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.

Jardín de El/L*

Altar

YoMo helps a sister out

YoMo just sent me the the best email today. Titled “I feel the volcano wanting to erupt,” she described her own feelings of rage and anger, a security barrier to protect her since first hearing about L*’s diagnosis. As soon as you get some vacation YoMo, you come up and visit us so you can see L* with your own eyes. The woman voted today, four days post-op y todo. And was officially he-she’d at the polling place. (nicely)

L* was watering her garden while I was still reading my a.m. emails. She painted a pot so she can transplant one of her plants into something bigger and prettier.

She went out with the camera to take fotos of her succulents, her bougainvillea, the statue of La Virgen in the back yard. Inside she fotographed her altar (pictures coming soon)

She started taking showers yesterday. Today she shed the compression bandage undergarment, and went around in a muscle t and a baseball shirt. Muy bien guapo! She let me put my hand on her chest wall and it felt true and solid.

If she continues the way she’s going, she’ll have her drains out on Thursday and then be free of that baggage.

The way I go on and on about how great she looks, I’m afraid you’ll think I’m downplaying what a big deal this is. I mean, no lie, she’s had big surgery, she’s sensitive, sometimes itchy, and this morning she woke up feeling like she’d been hit by a truck. but the pain medication gives her back her mobility, so she can move around have a fairly normal--if overly sedentary--day.

Follow-Up

L* was reading my last entry, and then we talked about it.

She drew a couple of interesting analogies: one has to do with family members abusing drug and alcohol. When a family member is in the midst of that, there’s nothing you can do about it, but worry, and the stress and anxiety can be devastating. Now, she’s not saying that my care-giving is some kind of sick co-dependency (grin): it is in fact necessary and healthy. And L* is not an addict ignoring the effects of her actions on everybody else. But there is a certain similarity there of a feeling of powerlessness (the 12-step language is “I didn’t Cause it, I can’t Cure it, and I can’t Control it”).

There was a time in my life when I believed my love, my will alone could cure. That was before I learned some humbling lessons in mortality.

L* also drew from Hayden White to talk about Agency and Patiency. The Patient has no Agency: when L* is being wheeled off to surgery, it is all totally out of her hands, and there’s powerlessness in that too, but there’s also a freedom from the kind of worry that her parents and I were left with.

A little Care-Giver Venting...

People keep saying that this is as hard on me as it is on L*.

I appreciate the caring behind the statement. The fact that it ignites RAGE in me is, perhaps, a suggestion that I am not doing as well as I think I am.

Because, for example on Friday, they were cutting L* open and taking out parts of her body and looking for more cancer.

me, i was sitting in a waiting room for three and a half hours. No comparison, really.

Only how come even writing this makes me start to weep?

And how come the sound of my phone ringing makes me angry?

I don’t want to see or talk to my family or friends. Because that will make me cry, and I don’t want to cry.

(isolating, i think this is called.)

There was a point on Thursday, when there was talk of sending L* home the same day as her surgery. I know she’s always much more comfortable at home than in hospitals, but I think I started panicking, thinking, there’s no way I can do this.

And that fear still comes back, and I give myself a mental shake and say “you are doing this. You need to do this and you will. This is small in comparison to what L* is going through.”

I’ve been seeing a pretty good loquera (shrink) lately, but, ironically, she left town just before we found out L*’s surgery was scheduled. Today would ordinarily be my loquera day.

Yesterday I finally got some exercise: L* and I are working on giving me task-oriented exercise. Walk to the Mexican market. Walk to the clothing stores in the hood. Walk to the library. Walk to support group.

I’ve finally caught up on my sleep, and I think I’ve finally drunk enough water this morning.

CNN is showing scenes of fighting in Fallujah. It looks just like Las Cruces, New Mexico.

L* is going to take her shower and then, if she’s feeling up to it, we’re going to go vote.


Please do send emails even if I don't write back.

Post-Op, Day 2

L* got a good night's sleep last night. Her goal today is rest and recuperation.

