oh frabjous day
calloo callay..
night before last the dread Voldemort started
squirming again in my loved ones breast--
a squeak, then a gurgle, a wheeze like a treacherous
barn door flapping before the cyclone.
so, brilliant folk we are, hoping to avoid the
dark dawn visits to the asshole nurse at Cedars ER once again
we call the cardiologist
get him out of surgery and insist that he see T
in the afternoon
before the symptoms grow and mutate and metastasize as a
few other things seem to be doing...
so T hauls himself to Bev Hills in his Jag and
greying beard
hangs his cashmere coat against the table and
with a sigh he lies on the slab
to be hooked and slathered
"Toorn on ze elektrodeszzzz, Herr Profezzor!"
and the small white tape unfurls its slytherin tongue from the EKG box
and
there is a beep..beep..beep..beep..beep.. and again beep..beep..beep..beep.
steady, consistent, miraculously straight forward
simple
lacking pernicious inconsistency.
for the first time in SEVEN years, the little tape
and the steady beep signal a heart rate in sinus,
absolutely steady, in rhythm, no ragtime bossa nova beats,
and no moment of suspense
wondering if the heart will beat again.
nope. the miracle of steady expectation--
present in the heart of
Tony Shultz.
and the doctor looks at T
and T, he
and they tiptoe, mystified
from their respective cloaks and
down the hall and out the door
back to their own lives for their is joy
in Mudville because
the clamor has calmed.
who knows why?
maybe Eun, the cutie pie accupuncturists rotten prune juice tea?
maybe the simple resolve of no running and
lots of being in the moment
who knows... but the heart is steady and strong and clear
and so we have that.
hmmm.
and today T picked up a big check and tossed it in the bank
and took advantage of our fabulous Pleasure Account at the Four Seasons
( oh so many thanks yous for that fabulous respite of luxurious overkill)
and returned home to spaghetti sauce and scotch and
tales of Sofie's finals and analysis of her educators complete with
in depth analysis, sound effects and laughter.
all in all not a bad day.. taking it one inch
one day at a time.
we know more tuesday
last week, T, out of the generosity of spirit, spent too much time
hearing tales of cancer and cures
and clinical trials and calls to battle and all the stuff i refuse to let in my sphere.
it is exhausting
sh-h-h-h-h-h-h
hold your counsel dear friends
trust we are connected and clear
and doing what needs to be done
let us look to the wisdom of his heart
and the wonderful sign that used to grace the entrance to the
transcendant grounds of Wheelers Hot Springs in Ojai
and let us all "slow right down"
and let us say, amen.
Thursday, January 31, 2008
Tuesday, January 29, 2008
bargaining
so, if i shake my head and say no
walk away from the table and refuse the best offer
will the guy call me back and give me a better deal?
on our honeymoon in morocco
lo these many hippie years ago
we walked the souk in marrakesh
and amber beads caught my eye.
thick, i thought, and so rich and my husband
adept at negotiation even then- pre real estate life-
tossed out 5 dinar ( or whatever the moroccan currency was )
and the grinning merchant sensing the hook in the cheek says
ah sir, but surely-- 15 dinar is a better price and
we turned away with a smile knowing
we were hooked but
chosing to believe we had power
and began to walk away..
and the merchant called after us--
"ah sir sir. 15 dinar no good for you, 5 dinar no good for me
so what will be goodness" he said, toothy and rotten.
i believe there was even sweet tea in aluminum pressed tin pots
and mint leaves caught between his black teeth and
we did indeed settle midway
a magnificent 9 rupiah
winning the prize and
i took my amber beads and
wore them proudly
until that evening when tony , unable
to leave well enough alone, took
the tell tale match from the bug ridden hotel lobby
and placed its blue flame under the bead.
true amber doesn't blacken, he said
but my plastic beads did.
i still wore them,
i had them,
we bought them and
i wore them not really seeing them as a
symbol of deception but rather
as a emblem of making life work-- going with the negotiation, accepting the prize, making lemonade from lemons and making magic from scorn, as my mother once said.
so we are in the dickering mode with god and oncologists
and T trying to pin down just exactly
what he will get from this deal or that
being offered by the gods.
there was another negotiation in morocco. i swapped two pairs of jeans with monkey merchants to secure him a geode and i thought he would be so happy that i was so brave to
meet the monkey merchants alone and make the deal without him and he was furious i had given away his best jeans to the scummy scam artists at the edge of the town of lambchops and Shit Mountain. so i learned not to bargain without him and instead i watch from the sidelines and
finger the geodes i already have and
count them lucky enough for they are in our hands
and we have not been raped and brutalized by the monkey merchants
quite yet
i will see where he will land
we still have no answers
the bargaining with fate and pet scans is falsely empowering perhaps
but it has drawn me from my bed at 3 am
and i am dickering for dawn.
walk away from the table and refuse the best offer
will the guy call me back and give me a better deal?
on our honeymoon in morocco
lo these many hippie years ago
we walked the souk in marrakesh
and amber beads caught my eye.
thick, i thought, and so rich and my husband
adept at negotiation even then- pre real estate life-
tossed out 5 dinar ( or whatever the moroccan currency was )
and the grinning merchant sensing the hook in the cheek says
ah sir, but surely-- 15 dinar is a better price and
we turned away with a smile knowing
we were hooked but
chosing to believe we had power
and began to walk away..
and the merchant called after us--
"ah sir sir. 15 dinar no good for you, 5 dinar no good for me
so what will be goodness" he said, toothy and rotten.
i believe there was even sweet tea in aluminum pressed tin pots
and mint leaves caught between his black teeth and
we did indeed settle midway
a magnificent 9 rupiah
winning the prize and
i took my amber beads and
wore them proudly
until that evening when tony , unable
to leave well enough alone, took
the tell tale match from the bug ridden hotel lobby
and placed its blue flame under the bead.
true amber doesn't blacken, he said
but my plastic beads did.
i still wore them,
i had them,
we bought them and
i wore them not really seeing them as a
symbol of deception but rather
as a emblem of making life work-- going with the negotiation, accepting the prize, making lemonade from lemons and making magic from scorn, as my mother once said.
so we are in the dickering mode with god and oncologists
and T trying to pin down just exactly
what he will get from this deal or that
being offered by the gods.
there was another negotiation in morocco. i swapped two pairs of jeans with monkey merchants to secure him a geode and i thought he would be so happy that i was so brave to
meet the monkey merchants alone and make the deal without him and he was furious i had given away his best jeans to the scummy scam artists at the edge of the town of lambchops and Shit Mountain. so i learned not to bargain without him and instead i watch from the sidelines and
finger the geodes i already have and
count them lucky enough for they are in our hands
and we have not been raped and brutalized by the monkey merchants
quite yet
i will see where he will land
we still have no answers
the bargaining with fate and pet scans is falsely empowering perhaps
but it has drawn me from my bed at 3 am
and i am dickering for dawn.
