Cancer's Other Battle: Dealing with Side Effects

[Barb73]

http://www.sltrib.com/faith/ci_9429720

ARTICLE:

. . . . . . . . .

First my husband, Elliot, forgot to tell me we'd been invited out for dinner.

Then he couldn't remember whether he'd paid an important bill.

Then he got confused hunting for a train track in Penn Station, even though he'd commuted through the very same route for almost a decade.

At every slip we made nervous cracks blaming "chemobrain," the nickname for memory lapses and concentration problems that some doctors suspect might be side effects of chemotherapy. After getting infusions every week or two through nearly two years of treatment for pancreatic cancer, Elliot would certainly seem to be a candidate. It was scary to wonder whether the powerful drugs that were supposed to help him might also be taking their toll on his usually organized mind.

Families living with cancer can be haunted by such anxiety when relentless treatments wear out the patients they love. Often side effects - especially nausea and exhaustion - are more immediately noticeable than any benefits, and more visibly debilitating than the disease itself. To be sure, such side effects are harshest on the patients themselves, but they're not easy for their families either.

Let me say right upfront that it's a luxury, in many ways, to be dealing with side effects at all. Patients who deteriorate quickly have much bigger problems to confront. We're also fortunate that doctors have made great strides in alleviating nausea and other unpleasant corollaries in recent years. Even so, for many families, side effects are a defining part of the cancer marathon.

CHEMOBRAIN

The comical aspects of scatterbrained mistakes, such as leaving car keys in the fridge, have spawned T-shirts proclaiming "I've got Chemo Brain. What's your excuse?" One patient joked on the Internet about marketing "chemobrain Barbie, who forgets where she puts things and cries a lot."

Others don't always find it funny. Some patients worry that foggy thinking will hurt their job performance, and some spouses get exasperated by having to answer the same questions time and again.

"It's frightening," says Adele Kolinsky, a 70-year-old in Fort Lee, N.J., who had surgery and chemotherapy for lung cancer two years ago. She forgets chores sometimes right before she's about to tackle them.

"I used to do 16 things at once. Not anymore," says Adele, a retired nursing director. "I have to concentrate hard on one thing at a time."

Her husband, Ben, tries to soothe her, saying "the cute things she forgets are never important."

"He loves me so much he's afraid to see it," she insists. At times her forgetfulness even makes her wonder if cancer has shown up in her brain. "My own head is making me crazy."

Cancer patients have long complained of distraction, memory loss and trouble retrieving names, but only in the last decade have doctors begun tackling these concerns with systematic studies. Researchers argue that chemobrain is a misnomer; they prefer the phrase "cognitive changes associated with cancer," because chemotherapy might not be the true culprit.

Indeed, researchers say difficulty focusing or finding words could stem from the emotional stress of cancer or sudden hormonal changes brought on by certain treatments. Depression, fatigue and painkillers can cloud thinking, too. Aging, genetic predispositions and the disease itself might contribute. Researchers are trying to figure out which drugs, if any, might trigger cognitive problems, which patients may be more susceptible and what can be done to prevent harm.

Patricia Ganz, an oncologist at the University of California, Los Angeles Medical School, notes that many patients who complain about "chemobrain" are high-powered professionals who get frustrated by very subtle declines in juggling prowess. Some set such rigorous standards that they judge their thinking problems to be more severe than performance tests actually prove.

She also emphasizes that fears of cognitive changes shouldn't scare patients away from care; often these troubles are mild and short-term. "If you have a disease that's treatable and responsive to chemotherapy, concerns about this shouldn't get in the way of making treatment decisions," she says.

Nevertheless, such uncertainties are nerve-racking. I was struck by my giddy relief in a recent Scrabble game when my husband put together a phenomenal 8-letter word (spanning two triple-word squares) worth a whopping 140 points. In our days before cancer, I would have felt deflated by my sudden defeat. This time, I was thrilled with the evidence that his 57-year-old brain must be just fine after all.

