the merry prankster and his wife

phew..
okay all
here we go

spent the night waiting for T to come up from recovery
he arrived at the ICU around 3 am with fairly interesting hallucinations
and a fairly interesting tangle of transformer tubes -- dangling at all angles
he kept telling me to "stop the prank now"
and to "get him his guitar" and the i "was a very good actor but
i needed to stop the prank because i was causing him serious pain"-

indeed, there was an understatement. the pain was and is major but
we got one of the magic pumps and that helped last night and now--

it seems his fantasy was that i had rented this hospital set
hired all these people to dress up as doctors
as a birthday prank to surprise him
that there really was no surgery but something had gone terribly wrong
because he was hurting terribly and if i just called off the prank
everything would be just fine. ---
hmmmmm

once i disabused him of that idea
things got sorted out and
i headed home around 8 Am to sleep for a few hours.

back here around 2 and he was moved from ICU into
a teeny tiny double room---
which i got changed into a larger fab room
and like that

josh-- tony's great friend and great doctor-- dropped in to make sure all was okay
the surgeons are on it--- wonderful nurse julie and care partner berenice
everyone has been good

word from the surgeon is that there was no gross evidence of tumor
on the lung itself
we await pathology on lymph nodes
but there was no need for removing any of the lung itself.
excellent news there.

pain is tough
but he is resting now and it seems he is doing just fine.
he'll be here at least til Tuesday and probably no guests til Sunday
so check in with me before you drop in--okay?

so many thanks to the so many of you who are calling and writing and sending love
we are on the road
and as always
i will keep you updated.

all's well that ends well-this eve at least

so the tall and stately dr. cameron
soft handed and softer spoken came forth from the operating
room about ten minutes ago
and the remainder of the surgery went well.
no further problems.
he is breathing on his own and they will keep him in the
recovery room overnight to keep an eye on him
because he had trouble earlier.

i will get a chance to see him in a bit
and then head home to sleep
now
to rest
and heal
and wait for the return of the lymph nodes in about a week

the witness team here all day
staggering out with me in a few minutes or so
no visitors here yet

a quiet day or two until we know how he will heal
and then we will proceed to the next inch.
sleep well
we've made it this far
with a little bit of help from our friends....
on this side and the other
love
xxoo

phew!

okay-- so... it looks like the Pain Team
inserted the epidural catheter in the wrong place..
ooops......... and that seems to have caused the
blood pressure to plummet--
yeah duh.... okay okay
it happens VERY rarely
all of that
no comment...
but T has not awakened and they are going in
to complete the operation at this moment--

pray for better luck this time around
it is now quarter to 5 and
Sofie is coming by for dinner and
I will hang here til T is out of surgery about 10 tonight.

and then hopefully he will awaken refreshed and
renewed..

stay tuned
much love
s

UPDATE MIDDAY

tall doctor cameron with his gentle manner
and diamond stud in his left ear
surprisingly came out
to see me on the patio here at UCLA about
half hour ago,

the operation itself was going well
the tumor was peeling back from the lung nicely
but there is a problem in that tony's blood pressure
is very low
so low that it is not responding to epenepherine
or the other drugs and so low that the doctor did not want
to continue the operation.
so, they have closed tony back up
are keeping him sedated and intubated in the operating room
and are trying to figure out what the problem is.
it may be an allergic reaction to the drugs
in combination
they have no idea

we are in a holding pattern
they are trying to figure out the cause of the problem
before they proceed so they can fix it

it may mean that they will need to wait til the drugs wear off
to figure out what to do
and then go back in to finish the cancer operation when they know.

