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.

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
Boston
North Central
The Inland North
Philadelphia
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 remember...smile 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.

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.

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.

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.

NATIONAL TELEVISION COMMERCIAL CASTING
FOR CANCER MEDICATION - NEULASTA

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: neulasta@oconnorcasting.tv

INTERVIEW DATE: Week of 12/4
SHOOT DATE: JAN. 30TH – FEB. 2ND 2007
AUDITION LOCATION: 1017 West Washington, Suite 2a, Chicago, IL 60607
THANK-YOU!!!

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


TO BE CONTINUED...

To contemplate while awaiting a post on L*'s hair

Karin Stack's Hair Stories chronicling the regrowth of her hair after chemotherapy. Photographs are one-week intervals.

Tofurkey Day

We spent it with L*'s familia--or rather--with my in-laws' in-laws' in-laws

(in-law to the the third power)

Although this is complicated because I don't think any of the relationships are "legal"; thus we are all really outlaws.

We and L*'s parents drove to L*'s brother's and his (female) partner's house (about 100 miles north of the Hood), and were joined there by her father and his new wife/girlfriend and her father.

Not even Spanish has a word for that (though we do have a word for (in-law+): my sister-in-law's sister to me is my cuncuña.)

I feel like I'm writing mathematical formulae.

I missed my own family, but didn't miss the down-side

Like the time my dad Don Fon brought home my uncle freddy [a schizophrenic with a glass eye who is institutionalized at the state hospital] on a three-day pass, and then just as dinner was ready, we discovered uncle freddy wandered off to get a mcdonalds hamburger and we all had to split up and go searching for him.

Though, as L* reminds me, that was the high point of that weekend.

An odd part of thanksgiving this year was that there was no thanks given. No blessing or prayer. We (L* and I) weren't really sure if this was a matter of inter-faith decision, unclear precedence, or a conscious choice.

Part of the family is muslim, part of the family is Catholic, some of us are unOrthodox (at best) and other are unknown (the in-laws to the third).

The precedence part was that there were three fathers in the room, and it was unclear who was the paterfamilias and thus empowered to give the blessing. (Although it was clear who was supposed to carve the bird).

Anyway, if anyone had the power, it was clearly the hosting couple, but they didn't give a blessing. They did, however, give a prodigious amount of work, gave a great spread, feasted us with crabcakes before dinner, and live live music.

One fun part was the drive to the north, where we all listened to scary radio programs from the 1940s (The Mysterious Traveler). And of course, I got to crochet little bags (for keeping pokemon cards) for the little girls, and that was very gratifying to me.

Also, dinner was accompanied by some deluxe non-alcoholic sparkling cider: blood orange, pear, and a couple of others. yummm!

I talked briefly with my mom on the phone. All the women were in the kitchen drinking, and all the men had wondered off god-knows-where for god-knows-what reason. My cell phone reception was lousy. I always wonder if I'd have better cell phone experience if I didn't have the bottom-of-the-line cell phone.

How was your Tofurkey day?

PS. L* and I exchanged thanksgivings at bedtime

Connecting Dreams

For the past few months, I've had recurring dreams of travel. They're generally anxiety dreams: that's I'm going to miss my connection, I don't have my ticket, I don't have my passport, I'm late.

Sometimes it's about a flight to Europe, which I may be taking with my familia. I think we're supposed to be at the airport something ridiculous like three or six hours before our flight. And we're not (I'm not). And then we ride this shuttle at what seems like the last minute, and then we get to the the plane and there's another really long long line to get on the plane. And in the line I realize that I don't have my ticket, or I don't have my passport.

But lately, it's been about New Mexico. Driving trucks and riding trains. Getting lost in the mountains.

There's one part in particular which involves taking these hilly little roads with lots of forks, and I'm driving the truck as fast as I can and I don't know 1) if I'm going to make it or 2) if I'm already lost.

Sometimes in the dream I'm driving with my folks to Pecos, to catch a train there, but I've messed up the departure time, so it's very stressful and I may not make it. Then when we get to Pecos, the train station is like this funky tourist trap (like a cross between Clines Corners and Mystery Spot). And I'm having to run back and forth between the different buildings.

Sometimes I'm on the train, and it's cold and I have a bag full of stuff. And my train is going literally to the middle of nowhere, where the connecting train will arrive and I'll transfer there. Sometimes I have enough food in my bag and sometimes I don't.

When I was at Notre Dame, I took the bus from South Bend to Albuquerque. I didn't have very much in the way of money, and I didn't really have food with me, and I spent a lot of time worrying about the next stop and whether I would have enough money to eat anything when I would get there, or whether there would be candy machines. I was a poor little waif.

Back to the train dreams. It's funny that the train connections are always in Pecos or else somewhere in Mora county.

When I visited my folks last January, I took the train. My mom picked me up at the train station in Albuquerque, and then my dad took me to the train station in Las Vegas.

My grandma always used to take the train.

When we were little, we took the train from LA to Las Vegas NM, and then to Houston Texas, and then to Virginia...or at least that was the plan. But my sister got sick on the train--she got a terrible migraine--and I think we had to get off and get in an ambulance? And then we ended up flying after that. I should my sister christine about this, because I don't really remember it.

Oh, but back to the train. In real life, the train station before Las Vegas, New Mexico is Lamy. Named for the evil archbishop (for whom death comes not a moment too soon.) But in my dreams, Lamy is under erasure, and instead I'm choosing Pecos, which has ruins from Indian settlements.

Pecos, Peñasco, Pojoaque, Picurís

Suck it up, princess...

I’ve really been dragging my feet on this, but it’s time to start blogging again!

Life is not on a hiatus! We’re going full steam (though sometimes it only amounts to half-speed).

L*’s hair has been coming in. The last two friday’s, we clipped it with the #1/2 clippers, but this Friday we’re holding off so that next week we can move up to the #1. L* complains that she still sees a lot of skin, but there’s definitely hair all over, coming in in both dark and light shades.

For Thanksgiving, I may take up a mascara wand and make all of her hair longer, thicker, and more dramatic!

And we’re juicing! El Paso is gonna laugh at us, because she offered to sell us a juicer six months ago, and that just wasn’t where our heads were at (chemo=no raw foods), but now the juicer is a big ol’ spot of sunshine in our lives. L* makes us these delicious concoctions using granny smith apples, lime juice, ginger and a little carrot. Zowie! Let’s just say with a bottle of tequila, she could make the world’s best margaritas. Oh, my gosh, she made one last week la tuna --that’s red prickly pear for those of you who are culturally deprived--it’s was pink and foamy and heavenly.



and this week she did something with la granada which reached deep down into heart and history of this desert mujer.



