week one

4 AM Thursday the 9th of Jan
hello everyone
since thursday we have been
1: drinking and eating an enormous amount
2: laughing raucously and fully
3: appreciating the fine tuned madness of excellent scotch
4: doing dishes and washing floors
5; talking too much and sleeping too little
6: feeling good and right about our decision to opt for quality of life,

Tony is
1: handsome, elegant, centered
2:taking care of business, attending to details, working as much as he can and
3: driving his excellent Audi and wearing his elegant brown cashmere coat
4: having massage
5: squeezing my hand when requested.
6: feeling pretty good and
7; just yesterday started feeling a little tired

Medically, we are--
1: coordinating doctors and seeing another maven surgeon at UCLA who has dealt wtih mesothelioma exclusively for many years
2: researching clinical trials that might extend life without impairing quality of life
( tho frankly i am feeling that may just be prolonging the agony- go know)
3: getting too many cooks in the pot and finding it a challenge to leave too many fucking messages on too many phone lines and all that jazz.

Business wise-
Tony is getting all his business stuff handled
We are meeting with appropriate folk about all the stuff

I am filing too many papers in too big a notebook with too many details

i am trying to sort thru legal issues and marveling at the sleaze factor of "foundation" sites that set themselves up as purveyors of medical information and then turn out to be fronts created by law firms who are courting victims of the disease as possible litigants against the manufacturers of asbestos products. money talks, kids oh you betcha. sure i want some, but oh you kid. a real nausea factor there. to be continued.

Sofie is
1: fabulous
2: back at school and getting the work done
3; getting the support she needs
4; being pretty magnificent in all ways

You are
1 being wonderfully supportive, cooking too much food,
2 seeking "occupations" that will relieve the itchy horror of this inevitable terrible journey for yourselves and us
3 sending us love and light and information and care and and bad jokes
4 being just exactly perfect in your perfectness and friendship and respect of history adn your own journies in connection with our own histories. this journey is everyone's. it connects with our own personal searing slashes of life-- everybody has those-- and in going thru this with us everyone steps a bit closer to healing their own pain.

You can
1: read this blog and stay tuned
2: know that you are on the list for counsel , food, help when we need it
3: stay connected with love


We will probably go to a weekend celebratory mode next week. During the week we'll keep it lo key and keep the place as sane as possible for homework and rest and small events and on the weekends we'll go to an open house thing where everyone who wants to can come by and eat and act inappropriately and laugh and talk and all that. We will do that as long as that makes sense and then we will do the next thing.

THIS WEEKEND we are family-ed in with sister Cindy in town so stay tuned for more info.
I will try to post as often as I can.
there we have it.