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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Like Clockwork

Your hair is supposed to fall out between the 10th and 17th day after chemo, with the most common day being the 14th.

That's pretty precise, don't you think?

For the first ten days after chemo, I ran my fingers through my locks every couple of hours, then checked to see if any hairs came off. Nope, not a hair missing. I vainly started to think that since I had an easy time during my first chemo, with relatively few side effects, that my hair wouldn't go either. I would be the one person to have no side effects from chemo. I'm special like that.

And, I have a LOT of hair. Even if some fell out, nobody would ever notice, right?

Today is Day 14. And, right on schedule (how did they know?) I'm shedding like a Labrador Retriever on a hot summer day.

But, precise as the expected hair loss date is - nobody tells you exactly how it happens. I'll bet it's not what you think, and as it turns out, I was running my hands through the wrong place.

Your hair falls out from the bottom up.

So, your friendly breast cancer blogger will describe it - but, as in many things cancer, the following is a TMI alert. Read at your own discretion!

First, you have to know a bit about me. I'm what they call hirsute. You don't have to open dictionary.com, I'll tell you what that means: I'm a hairy monkey-woman. I've always envied you blondies, who can shave your legs once a week and even if you don't, nothing shows. If I skip one day, my legs are like sandpaper, and I have to wear pants. If I miss a week, organ grinders start following me around. They say to wax before you go on vacation and you'll be smooth for the whole trip. Not me. Waxing, shaving - it's all the same. One day later, and I must begin again.

It's the main reason I never applied to go on Survivor - by the end of 40 days without shaving everybody would mistake me for a forest creature.

I'd have won though. Outwit, Outplay, Outlast. That's me.

So, you can only imagine the great pleasure I experienced right after my first chemo when the hair on my legs seemed to stop growing. I actually went five days without shaving and only had a little stubble. When I shaved that away - it never came back.

Smooth at last.

My hair remained firm on my head.

Survivor here I come.

Last night, I went to the bathroom. I did my thing and got up to flush. One of the tricks you learn when on chemo is to close the toilet lid before you flush to prevent germy spray from getting all over your bathroom. The e-coli laden backspray is gross in everyday life, and can make you sick with no white cells. So, as I close the lid, I notice something floating in the toilet.

And, I wasn't there for that.

It was a mess of short and curlies, floating like an armada on the surface of the water.

Shocked, I decide to test it. I reach down and tug, and out comes a pinchful.

I close the toilet, flush, wash my hands and then go back to my TV show.

I ran my hands through my hair, but only got a couple of hairs coming out.

This morning is a different story. I ran my hands through my hair and get ten or twelve hairs each time.

Tomorrow, it will start coming out like snow falling. I'll shake my head and hairs will fly. It started in the south pole and will have moved its way up north, like Santa.

At some point, in the next few days, I'll either have to cut it short or shave it to prevent my Roomba from choking. As my oncologist so delicately put it today - I'll look like I have mange. It doesn't come out all nice and neat, it mostly comes out in clumps with areas that still have long straggles, like a dude with a bad comb-over, or a diseased Wookie. So, most people just shave it off.

Maybe Survivor isn't in my future after all.

Being a Survivor - of course - is.


In either event, I have my buff all ready.


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When it rains...it pours...

My cat, Packet, passed away today - she had cancer.

It was only a month ago that my dog, Fudge died. He was 13 and huge and had bad hips. But, Packet was only about 12 - she was a rescue so we'll never know.

When we were looking to adopt a cat, I saw her. She was a medium/long haired cat, black, like my other cat Pixel. I picked her up and she settled in immediately into my lap, purring. She stayed there for the next ten years. She was always my cat - she slept on my back at night, sat on my lap during the day. I often though I should have called her "stalker" because wherever I was, so was she.

She even got my disease.

We had thought she had a tooth infection. Removing the teeth was going to cost $700.00, which is a lot for us right now. So we decided to give her antibiotics and see what happened. She got worse and worse. Her eye started leaking and swelling and I figured the abscess was going into her head, so we decided to remove the teeth and deal with the costs.

But, they told us this morning that it wasn't teeth after all. It was a form of cancer called fibrosarcoma and even with chemo and rads, she would likely die.

So, we let her go - snuggled on my lap as always.

It's been a difficult few months. And now, the animal who gave me the most comfort and who was always with me is gone.

