Chemo Brain Strikes!

At some point during chemo, you get forgetful. This is commonly known as "Chemo Brain." New imaging studies show this isn't just imagination - parts of the brain responsible for memory and concentration seem to show shrinkage, although nobody is sure why.

Being an ADD sort, my joke was always that nobody would ever know when I got Alzheimer's disease. As an aside - and asides are one of those things we ADD people do best - my all-time pet peeve is people who say "Old-timer's" for Alzheimer's. (Or All-timers, which makes even less sense.) Why? Do you really not know the proper word? Now you do, so cut it out.

Anyway, now my joke has changed to, "Nobody will know when I get chemo brain."

I'm one of those annoying people who loses her keys the instant she gets inside the house. And yes, I've been known to call my husband at work saying, "Honey, have you seen my keys?" I can't ever find the shoes I want to wear. I can find the one that is under the chaise, but where is its mate? It's a mystery that won't be solved until spring cleaning. Naturally, I can't remember where I've parked the car. I could go on, but I'm sure you know somebody like me and they probably drive you crazy.

Over the years, I've learned some coping mechanisms: I now have an alarmfor my keys. I push a button and my keys beep and there they are, under the couch or behind the coffeepot or wherever I dropped them when I walked in the house. My shoes are a slight problem as you can't alarm them (and be stylish), so I have a hundred pairs to choose from. If I can't find the ones I want, I have another somewhere that will work. Problem solved. Parking is trickier - but knowing I have a finding-disability, I pay extremely close attention to where I park, especially in strange places. I take a picture of the row number with my cell, I count steps to the curb, I look for a landmark, I mentally turn around and walk back to the car so I know what it looks like from the other end. It is a deliberate plan, and I have to make it each time. (I learned this after losing my car in a college campus parking lot on a blustery, rainy day and not being able to find it for three hours and finally, soaking wet and in despair, having to call my heroic husband to leave work to drive me through all the lots to get it.)

In places I regularly frequent, I don't pay such close attention. At my regular grocery store, I've learned to park in one of two rows. I go up one section and if I don't find a space, I go down the second row to find a space. Those are the only rows I'll park in, and that way, I am not looking through the entire parking lot when I'm done. In ten years, I've never forgotten which row I was in: A or B.

Until yesterday.

I had my herceptin infusion and blood check at 11:00. I was headachy, and my white counts are very low. The nurse told me to stay home and avoid people as I am very vulnerable to illness, and to not eat fresh fruits or vegetables as they could make me sick.

Of course, as soon as the nurse told me to stay home I remembered errands I had to run. (I highly recommend you never tell me not to do something, because that will almost guarantee that I'll do it.)

The last errand was to the grocery store, but I promise, I was a good girl. I had some alcohol wipes and wiped the cart before I touched it and kept some alcohol sanitizer in my pocket that I used liberally. If I heard somebody coughing or sneezing I'd change aisles to avoid them.

Now that I've had surgery, I can have the bag boys take my groceries to the car without feeling guilty, and when I wear my scarf as I was yesterday - everybody knows why I need help. Yay for an excuse to be lazy! I chatted with the nice young man as I confidently walked to my car, when suddenly I realized I had no idea where it was.

It has to be this aisle, right?

I stopped dead in my tracks and looked - I didn't see the car anywhere. Well, it could be only one of two aisles, so I told the boy that I thought we were in the wrong aisle. He was very kind, saying, "No problem, I like a good walk."

We walked half way down aisle number 2 - still no car! In desperation, I told this teenager, "Uh oh, chemo brain! I have no idea where my car is. It's a white SUV and in one of these two aisles, do you see it?" I got lucky. This kid had an aunt with breast cancer and completely understood chemo brain. He led me straight to my car.

In the first aisle. Right where I'd stopped and said it wasn't in that aisle.

So, what is my point? Oh yeah, Happy New Year! I hope your 2010 is full of health, happiness, acceptance, and peace.

I almost forgot.

Darn chemo brain.


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Top Four Tips for Getting Through Chemotherapy without Puking, Straining or uh, Letting Loose

The below four tips were compiled by me, culled from various online, paper, and even medical sources. I have tested them myself and so far, have had great success keeping the worst of the chemo side-effects at bay.