omigod.
love
stay tuned
s

THE DAY THE MOMENT THE UPDATE LIVE

i think the best bet is to do updates as i have them today:

it was dark at 4: 30 Am when we tooled down Melrose and
debated the possibility of hitting PCH and just keep driving.
but T said, "nope, let's give it a shot"-- and
good he said that 'because once he arrived here at UCLA
he got plenty-- of shots-- of needles that is..
IV's everywhere but a competent crew--
a lotta eager young beavers a la
Grey's Anatomy-

there was a problem with the ProTyme level
that is the level of coagulation in his blood because
he hadn't been told to stop the coumadin (anticoagulant)
early enough-- so.. they had to give him a drip of the
jello stuff to make it all shake and shimmy correctly in his veins

the pain team is quite nice and competent-
and they have nice hats-- green patterns here and there..
there's the uptight, small eye glassed chief watching his underlings like a hawk, the passive Asian pain second ( that's what they call him) who watches everything and nods wisely, then the really smart Sandra Oh with the edge assistant who did most of the sticking. Shultz's Anatomy-- spening now 6 hours with him

they are probably opening him up just about now
and peeling peeling the lining away..

okay
i'm going to lunch
and will check in with you when i ahve more news.
thanks for all the sweet messages
we are fine.
we are begun.

xxoo
s

pre- opening jitters

..forgive the pun but..
we show up at 5 AM tomorrow at UCLA
and surgery to commence at 7:30

we are so very very grateful for the SCORES
of messages of good will and good cheer and
prayer circles and all the great and noble
lofts of love that are floating our way
most especially T's way as we move out of
the celebratory mode to the real deal of survival.

i would be lying if i said there are no jitters
but i also need to tell everyone that
the heaps of ice cream and scotch and love and
joy and gourmet meals et al have changed
T for the good
truly for the good

we all need the boost now and then
of realizing our value in relation to the many
with whom we live and love
and T has received such a strong and steady outpouring
of yes and yes and yes that it has changed and refueled him
for the long and arduous task ahead.

tomorrow we start the long haul
and we will continue the
one inch at a time policy which has served us well--
as the wise cousin betsy said at the beginnng of the road
"this is a marathon" and we are just about to approach the first hill.

so,thank you for your love support friendship and goodness
you are known and acknowledged and you have made our life the
last two months a wonder of strange hope in the midst of madness.

T's afternoon nap of fatigue will give way to longer rests i imagine
but we have no idea what is next except for that we move into it
well cushioned with as much ammo as possible

so, stay tuned to the blog
i will update as often as i can

i won't answer the phone but will return email as best i can

much love

profundis absentia

so, i figure i better check in with everyone
as we close in on the date
yep,despite living and feeling better than he has in a few years
making us really feel the total absurdity of this fact
this thursday
the 28th of feb -- is the date for Tony's surgery.

tony has had a great time the last two months! so much celebrating, two lakers games, a night at Disney Hall, crowds at MOCA, countless bottles of scotch, homemade spaghetti, oscars and pizza and ice cream ice cream ice cream-- gourmet, hand delivered, cheap and fabulous galore. SOOOO many thank yous to all providers. it has been a jolly, chubbifying time-- and, thanks to the careful placement of that talc in his lungs during the biopsy, an easy breathing time as well. and let's not forget that the rhythm gods have restored his heart to sinus rhythm for some reason or other after seven years

so, despite all evidence to the contrary
it is true that T still has a life threatening cancer and
the magic surgeon is going to go in and dig it out by hand

here's a run down again for those who haven't been following the blog.
he goes in thursday, they slice
select a lymph node or two to sample
they sew
he wakes, they rearrange the 4 -6 tubes coming out of him at a tasteful angle
drug him heavily
he goes back to sleep
this goes on for a few yucky days, i am told
then, miraculously, he begins to feel human again
and they move him from one unit to another and he begins the
process of letting his wounds heal and his lung get used to not leaking air.
this can take anywhere from 5-10 days depending on how windy he might or might not be.

then he comes home, sleeps a lot,
rests, chats with friends, watches bad movies
takes more drugs and generally chants to the healing gods to make him feel better--
once that is over--about a month-
then, he goes into radiation
internal sunburns we've been told.
then.... depending on the state of the tasty lymph nodes
he gears up for 4 months of chemo
once that is ALLLLLLLLL OVERRRRRRRRR and he is still standing
(hopefully)
then he goes on interferon every day for the rest of his life.
sound like fun.
you bet.