Cancer took her.

But, it won't take me.

Nose Bleed

One of my earliest memories is of a hot, Sacramento afternoon. I was a curly-haired four year old, standing outside in the spring, wearing a sundress, heat warming on my shoulders. I stood by the car that was in the driveway and ate some cherries. They were juicy and ripe, freshly picked. They were so juicy in fact, plops of red were landing on the grey cement driveway, making splotchy patterns. Soon, my hands were covered with the sticky red juice. Then, I noticed it - the gushing from my nose. I put my hand up to wipe, and streaks of red cherry showed up. Those drops weren't juice - they were blood! I'm sure I squealed and ran into the house. That was my first bloody nose and the beginnings of a lifetime of sinus problems.

Fast forward to 48 years later. Last night, I was playing on the computer when I felt that old familiar gush. I grabbed a kleenex and dabbed. Blood all-right, but not red blood. This blood was purplish black - the color of those cherries I'd eaten long ago.

I leaned forward, squeezed for five minutes. The second I let up, it continued to gush. I got a new kleenex and pinched again, this time for 15 minutes. I gently unhinged my thumb and finger and let go. Gushing continues. Now I'm getting worried - 20 minutes of a nosebleed means I'm supposed to call the doctor. But, they will only send me to the ER to pack it so I'm not doing that. So I added ice to the squeezing and added on 20 minutes. At that point, it had slowed. It took an hour to stop, and then I rubbed the insides of my nasal passages with vaseline to prevent the bleeding from beginning.

I'm not sure why this happened - I had my platelets done on Wednesday and they were within the normal range. If they can go down that much in one day, that is a surprise.

I'll guess I need a humidifier to help with the dry air. And, I guess, a rocking chair and false teeth. I am starting to feel like a person who has cancer. Even the loss of my breast hadn't nailed that thought to my brain. All it took was a hard-to-control nosebleed.

Look Good, Feel Better

Yesterday's blood tests showed my white blood counts are extremely low: if you cough on me I'll die. Other than that, I feel pretty good. Having a low white count can kill you but it's asymptomatic. And, it means the chemo is working.

My appearance is suffering though - I'm starting to look like the beginnings of a cancer patient. My skin is dry as a bone. I've aged five years in one week. All the moisture has been sucked out of me, leaving wrinkles inside of wrinkles.

At the same time, I'm breaking out like a high school freshman marching band - red flags raised high. I've always been the unlucky middle-aged woman who had to keep her Stridex pads next to the Olay wrinkle cream - but this is ridiculous. It's only a matter of time before somebody calls me Pizza Face. Plus, my skin, where it isn't red and broken out, is turning yellow and sallow. My eyes appear sunken in, dark circles below.

I've not lost any hair yet but the texture is changing. It's getting brittle and frizzy.

Fortunately, I'd heard about a class that will help cancer patients deal with some of the physical changes that come along with treatment. It's put on by the American Cancer Society and is called, Look Good, Feel Better.

There isn't much that would get me out of the house on a frigid and dark Wednesday night, but the lure of free makeup is one of those things. At 5:30 pm, I set my GPS and off I went.

The American Cancer Society is located across the street from Arden Fair Mall - a traffic nightmare at 6:00 a couple weeks before Christmas. Fortunately, I found parking, ironically, behind a Hooters restaurant. I parked my one-breasted self (just call me Hoot) in their lot and walked to the suite where the class was held.

Upon arrival, we were given a goodie bag full of makeup, hundreds of dollars worth. The brands ranged from Wet and Wild to Estee Lauder to Chanel. One compact was so gorgeous I immediately thought I should give it to my stepdaughter as a Christmas present. Since we ended up using it in our lessons though, it's now mine.

An esthetician began with skin care and moved on to makeup lessons. She used a woman who had already lost her hair and brows as a model. I've been putting on makeup for years, of course, but have no idea how to recreate eyebrows on a bare forehead - now I know. One thing they recommended was to make sure we threw our old makeup away - since we now have no immune systems, any bacteria on our old makeup can be harmful.

After the esthetician was finished, a cancer survivor gave us lessons in wig-shopping and styling, and also gave us tips on headwear.

Did you know you can make a turban out of an old tee shirt? And, that it looks pretty good, at least as far as cancer-chic headwear goes?