I finally made it to the end of this week: Graded and returned all student work, finished my annual review file, attended a work retreat on Saturday and Sunday, and finished the first round of graduate student letters of recommendation. Whew! Now if I can just find the steam to take care of some much needed infrastructure things like laundry and cleaning house.

L* is a dreamboat. She’s been cooking great meals every day, and she helped me with my annual review file, giving advice on color-coding, formatting, printing tabs, and so forth. We’re both funny in that the annual review gives full rein to obsessive-compulsive behaviors. Last year I had a short review, which means I didn’t really need to have my act together. L* on the other hand, had a full on review that she turned in at the end of January. A big bold binder with careful categories, sheet protectors used as packets of information, consistency of font and design. Of course she spent all January working on it, while I was off visiting my folks in New Mexico. But about two weeks ago--when I realized that the far off annual review stuff “sometime in November” was now “a week from Tuesday,” I suddenly started feeling very very sorry for myself! Poor me! All I had was a box full of disorganized material, and here Luz had this beautiful binder! She should just give the whole thing to me, and then I could turn it in. But no. She was a big meanie, and made me do it myself.

I believe her exact words were "Suck it up, Princess!"

Now that I’m on the other side, I really appreciate it.

Today we went shopping for a present for L*’s dad. I won’t tell you what we got, in case he’s reading this blog, but I will tell you about something we spotted in the window of a card and gift shop. They’re called Perfect Petzzz--have you seen them? Here’s a picture.



Alas, it’s not animated, because the little toy darlings actually “breathe”! no lie! their little tummies go up and down in time to their sleeping breath. (if only they were heated!)
L* and I had great fun looking at them, and then she declared “It’s kind of disturbing, though, when you realize they’ll never wake up!”

L* has in fact come to realize how loveable a stuffed animal can be. Before, she thought they were cute, but never actually wanted to hug one or anything. But during chemo, her parents got her a toy chihuahua, whom she named “Chihuis.” There’s a story behind this... There’s a little boy in the bay area undergoing chemotherapy, and his family got him a little chihuahua that they named “Chemo.” A couple of months ago, “Chemo” was stolen, and this was big in the local news but ultimately the little dog was returned safely to the little boy. And we were watching the news story, and crying out “I want a Chihuahua!!” and lo and behold a week or so later, “Chihuis” arrived in the mail.

Now L*, you know, already likes to pose our cats together into cute little loving scenarios. Which they resist. She’ll keep nudging them closer to one another when they’re asleep, so they look like yin and yang, but then at the last minute one of them will wake up, and pop the other one, and the whole harmonic scene will come crashing down.

So now, with Chihuis in the mix...well, you can imagine.

Origami Swans

Way back when, in chemo cycle one, Luz made origami swans to welcome back the spirits of the night. I've been promising you a picture since then. Here it is at last.

Did I tell you all the story of the spirits of the night? For the past four years or so, as L* drifts off to sleep, she wanders in that twilight between wakefulness and dreaming, punctuated with comments like "I feel like there's all these other people here with us..." Sometimes they would be watching us. One time I think they were making us dessert :)

This summer, after L*s brother died, as she was falling asleep she said "all the people have gone. It was too sad."

So after that is when we started the origami. L* also hung beads and crystals, and bought a heavenly toad which is suspended above her pillow.

Anyway, last week, the people returned. We rejoiced and sang a song of welcome.

This little light of mine...

It’s been four weeks since L*’s last chemo, and life is dramatically better!

I feel like her themesong is


This little light of mine
I’m gonna let it shine
Let it shine, Let it shine,
Let it shine


A light has switched on inside, and she’s fully herself again.

In retrospect, the third chemo was the hardest: the end of treatment was so far away, and she was so tired and miserable and drained.

Once the end was in sight again, every day was a new day, a day closer to being better, a day with sunshine.

On Tuesday she had her first follow up with Dra. MM the oncologist. She who seemed to mock L*’s fears last time, saying, “what, you think if I send you home, you’re gonna die?” (see week 2, cycle 3) Yes, the comment still rankles--how foolish we were to worry about something like death over something as small as chemotherapy! the very idea!

But we’re determined to be nice with Dra. MM the oncologist. We can’t face a struggle every single time, and while L*’s chemotherapy treatment is over, she’s by no means done with this oncologist. So we paste bright smiles on our faces.

Actually, L* is in a very good mood: she just came from acupuncture, where she’s working on the post-chemo plan with her practitioner. Ktrion taught a class Tuesday morning and from campus takes a muni streetcar and then a bus to get to Major University Medical Center. So we’re reunited in the examination room, with Dr. M nowhere in sight, so the two of us are trading stories about our day and fooling around and giggling. Ktrion is wearing the suit, and L* is joking about the fact that she “dressed up” for this appointment but is nevertheless dressed only in a hideous exam gown.

We are once again lamenting that we never bought an exam gown, so at least she could close it and it would fit. We came up with several good solutions (safety pins, stick-on velcro dots) but never followed through. I swear, even those paper things would be better.

Dra. MM arrives and proclaims “Well, you didn’t die! I wanna say I told you so!”

Aside: No doubt this counts as banter for those with too much power and too few social skills. I’m reminded of the scene between Hurley and Jack on LOST:

Hurley: What’s that thing where doctors make you feel better just by talking to you?
Jack: Bedside manner.
Hurley: Yeah, that. Yours sucks, dude.

Hers sucks. Our smiles become a little pained our cheerfulness a bit more forced. We try not to make eye contact with one another.

In spite of that awkward beginning, Dra. MM answers all of L*’s questions. L* will start taking tamoxifen within a week, and will take it for five years.

And with that, we feel we've used up all our words about cancer and are now trying to shift gears back into life, or as we're learning to call it, "The New Normal"

Final Round

Monday morning, L* had her final chemo treatment, the 4th of 4.

A lot of mixed feelings: excitement (it’s almost done!), hesitation (still 3 weeks of side effects to come), fear (will the allergic reactions occur? how bad will they be?), tiredness (please let this just be over).

We were running a little behind all day long, so the long day finished at 3:30 pm, (we were up at 5:30 a.m.)

Everyone was REALLY NICE to L* today. After all the tribulations following the last treatment, L* (at the suggestion of her acupuncturist) wrote an email to everyone on her oncology team saying “this was my experience of it all. i was scared. I want to continue treatment.” So while we were waiting to see the Nurse Practitioner, we ran into several of the NP’s and RN’s who had worked with L* (I think the whole Breast Cancer Center has a big staff meeting every Monday morning), and everyone stopped to say “hello” or “I got your LONG email message,” or “you look great this week,” et cetera.

