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!