so, we are in for it
and will proceed as we have proceeded thus far, one inch at a time.

we have plenty of food, thank you.
once tony comes home stay tuned for visiting opps
and so it goes.

sofie had her 17th birthday yesterday.
the guest bathroom is almost finished.
i will be at UCLA during the next week with T.
email is fine. i will not be answering the phone.
but will update the blog every day that there is something to say.

pray for steady hands and great drugs.
xxoo
s

you gotta know when to hold 'em....

while lying on a massage table last night
breathing deep to help the thumbs of the able Anthony
to release my neck and skull from the power grip of
"fine fine, everything is just fine thank you"

i got to thinking about what is worth holding on to
what is worth letting go of
and the wisdom to know the difference..

there's love, always good to hang on to
if you can figure out what it is and
who is really delivering the goods
and there's resentment-- good to get rid of
but sometimes great to hang on to
when one needs a wound or two to lick
and then there's what you learned in kindergarten
sometimes worth it and sometimes a pile of crap--

but then if you're supposed to let go of things
how come the body holds on for dear life
or clutch of death spasm
to the point of illness or reformation?
and if we are supposed to trust the universe
then how come the universe continues to confound us
with lessons that give only the most enlightened the clues
with which to proceed?

this takes me back to that thought about the punishing god
a few weeks back.. the one that says "kneel and tremble"
rather than "ah babe it's all gonna be okay".

i recently have been lucky enough to spend time
in NYC again, my spiritual home, in my spiritual
sprouting place , that rusty theater on 52nd street
and i have had the distinct pleasure of seeing faces come up those
stairs that i have not seen for over thirty years
and
as each face climbed the stairs and came into view
i had to push aside the years and find the spark
holding them to their essential selves
the selves that I know and that know me and
there they are... still there, still holding onto the life spark given to them
and still giving that life spark to me
that's a good holding, one that multiplies

and then there's the grab of my old aunt at my dad's funeral
who wouldn't let me see my father's body for the last time
and chose instead to envelop me with her pain rather than let me have my own
now that was bad holding

i think it's what jean paul sartre said:
"now and then i feel the caress of time as it goes by"
and its what i feel in my neck clawing into my nerves so very close,
holding on for dear life in every muscle cell and atom
to what i want to be true
to the picture i visualize everyday
to the happy family and good times we are stockpiling

head trust is fine.. therapy helps, so does life and intellect
but wild, primal trust
that sometimes comes with a lover
that trust--to release completely into what is
that is a path to be sought
and then balanced
between taut attention and flaccid surrender

we love and hope and laugh and ignore
and then , just like King Kong, God picks us up by our teeny tiny feet,
wiggles us around and says , just like my
sad and crazy mama once did
"go ahead, kid, live. i dare you."

it ain't so bad but it gives you a run for your money.

no news

.. is good news... isn't it?
frankly , we haven't a clue.
it seems odd that after such drama of the
last six weeks that things have settled into a
dull damp rhythm of hospital tests and
too much detail debris and
calming others fears
and back to the basics.
but we are moving thru the days with
no idea whether terror and end of planet planning is in order
or just adjusting to the next thing which will
lead to the next thing
which will lead to the next.

t is in good spirits, a little tired
a little pissed to have to be doing all this shit
when he'd much rather just snooze but
he is dutifully leaving bits of himself in various labs
and x ray machines around the west side
i am wrangling with insurance people and
setting up agreements that may be moot
looking for more teaching hours to bank against
the coming cuts at Cal State --my savior in the health insurance world
the last months and now not sure how long they can sustain my job--(YIKES)
ideas welcome!
sofie is pulling up her grades and
doing the good stuff of being a junior in high school.
and we enjoyed a major frenzy of cousins and food this weekend again.

and life is good and bad and all the things it is for all of us.

there are a few glitches in some tests
and there will be a few adjustments here and there i suppose
but the adrenalin of making it to the next 30 seconds seems to have eased
for today.

