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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Happy Thanksgiving

To all my American readers, family and friends - I wish you a very happy Thanksgiving. There is so much to be grateful for this year - friends and family who have stepped up to the plate (no Thanksgiving pun intended), including many who surprised me with their caring. Coworkers who put up with my distraction and absences and family who have taken on the bulk of the work that I used to do. I'm grateful for the new friends I've made through this cancer experience. And, I'm very thankful for medical researchers who created the targeted drug, herceptin, that will allow me to have many more Thanksgivings.

Eat lots of turkey and pie, and enjoy your family and your day. I leave you with one of my favorite Thanksgiving memories:



A good rickroll never gets old.

H1N1

I am always impressed with how efficient the government is. Especially the California government. And, most especially the Sacramento County government. Everything runs so smoothly here, you would not believe it. It's all a Swiss clock and the trains run on time too.

Okay, we don't really have trains. And, there are lots of potholes in the streets and the traffic lights don't synch and the cops won't come unless somebody pulls a gun on you and even then it takes an hour. But, you know what I mean.

Naturally, when I found out that the government was going to dole out the H1N1 vaccination instead of doctors, I was thrilled. After all, what do physicians know about who should get the swine flu shot? Why should they make that health care decision, when the government is perfectly capable of deciding for them?

And really, why would I even want to get it from my oncologist in his office when I can get it at a homeless shelter surrounded by thousands of citizens and injected by county health workers?

This vaccine is in short-supply. So, it would seem that each city is given an allotment and are left to individually decide how to handle the distribution.

Some of the more inefficient cities distributed it to medical personnel and hospitals. Some gave it to Walgreens Pharmacies. Some gave it to large employers and universities, some distributed it in schools and some did a combination of things.

Sacramento decided that they were going to open clinics in various homeless shelters, community centers, and churches throughout the city every other day or so. Only those people designated "high risk" were to get the shot for the first few clinics.

High risk means pregnant women, healthcare/EMS workers, people caring for babies under 6 months, and adults 24-64 with specific medical conditions (including those who will undergo chemotherapy)

But as our local newspaper wisely reported - it's all on the honor system. Nobody actually has to have any kind of proof they are in the high risk category - nobody will check. All you have to do is say you have a condition and bam! Needle in the arm.

Thank God the newspaper published that tidbit, just in case somebody didn't think of it on their own.

Along with that helpful advice, the paper published the dates and times of the clinics. I start chemo December 2nd and am supposed to get my shot two weeks before. There was a clinic near me, Saturday the 21st, which was the last one available to high risk people (or those willing to lie). It was 11 days from my chemo date so I was cutting it close but it was the only one I could get to in between doctors appointments. I marked my calendar, dreading it, because reports were that over 5000 plus people were showing up, but I work in a school, if I want to go back I have to brave the crowds.

So, I'm hanging around the house last Thursday listening to the radio, and suddenly my ears swiveled towards the radio like a cat's. The weekend flu clinics were being canceled due to rain, a decision made by our public health officer Glennah Trochet. The exact quote - and you can't make this up - is that the county health department was worried somebody might slip on the sidewalk.

I kid you not.

I checked the forecast, figuring we were in for a huge early-season storm.

The forecast? 54 and 20% chance of showers.

Honestly, I'm so impressed. The government is so concerned about our health that they aren't going to allow cancer patients to get the shot in time for chemo - because we might slip on the sidewalk.

Is that efficient, or what? Thank GOD they didn't dole it out to oncologists or other doctors - why, we foolish people might have gone out in the rain to get the shot!

It's too bad private business aren't as concerned about our health. After all, the Sacramento Kings play on rainy nights, the B Street Theater insists the show must go on in spite of any rain, concerts continue on days of precipitation - even those limp-wristed San Franciscans don't cancel outdoor 49er games on rainy days.

I think we should all boycott these businesses because they clearly don't care about us.

So now, I'm left with a dilemma. I can go to the next one in my area, but risk getting it only 8 days before chemo - or chance not getting the shot at all.