Sunday, January 27, 2008
SO LET US GATHER OUR GREAT HEARTS AND MINDS
GENERIC DSICLAIMER: THE FOLLOWING IS RUMINATIVE IN NATURE. NO NEED TO BURDEN YOURSELF IF YOU JUST WANT AN UPDATE. THAT'S AT THE VERY END.
=============================================================
there are no mistakes
"life is right in any case" said Rainer Maria Rilke
in Letters to A Young Poet
well, perhaps life is right
as it holds the inexorable
and we here are placed within it to be silent in the roar and
try to ride the wave.
the WAY we ride the wave, the tools we bring to bear
the place we may be in our own journey of discovery is
surely varied-- some do better worse or draw--
no credit to be given or taken- just the way it is.
still with the "rightness "of life there is this claw
the terrible streak of raw tissue exposed
as one moves through life's certainties-
birth, death , gain, loss,
losing
the idea of our God and energetic governance has certainly evolved as we have evolved--
we were privledged to be at Disney Hall the other night to witness the Britten War Requiem
( in fabulous seats with even more fabulous company, by the way, so manythanks)-- but
the punishing God, damning souls to eternal death for dying as combatants of lousy war
the idea of God the King, sitting on high, slamming his zap gun thru the
exposed guts of penitents.. that God, we extol thee, beg mercy from thee, that God--
that is the God of a time needing to be kept in line and live on the straight and narrow
keeping the earthlings separate from the Gods and making sure we know that God has pee-ed his territory and we are not invited except on our knees--
but that God-- can't possibly address our time, can He?
okay-- waiting now for a thunderbolt
seem to be fine so will continue
my point here is that T's illness,
the recent news that two other good friends from the east
have been diagnosed with strokes or cancer,
the more recent news that the exalted and vibrant Chris Allport has been swept away in an avalanche --yes signs and wonders- in Wrightwood --Big Bear- oMYgod- this week
one year almost exactly after mentor and friend Curt D decided to end his life
the warming of the planet
the rains, the snow drifts,
the loss of life long occupations
the visiting UFO's ( two reports in last weeks)
the exhortation from our leaders that we can save our souls and the economy
by shopping......
yes, by shopping....
asks us to consider-- please consider
"the elements doth contend about us"-- all of us
we have energetic matters of the planet being brought to bear
bringing their considerable forces
upon our rather human backs
and how do we meet these forces?
with acceptance? defiance? elevation, surely.
meditation, some say. vitamin shakes?
do we meet the day as penitents groveling on our knees in front of the great Oz?
do we stand as victims at Babi Yar and wait for the bullet in our brains that will neatly collapse us into the graves we ahve conveniently dug ourselves?
Or do we attempt to understand that we are part of the great Oz --
we are part and parcel of the great creative Oz that is part and parcel of the whole shebang
and how do we meet this? how do we prepare? how do we listen? how do we bend and not break?
i don;t think sit-ups will do the trick
there is a larger , more central call from the universe
that is hooking us on a cellular level and
no longer asking but telling us to
expand expand expand
now
to try to get a handle or
at least run the rapid without losing too many limbs.
oy vey
can a jewish girl from the midwest possibly reach the mountain top and
manage the Promise Land? only if one stands atop the hill raises ones arms to the sky and believes the winds will raise her upward perhaps
i wonder if i have lost you all
"madness and despair has descended on Citrus--poor thing"
say you all.
no, not really. certainly not.
it's just that there is more here at stake
than our little lives and
enormous loves--
are we meant to take to heart the placard
GOD IS LOVE- plastered against the church wall
is GODS LOVE enough
what is it for god's sake?
who is is?
is it us and are we up to the task of integration into the cosmos?
both in this life and out of it?
here is where humility and grace come in
lots of the first and prayers for the second.
hope you were able to follow all that...
=====================================================
sunday morning "complacencies of the boudoir"- as Wallace Stephens might say.
T goes to the basketball game today with cool cousin
Sofie dines with excellent soul guide
I find hands to rub my body
Tomorrow we meet with oncologist for more opinions
and so it goes
much love
s
=============================================================
there are no mistakes
"life is right in any case" said Rainer Maria Rilke
in Letters to A Young Poet
well, perhaps life is right
as it holds the inexorable
and we here are placed within it to be silent in the roar and
try to ride the wave.
the WAY we ride the wave, the tools we bring to bear
the place we may be in our own journey of discovery is
surely varied-- some do better worse or draw--
no credit to be given or taken- just the way it is.
still with the "rightness "of life there is this claw
the terrible streak of raw tissue exposed
as one moves through life's certainties-
birth, death , gain, loss,
losing
the idea of our God and energetic governance has certainly evolved as we have evolved--
we were privledged to be at Disney Hall the other night to witness the Britten War Requiem
( in fabulous seats with even more fabulous company, by the way, so manythanks)-- but
the punishing God, damning souls to eternal death for dying as combatants of lousy war
the idea of God the King, sitting on high, slamming his zap gun thru the
exposed guts of penitents.. that God, we extol thee, beg mercy from thee, that God--
that is the God of a time needing to be kept in line and live on the straight and narrow
keeping the earthlings separate from the Gods and making sure we know that God has pee-ed his territory and we are not invited except on our knees--
but that God-- can't possibly address our time, can He?
okay-- waiting now for a thunderbolt
seem to be fine so will continue
my point here is that T's illness,
the recent news that two other good friends from the east
have been diagnosed with strokes or cancer,
the more recent news that the exalted and vibrant Chris Allport has been swept away in an avalanche --yes signs and wonders- in Wrightwood --Big Bear- oMYgod- this week
one year almost exactly after mentor and friend Curt D decided to end his life
the warming of the planet
the rains, the snow drifts,
the loss of life long occupations
the visiting UFO's ( two reports in last weeks)
the exhortation from our leaders that we can save our souls and the economy
by shopping......
yes, by shopping....
asks us to consider-- please consider
"the elements doth contend about us"-- all of us
we have energetic matters of the planet being brought to bear
bringing their considerable forces
upon our rather human backs
and how do we meet these forces?
with acceptance? defiance? elevation, surely.
meditation, some say. vitamin shakes?
do we meet the day as penitents groveling on our knees in front of the great Oz?
do we stand as victims at Babi Yar and wait for the bullet in our brains that will neatly collapse us into the graves we ahve conveniently dug ourselves?
Or do we attempt to understand that we are part of the great Oz --
we are part and parcel of the great creative Oz that is part and parcel of the whole shebang
and how do we meet this? how do we prepare? how do we listen? how do we bend and not break?
i don;t think sit-ups will do the trick
there is a larger , more central call from the universe
that is hooking us on a cellular level and
no longer asking but telling us to
expand expand expand
now
to try to get a handle or
at least run the rapid without losing too many limbs.
oy vey
can a jewish girl from the midwest possibly reach the mountain top and
manage the Promise Land? only if one stands atop the hill raises ones arms to the sky and believes the winds will raise her upward perhaps
i wonder if i have lost you all
"madness and despair has descended on Citrus--poor thing"
say you all.
no, not really. certainly not.
it's just that there is more here at stake
than our little lives and
enormous loves--
are we meant to take to heart the placard
GOD IS LOVE- plastered against the church wall
is GODS LOVE enough
what is it for god's sake?
who is is?
is it us and are we up to the task of integration into the cosmos?
both in this life and out of it?
here is where humility and grace come in
lots of the first and prayers for the second.
hope you were able to follow all that...
