Ship's Blog: June, 2006

1. Experiment with wacky wigs

As I like to demonstrate often, wigs worn for chemo don't have to match your real hair. You can go as wild as you like. Is there a hair color you've always wanted to try? Now's the time! Redhead, brunette, blonde, white, blue, or violet, the world of hair color (and style) is now open with you. Just be sure the wig is comfortable on a bare head.

There are hats and there are hats. I'm talking about color, large, ornamented hats. Jester caps. Easter Parade hats. Carmen Miranda hats. If you can't find 'em, you can always get something plain and tart it up. Just be sure to duck as you walk through low doorways.  Read more »

When Kathy went in for her last hair styling appointment, I asked her to cancel the appointment I made for today (to have my hair buzz cute) because I thought I was going to lose my hair before today. As it turned out, I was right. However, somehow the cancellation didn't get recorded, because on Saturday they called to confirm.

I decided that this was Margie & Norm's way of getting me an easy appointment to get my wigs styled, so I kept it. I filled a shopping bag with wigs and drove to San Francisco.  Read more »

Remember that nurse practitioner who diagnosed me with a condition I didn't think I had? I'd been trying all last week to get a hold of her about the results. She didn't answer my messages for a week and a half, because it turns out she was on vacation for part of that time. I asked that someone else give me the results, but the clinic refused to let anyone else do it. Grrrr.  Read more »

Skeeter, our big ginger tabby, had the strangest response to seeing me after I shaved my head. He sniffed my head suspiciously, then backed up, making this weird "WoooooOOOOOOooo" noise that I'd never heard from him before.

Boys!

My girls don't care. Tilly Bear just wants to knead on my chest and she's fine. I guess it's good for her that I was able kept my breasts.

It amazes me how many people respond to the news of cancer with questions that are clearly designed to determine why you got it. In the beginning, this confused me-why were so many people assuming I smoked or asking if I did? Why were people so curious about whether it runs in my family? What's with this interrogation about my diet?  Read more »

Except for the occasional interludes when I buckled under peer pressure, I've had long tresses for all of my adult life. My hairstyle bears a marked resemblance to the one I wore in sixth grade, at age eleven. Not because it's fashionable (I'm pretty sure it's not) but because I like it. It's shiny, healthy, rarely blow-dried hair, and when I woke up this morning, I knew it all had to come off. Today was just a waiting game until the time for me to take out the scissors and the electric trimmers and shear myself like a sheep.  Read more »

My scalp has been tight and hurting for a few days, a sign that my hair is ready to fall out. No book warned me about this precursor sensation; instead, I learned about it online, from other chemotherapy patients.

Today my hair started shedding at an alarming rate. Strands of long, long hair keep getting tangled up in my hairbrush and between my fingers. When I showered this morning, I had a mass of hair stuck to my breast. I had to pick it off, open the shower door, and toss it on the counter so that it wouldn't clog the shower drain. Ick.  Read more »

After ten days of extreme fatigue, yesterday my energy came back, and the various medicines I was prescribed started working. I wouldn't say I felt healthy, but energy can make up for a whole lot of things.

Of course, I wanted to make up for lost time, so I started cleaning immediately. I even pulled out the vacuum cleaner and started moving furniture in the living room, determined to transform the place before Kathy got home. It was sort of a, "Look, I'm all better!" attempt. This went fine until I moved a small round table with a thick marble top. The marble top lifted up as I moved it and then slammed back down on my finger.

OW!  Read more »

There are people on the breast cancer board who are posting, about their own chemotherapy, "I don't feel any different. Do you think they gave me enough? Is this really working?" They go to events after their chemo infusion, they work full-time without missing a beat, and nobody even knows they are doing chemo.

I really wanted to be one of these women.  Read more »

This morning, I had enough energy to have some breakfast in the kitchen and chat over coffee with Kathy about our day. That's a big deal when you've barely sat upright all week.