We got the same chemo nurse as last time, Susan, who was also really nice and really GOOD with L*. She got the IV in the first time, she did a guided visualization to get Luz through it. (Previously, L* has listened to the song Frijolero on her headphones while they tried to stick her, but the visualization seemed a better route.)

This week, L* has been very tired and taking lots of naps. Overall, though, she is getting through. She wants to try to go to the Tai Chi class tonight.

Week 2, cycle 3 (3.2)

Luz is sitting here in the front room, wearing my nightshirt, drinking coffee, and reading her email.
Her body is quiet now, not necessarily comfortable, but quiet.

I keep having this feeling, it’s like a little dialogue in my head:

        “This has been the worst week of my life.”

        “If this is the worst week you have in your life, then you’re pretty lucky.”

First, an update on the HIVES, which have dominated the week. They were not a reaction to the antibiotic, they were a reaction to the chemotherapy drug itself: Taxotere (docetaxel). It’s rare (5%) to get a reaction like this, and especially so far into treatment, but it does happen (we know, we did the research). But it takes us all week to get this straight.

Nothing was making the HIVES go away: they were red, inflamed, itchy, and painful. L* had taken all the Benadryl she is allowed for the day and we still had eight hours to go. She had taken the steroid which the oncologist suggested the first day, but we had been unable to get basic information like “should they go away from taking the 3 steroid pills? if they don’t what do we do then? do we take the same dosage tomorrow and keep taking it, or are we supposed to check back in.”

Tuesday and Thursday are teaching days for Ktrion. Tuesday (remember the first business day after a holiday weekend, which here in the Bay also meant the closure of the Bay Bridge)--we decide to take L* into the cancer center so that hopefully she can see her doctor (Dra. MM, the oncologist) to tell her what is going on.

Dra. MM says to take one of the steroid pills.

L* also has an acupuncture appointment the same day.

Wednesday--what would otherwise be Ktrion’s prep day for Thursday classes--Ktrion spends on campus all day with meetings at the beginning and end of the day. L’s hives are angrily proclaiming their presence, making it impossible to get comfortable or calm. Calls to the cancer center are not helpful.

Wednesday night we went to the ER again, where they told us “there’s nothing we can do: you’ve already done everything we could do for you.”

So clearly L* is having this enormous allergic reaction, and it seems to get worse--in addition to the hives (which I would rate as an 8 out of 10))--now she’s having swelling on her face, her lips, her mouth, her tongue.

We think at the ER that they will give her a shot of benadryl and prednizone and all the hives will go away

--(this happened once to Ktrion, during the infamous dissertation writing episode, when she ate the ears off a chocolate bunny and huge red hives broke out all over her body and L* had to take her to the ER)--

--But again this time at the ER, it seems like they aren’t going to do anything: they listen to L*s lungs and look at her throat to make sure she’s breathing ok, and then they just send us home.

So Wednesday night we get to bed around 1 am. On Thursdays, Ktrion teaches from 11am to 7pm. L* is in pain from the hives, and we are both scared. Home alone, L* is taking cold oatmeal baths, applying emollients and trying everything she can think of. L*s parents call her, hear what’s going on, and tell her they’re driving up from the foggy place and will be at the house in 90 minutes.

In spite of having left L* home alone, Ktrion misses her a.m. class, but does get a call into the office so the students can be notified. In addition, Ktrion is less than prepared for her evening class, not to mention freaking out with worry about L*.

L’s parents arrive. They bring love and care. They get another call into the cancer center, where L* is told to increase the steroid dosage to 3 pills, and to come into the office Friday a.m. so that she can see the nurse there.

Ktrion’s students are as unprepared as she for the evening class: it’s the second class of the semester, and new people have added (and are adding) and there was some confusion about what work students were supposed to turn in before class. We’re reading Octavia Butler’s Kindred, a time travel novel. Ktrion proclaims this week’s class a time travel episode, and we will do it all again next week. Students are understanding and mellow. Ktrion heads home

L’s father gets us all dinner. L’s mom sits down and with her impeccable penmanship, makes a list for us to take into the cancer center tomorrow: day by day breakdown of symptoms and treatments, questions about continued care, questions about our concerns for the next chemo treatment.

One new symptom is “hand and foot syndrome”: pain and swelling in hands..another side effect from the chemotherapy. L’s injection site from the chemo is red and inflamed.

Friday a.m we head into the City early, and arrive at the cancer center to try to see a nurse or doctor. This is a busy day at the cancer center, and everyone treats us as if we are staging a civil disobedience in the middle of the waiting room: as if we have pitched our tent and announced WE’RE NOT LEAVING TILL I SEE MY DOCTOR! (this is SO not our attitude today!) The nurse who told us to come in is not on duty today, and we are regarded with deep suspicion by the medical folks. One nurse brings us messages from the doctor, like “She’s thinking of stopping your chemo if you can’t get through this,” which is starting to sound more and more like “Go away and stop bothering us, or we won’t treat you any more.” Despair. Fear. Panic. Tears.

By the way, we have staked out a significant space in the waiting room, not as a challenge to the establishment, but because it’s really hard for L* to get comfortable. Ktrion is carrying a back pack plus her enormous craft bag (what was she thinking?), and ice packs for L’s legs. L* has a large bed pillow. She’s wearing a hoodie, with the hood up and pulled forward, so she looks rather like a monk.

The nurse comes out again with a prescription for percocet for the pain.

At 1 pm, L has an idea. She calls her Chinese Medicine doctor (literally across the street from the cancer center) and explains the situation. She says “they don’t seem to be able to do anything for me here: I’m wondering if you can recommend any herbal supplements or treatments. This results in a brisk walk for Ktrion to the Chinese herb dispensary on Sutter.

Just as Ktrion arrives back at the cancer center, L* is called in to see the doctor. She is scolded (again) for coming into the cancer center without an appointment. Dra. MM tells her ”I think you’re through with chemo.“

Finally, though, L* makes her case: I’m not saying I can’t take this, but I need to know if I’m going to home and go into anaphylactic shock, or if I’m just going to have to deal with the hives! I need to have a treatment plan and know what the next step is. Tell me what treatment to use, what to do the next day and the day after that. Dra. MM first prescribes that L* up her steroids to 3 times a day through the weekend, two more on Monday a.m. and to call the cancer center to check in, then, after further discussion, instead writes L* a prescription for a different steroid.

L* explains that she doesn’t want to stop chemo, but wants to know what can be done for the next chemo treatment. (In other words, it’s not the hives she’s worried about--if you can give her something to relieve the discomfort--it’s the fear that the next time round, the chemo will kill her.) Dra. MM has a faintly mocking air when she asks L* ”do you feel like if I send you home you’ll die today?“

--Dra. MM clearly thinks we spend too much time on the internet and that this is producing fear and symptoms. She’s a really great researcher, by the way. It’s on the people side she’s not as strong.