Some hats were set out on the table for us to choose from. I picked three - one plain blue fleece one for sleeping, one brown scrunchy one that will go below my ears, and a pink hand-made knit one that won't cover a bald head but I thought might look cute with a wig. I've never been a hat person. Another thing that has to change.

The class is free and it's fun. They have them in every state. And, you get a ton of free loot. If you are experiencing cancer treatment - I recommend you sign up. But, try not to park near Hooters.

Doctor yourself - the follow-up

I now have my oncologist's personal phone number.
My MUGA scan is set for Monday.
Office procedures are going to be reevaluated.
My switch to a new oncologist is on hold for one week to see if things improve.
My wig pre-authorization is finally in progress. (It took a month)
And, I have a note authorizing me to continue my medical leave.

It took the help of my insurance company to resolve it. I contacted them, and a very helpful lady named Susan tried to get through with me on a conference call. She waited on hold for nearly an hour and told me that it was completely unacceptable. I agree.

This led to my doctor calling me back and giving me his cell number, and an apology for overlooking the test, which he agreed I should have had.

I told him that things happen, and I can understand the oversight but not being able to reach anybody in the office to be able to correct it was the biggest problem. Again, he agreed and mentioned that it was an ongoing problem that cropped up now and then. I warned him that I'm not a needy patient but I'm not calling the office again, especially if this is a common problem, so he may be hearing from me about something stupid - like a wig pre-auth. He agreed to that too.

The moral of the story: Don't be afraid to speak up! And, call your insurance company if you have any problems - they are more helpful then you might think.

Doctor yourself

I can't emphasize enough how important it is to be informed and involved in your healthcare. Unfortunately, in this day and age, that means you have to understand that you cannot completely trust that your doctor will do the right thing.

Maybe you have a wonderful doctor, who cares about you and who wants the best for you and will do everything perfectly. Maybe you have a caring doctor, but one who is overwhelmed with a caseload he has to take on to make his practice work and who overlooks things. Maybe you have a doctor who long ago lost interest in his job and like many people, is just doing the bare minimum to satisfy the job requirements while waiting for his next vacation. Maybe you have somebody incompetent. The fact is, you really can't know these things in the few minutes you'll be seeing your doctors. All you can do is know what is supposed to happen in the course of your treatment and if it doesn't happen, find out why.

It is long, long past the time when anybody should put blind faith into any medical professional, or treat their every word with reverence. Unless you find Marcus Welby practicing medicine - my best advice to you is to assume you are on your own and question, question, question.

Like I said before nobody is going to care about your treatment more than you are.

That leads me to my own situation.

I've read lots of studies on HER2+ breast cancer and the use of herceptin. Because this is a newer treatment, most of the studies on herceptin were in conjuction with an anthracycline chemotherapy drug called Adriamycin. Adriamycin causes cardiotoxity (heart problems). Herceptin causes cardiotoxity. In combination, a good percentage of people on this therapy got heart disease. Now, in most instances the heart problems were reversed after treatment, but the recommendation is to give heart scans before starting AC + H chemo.

The latest and greatest in chemo for HER2+ is TCH, which is what I'm getting. Taxotere, Carboplatin, and Herceptin. Taxotere is the substitute for Adriamycin and doesn't have the same cardiotoxic effect.

So, although I know a heart scan is routinely done for people using herceptin, I thought it was only for people still getting the AC/H regimen.

I was angered to discover yesterday, that this isn't the case. Right on the Herceptin packaging label, it says that everybody starting herceptin, whether with andriamycin or with taxotere and carboplatin should get a baseline heart function test:

Herceptin can cause left ventricular cardiac dysfunction, arrhythmias, hypertension, disabling cardiac failure, cardiomyopathy, and cardiac death.Herceptin can also cause asymptomatic decline in left ventricular ejection fraction (LVEF).
There is a 4−6 fold increase in the incidence of symptomatic myocardial dysfunction among patients receiving Herceptin as a single agent or in combination therapy compared with those not receiving Herceptin. The highest absolute incidence occurs when Herceptin is administered with an anthracycline.

Conduct thorough cardiac assessment, including history, physical examination, and determination of LVEF by echocardiogram or MUGA scan. The following schedule is recommended:
Baseline LVEF measurement immediately prior to initiation of Herceptin
LVEF measurements every 3 months during and upon completion of Herceptin
Repeat LVEF measurement at 4 week intervals if Herceptin is withheld for significant left ventricular cardiac dysfunction [see Dosage and Administration (2.2)]
LVEF measurements every 6 months for at least 2 years following completion of Herceptin as a component of adjuvant therapy.

