Ship's Blog: July, 2006

It is day 11 in chemo cycle #3. Day 11 is the day when I do ambitious things, like clean house or build something. Today, the goal was world domination through window treatments.

You see, we ordered shades for three of our windows a while ago. One is for my office window. The other two are for the kitchen windows which, in summer, get a nasty angle of evening sun that blinds me while I cook. We had nothing covering these windows, so we ordered honeycomb shades.  Read more »

Today the gardeners for the bi-monthly maintenance. We don't have much landscaping, so they just trim things back and keep our yard from embarrassing the neighbors. It's pretty simple, which is a good thing, because Mr. Le and I have a little bit of a language barrier. I do a lot of hand signals when I talk to him.

Well, when I heard them arrive today, I was melded to the loveseat, hairless, wearing my yoga pants that are covered in cat hair. I realized I needed to talk to the gardener, so I leapt up, ran to the bathroom, changed into jeans, and put some hair on.  Read more »

I went to see Dead Man's Chest today, even though I was really too sick to go out. I was shaky and weak and had pains running up and down my back and legs. Such is the week after chemotherapy! While trying to watch the movie, my concentration would fade then surge, and I was so tired that I couldn't sit up straight in the theater seat. In short, it was torture sitting through a two-and-a-half hour movie.

After I got home, a friend called me up and asked how the movie was. I confessed that I couldn't really enjoy it under the circumstances. She asked, "Well, why didn't you leave?"

I spent what seemed like an eternity with my mouth open, then said, "You do NOT walk out on Pirates. Not ever!"  Read more »

Kathy's shadow box from our class looks fabulous.

Today, she just needed to glue on the CO2 cannister and paint the background. I offered to do the black base coat on the background before she did the interference colors because...well, I like to paint things black. I really, really do.  Read more »

I crack myself up. Today I stepped out of the shower, dried off, then wrapped the towel around my head.

Um...Alix? Did you forget you have no hair?!?

The day isn't going as I had planned. I am just so very tired, not to mention nauseated. I get worn out just slouching on the couch. I know I'm anemic, but I don't think I'm that anemic. This cycle all the side effects have started early, with thrush and diarrhea starting the day after the infusion. I had to cancel my appointments today as I knew I couldn't drive. However, I do need to manage to get to the post office today, no matter how I feel.  Read more »

I just received my first statement from UCSF for chemotherapy. It turns out that the Taxotere alone is…steel yourself…$16,596 a dose! The other drug I get, Cytoxan, is only $308. Mon dieu!

It makes you wonder…does anyone tell cancer patients what chemotherapy will cost them when they are choosing between different regimens? Depending on your insurance, I can see that you might make different choices if thousands of dollars were at stake. But somehow I don't think anyone is having this discussion before choices are made.

 I'm finally ready to share what my pirate shadow box has become. This is the one I started in the shadow box class with Tim Holtz . Check it out:

Here are the side views:  Read more »

I forgot to mention, when I came home from chemo, I decided to look up the drug they injected into my tummy for anemia. I knew about ProCrit, but not this one-Arinesp. I was skimming down the list of side effects when it ended abruptly with: death.

Uh...does, um, anyone want to explain that in more detail? As in, who dies? What percentage of patients die? What are the factors that might make you die from taking this drug? Spontaneous death? Slow-and-agonizing death? Aurgh!

And why did no one mention this to me? Shudder!

Yesterday's chemotherapy infusion outfit featured lavender hair, big purple glasses, and an "I love Unicorns" T-shirt made from a vintage iron-on transfer. I named this outfit "Becky." If it wouldn't have been too much trouble, I would have added roller skates that I could sling over my shoulder, but dragging around a big cooler is bad enough!

This time I saw my oncologist. Last time I saw her nurse practitioner and since she didn't have my file, she had to take notes on a separate piece of paper. Of course, that paper didn't make its way back into the file, so I had to give my oncologist a recap of the side effects from the first two infusions.  Read more »

While installing applications on a new computer, I needed to make sure everything worked okay. So I opened up an old file that uses the application. It turned out to be my January 1995 journal where I had written about finding the lump in my breast that turned out to be a fibroedenoma.

