Tuesday, December 23, 2008

Science-Fiction Geek Love

As part of our two-year courtship beginning in 1998, Randin introduced me to the Dune series by Frank Herbert. We read the books (yes, even God Emperor) and discussed them as a means of getting to know each other, and to give us something substantive to talk about on the phone besides "Oh I miss you" and "I miss you too". At the time, I was managing the Miracle Manor Retreat in Desert Hot Springs, and he was living and working two hours away in San Diego. We would see each other every other weekend, more or less.

Anyway, these books are subtle and profound. They work on your mind in an most ingenious way, focusing your attention on the manipulations and objectives of choice, power, and fate rather than on the big show. We would laugh when time and time again we'd read hundreds of pages leading up to the machinations for a major battle, to which Herbert would dedicate a paragraph, before continuing with the next extraordinarily long stratagem. Perhaps the effect on the mind is cultivating patience!

One of the major scheming factions are the Bene Gesserit. Wikipedia describes these woman as a secretive sisterhood whose members train their bodies and minds through years of physical and mental conditioning to obtain powers and abilities seem magical. Outsiders often call them witches. Naturally. I call them yoginis. 

The litany against fear is an incantation spoken by the Bene Gesserit in order to focus their minds in times of peril. 

I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain.

I confess, I use it, and it works. Upon waking for the first time after having my Central Line installed, I was overwhelmed with fear. The pain from the procedure was upon me, and every movement hard, and unfamiliar.  I saw two years of this and wondered how I would ever endure it. It was a dark place, and I looked into it, long and deep. It passed over me, and through me. And here I am. Day 23. I remain.

Wednesday, December 17, 2008

Lies my father told me

Yesterday a dear friend and I were discussing how convincingly folks rattle off speculation as truth, and how, without some thought, easy it is to believe them. One of my father's favorite truths was that once you start going to the doctor, they've got you. You're whole life thereafter will be nothing but a series of drugs, and treatments, and trials over which you will have no control until they refuse your insurance, break you financially, and finally leave you living under the viaduct. 

This truth was so profoundly and emphatically expressed that when my sister and I heard my leukemia diagnosis one of the first things we said was, "For the first time, I'm relieved Dad is dead." It shook us right out of a two month reverie of grief. 

In order to save my life, which in itself is a remarkable question, I've had to examine Dad's lie. Underlying it, of course, is fear. Fear of loss of control. Probably Dad's greatest fear. Dad didn't like to loose things. Imagine this: In 35 years of being a milk man, he did not loose a drop of milk to spoilage or damage. Can you fathom this? Not one, not a drop of milk in 35 years. 

Dad had a handle on things, but not over people and circumstances. This made him very uneasy. To protect himself he loved roughly, as if with large callouses fumbling with a delicate, fragile, bobble he might crush. Or better yet, he'd never picked it up at all. The greater the risk in love, the greater the intimacy and care, the more fragile he'd become, until he was the bobble in calloused hands. That was not a place he liked to be—completely out of control. You never, ever know what the other person will do in any given circumstance.

Let me say that again: You never, ever know what the other person will do in any given circumstance. It is the key to unraveling Dad's lie or any other "lie of fact". 

We receive input all the time. Statements of "fact." For every bit of input we have a moment of reflection, and then a choice. This happens radically fast, but it happens, and in that moment we shape the probability of the events that follow. Unexamined, you have an semi-conscious life, but examined you are in touch with the most divine will. I don't want to use the word "control" because will is more a process of aligning your heart, body, and soul, and less about forcing an outcome. Outcome is too far away, to great and unknown and risky, but what happens next is always within our grasp. See. I may not know what the other will do, but I do know what I will do. Witnessed, every heartbeat, every breath is a moment of divine grace. 

Being diagnosed with Leukemia has been a most amazing input. It's lousy with opportunity for expansion (prakasha) and reflection (vimarsha). At each moment, I decide what I will do, and shape how the experience will be. I wonder, Dad, what you would think of my experience so far, if you were here. I wish you were alive to see it.

I dreamed about Dad last night. Dreamed I carried his rapidly shrinking body to the hospital for treatment as "LA Woman" played in the background. I consoled him, said, "No Dad, they really can help you, it doesn't need to be as bad as that." When I arrived at the doors to the hospital he was dead. I didn't let out a wail, I simply held him to my heart and said, "I understand." Dad lost his first son in the same way, from infant pneumonia. He died in arms at the hospital doors. 

Loving is risky and the outcomes are uncertain. You never, ever know what the other will do. But you can know what you will do, from one moment to the next. I love Leukemia. I love it.

Friday, December 12, 2008

Flower Remedies

Plants comprising VincristineYesterday I spent a little time researching Edward Bach and his Bach Flower Remedies. One of the CNAs (Kishore) recommended a try a few, and of course, subtle as they are I have still noticed a difference in my overall well-being. I've always know about Rescue Remedy, but Dr. Bach, and his approach to well-being is lovely, and subtle, and specific. Well. I can't recommend it enough.

Yesterday I also received the chemotherapy Vincristine. My nurse mentioned it, too, is plant derived. I thought, "Amazing!" 