I asked around on the cancer forums, and every single HER2+ person taking herceptin with any kind of chemo had gotten either an echocardiogram, or a MUGA (radioactive) heart scan.

I didn't get one.

With all my research, I didn't read something as simple as the prescribing label.

So, today I called my oncologist to find out why no test had been ordered for me. As is normal for them, I waited on hold for 20 minutes, which is my limit. I hung up and called back immediately and refused to be put on hold again. I explained my situation to the nurse, and they are going to ask the doctor and call me back.

I have no doubt that if I hadn't come across the packaging label, I wouldn't get a heart test at all.

Maybe my doctor has new research that says having a heart scan while on herceptin is no longer necessary. Maybe Genentech just hasn't gotten around to changing their prescribing label. Maybe he's cutting edge, in his short-sleeved shirts and ties with old Fords on them.

Or, maybe my doctor is incompetent, busy, uncaring, or all three. Yours might be too.

Don't trust that they aren't.

Here's the deal for me. I can understand an error like this. In my life, I've made errors too. I've forgotten things that are important.

What I can't understand is why I've called their office three times, been on hold for 20 minutes each, and twice have not had a return call.

Mistakes happen and I can forgive that. I can't forgive people who don't return my calls, doctors or no. I can't forgive people who obfuscate or lie. So, I am seriously considering finding another oncologist.

It depends on what is said when I get a call back.

Here is some advice to those newly diagnosed. Find a cancer forum and participate. Search for blogs like mine. Find out what other people are getting in the course of their treatment. Do the research but also read the prescribing information! Pay attention. We are not doctors and have not been trained to understand these things. But we aren't stupid either. And, when it comes to cancer and oncology, the treatments are pretty much rote, at least in the early stages. So, find out what your peers are getting and expect that for yourself, and if it doesn't happen, find out why.

I'll let you know.



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Sore head

http://www.flickr.com/photos/fifikins/ / CC BY 2.0

You know how when you are a little girl, your mother is brushing your hair to get the tangles out? She gets frustrated and pulls too hard and screams at you to SIT STILL, and keeps smacking the brush into your head to get it over with. And, after your tears dry, you are left with a sore head.

Or, remember when when you were a teenage girl and you put your silky hair into a high ponytail. You are just the cutest thing, walking around with that swinging, shining piece of hair behind your head. You feel so sassy. But, after 12 hours of back and forth swaying, you have to peel the elastic out, pulling chunks of hair with it, and when you brush it out, your scalp is tender from all the pulling.

Maybe you were 20 and saw the latest style: tiny waves all over your hair. The fashion magazines say it's easy to get at home! Just wet your hair and braid it in small, very tight braids and sleep that way overnight. You spend hours taking 1/2 inch sections of hair and braiding them together. The next day, you brush out your braids, carefully from the bottom. Disappointingly, your hair is more frizzy and tangled then wavy - and the pulling from sleeping on the tight braids left a painful scalp. You have to scratch your head all over to make it feel better.

Maybe you are old enough to remember the Toni home perms. Maybe you tried it. Maybe you burned your scalp a little.

Tender scalp - we women have all felt it at one point or another.

That's what mine feels like now, five days after chemo. It's a sign that my hair will go. Supposedly hair goes between 10 and 20 days after your first treatment.

The way it feels, I'm betting on 10.

Haven't lost a one yet though.




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Chemo Side Effects - Taste Changes

So, it is my third day after chemo. Stomach problems have been mild and cleared up with the meds and healthy eating. Yesterday, I did get a headache, but I always get a headache. An imitrex pill and a nap helped. I felt a bit underwater and out of it. It's kind of like having a hangover without drinking any alcohol, or having the flu without being infected. I'm fine today - I'm a bit achy but nothing really important.

So far, the weirdest side effect has been the taste changes. Some might remember that I had my lingual nerve damaged in a dental treatment. It has not healed yet (maybe not ever at this point) and my taste sensation has been down by about 90% ever since. I have a strip on the left side of my tongue that still works but that's all.

So, I figured that whatever weird taste changes everybody else on my chemo regimen described wouldn't happen to me.

Since I couldn't taste anyway, you know?