Except that pesky baldness thing.

It could be that I'm lucky - but I do believe it has to do with the tips below so I'll share them with you. If they help, please let me know. If you have your own tip, feel free to add it in the comments.

Tip Number 1. Water, water, water.

I bought a 64 ounce Brita Pitcher and drank a full one every day, beginning the day before chemo, the day of, and the day after. I did that, not for the super-healthy pure filtered water, but so my ADD self can keep track of my water intake. If I left it up to me and the faucet I'd have no idea what I drank, but I would wonder why there were glasses all over the house.

Keeping track, I know how much I drank ... and wonder why there are glasses all over the house.

Chemo meds are filtered by the liver and excreted by the kidneys. Flushing your body will help remove the toxins faster, will help aid in digestion (meaning keeping you regular), and will keep your skin from drying out too much.

Oh, and an added bonus - lots of water makes your veins plump, so if you are trying to avoid a port, this might help your nurses give you a nice stick.

Don't like water? I heard a chemo patient say that. Think of it this way - if you are going to have to visit your bathroom during chemo, wouldn't you rather it be for aggressive water consumption rather than puking, straining, or the runs? (Or all three?)  And, Aqua Delight has a clean, fresh flavor and helps cut through metallic taste.  You have nothing to lose by ordering it.



Tip Number 2. Fiber, fiber, fiber.

I begin a high fiber diet the day before chemo. Since the medication kills off your fastest-growing cells, including ones in your digestive tract, common side effects are either explosive diarrhea, the kind of constipation that requires a Lamaze coach, or, horrifyingly, both. Most people assume nausea is the worst part of chemo - nope, it's actually what goes on at the other end. A high fiber diet can prevent both conditions. It's worked for me.

Don't wait to start - I begin it the day before chemo. Here is a list of foods that I typically eat during chemo week:

Breakfast:
All-Bran cereal mixed with Total Whole Grain
Pear

Snack:
Pro-biotic yogurt
almonds

Lunch:
Progresso bean soup (split pea, lentil, etc.)
Whole grain toast
Carrot or celery sticks

Snack:
Dried apricots or prunes or Trader Joes Dried Fruit Fiberful bar.
Raspberries

Dinner:
Since I cook for my family, I do a normal dinner consisting of:
Meat,
Starch
Vegetable

I do a brown rice or sweet potato as the starch and load up on the veggies for me. Artichokes are a very high fiber veggie.

Dessert. I've never been a sweets person, but I do have a cup of hot tea and two Metamucil cookies. They come in apple and cinnamon and sugar.

I eat like this for a week to ten days after chemo, or until I'm sure my digestive system is functioning normally.

Okay, I know what you're thinking. You'd rather have your cancer kill you than eat a taste-free diet such as this. Well, good news! You won't be able to taste anything anyway, so it doesn't matter much what you eat. Might as well eat to alleviate symptoms cuz you sure as heckfire aren't going to be able to eat for enjoyment. Nothing says you can't have a cupcake or cookie or something too, if that's the way you swing. But, you really want the bulk of your diet during chemo to be, uh, bulk.

Tip Number 3. Medicine, Medicine, Medicine

I do not deny myself a prescription med at any time. Long time friends will smile knowingly. I grew up in the 70s, what can I say? Better living, and all that.

I was given Compazine and Ativan for nausea. If I even dream I'm getting nauseous, I pop a pill. If I see somebody on TV wretching, down goes a Compazine. I take the Ativan at bed just in case I wake up feeling queasy, you never know.

I learned after surgery that it is a lot harder to control pain or nausea once it starts than to prevent it in the first place. So, no waiting on the meds. No being brave. No saying, "Oh, it's only a little queasiness, I can take it."

No, don't take it. Be a wimp and slam the drugs. You get no points for bringing yourself to the point of a three hour puke. You probably won't need them after five or six days anyway - if that long.

Tip number 4: Mouth Care.