If I wasn't a school employee, I'd have skipped it. But at some point I'm going back to work, and it'll probably be at the height of the flu season and teachers don't seem to go home sick - they just come in my office and cough on me. So, I picked November 24, although it's listed as open to anybody, and I knew the lines would be huge.

Today is the 24th and I got back not long ago. And, because I work for the government myself, and feel kinda tired now, I'll relate my vaccination experience later, when I feel like it.

How is that for efficient?

By the way, we got a whole 1/10th of an inch of rain the weekend they canceled the clinic, so it was clearly the right decision. My husband and I bucked the danger and went out to brunch. We are super-adventurous types. Amazingly, neither of us slipped.

Or even got our hair wet.




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Life without cleavage

Did you know that if you drop popcorn down your blouse after mastectomy, there is nothing there to stop its descent, and you have to reach down to your belly button to dig it out?

Maybe I should skip the movies for a while.


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First Tissue Expander Fill

I had an appointment with my plastic surgeon to get my first "fill.' This is a process that will go on for about a year - every three weeks or so, he will inject the tissue expander under my mastectomy site with saline. This will stretch the skin and muscle enough to allow for an implant.

If you are anything like me, you love to watch those surgery shows. I'm particularly fascinated with the ones where they separate conjoined twins. To make sure they have enough skin to cover the areas of separation after the surgery, they use the same type of tissue expander I have.

I'll never forget some sweet little babies joined at the head who had one of these things - at the end of their expansion it looked they had three heads.

That's what my breastical area will end up looking like - a big baby head. They have to over-expand it to try and get a sagging match on the other side. For a time, I'll have a baby head on the right and a small, saggy real breast on the left. Getting dressed is going to be fun.

Anyway, the procedure went smoothly. He took out a device, I think it's a magnet of some sort, to find the area in the tissue expander to insert the needle. I was concerned because no numbing agent is used and there are random spots on my skin where I have sensation - fortunately, the opening is not under one of those spots.

He asked me if I wanted to be conservative or go for broke - I said broke. The needle went in and they started pumping in the saline.

It was like a mission control countdown. The nurse was urgently calling out, "10 cc's." "20 cc's." "30 cc's" The doctor put my hand on my skin so I could feel it rise with each cc. I could feel the muscle and skin get tighter and tighter and about 80ccs I could feel tension in my arm, so that is where we stopped.

The nurse told me that night I would feel like I had done 200 push-ups.

I can't relate.

The doctor stated that sometimes people go up to 200 cc's their first fill. I guess that means I didn't do very well. I'm a TE expansion failure. However, asking around on the breast cancer forums, nobody has gotten that much so maybe his regular clientele are the type of women who can relate to what it feels like to do 200 push-ups.

I'm the kind who can relate to the after-effects of a big shopping trip and carrying an armload of clothing. Ouch!

I experienced almost no pain that night - slight soreness and my usual muscle weakness. Next time, I'll ignore the arm stretching and try for 100 cc's.

Now, please excuse me. I'm off to get one of my son's super strong magnets to see if I can find this injection area myself and stick a magnet to me.

Ann, the walking refrigerator.

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Quick note

Now that Christmas shopping season is right around the corner, I wanted to point something out to you.

Look over to the right -------------------------->

See that Amazon box right there? If you are going to buy anything from Amazon this holiday season - or anytime actually - and you use that search to find your item, I get 4% of the proceeds. It helps me, and doesn't hurt you. I can see what items are purchased but cannot see who bought them. So, if you have an embarrassing love for Pork Feet, your secret is safe with me.

Better yet, buy a kindle. You'll love it, I promise.


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Get your mammograms, and feel yourself up

Originally, I set up this blog as a way to keep my family and friends in the loop about my treatment. I dislike talking on the phone and the thought of making and answering numerous phone calls giving the same details repeatedly seemed like one of the more unpleasant side effects of cancer. A blog is a clean and simple way for people to get the information they want - without bugging me or interrupting my nap.

Guess I'm not a people person.

It appears that more than my personal acquaintances have found this blog. It's gratifying to know that I have regular readers who like my writing and/or are interested in hearing about my experience with cancer. More than just letting family and friends know I'm alive, I hope it helps other women who are coming to terms with their diagnosis to know that you can get through it with your self intact.