That said, she's already taken several walks around the living room, the dining room,
and out into the garden.

She had her regular breakfast, and snacked on watermelon and dried plums.

Now she's reclining on the day bed, surrounded by pillows. Earlier she was reading a book (Monique Truong's The Book of Salt)
watching a lifetime movie (and maybe dozing off). We set up a netflix account so that we can catch up on all the movies we haven’t seen in the past few years.

Although initially hesitant to take the vicodin last night, L* has been taking them on schedule today.
I was reading Audre Lorde, and she said that for her the first day after the surgery was great and that next days were full of incredible pain.

I forgot to mention that L* has lost her voice, from the intubation tube during surgery. When she first got out of surgery she whispered that her throat hurt, and asked for ice chips. Today she can speak softly to me.

I turn my phone off when it starts ringing. L* gets many loving phone calls from friends both far near. She has to speak with my voice. People call up all excited hoping to speak with her, so it’s just a little awkward. Everyone is very sweet.

We planned on tabouleh for dinner around six. Now, I should explain that L* has done nearly all the cooking for us, for the last ten years. I often play the role of sous chef, washing and chopping vegetables for her, but almost never actually prepare a meal. This is because a) L* likes to cook, b) L* is a really good cook and c) I don’t really have a joy for cooking. I usually explain that I appear to model myself on my mother, twenty-five years ago, when dinner was accomplished with much banging and occasional curses.

L*’s trying to relax (she’s bored) but the medications keep her from really getting into The book of Salt Finally I remember I have a mystery on audio, and she’s able to tune in and tune out.

I take a nap around three, and wake up a little behind time for making dinner. With much banging, and at least one little break, I get most of dinner together but then have to run out to go buy a tomato. Clearly this cooking part is going to take a little more work and concentration.

The tabouleh is a little harsh on L*’s sore throat, but she makes a valiant attempt. After a little while, she decides that the some of the leftover lasagna would provide the necessary protein.

Earlier in the week--before the surgery--L* had read Octavia Butler’s final novel Fledgling, which features a vampire race, the Ina. L* tells me, “If I were Ina, I could go out and eat some meat to heal. Or if you were my symbiont, I could just take some of your blood.” We decide that sushi would be a good option for Monday night. Tuesday another colleague is bringing us dinner, and on Wednesday, we’re gonna set L* up at the kitchen table, where she can be the executive chef, and I will be the sous chef working under close supervision.

We come up with a plan for the evening so we can be in bed by ten.

I haven’t mentioned how full of laughter my L* is. All the other butches--studs, as the young folk say--will be very jealous of her in her newly liberated state. YoMo telss me the same thing when she calls.

Report from Day 1, Post Op

I’m behind on the updates. I really appreciate all the emails and comments. L* is online now too, and has enjoyed reading them.

Saturday, our first day back home was a little bit hard. L* was resting and I went to our local Safeway to get her prescriptions filled. My timing was off: I arrived at 1:00, just after the pharmacy had closed, so the pharmacist could have lunch. We really like the pharmacy there, because they pay attention to you and treat you like a person, so I decided to walk to the public library until the pharmacist had returned. I picked up some books I had requested, including Audre Lorde’s The Cancer Journals.

I hurried back so I could be first in line, but alas, someone else was quicker than me. An elderly lady was there for her husband and she had many and complex requests for the pharmacist. (For example, they had a really expensive prescription that he might not actually continue to use, so she was consulting to find out what was the least amount she could get to last him till his next doctor’s appointment. You can totally understand her position!) So fifteen minutes into this, I send L* a text message letting her know.

When it’s finally my turn, as expected, I take up at least as much time as the lady ahead of me. The insurance has been refusing L*’s prescriptions lately, so the Pharmacist (a really nice South Asian woman) called the insurance company to work that out (one of them had the wrong birth date on record). Then, our doctor wasn’t in their database so she had to enter all her information. Then she had to call the doctor about the prescription which is very expensive and usually not covered by our insurance. All told, it was almost 3:00 by the time I was done, but thanks to the good offices of our pharmacist, I paid only $25 for three prescriptions.

