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If You Build It

November 14, 2010

There is thing they call chemo brain. It certainly beats the alternative, and I don’t usually bitch about it (much) but it’s real, and sometimes it’s frustrating.

It happens when I see a friend whose name I can’t remember, so I cover for myself by sticking a smile on my face and saying, “Hello, friend.” It’s better than calling someone  by the wrong name, as I did my friend Nicole, for a year.

It happens when my husband goes into church without me and I can’t recognize the back of his head and have to get someone else to point him out for me. “We’ve been together for almost 16 years,” he said this morning. “You should know what I look like by now.”

It’s what makes me take 5x the time it should to do simple tasks, like laundry, or making sandwiches. Once I re-learn every step in a process, I’m okay, but the learning curve is vertical, and the scope of stuff I  have to re-learn is vast.

Erica, our awesome housemate, calls it the whiteboard. It was there, in my head, but now it’s gone, only you can see a faint shadow. Another way I describe it is by saying that cancer played 52 pickup with everything I know. The cards are all still there, but scattered all over the metaphorical floor of my psyche.

For example: I had to re-figure-out how to brush my teeth, to figure out to find the toothpaste and toothbrush on the counter with nothing else on it (took 20 minutes), to unscrew the cap of the toothpaste tube, put the toothpaste on the brush, close the cap, turn the water on, wet the toothbrush, turn the water off, brush ALL of my teeth, rinse my mouth, rinse the toothbrush, and put it back. Now multiply that by everything you do in the course of a day. Walking, Driving, Cooking. Bathing. Conversation. Reading. Making love.

A life’s worth of minutiae I had to learn to do over again, from scratch. I’ve had people ask about what was the hardest part of my illness and then express disbelief or derision at my struggles to figure all this stuff out, or judge me for my failures and then strike me from the friend list. At the time, I reacted in silence, still in the thick of it, too shell-shocked, to numb to say what I should have said, so I will say it now. Fuck you.

I spent a lot of time being evaluated, tested, because I knew something was wrong. “My internal process flow charts — they’re gone. I can only do sequential steps. If I have to make a decision, it’s paralyzing,” I said over and over to the battery of doctors I met with to figure out how to fix this.

“You do realize that being able to articulate your problems like that means you are more capable than 99.9 percent of my patients. In fact, I don’t think I’ve ever heard anyone use those terms to describe this problem,” said one neurologist.

Eventually, they sent me to a cognitive therapist who gave me some mental exercises to do along with a photocopied sheet of coping mechanisms (put your purse in the same place every day, carry a calendar, etc.) and pointed out things I should be aware of so I could work on them, and, so far, it has mostly worked, and now I am much too busy with my regularly scheduled life to take time out for cognitive therapy.

Except that I still find myself stymied. I’ll have a mountain of small jobs to do and I stand around. All the time. It drives Chris nuts.

I think I’m on to something, though.

My son’s sixth birthday party was yesterday. It was, predictably, a loot fest, particularly in the Lego department.

He woke up this morning at 6:19 am and began carrying a large box of Lego Harry Potter — The Burrow around, singing. Even before I had a cup of tea, I began helping him build it.

“I can’t do it without your help. It’s too big,” he said.

“You can,” I told him. “You do it one step at a time. See. here are the instructions, one step at a time.” And so we began.

One step at a time.

Not a huge project.

Just one step.

Maybe if I look at my life, especially the housework part of it, that way my house will become less like a huge pile of Legos on the table and more like the Burrow, which reminds me to take down our Halloween decorations because there is still a ghoul in our attic window.

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  1. Gaye walker permalink

    Well said. You have a gift, and I admire you for it. Eventhough our experiences have been different I see a little bit of me in your posts!

  2. April Ford permalink

    You make me laugh. Well said…life is like a pile of legos!

  3. Aunt Lee permalink

    You never get it all entirely back and find yourself years afterwards still rehearsing how to, say, pick up the living room before you start in. Some days the rehearsal is as far as you can get.

    Be kind to yourself, Ducks. And tell Chris to read your posting.

    If this is as annoying as you get, I’d say you’re way ahead of the field.

  4. Jenny Genoway permalink

    My daughter (Sarah Knabe) forwarded a copy of your posting to me. Thank you for so eloquently describing the problems I’ve been experiencing. My last chemo treatment was July 31, 2009. My surgery to remove two lumps from my left breast and the lymph nodes from under my arm was September 6 of the same year. The last radiation I had was December 23. I get so angry when I don’t remember things. The worst part, my husband does, too. Any advice would be appreciated,

    • Thank you for your comment, and thank you for sharing your story. I’m so glad to hear that you made it through — and it DOES get better. When I was less than a year out of treatment, other cancer survivors told me over and over that it would get better, and I found that they were right! 🙂

      I’m hesitant to offer advice because everyone’s experience is so different, but we, too, had our bouts with anger. I think in our case it helped to articulate that we were mad at the disease, at the loss of our prior lives, not mad at each other, nor ourselves. There were many days when it was hard to keep that in perspective, and I still find that I’m angry about it. I probably always will be, but now that I’ve had some time to recover, other, happier, feelings crowd out the anger — most of the time.

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