tony is dreaming his dreams again
i believe there was pink and purple pee-ing in the snow
the other night, while holding umbrellas at a jaunty angle
for two japanese dancers
dressed in the same pink and purple colors-- candy stripers, oooh.
and last night leaning against a juke box in his dreams singing
"i'd like to go to heaven just not right now"
with the appropriate twang..
and isn't that just exactly where we all are?

stay tuned for more drama but today we are on easy listening
and trying to get some rest.

xxoo

day of the heart

.. and true to its title, T spent the day
with the Head of Cardiology at UCLA.
A lovely fellow who pronounced him fit and
hearty for the journey ahead-- except for a slight
retake of a test or two -- but fine just fine to float on.

it's like navigating a very long frigate into
healthy harbor. this surgery preparation.
dropping off fuel for the return ride-- the transfusions
and getting the tug to pull just right,-- the heart engine
and making sure the bilge pump is ready to rid the innards
of the stuff not needed for ballast

and all those nautical references..

and then, we three ate garlic chicken and
calamari at versailles tonight
and onions and bananas
and chatted.. just the simple stuff
a conversation about school and what
makes a heart healthy on valentines day--
like what makes the heart happy and worthy--
what makes a life well lived

and sof says;
"love. loving. that's what i want to accomplish in this life.
loving and being loved and so far so good"

and us mama and papa grin the botox grin
at and thru each other--
that is, our faces moving no discernible muscle
ah! to hear the words and feel the feeling!
receiving the love
receiving the heart healthy gift of a kid
who knows the value of giving and receiving same.
especially this year.
especially all of us together

and you too, our blogster family.

happy valentines day
may we all learn the joy and fear of giving and receiving love.
and let that whack us thru the energy fields
for that's what'll sustain
in all dimensions

"to infinity and beyond"...thank you once again, dear buzz.

silence

..is golden sometimes.
adjusting to the news of Friday has left us silent
a lot of thinking
about survival and its costs
its benefits
its adjustments and its demands.

besides a busy agenda of work and avoidance
silence has changed the landscape as
there is a big long whistling corridor called the future
that is hard to people, to focus or grasp

tony is dreaming again, this time of piles of multiplying powders
like the starry night talc heaved into his right lung to let it breathe
during the biopsy
like the cancer that keeps piling up in the pleura

and we got the date today
28 february for the surgery at ucla
many tests and measurements
documents and assurances between now and then
legal, medical , spiritual

about ten days in the hospital they say
to wait til the lung no longer leaks
and can hold the air that bellows it
and then home to rest and heal some more
and then we shall see
how the body withstands and the spirit fulfils the task.

it is no small thing to contemplate any future
but one uncertain and mixed with reality
has all sorts of colors,
no need for pollyanna and her "glad game"
we can find much to be happy about

but it's those lurking rainbow prisms
that shed surprising light and color
that hold the most interesting of gifts

garish in their promise
translucent perhaps
or channeling light into laser
digging in, raw

just what part of the reality sandwich shall we land in.
is not quite clear
we have to listen to the silence along with the bruiting ballyhoo
and continue our marigold journey.

i like to think of the hands of the surgeon.
in the photos you can see his hands coaxing tumor off lung
cajoling it to peel itself back and away from healthy meat-
i like the way his hand looks in that picture, holding
the heart of the man he promised to save
strong like the sculptor, feeling the tissue for a clue to its release
like Michaelangelo did with angels from their slab.

remember walking thru that gallery in florence and seeing the way life grew from rock?
i remember that.
let's remember that.

to sleep perchance to dream

what do you do when you get what you want
but you want what you get to be better
but you'll take what you get
for the sake of the bet and forsake
what you thought could unfetter
the long long days of hard hard work
ah to rest, to sleep, to sleep perchance to dreammmmmmmmm

last night pursued by the dark skinned fellows again
all through the streets of New York
nothing unusual, just exhausting and a recurrent dream
for years now, almost caught in the streets of New York
and T had been dreaming of singing...
yes, all last week, he would smile and turn in our bed
and a long low wail of rock and roll and guitar riff
would dribble from his mouth, eyes closed, eyebrows lifted in delight
i thought it was pain or horror
no offense to his dream state composition intended
but he would wake, having slept well AND having garnered
rave reviews from the gathering in his head
all those angels gathering to welcome him home, perhaps
preparing his own little rock spot of fame in heaven's chelsea loft
BUT
not right now, fellas

yes has come from the heavens like Groucho's duck
quacking it's clatter and saying not yet, suckah!!