--another side note from Ktrion about the cancer center: all the women of color are really nice to us. All the white women think we’re a pain in the ass.

--Finally , we arrive home on Friday afternoon. We set up L* in a little comfort station in the front room, and Ktrion goes off to get the prescriptions. (One of which the pharmacist is unable to fill right away because the nurse-practitioner didn’t include information like how many milligrams). Ktrion brings home the steroids, L meditates to calm her soul--looking like a buddha-to-be--Ktrion goes back out get groceries and the other presecription. (L had been prescribed a big ol’ bottle of percocet: they must want to keep her quiet!)

That was our week!

Now it’s Saturday a.m., L has taken all her meds and is calmly reading her email and the Young Survivors discussion list.

Ktrion is getting ready for her Saturday a.m. support group, and then will do shopping for cool detoxing foods for L*: watermelon juice, kiwis, poached pears, vanilla frozen yogurt.

L*'s Chemo Altar

Okay, for the longest time I've been saying "photos to follow," pero, nada. Well L* has put her foot down (and picked her camera up).

Above is her chemo altar. After her surgery, we took down the surgery altar.

L*'s chemo altar has contributions from many friends:

The stones came from Butterflies&Blades (and Little R); Mlei, Miche (and JC and V*V*) They represent the chakras, lined up on the tree of life. (Miche put them in order for us!)

In the lower left-hand corner, there's a keychain made by Frefrinia (and Litle E), and features a handmade shrinkydink of Frida.

You might also spot a little homey, ("to make me tough," L* says), some native corn from my grad student (quinceañera grrl), A photographic postcard featuring the art of Mica (@machanoticias), a conference nametag from MALCS featuring the art of the Digital Diva, some tierra santa de chimayo from the altar of La Chicana (@chicanas.com), our homemade holy candle to Santa Maria Aegiptus, a lace doily crocheted by Ktrion, essential oils mixed by L* (peppermint, lavender and clary sage).

Many other thoughtful gifts have been sent by friends y familia (right now L* is wearing new yoga pants from Espy&ElPaso), sus padres sent her a shirt to protect her from the sun (plus ginger flavored lollipops). Sus colegas have prepared many a nurturing meal.

MLG gave not only her love but her time, staying with us the weekend and midweek that L* had chemo and Ktrion started classes. She cooked us yummy soups, drove L* to her appointments, and gave us lots of TLC

We're now in the third round of chemo (week #2), and so far it's been a bitch! Last week, fever and infection, for which L* was prescribed an antibiotic, which is this week producing HIVES!

Chemo Cycle #2

Hey everybody! We sure like reading the comments and the emails!

Monday August 7 was chemo cycle #2. L* usually wakes up in the wee hours of the morning. Monday she woke up around 4:30 or so, but since we’d had our alarm set for 5:00, we decided to just stay up. No coffee for L* on chemo mornings. She had some lovely oatmeal with raisins and butter and brown sugar. I had my yogurt & granola.

The first thing we do when we get to MUMC is go to the first floor lab to get L*s blood drawn (2 vials) When we went 3 weeks ago, we were running late and there were already people waiting. This Monday, though, we found they’d changed their hours to open half an hour earlier. Thus it was empty and we were in and out quickly, if not painlessly.

Then it was up to the breast center on the second floor to check in with L*s nurse-practitioner. She was waiting for the labs from the blood work, and when they came in, she said they were perfect. Hemoglobin is very strong, so no anemia, although L* has been pretty fatigued the whole 3 weeks.

Then up to the fifth floor for the chemotherapy infusion itself. We got one of the “cool” nurses---*Nya, who wears a “Cancer Sucks“ and has blue and green and pink in her blonde hair. She also knows her limits. Alas, she stabbed Luz twice with the needle--the second time near a bone and a nerve and said ”let me know if the pain is too much to bear“ and it was. Rather than stubbornly poking around in there, she called for reinforcements and the other nurse got it in. They were commenting on L*’s tiny little veins. One of the things they did was have L* soak her arm in a sink full of running warm water. Which, as one might suspect, sent her off to the bathroom.

New nausea medications this time--Emend (a pill) and Aloxi (an iv injection). L* was very mellow after that. Made for a longer day, though, because the Aloxi has to be in L*s system for an hour before they start the chemo meds.

When we get home, we clip L*’s hair very close to the scalp, because the hair is falling out constantly. (Reminds me of when we take the cats to the vet, and it’s like they’re just ejecting hair as an escape mechanism)

Tuesday (August 8) we were back at MUMC for the Neulasta injection. That went really fast and we were soon back at home again.

L* had a lot of visitors during the week. All the homegirls were in town for the conference and Miche, JC and V*V* came by on Monday and MLei on Tuesday.

Wednesday night her temperature starting going up towards the 101 point, but this time we fixed her cool drinks and she had a cool bath, and it went down enough that we were able to just go to bed. Wednesday and Friday were both pretty low days. In fact on Wednesday, L* was too tired to move around or even talk. (Ktrion at first though L* was mad at her, but then finally realized that ”it’s not all about me!“)

We were hoping to go the the Femme conference and see D*bz and StaC, but we end up staying quietly at home instead.

Saturday L*’s parents came for a visit and brought soups and treats. Fideos. yum.

It seemed pretty quiet after all the company of the week before.

L* is suffering from itchy and painful bumps on her scalp. on Thursday we get an electric razor and shave her head. On Friday she finally gets an appointment with the NP at MUMC to look at it.

Watermelon juice is our favored treat!

Ktrion is trying to get in her daily walk, to the Farmer Joe’s market in the Dimond district. She also has found great recreation at the Target in north Berkeley, where she hangs out picking clothes out for L* in the boys section, then brings them home, then goes back the next day to return them.

Friday (August 18) we drove to the foggy city twice! L* has an am appointment at MUMC, where she prescribed an antibiotic gel for the scalp condition (folliculitis--an infection of the hair follicle. not uncommon among chemo patients, but needs to be treated, since the immune system is compromised).

L* has a late afternoon appointment with her acupuncturist. So either we hang out in the foggy city for four hours (!) or go home in between. We decide on the latter, and when we get home, we do all the prep work for dinner and pick up L*’s prescription for her gel for her scalp. we spend nearly 2 hours (!) a the acupuncturist office: L* falls into a deep sleep with the needles in her, and Ktrion, in the lobby, finishes off the L*’s prayer shawl.

Saturday (8/19) we head up to Sebastopol to spend some time with all of L*’s familly.

For L*, taking all of her herbal decoctions, and supplements is like a full time job! This next week she’s up to 4 scoops twice a day of the ”spring wind“ concoction, and supposed to take the chinese mushroom spores twice a day (we’re only up to once a day so far).