Well, I was wrong. This taste distortion apparently goes directly from food molecules to brain neurons, bypassing those pesky tastebuds. Of which I don't have.

Everybody describes the taste as metallic. That doesn't begin to go far enough.

It tastes like you are a dumb little kid in the frozen north, standing by the side of the road, who was dared by mean kids to put your tongue on a frozen metal light pole that had recently been scorched by fire after a nasty traffic accident. You put your tongue on the dirty black of the pole and it freezes there. The kids laugh and run off, and you are stuck there, tasting the cold metal, the dirty, blackened soot from the remnants of the fire. You gather your courage and rip your tongue off that pole, and the bleeding starts and you pass out. You wake up, dried iron-blood, soot, and metal taste in your mouth, just as tender-hearted homeless guy comes by. He feels sorry for you and offers you a drink, but he's drunk so he hands you the wrong bottle and it's warm, pissy, backwashed beer. You take a sip and gag, and he realizes his mistake and gives you a bottle of water instead. This is slimy water that he's taken from a creek somewhere, and after you take a mossy sip, you see tadpole droppings and green slime in the bottle.

Your mouth on chemo tastes like metal, dried iron blood, soot, pissy-spit beer, slimy, mossy water with bum-backwash and tadpole shit in it.

And that's with lingual nerve damage.

I feel so sorry for you who get the full effect.



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My First Chemo Session

At 2:15, I walked into the oncologist's office and was taken back to the infusion room. It looked like a large storage room, filled with a bunch of old gray lazy-boy reclining chairs up against the walls all covered with a mixture of old, donated blankets that I don't want to think about too long. There were a couple of grey wigs stuck in a corner that I presumed were loaners as well - and those I really don't want to dwell upon. There were poles for IVs near each chair, with a big open yellow waste bucket between them.

Here is what was in the bucket:



Looks like Vincent was the patient right before me.

I was one of the first to arrive for that session and was waved over to chose my chair. Because I was sporting a cold, I decided to take the furthest one away - the last thing I want to do is make anybody sick. From my vantage point, I had a full view of the room, and was surprised to see, as it filled up with those of us who got The Cancer, that I was, by far, the youngest person there. By at least 20 years.

It's been a long, long time since I was the kid in the room.

My nurse came to start my IV and she was not happy to discover that I was to have a 90 minute herceptin loading dose. Oh, she was nice enough about it, but I could see that she was mentally rearranging her schedule. The long loading dose meant I'd be doing herceptin until 4:00, and still had the pre-meds and the carboplatin and taxotere to go. Most people have told me that it takes five or six hours for your first chemo infusion so I was surprised that they had scheduled me for a 2 1/2 hour session. Now I know why: mistake.

Herceptin went in and I sat there, playing with my iPhone, chatting with my husband who had come to keep me company. No side effects from it, not even the herceptin headache that I feared.

I spent some time watching the other patients. Most of them were querulous and complaining old people, asking for lots of special favors and needing pillows propped and wanting medication samples and detailing every ache and pain. The nurses were pretty patient with all the whining - I wasn't. I had to put my headphones in to drown it out.

Nurse: another job I'm not cut out for.

One woman, who seemed to me to be pretty clearly dying, had come from over 100 miles away, just for saline. Her son had driven her, and she had to come back for chemo the next day. I wondered why she had to go so far. Seems very sad that a woman who probably had just weeks left to live had to drive 100 miles each way to get her treatment,especially since there happen to be hospitals where she lives. But, how many cancer patients do I know - maybe she wasn't dying? She complained a lot too: how long the infusion was taking, how long the drive had been, how it was taking too long to get treated - which only made me want to never take off my headphones. I'm an evil person for being annoyed by a probably dying woman's complaints. I smiled at her a lot to make up for it.

At at little after 4:00, the herceptin was done. I got up to hit the restroom, dragging my rolling pole with me. All the elderly in the room smiled up at me like I was a curly-haired and precocious 3 year old in ruffled panties and a sun dress. Honestly, this chemo thing is good for the ego.

Time for the pre-meds; the steroid that is going to give me the energy to clean my house and an anti-nausea med called Aloxi, and then the chemo. As the nurse hung the bags on my pole, the 90 year old man next to me started making jokes about how I was getting more than anybody else and should share. I was joking back - until his wife of 69 years told me he couldn't hear me. So, I just smiled at him from then on.