Chemotherapy also kills off the fast-growing cells inside your mouth. To prevent mouth sores, it's time to listen to your dentist and brush, floss and baby your teeth. I purchased biotene toothpaste and biotene mouthwash. Instead of my faithful Crest or Pepsodent or whatever is on sale for a buck with a coupon, I'm using expensive toothpaste. Brush often, brush well, and floss.

And, here is the important thing: bathrooms are dirty, dirty places. I bought myself a toothbrush sanitizer Overkill? I think not. Was it Mythbusters where they showed the toilet flush and the germs going on everything in the bathroom, from toothbrush to soap? Maybe it was Time Warp. I can't remember but I do recall that it was truly disgusting, and when I found out chemo patients are supposed to close the toilet lid before they flush to prevent that e-coli backspray, it brought that horror story back. Even more horrifying, I live with all males and realized that closing the lid wasn't going to happen.

So, my toothbrush is sanitized after each use. E-coli and chemo just weren't made for each other.

And, I've not had a sore.

There is also a new product on the market called Luvionex Dental Gel which is supposed to break the bond between plaque and your teeth.  Keeping your teeth clean needs to be a priority for a while.

Those are my top four tips for getting through chemo but as always, your mileage may vary. I take taxotere and carboplatin. There are 30 other types of chemo drugs out there. What works for me and my chemo may not work for you and yours. What I do know, is that I have had a much easier time with my chemo than others who are on the exact same regimen as me and who are not doing the above. Take from that what you will.

But what if those tips don't work? Should you have anything on hand, just in case?

I do.

Senekot is a gentle laxative. At the first sign of blockage, take one. I hear the longer you wait, the worse it gets. I know a poor soul who had to be disemboweled, er, I mean, disimpacted at the hospital.

By nurses.

Based on my last experience with nursing care - that is is one medical procedure I think I'll skip.

On the other end of the spectrum, you should keep some immodium around. Again, start taking it at the first signs you need it.

Heartburn can be a very common problem. I had minor heartburn my first round of chemo but made the mistake of buying Prilosec that takes a week to start work. You may want to have Tagamet instead. It works immediately. Fortunately, I've not needed it this round.

Claritin is supposed to be good when getting your neulasta/neupogen injection. Since I have not had that shot yet, I don't know if it helps or not.

(For those who don't know, when your white counts get down too low and you can't fight off any infection or receive chemo, they give you an injection that builds your white cells.) Side effects from this one are serious bone pain and claritin is supposed to help you with that, indicating it might be an allergic reaction.

Few get out of chemo without a white cell booster and I may get one next week, so I'll report back.

I guess I should mention exercise. This is one I don't participate in myself. But, I hear it's good for you. I hear it can give you energy when you start to get tired.

I'll leave that one for you to decide.

Me? I have a book waiting.


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Merry Christmas from the fuzzy chicken

My hair is now 1/2 inch around, and with tons of bald spots. I look like a sickly chick.

I took a photo to show you - the lighting came out extremely flattering. It's a Christmas miracle. I do not look this good.



I took some in the salon when I was getting it chopped, so stay tuned for that story and an honest photo.

I hope you are all having a great Christmas, as I am. I got the entire Sex and the City series on DVD now so I don't plan to leave my house for a month.

And, I can finally see the year where Samantha gets breast cancer. I'm sure she looks fabulous.

Chemo Christmas Carol

Sung to the tune of "I'll be Home for Christmas"

I'll be bald for Christmas
Just you wait and see
Hair will fall, like glistening snow
As my follicles slowly flee.

Christmas Eve will find me
At the wig supply
Oh, I'll be bald on Christmas day..
'Til it grows back...in.....July.

~~Adapted by JJ Hunt, BC.org

Day 19 after Chemo - Hair falling like snowflakes

Somethings are hard to describe. So, with all this new-fangled technology we have, I thought I'd show you instead.

Be warned: the ending of Survivor 19 is mentioned in my video. If you haven't seen it yet - please don't watch:





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MUGA Scan

MUGA is a funny name for a medical test. It sounds like the kind of test they have in New Jersey, doesn't it? "Hey youse, I'm a gonna muga you heart. Whadda you mean, will it hurt? Fahgeddaboutit!"

