Today was a rough day. In a rough week.
I've struggled with fatigue, physically and cognitively, since taking two doses of chemo this summer - one in July, one in August.
Theoretically, I shouldn't have any remaining difficulty.
But I do. And boy, do I.
The Symptoms
1) I make spelling mistakes I never made before. I make the same spelling errors I made before (words with ie or ei always threw me). I amke teh same transposition errors I always made before. And from time to time, my fingers hit the wrpng keys. But now I mis-spell words in ways I never did before - sometimes I put the wrong vowel in - or I leave a letter out completely. And I can't see what's wrong with it, at least not right away.
2) My brain won't let the words out. I've had flashes of aphasia throughout my life. Aphasia (for me anyway) is when you know there's a word, but it won't come to you. You probably know the first letter, or syllable, or your brain picks up another word that sounds similar at first, but the right word, as a whole, refuses to make an appearance. You draw a blank. I'm experiencing something like that now, but quite different. Now, I know the word, but my brain won't let me say it. Like today, I wanted to get a postcard from the museum store. But they moved the store, so I had to ask someone where it was now. I walked up to the ticket taker at the front of the museum and I wanted to ask her where the museum store was, to buy a postcard. I could feel the word "store" rolling around in my brain. But somehow, the word "postcard" kept me from being able to figure out how to actually say "store". I knew I was struggling with saying the words, so when I stood at the counter, I held up my hand in a gesture to indicate I was trying to say something, and ... nothing. So I waited. And waited. And waited for the word "postcard" to stand down so I could finally ask "Where would I find the ... store ... to buy a postcard?"
One interesting thing about the words is that it doesn't seem to affect writing, only speaking. Moments before starting to write this blog piece, I had to fumble around in informal sign language with the guy making my sandwich, because I couldn't speak, at least, not when I needed to. And yet, I think it's arguable that my writing remains lucid.
3) Then there is the thing that bothers me the most - I have trouble moving confidently in the world. I don't have any fear of falling, or a lost sense of balance. It's more like I have to break my motions down and consciously step through the stages. So, again at the museum today, I started walking up a short flight of six stairs. By the time I got to the second stair, I could feel my brain clamping down, so I grabbed the handrail. Hard. And then I had to think through bringing my other foot up from the first stair to meet the pioneering foot on the second stair. Now up to the next stair with one foot. Bring the other foot up to that stair. Stop. Get my bearings. Move my hand up the rail. Repeat. I had to stop and wait at the fourth stair for a few seconds to figure out where I was and how to get where I was going. And once I got to the top of the sixth stair, I moved myself out to the end of the railing, then turned my head first, then my body, towards the next objective, before releasing the rail and starting to walk in that direction.
The Sensations
Of these three, it's the second one - not being able to bring my words into the world - that shocks me. The spelling stuff is a curiosity. These days all my machines try to correct me anyway, and if I mis-spell something in my programming, it doesn't run. But long ago I learned to write code a few lines at a time and test them at every stage, so this doesn't cause any new problems. And as disturbing as the movement impairments are, I can feel it coming on, and I just slow my life down to accommodate.
But when my brain won't let the words out - it often comes as a surprise - and is accompanied by a strong pique of frustration. These days, I often start crying without warning from that »bzzzzt« of frustration. This week, I broke out in tears on Tuesday, Wednesday, Friday, and Saturday - sometimes several times a day. I get frustrated with having my brain seize up. Frustrated with not understanding why my brain works differently now. Frustrated with not knowing what to do to make it better. Frustrated with not knowing my future - is this who I'm going to be for the rest of my life? If so, I can live with it, but it's rough not knowing.
The Science
I'm still pretty new at all this, but I've been eagerly reading about what I may be experiencing and why.
I've had two oncologists tell me that the chemo I had (two doses of carboplatin) couldn't possibly explain my symptoms, and from what I've read so for, I'm inclined to agree. Which is strange. I know that a bunch of new symptoms first appeared when I started the chemo, it was pretty bad while I was taking it, and it got better afterwards. What's even weirder is that, in the past few weeks, they've gotten more prominent, not less. It could be "deconditioning" from the chemo laying me out flat in bed for a month, so that's the practical angle I'm pursuing at the moment.
But here are a few interesting things from the scientific literature: first, a Swedish study did an amazing job to characterize the cognitive impairment that testicular cancer survivors experience. Rather than starting by conducting the standard neuropsych tests, they asked open-ended questions of a few dozen guys who had had testicular cancer and chemo about their experiences. Then, they drew up a list of a few hundred descriptions from what these men told them, and then asked over a thousand testicular cancer survivors (nearly all the survivors in Sweden) to figure out which were the most frequently endorsed, and which were particularly associated with chemo.
They found that items related to language processing were the most specific to chemo, and that for many of these items, it was an occasional thing, not the sort of constant level of impairment you might expect to identify using the standard neuropsych battery. That rang true to my own experience - most of the time I have no trouble at all. And I can't produce these symptoms "on demand".
But what was interesting to me is that there was really no difference between guys who had taken no chemo at all from those who had taken one to four cycles, it was really only the guys who had taken 5 or more cycles that had higher levels of impairment. And they did the right kind of analysis to show a step up from a basically flat nothing-burger to a jump to a qualitatively different experience among the guys who had taken quite a bit of chemo.
Second, a Danish study did another interesting thing. They used the standard neuropsych testing battery (which is not specific to the kind of symptoms that the Swedish study identified). Like many other studies, found essentially no difference between testicular cancer survivors who had taken chemo from those who had just had surgery. But, when they compared their results to what the standard population norms are for men of the same age, and with the same educational background (both of which affect the performance on these tests), they found that testicular cancer survivors were much more likely to be cognitively impaired on just about every test than they "should" be, regardless of chemo or not.
That tells me that there is something about having the cancer itself that causes cognitive changes. I don't have any idea what that is, let alone how long it lasts, or even whether it continually gets worse with age.
Maybe it is something about the cancer itself. But, why the cancer itself would continue to cause problems years after it was cured is a mystery to me.
Maybe it is something about having surgery. But, the surgery for testicular cancer is no more intense or invasive than a hernia repair, and there must be millions of relatively young men who have had a comparably intense surgery - you'd think if there was an epidemic of surgery-induced cognitive impairment, somebody would have noticed it decades ago.
Maybe it is something about the stress of learning one has cancer at a relatively young age, rather than a direct physiologic effect of the cancer itself or the surgery. Maybe. But there are so many sources of stress that are more traumatic. Like being shot. Or imprisoned. I wonder what people have found out about stressful life-altering events and cognitive impairment - and particularly if it manifests in the peculiar ways I identified for myself, or the Swedes identified in their cohort.
So far, I don't feel like I have anything close to an understanding of what this is all about.
The Search ... Continues
I want to re-read these articles, and as many others as I can find, with a few ideas in mind.
First, what do we know about characterizing the phenomenon (like the Swedish study), and can we do a better job of it.
Second, I want to learn more about the trajectory of cognitive impairment in testicular cancer survivors. The studies I've looked at so far are cross-sectional, I've got one in the bin that follows men over time, including starting with assessments after surgery but before chemo - that should be an interesting read. But I also want to know how does this play out over years - decades - after the initial surgery (with or without chemo or radiation).
Third, I want to see whether the specific cognitive impairments experienced by testicular cancer survivors are similar to those reported by people who have survived other forms of cancer - particularly other forms that are infrequently treated with anything more than surgery. That is, is there something unique about the cognitive impairments associated with testicular cancer?