=====================================================
sunday morning "complacencies of the boudoir"- as Wallace Stephens might say.
T goes to the basketball game today with cool cousin
Sofie dines with excellent soul guide
I find hands to rub my body
Tomorrow we meet with oncologist for more opinions
and so it goes
much love
s
Friday, January 25, 2008
washing dishes and doing ordinary things
our friend vicki just said
-- about how surreal it all is
and then "we still have to wash dishes and do ordinary things"
and so we do
at 4:27 am the rains gushed from noah's arc onto our back garden
and the sprinklers went on at the very same time
and all i could think of was all that multiplying and drowning of things
and that was not productive.
the cat meowed, agreeing, and sent me
back to sleep and
then the heavens roared again and it was time to drive
s to school and then the guy at the gas station scowled at me
for needing a quart of
oil in the rain.
right. i get that.
and then t took a shower and T told me about his bad dreams
and i put the dishes away from the dishwasher
and then we talked about whether he was going to live or die
with a major incision in his body or unscathed
and then i did the email and ate a bowl of cereal and
then we went to the lawyer who i yelled at because she
actually was trying to be nice and do her job
and then we got in the car and i didn't apologize
and i came home and thought
well
now that T won't be around just who gets to decide when to unplug me
at the last moment
and then i folded the laundry
and posted work for my students and
ate three scones and a huge plate of chicken and a mound of
last night nava's vegetables and
then i talked to the other lawyer about just who and where and what
and how much and how dare they and isn't it too bad that ...
and then i brought the garbage cans from the street.
i did put some real wood over some real mud today though and
that felt real good
like i was accomplishing something.
spoke to the menschy doctor tonight
and he wished me a good weekend and
it made me smile because he really meant it and
i appreciated that.
-- about how surreal it all is
and then "we still have to wash dishes and do ordinary things"
and so we do
at 4:27 am the rains gushed from noah's arc onto our back garden
and the sprinklers went on at the very same time
and all i could think of was all that multiplying and drowning of things
and that was not productive.
the cat meowed, agreeing, and sent me
back to sleep and
then the heavens roared again and it was time to drive
s to school and then the guy at the gas station scowled at me
for needing a quart of
oil in the rain.
right. i get that.
and then t took a shower and T told me about his bad dreams
and i put the dishes away from the dishwasher
and then we talked about whether he was going to live or die
with a major incision in his body or unscathed
and then i did the email and ate a bowl of cereal and
then we went to the lawyer who i yelled at because she
actually was trying to be nice and do her job
and then we got in the car and i didn't apologize
and i came home and thought
well
now that T won't be around just who gets to decide when to unplug me
at the last moment
and then i folded the laundry
and posted work for my students and
ate three scones and a huge plate of chicken and a mound of
last night nava's vegetables and
then i talked to the other lawyer about just who and where and what
and how much and how dare they and isn't it too bad that ...
and then i brought the garbage cans from the street.
i did put some real wood over some real mud today though and
that felt real good
like i was accomplishing something.
spoke to the menschy doctor tonight
and he wished me a good weekend and
it made me smile because he really meant it and
i appreciated that.
Wednesday, January 23, 2008
A DELIGHTFUL DIVERSION
GUESS WHAT?
even with T so sick and us so crazed
we get a little gift now and then
my little play THE WHITE BIRCHES has just gone up on Amazon Shorts at amazon.com!
you can click and download it to your very own computer for just .49 cents!
i am so excited!
and if you want to read it and do it-- please do!
it's all pre Voldemort writing when things like being happy or restless seemed important.
but there are a few folk still out there with those concerns so perhaps the play will resonate.
watch for the other 2 pieces in the suite--ORADUR SUR GLANE and BEFORE FEAR to go up soon , along with a chapter from my novel, Dreaming in Daylight-- which I have titled ROSIE IN THE NEIGHBORHOOD.
so there it is .. and maybe next year T and I will write THE YEAR OF LIVING CANCEROUSLY and go on the road together!
my god, how absurd is this life.
xxoo
s
even with T so sick and us so crazed
we get a little gift now and then
my little play THE WHITE BIRCHES has just gone up on Amazon Shorts at amazon.com!
you can click and download it to your very own computer for just .49 cents!
i am so excited!
and if you want to read it and do it-- please do!
it's all pre Voldemort writing when things like being happy or restless seemed important.
but there are a few folk still out there with those concerns so perhaps the play will resonate.
watch for the other 2 pieces in the suite--ORADUR SUR GLANE and BEFORE FEAR to go up soon , along with a chapter from my novel, Dreaming in Daylight-- which I have titled ROSIE IN THE NEIGHBORHOOD.
so there it is .. and maybe next year T and I will write THE YEAR OF LIVING CANCEROUSLY and go on the road together!
my god, how absurd is this life.
xxoo
s
Tuesday, January 22, 2008
no answers lots of questions
big day today
T home from cedars at noon
quick run down
heart rate in better control but who knows for how long
little confidence in cardiologist
good meeting with surgeon at UCLA
still digesting info and will get back with details
surgery may be an option but we will not know until
mid February
they have to reanalyze some slides to see how voracious the cancer cells are,
then, we need to see if the left lung is inflammation and not cancer
as there continues
to be a question-- oncologist says cancer;
thoracic surgeons say it may be inflammation
pet/ct scan will give us more info--but can't do til feb 2
need to do more blood tests and some reexamination
no answers
lots of questions
if surgery is an option,, and we won't know til mid feb
then-- the surgery is to remove tumor around right lung and NOT the lung itself.
pleurectomy and decortification--
then recovery, then radiiation, then interferon ( not covered by insurance)
and disease is then treated as a chronic disorder to be managed
a la diabetes /high blood pressure-- (with a tired mr. tony and living a bit pared down financially--but I might be able to up my teaching)
this is new medical idea--not previously offered
this guy doesn't think chemo is an option-- only works 40% of time on this cancer
atrial fib is a big problem in the first week after surgery
and then of course we already have this problem but cameron
seems to think it is manageable.. but we would have to talk to
more cardiologists at UCLA
so we are still digesting
the place was all razors and tongs
rock walls and flourescent lights
kept us waiitng from 4:30- 7:30
grueling
took a break to a surreal indian restaurant with Indian MTV playing silently over my shoulder
and the ghost of lunchers swallowing all the oxygen
but then we got this possibility
surgery offers about 6 months of recovery and radiation
and then perhaps chemo or not depending on what they see when they go in
then an average of 18-36 months on average survival rate
as opposed to a 9 month survival rate with or without chemo
this from UCLA maven surgeon
we are digesting and gathering info
nothing is simple
nothing is decided
nothing is easy
i must prepare for school and work tomorrow and please understand if i am not in touch immediately
there is a great deal to manage
much love to you all
s
T home from cedars at noon
quick run down
heart rate in better control but who knows for how long
little confidence in cardiologist
good meeting with surgeon at UCLA
still digesting info and will get back with details
surgery may be an option but we will not know until
mid February
they have to reanalyze some slides to see how voracious the cancer cells are,
then, we need to see if the left lung is inflammation and not cancer
as there continues
to be a question-- oncologist says cancer;
thoracic surgeons say it may be inflammation
pet/ct scan will give us more info--but can't do til feb 2
need to do more blood tests and some reexamination
no answers
lots of questions
if surgery is an option,, and we won't know til mid feb
then-- the surgery is to remove tumor around right lung and NOT the lung itself.