Well, mostly intact anyway.

Although I have strong opinions about certain subjects, I never intended this blog to get political, and since I don't intend to live in Cancer World forever, you won't see me going on pink walks or urging people to raise money for breast cancer. (My favorite charity is still the Make-a-Wish Foundation.) I'm certainly not going to make the rest of my life about this disease. When I'm done with treatment, this blog will be done too.

Unless somebody pays me. Then all bets are off.

So, I was thinking I would ignore the news about the government recommendation that women not get mammograms until age 50, and oh, by the way, self-exams do no good.

But, then I realized I did have something to say about this.

Dear Government Advisory Board: What the FUCK are you thinking?

Excuse my French. Or, perhaps that's what they are thinking? They are urging women to surrender, like the French.

I am 51. I found my lump one month after turning 51. Guesstimates are this cancer has been growing in me for 8 years or so. Had I gotten my mammograms, as my insurance company kept nagging me to do, it's possible I would have found this in my 40s. It's possible I wouldn't have needed mastectomy or chemotherapy either. I might have gotten away with a lumpectomy, a month of radiation, and then gone about my life, boobs intact, and never having had the experience of shopping for a wig.

I have 7 years of treatment ahead of me. At what I can only guess is considerable cost to my insurance company.

My choice not to get mammograms was my own. I made my bed, and I'm lying in it, and not very comfortably after tissue expander placement, I might add. I had my reasons, and I don't regret it. However, not having mammograms was MY CHOICE. If that choice is taken away from millions of women and they cannot get mammograms, many will find their cancers at a later date, causing a situation such as I'm experiencing. Or worse. Much worse. Many will already have metastatic disease, and will die.

Mammography is not perfect. I have dense breasts - the test doesn't work that well for dense breasts. After my main cancerous lump became large and I had my mammogram, it did see that lump. It saw none of the other tumors lurking around. It's possible that had I gone in my 40s, my mammogram would have shown nothing. I recognize that fact.

But the opportunity should be there. In fact, my recommendation, which would be far too sensible for any government bureaucrat to make, would be to give women with dense breasts a sonogram in addition to their mammogram - 100% of the time.

The argument that women suffer from frightening experiences with mammograms, or suffer needless biopsies that cause them extreme stress and therefore these tests should not be done is incredibly insulting. It harkens back to the Victorian age. Women are strong enough to take a little pinprick, I promise you. If we can get our breasts cut off, lose our hair, have radiation to our bodies, have poisons pumped through us for months at a time, while raising children and going to work - AND do it with the grace and humor I have seen displayed by my new cancer buddies - then they can handle a squished breast and a needle removing some tissue.

Women are not delicate little flowers that require smelling salts if somebody speaks, um, French.

So, what is the purpose of these new guidelines? A skeptic might say this is the beginning of Obamacare and government-rationed health care. Leave it to the government to try to save a little and end up costing a lot. These are the people who run FEMA and the IRS after all - they are not going to do what is best for you or the bottom line. They are going to do whatever the special-interest group that pays for their latest Hawaiian trip wants.

Been able to get your H1N1 flu shot from your doctor yet? Hmmmm??

This advisory group also based their recommendation on old technology - not the new digital mammography. How quaint and government-like. Can you say mainframe, anybody? Cobol? I thought you could. Sensible people would recommend that digital mammography would be the way to go, not that women shouldn't get any mammograms.

My understanding from a friend who lives in the UK, is these are the same guidelines that exist in Europe - where the death rate of breast cancer is much higher than here in the US.

I am sure these guidelines will not be followed - not as long as we have private insurance anyway. Insurance companies will reject them as it is far more costly to treat invasive and/or metastatic cancers than early cancers.

But, if this recommendation is ever implemented - listen up. I have a work-around. The recommendation is that if you are under 50, you should discuss the need for mammography with your physician, and then he can set up the test against the new guidelines, if he thinks you will benefit.

I recommend you woman all lie and say you have a sister or mother who has had breast cancer. That immediately puts you in a risk group, and you'll get your test.