Weekend Update

Last weekend we were in a Foggy Place, for my absolute favorite conference: Mujeres Activas en Letras y Cambio Social.

We were a bit nervous about going away for the weekend, but a) we would be staying with L*’s parents, so we would be able to get plenty of rest and not be worn out by all the activities, b) many of our friends from all over would be attending and we could use the love and c) Ktrion had made a commitment to present six months ago. Oh, and d) this is the last few days before chemo treatment #2, so this is when L* is supposed to be feeling pretty good.

It was really nice to see people. We really cut back on what we could attend, but went to one really great panel. Ktrion’s presentation was well-received.

L*s parents made us halibut and mashed potatoes the first night, and black bean tostadas the second night (YUM!)

L* started losing her hair earlier in the week. It was bothering her quite a bit because (In no particular order): it itches; it makes a mess over all her clothes; she was feeling like her face is "funny-looking" and now there's even more emphasis on her face.

Her friend and colleague C* gave her some little soft hats to wear, and we've ordered her a couple more. She hates the idea of hats (let’s not even talk about wigs) and of losing her hair. She got it cut short about a month ago, and we used the clippers (#3) on it again 2 weeks ago. Thursday night we clipped it again before out trip (#2 clippers) and when we got back on Sunday we took it all the way down with a #1/2.

Based on the advice of Ktrion’s sister, we got her a bunch of doo-rags, which are very comfortable (and comforting) to wear under hats or scarves. The fabric head wrap is also working out well, L* likes it because her head is being embraced and she knows her sesos won’t fall out.

Now that the hair is mostly gone, L* no longer feels weird about being bald.

Baby Baby Baby

Baby *zia has arrived!

Such a little sweetie!!

Just got email from Mama El Paso that Mama Espy and Baby *Zia are safe at home.

(We sent the blanket, the hats, and a really cute yoga outfit last week)

Congratulations Familia!

Chemotherapy Week 2

We're just taking each day as it comes.

At first I kept thinking there would be a clear progress--L* would feel progressively better everyday. But the reason chemo works is that it goes through your whole system and kills off all these fast growing cells. So then there's these periods of suddenly more aches, suddenly more symptoms when she felt better the day before. Last week there were a lot of symptoms, including gastrointestinal woes at both ends of the extreme, really devastating fatigue, deep body aches, and a lot of sneezing which has now turned into congestion.

I do think L* is keeping a great attitude, and really trying to just be patient with herself.

Thursday I come home from doing some shopping The house is quiet so I assume L* is out on the deck or in the garden, but I don't see her there. I I call out "are you inside?" and her little voice calls out "yes." At this point, I notice that the bedroom door is closed, and that a heavy duty extension cord plugged into the kitchen outlet disappears into the bedroom. Uh-oh. What am I interrupting?

"You can come in" she says. I open the door carefully to see find two space heaters set up with a yoga mat between them. L*'s laptop is on the dresser, playing the cd of Bikram's beginning yoga class. hijole! what a woman!

Then she explains that she had planned to do yoga in her study at the front of the house, but when she plugged in the two heaters, the fuse blew. So we currently have no internet, no tv, no nada. (grin!) I get this all up and running again. She says "You leave and the whole house goes all to hell!"

Friday was a rough day. L*'s been decreasing her nausea meds so that she's not in a hazy fog and can do things, but the downside is that her nausea is back and strong. She's a pretty assertive little guy! So right now it prob'ly feels like a step back for her, 'cause we did go back and increase the meds.

Saturday night she woke up with aches and nausea at about 2 a.m. She took her medicines right away, but then needed
to take her mind off her symptoms so the medicines could get to work. So we played Scrabble. And we didn't keep score, so it was very fun. Then when she was all relaxed, we went back to sleep. (We bought a travel scrabble set, for when we go to the hospital and stuff. the tiles lock into place on the board so you can pick it up and turn it around)

Hey, I made rice pudding for the first time Saturday. (L* usually makes it). Except the recipe was kind of big and now we still have lots and lots left. (I never used to like rice pudding but now I'm getting older I like all those things).

Sunday we went for a little bitty hike up the creek, and then sat and played cards, and then L* laid down for a while, and then we came home. For dinner we had udon noodles with stir fry: L* did the stir-frying.

Forty-nine days since her brother T*s death. L* served him a bowl of noodle and stir fry, arranged a place setting like an altar, with roses, candles, sage, and an origami swan.

Also, L* has been making origami swans to welcome back the spirits of the night. She hung them in the corner of the bedroom.

L*’s mom brought her non-cheddar goldfish crackers and they are a big hit.

First week of chemotherapy

I honestly don't know if I'll be able to keep blogging. When things are bad, it's too hard to write about. When they get better, putting them into words seems to minimize what's actually going on.

L* had her first chemotherapy treatment a week ago today (Monday). It's been a week of fevers, nausea, restlessness, exhaustion, deep body aches, and tears. Emotionally L* is very fragile. On Monday, when we got back from her treatment, she was mourning her brother, who otherwise would've been calling to see how she's dealing with the treatment.

It's a hard row to hoe.

Saturday L* got her hair cut very short, and Sunday night we smudged her in the four directions in the names of Guadalupe, Coyolxauhqui, Coatlicue, and Tonantzin.

On a good morning, breakfast is a kiwi fruit and an almond. Poached pears have also been very well-received.

The worst was definitely the trip to the emergency room on Tuesday evening with a temperature of 101 degrees. Yeah, with a compromised immune system an urban ER is definitely a very scary place.

On the bright side and the funny side--and she always seems to be able to find these--L*'s passionate "hobby"** of avian flu preparedness has been a godsend. Who else would have on hand the N65 respiratory masks? Of course, we now know that chemotherapy patients should always wear such masks if they have to go to the ER, but did anyone tell us this beforehand? No. But as I said, my baby's bird flu preparedness is coming in very handy.

** bird flu as a "hobby." I tried explaining this to my friend A Sue* several months back:
A Sue: What do you mean she has a bird flu hobby? You mean, like an obsession?
Ktrion: One could call it an obsession. But I prefer to call it a hobby.

We spent a lot of time last week trying to get a hold of the nurses and nurse practioners at MUMC. Which was a lot more difficult than we'd anticipated (Hey, I thought we were a TEAM!). Our pharmacist is a life saver.

Oh, and a rather trivial thing in comparison to everything else is that my laptop is out of commission. Something to do with the place where the power cord goes it. It's still under warranty, and I should have it back in a week or so. What that means here and now is that I don't have handy those great quotes from Linda Hogan's The Woman Who Watches Over the World, that I wrote in my (computer) journal weeks and weeks ago.