I didn't remember this, but at the time I wrote,

"I think this is a warning of sorts, that I should really think about breast cancer and be aware of how I would deal with it if it did happen. Not that you ever know how you will react, but you can do some sorts of mental preparation. I really think it will happen to either my sister or to me in our lifetimes, and I don't think that's a morbid thought; it's just the way it is."  Read more »

It's funny the things people say to you when they find out that you've been diagnosed with cancer. Since my own diagnosis, a few people have said things to me that make me want to stand there with my mouth open, but my sense of composure is too great to allow for that. I can only think that people don't know how it feels to hear those things. Perhaps I'm naïve, but I think if they understood, they wouldn't say them.

I thought I'd share some of these comments with you. Now, I didn't hear all of these myself, but from swapping stories with other cancer patients, I know how common the rest are. My own commentary follows.

"Don't worry! Nowadays, breast cancer is no big deal."  Read more »

Today's mail contained a surprise for me. I was busily opening envelopes when a series of photographs fell out of one. I picked them up and looked at them curiously. They were the kind of images I buy on eBay - women arm-in-arm, friendly expressions with a bit of a secret shared on the edges - but I didn't remember buying them. I rushed to my computer to check my recent eBay wins - was I that forgetful from chemo? No, these were some from something else.  Read more »

Our British term of the day:

Bobby Dazzler

I heard it on Bargain Hunt this weekend. David Dickinson was commenting on a sparkly ring that one contestant purchased and said, "That's a real bobby dazzler!" My ears pricked up immediately—there's a word I must use!

The Oxford English Dictionary traces the use of bobby-dazzler back to 1891. A quick web search (and David's use) indicate it refers to something striking or excellent.

Your challenge: to use "bobby dazzler" in a sentence today. Make your language sparkle!  Read more »

After yesterday's shadowbox class, one of the other students (who has been in many classes that I've taken over the past several years) walked up to me. She looked at my pink hair and said, in a flat voice, "Didn't your hair used to be BLACK?"

Startled, I said, "Well, it used to be dark, but I'm going through chemotherapy now and so I'm playing with different wigs since that I don't have any hair."

"Oh," she said, then immediately turned on her heel and walked away.

It was the strangest response! All I could think was, "Um…okay."  Read more »

Today, Kathy and I took a class from Tim Holtz. We signed up just yesterday, without knowing much about the class. All I knew was that a shadowbox and a skeleton was involved, and I thought, "I'm there!"  Read more »

Today, Kathy and I stopped by a garage sale at our friend Sue's house. Sue Astroth is an author who works at our favorite shop that sells all the artsy-craftsy bits that we use. Today was our first visit to her house, so she took a break from selling to give us a tour of her art studio.

Oh. My. God.  Read more »

I learned a valuable Life Lesson today, one which you may already know. But just in case you DON'T know, I'm going to share it here. It's that important.

Never, under any circumstances, put Junior Mints in your purse.

The scenario: An afternoon movie matinee at a theater that doesn't carry Junior Mints.

The crime: A swing by Walgreens to purchase contraband Junior mints on the way to the theater.

The error in judgment: Discreetly reaching into the purse in a darkened movie theater to open one end of the box, slip out some mints, then close the box again. LIKE IT EVER STAYS CLOSED!

Dun-dun-DUN!  Read more »

Yesterday I just couldn't bring myself to put on a wig. It had been so hot that day and I was tired of sweating under a wig. So I put on my "Cancer Sucks" ball cap and went out sans hair. I knew it was risky but, you know, it's 2006—people shave their head for fun nowadays. How bad can it be?

