finally, carefully combing through my writing for errors frankly requires more brain energy than I can spare right now. My job requires intent concentration and I just don’t have much left by the time I write my posts. Any that’s leftover really needs to go to having conversations with my family, which was something that was hard for awhile from a concentration perspective. I still have trouble following the train of thought for my husband and daughter at times. Neither of them consistently use topic sentences in their oral language. My husband often leaves the point of what he is saying until the end of a several minute explanation. In my current mind space, especially after a work day, I feel that my brain may explode. I need clues to organize what he is saying. Is it good news or bad news? Is he telling me about the status of a work project (so hard for me to follow as I am not an engineer) because he just wants to share about what he is doing or because he is going to tell me that he has to work late tonight? I feel frustrated with my brain for not being there for him as much as I’d like to be. I also sometimes get frustrated with his communication style.

I saw the book, Look Me in the Eye on my coffee table yesterday. I’d taken it off of the bookshelf to give it to one of John’s coworkers, who used to design pyrotechnics for Billy Idol. I figured he’d get a kick out of reading it. But he either forgot to bring it with him or didn’t want it because it was still on the coffee table after he left our house. When I looked at the book I remembered John Robison’s trade off and saw a parallel in my own life.

I may never get back my consistent attention to detail or all of those thinking skills on which I used to be able to rely. But I have much less anxiety and a lot more meaning in my life. I have a more interesting life. I have a lot more fun. I’d say that this trade has worked in my favor.

I’ve read a lot about “chemo brain” in breast cancer blogs. A lot of breast cancer patients observe a decline in their attention and memory during and after chemotherapy. They complain to their physicians and many of them feel invalidated by the responses they receive. This is in part, because the evidence of chemo brain is sparse. (Before you throw your shoe at your computer, bear with me.)

I have a Ph.D. in psychology and in addition to my seven years of graduate school during which I conducted research, I worked as a researcher for 10 years after I graduated. One of the things that researchers are trained to do is to test hypotheses and sets of hypotheses. In clinical research, there is also the testing of treatments in the context of clinical trials. We are trained to interpret hypotheses in terms of whether they are empirically supported or not. If they are supported in multiple studies, we accept them as “truths” (there are no absolute truths), especially if findings are replicated by another lab. If they are not supported, we conclude that (1) the hypothesis was incorrect or (2) the hypothesis was tested incorrectly.

However, there is a third reason why a hypothesis has inadequate research support and that is when the hypothesis has not been adequately tested. Now as far as I can see, this is the case for the chemobrain hypothesis. So does the fact that it does not have adequate experimental support mean that it doesn’t exist? No, it means that it could exist but we don’t know because we haven’t thoroughly looked at the question. A downside of our careful and methodical ways is that we take our sweet time assessing potential “truths.” This is also a source of frustration for most of the rest of the world. Further, sometimes as researchers or as clinicians who do evidence-based practice, we lump all of the hypotheses that have not yet been deemed empirically-supported into the same group. For example, when asked, “does treatment x work”, they might answer “no” even for a treatment that has never been tested. The correct answer in this case is “We don’t know.” As a clinician who is supposed to have the answers, it is hard to say this to people. But it’s part of our job. To the great credit of my oncologists, they are both extremely knowledgeable but honest about the limitations of their respective fields. My breast surgeon actually discussed the concern about over treating breast cancer because they do not yet know how to distinguish between tumors that will spread verses those that will not. (In breast cancer, an estimated 25% of tumors never spread. If you want this article, let me know. I have the .pdf and it was given to me by a childhood friend who is a professor at Rutgers and does cancer research on polarity in cancer cells.)

