Learning to be Forgetful

The treatments for multiple myeloma have resulted in memory loss and other cognitive issues, or “chemo brain”. Part of living with myeloma is dealing with this impairment.

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.

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