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Can I Learn to Accept My Chemo-Induced Memory Loss?

I am a woman who forgets a lot.

Every day I misplace keys, call one of my children by the wrong name (I’ve been known to throw in a dog’s name if I’m honest), and I lose track of what I’m talking about mid-sentence.

It would be easy to blame any number of reasons for my absent-mindedness: three kids who keep me running in multiple directions, the day-to-day financial and emotional responsibilities of a household of five, my own, natural tendency to lean toward ADHD, along with work, friends, and exercise. For years, I somehow kept all those balls in the air, even adding new ones without a shrug. One or two might slip, but for the most part I was an artist at keeping who, what, where’s, and when’s moving seamlessly, without the use of a notepad or smartphone reminders.

All of that changed when the one thing I hate to remember made me forget just about everything else: cancer.

A little over five years ago I was treated for breast cancer. I wasn’t unique, in either my diagnosis or my treatment, but at 39, I was young.

I did intense, lose-your-hair chemotherapy for four and a half months. My head felt like a wet sponge, too thick and soggy for my neck to lift from the pillow. Every sense was on overload. My eyes hurt every time I shifted my gaze. It was like the worst hangover of my life with none of the fun the night before to earn it. There were respites in between rounds, but everything moved slower, mind and body.

I got through the toughest chemo, and then rolled right into radiation, surgery, plus one drug that continued for the rest of the year, but I began to feel better. I noticed, though, that as I physically recovered, mentally, I still felt several steps behind.

Words I would normally have no problem using had a hard time finding their way to my mouth. Simple tasks were tough to remember. I’d get to the top of the stairs and forget why I’d climbed them.

I assumed it would go away. It didn’t. Then I hoped it would go away. It didn’t. Then I prayed it would go away. It didn’t.

“It’s chemo brain,” my doctor explained when I finally asked why I was having such trouble remembering, “it should get better.”

It didn’t. In fact, it got worse. And it’s stayed that way.

Simple tasks were tough to remember. I’d get to the top of the stairs and forget why I’d climbed them.

But it would be unfair of my to only blame the lingering effects of chemotherapy. It could easily be the immediate, full-blown menopause I was shoved into because of my genetic mutation. Or maybe it’s the medication I have to take to block any and all estrogen from my system since my cancer is hormone fueled. Perhaps it’s the drug that helps prevents migraines I now get as a result from everything else I just listed. Pick a culprit. Any culprit. Essentially, though, my brain is a bowl of mush.

Whatever the reason, this shift in my cognitive ability is beyond embarrassing; it’s demoralizing. I was always quick, sharp, on top of my shit; now I’m buried under a pile of it, digging my way out with a teaspoon.

I walk around feeling permanently fogged. It’s like trying to drive through rain without windshield wipers: I can do it, but I have to go slow and focus really, really hard. And if I take my eyes off the road, even for a second, I’m probably going to end up in a ditch.

Fingers that flew over a keyboard now often pause, waiting for sometimes the most basic of phrases to come. Names, once easily attached to faces from my past and present, now nearly impossible to pull from an empty cloud just above my gaze. Trying, trying, trying to remember but failing, then trapped in an embarrassing social panic over my lack of memory for such essential details. I’m a walking Etch A Sketch. One quick shake of the head and it’s a clean slate.

I’ve left my phone in practically every establishment I frequent. My faith in humanity comes from the fact that my purse, replete with a wallet overflowing in cash and credit cards, has made it safely back to me countless times after I’ve absentmindedly left it at countless counters, coffee shops, and restaurants. I’ve retraced my steps so many times I could probably make my own app.

But all of that only affects me. It’s when my memory dings my children that I hurt the most. I have forgotten birthday parties, sports events, and doctor’s appointments. I’ve neglected to give allowances, and the Tooth Fairy has been hung up in Cleveland at least a dozen times. I’ve relied on Amazon overnight shipping for gifts, turned in permission slips late, and begged for forgiveness from teachers. All because my brain can’t function the way it once did. It’s not their fault, yet my kids pay the price.

[pullquote]I made my apologies along with my introductions. “Hi Hannah, I’m Betsy. It’s great to meet you, but forgive me, I’ll probably need to ask for your name again.”[/pullquote]

At least maybe my children will get to see organizational skills integrating technology since my phone bings and bongs throughout the day with reminders. I have to type them in immediately after making appointments or I’ll forget. Without them I’d be lost. I keep paper lists going everywhere, and the “notes” feature on my phone gets heavy use, too.

My husband and kids all know of my deficiencies and have done their best to accommodate. I’m less likely to lose track of things if they send me to-dos via text, so that’s become our primary vehicle of communication for those types of messages. They’re all incredibly forgiving when I forget, which is still often, as we continue trying to find tools that help.

Doctors haven’t offered me much hope or guidance. All of the medicines I take are necessary and there’s no coming back from menopause. So in essence I’m stuck with this new brain, and I have to deal with it. But that doesn’t mean I don’t miss my old one.

I miss the days of easy recall. When I could go to the store with a list in my head, instead of my hand, and walk out with everything I intended to buy. When I didn’t feel the constant panic of wondering what I forgot to do that day.

I miss the life of certainty that I wouldn’t be letting someone down that day. I miss the power that comes with juggling everything smoothly. I miss my old self. I miss my old mind.

It would probably be easier if I could forget what life was like before my brain took the cancer hit. But that life seems to be the one thing I can remember.

I suppose it’s not all bad. Before cancer I led an incredibly full, but stressful life, mainly of my own creation. It was like my suitcase: I could pack it to the rim because I knew how to make it fit. But in the same way it put immense pressure on the seams, and mine were always just shy of popping.

My time was in constant demand, people often relied on me to get things accomplished, and the stress I placed on myself was intense. After cancer I could no longer handle all of it; I had to take a step back. I couldn’t sweat the small stuff because I couldn’t remember the small stuff to sweat. Or at least not for long.

Socially I was forced to relax, too. Instead of the demands I placed on myself to know every name at every party, I gave myself passes. I used to employ tricks to remember names, but after cancer it was pointless. Instead I made my apologies along with my introductions. “Hi Hannah, I’m Betsy. It’s great to meet you, but forgive me, I’ll probably need to ask for your name again.”

The first few times I was mortified. Mainly because I felt compelled to reveal why I was so bad at remembering. But to my relief, most often people were generous. I heard “Me, too,” a lot. And once I realized I could disclose as much or as little as I wanted about why my memory sucked it was downright liberating. In fact, with that out of the way I focused more on the conversation and less on how I would memorize the person’s name opposite me.

It’s a lesson I’d prefer not to have learned, but all of this memory loss has taught me a lot about self-forgiveness — a message I hope won’t be lost on my kids. Maybe I’ll call it humility 101. I need to remember that one. I better go get my phone…

(Photo: Wikipedia)

Filed under: Health

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Betsy Hnath

Betsy Hnath is a writer from the Washington, D.C. area whose work has appeared in The New York Times, Huffington Post, and The Manifest-Station. Recently her work has focused on her experiences as a cancer caregiver to her husband with stage IV metastatic melanoma, and as a patient herself with stage II breast cancer (all before age 40), while mothering her three children. She will never gripe about sunscreen or underwires again. You can follow her on Twitter at @betsandpieces.

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