Living With Chemobrain

I remember when my mom, who had breast cancer more than a decade ago, described her experience with chemobrain. I hate to admit it, but I was less than sympathetic. I minimized it to myself—I hope I didn’t say this stuff to her—by thinking that her life was worth more than a little fogginess, that the drugs that would help her put cancer behind her were just doing their jobs.

Ugh.

If you have experienced chemobrain, there’s a good chance you’ve encountered someone like my old self. I’m embarrassed now, just thinking about it. Even if the sentiments were true—I do believe that the drugs saved her life and that temporary chemobrain was a reasonable price—my choice of words and lack of understanding were less reasonable.

If you believe that you get what you give, it should come as no surprise that I’m now two-and-a-half years into living with a constant low-level, chronic chemobrain.

My brain just doesn’t allow me to function the way I used to. I’m as smart, sure, but functionally I’m a different person. While past jobs required massive amounts of precise and continuous multi-tasking, I know I could not do that now. My life may not move in a single straight line, but my brain desperately wants it to.

If I had any doubt, my family makes it clear to me when I take the time to listen. “There are jobs you could still do,” says one person when I comment that I can’t see myself being able to work at a past occupation. “If there’s a reason for you not remembering, I could understand. But I think you’re just being lazy,” says an unsympathetic child in a moment of frustration. “Didn’t you hear me when I said that?!” asks another.

I do get where they’re all coming from—after all, I’m the one living it. I know my brain is working differently. Two-and-a-half years of cancer treatment, normal aging, and the stress of living with metastatic breast cancer has had an effect on me in multiple ways, including the way my mind functions.

I have many of the classic symptoms of chemobrain: short-term memory loss, disorganization, difficulty concentrating, difficulty multi-tasking, mental and physical fatigue, slowed processing speed, shortened attention span, and trouble finding words. Whew! That’s a long list. I don’t experience all of these all of the time, but I’ve faced them all at one time or another. These symptoms are compounded by depression, anxiety, and pain medications—it’s not just the chemotherapy. It’s estimated that up to 75 percent of cancer patients with solid tumors experience chemobrain during treatment; while the majority of those who finish treatment can recover over time, 30 percent continue to have symptoms. I suppose it is no surprise that my continuous treatment has resulted in continuous chemobrain.

I’ve naturally gravitated toward many of the most-recommended ways to help myself with the new brain I’ve got.

Unfortunately, those steps help but—like treatments for metastatic breast cancer—they do not cure. I don’t call it my “new normal” since I am striving to challenge my brain to work as it once did, but I can help it let me live with less mental stress by doing these things every day:

To-Do Lists: I live by these. I write them out all day long. I am specific because one-word entries just don’t cut it. I keep the list(s) where I can find it and put it in my bag when I leave the house.

Routine: Chemobrain makes routines especially important. They can have alterations, but throwing something unexpected at me causes immediate anxiety. I need a little mental time to incorporate changes. Routines also extend to taking medicine. I have one pill I must take twice a day and that has required more thought to remember than I would have believed. Routine is key for this, as is having some sort of symbol that I actually did remember to take the medicine. I happen to turn the pill bottle upside down after I take it in the morning but a pill box would work just as well.

Organization: Similar to routines, having a spot where I put the essentials (my keys, my bag, etc.) has been extremely helpful since forgetting where I put stuff, including my car, is a pretty constant fact of my life.

Exercise: It’s no secret that exercise does things to your brain by helping with depression and anxiety, both possible causes of chemobrain. It has the added benefit of helping with the ability to tolerate treatments, both mentally and physically.

Talking: Letting my doctor know what’s up is never easy for me — I blame that Scandinavian Midwestern blood — but it is crucial to tell her and to tell my family. Brain issues are nothing to keep to yourself, so speak up.

I wish this ended with a secret miracle cure, but I haven’t found that yet. Until then, I’ll keep up with the steps above and listen to what my family says so I can address symptoms I haven’t noticed. I’m sure they’ll be willing to help. Sigh.