martes, diciembre 26, 2006

Why didn't anyone tell me?

In the latest entry on Alicia's Story, she talks about the way the Cancer Center works, and the way that individual patients can slip through the cracks.

A few weeks ago, as I was sitting in the lobby of the ...infusion center, a woman stepped up to the check-in desk, in tears. From what I could hear, she was from out of town, and it was her first chemo treatment.

The receptionist was telling her she couldn't have the chemo -- her infusion -- without first seeing her oncologist, and he was booked the rest of the day.

The woman had made the infusion appointment before an appointment with her oncologist. That's not how it works. Doctor appointments are much harder to make, so patients make those first, then infusion appointments. Anyone who is a regular at the Comprehensive Cancer Center knows this. This woman wasn't, and didn't.

She stood at the desk, wringing her hands, saying over and over, "I didn't know. Why didn't anyone tell me? Why didn't anyone tell me?"

The receptionist said, "Honey, I'm sorry no one told you this before, but this is how it works," and then told the woman the exact order in which she should plan her appointments.

This really hit home for us. Different people will give you incomplete information or tell you contradictory things. Like during the first chemo treatment, our nurse told us we didn't need to make an appointment or check in to come in for L*'s neulasta shot the next day. Then, we came in the next day, she said hi. We sat waiting for her to come give the shot for about twenty minutes before asking one of the other nurses where she was. "Oh, she went to lunch." This person then set us up with another nurse to give the shot and clarified that advance arrangements and check-in are necessary, and you should set that up during the chemo visit. That sounds pretty calm as I write it down right now, but really, cancer patients and their families are often at the end of their emotional rope, and it's just so wrecking when you're trying to do everything right, but you keep coming into these situations where it feels like you don't know what's going on and nobody tells you.

And it is really heart-breaking when you here the people around you stuck in these impossible situations. (I mean, unless you get all on your high horse about it and say to yourself "I knew to make the appointment! I did it the right way!")

What's more you also hear the people around you who are going through similar treatments but have to go to work tomorrow, or have to drive themselves home from chemo, or who are all alone in this. It makes you cling tighter to each other, but later (like now!) it makes you think about what you can do to help some of those people who need help.

One thing Alicia mentioned in her post is the Cancer Resource Center, and the services they offer. It is really important to know what's available, but--we learned--it's also important to know what's not available. There are flyers for all kinds of support that just don't exist. Example: Support group for LGBTQ with cancer. Sounds right up our alley, right? We call the number. The group is currently defunct for lack of interest. The person coordinating is currently on vacation. OK, fine. L* really didn't want to make another trip into the city and meet strangers anyway. Support group for lesbian partners. L* hands this flyer to Ktrion with a wink and a nudge, taking care of her caretaker. Ktrion calls. The group is currently defunct for lack of interest. The person coordinating is currently on vacation. Okay, assuming this person ever comes back from vacation, how will they ever know whether or not there's enough interest to restart the group? (mumble, mumble, grumble)

One day while we were waiting around in the infusion center for the chemo nurse to come get L* all set up, I was looking around some of the other flyers. I got real upset when I found a flyer for a support group for husbands of women with breast cancer. I was full of self-righteous homosexual rage: "why do they get this resource and we don't". L* pointed out, with great practicality, that for all we knew, the husband group was no more "real" than the lesbian ones.

viernes, diciembre 22, 2006

Knitting Desastre

Okay, so all this week I was working on a knit cap for my nephew who is stationed in ALASKA. (Brrrr! even colder than Hell). I was making this cool pattern known as Mark's Butch, Macho, Roll-Brim Seaman's cap.

To make it, I took apart one of L*s winter scarves from when we were in Hell. It's alpaca, which is warmer than wool. A real nice manly grey and black merle.

I knit on the BART on my way to my department meeting. I was an hour early, so after doing some window shopping in the 'hood (they had the same things there that they have in my 'hood) I went to the meeting space and asked permission to knit for a half hour. This originally caused much excitement, because some unknown knitting implement (I'm guessing it was a needle gauge) had been previously found in the meeting room, so the program director was hoping it was mine and that it could be returned to me. Alas no. It was lost again. Perhaps it was filed away.

Anyway, I knit on BART again on the way home. I knit while waiting to meet with the loquera on Tuesday, I knit at odd moments on Wednesday, like when L* and I were waiting for our haircuts. Finally, while giving a 3-hour final exam on Thursday morning, I finished the durn thing. It was pretty cold in the classroom, so I idly put it on my head. It seemed a little big, but I was definitely warmer. I noticed a couple of students staring at me as they handed in their exams, but I was assuming they were taken aback by my haircut (since I went shaggy through the whole semester. and the summer. and maybe the spring as well).

So before heading back to my office, I stopped at the ladies room to peek in the mirror. Oh, my, my. It looked like I was wearing a a giant black shako.

Rolling up the brim didn't help. The darn thing is big enough around to cover a basketball up to the eyebrows. Too big around and not long (deep?) enough. (Sigh) Back to the drawing board.

