It’s on the tip of my tongue. “I could remove and reinstall the … uh …” pointing at the spot where the wall and the floor meet, moving my hand side-to-side indicating the length of the wall. “The uh …,” pointing again. “Baseboard! I could remove and reinstall the baseboard to save money when the new carpet is installed.”
This is a rough transcript of a real conversation I had this summer when we were planning to redecorate a room in our house. It is an example of a phenomenon that’s become all too common for me since I started treatment for multiple myeloma. Word searching happens with such regularity at this point, I expect it. While it is possible the lapses in my vocabulary are the natural result of my age, I think it is more likely that they are a side effect of my treatments for multiple myeloma and even the diagnosis itself.
Cancer-related cognitive impairments, sometimes called “chemo brain,” are real. While the effects of the condition are often subjective, therefore making them difficult to study, concentrated reviews of patient experiences confirm these impairments exist in cancer patients. A study reported in The Myeloma Beacon in 2013 suggests that about half of myeloma patients can suffer cognitive impairment as a result of treatment. The good news is that the limited number of available studies also suggest cognitive impairments can improve over time when treatments are reduced. The bad news for so many of us myeloma patients is that today treatments may continue indefinitely. While I have no proof, I suspect my issues will continue as long as I am receiving treatment.
These studies also indicate that most cognitive impairments seem to manifest later during treatment as patients begin to “survive” their disease and reenter their prior lives. This was true for me. When I had finished the most intensive treatments and started to get back to a regular life as a myeloma “survivor” (back to work and engaging again in home life), I noticed my brain hadn’t come back with me.
A number of Beacon columnists have shared their own stories of suffering chemo brain and what they do to overcome or live with it. While there are many similarities to all the stories, it is clear that chemo brain affects all of us a little differently, and perhaps some patients not at all.
For me, I’ve noticed two changes I believe are cognitive impairments brought on by my myeloma diagnosis and treatment. Those impairments manifest most often in my occasional “word searching” and less often in loss of recall.
Word searching is not like lacking a sufficient vocabulary to complete a sentence. I know that I know the word, I may have even known the word in the millisecond before I started the sentence. Word searching is losing the word the instant you need it to complete your thought. It is a frustrating feeling, particularly because I’m so aware that it is happening.
I haven’t kept close track, but it seems word searching happens more often, or more noticeably, on my triple dose treatment days when I receive Kyprolis (carfilzomib), Pomalyst (pomalidomide), dexamethasone (Decadron). I don’t think it is tied to any one drug, but more to the way my body, and my brain, are reacting. I’m also significantly more fatigued on these days, so that could be part of it as well. I also know that the word that escapes me is nearly always the subject of the sentence. Again, I don’t know if there is any significance to this, it is just a pattern I’ve noticed.
It is a bit tougher to describe what I’ve called a loss of recall. It’s possible my spouse, family, and those I work with think I’m ignoring them at times, or that I just wasn’t listening, but that isn’t true. It’s just that I sometimes forget the details of conversations I was part of just a day or week before. It’s harder to describe, but equally frustrating, and more likely to get me into trouble than my word searching.
There are times when I realize that I’ve had a conversation with someone about a particular subject, but that I don’t presently recall the details of the conversation we had. For instance, I’ve said to my spouse, “I know we discussed when we are supposed to be at x’s house, but I don’t remember what you said.” Similarly, “I think you might have told me before that I need to put something in the mail, but I just don’t remember if we’ve talked about it or what we decided.”
Unfortunately, these examples sound like an inattentive spouse with better things to do than listen. I can see how that might look, but from my perspective, it is more frustrating. At the moment of recall, I can actually picture, or at least vaguely remember, the context of the prior conversation. I know I was engaged in the conversation. I simply can’t recall the details of what was said.
I’ve read less in the literature about this type of impairment or its cause. Maybe it is wishful thinking on my part that I can escape the wrath of my loved ones by blaming my cancer. I can honestly say, however, that I’ve noticed this problem much more frequently since my diagnosis and treatment. Perhaps it is not drug induced and just that my mind is sometimes more distracted.
Because we notice these cognitive changes more, and they may arise when we are trying to perform work or engage with family, we may become more self-conscience of the impairments and that itself can increase the stress and increase the severity of the impairment. We would be better off to realize this is part of what is happening to us and be prepared for it and not overreact (thus not giving more power to the impairment).
In any case, these issues do impact my life on a nearly daily basis and I want to learn to deal with them better.
Some experts suggest greater exercise helps improve fatigue, mood, quality of life, and therefore diminishes the incidence of chemo brain. This is yet another incentive for me to stick to my New Years’ resolution of exercising more.
There are clinics that offer cognitive rehabilitation. I think these programs include exercises and games to enhance and overcome some of the challenges. I haven’t looked into this, but I’ll make it a goal this year and report back.
For me, the key is knowing that cognitive impairment is happening and telling my family and my caregivers about it. Getting their input on when and what they are seeing, and how I could improve it, is crucial to me. If they know I’m working on this, they can also tell if the efforts I’m taking are showing results.
I don’t think it is useful to keep it hidden, thinking it might just be me. It is common, it is predictable, and in many respects, it can be addressed.
As survivors, we must understand some of the odd facts of our new existence and learn to adapt. While I won’t say that we need to “embrace them,” we at least need to own them as part of who we are as myeloma survivors.
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Photo Credit: (c) 2016 Mark Pouley
We experienced our first (and only) winter storm in Western Washington this month, including a rare blanket of snow. I warmed up by looking at summer lake landscapes.