Kathy and I needed to go clothing shopping. We headed to a women's clothing store that we frequent often. The salespeople work on commission and normally they fall over themselves offering to help us. But this time, no one offered any assistance. The store had a number of sales associates milling the floor and very few customers, yet they gave us a wide berth as we moved through the store.  Read more »

I had a number of errands to run today, but first up, I wanted to go to a matinee of Dead Man's Chest. I wore Aqua Purple, my new fave wig. The guy taking the tickets thought my hair was really cool and that made me smile.

While watching the movie (mild spoilers ahead!) I realized that Jack's black spot, the one he's so desperate to be rid of because it marks him as a target of the Kracken, is a good corollary for cancer. I'm working hard to get rid of my black spot, too!  Read more »

Because the lavender wig that I received a month ago was too difficult to work with (it tangled when you looked at it and shed like a tree in late fall) I ordered a different lavender wig to use for my next chemo outfit. This is what it looks like:

It recently arrived and it is wonderful. The fiber is much better than the other one. It has a good weight, so it hangs well. That part is awesome, too. I tried it on with the big purple glasses and it's perfect. The unicorn T-shirt will just set it over the top. Ha!  Read more »

For various reasons, one place I never eat at is McDonald's restaurants. You can probably guess any number of reasons. I never have a weak moment where it seems appealing, either. Well, until now…when they started offering Dead Man's Chest pirate toys with Happy Meals.

Dun-da-dun-dun-DUN!

I like to imagine that I am strong and principled, but all that really means is that my price is often out of reach. However, all it took was a little licensing deal with Disney, and McD's has me trolling their locations every couple of days to see who has the new stuff. It's embarrassing, yet even fear of discovery doesn't make me stop.  Read more »

Today I wasn't in the mood to wear a wig and decided to try something different. I took two silk scarves that I've had forever and tied them both on my head. Now, I'm more than a little "scarf-impaired," so I was lucky they managed to stay on--we won't even address whether or not the effect was attractive. Not that I think I fooled anyone; I was pretty positive I had the Cancer Girl look going on.  Read more »

This morning I recorded a 1/2 hour "behind the scenes" show on Dead Man's Chest, on Starz. This afternoon, I turned it on to watch. It started out, quite cornily, with the characters of Pintel and Ragetti (the wacky pirate duo) doing an opening schtick, bantering back and forth.

At one point Ragetti says he wants to be good and Pintel says something like, "Pirates are bad. Why would you ever want to be good?"

Like a little kid, I answered aloud, "So you can get ice cream!" Half a second later, Ragetti responded, "If you're good, you get dessert!"

Okay. That was…weird.

Pirates of the Caribbean: Dead Man's Chest, the movie I've been waiting for, is in the theaters. Yay!  Read more »

The other day I was shopping for the perfect ball cap for those no-hair days, when I'm puttering around the house and the doorbell rings, or I want to run out on an errand without putting a wig on. I found a fabulous "Cancer Sucks" cap at choosehope.com. I chose a green bill to set off my lovely bloodshot eyes.  Read more »

When you go through chemotherapy, there are a myriad of details that you need to keep track of - medications, times you take them, your temperature, side effects, numbers to call if anything goes wrong - you get the idea. A lot of people keep a daily log or journal of this information, sometimes writing about their personal experience as well. Now, you could go out and buy a notebook or a blank journal and use that, but I think it's more fun to decorate your own. Here's one way to do it.

I started with a 99-cent black-and-white composition book. You can use any plain notebook as long is the covers aren't plastic, because it's hard to get paint and glue to adhere to those.  Read more »

Uh-oh. I found the Scopolamine patch. It seems that somehow, Friday night, it slipped from behind my ear and made its way all the way to the center of my back. This means that I've had a double dose for at least 12 hours. That's worrisome because the patch has a number of side effects that are problematic, and the last thing I want to do is compound them.  Read more »

Yesterday was my second chemo infusion. Because my appointment with my oncologist's nurse practitioner was scheduled for 8:30 am (and I needed to get lab work done beforehand), Kathy and I had to leave the house at 6:30, ice chest in tow.  Read more »