ALTAR: a very warm thanks to la gran Chicana de Chicanas.com, who sent a cazita with polvo de Chimayó, from her altar to ours. L* had dismantled the surgery altar a while back, and last Sunday, she built a new chemo altar. (foto forthcoming).

ORIGAMI: we are making little swans. L* wants to hang them in the bedroom, with light catchers, beads, and prisms, to bring back her protective spirits.

CROCHET: I finished off the batch of yarn that had arrived and the baby blanket still was not finished. Ordered more and worked it in, and am now finishing off the ruffle. The baby is due today. I also started a prayer shawl for L*, which is currently filled with Ave Marias.

TV: We're watching the first season of LOST. L* has the same haircut as Jack, and she keeps tugging on it to see if it's still anchored.

HOUSE: the landlord is himself a cancer survivor. I hope that he's put off making a decision on the house until after L* finishes chemo.

L* and I went to Tai Chi class on Saturday a.m.--her first excursion out of the house. Yesterday her parents drove up from the foggy place, with gentle soups, ginger ale, fruits, and graham crackers.

This morning, since we were up early, before the sun cleared the hills, we took a walk around our neighborhood. She got a lot of ideas from people's gardens, and also scored a cluster of succulents (chicks and hen)

Test results and chemo plans.

We just got home from the oncologist’s office. L* has already changed out of her dress shirt and into some comfy sweatpants and her La Llorona t-shirt. She’s also talked on the phone to friends (Hi Julien!), a nurse, her mom and her dad. Is still on the phone with her dad, going over all the names of drugs with him.

The Oncotype DX Assay (which was not paid for by the insurance) finally came in

L*’s prognosis with tamoxifen-only is good but would be significantly better with chemotherapy followed by tamoxifen , which is what L* has chosen.

They don’t think she needs a port (basically an IV entry point in her chest for the duration of chemo treatment), because she has good veins. (The oncology nurse advised: No coffee on the morning of chemo).

She’ll be starting chemotherapy (Taxotere and Cytoxin) next Monday, will have treatment every three weeks for four cycles (i.e. July 17, August 8, August 28, and September 18). The night before and morning of treatment, she’ll be taking steriods. The day after treatment, she’ll go in again for a white blood cell booster called Neulasta (may our insurance company cover it!)

So L* will be done with chemo and feeling more or less back to normal the second week of October.

Ktrion’s fall quarter starts August 29th, and L*s fall semester starts September 27.

Tomorrow, L* has a consultation at the Center for Integrative Medicine about complementary therapies (in Traditional Chinese Medicine, for example).

The yarn arrived this morning for the baby blanket.

The landlord has not yet decided about selling the house.

Cleaning in case of chemo

Today L* and I are going to clean the house very thoroughly.

tomorrow we have a meeting with her oncologist, and L* will prob'ly be making a decision about chemotherapy.
That may mean she'll get a port put in tomorrow and start chemotherapy on Tuesday.

Thus it's important that we can come home to a very clean and peaceful house tomorrow.

We went to our first Tai Chi class yesterday and it was GREAT
:)

One of the things we'll find out from the onocologist is the results of her Oncotype DX assay. These will categorize her risk of recurrence without chemo as Low, Intermediate, or High. Pretty sure that for either intermediate or high she will choose chemotherapy.

She's working in her garden right now. We got a patio umbrella so that she can hang out there and enjoy it without getting too much sun.

We’re still drinking lots of delicious green “republic of tea” tea.

I am eagerly awaiting a small shipment of yarn. children complicate knitting and crocheting.

I was working on Baby *zia's blanket about 2 months ago at our friend J*’s house. J*’s six year-old son and his friend started playing with one of the balls of yarn, and then next thing I knew, the whole living room looked like a game of "cat's cradle" gone awry. I let them keep that ball of yarn. (They’re good little guys! I’ve crocheted them both skully caps)

Then, two weeks ago, I ran out of the yarn to finish *zia's blanket. (Ay!). I found the right yarn on the internet but the service has been muy pokey. They finally shipped it on Monday, so I keep watching for it every day. (except today)

Our friend El Paso offered us a good deal on her new juicer. I don't think we're ready to commit to that yet, 'cause we're just getting started with the traditional chinese medicine thing, which is all about no raw foods. I was really tempted,
though, because L*s youngest brother has had a juicer for about a month, and he swears by it, and made us a lovely gazpacho when we saw him two weekend ago.

We finally watched Almodovar's All about my mother. LOVED IT! oh, my gosh, what a great movie. makes me want to write more and more and more. penelope cruz was sporting a particularly lovely crocheted shawl :)

Guardian of the Home

San Jose is the Guardian of the Home.

L* made an ofrenda to him this week.

Our landlord is deciding whether he will try to sell the house we are renting from him (thus pushing us to find a new place to live during what is not the best of times) or to wait another year to make such a decision.

We’re praying to San Jose to keep us safe in our casita.

The sprouts didn't get us!

I know I’m behind on the blog. Two days ago I was thinking “I should take a picture so everyone can see how big the sprouts have grown.” Yesterday the sprouts escaped their container and started crawling across the kitchen counter. Today we wrestled them into to two containers and put them in animated suspension in the fridge.

Monday we decided to take just take care of ourselves.

We went to Dimond park and walked up the Sausal Creek trail. A little bit of wilderness just a few yards from the hustle of Fruitvale. We walked through several tides of children along the way. then we hung out at “Rock Mound with Manhole Cover” (this is how it’s described in the trail guide “Sausal Creek Quest,” written by Oakland High tenth grade biology students). L* listened to the creek, the water falling from on high. I was listening to the trees. One of my daily meditations a while back said to sit next to a young tree and hear what it has to say; notice how your thoughts change. Then sit next to an old tree, and hear what it has to say. The “young trees” were the kids downstream who were having an absolute ball. Reminds that kids are like birds in a birdbath!.

Looking at the trees which arched over the creek, some more on the horizontal than the vertical, I was thinking how none of the trees worries about being ugly. We don’t say “I like that three, but not that one: it’s ugly.” They’re all trees. They each have their own beauty, whether they’re growing on the x-axis or the y.

Home again, we treated ourselves to a delicious dinner that L* dreamed up: sopes stuffed with roasted eggplant salsa. An easy meal, given the Mexican Market on the corner and the new Farmer Joe’s that opened this weekend in Dimond.

Riquísimo!

Tuesday L* had a private yoga lesson at the Bikram studio in Albany. She’s used to going to yoga three times a week, which is good for her stress, her body, and which makes her very happy. She hasn’t been since her surgery. She was able to do all twenty-six poses, once, and her teacher gave her some modifications to get more out of her practice.