Before I had left home, I had left the front door open and the security door locked, so that L* could have some fresh air there in the living room.

While I was gone, the mailman arrived, stuffed an x-ray film into the security door and scolded L* because our mailbox was full. “When was the last time you emptied it?” (Ummm, Thursday?)

Then an enormous bouquet was delivered to the house. L* didn’t really want to let the delivery man into the house and he gave her some grief about this.

Also, by the time I got home (remember, two hours after I had left!) the pain medication that they’d given her at the hospital was wearing off.

So L* was in pain, harrassed, and dismayed that I was gone so long. Pobrecita!

She’s wearing a compression bandage, which has these weird bra-like straps--I’m sure if she were a man they would just tape her ribs, but no doubt someone designed this one so the patient would still feel feminine. L has a drain under each arm. We empty the drains twice a day.

L* is being a tremendous good sport about everything. I know she’s tired, but she’s also excited to be at home again, full of the beautiful colors L* has put in every room.

L*’s colleague CF brought by a vegetarian lasagna, salad, cherries, plums, and a baguette. CF has also organized L*’s co-workers to bring us dinner this week. She’s so thoughtful! The lasagna was delicious, made with egg noodles and some hint of a secret ingredient. (It’s chipotle!)

L* rested and dozed during the day. We went to bed early (9 o’clock) but I was already stupid-tired by then.

Home at Last

Thank you all so much! for all the love and support!

We are back home. L*s surgery Friday went really, really well. Dr. H is our hero. We give thanks to our santos, mothers, orishas, and Great Spirit, and to all you friends near and far.

L* is recovering really well. She’s sitting on the day bed, drinking Moroccan mint tea.

I’ll post more soon!

Scheduled

We’ve had a candle burning (with a butterfly sticker) today, with prayers that K**ru, Dr H’s scheduler, would be able to get L* on Dr H’s surgery schedule within the next two weeks.

This has come to pass and with a vengeance. L* is scheduled for surgery on Friday morning (yes, less than 48 hours from now).

Thank you to cracked chancla, xolo, bfp, nubian, oso raro, fab, sonrisa, la brown girl, and bint alshama for your many good vibes, prayers, candles, etc.

The courage is all on L*’s part for posting about all this. I would’ve just quietly faded away, because the story was hers and it seemed too much to share. She asked me to post it, and I’m just so grateful for all the love.

I’m making holy candles to Santa Agatha, St Mary of Egypt, Jeanne D’Arc la travestí, Coyolxauhqui, and of course La Virgen de Guadalupe. If you have your own holy helpers, please put in a good word for L*.

L*’s parents are driving up from the Foggy Place to stay in a hotel near Major University Medical Center so they can be on hand Friday a.m.

L* will be staying the night at MUMC, and I’m hoping they’ll let me stay with her.

Right now I feel like running around como una gallina degollada, but I have to finish grading exams so I can turn them in before we kick into high gear.

A long entry

On Thursday, May 11, L* went in for a mammogram and ultrasound.

They took her in pretty quickly--which had been my experience too when I’d gone for my own mammogram, except I’d come after dark--which was very weird and felt like some kind of black market mammogram cash under the table kind of thing. But here in the daylight it was full of people.

While I sat there the people who had been waiting for their partners, friends, wives, met the ladies on the way out. More people came in. I steady stream of young women of color who had to be directed further down the hall (i think where they did pre-natal ultrasound). An older lady (looked like a lesbian) brought in her older lady, whom she had to help a lot. When they came back out and left, I realized that everyone who had come in before and most who had come in since they’d taken L* away had already left.

She’d been gone a while. I kept on praying, crocheting, and trying not to think. Then at last she walked in with an attendant. My head was saying “at last! I was starting to worry” but before that came out of my mouth i saw her face and caught my breath. She looked very serious, and while the attendant was checking to see that the person she needed to schedule with was already helping someone else, L* flashed me the piece of paper she was holding, that said core biopsy.