If you need a sister/mom stand in to vouch for your honesty, I volunteer.

I have no problems lying to the government. Except on my tax return, of course. I'd never lie on that.

So ladies. Feel yourself up, early and often. Get your mammograms. And, if you have dense breasts and have been told that mammography doesn't work well for you, as I was told - then insist on a sonogram. Make a scene until you get one. Lie if you have to. I had no idea until I had a lump that breasts could be sonogrammed to find cancer, or who knows, I might not be a uniboober right now.

Now excuse me, I'm going to go practice my French.


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Meet my boob

Or, in breast cancer vernacular, my "foob."

At some point after surgery, you are going to have to leave your house, even if you are lazy as hell, like me. If nothing else, you'll have lots and lots of doctor's appointments, so you'll really have no choice.

I'm pretty sure doctors don't make housecalls any longer.

Making a public appearance presents a dilemma for those of us who are rocking the uniboob look. The women who had a double mastectomy can just walk around and pretend they've always been flat-chested. Somebody is an A-, right? But, we uniboobers don't have that luxury.

So, what to do?

I didn't want to get a real prosthesis, because eventually I will have a reconstructed breast. I figured the old sock trick would work, but socks are scratchy and don't feel good against mastectomy scars. Cotton balls keep falling out. Fortunately, I was given a mastectomy camisole. Within that mastectomy camisole came some padding inside a pocket in the top. The camisole didn't provide enough support for my good side to wear regularly, so I decided just to pull the padding out and see if it'd work in a regular, unpocketed bra.

The padding, now known officially as my foob, fortuitously came with an opening in the back. You can pull the stuffing right out of it, to make it match your other side. And, as you go through the fill process, you can pull more and more stuffing out to get the best match. Not only that, but if you turn it right side up, you get a perky boob. If you turn it upside down, you get a saggier boob.

I'll leave you to guess which way I turn it.

As I mentioned in my post about post-mastectomy purchase recommendations, I bought some Spanx Bra-lleluja all-hosiery bras. No, these bra-lleluja's are not lacy little confections that peek out under your clothing, making any man who catches a glimpse lose his mind with the desire to see what else is under there.

Trust me, he'd be sorely disappointed if he did see what else is under there.

Although, I have heard of amputation fetishes, so maybe you'd get lucky enough to find that guy.

What these bras are is super comfortable on scars, on nerve-damaged skin and easy on/easy off with no reaching around the back. And, they have a large cup area, for a foob. No chance of it falling out, even without a pocket.

It's working beautifully. I have a near perfect match. The only problem is sometimes it tends to ride up to the top of the bra and I get slightly uneven results, which I'm sure only I notice. And, if you see me and notice, please don't destroy my illusions. I've found wearing patterned shirts offsets some of the discordancy when creepage occurs.

Maybe a little clothing tape will fix it, I haven't tried that yet.

Meet my foob:



Oh wait, something is missing.



Yes, that is a skittle. We mastectomy patients are nothing if not resourceful.

I only wish I'd had some pepperoni for the areola. Maybe we'll have pizza tonight.


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Good-bye, Fudge

My dog of 13 years passed away today.



He was the friendliest dog you'd ever want to meet. The entire neighborhood knew his smiling face. He never met a person or dog he didn't like and walks were always an opportunity to meet new friends. In fact, one day he was so excited to see some doggy friends walking with their owner outside our home, that he blew right through our screen door to get to them. The poor lady nearly had a heart attack to see this huge, 125 pound dog knocking down a door and charging at her, but when he got to her, tail wagging, tongue hanging out, and started sniffing her Pomeranians, she realized he wasn't going to eat them, but wanted to play.

We put in a security screen door after that, of course.

He was a big 'ol Chocolate Lab, named after the character "Fudge" in the Judy Blume book Tales of a Fourth Grade Nothing. Thirteen years ago I was pregnant, and my oldest son wanted to name his impending baby brother Fudge, like the naughty little brother Fudge in the book. Unsurprisingly, I vetoed that name for my child, but when Christmas morning came around and my son was presented with a wiggling brown puppy in a box, Fudge was the natural choice for his name.