What's your American Accent?

I shoulda posted the first quiz, from a couple of weeks ago. It was How California Are You? and I found it on Xoloitzquintle's site. The quiz was pretty biased in favor of the southland but it was still a lot of fun. It kept me and L* and even YoMo pretty busy. This one, I'm pleased to say, came out exactly as I expected. (Although it's scary how close I came to the MidWest)

What American accent do you have?
Your Result: The West

Your accent is the lowest common denominator of American speech. Unless you're a SoCal surfer, no one thinks you have an accent. And really, you may not even be from the West at all, you could easily be from Florida or one of those big Southern cities like Dallas or Atlanta.

The Midland
North Central
The Inland North
The South
The Northeast
What American accent do you have?
Quiz Created on GoToQuiz

My Gangsta Name

I guess if I'd chosen having my hair done over my makeup, I woulda been Esa Loca HomeGirl.

What's Your Gangsta Name?
Your Result: La Llorona

No llores tanto...sonrie...always now, cry later!! Hit up the homegirls and have a girl's night out. Forget bout them problms, just leave it all behind!!

Esa Loca Homegirl
Latina Homegirl
La Baby Face
La Sexy Dreamer
La Baby Girl
La Gata Gansta
La Borracha
What's Your Gangsta Name?
Create Your Own Quiz

Day of Internet Solidarity with the People of Oaxaca

Sleepy-time Thoughts

For a long time now, we've had a ritual where when we got to bed, we try to combat the millions of things swirling in our heads with "sleepy-time thoughts."

Sometimes the conversation is a bit contentious, as when L* says to Ktrion, "what are you teaching in class tomorrow?" and Ktrion protests "That's not sleepy-time thoughts!"

My version of sleepy-time thoughts often involves kittens being groomed by their mother. I used to be able to semi-hypnotize L* into going to sleep, with a ritual of "leaving off the cares of the day." That was quite a while back though, prob'ly six years or so.

Since the cancer diagnosis, L*'s sleep schedule has really gone to the dogs. You can imagine all the scary thoughts that swirl in her head while she's lying in the dark awaiting that elusive sleep.

Or if you can't we can supply a few:

Does that cough mean that I have cancer in my lungs? What if my body can't metabolize Tamoxifen? Someone on my board just went from stage zero cancer [DCIS] to full-blown mets [metastasized cancer]! Should I get ovarian suppression or surgery?)

So first, Ambien was the sleep drug of choice. It worked really well way back in the dissertation writing stage, when L*s head was full of Freud and the Wolf Man, and she wanted to just write straight up till bedtime and then go right to sleep.

But no go on the Ambien this time around. And many of the cancer ladies are also having a lot of trouble sleeping--not only from worry, but because either the lingering effects of chemo or the tamoxifen itself--is interfering with their sleep cycle.

While L* and her doctors attempt to find the right pharmacological solution, we've been trying alternative approaches. We got the ipod plugged into little speakers and we've tried a variety of relaxation tapes, chakra balancing, yoga, buddhism, sleep technology...let's just say it's been a variety.

Our current favorite is Clarissa Pinkola Estés. She of Women Who Run With the Wolves fame. Now I gotta confess to never actually reading WWRWtW. Although we used to have a copy. I think every lesbian in the country had that book fifteen years ago. The fact that a lot of dykes I knew in Colorado were changing their names to Wolf, or WolfSong or Wolfsdottir--something just turned me off to the whole idea. L* was in LA at that time, with the Chicana crowd, so she knew a woman named Loba.

I was sure this book was about getting in touch with your inner wolf. So again, I never read it.

But the sleep situation was getting desperate. And one of the things L* found when looking for sleep resources was a cd called Bedtime Stories: A Unique Guided Relaxation Program for Falling Asleep and Entering the World of Dreams, by Clarissa Pinkola Estés.

This thing is the bomb!

It's set up just like a real bedtime story, with a gentle adult tucking you in, and helping you get comfortable. She speaks in a really soft voice, with a little Spanish thrown in, so you know she's Latina, but a couple of things wrong, so you know she's just a pocha like the rest of us, which is pretty endearing.

She starts with talking about entering into the dreamtime, and how we all fall asleep as children and wake up as children, and she has a nice segment from The Lion the Witch and the Wardrobe when the four children first cross over together.

She tells stories like Sleeping Beauty. Sometimes there's a hint of the Disney animation in her descriptions, but the structure of the story is not about heterosexual romance, but about the spell and it lasting a hundred years.

The whole audio is really well produced, with strains of music occasionally coming in and out (a cello here, a violin there). It contrasts pretty sharply with some of our more low-budget audios (I'm thinking of the talk by Thich Nhat Hanh where you can hear audience members coughing).

