sábado, septiembre 09, 2006

Week 2, cycle 3 (3.2)

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

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

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

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

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

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

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

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

L* also has an acupuncture appointment the same day.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That was our week!

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

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

5 comentarios:

brownfemipower dijo...

Good GOD Ktrion and L!!!!!! What a fucked up miserable situation!!!! and please tell me HOW "i'm having an allergic reaction please help me" get turned into "you can't handle chemo, we're stopping treatment!" WTF????

oooh, this is making me so fucking angry. Thank god you have L's parents...we're talking on a couple of our blogs (mine, feministe, and a couple others) about how woc and trans people are f-ed so hard by the health care system in large part because they can't or don't know how to speak the middle-class lingo (don't get angry, don't show emotion, use big words, ask to speak to supervisors etc)...It's making me think of your situation--you are college educated professional and they are *still* treating you like shit! This whole health industrial complex needs to be dismantled and rebuilt...

hang tough mujeres...

Cracked Chancla dijo...

gee, could i ever feel your frustration. the healthcare system can be so cold and sterile, i cannot believe they were that insensitive towards your needs. time and again my doctors seem annoyed that i have questions for them regarding what i researched online--is it resentment because one is doing their homework and not as gullable as they would like us to be? be strong and hang in there. ask your angels for strength, to make your health care providers more understanding, and to make the healing process for l and ktrion easier. i'm sending healing vibes your way.

Blackamazon dijo...

* so mucg love i hope yyou feel it and it knocks you over*

Jesus crust the stupid I cant even think to respond

shira dijo...

Hi, I found this through Carnival of Feminists. I just wanted to say that I have chronic hives, and nothing (claritin, atarax, oatmeal baths, hydrocortisone, predisone) worked for me except benadryl, which only worked temporarily, except zyrtec, one pill a day with no noticeable side-effects (like drowsiness). If the steroids don't work, you might want to try that. I had to go through four doctors before one even suggested it.

butterflies and blades dijo...

i love you two. i want to hug you both, and then each of you, and then both of you. and i'll be able to, soon, if you want a visitor while i'm at ASA. will email you about this. keep hanging strong.