martes, mayo 30, 2006

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.

12 comentarios:

Cracked Chancla dijo...

suerte for you and L. i'll be sending good vibes your way.

Xolo dijo...

My thoughts are with you and L*.

My mom went through all that several years ago. Fortunately, everything was caught early and she is living a very fulfilling life. Like L* she wanted a masectomy instead of the lumpectomy (and got it).

It is good to have strong advocates when going through all of this and it sounds as if you do. Moreover, kudos to you and L* for doing your homework and finding the specialists that your are comfortable with.

Last, L* is very fortunate to have a caring, intelligent, and strong partner like you. Remember to give yourself time and space to deal with this too.

brownfemipower dijo...

girl, i'm loving you and L* so strong right now--thank you so much for posting this, and i hope that you continue to post--you have given me valuable information on how to help me and my chicana body navigate the health system.

most importantly, tho, please please hold L* extra special close for me--give her a chicana hug--deep, tender and warm...


nubian dijo...

i send you so, so many good vibes.

Oso Raro dijo...

Muy fuerte. Gracias por tu honesty y sharing.

Cariño, mi amor, a las dos.

fiercelyfab dijo...

ay mujer--this was a heart wrenching entry pero a la vez fierce as it can get, un abrazo fuerte to you and your loved one.

sonrisa morena dijo...

les mando un huuuuge loving hug to you and L...

La Brown Girl dijo...

Lighting a candle for you guys.

fiercelyfab dijo...

K-trion, didn't know how to approach you considering the sensitivity of the situation but I thought this is a great entry on dealing with the system, survival as a queer woman of color y having a partner dealing with such a strong and powerful entry and invaluable details of information. I wanted to see if I could link this entry to the radical WoC carnival, but I understand you're going through stressful times and respect your response.

sokari dijo...

Dear sister, I hear you on this. I went through a similiar journey of pain 5 years ago and similiarly i chose the option that went against the doctors assumed wisdom. In my case I chose not to have a reconstruction which the doctors and nursing staff just could not deal with. They tried everything but I was insistent. Then there is the additional issue for the medical profession of being women of color and lesbians and radical at that - I found myself refusing or rather being unable to go along with the whole charade that "it will be ok" because for me it wasnt bloody ok and I was angry that I was expected to be thankful that I was not dying but "only" loosing a breast which i could afterall "replace". It was a hard really hard just thinking about it - but I got through it as you do but I dont want anyone to take my anger about breast cancer and the way we are treated away - dont let them get you. Every time I hear of another woman with this awful illness my own memories flood back. I wish I could hold you. The fear the pain we have to endure I can only say you are in my thoughts at this time.
I wrote a piece about it on my blog if you want to read it - Love each other and hold on to your thoughts and feelings. A big hug to you both.

Kilimanjaro: High and Lo dijo...

hugging you and L* tightly

RAW dijo...

I'm sending you love and a belief in your power, L*, to make a new, beautiful, free body.

As always, you inspire me to think about how I can take charge of my own health.

Love to you both. I'll see you in a few months.