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.