Well, fortunately I'm in sensitive California. While the kind and possibly gay tech, Phil, was drawing my blood, he told me about the three kinds of scones he'd made for a recent birthday party (his lemon blueberry with the lemon peel glaze were to die for), and then he gave me his Kale soup recipe. Which I made that night. Delish! I'm totally going to ask for him next time I have a MUGA scan. I can always use some new recipes.

The MUGA (MUltiple Gated Acquisition scan) monitors the "ejection fraction" of your left ventricle - to see how much blood it pumps out. Herceptin can cause a problem with left ventricular ejection so they keep a close eye on it (after their patients remind them, of course). The test is conducted by removing some of your blood, mixing a radioactive isotope with it, and then putting it back in you to trace your heart beat. It provides a moving image of your heart - so naturally, I asked Phil if I could see.

I have never seen my own heart beating, have you?

It was an easy test, like all of them. My vein did get blown during the reinjection process and we had to switch to the back of the hand, but that worked fine. It's a good thing needles don't bother me - cancer and needle phobias don't go well together.

After I began to glow, we went into the nuclear room where there was a cool, high tech looking donut machine.

This isn't the one I was in but it looks like it:



This was the third or fourth test I've had that required me to lie on a table that measured 18 inches wide. It is fine for me but I began to wonder about how my larger cancer sisters and brothers managed. Is this some kind of cancer discrimination against the fat? Since Phil and I had a good relationship and were swapping recipes and everything, I figured I'd ask him.

"This table is really small - how do your bigger patients manage on it?" He laughed and said only small people asked that question. (And here I thought I was asking an original question.) He said that because the spine and the skeleton was the same in most people no matter the size, they just managed to fit on and whatever hung over - did. He said nobody had ever had a problem.

Whew. No discrimination involved. I still wonder why they make them so small though. It's not like an airline seat where they are maximizing revenues.

Anyway, he hooked up some heart monitors to me, I got on the skinny table and he slid me into the machine.

And, as I do in all of these machines - I took a little nap.

He woke me half way through to tell me to put my left arm up above my head and then I noticed my beats per minute were being displayed on a machine to the right. I thought I might try and concentrate and get my heartbeat down to the low 50s - a little biofeedback test - but then I fell asleep again.

He woke me by asking me if I wanted to see my heart beating image. I eagerly said yes, and he took me back to the room where the computer was.

And there I saw it - a movie of my heart pumping steadily and strong.

So, to my dear husband - I know sometimes it may not seem like it, but I do have a working heart. I saw it with my own eyes.

Bada Bing!

Mama's got a squeeze box

Mama's got a squeezebox
She wears on her chest
And when Daddy comes home
He never gets no rest
'Cause she's playing all night
And the music's all right
Mama's got a squeezebox
Daddy never sleeps at night

You haven't lived until you have had a tissue expander implanted under your chest muscle and filled with saline every three weeks. After last Monday, I have 160 ccs of saline under there, which makes for a pretty fabulous little toy. Especially so for the ADD women among us, not that I would point a finger at myself.

Unless that finger gets to poke a water balloon inside your own body - then who could resist?

Not even you, don't lie.

It's pretty hard to keep my fingers off my own internal water balloon. The skin and surrounding area is numb, but inside the expander I feel bubbles that I can push from one area to another. You can squeeze it on the left and it'll get bigger on the right. Every morning when I wake up, depending on how I sleep, it's shaped differently, and I have fun trying to mold it back into a breast-like form. Or a pyramid. Or a dog.

Whatever strikes my fancy.

You've played with water balloons, right? You've pushed the water back and forth - taking one end and squeezing it to the other, trying to make a little blister poke out on the side and stick it back with your finger - I know you have.

Well, I get to do the same thing - only inside my body.

You can't tell me that's not freaking awesome.

It's especially useful when your iPhone is out of battery power and you are sitting at a Starbucks sipping your holiday Peppermint Mocha. I don't know what is more fun - pushing the bubbles in your budding boob back and forth, or watching the Starbucks hipsters try not to stare as you do it.

Okay, okay, the truth.

I confess.

I only do it at home.

I still have some manners.

That is, until the day I can figure out how to throw it at somebody. Wouldn't that be fun?



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