No More Access
Last I wrote I had just been admitted to the hospital. I never ever felt ill. Never even had a fever. The second time they took a culture, I showed a gram positive bacteria, but that was later suspected false. Then, on Sunday the 28th the PA Nicole called and said the next set of cultures showed another gram negative, and asked if I felt well. Well I didn’t. But my symptoms were completely unusual, and inexplicable. The truth is I didn’t know how I felt, the only way I could describe it was: I feel like I am burning from the inside out, but I don’t have a fever. And I’m scared.

So back in the hospital I went, for more cultures, more IV antibiotics. We decided to pull the tri-catheter, just in case it was harboring the bacteria. They sent me home, but with the mystery of the hot flashes unsolved. Was it menopause? What was happening!

It’s Always Darkest Before the Dawn
Dawn is a new friend and chef we’ve been hanging out with lately. She’s a wonderful person, truly. I feel so blessed to have had her come into my life. It was over dinner that I described to her the sensations I have been experiencing. She said, “Oh, that feeling. I hate that feeling. That is a horrible feeling.” See, Dawn has been to 82 pounds and back. She explained that what I was experiencing was my body turning back on. My metabolism kicking in. Me, expanding.

Its was a profound “Aha!” moment. What should I have expected? After all, I shut my body down, and now I’m packing it with food. Like an infant, or toddler I’m having growing pains. I’ll tell you, it hurts and is scary because it is unfamiliar. Now that I understand what I’m working with, I’m much less stressed.

The feeding tube is a fantastic success and I am so grateful for its support as I learn how to eat again. I wish I had started it sooner, but my pride prevented it. See, I really saw it as a failure. It’s funny. I feel the same way about all kinds of “artificial” support. I’m ashamed to take anti-nausea medication. I’m ashamed to take pain pills. Pride is a mean thing. Is there ever a time that it serves you? Or perhaps it is misnamed? Misapplied? Maybe I don’t even understand the word. How often do you hear about people suffering needlessly just on account of their pride? I do it regularly.

As it stands now I get 1500 calories while I’m sleeping and do my best through the day to supplement it. Some days, my appetite is strong. Others not so much, but at least my body can rely on those 1500 until my appetite improves. Plus tubes up people’s noses is very, very attractive. You should see how the heads turn!

Chemotherapy of the future and beyond!
For one week I had only one tube. The feeding tube. Apart from the growing pains it has almost been a vacation from cancer. That ended a bit yesterday, with the installation of my new Power Port. Back down to Radiology, where they installed the tri-catheter, I was expecting a similar, very conscious, very present experience. Not this time. They must have missed the knock out drugs last time. Because this time, Dan asked me, “Do you feel the effects of the medication yet?” I said, “I don’t know, what should I feel?” he said, “Ok, no.” The next thing I remember is “We’re all done!”

I am so grateful to have experienced the first installation. It really gave me an appreciation for the skill of the surgeon and I even felt glad that they get paid so much for their expertise. But this time—I was equally grateful to have missed it!

Where does this leave me now? I have a new port, it is healing. I’m feeling nauseated now and again. I’m trying to snack through the day on nuts and things. I’m trying new textures.

This thursday will be a mega mondo chemo day. Everything, including a Lumbar Puncture, and bone marrow biopsy. To be honest, I’m not really sure what this will do to me.

Weighing In
I was not allowed any food for 12 hours prior to my surgery, so when I weighed in on monday, I feel it was my “true weight” without water from the IV or a 10 lb breakfast in my belly. 94 lbs.

Photo credit: Loredana Bejerita

Here’s where I am now: I’m tired of waiting to feel better, so I’m doing things anyway. I’m exercising anyway. I’m eating anyway. I’m washing the dishes anyway. Dr. Asch seems to imply that I will and should be feeling better soon, that there is some latency from Consolidation I and the CNS phases that I need to shed. I admit to feeling a bit stronger, but again I think it has to do more with my do-it-anyway policy than anything else. I just can’t imagine feeling better than this, when the schedule says chemo weekly! I may as well adjust to a body that is poisoned all the time.

Life has been awful and terrifying this past few months. I stopped eating. Went to 85 pounds. Dr. Peterson said, “It’s as if you are disappearing on us.” The truth is I was. I had lost the desire to live. I checked myself into the hospital. Was threatened with a feeding tube. Please don’t panic. I’m not in such a dark place as I was. But I was in a dark place, and touched a level of hopelessness I’d never experienced before:

Life is mundane. People’s conversations are inane. Going anywhere and doing anything is pointless. Everything we do as humans is to stave off boredom another day. Humans are hopelessly bored or boring. Why do any of us bother living, and why should I bother when it is so hard and I all I do is sleep and get poisoned?

I realized that a feeding tube would do nothing to inspire me to eat again. It wasn’t food, it was my outlook. We went with the Mom Plan. Mom pulled me from the hospital, took me home and happily force fed me for 3 days. I’ve never eaten so much pork. I swept the walk, it felt great to use my arms. I sat in the sunshine. I held mom’s little dog. I let go of the terror.