We finally got the news on the HER2nu test (the FISH test) and it came back negative. Glory Hallelujah! L* was not looking forward to a regimen of 4 rounds of chemo followed by a year of Herceptin.

So now they’re doing the Oncotype DX assay. This will give us a better idea of L*s risk of recurrence, based on gene markers of women who did and did not have recurrence. The test will give her a score which will be indicative of low, intermediate, or high risk of recurrence. (The test is only done on women who were node-negative and whose tumors were ER+).

If L* starts chemo, it may be as soon as the second week of July. A lot of our friends have reservations about chemo. I mean, it is totally toxic. On the other hand lots of women choose chemo and live. I honestly didn’t have any idea what L*s feelings were about chemo: I was afraid that the side effects (nausea and mouth sores in particular) would seem so scary that she wouldn’t consider it.

L* is considering it, because she reaIly wants to survive this thing. I think of this as the Malcolm X approach to cancer: “By any means necessary.”

...you know we’re always thinking about language in relation to all of this. Like a lot of times the medical folks use the language of war (arsenal, weapons) and the overall metaphor can be kind of fascist (suppressing invasion, destroying the nonconformists) and totally not work for us queer border subjects. So I’m always looking for language of resistance that we can identify with.

Sidebar: L* talked to the oncologist about Dana and The L-Word because that has been looming large in our imaginations. For those of you who don’t know (and none of the oncologists or surgeons or therapists we’ve talked to in the past six weeks have admitted to watching The L-Word), this character Dana finds a lump in her breast (actually her girlfriend finds it), then immediately enters into the Cancer Inc. machine. Surgery. Chemotherapy. She survives the cancer but dies from the chemotherapy: she gets an infection and since the chemo has totally destroyed her immune system she has no defense and dies. Yes, world, this is the image these very well-educated women have of lesbians and breast cancer. Would anyone care to join us in a rousing chorus of WE HATE THE L-WORD?

And Dr. Susan Love, whom we otherwise really like, put on her website “but Dana didnt die of the cancer! she died from an infection nobody could have foreseen!” This was beginning to sound like the Bush administration talking about the negative outcome of the invasion of Iraq. (Dr. Susan Love actually appeared on the L-word, telling Dana that she was doing all the right things--not knowing that the producers had already predetermined Dana’s prognosis not on reality but on maximum dramatic value).

But apparently this is not the most likely scenario. Rarely ever happens. “Never in the five years I’ve been here!” and MUMC treats a lot of women with breast cancer per year.

Our spirits, our sprouts

Amidst the turmoil and grief brought on by the death of L*s brother and its aftermath, we’re still living our life and making plans.



We’re getting ready for our foray into live food. Broccoli sprouts have many anti-cancer properties, and the only way to get them really vibrant and fresh is to grow them.  Our two “Easy Sprout” systems arrived earlier this week.  So Ktrion started a batch of lentil sprouts (because we have lentils in the house and because lentils are supposed to be easy to sprout).  They’re coming along very nicely. Today is day 4 for the lentils (1 day soaking, 3 days rinsing and draining).  Friday  we got our hands on some organic broccoli seeds and they soaked overnight and are now in their draining (and yes, sprouting!) stage.  

We had a consultation with the oncologist earlier this week to discuss Adjuvant (post-surgery, systemic) treatments. Monday we were supposed to watch this video about population studies (if 100 women have early stage breast cancer, 74 of them will be completely cured by the surgery...) Let’s just say we didn’t feel particularly well-prepared for decision making at the end of it.  Tuesday was the appointment with the breast cancer specialist Dra. MM.  Ktrion got grouchy right away when the male fellow came in first and started asking questions (and asked L* if she was a student, for pete’s sake! made me so mad!), and then Dra. MM came in and the information was coming fast and furious!  We audiotaped the session and Ktrion took notes. We’re still waiting for some test results. We now know the tumor was ER+ and PR+ but don’t yet know its HER2nu status. Depending on that, they’ll do an Oncotype DX assay and that may give us more information to make decisions about treatment.  

L* is ready to do whatever it takes to survive this cancer thing, so we’re planning an aggressive treatment regimen. the folks at MUMC are very into the patient making her decisions as opposed to telling her “this is what you do next” or “this is our treatment regimen.”  

Even so, It’s pretty frustrating for L* when they talk about the risks of recurrence and then say “so you’ve got a pretty low risk.”  Yeah, when it’s not YOU they’re talking about it seems like a pretty low risk, but when it IS you, it looks pretty huge.  L* and Ktrion were discussing one of the tests they’ll perform on L*s heart and Ktrion said “that doesn’t sound so bad.”  And it doesn’t, if it’s not you that it will be happening to.

L* is frustrated by the way she’s expected to be GRATEFUL (as the patient).  It’s her body that things will be done to. She’s in this lucha, but that doesn’t mean she has to say “oh, yes, it sounds like it will be so much fun when you do that to my body!” 

L* still has her surgery bandages on, though it looks like they’ll be coming off later this week.  You’re supposed to leave them on till they come off (they’re these clear plastic things) because the longer they stay on, the better and cleaner your healing). 

L* is continuing to expand her exercise, doing pilates with a roller, taking a t’ai chi class, working with small dumbbells, stretching and reaching and growing.  

This last week we really appreciated the TLC of Las Yolis and MLG/VC who housed us in MP and SL last weekend, and just loved and cared for us in the midst of real trauma. 

Why we've been offline...

L*s brother died of a heroin overdose last monday. He left us with all the chaos he created. We’re doing the best we can to cope.

News alert

El(L*) spotted doing standing-head-to-knee pose:

Pain

EL was given a questionnaire at the breast center:

What does your pain feel like?
Circle response: sharp dull burning aching throbbing tender numb stabbing gnawing shooting exhausting penetrating miserable unbearable continuous occasional



L* circled sharp burning throbbing numb stabbing shooting occasional

After filling out her questionaire, L* began talking about the pain sensations she’s been feeling.

She is resisting the idea that her pain is "phantom" pain, as described by some literature on mastectomy. The way we learn about this idea of "phantom pain" is usually from television or fiction, where they talk about someone having a leg amputated, and then afterwards, feeling pain in that leg. It’s like the ghost of the leg.

That’s not what how L* describes it. We’re calling it “poltergeist pain,” because instead of there being a ghost in a specific location behaving a specific way, it’s like the poltergeist is in the house, causing random acts of havoc.

So there’ll be a non-specific pain: L* feels it but can’t locate it.

Or, she has had a distinct sensation of an open, festering sore on each side of her back. She asks me, repeatedly, to see if anything is there. But, nothing is there. Her pain is causing some kind of mixed message and it is oddly disconcerting.

