We're just taking each day as it comes.
At first I kept thinking there would be a clear progress--L* would feel progressively better everyday. But the reason chemo works is that it goes through your whole system and kills off all these fast growing cells. So then there's these periods of suddenly more aches, suddenly more symptoms when she felt better the day before. Last week there were a lot of symptoms, including gastrointestinal woes at both ends of the extreme, really devastating fatigue, deep body aches, and a lot of sneezing which has now turned into congestion.
I do think L* is keeping a great attitude, and really trying to just be patient with herself.
Thursday I come home from doing some shopping The house is quiet so I assume L* is out on the deck or in the garden, but I don't see her there. I I call out "are you inside?" and her little voice calls out "yes." At this point, I notice that the bedroom door is closed, and that a heavy duty extension cord plugged into the kitchen outlet disappears into the bedroom. Uh-oh. What am I interrupting?
"You can come in" she says. I open the door carefully to see find two space heaters set up with a yoga mat between them. L*'s laptop is on the dresser, playing the cd of Bikram's beginning yoga class. hijole! what a woman!
Then she explains that she had planned to do yoga in her study at the front of the house, but when she plugged in the two heaters, the fuse blew. So we currently have no internet, no tv, no nada. (grin!) I get this all up and running again. She says "You leave and the whole house goes all to hell!"
Friday was a rough day. L*'s been decreasing her nausea meds so that she's not in a hazy fog and can do things, but the downside is that her nausea is back and strong. She's a pretty assertive little guy! So right now it prob'ly feels like a step back for her, 'cause we did go back and increase the meds.
Saturday night she woke up with aches and nausea at about 2 a.m. She took her medicines right away, but then needed
to take her mind off her symptoms so the medicines could get to work. So we played Scrabble. And we didn't keep score, so it was very fun. Then when she was all relaxed, we went back to sleep. (We bought a travel scrabble set, for when we go to the hospital and stuff. the tiles lock into place on the board so you can pick it up and turn it around)
Hey, I made rice pudding for the first time Saturday. (L* usually makes it). Except the recipe was kind of big and now we still have lots and lots left. (I never used to like rice pudding but now I'm getting older I like all those things).
Sunday we went for a little bitty hike up the creek, and then sat and played cards, and then L* laid down for a while, and then we came home. For dinner we had udon noodles with stir fry: L* did the stir-frying.
Forty-nine days since her brother T*s death. L* served him a bowl of noodle and stir fry, arranged a place setting like an altar, with roses, candles, sage, and an origami swan.
Also, L* has been making origami swans to welcome back the spirits of the night. She hung them in the corner of the bedroom.
L*’s mom brought her non-cheddar goldfish crackers and they are a big hit.
lunes, julio 31, 2006
We're just taking each day as it comes.
Posted by Ktrion at 9:06 a. m.
lunes, julio 24, 2006
I honestly don't know if I'll be able to keep blogging. When things are bad, it's too hard to write about. When they get better, putting them into words seems to minimize what's actually going on.
L* had her first chemotherapy treatment a week ago today (Monday). It's been a week of fevers, nausea, restlessness, exhaustion, deep body aches, and tears. Emotionally L* is very fragile. On Monday, when we got back from her treatment, she was mourning her brother, who otherwise would've been calling to see how she's dealing with the treatment.
It's a hard row to hoe.
Saturday L* got her hair cut very short, and Sunday night we smudged her in the four directions in the names of Guadalupe, Coyolxauhqui, Coatlicue, and Tonantzin.
On a good morning, breakfast is a kiwi fruit and an almond. Poached pears have also been very well-received.
The worst was definitely the trip to the emergency room on Tuesday evening with a temperature of 101 degrees. Yeah, with a compromised immune system an urban ER is definitely a very scary place.
On the bright side and the funny side--and she always seems to be able to find these--L*'s passionate "hobby"** of avian flu preparedness has been a godsend. Who else would have on hand the N65 respiratory masks? Of course, we now know that chemotherapy patients should always wear such masks if they have to go to the ER, but did anyone tell us this beforehand? No. But as I said, my baby's bird flu preparedness is coming in very handy.
** bird flu as a "hobby." I tried explaining this to my friend A Sue* several months back:
A Sue: What do you mean she has a bird flu hobby? You mean, like an obsession?
Ktrion: One could call it an obsession. But I prefer to call it a hobby.
We spent a lot of time last week trying to get a hold of the nurses and nurse practioners at MUMC. Which was a lot more difficult than we'd anticipated (Hey, I thought we were a TEAM!). Our pharmacist is a life saver.
Oh, and a rather trivial thing in comparison to everything else is that my laptop is out of commission. Something to do with the place where the power cord goes it. It's still under warranty, and I should have it back in a week or so. What that means here and now is that I don't have handy those great quotes from Linda Hogan's The Woman Who Watches Over the World, that I wrote in my (computer) journal weeks and weeks ago.
