Ship's Blog: October, 2006

This was the perfect day for my electric blue hair. I love the color of that wig. The wig itself is not high quality. If you compare the fibers to those on, say, my "Aqua Purple wig ," there is no contest; Aqua Purple has more fluidity, silkiness, and strength. With the electric blue wig, you don't want to comb it too much (read: at all) if you can help it.  Read more »

The radiation therapists keep sending me to the nurse after looking at my skin and frowning. It just keeps burning more and peeling off. I did not know that peeling skin could be so painful.

The interesting thing is that there are two women who are finishing radiation within a day of me and they do not have any burning or blistering. I don't think most people burn this much or this fast. (I'm sure some have it worse, so I am NOT COMPLAINING.)  Read more »

As the days grow shorter and a deep chill invades the night air, we enter the season of uninvited visitors. And no, I'm not talking about your mother-in-law from Tucson. I'm talking about rodents.  Read more »

On Monday, the radiation oncologist's nurse told me to start using Domeboro solution on my raw skin, three times a day. She gave me some samples to start me off, and that day I went to the pharmacy to try to get a box of packets. They said they'd have to order it and told me they'd call me later in the afternoon with an estimated arrival.

Tuesday, after hearing nothing, I called the pharmacy, but they transferred me and put me on hold for fifteen minutes. Finally, I hung up.  Read more »

I met with my radiation oncologist's nurse again today, so she could check out my peeling and oozing skin. (Sorry, I know that's gross!) She brought along two nurses to discuss what we should do.

The challenge is that I need to get air to all the moist burns as much as possible. That's fine for under my arm, but it's not easy to do under my breast. Any large breasted women reading this know what I mean. If you would have failed the pencil test at age 19 - or even the pencil box test - then you know what I mean.  Read more »

Do you remember those hidden image stereagram posters that they used to sell in mall kiosks? They looked like multicolored visual static-nothing distinct-but if you stared at one long enough, you'd see a three-dimensional image emerge after a while. Maybe it was an eagle or a landscape. I tend to think that the Universe sends us secret, encoded messages through our experiences in a similar way. If we unfocus our eyes and cock our heads to one side, we may just see something special that no one else can see. Sometimes these messages take us one step closer to our destiny.  Read more »

A friend of mine in Arizona called me up today. She asked if my hair was growing back. I said yes.

"What does it look like?" she wanted to know.

"Well, did you ever watch Dark Angel?" I asked.

"Sure!"

"Okay, I look like young Max, only...gone bad on the pastries."

It was a good laugh!

My skin has now started to peel off in the most painful way. People say, "it's like a sunburn, right?" I don't know, I never had a sunburn hurt this much when it peeled! My flesh is raw underneath, oozing, and I feel like a mutant.  Read more »

They told me radiation would make me tired. What I didn't expect is that I would just fall over asleep by 3 p.m. every day, and stay asleep for two hours! I have great ideas in my head about what I'd like to get done around the house but...well, nothin's happening, that's for sure!

The good thing is that this is very different from chemo fatigue. That fatigue (at least for me) was accompanied by the feeling that something was horribly wrong with my body. It was much more intense. At the same time, outside of the first two days after an infusion, I didn't sleep that much. I just couldn't lift myself off the couch. Totally different thing.  Read more »

My radiation burns are stinging like the dickens now. Whatever "dickens" are. Despite the three times a day skin treatment of Aloe Vera gel and Aquaphor, the skin continues to get worse.

Today, the radiation oncologist looked at my skin and decided to change the plan. She's decreasing the number of whole breast radiation sessions and doing three extra "boosts" to the tumor area. Her hope is that this will spare the skin under my breast and arm from some of the damage.  Read more »

Today the lead therapist looked at my breast as I was being positioned for radiation. She asked me, "What are you taking for that?"

Confused, I said, "Uh...nothing?" I mean, obviously my skin stings, but for some reason I never thought of actually taking anything for it.

"That's gotta hurt," she said sympathetically. "Try ibuprofen to bring down the swelling. If you normally take 4, take 6."

I'm pretty sure she meant that if I take 400 mg normally, take 600, but I really want to go in tomorrow and tell her I'm feeling great, especially after taking six Advil! Ha!

* * * * *  Read more »

When you go to radiation every day for a month or two, you start to get to know your fellow patients and exchange stories. The people I see each day have very interesting stories, only I usually only get to hear them in two-minute intervals, before one of us is called away. Damn that efficiency at Alta Bates!

One man has educated me, in snippets, on the treatment of early stage prostate cancer. I found it fascinating. Before this, I didn't know that now they can use radiation treatment in place of surgery. Usually the boys and girls don't talk across gender in the waiting room (don't ask me why; we have only about five or six chairs shoved together in a row!) but this gentleman is sociable.   Read more »

One day, when I was a teenager way back in 1981, a computer appeared on our dining room table. There was no warning and no explanation. I had never seen a home computer before.