pleurectomy and decortification--
then recovery, then radiiation, then interferon ( not covered by insurance)
and disease is then treated as a chronic disorder to be managed
a la diabetes /high blood pressure-- (with a tired mr. tony and living a bit pared down financially--but I might be able to up my teaching)
this is new medical idea--not previously offered
this guy doesn't think chemo is an option-- only works 40% of time on this cancer
atrial fib is a big problem in the first week after surgery
and then of course we already have this problem but cameron
seems to think it is manageable.. but we would have to talk to
more cardiologists at UCLA
so we are still digesting
the place was all razors and tongs
rock walls and flourescent lights
kept us waiitng from 4:30- 7:30
grueling
took a break to a surreal indian restaurant with Indian MTV playing silently over my shoulder
and the ghost of lunchers swallowing all the oxygen
but then we got this possibility
surgery offers about 6 months of recovery and radiation
and then perhaps chemo or not depending on what they see when they go in
then an average of 18-36 months on average survival rate
as opposed to a 9 month survival rate with or without chemo
this from UCLA maven surgeon
we are digesting and gathering info
nothing is simple
nothing is decided
nothing is easy
i must prepare for school and work tomorrow and please understand if i am not in touch immediately
there is a great deal to manage
much love to you all
s
Monday, January 21, 2008
i'm not a doctor but i've played one on tv
...and it came in handy last night
as the atrial fib/flutter/heart rate gallop sent T
breathless to the ER (once again) with fluid on the lung-- ( right one again/the one that was talc-ed)
congestive heart failure-- sounds very dramatic but we've been thru this scenario
a few times already. we should take a suite.
speaking to the fairly hip nurse,
we found out that Liz Taylor does have her own suite here at Cedars.
it has a lovely sitting room, hardwood floors and a very nice bathroom according to our sources. also a sitting area with a fold out couch which sure would have come in handy last night when we both stretched out on his bed, pretending to ignore the beeps and whistles and soundtrack of all night hospital life.
he pee-ed out two and 1/4 of those ample little thermos bottle things and he was admitted and now rests (yeah right) captive in the north tower
until they can get his heart rate under 100 again
so he can breathe, and then move and then head to the cancer surgeon
and then figure out what the next thing is. ah life.. and its unravelings...
so, once the hip nurse went home about midnight, the second neurasthenic gal, all bleached blond and square eyeglassy comes in around 1:30 AM and says:
"Oooh, so i see you have mesothelioma. I just love to learn about new things. Like, I googled it, but it didn't come up with anyting except maybe from asbestos, so did you do asbestos ? I mean how'd you get it, like what's it like?"
I raise my head slack jawed head from the bed where it was trying to sleep, eyes glazed
ready to strike when the gracious Mr. T begins nicely explaining to her the ins and outs of his Voldemort foe. And I try to give her the high sign by saying:
"Well, maybe it doesn't bear a great deal of conversation at the moment...... ( beaming beaming "cause it's gonna kill him, asshole) but she says,
"Oh yeah. Right. I guess it's over, huh?" and then turns pertly and exits stage left.
who is writing for ER these days, House, maybe?
we want credit for that little interchange.
i guess she thought about it a little 'cause she returned a few minutes later
with some injectable drug, saying
" Ooh , hope i didn't offend you. i just think all these diseases are so cool and we don't see a lot of that stuff. mostly not working guys around her, y'know. but i hope you're cool"
And T, to his credit, said something like "Well, i may not be the best educational resource for you because the fucker is killing me at moment."
She exits.
Words fail us
"Well i guess i'll read about this one on the blog," he says. And we collapse in laughter.
By the way , the view from his room over the hills at bout 5 AM-- when the sun is just beginning to peak- is actually very beautiful.
he's sleeping and i'm going home to do the same.
xxoo
s
as the atrial fib/flutter/heart rate gallop sent T
breathless to the ER (once again) with fluid on the lung-- ( right one again/the one that was talc-ed)
congestive heart failure-- sounds very dramatic but we've been thru this scenario
a few times already. we should take a suite.
speaking to the fairly hip nurse,
we found out that Liz Taylor does have her own suite here at Cedars.
it has a lovely sitting room, hardwood floors and a very nice bathroom according to our sources. also a sitting area with a fold out couch which sure would have come in handy last night when we both stretched out on his bed, pretending to ignore the beeps and whistles and soundtrack of all night hospital life.
he pee-ed out two and 1/4 of those ample little thermos bottle things and he was admitted and now rests (yeah right) captive in the north tower
until they can get his heart rate under 100 again
so he can breathe, and then move and then head to the cancer surgeon
and then figure out what the next thing is. ah life.. and its unravelings...
so, once the hip nurse went home about midnight, the second neurasthenic gal, all bleached blond and square eyeglassy comes in around 1:30 AM and says:
"Oooh, so i see you have mesothelioma. I just love to learn about new things. Like, I googled it, but it didn't come up with anyting except maybe from asbestos, so did you do asbestos ? I mean how'd you get it, like what's it like?"
I raise my head slack jawed head from the bed where it was trying to sleep, eyes glazed
ready to strike when the gracious Mr. T begins nicely explaining to her the ins and outs of his Voldemort foe. And I try to give her the high sign by saying:
"Well, maybe it doesn't bear a great deal of conversation at the moment...... ( beaming beaming "cause it's gonna kill him, asshole) but she says,
"Oh yeah. Right. I guess it's over, huh?" and then turns pertly and exits stage left.
who is writing for ER these days, House, maybe?
we want credit for that little interchange.
i guess she thought about it a little 'cause she returned a few minutes later
with some injectable drug, saying
" Ooh , hope i didn't offend you. i just think all these diseases are so cool and we don't see a lot of that stuff. mostly not working guys around her, y'know. but i hope you're cool"
And T, to his credit, said something like "Well, i may not be the best educational resource for you because the fucker is killing me at moment."
She exits.
Words fail us
"Well i guess i'll read about this one on the blog," he says. And we collapse in laughter.