She scheduled the biopsy for Tuesday morning, May 16th.

She said that the mammogram, as usual had shown nothing, but that the ultrasound showed something, and that the tech called in a doctor to talk to her, and he was very, very serious.

We wandered a bit the rest of the day. Shopping at Ikea, going to the bookstore to get the new edition of the Susan Love book. Went to LIttle Shin Shin for a nice dinner.

When we went to bed we were able to talk more. She’s scared because she doesn’t know what else it could be besides “the worst.” I’m trying not to think ahead: there’s nothing we can do until we know more (two days after the biopsy).

After L* fell asleep, I got up again and got up to read about the different kinds of lumps a lump can be. It wasn’t especially encouraging. If it were a fibroadenoma that would be okay (benign).

On May 16, we went in for the ultrasound.

Unlike the mammogram, when I was out in the waiting area, they let me come back with L* during the procedure. The radiologist was warm, friendly, and positive. He inserted a needle about the size of the refill for a ball point pen to take the samples. he said he was taking five, but neither of us kept count. The procedure was ultrasound guided, so there was a woman moving the ultrasound wand over while the guy did the procedure. I could see the screen for the ultrasound, but as usual didn’t know what I was seeing. I didn’t know where to look, so as far as I could tell, we could have been looking for oil under the earth’s surface or at a fetus. (this is me distancing)

They emphasize that it will take at least two days to get the results. What she can take for the pain.

On May 17 L* receives a phone call from her ob/gyn, saying the biopsy showed malignancy.

I should mention that L* has never seen her ob/gyn. She’d set up an appointment months ago for her annual exam and so she could get a referral for a mammogram and ultrasound. Then days before the appointment, the dr.s office called to cancel. They rescheduled for several weeks later. Again, the day before the appointment, they called to cancel and reschedule. L* had had enough and demanded that she at least be able to see a nurse practitioner, since she’d already waited so long. She liked the RNP who was very helpful, gave the referral so that L* could get the tests she needed done.

So now, this dr, whom L* has never met or talked to is calling her to tell her she has cancer.
The dr. will refer her to a breast surgeon, whom she names.

L* is in her office, preparing for her afternoon class.

She calls to tell me, and I am silent at the other end of the phone. We don’t know what to do. Finally, we agree that I’ll BART over to Hayward to be with L*. I try to distance by focusing on “what I can do”: should I get more books before I come? L* tells me she doesn’t need a Research Assistant: she needs a partner.

While I’m on public transportation, L* contacts one of her colleagues who’s a breast cancer survivor. The colleague had been treated by the breast surgeon that L*’s ob/gyn had named, and had a good experience with her.

When I get to L*’s office, she’s having office hours and students are coming by to meet with her.

The ob/gyn calls back to say that the breast surgeon isn’t in L*’s HMO, and so refers her to someone else.

This is our first inkling of the whole insurance/HMO/medical group thing.

I spend part of the time looking up specialists in our HMO as well as the medical group in which “the good breast surgeon” is. I call our insurance and change my primary care physician to a doctor in “the good breast surgeon’s” medical group, to see how difficult it is and when it would take effect (June 1).

It’s just before 6 when I leave her. She can’t face eating. L* goes on to teach her evening class. I drive home and straighten up the house--we have a houseguest coming tonight--and get some bread, avocado, and cheese for L*’s late supper. Then I pick L* up from campus. Our houseguest arrives, we spend some time talking. When I’m in the bath, L* tells her about the diagnosis.

On May 18, in the morning, we have an appointment with a different surgeon, one who is in L’s medical group.
An otherwise likeable white guy, he actually said to her "you're a testament to self examination" because she was able to identify
the tumor and get it checked out.  L*'s response is, "no, I'm a testament to why self-examination doesn't work" [pendejo!]
She's been having mammograms roughly every other year since she was thirty.

She's really articulate about what she wants in her treatment: she wants a double mastectomy. She gave that surgeon a run for his money when she told him that: "lots of lesbians are transitioning to men" she told him and you could just see the wheels spinning in his head as he tried to catch up.

