Tuesday, July 28, 2009

I lay mostly in my garden room now. Today, it is extremely hot and I can hear my daughter squelch scream laughing through the french doors and someone washing the dishes
through the door in the other room. For a few minutes, I pretend I have the flu.

My back hurts and I am unable to walk on my own. Apparently the nerve block didn't work. Nor did the cisplatin or bevacizameb or green juice or radiation therapy, or massage or acupuncture or 5 mushroom formula, because it seems my bones hurt, my back and side ribs hurt, and walking looks more like collapsing.

Am I complaining? Hells no. Well maybe a little bit, but the thing is: 1) Besides my usual badass community of support, my entire immediate family is here to rally around me. and 2) I still have my wits about me more ore less. Yes - I could still fight. I could get myself a wheelchair and pretty soon some oxygen tanks and tubes and read and read about how to beat this. But the thing is, it's time for me to make peace. It's time for me to admit to myself that everyday the Pain is getting worse.

I like my garden room. I remember painting it (mosaic green) with my friend Kathy while I was about 6 months pregnant { I had a mask on.) (eco paint, ok?). we were laughing a lot because we are idiot painters, but then for some reason when Bron Y Aur from Physical Graffiti came on, I started to cry silently. It might have been the first time I had ever cried actual tears "of joy".

We moved Luka's room upstairs about 2 years ago, and now the mosaic green room has French Doors, that lead out to a pretty back porch (built by Frank Camp and Aaron Beam and my husband), which leads out to 1/3 acre of pretty gardeny joyousness.

Every few days, my dear friends Kathy and Thandi wash my body with soft cloths and peppermint soap. They did some research and found that babyoil in the wash cloth moistens the skin enough to make it less sensitive to touch. It works. My naturopath, Molly O'Neill, comes to this room to give me acupuncture and I am lucky enough to have two friend massues, willing to enchant the garden room with their magic Pain relieving skills, Danielle Lanier, and Ana Helena DeCastro (who insisted on coming and doing some work on my family and friends who have been busy bees around the house and who's homemade cottonseed oil probably works even better than baby oil so maybe we should try . My Dad brought me a Hot Fudge Sundae from Dairy Queen.

I'm not trying to boast (again) about all of the great friends and family I have. It's just time to let go of the Pain. It's time to teach my daughter the beauty and strength in surrender; it's time to show her the absolute courage it takes to fight with all the power you have and then realize the
Pain is not going to stop until you give it the word.

My beloved bathers, my massues, my acupuncturists (thank you Tom at IEP as well); they cannot stop my furious cancer, but they can help me fight this enveloping Pain.

And when the Pain is gone, I can hear endless belly laughs on the porch and pretty music in the far off distance.

Monday, July 20, 2009

sum sum summertime

Who doesn't love summer time? Well, there must be some people, some lovers of the brightly colored leaf, the frosty cold. But here's me - a summer fan. I like how it smells - all cut grass and breezy; flower-drenched. I like the green trees and sun and all that, too. I have a summer birthday; I like presents and parties. But I think the biggest draw has always been the sense of freedom summer brings. No jacket, no school, Ghost in the Graveyard till 10 at night,
no storm windows. I really like screen doors.

When I was ten, summer meant riding our bikes to Rainbow Park with sack lunches tied to our backs, our tires wobbly on the dirt trail by the chain link fence where that one stinkin dog always barked and tried to get our pedals. We (we being me, my sister Angie and usually one or two of our neighborhood friends) threw down our bikes at the big meadowy hill and chowed sandwiches and Capri Sun. Then I think we played tetherball, but I might be wrong about this.

We returned home sweaty and tired, having raced on the way home, with Cindy Smith trying to win by doing that bobbing thing up the hills. Our kickstands melted into the asphalt of the driveway (the next day my brother would measure the depth of the kickstand hole and compare it to previous days). We stuck our heads in the freezer until our mom yelled at us to get out of the kitchen while she tried to make Beef Stoganoff in the electric skillet.

I went to bed sweaty again, probably, but happy knowing that we could do the very exact thing tomorrow if we wanted to.