By the way , the view from his room over the hills at bout 5 AM-- when the sun is just beginning to peak- is actually very beautiful.
he's sleeping and i'm going home to do the same.
xxoo
s
Sunday, January 20, 2008
inching along- attention below contains graphic content and may not be suitable for al readers!
tony is anxious for tuesday
when we will meet with robert cameron
the bigshot at UCLA
he is mostly a surgeon but he knows a lot about this stuff
check out the website Pacific Heart and Lung Institute
for some absolutely amazing photographs of these kind of tumors
being removed and the long sheath of tissue that is the tumor itself.
that is only if prurient interest in all this stuff is of interest to you..
it's pretty fascinating actually
if you remove the fact that it's you or your beloved
who is being peeled like a grape from the inside.
breathing is being appreciated a bit more
as it's getting difficult from time to time-
oxygen tanks are dotting the landscape tonight.
not sure if it's the cancer or the congestive heart failure
from the atrial fib
which has been pretty much unchecked for over a year.
and we have no viable cardiologist who actually calls us back
so we are so grateful to the menschy oncologist who actually calls back within a few mintues and offers clear, wise and simple advice
so.. we love lasix and pray for lots of liquid moving out of the body.
not much to do except wait for the surgeon,
start the chemo when we can , if we can and so it goes.
up to this point he has felt well so this marks a bit of a change
but he may be just fine again tomorrow
the details of the survival months start to become more apparent
to us
and we are striving for balance
as we make decisions about what is best,
when we seek what aid, what we balance and tough out,
which part of the house we keep as a cancer free zone, if any,
and easy stuff like that.
i gotta go
love
s
when we will meet with robert cameron
the bigshot at UCLA
he is mostly a surgeon but he knows a lot about this stuff
check out the website Pacific Heart and Lung Institute
for some absolutely amazing photographs of these kind of tumors
being removed and the long sheath of tissue that is the tumor itself.
that is only if prurient interest in all this stuff is of interest to you..
it's pretty fascinating actually
if you remove the fact that it's you or your beloved
who is being peeled like a grape from the inside.
breathing is being appreciated a bit more
as it's getting difficult from time to time-
oxygen tanks are dotting the landscape tonight.
not sure if it's the cancer or the congestive heart failure
from the atrial fib
which has been pretty much unchecked for over a year.
and we have no viable cardiologist who actually calls us back
so we are so grateful to the menschy oncologist who actually calls back within a few mintues and offers clear, wise and simple advice
so.. we love lasix and pray for lots of liquid moving out of the body.
not much to do except wait for the surgeon,
start the chemo when we can , if we can and so it goes.
up to this point he has felt well so this marks a bit of a change
but he may be just fine again tomorrow
the details of the survival months start to become more apparent
to us
and we are striving for balance
as we make decisions about what is best,
when we seek what aid, what we balance and tough out,
which part of the house we keep as a cancer free zone, if any,
and easy stuff like that.
i gotta go
love
s
Saturday, January 19, 2008
how did it happen?
'the past is always carried into the present by small things.
so a lily is bent by its permanence"-- michael ondaatje
more tuesday probably when we see the surgical oncologist
meantime
it's late
we're snoozing
hope you are too
s
so a lily is bent by its permanence"-- michael ondaatje
more tuesday probably when we see the surgical oncologist
meantime
it's late
we're snoozing
hope you are too
s
Thursday, January 17, 2008
the respite
so, my gorgeous husband stretched out on sofa like the
handsome cat he is, raises his arms above his head for an extra inch of air--ah!
and we talk--easy--
settling into a little normal rhythm before the next storm.
i'm still recovering from flu and am cozy in pajamas
not breathing in his heavily maitake mushroomed vicinity
and we just talk- like normal people
after dinner, dishes in the sink, cat meowing and dog in a dream.
so, he's all healed from the biopsy
he is well now, energy full-ish
working every day
reveling in all the laudatory tributes from pals far and near and i say
"so , what do you want to do now? the next year, if we get it," i say
"what shall we do".
so he says," friends. that's what we do.
like the day we first got the diagnosis and
we were walking on wilshire blvd dazed and thinking about death.
that's when i got it
i can't go walking around thinking about death,. all these guys on the street, they're not thinking about death,
they're living their lives. so that's what we're gonna do.
i'm going to go to
work and eat great food and lots of ice cream and to as many gatherings as i possibly can.
no dreamy weekends isolating in the woods ( he looks at me, the isolate, desperate for silence and solitude--okay okay)-- no weekends on lonely islands or quiet walks in ojai. nope, i want to be with friends and see my life."
so, it's the quiet now before the next bump.
we are stretching like lazy cats and waiting for the next thing but
for now. we are here and there and everywhere,.
gospel at the temple tomorrow, football on sunday
saturday is open if anyone wants to play(!)
so is monday
i'm exhausted and cranky and he's having a great time
what else is new?
tuesday we see the big fancy surgical oncologist, the maven in this disease
and then we make the decision to get to that chemo or this
and see how that goes
meantime, how are you doing?
life is good.
feel free to e tony at sofisdad@pacbell.net or give him a call-- office best 310 855 0100 x564
xxoo
s
handsome cat he is, raises his arms above his head for an extra inch of air--ah!
and we talk--easy--
settling into a little normal rhythm before the next storm.
i'm still recovering from flu and am cozy in pajamas
not breathing in his heavily maitake mushroomed vicinity
and we just talk- like normal people
after dinner, dishes in the sink, cat meowing and dog in a dream.
so, he's all healed from the biopsy
he is well now, energy full-ish
working every day
reveling in all the laudatory tributes from pals far and near and i say
"so , what do you want to do now? the next year, if we get it," i say
"what shall we do".
so he says," friends. that's what we do.
like the day we first got the diagnosis and
we were walking on wilshire blvd dazed and thinking about death.
that's when i got it
i can't go walking around thinking about death,. all these guys on the street, they're not thinking about death,
they're living their lives. so that's what we're gonna do.
i'm going to go to
work and eat great food and lots of ice cream and to as many gatherings as i possibly can.
no dreamy weekends isolating in the woods ( he looks at me, the isolate, desperate for silence and solitude--okay okay)-- no weekends on lonely islands or quiet walks in ojai. nope, i want to be with friends and see my life."
so, it's the quiet now before the next bump.
we are stretching like lazy cats and waiting for the next thing but
for now. we are here and there and everywhere,.
gospel at the temple tomorrow, football on sunday
saturday is open if anyone wants to play(!)
so is monday
i'm exhausted and cranky and he's having a great time
what else is new?
tuesday we see the big fancy surgical oncologist, the maven in this disease
and then we make the decision to get to that chemo or this
and see how that goes
meantime, how are you doing?
life is good.
feel free to e tony at sofisdad@pacbell.net or give him a call-- office best 310 855 0100 x564
xxoo
s
Wednesday, January 16, 2008
living in darfur
so, okay then
lovely dinner last night
we get home, climb into bed
i'm feeling a little not so sure about my stomach and
middle of the night the flying monkeys of the fearsome flu visit
and i crawl out of my conjugal bed and away from my sweet husband
to the office where i can ache in peace and
roll around with flu-ish jewish detail
and wave at T thru the window when i awake
in quarantine and not wanting to breathe in his direction
and
then read my email with an update on almost relative ed ethridge who out of no where is struggling with a massive heart attack stroke thing that came from the same fucking flying monkeys dive bombing just for fun
and then
i call my big sister for comfort and a little "oh poor baby" and then i
hear that my big brother was in the hospital this week with a detached retina and
nobody would call me 'cause i'm the suffering spouse person
and i'm thinking
this is what is must be to be a person in darfur where all you need is a little firewood to warm up the gruel and instead you get whacked by the crazy tribal madmen when you dare to venture out into life.