I was telling her that I wished I had a larger selection of vintage ephemera to use in my art. You know, little bits and pieces of things like old report cards, calling cards, or deeds of trust. Buying them on eBay is expensive because, when you're talking about little pieces, the shipping can cost more than the item.

Kathy said, "We should go out to garage sales and estate sales and find them ourselves."  Read more »

I have recently been taken over by a grand new idea. I love new ideas. They are intoxicating! My ideas tend to be very complex. They flesh out and grow within seconds of the initial inspiration. It's a busy, busy world inside my head.

Today's idea was that I want to create a fabric-based art book that's all about...STEWARDESSES! Not flight attendants, but the late 1960s/early 1970s women in mod uniforms whom we only knew as stewardesses.  Read more »

When you do chemotherapy at UCSF, you see someone in oncology on each infusion day, before the actual infusion happens. In these appointments, oncology checks your lab work to make sure you are okay to get the infusion, they see if they need to change medication, and they can potentially change the pharmaceutical orders for the infusion center, as needed. Everybody does this.

Now that I know I have to be at the infusion center by noon each cycle, I am able to make the oncology appointments for the remaining infusions. So today I called the Breast Care Center and spoke with a scheduler. I hadn't spoken with this one before; she sounded very young and, as the conversation went on, just a wee bit untrained. For example....  Read more »

For some reason, I've been hunting down retro-style fabric on the Internet today. I ended up finding a Michael Miller print on which I have an instantaneous, mad crush.

Take a look:

   Read more »

I was pulled in to UCSF today to have my blistery rash examined and to get IV fluids for dehydration (from the diarrhea). When I left the house, I dressed in a tank top and some light weight pants. I'm amazed I didn't rethink my choice, because that's fine for Concord but it's not so fine for San Francisco, where it is 10 to 30 degrees cooler on any given day!

On the drive over, I felt weird...warm, fussy, and faintly motion sick. I didn't know what to make of it, but honestly, I don't know what to make of anything while I'm doing chemo.  Read more »

I received a SPAM message in today's email entitled, "You can regrow your hair!"

Um, okay...good to know the universe has a sense of humor.

I'm really not feeling well. I feel very boring talking about my symptoms. I have a painful, blistering rash, I've had diarrhea for days, and any light hurts my eyes something awful. I am in the darkest room in the house with the brightness turned way down on the laptop. That goes to show how stubborn I am that I don't turn it off the computer altogether!  Read more »

In other news, it's a sad day at Lime Ridge. I heard a lot of mooing and went to look out my back window into the open space. All the cattle were corralled together, with ranchers circling them. Then a big trailer truck pulled up so the could start loading the cattle up to move them out. The cows are leaving! Oh, no! I couldn't watch and had to go back into the other room.

I'll miss my boys. Please, don't tell me where they are headed. I'd rather not know.

Today I had to call the pharmacy about the mouthwash I picked up for oral thrush. The bottle says to take 5 CCs and the accompanying instructions say to "use the provided medication dropper to carefully measure out the dose."

Of course, there is no dropper. I asked the pharmacist about this over the phone. He said he doesn't know why the instructions say that because they don't give droppers. Just measure the dose out yourself.

I asked, "But how much is 5 CCs?!?" Turns out it is a teaspoon. Did everyone know that except me? I'm imagining myself in the kitchen, making marinara sauce and shouting out to Kathy, "I need 5CCs of basil, STAT!"

All weekend, my sweet tabbies have been very serious about nursing me back to health. The only thing is that their rivalry gets in the way. If they could speak, the "conversation" on my lap would go something like this:

"Get off. I'm taking care of Mom."

"You are NOT. I'm taking care of Mom!"

"I AM!"

*Smack* *Smack*  (as they hit each other with their paws)

Voice of Mom: "Stop it! No one gets to be on my lap unless you play nice!"

Lola and Tilly leap off my lap at once, running just a little bit away so they can turn around and sulk. "She started it." "No, she did!" It never ends.