there's a whole lot of yes-sing going on,
yes, says Dr. Gupta, beautiful Indian eyes leveled at ours
yesterday in the surgeon's retreat
yes, the make up of the cells on the biopsy slides are 90% epitheliod
that's the good kind
and yes, you do not have cancer in the LEFT lung- that was inflammation
and yes, you DO have more intense cancer on the right lung
but yes, that cancer is most likely in the pleura and not the lung
and yes, they can and will peel away the pleural tumor
and yes, it will be an 8-12 hour surgery
but yes, there is only a 1% risk of mortality since there is no
invasion of major organs
and yes, they no longer do the other originally proposed surgery which would have taken the lung and had left the friend of a friend in England T spoke to
barely breathing two years since
but yes, it was too barbaric a surgery and the survival rates are now found to be the same between that surgery and this
and yes, the atrial fib may be a problem but
yes, they can handle that with drips in the ICU and
yes, that may mean that the four count them four tubes
sprouting from his chest
may have to be in place a few days longer but
yes, T will probably be home within 5-7 days
and yes, you will rest for about a month
( here's where the visiting and the food train comes in, guys)
and yes, there will be radiation and
yes, maybe even chemo after that but
yes, it's not as bad as it once was and survival median rates are around 2-3 years or more-- that gets us through sofie's graduation
yes-- we even have a happy and RICH survivor of the surgery right here in the next little cubicle..

and in walks mr d von h who is not slouching or slurring
or moaning
he looks fairly sharp in his loafers and yellow button down shirt
and he tells us his story of his terminal diagnosis
inoperable, not a chance- just like T
and how his wife found
cameron on the internet like me did
and how he had the operation in june
and he looked perfectly fine and
he just dropped off a major check for the
Pacific Heart and Lung Institute because not only is he alive and looking spiffy
he just got a settlement check from his lawyers of TEN MILLION dollars.
hmmmmm
now isn;t that interesting??

now, T hates yellow button down shirts and the details about the ten million may not grace our story but it's a nice touch to his, don't you think?


so, swoop swallow gulp
change gears and stay the course
because it's not over yet
and then there is more living to do
and that can be as tough as sailing over to the great beyond, perhaps.

but, he's made the leap of faith and in about three weeks
maybe early March after our next First Sunday gathering and
he's banked enough blood out so his own blood can be transfused
back in
the next phase commences-- at UCLA
so stay tuned.

there will be depositions and cardiologists before that
and god knows what else
but it certainly isn't dull.
xxoo
s

we're melding ... melding............

there was a fair amount of melding today

in our three lives
curious
as we were all three in different locale

me, i wandered the arboretum at fullerton
the green headed ducks quacking and shaking their heads
just like me
and sofie, split from chem and cruised
the curves of mulholland solo and t
stayed home deep deep and deeper into his
own pool of inquiry

all gasping the same breadth and
balancing the exact same
radioactivity

we are traveling this road in
synchronistic lock step
sensing the hair curves of the road
and just like those incredible flocks of boobies
we met in the galapagos last june,
who tilt on a diamond cut and weave their wing spreads--
soundless and in tune
we three dive bomb into our
own frenzies of discovery whether we want to or not

alone remarkably in tune

i remember the years in the Vanities dressing room
when we three girls breathed and made that world together
we all three had our moon cycles at exactly the same time
all bleeding and blowing up and making magic as one breathing growl

and so now, despite adolescent angst, and midlife restlessness
and exhaustion from too much accomplishment on his back
we three sre one
weaving and darting , sailing the updrafts and
roller coaster stomach drops without saying a word

such is love
such is love


clarity is approaching but it is not without cost

on being a jew

one wonders over the years of hebrew school
and chicken soup just who cares where you come from.
i mean each culture has its virtues

but i have learned slowly, hard-ly
that being a Jew is just who I am tho
it has no particular virtue except to have formed me somehow.
many in my camp snickered when they heard i was marrying
a Tony from California. nobody was so sure about him.
too cute, too hip, and with a heart like that? and those eyes? and he sang????