phew.
so, man oh man-- everybody has it. and the only way we get thru it is to share it and
shake our heads and keep on keeping on.
i thought of this as the vitamin drip i summoned to cure me dripped into my veins
and my husband was at home in bed and
my brother was recovering from the hospital and
my almost relative ed is struggling in the ICU
and it was my mom's 89th birthday just yesterday-- which she missed
because she passed over in august. peaceful but too scared.
and tonight george bush said it was okay official policy to keep pumping sonar into the waves to disorient the whales and dolphins and NPR featured that story on the UFO coming down for a look....
wow
congratulations on being on the planet right now
we've got a whole lot of keeping on to be keeping track of
much love
lovely dinner last night
we get home, climb into bed
i'm feeling a little not so sure about my stomach and
middle of the night the flying monkeys of the fearsome flu visit
and i crawl out of my conjugal bed and away from my sweet husband
to the office where i can ache in peace and
roll around with flu-ish jewish detail
and wave at T thru the window when i awake
in quarantine and not wanting to breathe in his direction
and
then read my email with an update on almost relative ed ethridge who out of no where is struggling with a massive heart attack stroke thing that came from the same fucking flying monkeys dive bombing just for fun
and then
i call my big sister for comfort and a little "oh poor baby" and then i
hear that my big brother was in the hospital this week with a detached retina and
nobody would call me 'cause i'm the suffering spouse person
and i'm thinking
this is what is must be to be a person in darfur where all you need is a little firewood to warm up the gruel and instead you get whacked by the crazy tribal madmen when you dare to venture out into life.
phew.
so, man oh man-- everybody has it. and the only way we get thru it is to share it and
shake our heads and keep on keeping on.
i thought of this as the vitamin drip i summoned to cure me dripped into my veins
and my husband was at home in bed and
my brother was recovering from the hospital and
my almost relative ed is struggling in the ICU
and it was my mom's 89th birthday just yesterday-- which she missed
because she passed over in august. peaceful but too scared.
and tonight george bush said it was okay official policy to keep pumping sonar into the waves to disorient the whales and dolphins and NPR featured that story on the UFO coming down for a look....
wow
congratulations on being on the planet right now
we've got a whole lot of keeping on to be keeping track of
much love
Tuesday, January 15, 2008
so.. a paradigm shift for us
hello friends
a busy day for us... errands and lunch at the bel air hotel for T
and me being super Mom and
both of us ending the day with massage and warm thoughts.
yesterday was a big day.
we met with the lawyer about a possible claim against
possible asbestos exposure manufacturers. the lawyer is this sweet faced killer ( i hope)
who has a brother who is a lighting designer
he's a nice yiddisha boy . a little too nice for his job but
T felt good about him i think and we signed on the dotted line. then
Tony got to tell his WHOLE work history as a stage technician and
despite the fact that these experiences are killing him
it was an enjoyable exercise for both of us,
for T to remember all those theatres and light cables and catwalks
and girls, and flats and hammers and painting jobs and girls
and ceramic studios and culpable glazes and airplane parts and yes, of course,
girls.
so, we now leave it to the lawyer to see if he can make any official connections
and the only thing T has to do is a deposition in the future and either it
will work or not but that's done.
then, on the medical front we had a hell of a roller coaster day
with everything from a possibility of many years, to the possibility of being
a"pulmonary cripple", to the possibility of dying in two months to
where I think we have landed which is probably, that:
there is indeed a confirmation of cancer in the left lung
therefore , we will not do a biopsy there to see if it
could maybe be inflammation--fantasy island surgeon stuff-
that the surgeon was hoping would allow
T to consider a horrendous surgery where they remove the entire right lung,
the lining,
the pericardium ( that's the lining of the heart) and then maybe --
just maybe, if you live thru the operation,
just about the time you recover from surgery
you're dead frome xhaustion or worse...
soooooo, frankly, i am very pleased that that is off the table.
and now so we revisit chemo and we are now being told that
it might even give T another complete year so
okay-- they have lots of nausea drugs, and i think i can convince him to go
jacques brel with a black beret
and it may even get him to Sofie's graduation!! so hell--
we're going for that.
soooo, a couple more tortuous meetings about possible scenarios and
then i think he will start the standard cistiplain and alimta chemo thing
and we will see how it goes--
so000 we re now in a paradigm shift from
dying from cancer
to
LIVING with cancer-- (read VOLDEMORT)
but this one will be named and faced
sooo, that means, sharpen your pencils and get out the cookbooks because we got a hell of a year to be living thru and we are available for social occasions, weekends in the country,
dinners, lunches, brunches, football , snoozes, beach breakfasts and other quality celebrations of all kinds. including periodic weeping and massage and pots of soup and volunteering to do the dishes.
who knows how it will go
but here we are and there we'll be...
with your help and love and support from which we are
already eternally altered for the better
blessings all
stay tuned
love
a busy day for us... errands and lunch at the bel air hotel for T
and me being super Mom and
both of us ending the day with massage and warm thoughts.
yesterday was a big day.
we met with the lawyer about a possible claim against
possible asbestos exposure manufacturers. the lawyer is this sweet faced killer ( i hope)
who has a brother who is a lighting designer
he's a nice yiddisha boy . a little too nice for his job but
T felt good about him i think and we signed on the dotted line. then
Tony got to tell his WHOLE work history as a stage technician and
despite the fact that these experiences are killing him
it was an enjoyable exercise for both of us,
for T to remember all those theatres and light cables and catwalks
and girls, and flats and hammers and painting jobs and girls
and ceramic studios and culpable glazes and airplane parts and yes, of course,
girls.
so, we now leave it to the lawyer to see if he can make any official connections
and the only thing T has to do is a deposition in the future and either it
will work or not but that's done.
then, on the medical front we had a hell of a roller coaster day
with everything from a possibility of many years, to the possibility of being
a"pulmonary cripple", to the possibility of dying in two months to
where I think we have landed which is probably, that:
there is indeed a confirmation of cancer in the left lung
therefore , we will not do a biopsy there to see if it
could maybe be inflammation--fantasy island surgeon stuff-
that the surgeon was hoping would allow
T to consider a horrendous surgery where they remove the entire right lung,
the lining,
the pericardium ( that's the lining of the heart) and then maybe --
just maybe, if you live thru the operation,
just about the time you recover from surgery
you're dead frome xhaustion or worse...
soooooo, frankly, i am very pleased that that is off the table.
and now so we revisit chemo and we are now being told that
it might even give T another complete year so
okay-- they have lots of nausea drugs, and i think i can convince him to go
jacques brel with a black beret
and it may even get him to Sofie's graduation!! so hell--
we're going for that.