MOOD SWINGS

Ginny Mickolajczyk, a 45-year-old psychotherapist fighting breast cancer, says her mood swings and short temper after chemo feel like "PMS times 100." She's in the midst of eight rounds, getting one dose every 21 days. She's exhausted after each one. To her dismay, she feels like she's a real mom to her two kids "for one week out of three."

Her 16-year-old daughter, Kaitlyn Connelly, says the bad weeks are tense.

"I just try not to do anything wrong," Kaitlyn says. "I try not to make my mom more upset than she has to be. Her mood changes from happy to sad real fast. She's more angry and irritable than usual. ... It means I probably spend more time to myself. I try to do homework, but sometimes it gets hard to concentrate."

Ginny's 11-year-old son, Chris, tries to get his homework done on the bus so he's free to get her cold drinks or warm blankets when she's resting in their Fair Lawn, N.J., home. He tries to be extra cooperative when she's cranky.

"If I'm outside playing and she says, 'Come in,' and I ask for extra time, she gets upset. It used to be she'd say OK, another 15 minutes," he says. At first he felt hurt when she was snappish but he tries not to be.

His advice to other kids living with cancer: "If your mom or dad has it, don't take it personally if they get mad at you. Usually it's not them talking, it's the chemo."

At least there's been an unexpected benefit from this ordeal, Ginny says.

"I've seen Kaitlyn and her brother bond more, and look out for each other a little more," she says with deep appreciation. "Before, they would fight constantly. Now they'll sit and watch TV together. The other day she asked him, 'How was your day at school' and he answered. I almost had a heart attack!"

NAUSEA

It's hard to overstate how easing a patient's nausea helps his whole family.

When my husband started chemotherapy, he was deeply queasy for several dreary days after treatments. I dreaded driving anywhere because unavoidable speed bumps and pot holes provoked moans of misery. Elliot would alternate between working at the computer and crashing on the couch. I would tiptoe around, and the kids would quietly refrain from having friends over.

He tried one anti-nausea drug after another, going through the space-age names that I'd heard on hospital soap operas; Compazine, Zofran, Reglan ... They didn't quite do the trick. Finally a nurse suggested a powerful series of three pills, one per day, called "Emend."

I call it "Amen." Suddenly, even the morning after chemo, he could eat breakfast, the kids could play without being shushed, and we could even pile into the car and go somewhere fun. We learned an important lesson - if you're not comfortable, speak up. Finding the right remedy can be trial and error.

Emend is expensive, however; at our local pharmacy, a three-day pack costs $418. We're very lucky insurance covers it.

There's another effective treatment that soothes the stomach and enhances appetite that many doctors wish they could prescribe: medical marijuana. It's legal for seriously ill patients in 12 states, but not in New Jersey.

Early on, when my husband dropped 40 pounds in a mere few months, I fantasized about challenging state politicians to look him in the eye and explain exactly why he wasn't allowed to have something that might make him feel better as he confronted a deadly disease.

Proposals to legalize medical marijuana have bounced around for years here without getting anywhere. Critics worry that letting patients smoke pot - even with a doctor's recommendation - might imperil children by making it more available.

I just don't see such a big risk. Elliot's stockpile of perfectly legal prescription painkillers is much more dangerous. Reckless teenagers have discovered they can crush the time-release coating on OxyContin tablets to get a rush. That can be fatal.

Countering side effects is a crucial element of defeating cancer; feeling better can remind you of the good life you're struggling to recapture and can motivate you to keep slogging through.

"You're fighting to get back to normal," Elliot says. "You have a recollection of the way you were before you got sick, and you just keep taking more medicines to try to get back to the way things were."

. . . . . . . . .

(The Record, Hackensack, NJ, By Leslie Brody, Staff Writer, May 30, 2008, Source: The Star Ledger)

Disclaimer:

The information contained in these articles may or may not be in agreement with my own opinions. They are not posted as medical advice of any kind.

[jaminkw]

Really good article Barb. Thanks

Judy in Key West

[Barb73]

Yes, Judy, I thought that the article was good, as well.

I found the subject matter to be of help to both Bill and to me.

Thank you for commenting on it.

Barbara