Fudge was a remarkable puppy in that not once - not as a puppy and not as an elderly dog - did he ever mess in the house. We got him as a six week old pup and he came house-trained. I am guessing that will never happen again in my lifetime. He wasn't perfect - he was a Labrador after all. We still have some holes in the drywall where he'd decided to have a little snack.

His most notable trait was friendliness. Fudge never met a human he didn't love. Taking him to the vet today for the final time was no problem; the vet is full of fun people and even though he'd lost his ability to walk he was happy to be there with his friends. He licked them all good-bye.

Even in pain, at the end, his tail would thump when we'd come near.

Good-bye to our loving, comical, friendly, big ol' boy. We will always remember you.

You'll always be rolling in the grass, scratching your back, in my dreams.

Surgical Follow-up

Today was my follow-up appointment with Rockstar Raja.

He entered the exam room beaming, and said I looked good. I told him, "I feel good!" And, I do. He asked how my pain control was, and I said that I'd had a rough go at first but was doing fine now, except it's still hard to sleep. He nodded - the expander can cause long-term discomfort.

Then he said, "I got your pathology report," and I'd told him I'd seen it too.

He picked up the diagnosis page and fluttered it at me. "You did? Did you see this? Did you see how long this page was?" I smiled and said yes (without mentioning I'd typed it for my blog readership.) He, like Dr. Blair, was amazed that I had as much cancer as I'd had with no vascular or lymph invasion.

I'm so special.

He did warn me that the invasive lobular carcinoma was not like the invasive ductal carcinoma - it usually shows up in both breasts. Nothing had shown up in my left breast at the MRI but from now on I have to keep a very close watch on my remaining girl, and will have regular MRI's so they can see what I can't feel.

Good thing MRI's don't bother me.

Wait.

I had invasive lobular carcinoma too? Somehow that fact escaped me. So I had invasive ductal carcinoma, invasive lobular carcinoma, ductal carcinoma in situ, lobular carcinoma in situ and atypical hyperplasia.

That's not cancer soup, that's cancer stew!

One of the breast cancer forums I participate on has separate sections for the various kind of breast cancer you can get. I have such freedom - I can post in almost all of them.

Dr. Raja left the room so I could undress for the wound check. I did so hastily because I like to snoop through the paperwork before the doctor comes back. As I was undressing, I looked out the window and realized that everybody in the parking lot and the apartment complex across the way could see me. I felt sad for them, because a few months ago they would have gotten a treat and now, not so much.

Anyway, I quickly opened the folder of my chart to take a peek. (I know it's mine but it still feels more fun to sneak through it). I wanted to see what else was in there that I didn't know about - a friend of mine gets all kinds of compliments on her personality in her paperwork - but it was like 100 pages, so I only got to one before he came in. It was boring too, a letter from a radiologist saying that surgical follow up was required, and thanking him for allowing them to do the test.

He came back in, and I opened my fabulous paper top, and he said my wound looks good. There is a caveat to that statement - it looks good to a surgeon. I am pretty sure it would look horrifying to anybody reading this, and I can't say I'm exactly in love with it myself.

Anyway, I have some weird folding stuff near the armpit I was concerned about - it's preventing me from using my arm properly. He said it was normal though, they take out breast tissue up there too, and my plastic surgeon can fix it.

He said that I would see him in six months, and so I said good-bye to Rockstar Raja.

Phase One of my treatment - finished.

I also had a dentist appointment for today to get my new veneers, but it was canceled. They have to do more extensive work than I thought, including numbing me up. Because my tongue is still numb from the last time, I wasn't exactly keen on that idea (I said hell no), so they are going to drug me again. Now the appointment is next week.

Only three appointments this week? Think again. My cat is sick. So, we are taking her to the vet later today.

I hope she doesn't have cancer.


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Oncology Appointment

The technical term for what was contained in my pathology report, according to my oncologist, is:

"Your breast was a mess."

I guess I'll need to get my medical dictionary out for that one.

He said he'd never seen anybody with my pathology who didn't have lymph node or vascular invasion before, and that I'd gotten very, very lucky. "Somebody is looking out for you, that's for sure."

