Coping with chemo brain

Last week, Jane Brody of the New York Times explored new scientific findings about chemo brain, the foggy thinking and forgetfulness that afflicts many cancer patients after treatment. Today,  she offered advice for patients in "Taking Steps to Cope With Chemo Brain."

"Nearly every chemotherapy patient experiences short-term problems with memory and concentration. But about 15 percent suffer prolonged effects of what is known medically as chemotherapy-induced cognitive impairment," she wrote last week. "The symptoms are remarkably consistent: a mental fogginess that may include problems with memory, word retrieval, concentration, processing numbers, following instructions, multitasking and setting priorities."

In today's story, her suggestions about coping including making lists and doing one thing at a time instead of multi-tasking as in the past.

Sometimes I experience that fogginess myself. The kids tell me, "You just asked the same question" or "You told us that three times." In general I'm pretty high-functioning, as they say, but I have lapses. Sometimes I just shrug and say, "Chemo brain, sorry." Or, sometimes I say, "I know I've asked you five times in a row. If I hadn't asked you 10 times over the past two weeks or so, maybe I wouldn't repeat myself!"

The question is: Can you attribute these things  to chemo brain, or are they a sign of aging, or just a quirky personality trait, or perhaps the kind  thing  that happen to most people on and off? (Once before cancer, after writing a story about early Alzheimer's, I diagnosed myself with it, but let's not go there.

The kids' list of slightly dopey Momisms predates cancer, leading of course to the question of why they make fun of me, but let's just assume it's because they find me so endearing. One of their favorites came out of my mouth when I was giving one of many lectures about never let a drunk person drive you home, always call me, I will not lecture, etc. etc. It came out, "Never get in a car with anyone who drives!"

The other day, I asked Joe to move a soda can off a wood table, "before the moisture vaporizes."

"Did you mean condense?" he asked. The word had escaped me. "Whatever, you get the idea," I said. (As in, "Give me a break. Just move the bleepin' can!"

Before cancer, I got lost while driving, even sometimes, I'm sorry to admit, when dropping one of them at a friend's house where I had been many times. Today I space out sometimes too. So what else is new?

In any case, if you think you suffer from chemo brain, you might want to check out Brody's suggestions. One of my favorites is making lists. I keep a pad near my bed and write down the names of people to call and things to do.

It's actually something I've done for a while, again, even before cancer. Occasionally I wake up at night, turn on the light and write something down. Sometimes in the morning, I can't understand exactly what I wrote. And of course just because you write something down, doesn't mean you'll do it. But it takes the pressure off your mind from worrying that you're forgetting something. At least you see the list in front of you and the you can go from there.

Transfusions and rashes and shakes, oh my!

Due to my low counts on Monday, I was anxious on my ride into Boston yesterday. Always on the lookout for signs, I was happy to hear a radio station playing the Grateful Dead singing, “I will get by…I will survive.” When that was over, I switched to another station, only to hear a deep male voice threatening, “Your time is running out!” Waaaaaaa. If you’re going to stay open to signs, you need to learn how to filter out the bad (and just plain silly) from the good. I listened to the rest of the message, which was about a last chance to contribute to a PBS fund drive. The man was NOT talking to me. I got a grip. In my head, I switched back to the Grateful Dead: “I will get by, I will get by, I will get by, I will survive.”

I survived the long day at the clinic, but it wasn’t easy. My white count was down to .9 (normal is 3.8-9.2) and my hematocrit was down to 21 (normal is 34.8-43.6). I wondered how I had been able to walk the dog nearly two miles the day before. I guess I was running on reserve power. I needed a platelet transfusion in addition to needing blood; I figured if my platelets were that low, I didn’t really need to know the number, because it would only spook me.

This being the third downward spiral after a combination of CMV and Valcyte, the drug used to treat it, they switched me from the Valcyte to a different drug, Valtrex, which looks like a horse pill and needs to be taken four times a day. They said this drug should hold down the CMV but not mess up my counts.

I managed to avoid a bone marrow biopsy; Melissa relayed Dr. Alyea’s conviction that all this craziness with the counts is a medication issue. (Sigh of relief here.)

On to the infusion room. I was pre-medicated with Tylenol and Benadryl to head off drug reactions, and M.J., my nurse in the infusion room, started the platelets first. Soon afterwards, I started breaking out in hives. M.J. added another 25 mg. of Benadryl. Then I started shaking, my teeth chattering like I was out in the freezing cold instead of being huddled under a blanket inside. They call this rigoring. Melissa came in and put in an order for IV Demerol. I remembered that Demerol had stopped the shaking when I got it in the hospital a few times when I was spiking a fever. Thankfully, the first 25 mg. of Demerol stopped the rigors yesterday.

When Diane came to rescue me (again) I told her about the shakes, which in my mind were more connected to fevers than to platelets. She reminded me that I had rigored after platelets countless times in the hospital.

Somehow I had blocked, or partially blocked, the memories of all those discussions about what could be done to prevent the platelet reaction or to best deal with it when it happened. I wondered about the source of this forgetfulness. Was it (a) chemo brain or encroaching dementia, (b) a matter of low blood flow to my brain (c) the two Benadryls or (d) the capability of the mind to place a haze over some of our worst memories?

Diane drove me to her house, where I fell asleep sitting up a couple of times until I got myself up to bed. While sitting on the edge of the bed, I watched our second cousin, Rabbi Rick Brody, try to win a $1 million Hanukkah prize on the show, “Are You Smarter Than a Fifth Grader?” Our cousin Betsy had e-mailed us a reminder to watch the show, which had been taped over the summer. Ricky, who lives in California, is 34, married and a father. To me he is still one of the younger kids around the holiday table.

I remember catching this silly show when it first came out, and thinking it was never going to make it. Shows you how smart I am.

Yale-educated rabbi (Rick) was followed by a priest (also Ivy League-educated); host Jeff Foxworthy called it “The rabbi vs. the reverend vs. the redneck.” Later, I found the details of Rick’s appearance on a blog, Game Show Kingdom, (who knew?) where, if you’re interested, you can scroll down quite a ways to read the questions and answers from last night's show. 

Rick got stumped on a question from fifth grade history: “In the 1850s, the U.S. bought 30,000 square miles of land as part of the Gadsen Purhcase. The land is now part of two U.S. states. Name them both.”

Rick did not get the right answer, which is Arizona and New Mexico.

Most of us probably wouldn’t know that answer, but, whatever. He still earned $25,000 and the chance to say into the camera, “I am NOT smarter than a fifth grader.”

While thinking about how strange this all was, I keeled over and fell asleep with my head at the bottom of the bed. I eventually straightened myself out, but I slept badly, annoyed by the sense that my skin was breaking out even more than it had during the transfusion. By morning, I had a full-blown, VERY ITCHY, rash.

I ended up returning to the clinic, where I saw Melissa, who conferred with Dr. Alyea. He said it was probably a continuing reaction to the platelets, and he prescribed a short course of steroids along with Atarax (hydroxyzine), which works like Benadryl only better.

Later I spoke on the phone with Tami, who sympathized. “It’s like you’re going two steps forward and not really two steps backwards, but more like two steps sideways,” she said. Well spoken, Tami. I think a lot of people know the feeling.

Sorry this post is so long. It’s been a long two days. I return to the clinic on Monday.