I actually tried to talk her into another way of saying it and she was just NO WAY, let them educate themself, I’m not going to fulfill someone else’s fantasy of what I should want...

I so adore her!

I'm praying a lot. Not like I usually pray, with lots of candle, ritual, rosaries, altar. Just quietly.

She's strong and brave during the day.  Sometimes she starts trembling.  At night I hold her. Sometimes she's cold, sometimes she weeps.

After the appointment, L* calls her parents to tell them the results of the biopsy.

I call my family later, in the evening. I talk to my mom and my sister, who are both stunned. My sister tells me I will have to be strong for L*.

Friday, May 19th is spent mostly on the telephone, trying to get an appointment at Major University Medical Center (MUMC), trying to get an appointment with “the good breast surgeon,” scheduling an appointment with an oncologist (Monday May 22). Trying to find out till when L* can change her primary care physician to a different medical group.

The weekend is very long. L* distracts herself with a project. Last week she had found a old nightstand for free on the side of the road. Now she sands it, primes it, paints it, and distresses it. She paints the body teal with the drawer and the open area a sort of granny smith green. Our houseguest contacts other friends she can stay with ‘cause she knows L* and I need some time and quiet.

May 22

I honestly don't know how to feel about anything right now. Maybe that means I've switched my emotions off and am focusing on what needs to be done, on how to care for L* (how to show her love and nurturing), on scheduling and getting more information.

I think I'm afraid to feel.  She asked me the night of the biopsy (before we had results) what I feel and I feel like there's a big hole that I could just fall down and disappear... but that really, there's too much for me to do, either to think about that or to fall down.

Several of our friends have told L* how pissed off they are, how angry.  

The appointment with the oncologist is both helpful and baffling. She’s very sympathetic. Once again she advises lumpectomy and L* explains that would not be her preference. It’s a painful conversation. We’re starting to get a sense that the trend in medical treatment is away from mastectomy and toward lumpectomy, preserving the breast which is so essential to woman’s identity. So L* is going against the current. In fact we realize that the whole reason for this appointment is that the first surgeon is nervous with L*’s stated choice and wants to make sure that a woman doctor thinks she’s making a rational choice.

L* talks to her dad, who’s a prostate cancer survivor and patient advocate. He’s been seeing a specialist at Major University Medical Center, where he’s been part of one clinical trial and is starting another. She tells him how she’s tried to schedule at MUMC but been so far unsuccessful.

When we return from the oncologist appointment, L gets a phone call from the office of breast surgeon #2 (who was formerly in practice with “the good breast surgeon” but who IS in L*’s current HMO) asking why she missed her appointment. Apparently the ob/gyn’s office had scheduled L* with a consultation with breast surgeon #2, but no one had informed L*. Because we really want to see this other surgeon, L* reschedules an appointment for Wednesday.

This is the first time we’ve actually seen the breast center that our HMO is affiliated with. It’s a bit overwhelming, seeing all the women who are in the chemo and radiation stage.

On her voice mail is an message from Major University Medical Center, saying they could schedule her for an appointment today (the same time as the oncologist appointment) or on June 6th, which seems a long time away. L* continues playing phone tag with Major University Medical Center (MUMC).

Is it Tuesday already? L*’s dad calls her up and tells her to call C* at MUMC, whom he’s just had a long conversation with. L* has been playing phone tag with this woman C* who schedules new patients. C* calls her back and, lo and behold, L* has an appointment with a breast surgeon there on Friday. Way to go L*’s dad!

L* goes the Women’s Cancer Resource Center here in Oakland/Berkeley (almost literally across the street from the imaging center where L* had her mammography) They’re very helpful and sympathetic, L* talks with a Latina there. Their actual resources seem somewhat slim.

L* also goes to the imaging center to pick up the slides for her biopsy, to take to MUMC.

May 24, Wednesday, is the appointment with surgeon #2 (who’s a surgical oncologist). She examines L* and uses the ultrasound that she has there in the examination room. Shows L* that the lump is surrounded by cysts. Comments that a cyst in the other breast is so large it’s like a lake. She starts the same lumpectomy spiel that we’re beginning to know very well, and L* tells her own plan for surgery without reconstruction.