No dictionary needed for that one. I really should go play the lottery.

My chemo regimen is going to be grueling. It's TCH: Taxotere, Carboplatin and Herceptin. I'll have six rounds, every three weeks, of Taxotere and Carboplatin. Every week for an entire year, I go in for Herceptin. Then, I'm semi-free; I'll take Tamoxifen every day for five years. That though, is a pill I can take at home.

Wow. I'll be treating this cancer for seven years.

Dr. Blair gave me the choice of starting before Thanksgiving or after. I chose after - my stepdaughter is coming to cook for us, and I don't want to be in bed - I want to eat turkey with my family. So, my first chemo infusion is December 2nd, first herceptin is December 9th, 2nd herceptin is December 16, and the 2nd chemo is December 23rd.

(Note to self: start shopping now and forget the after thanksgiving deals.)

(Note to family: it may be a meager gift year. Consider my continued breathing as your main gift.)

I'll lose my hair about ten days after my first infusion, so warm hats for Christmas is a gift idea I never would have suggested before. :)

During chemo, I'll be taking a steroid to prevent fluid retention, and compazine and ativan for nausea, and possibly neulasta to get my white count up. Any other side effects that pop up will be dealt with at the time.

My main concern, which I brought up but wasn't really addressed to my satisfaction, is what happens if I get migraines because of these medications? If it happens in the infusion room, they'll give me demerol. But, if it's something that happens after, I got the distinct impression that I'm on my own.

I don't think I can possibly get across to these medical professionals how much these migraines have affected my life. The only ones who understand it are neurologists.

Maybe I can get a neurologist to treat me for the side effects of chemotherapy?

I can live with nerve pain. I can life with fatigue. I can live with bone pain. I can live with nausea, diarrhea, bloating. I can live with hair loss. What I can't live with is migraines -- not a year's worth.

How to describe it to somebody who hasn't had one? It'd be like giving birth every day of your life. And, not an easy childbirth either. For you men, it'd be like having somebody kick you in the balls every hour - forever.

Let's just hope that I'm not one of the people who get week-long headaches from herceptin. Maybe I shouldn't get ahead of myself. Maybe my cancer luck will hold.

Because of my focus on migraines, I completely forgot to ask Dr. Blair about getting a port. I think having a port surgically implanted is pretty standard for people who have to have a year of infusions. I'd rather not - it's ugly and leaves a scar that you can't hide, but I have small veins and since mastectomy they can only use one arm for sticks. An IV in one small-veined arm every week for a year might be a challenge.

I guess this will ruin my chances of ever being an IV drug user too.

Darn. Cancer takes away so much.


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Surgical Pathology Report

I've posted my other path reports, so I'll post this one too; what the heck. If you are a future employer, and don't hire me because of this, I'm suing you and you are a bad, bad person, and wrong too - because I will live a long time and I'm under my husband's insurance so I won't be costing you any money, and my real name isn't Ann Silberman anyway.

So there.

Okay, it's five pages so I'm not going to type it all. I'll skip the part where they described my poor separated breast, sitting in a metal bowl, nipple looking up at them for the final time, proudly. I felt a little sad thinking about my breast there in that bowl all alone and missing me, but the medical stuff got me so interested I forgot about it quickly.

Besides, it didn't take them long to chop it up. Murderers.

Here is the "Diagnosis" Section on page 4. If you don't like medical terminology - skip this post. It will give me a nice typing workout though. My comments are in bold, although since they are in English, I'm guessing you figured that out.

Invasive Ductal Carcinoma, 3.4 cm, Grade 3 (3+2+3), comprising main tumor at inferior aspect of breast (approximately 6:00), with focal histological changes consistent with prior biopsy. This is larger than they thought - sonograms are not accurate. The arithmetic problem above is how abnormal the cells were. Mine were just about as abnormal as it gets, which means they grow faster.