I woke up with a migraine this morning, feeling just awful. Then my face turned red and started puffing up while my eyes turned glassy. Alarmed, I called the on-call MD at the cancer center. He told me to take Benedryl and 1000 mg of Tylenol, because it seemed like a mild allergic reaction. As it turned out, it worked-go figure!

For the few days after each infusion, they have you take a series of anti-nausea meds. The idea is to stop nausea before it starts, if possible. What it means is that you end up having to take different medicines every few hours, all day long. I'm not sure which is making me queasier, the chemotherapy or looking at that pile of medicine bottles that I have to keep opening up. Ugh.  Read more »

Happy birthday, Johnny Depp!

Today was my first chemotherapy infusion, which meant that last night I had to start taking Decadron (dexamethasone). I know that a lot of people have trouble sleeping when they take a steroid like that, but my main side effect was vertigo. When I got up in the middle of the night, I almost fell against the wall from it. Very weird. I was still dizzy in the morning.

We packed the ice chest with the frozen mitts and slippers, along with zip bags full of ice. The hypothermia mitts only stay cold for 45 minutes and the infusion lasts longer than that, so my plan was to sandwich my hands and feet between bags of ice after that. Sounds cozy, doesn't it?  Read more »

As the day draws near for my first chemotherapy infusion, there are a variety of prescriptions that I must get filled.

One is a prescription for an injectable drug called Neulasta. They have commercials on TV and ads in magazines about Neulasta; it's this stuff that either prevents your white blood cell count from dropping too low during chemo OR it helps you recover from the dip faster. Because Taxotere is notable for causing a drop in white blood cell count 7 to 10 days after the infusion, many patients get the Neulasta injection the day after chemo to help them out. If you get your infusion on a Friday, like me, there is no one around to give you an injection, so you have to inject yourself.  Read more »

Three times out of five, if I tell someone that I was just diagnosed with cancer, they have someone for me to call, a website for me to check out, or an exercise program for me to try. A woman I'm working with insists I must call her colleague who healed herself using a special alternative therapy. A guy giving me a quote for work on the house insists I must visit a website before I start chemo, because I can heal myself with sunshine and a trust in God. Friends and acquaintances give me phone numbers for 'amazing nutritionists' or ask for my address to send me literature. I receive links to anti-cancer diets that I'm told I should start following right now.  Read more »

Can you really prepare for chemotherapy? After spending a couple of weeks reading up on the experiences of other women doing chemo (especially those who are taking the same drugs that I am) I honestly don't know. People respond so individually.

However, I've been making mental notes of things to do in an attempt to ward off some potential problems or get a handle on things sooner. It's a really strange list, full of personal hygiene items, which makes it perfect to share with people I don't know! (Ha!) After all, I'm talking to all of you about my breasts lately, who cares about weird personal care lists?

Anywhere, here are some of my intended guidelines to follow during chemo:  Read more »

I brought out heating and AC guys today to repair some duct work and take a look at our furnace/AC system. It seems almost impossible to cool the house off in the warm months (also known as BURNING HOT months here in Concord, CA) and in the winter, the living room is always freezing. I was hoping they'd tell us if we had leaks in our vents or something.  Read more »

I went to a birthday barbeque for my dad today. It was nice seeing everybody and getting a chance to talk to my brother's girlfriend. I also got to see my brother's kids. Despite the fact that he lives just a few blocks away from my sister, circumstance means that I don't get to see them as often as I see my sister's kids. The youngest is the spitting image of her mother and it amazes me every time!

At one point during the barbeque, my sister and her teenagers took me aside. All three of the kids had either bought or made cards for me and they wrote encouraging messages to me inside (regarding chemo). I was so touched by their thoughtfulness that I almost cried. What wonderful kids they are! I am very lucky to be their aunt.

As the date for my first chemotherapy infusion approaches, I've been doing as much research as possible on chemo side effects and what to do about them. One side effect that I particularly wanted to annoy is what they cleverly call "nail changes."

It turns out that a number of people who have Taxotere chemotherapy have their finger and toenails turn brown or black and sometimes...fall off! Oh my!  Read more »