Monday, March 24, 2008

Taxol is ZZZZZZZZ, Decadron is ZOW

Taxol infusion went okay today. With 50 mg of Benadryl in my IV drip, I conked out fast. Put in my ear plugs and put on my sleep mask and everything. Roland brought me poached chicken, a protein smoothie, and an orange for lunch.


I had a Coke from Hill Bert's and an order of the crunchy tacos.

Came home about 1:30 or so and I went back to bed for 2 more hours. That super rest, combined with the Decadron high (I had 20 mg at home, then another 20 more in the IV) has at this moment turned me into a housewife cyclone. I went for a 30 minute walk, assembled dinner, am now doing laundry. Yes, I just had chemo today. The only immediate problems? I will probably not have a good night's sleep tonight and will experience a crash from coming off the Decadron. Maybe I'll clean something with a pile of Q-Tips, then organize family photos. That ought to bring me down to earth again.

Sunday, March 23, 2008

Compliantly Going to My Doom

I am being a compliant patient and I took my 20 mg of Decadron this morning because Taxol starts tomorrow …

It is a corticosteroid. I have to take it because it shrinks tissues. The new cancer drug I'm going to start, Taxol, is effective but can cause allergic reactions in some people. Decadron is making me feel awful. Jittery, headache, joint pain, pain in my glands. I took an Ativan but it did not help these symptoms.

Post-AC symptoms include great hunger/small appetite and that ear wax taste in my mouth all the time. Inability to use my power toothbrush comfortably. I had this need to prove to people that I'm not lying alone in a dark room, coughing up blood into a handkerchief. So I stayed up too late during SXSW and I feel run down. Trying to rely less on prescription sleep aids when I'm not in a chemo week, so I take my GABA+ and melatonin. Sleep occurs in small fits and is punctuated with strange dreams.

For instance, I have a recurring dream about flying. I dream that the airplane doesn't have seats in rows, it's more like a flying theater-in-the-round sometimes. Well, I dreamed the airplane was a grocery store produce section, and our seats were in the middle of that. The seats were church pews (arranged in the round) with lap belts, although one lucky flyer got a seat to himself on a kind of bishop's chair on a small pedestal. Fresh fruits and veggies and church, flying, what does it mean??

I am dreading the infusion tomorrow, I don't know how I will get through it if I feel this raunchy now and they have not even gotten their hands on me yet with the new drugs, which includes a different anti-emetic this time, more steroids, Benadryl (which I hate), and Tagamet.

Monday, March 17, 2008

Lucky to Have Cancer

We saw an old friend during SXSW, someone whom I've not seen for many years and we had a chance to catch up. Unfortunately for him, he and his wife are splitting up. It's complicated, he is taking a lot of the blame, but mostly, he is just very sad and does not want his wife to go. All they see are their problems and their boredom with each other, nothing is binding them together anymore.

And so he told me that in spite of what's happening to me he thought Roland and I are lucky. I know exactly what he meant. He meant we have my illness, besides everything else that's in a marriage. That renews your bond in a relationship, makes you pay attention again, makes you take the other person a little less for granted than you did before. Our friend would like to have that again. I wish him the best, even if the best involves cancer. I really mean that.

Saturday, March 15, 2008

More Cancer Talk at SXSW

I don't know why we all go so undernourished during SXSW but it's a condition that a so-so breakfast taco at a day party will not solve. I need animal protein, and a cooked vegetable, now, and you vegetarians can keep your ChickN and raw foods to yourselves. It won't save you, no matter what you think.

My nutritionist says so.

I just now ran into C., the woman who was standing next to me last night at X. I found her interesting, supportive, fun, and gutsy. She said, "Do your homework, make your own treatment decisions, and don't look back."

As I mentioned, C. had a Stage III tumor with 6 lymph nodes involved. She's involved in a clinical trial with aromatase inhibitors and something else, instead of Tamoxifen. She also did dose-dense Taxotere instead of Taxol. C. stayed away from vitamins and anti-oxidants, quite the opposite protocol from the one I've been counseled to follow. Her doctor gave her no sleeping pills, etc. She warned me that her flipping fingernails fell off and that other breast cancer gals said they use tea tree oil on their nails to prevent that.

Fingernails! Something new to worry about!

As she said last night, the hair loss is the worst and I must agree. I have heard many times that your new, post-chemo hair can grow back a different texture or even a different color. I will not be that lucky. My hair will grow back stick straight and dirty blonde, I just know it. If I lose my fingernails, that will make most household tasks very hard (yay! more getting out of cooking) but typing will also be a bitch and if I can't sew, well, what is the point of getting up every day? God, I hate the smell of tea tree oil. Too close to patchouli.

I have to admit that I am not in the mood to soberly face the reality that menopause, induced by my treatments and the drugs I have to take after, is going to be a fact of my life at age 45. I'm really mad at myself for not being a better caretaker of my body before all this happened. I've never been as strong as I've wistfully imagined I was, I don't have the muscle tone I would like. I don't like exercise enough to have ever made it the priority in my life. Well, now I no longer have a chance to get ahead of the Menopause Middle Abdomen curve, everything I do now will barely be maintenance of what little strength, tone, and flexibility I have.

I guess it's easy to have regrets when you get an illness, easy to place blame and say, "Man, I should have." It's also easy to think doors that were always open when you were young are now closed. I do feel like I'm standing on the side of the door that's closed. I feel like I didn't do my life the right way and now I have cancer to do, instead. I wonder if this is true or if my SXSW exhaustion is kicking in.