Multifocal invasive ductal Carcinoma, including two additional separate foci of Grade 3 invasive ductal carcinoma, including 0.2 cm focus at 4:00 biopsy site and including 0.1 cm focus at gritty area of lower inner quadrant between main tumor and 4:00 biopsy site, each associated with intraductal carcinoma. There is more than one invasive tumor. The big one had babies!

No Blood Vessel or lymphatic vessel invasion identified. Yay! It appears to have stayed in the breast. My cancer is a homebody, like me.

Associated intraductal carcinoma, Grade 2-3 solid, comedo carcinoma, and focal cribriform types with extension into lobules, comprising 30% of main tumor. That stuff was tunneling through my breasts like gophers

Separate biopsy site, lower inner quadrent (approximately 4:00, showing grade 2-3 intraductal carcinoma, solid, cribriform, and comodo carcinoma types with extension into lobules, 1.6 cm, and associated biopsy cavity Remember when I said I had cancer soup? These are the ingredients

Second separate biopsy site, showing lobular carcinoma in situ (approximately 3:00), with associated biopsy cavity More ingredients

Additional larger zone of grade 2-3 intraductal carcinoma, 4.5 cm, including solid and comedo carcinoma patterns, grossly indentified as gritty zone in lower inner quadrent connected to main tumor mass Oops, a big chuck of meat in the soup

No invasive carcinoma is noted at soft tissue margins (within 3mm of closet, anterior margin) Excellent, that means no radiation

No intraductal carcinoma indentified at margins, although intraductal carcinoma is noted very close to deep margin (within 0.5 cm, and somewhat close to anterior soft tissue margin (within 1 mm) Oh damn, that probably means radiation

Random section from lower inner quadrent shows 0.4 cm focus of solid grade 2 intraductal carcinoma and 1.3 cm focus of lobular carcinoma in situ. Damn, this cancer sprouted like mushrooms in my breast

Nipple shows atypical ductal hyperplasia of subareolar ducts Bad cells even in the nipple?

Benign overlying skin. All that tanning paid off

Tumor Staging: T2, pNO(-1), MX
Main tumor under 5 cms, no node involvement, can't tell if there is metastatic involvement

That likely means I'm Stage II. I'll probably be alive in five years.

Sorry to those who are disappointed by that. (Not really)


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What to buy for the Mastectomy Patient

As much as I hate to be practical - and oh, I really, really do - I thought I'd do a sarcasm-free blog post. People are always asking what to give their loved one who is having a mastectomy.

So, I have listed the items I found invaluable. (This will come in handy if you are looking for yourself, too.)

In the interests of full disclosure - if you click the links in this page and buy any of these items I recommended, I get 4% in referral fees.

Hey, don't fault me, I have cancer, and I'm not working.

• Neck donut pillow. Whether she'll have expanders or not, she'll have to sleep sitting up for a bit. No matter how well she props herself up, that neck just seems to get strained, and this donut pillow will help. When she doesn't need it for her neck anymore, (I'm 17 days post-surgery and I still do) she can use it to prop her arm, especially if she'd had a sentinal node biopsy or axillary dissection. One day I wrapped it around my side so my arm wouldn't rest against the axillary incisions.
  
• General pillows, and lots of them, including a wedge one for stomach sleepers. (She can't really sleep on her stomach - give that one up -  but eventually she'll want to support yourself in way that is not on her back - a wedge can help.)  The first few days, she can barely move.  She'll need pillows for under her knees, for her back, small ones for her armpit and back - oh, just pillows, pillows everywhere! Any place she needs to be, she'll need pillows.  You can't have too many.
  
  
Here is a resource for breast cancer patients to get a free heart shaped pillow: www.fillaheart.org.  They do good work. 

• iPhone/iTouch (or MP3 player)  Okay, I realize an iPhone isn't a "run to the store and grab it" item.  But, it was essential for me. In the hospital I put in my headphones listened to my "Ambiance" app - I chose the Pacific Ocean, which drowned out the hospital noises, (including my roommates 24/7 Home Shopping addiction) and soothed me enough so I could sleep.   I had rented a movie through iTunes to watch.  I could email and facebook and surf the net without lifting anything heavy.  Oh, and it's a phone, so I could call people.  With the kindle app, I could read a book.   If you are bringing it to the hospital, buy an extra charger as the cable won't be long enough to reach your bed.
  