Then there is the confusion provided by some (not all) of the folks in the media who go around spreading rumors and making generalizations based on one small result from a single study. Or who totally misrepresent the findings of a research study. Unfortunately, most of us do not have university library privileges that allow us to check out the primary source material on which the story is based. Also, even if we could, we might not have the necessary background knowledge to interpret the study. As an example, there was a news story that made it rounds in the blogisphere recently. The investigators used used neuropsych measures and found that breast cancer patients who underwent chemo showed declines in executive functions such as memory. The comparison group were “healthy controls.” So a group of women who have been subjected to a variable onslaught of chemo, surgery, radiation, endocrine therapy, not to mention the stress of having a serious illness were compared to women with no known medical problems. The story was presented as evidence of chemo brain. This is not specific evidence of chemo brain because chemotherapy was one of many variables that could explained the findings. Does this make the study useless? No, I think it shows that the cancer assessment and treatment experience is associated with a decline in cognitive functioning. It is a little bite out of a much larger question. Further, the use of neuropsych measures was really smart. They can be more sensitive to subtle real world changes than other measures plus they are safer and probably less expensive (I’m guessing that they did not do a full neuropsych battery, which is kind of expensive) than using an MRI.

Boy, I wish I could remember where I saw that article but I can’t remember where I saw it. That’s because my attention and memory have been impaired since I was diagnosed with breast cancer nearly a year ago! As a psychologist, I validated this for myself as the stress alone of having cancer is enough to impair executive functions. And also as a psychologist, I don’t dismiss the real impact that stress can have on a brain. In simple words, psychological stuff is real. People might say, “It’s all in your head.” Guess what? Your head is part of your body. Also, your brain is in there and it’s kind of an important organ.

Stress impacts cortisol regulation. Cortisol is a hormone that is triggered by stress and it’s purpose is to help us function better during those “fight or flight” times of our life. A problem with this is that too much stress or chronic stress can break down this regulatory system and lead to a break down in attention and memory. Speaking of hormones, there is another hormone that is thought to be important in memory functioning and that hormone is estrogen. Most, but not all breast cancer is estrogen responsive. How many of us have our cancer treated with hormone blockers? So at least some of that fog could be due to reduced estrogen. I am not an endocrinologist and concede that I am oversimplifying the role of these hormones to make my point and also because I don’t understand endocrinology terribly well. But my larger point is that there is evidence that (1) cortisol and estrogen functioning impact attention and memory and (2) cortisol and estrogen functioning is impacted by having and being treated for cancer. And theses are just examples. There are a lot of potential mediated relationships (indirect effects) as well. Interrupted sleep impairs attention and memory, too. How many of you haven’t had difficulty sleeping due to the stress of cancer or due to increased hot flashes, for those of you who receive endocrine therapy?

But what about chemotherapy? All of my chemical warfare has been in the form of anesthesia, pain meds, tamoxifen, and Lupron. I did not receive I.V. chemotherapy. My heart is with all of you who are enduring or have endured this. It’s not unreasonable to hypothesize that chemotherapy drugs might have a direct negative effect on memory and attention. The blood brain barrier does not exactly work like Fort Knox in keeping chemo drugs from entering it. There is some permeability. So at least some of those nasty chemicals might get in and do damage. (I’m not a neuro-pharmacologist or neurobiologist but I believe that my general point is true.) And perhaps some of that damage might be to parts of the brain that impact attention and memory. And I do see some research in my Google Scholar searching that supports these hypotheses. But one job of a researcher is to interpret findings from a single study into the larger context of multiple studies. They also use the level of rigor of the particular journal in which the article is published in their interpretations. I can do this in my own field but this is after many years and having read thousands of research studies.

One question that is buzzing around my head like a gadfly is “Why isn’t this question rigorously tested?” If any or all of the chemotherapy drugs cause cognitive decline, shouldn’t we investigate it so that patients can be informed of the potential treatment side effects? Isn’t it important to know whether the potential effects vary in duration, frequency, or intensity as a function of the drugs chosen for treatment? And in the mean time, let’s hear it for better integration of psychology into cancer research and treatment. I think we can all agree that cancer is stressful. We also know that it increases risk of anxiety and depression. Stress, anxiety, and depression can all negatively impact attention and memory. We have tools for addressing these issues and some of them like mindfulness meditation are incredibly cheap and safe. Finally, we are trained in measurement as well as in research design and clinical trials.