More often, she feels something like electrical impulses jumping along one particular thread of a muscle or tendon. Or, something inside her grabbing onto a ligament and squeezing it hard and tight until it begins to burn.

Nurse D tells us that what she is describing is “nerve” pain. I don’t know if this is right, but I imagine it like the body is a whole network (cyberspace), and after the surgery there’s no communication from a former hub, so all the rest of the net is sending out signals to see if they can establish contact.

Another thing during the follow up visit: L* was telling Nurse D. that she has a lot of energy: she wants to get up and be doing things. Nurse D. said this is actually because of the pain: the body is trying to move away from the pain, so it’s telling L* let’s get up and go!

Follow-Up Visit

Yesterday L* (El) had her follow-up visit at the breast care center. Fabulous Nurse D. was great with L*, getting her to talk about the pain (for which she is under-medicating) and teaching her the new exercises to work on for this week (At which L* already excels).

I had my head in my notebook during most of the visit, but Nurse D. said L*’s wounds were healing great. She removed L*’s drains, which is a dreadful experience--Read Bint Alshamsa to hear how awful it is. (pretty awful.) Nurse D. sprayed the pain med on, but still EL described it as like the scene from Alien when the monster (baby) thrusts its way through the hosts chest in a bloody explosion.

Dr. H. stopped in to go over the pathology report with us. We still don’t have all the information (whether the cancer was postive or negative for estrogen and progesterone, whether it is her2nu). They finally gave L* the full staging, and the cancer was Stage 1, which is very good news. In another ten days or so, we’ll see the oncologist about the next phase of treatment.

For now, L* is focusing on rest and recovery. You see (below) the collage that L* worked on during the week. She loves her garden--which was nothing but dirt when we first moved in--and she has filled it with geranium, bougainvillea, clematis, passion flower, cactus, our lemon tree, chard, zucchini, La Virgen, nasturtiums, and many many different succulents. (my contribution has been scavenging clippings, especially of geraniums, cactii, and succulents.

She’s spent a lot of time on the deck lately enjoying her garden, and by Tuesday she was already watering. Wednesday she started taking the pictures and then spent the last two evenings photoshopping.

Oh, that reminds me--one funny thing during L*’s hospital stay was that all the nurses and doctor’s kept commenting on how tanned she was--“were you on vacation?”. Somewhat indignantly, L*’s dad said “Tell them you’re Mexican!” Now, mind you, three Junes ago, L*’s parents came to visit us in Ohio, and everyone there kept commenting on their tans, and L*’s dad was giving us a hard time because of our pallor. “Look,” he said, taking of his wristwatch and and showing us the pale skin underneath, “this is the color I’d be if I lived in Ohio.”

It made us appreciate again living in the East Bay, where there's sunshine. All these pale San Franciscans, forget about the sun. (Of course, they're also working 8+ hours a day inside, and don't have the leisure that we do).

L*’s legs also got positive attention for both their brown and their muscle definition. But her feet were the pièce de résistance. Because they were doing a sentinel node biopsy on both sides, Dr. H. was initially planning to have the IV in L*’s foot. Because of the risk of lymphedema, L* will have to take care of her arms, not constricting them, not allowing dr.s to take blood, take her blood pressure or any of that from her arm. But this was right before the surgery. And Dr. H. pulled up the bottom of the sheet to look at L*’s feet. “What perfect little feet!” she declared. And so, ultimately, Dr. H. decided that L*’s IV should be in her right arm.

L* and I were declaring ourselves the best shod couple around, as we walked from the cancer center to the local library to return my library books. L* was wearing what she described as “my cancer present.” When she found out about the cancer, one of the things she did was order a pair of Nike Air Rifts (online) because she had a pair three years ago, and they’re still her favorite even though they’re no longer presentable for wear in public. They’re really comfortable and they make her happy, so they were a present she got for herself as part of taking care of herself during this period. They arrived on Wednesday, and L* declared “Happy cancer L*” as she opened the box, “this is your cancer present.” (I was wearing my red camper mary janes.) There was pretty stiff shoe competition, in fact Nurse D. was wearing some beautiful black spanish shoes that were not campers, something with an E.

Today I helped L* in the garden, seeking out and clipping off those dreaded blackberry bushes. I think I finally understood that Abbey Lincoln song, which is prob’ly not saying “without blossoms there would be no berries here at all,” but rather “without brambles there would be no berries here at all”

L* is still pushing herself in the exercise area, and did the first four poses of the Bikram series.

Reading Audre Lorde

Reading Audre Lorde’s The Cancer Journals is a profoundly humbling experience. I’ve mentioned before that there are many books that I have put off reading because I was too afraid. Lorde’s The Cancer Journals is one such book, the more so in the last fourteen years since Lorde’s death. The journal is a testament to survival: she was first diagnosed with breast cancer in 1979,

Reading the book at a distance of nearly thirty years, I am struck by the changes in the health care system, and the persistence of contributing factors to breast cancer. The technology has improved tremendously, but have the attitudes?

The reason I say I’m being humbled by reading the book is, as many women of color who came of age and came out reading Audre Lorde, she was a Larger than Life figure, and one whom we--foolish children that we were--could never imagine actually dying. I think of her as a tremendously powerful,lesbian, “a Black Woman Warrior Poet doing my work, come to ask you, are you doing yours?” (CJ 19).

And she is all of that. But she’s also a woman who came out of anesthesia screaming and trembling with cold. Who, on being discharged from the hospital, was bullied by a nurse into wearing a lambswool prosthesis (pink, by the way).

And it was in reading that I was able to see her as a mere human, someone with moments of pain and weakness and neediness, and someone who is sometimes just to tired to put up one more struggle

She talks about the tremendous pressure to wear prosthesis from everyone in the breast cancer community, which she calls Cancer Inc.,

Here we were, in the offices of one of the top breast cancer surgeons in New York City. Every woman there either had a breast removed, might have a breast removed, or was afraid of having a breast removed. And every woman there could have used a reminder that having one breast did not mean her life was over, nor that she was less a woman, nor that she was condemned to the use of a placebo in order to feel good about herself and the way she looked.

Yet a woman who has one breast and refuses to hide that fact behind a pathetic puff of lambswool which has no relationship nor likeness to her own breasts, a woman who is attempting to come to terms with her changed landscape and changed timetable of life and with her own body and pain and beauty and strength, that woman is seen as a threat to the “morale” of a breast surgeon’s office....

As I sat in my doctor’s office trying to order my perceptions of what had just occurred, I realized that the attitude toward prosthesis after breast cancer is an index of this society’s attitudes towards women in general as decoration and externally defined sex object.

You see, the warrior continues to fight, but it’s important not to forget the mere humanity that’s there as well.