Patients with cancer-related cognitive impairment (CRCI) may never tell you about their trouble with losing things. Compared to recurrent cancer and chronic pain, misplaced keys and lost checkbooks are no big deal. As for those patients who do mention it, what can you say?
A helpful response depends on understanding not only the symptoms of CRCI and differential diagnosis, but also the darker side of constantly losing things. Here's a glimpse of my struggles and the insights that help me cope. I share them with the hope that they help you find healing words for your patients.
Before my cancer diagnosis, sunup-to-sundown multitasking defined my life as a young internist and mother of three. After various courses of cancer therapies, balancing life became almost impossible due to cognitive impairment: difficulties with attention, word and memory retrieval, working with numbers, topographical agnosia, information-processing speed, and impaired short-term memory.
Just as a sore bruise on my funny bone made me aware how often I lean on my elbow, my CRCI exposed my dependence on short-term memory to navigate the world and be "me." I burn extra calories walking into rooms and then wondering why I'm there. Sometimes I'm rude during conversations, interrupting with my thought before it slips from my mind. And I misplace and lose things every day.
This is my understanding of why I keep losing things: it's as if my brain no longer sees the whole picture, or it sees it but later can't retrieve it. Like a camera zoomed in on a subject, my brain creates easily retrievable engrams only if I'm focused on what I'm seeing and doing. Consequently, when I try recalling past events, a blank slate replaces images of what I did automatically, as well as the sights and sounds I experienced peripherally.
If it's important for me to recall some event or action, concerted effort and time may produce useful images. Or, if I'm presented with evidence (i.e., someone remembers seeing what I did with the misplaced object, or the item turns up), a memory of it might emerge. Too often, it remains amorphous.
I accept my CRCI as a cost of my survival. Had I known upfront I'd develop this aftereffect, I'd have proceeded with the same treatments. Still, painful thoughts and feelings arise when surprised by a loss, for reasons I'll illustrate with a story.
Ding Dong. Before opening the door for a photographer a few months ago, I quickly went to my jewelry box to grab my signature "Hope" necklace to wear for a magazine photo shoot. Surprise! The handcrafted piece wasn't where I usually keep it. "No big deal; I'll find it tonight," I reassured myself while grabbing another necklace.
Well, I didn't find my "Hope" piece in my jewelry box. Nor did I find it after calling the hotels I'd visited since the last Facebook proof of wearing it, searching on my hands and knees with a flashlight in my bathroom and around my dresser, or going piece by piece through every necklace and bracelet I own, twice.
To help me move on, I concluded it was gone and recited my trope "It's just a thing." Yet, thereafter, my morning accessorizing routine included briefly searching through my necklaces and bracelets for my silver "Hope."
That irrational searching was fueled by more than missing my one-of-a-kind necklace. I wanted to live in a world that made sense. Where books and wrapped gifts didn't just disappear. You see, a reliable physical world helped life feel normal after cancer. Each time I lost something, the physical world seemed uncertain, which exacerbated the rumbling anxiety of knowing (the way survivors know) that life is uncertain. I yearned for an end to the little losses that kept reminding me of the inevitable great loss.
Wow, that sounds awfully melodramatic. After all, everyone loses things now and then. This is different.
Before developing CRCI, I took losses in stride. Now they trigger exaggerated responses because they keep throwing me off balance. It's like when you go downstairs and-aaaahh!-almost fall because you thought you'd reached the landing when you had one more step. My efforts to do things and go places are repeatedly interrupted by the discovery of losses that drop me to my knees, wasting precious time on another search.
These days, I calm the unpleasant thoughts and feelings rather quickly when home alone. If with family when I lose something, it's still distressing. All heads turn toward me, even if I had nothing to do with the item gone missing. I don't blame them: I also assume it's my fault. Even though my family is extraordinarily gracious and understanding, it hurts to watch them searching, too-my loss now our loss.
Here's the good news: patients can do a lot to decrease their risk of losing things. I'll devote my next column to a patient handout filled with insights and tips, some of which might be useful during an office visit, such as...
* Your "losing things" is real, and it's different than normal "losing things" experienced by healthy, busy people.
* This is not your fault; it's a cost of your survival.
CRCI is an invisible wound that can make life difficult. Patients who mention that they are "losing things" open up opportunities to improve their care. After validating patients' distress, you can determine whether there's a need to evaluate for other causes of cognitive impairment. Maybe you can adjust their medications. And you can guide them to resources that help them accept and adjust in healthy ways. In doing so, your expert, compassionate response helps patients live their best life.
Months ago, I stopped looking for my "Hope" necklace. That letting go saved time and brought me peace. I also found peace by embracing the mystery of where the necklace ended up, using the loss as a reminder to embrace-not fight or fear-the mystery of life. I moved on. Unexpectedly, while getting dressed last week I lifted an old bottle of lotion and couldn't believe my eyes: a silvery glint of "Hope" on a chain.