Vincristine belongs to a class of chemotherapy drugs called plant alkaloids. The active agents are derived from the Periwinkle, Pacific Yew Tree, May Apple Plant, and the Asian Happy Tree. Most amazing to me is the periwinkle plant, which grows wild around most homes in Arnhem Land. I've often used these little flowers in my daily puja, picking five pink ones (to remember the yamas) and five white ones (to remember the niyamas). I'm grateful to have actually handled and cultivated this plant!

For more information on Vincristine, I highly recommend Chemocare.com

Tuesday, December 9, 2008

There and Back again

I had a wild experience the other night, after my first dose of the chemotherapy "Dr. Rubicen" (doxorubicin), and being totally, utterly saturated with fluids to the point of a cylindrical shape.  It was hard to breathe, laying there.

My room filled with shadows. All my loved ones filed in. You were all there. My brother's voice, Slade, said, "Brandi, this is going to get hard." Karen Bidgood's voice said, "Lay back, you need to get ready."

So I did. I thought, "Is this it? Is it time to go?" My body began to vibrate, and my mind and ears went straight to the most magnificent AUM. 

And then there was silence.

And then my body began to vibrate again, and the my mind and ears were filled with AUM. 

I opened my eyes and I was very plainly in my room, very vividly in this life. My life, with leukemia. This is my life, and it isn't over yet. I'm here to be this now.

Friday, December 5, 2008


Dearest. This song is how Randin feels about me. He wrote it on my 32nd birthday. I recommend listening to it on head phones, loud, while walking. I always listen to it when I walk to and from my accommodation to what ever yoga thing I'm attending.  I'm listening to it now. Isn't a love expressed such as this a good reason why?

Wednesday, December 3, 2008

A Stroll

First off, I've been peeing like a race horse for days. I don't write this to be crass, but because I learned last night that there's a reason for the expression related to my treatment. Race horses are often given "lasix" to make them pee, so they will have empty bladders and therefore run faster. My nurse Tony told me this during a discussion over my "hat" and the number of times its been emptied, and the lasix in my drip. More on this later if you are interested. In the hospital hats are not for heads.

Anyway, like a racehorse I'm out of the gate, going on a stroll around the ward. (In Utah its Waard, not Ward). These strolls are really important, and I'll need lots of encouragement to take them, pukey or no. I get to get all dressed up with almost nowhere to go. Hey Marlene, check out the legwarmers, they are they height of style with my yellow robe, hazmat mask, and rubber gloves—LDS Hospital winter collection 2008.

I never travel alone. I always have my buddy the drip nearby. I'm looking for a good name for it, since no one likes to be called a "drip" even if it is what you do for a living. If you have an idea for a name, post it on the facebook group. If I choose your name, well, I'll use it. Maybe I'll have a prize for the winner.

On they way towards the hall where I am developing my silly walk for the Ministry of Silly Walks I stop to enjoy the fresh flowers that arrived today from the mysterious J and J. I can't have the flowers in my room, but the nurses are enjoying them at the station, and I can stop to visit them. I'm embarrassed to admit though, J and J who are you? I want to thank you properly for the gift! And just a reminder, I can't have anything living in my room because of the bacteria and microbes. Pictures of flowers are best, or pictures of outdoor places. I won't be walking outside any time soon

On the subject of silly walks, we'll take video of my Silly Walk in development if you want to see it!! With government backing I'm sure I could make it very silly.

After my silly walk practice, I like to stop for my drip to catch up with his/her peers round the water cooler before returning to my room. 

Rainbows abound in E847. Keep them coming if you have them. Flatter things work best. 

A much more intense lymphoblasting chemo begins tomorrow morning at 6:00 AM. The horse is out of the gate. Would love to hear any suggestions concerning philosophical approaches to nausea. When its spinning, do I spin with it, or against it? Kiran, you probably know best what with the Tibetan 5 Rights! Hey Arnhem Kula, spin a few for me!

Tuesday, December 2, 2008

The Red Shoes


Oh she move like the diva do
I said Id love to dance like you.
She said just take off my red shoes
Put them on and your dreamll come true
With no words, with no song
You can dance the dream with your body on
And this curve, is your smile
And this cross, is your heart
And this line, is your path

Oh its gonna be the way you always thought it would be
But its gonna be no illusion
Oh its gonna be the way you always dreamt about it
But its gonna be really happening to ya

Oh the minute I put them on
I knew I had done something wrong
All her gifts for the dance had gone
Its the red shoes, they cant stop dancing, dancing

She gotta dance, she gotta dance
And she cant stop till them shoes come off
These shoes do, a kind of voodoo
Theyre gonna make her dance till her legs fall off

Feel your hair come tumbling down
Feel your feet start kissing the ground
Feel your arms are opening out
And see your eyes are lifted to god
With no words, with no song
Im gonna dance the dream
And make the dream come true
Im gonna dance the dream
And make the dream come true

Monday, December 1, 2008

I've got it ALL. T-Cell.

Today's menu:
Prednisone (in the vein)
Cytarabine (in the spinal fluid)

Today's events
Spinal Tap (yeah baby!)
Bone Marrow Biopsy (left posterior illiac crest)
"Muppets From Space"