Archive for December, 2011
You ask, what’s the deal with Pasadena?
Well, that’s just short hand for saying “The Next Step.” I hope to get a Cure, yes Cure from a blood cell transplant at the City of Hope in Duarte, CA. Since most folks haven’t heard of Duarte I usually just say Pasadena. My chemo now is the price I pay to shrink the tumor(s) down to the level that C.O.H. requires for me to enter their transplant program.
Dad and I went down there in September to check out the place (pictures).
When? I don’t know. After my next, as yet unscheduled, CT Scan.
How long? They say 90 to 100 days. Yes, a mighty bite out of 2012.
What are the odds? I’m way off charts now. Nobody knows. My best shot.
How? They have two baby stem cells packs waiting for me. They extract it from umbilical cords.
Why? Some people get cured! I want that.
While many people are admiring their Christmas cards, full of hostile weather and haunting snow golems, and going for a sweater… I admire mine and consider a tropical drink.
Some conspiratorial types sent me over two dozen postcards from Florida, somewhere hosting a half marathon. TNT (Team in Training) encompasses some crazy people who run and walk for fun all day after weeks of fundraising for the Leukemia and Lymphoma Society. And they sweat in the honor of loved ones. Take that, elves!
I’m very suspicious of one cult leader, Carol.
The atrocious stick figure art does put a tickle in my mind… maybe join TNT some day. Gonna need a full set of red cells for that.
Here’s the drugs from the DHAP protocol I’m on. Three day infusion every four weeks.
Cisplatin – alkylating agent.
Cytarabine – antimetabolite.
I wake up gagging, grab a protein bar from bedside and dash to zofran.
Doing the chemo dance.
I’m hot while I’m cold and I’m hungry while I’m full. My feet are puffy and my mouth is dry.
Doing the chemo dance.
My energy is good, my balance poor. The drugs effect rise daily for a week and slowly dissipate. But I know their steps and turns.
Doing the chemo dance.
I could smoke, I could pop the vicodin, but I’d rather tough it out and keep my mind clean.
Doing the chemo dance.
By Christmas Day I should start to feel good. That would be a great gift.
Ending the chemo dance.
Since I’ve been up, many visitors and three sets of caretakers. Here’s a sample of my guests.
I love how Lucas plays drums. He really bangs it out.
Shawn (dig the beard!), Quinn and Daniel graduated from Mission Prep a few years ago.
Claudia came down from Santa Cruz while Oliver hails from Oakland. Bill lives in San Francisco and the Melton’s are from Tacoma, WA.
Lord, if they would just let me sleep. With earplugs and some bad attitude, I got most of the hours tween four am and nine thirty am.
Fluids, vital taking, pills.
Overall, a great experience here at French Hospital. My own room is a huge gift for sound (my own) and noise (the lack of a room mate) though the mowed the lawn at eight freakin’ am the first day right outside my window. The view is a tall wall but one covered with murals of mountains, horses and butterflies.
I seem to have the perfect number of visitors, balanced with time to read Jon Ronson’s “The Psychopath Teset”, my usual array of blogs and some editing of a audio recording of a party that I’m finding poem and funny quote gems among 145 minutes of ore. The party, Gizmulp, is an alternative to Chirstmas and features handmade gifts, citrus and silliness.
The staff here at CHW French makes me comfortable from admitting through nursing to housekeeping. Real pros and real people. Three days to drip all the chemo into me. Now I enter the phase where I gag when hungry or cold and feel pretty lousy. Music doesn’t sound as fine, the flowers aren’t as cheerful, food is distorted and a bit of a nuisance, my skin has an odd smell. I should pop out of the grey around Christmas for which I am already grateful for that timing.
Onward to Pasadena!
Everyday lasts a little longer and everyday I feel a bit more stronger.
The healing proceeds on many levels.
Friends came today and eroded a mountain of possessions on my back deck, from under a tarp, into a tide of crap into piles of save, cycle and sell. Goodbye baggage goodbye and some treasures found. More friends visited including the honourable shoosh yoga teacher, friend and advocate.
Pulled by Claudia’s powerful listening, today a reading of my vow released a good sob and unbridled laughter. If you know the laughing-crying buddha statue, that was I. Trading poems with Claudia, sharing songs and stories, observations and our many little truths.
Everyday the house is more my own, organized around my creativity. The old office is now a lab full of atari st’s. The dining room is a music studio. The couch is my office and the coffee table has books, chocolate, cards and flowers, folders, pills, a journal and my grandfathers letter opener. My friend, a bike, lives with me in the living room. And Dave is sleeping here as Claudia has the guest bed. The wall heater creaks as it fights the cold.
Terribly regular now to spend six or seven hours at the hospital, transfusing cells to make up for my inability to grow them. Saving me until I’m well and ready for another chemical attack. Blood tests twice a week are anticipated as they predict where and what I’ll be doing day to day. There’s little planning beyond them. Five clinical visits in five days.
My parents were here for most of three weeks excepting Thanksgiving and our relationship is moving, warmer, shedding a skin. More story telling than I can remember. There’s time. Mom has been just great from attitude to kitchen re-org, from nutrition to hugs. Dad’s got the car and yard in order and has driven me all over. He’s also a great advocate at the doctor’s; he asks all the right questions. I think I’ve been in the same habits with them for a decade and now I’m swearing more and revealing more and just being myself. They are finally getting to manifest their love into action, having been in the backseat for most of my cancer fight the last two years, now fully involved and fully needed.
Who am I? What is my way? Shoosh, my yoga teacher of twenty plus years gives me homework for my heart spirit as well as my neuropathy. Visualization. Moving joints. Asking myself hard questions. Asking me not to think but to feel.
Jennifer Jacobi sent a brick of a library filled with dark chocolate bars. Uh, huh.
David is my anti-kryptonite, he having the power of sparking my muse, foiling my assumptions, pushing more calories per meal and generating fields of love.
Music heals. Old favorites and new finds. Spoken word brings poetry fresh expression. Ryan blows my mind, his voice put to big slow beats by a new friend.
Looking forward to more of who I truely am, heals. Dreaming up a fantastic future. Visiting the inspirations of trees and words, sun and community.
I hope you’re taking care of yourself. Strive for happiness. Do that loving thing now.
Thank you for your powerful listening.
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