I think there is some kind of pattern to when I feel like I have the capacity to write something. It has to do somewhat with where I am in my chemotherapy cycle, right now I’m in an off week…coming to the end of an off week. Last time I wrote I was just at the beginning of a cycle, so still in the “wellish” feeling stage. I really must keep a log of how I feel from one day to the next, I wonder if there are patterns and predictability?

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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! Read more…

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? Read more…

Today a total stranger said I was beautiful. This hasn’t happened to me in years. This may never have happened to me. She said, “You probably hear this all the time, but you are so beautiful.”

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. Read more…

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’m learning how to be a person in normal life again, and everything takes so much longer! Seriously. Getting dressed takes minutes now instead of seconds. But all is well as this report soon shows…

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! Read more…

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. Read more…

A point comes in every chemotherapy where one confronts the question of hair loss. Brandi’s approach: have some fun with it.

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[Editor's Note: This article was originally published as Science Fiction Geek Love on Brandi's blog.]

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. Read more…

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 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. Read more…

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