Growing older, of course, brings more responsibility and perhaps less freedom, but summer always has has that free edge. Margaritas with dinner outside on a patio, camping in the middle of some woods right next to your car, no jacket, swimming, popsicles in the middle of the day. Screen doors.

Dare I complain from my beautiful little garden room? Dare I open the pretty french doors and scream bloody murder?

I am attached to a pain pump and a catheter which drains my left lung. And I just want to go swimming. A long fast swim like at swim team in 7th grade. A 20 foot deep bottom search at Lannon Quarry where I was a lifeguard and swim instructor with pretty pink lungs and a whistle. A leisurely sidestroke with my Gramma in her inground pool (pick the apple, put it in the basket; pick the apple, put it in the basket). A crazy handholding bobjumping headgoinunder with my daughter, Luka, as we swam around Creston Pool. Mama and Baby Fish.

Pull this stuff out of me so I can go swimming. Enough with the hurrah I'm brave. They better make some seriously good margaritas in whatever afterlife I'm set for.

Tomorrow, I will find some kombucha to drink, have a massage and resched. my appointment witth my Chinese herb practitioner.
But today, folks, I am screaming bloody murder.

Sunday, July 5, 2009


Asparagus Therapy is 4 tablespoons of cooked blenderized asparagus 2x per day for three months. When I told my hospice nurse, Beau, about it today he said, Hell I'd try that too.
It turns out that Beau is the second half of BeauJo, as in BeauJo's pizza in Colorado. Jo is his wife. They owned the little pizza joint for years and then sold it to some younger kid. I ate there when I lived in Fort Collins. I asked Beau if he ever made the pizza at home anymore and he said Sometimes. He laughed. It's pretty good pizzza.
The he changed the dressing on my Pic line IV site and helped me drain my PleurX catheter.

I was in the hospital for about 11 days. I contemplated staying there. Burrowing into the manual hospital bed and gluing my hand to the remote control so I could watch the Lifetime channel and new shows about gymnasts the whole day through. It seemed like it could go down this way, with me just melting into the weird white sheets and the bally textured blanket.
But it turned out I missed my stuff. I missed the little herbs I had just planted in old kitchen drawers and I missed my little daughter's feet barrelling out onto the backporch, jumprope dragging along. I missed my husband's look of exasperation.
Deciding that though the immunotherapy didn't seem to be working and though my body was too weak for any more chemO that probably wouldn't work any, that I could still be Hopeful. That I had some writing and teaching left to do and that I couldn't teach my daughter anything with my hand stuck to the remote at the Hospital. And that it was weird and kind of awful being constantly around these people who stick needles in me and ask me constantly How's yer Pain? and give me advice bout moving my bowels, these people who I Don't Know who are possibly getting to see the last glimpses of me. Having decided all these things, I discovered I could still be Hopeful.
I could try Asparagus Therapy and Go Home.

So here I am in the little Garden Room, looking out into my backyard. We had friends down from Seattle this weekend. For several past years, we have spent time watching fireworks on the pier of Jami's folks lake house. Jens and Scott spent good amounts of time at Boom City picking out a plethera of dynamic fireworks to dazzle us with. Upon arriving back, they would find the kids running around with sweatshirts over bathing suits, hairtips still wet from the day, and marshmallow sticks in hands. Us with vodka frescas and blankets ready in big chairs. Then off the show would go on the pier - big booms and sprays with a backdrop of fireworks shows from all over the lake.
This year was different. Jens and Jami and Marley came down here. They did get to see some fireworks at Mt. Tabor, but nothing like the display on the pier from Boom City.
I listened to the fireworks from my Garden Room.
But because of all of the love around here - the visitors and nonstop parade of sheer love (as cheesy as it sounds) - I did not feel left out.
As Luka ran out the door and tossed back a quick Bye Mom quite hurriedly, I did not panic. I turned to my little notebook and thought about all of the things I could still teach her. I washed up and hung a new piece of art to look at in the Garden Room with my two savior girlfriends.
I am making peace. I am making it work. I am hopeful.
I am eating 4 tbs of asparagus 2x per day and visualizing Boom City Fireworks next year on the pier.
I am not giving up.