Friday, March 14, 2008

Cancer Chicks at the X Show

Tonight's X show at the SXSW Live stage was quite transcendent, they were in top form. John Doe's and Exene's vocals were as good as ever, Billy Zoom was having his own show on Stage Right with his new Billy Zoom Tribute Model Gretsch guitar, and DJ Bonebrake was still the solid, creative rhythm of the band.

About 2/3 of the way through the show, between songs, a woman asked my bandanna-ed self, "Do you have breast cancer?"

Wow, no one has just said this to me before. "Why do you ask?" I said.

"Because I'm a survivor," she said. "Three years. Stage 3A. I was 37 when I was diagnosed."

We talked some after the show, I got her card (damn, why don't *I* have cards??) and we talked cancer.

A few moments later, outside on the street, another woman greeted me. I still don't know her name.


I could see her port, it's still in her chest, plainly visible. She had a halter dress on. Her hair was short, obviously still growing out. She was ebullient.

"I see your port," I told her.

"Feel my boobs!" she said. I did. They felt — and looked — pretty convincing. She said before, "the girls were sagging," and now with her post mastectomy breasts, they were perky.

That was 2 women in the X show, under 40, who've had breast cancer. Both strangers to me, both lifting me up and telling me, You are going to be all right, girl.

Wednesday, March 12, 2008

Out of the Gene Pool!


I was informed yesterday by phone that I do not test for either the BRCA 1 or 2 gene for cancer.

That is good news, as my risk for ovarian cancer is not high and my kid does not have a higher risk for cancer than the general population.

Last Thursday I got my last round of Big Red with Acetone. I have felt OK, not insanely great. Mostly, I am frustrated at meal time (stomach growls, but food offers no comfort or flavor) and wine tastes like nothing at all.

My SXSW week began immediately after this treatment, and I have cut way back on my activities this year, skipping parties and attending no film screenings, except for one. I am conserving my energy for tonight, because I will be in a (we hope) full night club selling raffle tickets for a guitar and t-shirts to raise money for Girls Rock Camp Austin. I will wear the black bob, I think.

I actually have a full music agenda, which you can look at here. Not that my anemic self can last all night, but I have an agenda anyway.

Wednesday, March 5, 2008

Feeling 7 Up, I'm feeling 7 Up

Remember when Kevin in Repo Man was singing that in the grocery store as he stocked cans of generic food? Continuing with the soft drink theme, I'm feeling pretty good for someone on chemotherapy. It's hard to believe, I know. When I was a kid, chemotherapy was an air-and-land attack. Now, it's not quite so debilitating.

My whining two weeks ago certainly garnered sympathy. I feel I treaded dangerously close to journal-and-not-blog territory with my crying. Certainly, somewhere out there, there is another person more miserable than I am. I'm too fortunate to be that bad off. My kid and husband are too wonderful for me to be that bad off.

Last week I sewed a lot, and that's good. I made a tank top and matching shrug for the kid's birthday. The green, dog print fabric came from Stone Mountain and Daughter last fall and I'd been saving it for a Christmas present, but we all know what I got for Christmas. I also worked with one of my self-drafted patterns for a 4-gore skirt using the pink and brown tweedy stuff I got at Britex (see this link if you want to read more). The acid yellow and hot pink still awaits me, I think it's a project for my next San Fran trip. I again altered two skirts of my own making, which is a chore, not sewing, and added shaping darts to one of my vintage man's shirts. I spent time yesterday working on a sweater embellishment, something that is apparently very hard for me to do. I finally came up with a sort of Betsy Johnson-inspired thing for my boring black Lands End sweater using hot pink stretch mesh … you'll see.

All this, and balancing the checkbook, too. Of course, we are all gathered at the foothills of the SXSW mountain and that is about to dominate everything, including my illness. I often liken SXSW to a trip to a foreign land. You forget what your life "back home" is like. This year, I have an extra bag to carry.

Monday, March 3, 2008

One More Big Red

My non-Texas friends will not get the Big Red reference, so I'm including an image. Once, many years ago when I was young and foolish, I had been overserved on beer and awoke the next morning to the ill effects. It seemed that the only thing cold in the fridge was Big Red and so I drank some.

Ohhhhh, gaaaah, ack. The memory of Big Red's cloying bubble gum flavor is seared on my brain forever and just thinking about having some makes me start to feel ill. Really. Wikipedia says it's a red creme soda, not bubble gum, but whatever. I can't stand it.

The deep red cranberry color of doxorubicin (Adriamycin) resembles a bottle of Big Red, so the sight of that nasty cancer drug also makes me feel like scouring out my mouth before it's even administered. I have just one more round of A/C, or Big Red With An Acetone Chaser, and it's happening Thursday. Then I have about a 2-1/2 week break from treatment before I begin the next drug, Taxol, on March 24.

The most recent infusion of Big Red went much better than the last one. I snagged David the Nurse again and he put his mad skills to work. I had much less light-headedness in the days following treatment than last time.

I felt pretty chipper when I saw Dr. Popular the Oncologist this week, joking around and showing how tough I am. After our visit, he sent me back to the infusion area to co-ordinate my Taxol schedule with the admin there. I was low on food and rest. The sight of people hooked up to IVs and the intimate knowledge of their misery went straight to my gut and head and that's when I truly felt nauseous for the first time of my whole treatment. I shuffled out of there and headed straight for Hill Bert's Hamburgers on 35th (the new one) and got one of those Cokes with the wonderful crushed ice they have, and some crunchy tacos (did you know they have tacos?). Funny how an orange and a protein shake just doesn't cut it when you're