the ship in the bottle

what a mysterious undertaking, I have always thought.

not only mysterious technically...since I have no privy to the secrets of the builder...is it that they labor under all of the handicaps of trying to build anything that small, or that they impose additional handicaps upon themselves with the form, things that cannot be as easily done because the end product will be displayed as in a bottle rather than just an insanely small model on a shelf?

one is tempted to marvel at the person willing to take on handicaps so large to produce a final piece so small, many of whose details will ever only be seen by the artist.

but one always marvels at what limitations another person will put up with in order to express themself, how hard something has to be before it "counts".

I mean, people live in New York City.

no further examples of extreme choicemaking need be presented.

but those bottle shipbuilders are themselves modeling a behavior we all do.

we live and observe our lives, seeing what works and what works even better, keeping track of what effect this has on us, what effect that has. sugar and salt and ska music and sun and Dad's company and this exercise, and that slightly different one.

we see it in the big world. but we interpret everything we see. inside ourselves, we create models. we try to predict what will be good for us by remembering how things affected us and basing our choices on the model we have of its behavior.

and, ultimately, basing our life choices on the ship in a bottle we create, in our minds, the tiny us in the tiny universe whose laws are what we have so far ascertained them to be.

it is a thought I think few people consciously have, that the truer this internal model is to the real world, the better we will prosper, the better predictions we will make, the better we will take care of ourselves, in every plane...physical, emotional...

and a step further out, that the better process we have for making and evaluating this model, the better our lives will run.

a lot of what changes when we reflect on and evaluate our past and upbringing, the times when these early modelmaking choices are made and set in place either realistically or traumatically,

is a result of clearly seeing for the first time the principles we embraced to describe ourselves, people, and our world...seeing which ones had only components of clear modelmaking, and which were emotionally forced into the structure and compulsively defended from being questioned and evaluated.

anecdotes abound.

in Back to the Future II and III, we see that Marty's life is again and again limited by his emotional response of compulsively taking any dare if he's accused of being...chicken. he can't play guitar, or fulfill his dreams of being a rock and roll star, after accepting a drag race that ends in an accident. he loses his job, after being "chickened in" to a shady business deal that his boss was monitoring.

long ago, his anger had taken away his usual choice and modelmaking criteria by making a hard fast and compulsive rule "nobody...calls...me...chicken", which translates to, "anyone who calls me chicken can get me to do anything they want me to, and I will be too angry and stuck in an old spell to evaluate the choice."

in III, he is about to have an old west duel with his generations old bully/ adversary, when he realizes something I wish more people would get - Marty says, "I don't have to fight him! he's an asshole!!!" just because he is issuing invitations to a crazy party doesn't mean you have to accept. the worse opinion we have of some enemy, the less we should want to do just they want us to do, not the more.

Marty reclaims the option of making choices, even when they counter his earlier traumatic conditioning. and he has a better model of how things really run because of it. if only we could see him live his life over with this new knowledge, and make better choices throughout. oh, wait...it's the movies...and we do get to see exactly that. it's pretty darn inspiring.

what is going on with my body???

what is happening??? what do I do about it???

which drug is having what effect? what Big New Problem are we missing? why have I felt myself dimming, not strengthening? why did I have energy on Wednesday, breath enough it seemed, to sing and play for a couple of hours, yet that seemed way too hard to even imagine doing Saturday?

what is the new shortness of breath, what is the new dimming?

I have been laboring hard, as has my whole extended prayeramedical team, to make a good model of the cancer, to know what it doesn't respond to and what it does, to know the effect of every drug and watch for side effects.

in these overtime Miracle days, I've had the construct that the amiodorone is affecting my heart, limiting its heart rate, maybe keeping it in sinus rhythm and away from defibrillation. the dilaudid/ morphine...I accidentally skipped one the other day, and didn't feel very good during those hours...

but decadron has been my personal model scapegoat drug.

munchy appetite? oh, doctors say,that's the decadron. swollen legs? definitely the decadron.

trouble sleeping? decadron for sure.

while Dr. Gore was in town, we had gradually lessened my doses of decadron, with increased sleep, decreased swelling, etc. while she was away, we didn't change anything...when we heard back from her last week, she prescribed some strong cuts. we had started at 8mg a day, 4 in the am 4 in the pm...we were down to 4mg in the morning, which she prescribed down to 2mg in the morning last Tuesday Wednesday and Thursday, going to 1mg Friday , advising us to go to 1mg every other day on Monday, and be done by the next week.

having not liked the idea of being on steroids long before decadron was used in my first chemo, I was only too willing to go with the plan. but Dr. Gore said something interesting, potentially model changing.

she said that the idea of decadron was to prepare the body for making its own adrenaline.

well...that's something I want. and I want my body to have the time it needs to do that.

when the shortness of breath hit and the unusually low numbers on the Pulse Ox Saturday, I had the model that this was a little like the last time I went into the hospital. even though that seemed more immediate and drastic...this time, for example, I felt I could get through the weekend before going in to the clinic (better than doing it through ER)...I think all concerned had the notion to look at some of the things we did...look for pleural effusion, in both lungs, the pleurocardial liquid in the sac around the heart, take the chest X rays and find out where we were at.

this is something I had wanted done for months. and, from Dr. Gore to the hospice nurse, been guided away from. if they now wanted to do it...I'm so totally there.

my model had been, well, if there is something they can do in the hospital that will relieve me, I want it...I felt like there was every chance that Saturday/ Sunday were the end of the Miracle Management days, and the beginning of fading out til the end days. I wanted to do nothing but sleep, everything was hard, woe is me.

at the clinic, Monday, that medical team hit the ground running for me. the physician's assistant, Anne Leyba, I had seen before...felt she kept driving for too long after she ran out of pavement, but she'd also said hi to us in passing when she wouldn't have had to...her heart must be in the right place...and Dr. Gore being at the other hospital today, Children's, Anne's number came up. she got us a 10:30am x-ray, an 11am appointment with her. she showed us the x-ray...it was agreed that it didn't seem to look very different from the last one. ............kind of amazing!............

but no real fluid to be drained. to be honest, I had kind of not suspected there would be, but I'm not the doc. I just have this ship I've built in the bottle of my mind, and the model of how it moves through the model of the world I've built in the bottle around it.

Anne explained carefully how, short of a C-T scan (which was not discussed) or possibly preferable to it, she would like to see a echo-cardiogram of my heart. that would show if fluid had built in the pleurocardial sac. it also tended to cost, she said, 20 or 30 thousand dollars, and unless it were specifically authorized by hospice, might fall through the cracks and not be paid through insurance, either. outpatient echo-cardiogram tests tend to have to be scheduled a week out, not ideal.

kind of a consideration, eh.

she found us a room with a bed and wall oxygen...a tank lasts like 45 minutes and is always this consideration...to wait in while she went to war.

we switched from a nasal cannula to a non-rebreather mask...harder to talk, or eat, as it has a bag like the ones on an airplane, and covers nose and mouth both. but more efficient, and helped with breathing and Pulse Ox numbers.

she came back she said with fabulous news. we had an appointment at 4 for an echo-cardiogram. and the doc would look at it today and report back.

and so it was that I had the test, and the doc said there didn't seem to be much growth of the tumor pressing on my heart, or more than 100cc's of fluid in the pericardium. and we were free to go home.

I did go home, on a day I wondered if I would be checked into the hospital and never come out, and a bottle full of squall rocking the models I had built of the cancer.

more later...to be, happily, continued