Thursday, May 25th, we drive to Major University Medical Center to take the slides to the breast center before our appointment on Friday. Our yahoo directions are kind of on crack, but we do find it. L* meets C* the Latina she’s been speaking with on the phone, who is just so warm and generous. She helps us find a primary care physician in case L* decides to change her insurance over so that she can get treatment at MUMC. The breast center itself has a really nice atmosphere.

We cross the street to the women’s health center and L* explains she’s interested in changing her primary care physician and asks which doctors are accepting new patients. The guy there is muy bien helpful, and names several of their physicians who are all accepting new patients. He explains that downstairs there are brochures that give bios on all the patients. We take business cards and return home to look them up on the internet. I change my primary care physician again, to see how easy it is. I’m able to do this online right away.

Friday is our appointment with Dr.H, the breast surgeon at the Major University Medical Center breast center.
We have to wait a REALLY LONG TIME to get in, and I am actually quite beside myself. Dr. H is great, though. Woman of Color. Examines L*. Identifies the lump on the right side. Like the other surgeon, she’s really amazed at all the “other stuff” going on the on the left side. L* says surgeon #2 described a cyst on that side as “like a lake.” “Like the Great Lakes” Dr H responds, describing all the cysts going on there. Begins the lumpectomy spiel again, and L interrupts her. Dr H says “I think I know where this is going.” Turns out she has several patients who have chosen mastectomies with no reconstruction, as well as those who have reconstruction with a more “android” look.

Dr. H has published a lot on breast cancer. We come home decided that MUMC is where L* wants treatment.
On the drive home, L spots an end table on the curbside. “Do you think it’s free?” We drive around the block, I park, and L* goes to get the table. She comes back with her arms full and a big grin. “Check it out!” the table is a Heywood-Wakefield and goes perfectly with our dining room table. This we take as a positive sign.

L* changes her primary care physician on Friday afternoon, so that she can go to Major University Medical Center.
That brings us to the long weekend to today. L* is working hard to try to get on Dr.H’s surgery schedule within the next two and a half weeks. Right now L* is calling to get her mammograms from 2 years ago when she was in DC.

A chilly day back in the bay

Yesterday L* and I were drinking coffee on the deck, in the sunshine at 9 am, and I realized that a year ago I was fantasizing that we would have such a life!

Sunshine this last week has been quite dazzling.
I got sunburned twice . I’m absurdly pleased about this because I’m once again in the land where el sol has some Power!
(The only time I got sunburned in Ohio, It was in an electronic booth and I paid for the privilege!)

Today, though, it was cold and grey. Brrrr!

I’m off to the little Mexican Market on the the corner (Mi Ranchito which was--you guessed it!--closed on May 1).

My entire department is coming over to my house tomorrow and I want to have platters of fresh fruits and veggies a la mexicana to munch on (jicama, mango, papaya, pepino, et cetera with limon and pico de gallo)

I hope the sun comes back out so we can have our meetings on the deck.

May 1: A Day Without an Immigrant

Today's my dad's birthday, so I phone him at 9am and sing Las Mañanitas to him. I tell him we're going to the demonstration and he says for L* and I to leave a little space next to us and pretend he's right there with us.

Fruitvale, (10:00 am) no parking anywhere near the BART. We see all the Latinos in white and wonder if they're going to San Francisco or demonstrating here in Oakland. (Oakland: they marched up International)

Embarcadero!

(11:00 am)
incredible!

there are thousands and thousands and thousands of people here.


The Oakland Tribune has a pretty nice slideshow. (turn on the captions)

CNN coverage was so disappointing. (Hateful). Yeah, let's have the MinuteMen founder give us hist take on this. No Maria Hinojosa, no doubt because she was out there doing it.

Exception: from Nancy Grace, of all people!

How Lou Dobbs can say no to this little girl, I don`t know.