If you don't have or want an iPhone, you can buy an inexpensive MP3 player.  Listening to music or downloadable audiobooks can also be very relaxing.  I also have a Sansa player and it would work fine for those purposes.
• Lip Balm.  I'm not sure why - hospital air, medication or just not enough drinking  - but lips get dry
• Men's Wife Beater shirts.   You can step into them, they go over your bandages easily, and they are really handy for pinning drains to. And, who cares if you make holes?   I lived in mine for a week.
• Kindle.  Okay, this is another item you won't just grab and go.  But, if your mastectomy candidate has been thinking about getting one, now is the best time.  After surgery, and especially after reconstruction,, she can't do much but read or watch TV.  We all know how I feel about daytime TV, so I won't be recommending it.  With a kindle, you can read a book, download the next one in seconds, right from your pillow-laden bed.   I love mine.  I read three books the first two days. Took my mind off my discomfort and I never had to move.  And, if she will be having chemo - that's going to be a lot of time in infusion rooms, and in bed.  If she's having herceptin, that is a year of treatment.  It will get some use.
If a kindle isn't in the budget, a book might be welcome.  Keep it light, and no breast cancer books!   If she's a reader, she's read plenty about cancer.  Recovering from surgery is the time to take your mind off it for a bit.  I read Kathryn Stockett's, "The Help" and thought it was great.
• Food  She won't be able to lift anything for a while.  Months, if she had expanders placed.  So, casseroles (in aluminum containers) will come in very handy.  Glass is heavy, as I discovered. Who  knew?  Food is one of the things I appreciated most.  My husband is a great guy, but lord, that man can't cook and you can only eat so much hamburger helper before you wish the cancer had actually killed you.  Thank goodness for my coworkers who brought me real food.
• Thank you cards.  People will send flowers and little gifts. It's nice to have some cards right there so she can address them and mail them quickly.  I have some lovely ones.  Haven't mailed any yet though.  Maybe you should also offer to write them and mail them, if you have a well-intentioned but mail-phobic friend like me.
• Easy-on clothing.  After surgery there is more swelling than you might think.  Even my stomach was swollen and I'm not sure I want to know what they did to me to cause that.  You can't put jeans on, and you can't button them if you did.  PJs are great at home but you will have lots of doctors appointments and have to get dressed for them.   While pajamas are now common in the grocery store, I've yet to see anybody wearing them to the plastic surgeon's office.  I went to Nordstrom Rack and bought myself some Juicy Couture sweats.  I'd always wanted some, and I figured, now is the time. They are soft, comfortable and don't shrink in the wash.   Button/zip up shirts are the kind  you'll need - baggy enough to hide drains (and lack of breasts).
• Spanx Bra-llelujah All Hosiery Bra.  After the drains are out, after the bandages are off, before any reconstruction begins she'll need a soft bra, especially if she had a single mastectomy like me.  I found that Spanx Bra-lleluja is exactly what the doctor ordered.  I get support for my remaining side, I can pad the empty side, there are no closures so no reaching around - it's stretchy so you can step into it. It's not binding anywhere so it won't cause any discomfort on broken nerve endings.  They also have enough flexibility so they can be worn during size changes during reconstruction.  They should market these things to mastectomy patients, you hear me Sarah?

Other suggestions:  Medication bottles need to be the non child-proof variety.  I still can't open bottles almost 3 weeks out.   You don't want to hand your young child your vicodin bottle and say, "Can you open this for Mommy?" so make sure you get easy-open ones.   All those pillows I talked about?  You'll need one in the car for the ride home.  Ouch! 

I hope this helps.  A nice gift for somebody you are not close enough to buy a bra for, or if you aren't rich enough to buy a kindle for would be a little gift basket of snacks, a book, some lip balm, some wet wipes, (many doctors do not let you shower with drains in) and some dry shampoo, in case she can't wash her hair.  Bring a chick flick DVD, a casserole and watch a movie with your friend.

Of course, the best gift you can give - is you.

Now, start shopping!


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