Mom and I went for a drive to examine the changes in the neighborhood. My high school has doubled in size and Pleasant Grove is a construction zone! On the way home we ran into (very nearly literally), my sister Vicki, who had just found the perfect tree for her yard.

Great hope, small packages

I went to Nephi and spent a Sunday with my sister Kim and her family, little grand-kids, doing lovely little grand-kid things, such as showing off for great aunt Brandi while running through the sprinkler. I spoke with my brother-in-law Cory, who I know has seen this dark place, and in whose eyes and arms I knew I would find understanding and compassion. I watched my nephew and his wife cuddling on the grass and felt proud of them, and their beautiful family. I felt the joy working on and improving Dad’s house brings to my sister. I felt the anticipation of a baby horse expected in just a few days.

I enjoyed the surprise visit by Uncle Jerry and Aunt Pat (Dad’s sister), and even let Uncle Jerry trim my fingernails.

I remembered I like little dill pickles.

The experience enlivened me. I still feel like our lives are hopeless attempts against boredom, but the quality of our attempts, what we choose to do to not feel bored, there’s a magic there. Particularly if it builds relationship, to each other, to land, to animals.

I’ve been weeding my garden, some. It’s full of grass.

Wow. What a thing to hear.

Sure, my family tells me this. And my husband too, of course. And I’m sure they mean it! But the people you love are always beautiful. I’ve never considered myself empirically pretty.

This cancer stuff is really working for me.

Being a patient patient: cultivating fortitude and calm.

pa-tient
n. a person who is under medical care or treatment.
adj. bearing provocation, annoyance, misfortune, delay, hardship, pain, etc., with fortitude and calm and without complaint, anger, or the like.

Okay. After this week I am officially over it. I am tired of taking pills x number of times a day and at certain hours; going to doctor’s appointments and waiting; my body changing and worrying about every little change and what it might mean and if it is permanent; chemo therapy; the threat of hospital stays, and therefore hospital food; looking into the future and seeing more doctor’s appointments, more chemo, more prescriptions. Bah. I want this to be over. I am not patient, so I don’t want to be a patient.

I keep wondering how it is children are so successful at overcoming ALL and adults less so. My suspicion is children don’t have calendars, nor do they read and understand the entire protocol, nor do they have much previous experience to compare this one against. For the next two years I will be on chemo therapy for two weeks and off for one. I’m not sure, maybe the doses lessen. Two weeks on, one week off, for two years. Oh, my, God. It has been 63 days since I was diagnosed. I’m still much closer to my old life and schedule than I am to this one.

I’m clinging to a life where I didn’t have to be patient. This is real, I can not go back. Not ever. I am a patient. I will have to cultivate fortitude and calm to offset my anger and complaint.

Fortitude. This word works well in hymns and scriptures, but what does it even mean? Dictionary please: Courage in pain or adversity. In other words I’m scared, but as there is no out, I will do it anyway.

What am I afraid of? I could die. I might die. I will die, someday. My life is currently happening, even if it is cancer flavored. Is death the thing I’m really worried about? Not so much, I think truly it is change. I will change through this process—but into what? What will I no longer be able to do? This is what I genuinely fear.

Calm. Can I be calm? Is mine a process of fighting to stay alive, or of accepting the way my life is now? Is this a fight or a surrender?

What will I become after these two years? What new things will I be able to do? Maybe I’ll be able to distinguish when to fight or when to surrender.

I am a patient (the surrender).
I can become patient (the fight).

I’m back in the hospital, but just for 24 hours. I’m receiving a new type of chemo this week which may or may not make me nauseated. So far I’ve been lucky. Let’s pray my luck holds, shall we? This chemo will be given as an outpatient, for 8 days, over two weeks (I get a 3 day break in between). And of course this will be in tandem with the sexy oral chemo 6MP. I’m not very happy to be back at the hospital, but I love the nursing and doctor staff here so much, it makes it tolerable. Plus there is indoor walking space here.

In other news, I can’t believe how much better I feel since going alkaline. I’m a total convert. I wonder, if there is something I can do to bring FOOD to the hospital for the other patients. And of course the big question is, can they learn to love kale for breakfast? I sure do!

Out of the hospital for a bit with a lumbar puncture on the horizon, Brandi recaps what’s been happening in the course of her chemotherapy and talks about what is on the horizon.

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.

My central line

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.

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 lose things. Imagine this: In 35 years of being a milk man, he did not lose 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, to0 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 “L.A. 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.

Yesterday I spent a little time researching Edward Bach and his Bach Flower Remedies. One of the CNAs (Kishore) recommended I 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.

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.

Brandi Chase takes 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. 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.

Who's Flowers?

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.

Brandi stops to allow her drip to catch up on things with the other drips.

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 it’s 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!

Cytarabine (in the spinal fluid)

Today’s events
Spinal Tap (yeah baby!)

Bone Marrow Biopsy (left posterior illiac crest)

“Muppets From Space”