ALTAR: a very warm thanks to la gran Chicana de Chicanas.com, who sent a cazita with polvo de Chimayó, from her altar to ours. L* had dismantled the surgery altar a while back, and last Sunday, she built a new chemo altar. (foto forthcoming).
ORIGAMI: we are making little swans. L* wants to hang them in the bedroom, with light catchers, beads, and prisms, to bring back her protective spirits.
CROCHET: I finished off the batch of yarn that had arrived and the baby blanket still was not finished. Ordered more and worked it in, and am now finishing off the ruffle. The baby is due today. I also started a prayer shawl for L*, which is currently filled with Ave Marias.
TV: We're watching the first season of LOST. L* has the same haircut as Jack, and she keeps tugging on it to see if it's still anchored.
HOUSE: the landlord is himself a cancer survivor. I hope that he's put off making a decision on the house until after L* finishes chemo.
L* and I went to Tai Chi class on Saturday a.m.--her first excursion out of the house. Yesterday her parents drove up from the foggy place, with gentle soups, ginger ale, fruits, and graham crackers.
This morning, since we were up early, before the sun cleared the hills, we took a walk around our neighborhood. She got a lot of ideas from people's gardens, and also scored a cluster of succulents (chicks and hen)
Posted by Ktrion at 10:59 a. m.
lunes, julio 10, 2006
We just got home from the oncologist’s office. L* has already changed out of her dress shirt and into some comfy sweatpants and her La Llorona t-shirt. She’s also talked on the phone to friends (Hi Julien!), a nurse, her mom and her dad. Is still on the phone with her dad, going over all the names of drugs with him.
The Oncotype DX Assay (which was not paid for by the insurance) finally came in
L*’s prognosis with tamoxifen-only is good but would be significantly better with chemotherapy followed by tamoxifen , which is what L* has chosen.
They don’t think she needs a port (basically an IV entry point in her chest for the duration of chemo treatment), because she has good veins. (The oncology nurse advised: No coffee on the morning of chemo).
She’ll be starting chemotherapy (Taxotere and Cytoxin) next Monday, will have treatment every three weeks for four cycles (i.e. July 17, August 8, August 28, and September 18). The night before and morning of treatment, she’ll be taking steriods. The day after treatment, she’ll go in again for a white blood cell booster called Neulasta (may our insurance company cover it!)
So L* will be done with chemo and feeling more or less back to normal the second week of October.
Ktrion’s fall quarter starts August 29th, and L*s fall semester starts September 27.
Tomorrow, L* has a consultation at the Center for Integrative Medicine about complementary therapies (in Traditional Chinese Medicine, for example).
The yarn arrived this morning for the baby blanket.
The landlord has not yet decided about selling the house.
Posted by Ktrion at 3:21 p. m.
domingo, julio 09, 2006
Today L* and I are going to clean the house very thoroughly.
tomorrow we have a meeting with her oncologist, and L* will prob'ly be making a decision about chemotherapy.
That may mean she'll get a port put in tomorrow and start chemotherapy on Tuesday.
Thus it's important that we can come home to a very clean and peaceful house tomorrow.
We went to our first Tai Chi class yesterday and it was GREAT
One of the things we'll find out from the onocologist is the results of her Oncotype DX assay. These will categorize her risk of recurrence without chemo as Low, Intermediate, or High. Pretty sure that for either intermediate or high she will choose chemotherapy.
She's working in her garden right now. We got a patio umbrella so that she can hang out there and enjoy it without getting too much sun.
We’re still drinking lots of delicious green “republic of tea” tea.
I am eagerly awaiting a small shipment of yarn. children complicate knitting and crocheting.
I was working on Baby *zia's blanket about 2 months ago at our friend J*’s house. J*’s six year-old son and his friend started playing with one of the balls of yarn, and then next thing I knew, the whole living room looked like a game of "cat's cradle" gone awry. I let them keep that ball of yarn. (They’re good little guys! I’ve crocheted them both skully caps)
Then, two weeks ago, I ran out of the yarn to finish *zia's blanket. (Ay!). I found the right yarn on the internet but the service has been muy pokey. They finally shipped it on Monday, so I keep watching for it every day. (except today)
Our friend El Paso offered us a good deal on her new juicer. I don't think we're ready to commit to that yet, 'cause we're just getting started with the traditional chinese medicine thing, which is all about no raw foods. I was really tempted,
though, because L*s youngest brother has had a juicer for about a month, and he swears by it, and made us a lovely gazpacho when we saw him two weekend ago.
We finally watched Almodovar's All about my mother. LOVED IT! oh, my gosh, what a great movie. makes me want to write more and more and more. penelope cruz was sporting a particularly lovely crocheted shawl :)
Posted by Ktrion at 9:31 a. m.
jueves, julio 06, 2006
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.
Posted by Ktrion at 8:53 a. m.