soooo, a couple more tortuous meetings about possible scenarios and
then i think he will start the standard cistiplain and alimta chemo thing
and we will see how it goes--
so000 we re now in a paradigm shift from
dying from cancer
to
LIVING with cancer-- (read VOLDEMORT)
but this one will be named and faced
sooo, that means, sharpen your pencils and get out the cookbooks because we got a hell of a year to be living thru and we are available for social occasions, weekends in the country,
dinners, lunches, brunches, football , snoozes, beach breakfasts and other quality celebrations of all kinds. including periodic weeping and massage and pots of soup and volunteering to do the dishes.
who knows how it will go
but here we are and there we'll be...
with your help and love and support from which we are
already eternally altered for the better
blessings all
stay tuned
love
Monday, January 14, 2008
stay tuned!!
stay tuned
the waters are changing
the crystal ball is fogging up and shreiking
so deeply insecure because it has no fucking idea what to predict
what's a fortune teller to do???
ah yes, fellow travelers
we have a new wrinkle to predict
a new possibility from old news and who knows what the answer might be....
the SHADOW Dooooooooooooo.....
more when there is more
right now
clouds and sunshine and umbrellas and fog
and sweet lawyers with baby faces this morning
and dour faces of sweet doctors with new possibilities and
"jump down turn around picka bale of cotton
jump down turn around picka bale of hay"--- Harry Belafonte sang that one.
but we're still here--
we're still here--isn't that a Stritch line??????
oh, and we're all fighting today
he hates me and i hate them and she hates us both
and we're still here!!!! we're still here!!!!!
hang onto your hats, we're in for a bumpy night!
for a year or two?
oh, and T wants to know, if he hangs around for an extra twelve months will he still get all those great cartons of Starbucks Java Chip everybody has been showering him with??--
always a consideration, you know.
s
the waters are changing
the crystal ball is fogging up and shreiking
so deeply insecure because it has no fucking idea what to predict
what's a fortune teller to do???
ah yes, fellow travelers
we have a new wrinkle to predict
a new possibility from old news and who knows what the answer might be....
the SHADOW Dooooooooooooo.....
more when there is more
right now
clouds and sunshine and umbrellas and fog
and sweet lawyers with baby faces this morning
and dour faces of sweet doctors with new possibilities and
"jump down turn around picka bale of cotton
jump down turn around picka bale of hay"--- Harry Belafonte sang that one.
but we're still here--
we're still here--isn't that a Stritch line??????
oh, and we're all fighting today
he hates me and i hate them and she hates us both
and we're still here!!!! we're still here!!!!!
hang onto your hats, we're in for a bumpy night!
for a year or two?
oh, and T wants to know, if he hangs around for an extra twelve months will he still get all those great cartons of Starbucks Java Chip everybody has been showering him with??--
always a consideration, you know.
s
Sunday, January 13, 2008
so what can you be afraid of, let us count the ways
a little slip lower closer to the pit of knowing
10 pm, saturday night, sitting on the couch, watching the news
that was the moment
we hit the ground running tomorrow
head to our first legal appointment
and revisit the oncologist.
are there clinical trials?
hope, let's see what is hope.
what is worthy of hope.
what is grace, fighting, acceptance, joy...
wow-- there's a clinic in the Bahamas, we could get a house and all hang at the beach, yeah!
or maybe, Vancouver? it's rainy this time of year... hmmm
indigestion of the soul.
so--we looked at each other last night and we figured it out
we were really afraid.
we both knew. we were shy around it.
like maybe we shouldn't let it know we knew it was with us
fear. but then, what have we got to lose anyway- so t says to me
"i'm afraid, susie. are you afraid?"
"yes, are you afraid?"
"yep"
silence.
"I just said i was afraid"
beat beat
"oh, right. sorry."
"so, what are we afraid of, do we know?" says t, just-the-facts man
"yep, i have a really long list----" and i listed at least 27 things, and maybe then more
it was a clattery rattle in our little living room
and t said:
"wow, you have a really long list. mine is shorter."
"but you're scared-er, right?" i said
"right"
hmmm. we looked around and see if fear heard and then said fuck it.
who cares. no news there.
"okay, let's go to bed, okay?", says t
"okay" , i said.
and we did and we were still scared and we still slept thru the night and we still woke up and now it is a beautiful sunday morning and i have a headache
and sofie has gone off to pals
and tony is watching football with his sister and
hannah is cleaning the kitchen.
and we're still afraid.
and we're still here.
and so are you.
and it's all okay.
talk to you tomorrow.
much love
Saturday, January 12, 2008
in the interest of ease and delight
so, in the interest of ease and delight
i pass along to you,
courtesy of the fabulous uncle andy
courtesy of you tube
the following meditation which i highly recommend for all of us
http://www.youtube.com/watch?v=8p3lPw3LmKQ
lovely niece hannah and tony's newly
skinn-ily and even more fabulous
sister Cindy have been with us all weekend
cindy filed some horrid papers for us
i have hired an assistant for the duration
had a long sleep til 7 am
tony shultz is watching the game
snoozing all day today
until a family gathering at 4
we see the lawyer on monday morning and
i am getting even more nauseous at the research
we are starting to see
on some of the contaminants in glazes etc
in ceramics studios in the late 60's
now to determine if that glaze
was in that studio at that time
ah, click the link
it's saturday
a day of rest
xxoo
s
Thursday, January 10, 2008
FYI/THE FIRST TWO EMAILS ABOUT TONY;S CANCER
DEC 28/07
hello family and friends
hope this finds everyone well and readying themselves for the new year
we are facing a new challenge in our family and we wanted to let you know about it now though our information is basic. sorry that we have to do this via email but phone calls are a bit difficult at this point.
tony had been experiencing some difficult breathing and health problems in the last few weeks-- tho the heart arrythmia problem has always been the thing that we thought would be of most concern -
we were very surprised to learn that he had developed fluid on his lungs which was initially identified as pneumoniaa bout ten days ago
the fluid was drained and no bad elements were found but we proceeded to biopsy because a CT scan showed some distressing mass and a background akin to van gogh's starry starry night--
we were also surprised and distressed to find yesterday after the major lung biopsy here are cedars that his right lung is full of cancerous tumor. actually the wuote from the throacic surgeon is "sheets and sheets of tumor"--- we know very little more at this point in terms of prognosis or treatment. today we have a confirmed diagnosis of mesothelioma-- the asbestos cancer-- usually the gift to construction workers or Steve McQueen clones-- but now confirmed as filling the right lung of my handsome husband. go know----
so.. he is now resting and healing from the biopsy and should be home from the hospital by monday or tuesday.
we will meet with the oncologist on thursday and then we will begin to get more of an idea.
mostly -- tony wanted you to know. he is fine, clear eyed and clearly seeing every and all parts of the equation and we are taking everything exactly one moment at a time
please feel free to tell whoever might need to know--, and if anyone has an email for robin lent or leann sandefer,tom o'rourke, bill lustig and bob waks--we'd would appreciate that.
