A Northwest Lens On Myeloma: Learning To Be Forgetful
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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Mark's Photo For The Month
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.
Click on image to view a larger version of it.
Photo copyright © 2014 Mark Pouley.
Mark Pouley is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
This is spot on, and its reassuring that I'm not going crazy, or getting early-onset Alzheimer's.
Word finding is a major issue for me; it wasn't a problem during my initial multiple myeloma treatment, but now I'm in that survivor mode, and it has become a source of frustration and embarrassment. I've admitted it to family and close friends, and they're understanding, but in the workplace it is very challenging. Recall of conversations that just took place is similarly problematic, as well. For someone who relies on language and listening skills at work (yes, listening is a skill), words and conversations falling out of my brain mid sentence is very noticeable.
Thank you so very much for sharing the experiences you're facing. It truly helps me on the journey, as I'm sure it does so very many others.
Mary
I too have had short-term memory impairment that causes "word searching".
I do believe like you that it is worse on the day following the combo treatment. With me it is RVD. I have also noticed an increase in gastro-intestinal issues during the same period. I tend to point to the dex as the root cause, probably only because it causes the most noticeable side effects. I do also note that both the short-term memory loss and gastro-intestinal issues fade after about 60 hours following the 3-drug dosage.
Thank you, Mark. I am the caregiver for my husband, Franz, who has been dealing with multiple myeloma for over 5 years. Your message was so appropriate for us at this time, as I have recently noticed his lack of the proper “word/s" for something, and I am finding myself filling in his words! This make so much sense for me - because, otherwise, his brain is super sharp! Thank you for contributing, I really appreciate it! This is such an important process for all of us!
Great article. I can so relate. Nice to put a name to it and know I'm not the only one.
Mhy (My) bg (big) issue is goiong (going) into a room to do something and not remembering why I went there. That and my usually okay two-finger typingis (typing is) getting worse. As you see with this sentice (sentence) that I didn't correst (correct). The right words are in parentheses.
So I write myself lots of notes, and use a day book, but I often forget to look at either of them! The new new normal ...
From one chemo brain to another, thanks!
I think there is an emotional aspect to be considered too. Even if we don’t think about our disease consciously, it is always in the back of our mind, and it interferes with our cognitive processes. My daughter once said, “Since your diagnosis, you are always distracted, mum”. My husband, who is a child psychologist, told me that children that have emotional problems also have problems with learning. We can think positive, we can be optimistic, but we know that we are in danger, and keeping fear and anxiety at bay takes its toll, and takes away some of the concentration needed to remember words, for instance.
The struggle IS real. And as we get older, there's that to factor in as well. It can be discouraging, but at least we're not alone in this. I don't know if this little technique can help with chemo brain, but it helps with the aging brain: at the end of the day, go through your day backwards. It's supposed to help "exercise" your brain.
Great article and, as always, stunning photography.
What an extraordinarily beautiful photo! Your column really resonated with us. While my husband jokes about his “chemo brain,” I know it really bothers and frustrates him when he cannot remember a word, something he was going to do, or a neighbor’s name. I have suggested some brain games for him, but he is not into games. However, he loves to read, so we try to find challenging books or articles for him to read. Like you, he tries to exercise as much as possible, too. For us it has now become part of our new normal. Since we have been together more than 38 years, I am able to help him when he gets stuck, but I am not with him 100% of the time. One thing he does that seems to help is he writes things down in his calendar and makes lists when he is going to the store. As you suggested, we are ownng this problem.
Mark, thank you for sharing your experiences with chemo brain. You have exactly described my circumstance. I am careful to begin sentences because I know I might get partway through and forget the most important word(s). I've asked my husband to never begin a sentence with "Do you remember ..." But I especially appreciated your description of the content falling away from a conversation you had. My daughter, who is in college, often calls me late at night. The next day, my husband will ask me what we talked about, and sometimes I just can't recall any of it. It's alarming because I really want to be there for her. Your article has given me courage to talk more openly about this. Thank you for the beautiful photos as well.
Mark,
After my stem cell transplant in 2014, I had problems with focus and being able to read and concentrate on such things as newspaper articles and novels. This problem eventually went away, but it was a difficult time for me as this was something new for me, always an avid reader. One coping strategy which I did was to listen to music, especially classical music, which relaxed me and helped me deal with the situation.
Your final paragraph is an excellent reminder that as survivors, we are trying to understand what is happening for us and adapting to the situations we face.
Thank you so much for the article you wrote.
Sylvia
Thank you for all the great comments and support. I think the subject is very personal for each of us, but it is a common enough problem that we can gain from each other's support. Annamaria – I definitely think there an emotional element, or anxiety, or depression, that leads to some of the issues for me. I'm also guilty of being more "distracted" these days. As many of you said, and I wrote, I think the best we can do is try to understand and work around chemo brain as a "disability" of sorts.
Right on, Mark! My frustration: Is it the myleoma, is it Alzheimer's, or is it just plain old age? I am 69 and enjoying all these surprise ailments in my retirement.
Thank you, Mark! I've been experiencing short-term memory loss and occasional periods when my brain simply takes a quick trip to limbo for 10-30 seconds. Because of my family history, I feared these symptoms were the beginnings of Parkinson's or Alzheimer's. I'm getting monthly Darzalex infusions and have received conflicting information on its relation to these problems. It is reassuring to read your experiences. Between cognitive issues, daily exhaustion, and other issues, I was forced to take disability at 59 years old. Now I'm struggling to find meaning for the remainder of my life. It helps to know that the cognitive issues, at least, are probably not a portend of something more ominous.
Thank you.
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