Don't you just love it when science catches up with lived experience?
I probably don't mean to be quite as snarky as that sounds. It does take time to realize that there is something worth study, the necessary first step before a researcher would embark on a research project design, seek funding and then study participants, and of course determine what the research shows. Here is a brief report on what appears to be among the first to document changes in the brain following chemotherapy:
I don't think that chemo brain is a universal consequence for all who have chemotherapy, but it is certainly exceedingly common, from what I've read, heard, and experienced myself.
If someone has other documentation to add re: chemo brain, it would be excellent if you would make note of it in a comment. However, for my purposes in this diary it is fine simply to discuss our own experiences of it, if any, and what work-arounds or remedies we've tried, along with their results.
Now, I will add that making the differential diagnosis between chemo brain and a phenomenon that one of my friends calls "CRS syndrome" (as in, "Can't Remember Shit") is not always easy. Cancer tends to be associated with aging, and so those of us who are getting a little long in the tooth might already be susceptible to little memory glitches.
But chemo brain to me has seemed to be more comprehensive and disruptive than those little lapses. I've thought of it as analogous to the neuropathy I experienced in my feet, post-chemo. Just as my feet and ankles felt as though they were covered in wax, my mind feels somehow coated with something that limits function. Please join me below the little entangled brain waves for more discussion.
I consider my chemo brain responses to have three different but related manifestations. The first is that I frequently will encounter little malfunctions in my ability to recall people and/or events. I've always been very, very good at names & faces, phone numbers, etc. Not so much any more; instead, I get the eight-ball answer, "Try again later" far more often than I'd like. Sometimes the information does surface later, sometimes not. Trying harder definitely does not help. I have to let it go, consciously anyway, and wait to see what my mind will do on its own.
The second is that I have much more difficulty maintaining my concentration; I am much more distractible than I used to be. I've always kept daily to-do lists, and now I need them more than ever. Where it shows up most is in the too-small-to-list sort of task--such as when I decide I need something from another room, get up to get it, and then once I arrive in the place I need to find it, I have forgotten what I wanted in the first place. That one is usually resolved by retracing my steps, literally or mentally. It's still annoying.
The third is that I am no longer able to multi-task. I know, I know that there is plenty of evidence that no one really does that anyway; I'll yield to that body of evidence. Still, I would claim that my ability to shift quickly from one task to another, or even to maintain a solid awareness of multiple projects close to simultaneously has been much diminished. This appears to be a "new normal" sort of thing. I might be able to make my peace with it if I approach it with the idea that it is a better way to stay in the moment. But that is honestly a compromise that I would have preferred not to find necessary.
It is of course also possible that the chemotherapy is unfairly blamed for changes that have more to do with sudden and ongoing stress. There are few diagnoses that are as hard to hear, and anyone coping with a serious, life-threatening condition is IMHO going to find it stressful, or at least a very significant challenge. The past two years have presented one challenge after another--medical, financial, emotional, familial--and while I'm doing all right with it all for the moment, it all takes a toll.
I'd like to open the floor now to everyone else's experience with chemo brain, however you might define it. What have you attributed to the after-effects of chemo? What work-arounds or remedies have you tried, and how well have they worked for you? What changes (improvements, I hope) have you noticed over time?
I look forward to learning from what we share.
PS--I wanted to reprint this exchange (slightly edited) between DarkHawk98 and ZenTrainer from last week's comments:
This is going to be my last Monday of direct interaction with the community for a while. Next Monday (Dec. 10th) I will be spending with my darling wife since Tuesday Dec. 11th is THE big day for me - Surgery day! wooo hoo FINALLY! AMEN.ZT
For this community I want to thank each and everyone of you for the words of love, understanding and encouragement all these many months. As soon as I am able to function AFTER surgery trust me I will send up a flag of hello and share my thoughts such as they will be considering I am gonna be under the influence of "GOOD" pain meds. for a while laughs
The quilt that Sara and her sister is finishing for me will provide me with much soothing comfort especially during these next few weeks of challenge and change. I will draw strength from this quilt and I will continue to grow, evolve and flourish as only a crazy older goat
from the left coast can! laughs
We may need to redefine "direct interaction".DH98
We'll be there with you on the 11th. You can count on it.
I know that everyone will be there with me ZT. all this positive energy coming from every corner of my life has just given me so much strength and determination. I am in awe.Together we are stronger. I'll be thinking of you, DarkHawk98, tonight and tomorrow, and looking forward to good news.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.