i won't be answering the phone too much in the next few days but email is always good-- we are surrounded by lots of loving friends and very smart doctors and now we need some prayers
hope to be in touch with everyone soon
once he heals from this surgery --visits probably welcome
to be continued
much love
susan and tony
January 3/08
hello everyone
well-- thanks are just a part of what everyone in our full and lusciously endowed community deserves. just know how important that love and light stuff really is--
the beauty and support of every shoulder and every sigh does really ease the load so count on me when your time comes-- because we know these times come to us all, one after the other.
and here is where we are today.
mostly tony and sofie and i are solid and strong and enjoying the true weirdness of living and its violent perfection
t and i went to the doctor today. the oncology center to the stars complete with cappuccino and cocoa makers . felt like willy wonka and the chocolate factory with a great deal of living happening in every corner. they strike just the right note. but we won't be spending much time there.
the cancer is now clearly in Tony's left lung as well as the right. the liquid excreted night before last in the ER was indeed pleural liquid giving us a preview of this fact. options were limited to us. surgery , awful and not an option since it is spread. chemo would extend his life perhaps a month or two at best-- and those months full of poison pumping and hours in a clinic with IV's and phosphoresence-- why rake muck, as buber says-- when we can be stringing pearls to the delight of heaven.
bottom line is. anywhere from 6 months to a year at the outside if we are lucky.
at this point and ths may change of course--
tony has decided that, after the fabulous evelyn model, he would rather live his life than run after it. he wants to feel good and celebrate with friends and family and take care of business and have the joy of all that until that doesn't work, and then we will have hospice here at home and all usher him over. i am fully in support of this decision-- we all feel good about it--
there is no cancer warrior game to play, we have other things to do with the time we have--fighting for fight sake gives very little return--so please understand that-- we are not in the pep talk realm-- the CT scan was immensely clear that there is nothing to "go for"-- except beauty and joy and time together.
so we are going to celebrate and enjoy each other and laugh and cry and drink champagne for now and do what we can
and then when soup and low voices are in order we will do that too.
we love and value each and every one of you.
we look forward to your support-- -
email remains the best still but things will have an odd normalcy now and evenings are good to come by for now. we will just play it as we go.. do check in by email if you'd like
sofie is fabulous and clear and she says she'll be around until we all make her sick and then she'll head out to be with friends-- we came home and all sat together and talked it all thru together and then had a good lunch at the Grand Luxe and tonight Sof and T will watch some football together and hang with whoever comes by
so we are good
and we are strong and we are full of life and living
and we know you are too
feel free to pass this info around
and we hope to see you or talk to you when we can--
me being the curmudgeon i am and
t enjoying the fruits of his life-- your friendship and love and support
to the next months of adventure
sofie needs to get school work done
and we all have jobs to do
much much love
s
hello family and friends
hope this finds everyone well and readying themselves for the new year
we are facing a new challenge in our family and we wanted to let you know about it now though our information is basic. sorry that we have to do this via email but phone calls are a bit difficult at this point.
tony had been experiencing some difficult breathing and health problems in the last few weeks-- tho the heart arrythmia problem has always been the thing that we thought would be of most concern -
we were very surprised to learn that he had developed fluid on his lungs which was initially identified as pneumoniaa bout ten days ago
the fluid was drained and no bad elements were found but we proceeded to biopsy because a CT scan showed some distressing mass and a background akin to van gogh's starry starry night--
we were also surprised and distressed to find yesterday after the major lung biopsy here are cedars that his right lung is full of cancerous tumor. actually the wuote from the throacic surgeon is "sheets and sheets of tumor"--- we know very little more at this point in terms of prognosis or treatment. today we have a confirmed diagnosis of mesothelioma-- the asbestos cancer-- usually the gift to construction workers or Steve McQueen clones-- but now confirmed as filling the right lung of my handsome husband. go know----
so.. he is now resting and healing from the biopsy and should be home from the hospital by monday or tuesday.
we will meet with the oncologist on thursday and then we will begin to get more of an idea.
mostly -- tony wanted you to know. he is fine, clear eyed and clearly seeing every and all parts of the equation and we are taking everything exactly one moment at a time
please feel free to tell whoever might need to know--, and if anyone has an email for robin lent or leann sandefer,tom o'rourke, bill lustig and bob waks--we'd would appreciate that.
i won't be answering the phone too much in the next few days but email is always good-- we are surrounded by lots of loving friends and very smart doctors and now we need some prayers
hope to be in touch with everyone soon
once he heals from this surgery --visits probably welcome
to be continued
much love
susan and tony
January 3/08
hello everyone
well-- thanks are just a part of what everyone in our full and lusciously endowed community deserves. just know how important that love and light stuff really is--
the beauty and support of every shoulder and every sigh does really ease the load so count on me when your time comes-- because we know these times come to us all, one after the other.
and here is where we are today.
mostly tony and sofie and i are solid and strong and enjoying the true weirdness of living and its violent perfection
t and i went to the doctor today. the oncology center to the stars complete with cappuccino and cocoa makers . felt like willy wonka and the chocolate factory with a great deal of living happening in every corner. they strike just the right note. but we won't be spending much time there.
the cancer is now clearly in Tony's left lung as well as the right. the liquid excreted night before last in the ER was indeed pleural liquid giving us a preview of this fact. options were limited to us. surgery , awful and not an option since it is spread. chemo would extend his life perhaps a month or two at best-- and those months full of poison pumping and hours in a clinic with IV's and phosphoresence-- why rake muck, as buber says-- when we can be stringing pearls to the delight of heaven.
bottom line is. anywhere from 6 months to a year at the outside if we are lucky.
at this point and ths may change of course--
tony has decided that, after the fabulous evelyn model, he would rather live his life than run after it. he wants to feel good and celebrate with friends and family and take care of business and have the joy of all that until that doesn't work, and then we will have hospice here at home and all usher him over. i am fully in support of this decision-- we all feel good about it--
there is no cancer warrior game to play, we have other things to do with the time we have--fighting for fight sake gives very little return--so please understand that-- we are not in the pep talk realm-- the CT scan was immensely clear that there is nothing to "go for"-- except beauty and joy and time together.
so we are going to celebrate and enjoy each other and laugh and cry and drink champagne for now and do what we can
and then when soup and low voices are in order we will do that too.
we love and value each and every one of you.
we look forward to your support-- -
email remains the best still but things will have an odd normalcy now and evenings are good to come by for now. we will just play it as we go.. do check in by email if you'd like
sofie is fabulous and clear and she says she'll be around until we all make her sick and then she'll head out to be with friends-- we came home and all sat together and talked it all thru together and then had a good lunch at the Grand Luxe and tonight Sof and T will watch some football together and hang with whoever comes by
so we are good
and we are strong and we are full of life and living
and we know you are too
feel free to pass this info around
and we hope to see you or talk to you when we can--
me being the curmudgeon i am and
t enjoying the fruits of his life-- your friendship and love and support
to the next months of adventure
sofie needs to get school work done
and we all have jobs to do
much much love
s
Wednesday, January 9, 2008
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.
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.
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