goyishe coup, they snickered, those aunts of mine
and the jewish boyfriends who scorned me for not being holy enough
in my youth.
though my holiest of friends embrace me from every part of the cosmos
and my years in monasteries and church socials have shaped me
more toward the good than running from the oppressive expectation and "mitzrayim"
(the narrow place)
that comes with the cultural in crowd mentality

but,
the jews were in residence today
i saw the generations being channeled today
in my long haired, grey bearded husband.
the sun slanted in from the green porch through the barren bougainvillea
and head bowed, glasses pressed against his nose, he studied,
he davened, he dove deep into the work before him.
today my Tony revealed himself as the grand son of a rabbi from Warren , Ohio
(did you know that?)

i could hear his brain mechanisms chanting the pilpul
"on the one hand" his head seemed to say, but then
" if sixty angels danced on the head of a pin
why now could they not take away one sixtieth
of the disease in my lung?"
and so the prayers and reasoning went
on and on- quietly conjuring the past
seeding the future-on the one hand on the other hand
til he was exhausted
and went to lie down with his thoughts.

my husband the Talmud scholar,the yeshiva bucher studying the
medical options on his disease, reading the biographies of the
patients sliced before him, the outcomes, the measurements.
talking to a friend of a friend in England still weak and struggling through
the remnants of the surgery he had two years ago to "cure"his mesothelioma.

and the chanting, the rocking of all those rabbis in heaven, i could hear them
hiding under their dirty taleisim, praying, snuffling, closing their eyes, stuffing their mouths with herring for inspriation
cleaning their glasses, tipping their heads from side to side to shift the ear wax---
but, ultimately they stayed in the yeshiva of the sky

they did not come and sit next to my exemplary student,
my seeker of the truth, the logician adding inti's and rupiah and
trying hard to see how all this adds up to life and hope and possibility.
no. they have left him to his own study, his own gathering of information
and ultimately
to his own leap of faith that will move him where he goes

for the key to prayer for a jew
is ultimately to leave the brain behind and ride the soul
through the clouds to God--up to where that celestial yeshiva rents space
to ride up kind of like Buzz Lightyear and dance in the clouds and trust the wind
and be willing to lose all for the oneness of whatever oneness is.

sure, easy, right?

I wonder if Buzz's Super Rocket can give our Tone a lift.

ah silence

the joy of nothing special has graced us for the last few days
super bowl parties, and corny school silent auctions
and dinner with friends and talks of obama and hillary and
watching the mexican plumbers break their backs dig dig digging
the trench to our new gorgeous garden bathroom
the important stuff

tony has been quoted as saying he's had more fun in the last month
than he's had in years.
scotch and chocolate and friends and hilarity
and naps on the couch.. well you get the picture
but
oh well
the jig is up or almost up
so now to the difficult decisions with no answers
too many opinions and no real out except through the miserable center

i tell you-
this staying in the moment thing
is the best case

but this moment-- this morning gave us the results of the latest pet/ct scan
and on the one hand-- as one jew once said-
the left lung has NO inflammation and so
as of this moment, the thoracic surgeons were right and
the left lung was inflammation and not cancer.
okay, that's good.

but, the right lung. oh... now there's a new and different story
more growth, more mass, more enlarged lymphnodes tho
no official trace of cancer according to pet scan in lymp system yet
soooo
the time to act is now
surgery or chemo or nothing

we have ruled out nothing
so-- surgery or chemo
difficult choice since the options offered are still unclear

we go back to surgeon on friday
and wait another three hours
bringing Scrabble this time
and see what kind of cells are predominant in biopsy slide
and blah blah blah

we have no answers

and more dread
fuck eloquence