There are mouse tales, the Sandman, and Sleeping Hero stories, and it ends with Winken, Blinken, and Nod. We've been listening to it about a month now, mixing it up with different yoga meditations. We wish she'd come out with a sequel.

jueves, diciembre 21, 2006

Reading Alicia's Story

A few weeks ago, L* and I discovered Alicia's Story, which is a column in the SF Chronicle about staff member Alicia Parlette discovering she has a rare (and incurable) cancer. Now this column started running over a year ago, but it was new to us, and we were both sitting on the sofa with our laptops, occasionally saying "what chapter are you on"?

Alicia goes to a lot of the same places we've been to--quite literally.
The elevator at the MMU:

The infusion center. (Note that she was not getting a chemotherapy infusion, and thus she and her friend look better and happier than anyone we have ever seen there).

She even worked with one of the same chemotherapy nurses:

We were glued to our laptops as if we were watching "Los Ricos Tambien Lloran."

When Alicia got a dog, that got us going all over again in our desire for a doggie. Which we're not getting at this time in our lives.

She also shared one experience with a researcher at MD Anderson, which again, reminds you of the distance between the doctors' and the the patients' perspectives

She spent the rest of the time talking about how more research could be done, but sarcoma centers didn't have the money. "Sarcoma isn't popular like breast cancer," she said. "Every time corporations want to give back, they raise money for breast cancer."

I understood why that was frustrating, and part of me was frustrated. But I was also struck by how angry she was because she didn't have money for research, while I was angry because I might die.

miércoles, diciembre 20, 2006

Another view from the parallel universe

One thing I've learned from reading Marion Engelberg's Cancer made me a shallower person is that our experience with oncologists is by no means unique. Nobody likes her oncologist! And here's why:

Oncologists are cold fish who speak in statistics. Very little recognition of you as a person (with fear of death, among other things) versus you as a statistic that could go either way.

lunes, diciembre 04, 2006

A Peek into an Alternate Universe

L* spends a fair amount of time outside our own world and in the parallel universe of cancer survivors. They have a whole lingo of their own, intense discussions on treatments and medications, and hair growth. They talk about gene testing, and read medical journals, and compare experiences with oncologists ("oncs") and drug side effects.

This is an important time in the think-before-you-pink world: In San Antonio, the major cancer conference is going on. This is where the cutting edge research is revealed. The big news last year was that chemotherapy with TC (taxotere+cytoxin) was shown to be more effective than AC, and the whole standard of care changed.

So, when we were at the breast cancer center on Monday, we saw women giving presents to their doctors. What do you give your onc? Well, L* is currently fantasizing about giving her onc--dr. M--season 3 of the L-word, so she can relive every painful moment of dana's diagnosis, treatment, and demise. It's over the secret-santa price limit, however, so maybe it'll be a fruitcake after all.

Okay, so what's an example of this parallel universe? Let's see: there's the Neulasta controversy. Neulasta is this shot you can get during chemo to make your white blood cell count better. You might have seen the commercial: "I'm ready. I'm ready. I'm ready." HELLO??? As if anyone can be READY to receive the toxic cocktail they call chemo. (Yes, this really pisses off the cancer survivors...)

So, anyway, someone posted to the think-before-you-pink board, a casting call for "survivors" to be on a neulasta commercial.


We're looking for women, 40-60yrs, Caucasian, who have used “Neulasta” during their cancer treatment. We want to hear your “Survivor” story.

SEARCHING FOR: Female, 40-60yrs (closer to 50 is preferred; under 40 is too young), Caucasian. If you are a cancer survivor, past the worst stages of cancer treatment and moving on with your life please call us. YOU MUST HAVE USED NEULASTA IN YOUR TREATMENT OF CANCER. THIS IS MANDATORY AND WILL HAVE TO SIGN AN AFFIDAVIT AS SUCH.

If you fit this description or know someone who does, please contact us ASAP to schedule an interview.

COMPENSATION: Professional (SAG) Screen Actor Guild rates paid

Contact O’Connor Casting Company at 312-226-9112 or email:

INTERVIEW DATE: Week of 12/4
AUDITION LOCATION: 1017 West Washington, Suite 2a, Chicago, IL 60607

Now let me first start by saying, that for all we know this could be a hoax.

But, girrrrrll! Let me tell you, those cancer ladies were PISSED! To be called out in this way--

This is what a cancer survivor looks like.

Must have both breasts

Fatties, sicko's and women of color need not apply

Please come testify to how we saved your life...

it was not a pretty sight. Add to that the fact that, if you're lucky, you or your insurance shells out $4000(or more!) for one injection, and that L* and Ktrion credit Neulasta with L*'s Wednesday night high fevers and emergency room visits, and you can imagine how the emails were zipping across the internet.

Okay, another example from the land of think-before-you-pink: cancer cartoons. Miriam Engelberg did this great "memoir in comics" called Cancer Made me a Shallower Person It's a tremendous book for a lot of different reasons. She identifies the ways that the world is suddenly divided into people who have cancer and everyone else. She points out how the "everyone else" constantly tries to distance themselves from the possibility of cancer with pointed questions about the survivor's family history. You can see a couple online, like people's stupid reactions to the news you have breast cancer"and "playing the cancer card"

L*'s personal favorite is Cancer as Hobby