When I looked closely, I saw that the green text on the monitor told me that I was in a meadow with a sleeping dragon and a sign. Obvious exits were south, east, and west. I asked my father what this was. He claimed he didn't know. I knew something was up, but I couldn't resist sliding into the chair. "Go west," I typed.  Read more »

While surrounded by a group of radiation therapists today, talking about my choice of hair color and the mixed-media art book I was reading, I realized something with a jolt. I've finally reached the age in life where all the things that made me an outcast as a child make me surprisingly cool.

Go figure!

Being cool changes as you get older, that's for sure. As a child or young adult, general consensus seems to be that cool involves excelling at whatever it is that makes people fit in. The more brightly you conform, the more popular others rank you.  Read more »

Since I started wearing my many wigs during chemotherapy, I've found myself giving little impromptu wig seminars for patients in waiting rooms, the infusion center, and online. Several people have suggested I write a guide for chemo patients who want to go wig shopping, so here it is.

The first thing to do is consider whether you even want to wear a wig during chemo. It's not required that you do - you can wear hats, turbans, scarves, or even go bare headed. Having met a few patients who found wigs cumbersome and uncomfortable, I know that they are not for everyone. If you are unsure, start with one wig and see how that feels for you before you invest in any more.  Read more »

When I saw my radiation oncologist today, she immediately told me that the pink hair was a big hit at the fundraising event. There was a young tennis pro at the event, and when the doctor checked in, this woman looked up at her (seeing the wig) and said, "Wow, you just went up 8 points on my hot list!" Hee, hee, hee. I can't wait to see a photo.

The oncologist evaluated how my skin is doing. She wanted me to step up my skin car. My scar under my arm, from the sentinel lymph node biopsy, is looking angry. I have a red stripe under my breast that needs attention.  Read more »

Today is session 18 of radiation therapy, which means I'm past the halfway point.

I gotta tell ya, I'm so over it. I'm going to offer a deal to the radiation therapists - we'll say "all done" and I promise to stand topless next to the microwave once a day for one month. Do you think they'll take me up on it?

Yeah, me neither.

I've been thinking lately about how important it is to have an advocate available when you receive a serious diagnosis like cancer. It's on my mind because my father's wife is going through treatment right now and I think she could really benefit from one.  Read more »

Happy birthday to me! Kathy and I had a birthday celebration today and she gave me cool presents. She bought the computer adventure Syberia for me (I'd be wanting to play that for a while) and she had boxed DVD sets of the Dead Like Me TV series. I really like that series; it's unfortunate that it was cancelled by Showtime. I've been catching re-runs on SciFi channel, but now I can binge on the show which will really be fun.  Read more »

Kathy and I went to see our hairstylist today. Since I didn't have any hair to trim yet (it's less than half an inch long) I brought some wigs along for styling. Jennifer was kind enough to trim up some blonde wigs, a couple of new cinnamon ones, the turquoise wig, and that burgundy curly wig that I wore this week. She showed me how to style the curls to make them less overwhelming, too.

I assume that at some point I will stop buying inexpensive wigs, but I don't think I'm done yet. After all, I don't have a crimson one or a green one or a short-and-sassy blonde one...there are many more possibilities out there.  Read more »

Today I had two oncologist appointments, which meant a lot of wig planning. I was pretty sure my medical oncologist would enjoy the blonde micro-braids, but my radiation oncologist had already seen that one. So, I wore another wig to radiation with the micro-braids in my bag for when I changed back into my clothes. I hand-carried my pink 60s wig, as my radiation oncologist had asked to borrow it for a breast cancer fundraiser that she's participating in. (She'll be playing tennis and they said all participants have to wear pink and white.) So, busy hair day!  Read more »

Today I wore a wig that I swore (after trying it once) I'd never wear. It is dark hair with deep magenta curls. I love the color (I've had my own hair dyed that color in the past) but the curls were a bit much. It looks cool on the mannequin head...

...but doesn't look quite so sexy if you have a neck that is shorter than 12 inches.

I wore it because I'm running out of "new wigs" to wear and I have no shame. I knew it looked ridiculous when I put it on. However, to walk with dignity no matter what weird thing has landed on your head is a skill that's worthy of learning.  Read more »

It is one thing to have your computer crash and eat your data after you've been "meaning to do a backup" yet haven't gotten around to it. It's quite another to crash and burn after a week of daily backups, only to find that all the backup files are corrupted.  Read more »

Busy, busy day. I've been all over Oakland, Berkeley, and San Francisco today for a variety of appointments and errands. It's good to be home.

At the radiation center, they were concerned because my skin is already showing a reaction to the radiation. Apparently, this is very early (day 11 of 33) for my skin to start freaking out. They gave me some Aquaphor to put on the spot that's sore, in an effort to stop the skin from breaking down.  Read more »

When most people see "assembly required," they shudder inwardly. When I see that, I get a little bit excited.

I know, it's kind of sick but...I like to assemble furniture. I take it as a challenge. I have assembled at least forty different furniture pieces, cabinets, or chairs in our home and given that we can't really afford pre-assembled masterpieces, that trend is probably going to continue. This week, I had my DIY eye on new kitchen chairs and a bathroom wall cabinet.  Read more »