Taxotere went in first. I got a metallic taste in my mouth but no other side effects. I sucked on mints to help with the taste and read a funny book a friend had sent, which was very helpful in taking my mind off this weird situation I found myself in.

At about 5:30, it was time for the Carboplatin. Obviously, the nurse was going to have to do her overtime, but I'm very thankful that she was not complaining about it. I had fears that she would open that drip up all the way to get home on time, but she remained professional. And, good thing, as I did have hot flashes with the carboplatin, and the drip had to remain low most of the time. At 6:45, I was the last person there.



The janitor had showed up, most of the nurses had left. My nurse and one other were working on a new computer program, and each time I looked up at my drip, it still seemed to still be halfway through.

My husband and I agreed that next time she checked on me we were going to ask for it to be opened a bit wider. Hot flashes be damned - it was time to get out of there and eat!

We did, she did, I ignored the heat and we were done by 7:30.

The worst part of the whole thing was when she ripped the bandage holding my IV in and ripped off the hair on my arm. I joked at at least I wouldn't have hair next time, and she seriously said, "Oh no, not everybody loses their arm hair, it seems to be the last to go."

What?! Are you telling me I'm going to lose my head hair, my nose hair, my eyebrows and lashes - and still have monkey arm hair?

How cruel is this disease, anyway?

Life is seriously not fair.


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Why I need chemo

People have asked, why, if I'm node-negative, I need chemo. The answer lies in the size of my tumor along with my HER2+ status.

According to various studies done, the risk of recurrence is quite high for HER2+, even when node negative and even with tumors smaller than 1 cm. (My largest invasive one was 3.4 cm and I also had other smaller invasive tumors).

One looked at 5-year recurrence for women diagnosed between 1990 and 2002 with HER2+ tumors. They found that 30% had recurrences, and this was for tumors between 0.5 and 1 cm. It is commonly thought that the larger the tumor, the more likely the recurrence - estimates for me range from 40 to 50% chance of it coming back with no further treatment.

Plus, 15% of the women studied had recurrences with metastatic disease - meaning stage IV. Frightening stuff

After chemo and herceptin, only 7% had recurrences. Most of the recurrences happened between 1 year and 3 years after treatment.

So, you can see, that as much as I don't want to do this chemotherapy thing, I really have to if I believe in science and statistics, which I do

Herceptin is very new. There is conflicting information regarding whether dropping off herceptin after your year is up means it will eventually lose its efficacy. Recommendations are one year - there are people doing it for two now. Stage IV gals get it weekly forever and it seems to be prolonging their survival.

Time will tell but I'll be paying attention.

Anyway, that is why I have to do chemo.

Off I go.



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PreChemo

I was super-excited about today - the day before my chemotherapy starts - because I get to take a steroid. Actually, two: one in the morning and one later in the day. This steroid helps prevent fluid build-up around the heart and lungs and can also help prevent nausea in chemo patients.

Why was I excited about it, you might be wondering? Well, I hear that this medication can give you energy. People have reported cleaning their houses all day, not being able to sleep at night and still having energy left to do more the next day.

I want some of that.

Naturally, I put off all my household chores for the past couple of weeks, waiting for today. You would too, I know. Why not wait until you know you'll be working like a maniac anyway. No point in using steroid-induced energy cleaning when it's not even dirty, is my way of thinking.

So, when I woke up this morning with a serious sore throat, I was sorely disappointed. No steroid? No clean house?

No chemo?

As much as I don't want to do this chemo thing, I am mentally ready. I don't want to be put off another week. I can't get it over with until I start.

I called the oncologist to find out if I can keep my appointment. I believe that I probably just have the beginnings of a cold and it shouldn't make much difference, but I figured I'd better be safe - for both me and the other patients I may come into contact with.

Whew! The nurse said as long as I didn't run a fever I should be okay. Call them in the morning if anything worsens but so far, we are good to go.

So, I popped my steroid.

As I waited for it to take effect, I sat at the kitchen table and surfed the web, did some online shopping and bargain-hunting, forum posting, game playing. Every once in a while I'd check the clock, waiting for that energy surge that meant my house would soon be sparkling.

Three hours later, I'm still sitting.

Wouldn't you know, the one side effect I really, really want, I don't get.

I bought six wigs already.

Maybe that means I won't lose my hair.



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