for today.....

I am excitedly waiting for tonite as i have a date with Christopher to attend the BellarmIne H.S. production of Urinetown....which will be my 26th !!!!! year in a row attending the spring musical. My friend Tom always works miracles with the young people as he did when tim and chris performed those many years ago.....and it always fills my heart and soul with such joy.....
because i haven't had a good day yet, i am repeating this affirmation over and over all day so that i will feel good enough to go.....join me in this prayer....
I AM CALM.... I AM PEACEFUL... I AM WELL.....

asparagus

how can a plate of asparagus
be cause for dismay?
i so was craving fresh asparagus
and pasta
so thought i'd try
my first attempt at cooking in 2 weeks
a pot of boiling water
and a quick stir fry....
it's over
and tasted wonderful
but the process wore me down to a frazzle
a heavy pot and 1 arm don't go together
so i improvise the lifting of the pasta
from the water
cutting for stir fry
monumental....
it's over
and tasted wonderful
wobbly and weak
it's over and was wonderful....
1 tiny step
forward?
or backward?
as it landed me down, down, down once more

joy joy joy...

an oscar party complete with pizza...
we all got together to watch the fluff and fun....the little boys seemed to like the "grownup" show....mostly the dancing and commercials...and eating pizza on the family room floor.....
i didn't get an outfit for the occasion.... thought the bald head was outfit enough....

i am sad to the bone……
hurting and aching so deep
wanting and wishing this were over
wanting and wishing a walk in the rain
wanting and wishing to dance just 1 dance
this ache seems endless
tho it won't be
this fatigue forever
and it isn't
this long day
so far without a note or voice
drags on
in silence
most have no words for these
kind of words
those of sadness
those colored gray...
instead pretty is easier
pictures of blossoms
and sweet little boys...
well some days
are not pretty
little boys far away
blossoms invisible
through the tears
so i'm trying to surrender
to what is real and true
sad to the bone

morning

a 3 minute walk around the yard wears me out
and trying to take a picture with one hand
is yet another struggle
i'll rest again and hope
for more strength
the yard is barren with hope
waiting for the new life to come
the roses that i miss so much
have the tiny sprouts
that will bring the lush and beautiful soon
the tiny violets, remnants of my childhood
lay quietly in the cold ground
i can't bend to pick them
so will put that on the list
for a visitor
i want their beauty near me
to remind me of life to come
the clouds float by my window
sun is shining brightly after the rain
i will breathe in the new day
and pray for sunshine in my heart....

drifting

gray clouds drift overhead
waiting for the rain
and here where i mostly lay
i am drifting in gray
rain falling in my heart
wanting to walk, dance,
read,write,paint,clean...
but none of it can happen
the weakness has a deep hold
on me
grayness wraps around me
shaky and scary
most of the day
hours pass
long and lonely
visits short as my strength
is limited but still they help
good food arrives daily
to feed my body
notes and calls arrive to feed my soul....
i am lost, worn out and weary
let me rest....

thank heavens for little boys

ronan brought his birthday cupcakes to share on sunday and even tried to put nana's wig on the stand.... not much luck...."too slippery"


ben came to visit today and listen to all his favorite stories
he was so busy, we had to stop and cuddle up and rest...
very very weak..... leg and pelvis pain bad but my soul is singing tonite with the sounds of little boys laughter...
1 more day is almost over....

TAXOL

they tell you there'll be leg pain
"moderate to severe"
different for everyone.....
they didn't tell me about the pelvic pain
that can go along with it
sharp
stabbing
grabbing me around the middle and down the legs
excrutiating
takes my breath away
so more tears
more drugs
and more prayers
that i can get thru this day
somehow...

darkness

shaking
sobbing
scared
trying to breathe
thru this pain and ugliness
new drug
new pain
new fears
new bruises from needles
beautiful sunny day
but my heart is gray and dark
birds are singing
and i can't hear their song
trying to let this be allright
not try to push myself
to deny this utter aloneness
and deep dark place...

new day new drugs

short update....shoulder very sore...so typing is hard...
yesterday the new chemo started... so to prepare they gave me massive doses of steroids to prevent allergic reaction.... also anti nausea drip....the 3 hour drip of Taxol... i was terrifed to start a new drug..what helped the most was having Christopher with me.... it felt very safe and he was right there to help me remember that there was a soft place to fall....
tim is going to come with me for one of the next treaments...
so now i look to see what this new drug will bring..it promises leg and back pain and numbing of hands and feet for some....... my prayer is i'm not among the some
i'm very hungover today and on the roller coaster of crying and crying....
i am grateful that i was able to get deodorant under the broken shoulder today...!!!!a big step!!!

Breathing with my iPod

Listening to my iPod yesterday, this song came up and helped me breathe a little easier for a moment. Not even sure what I think about angels, but I'll take all the help I can get stepping out on this road.

then it's one foot then the other as you step out onto the road
how much weight? how much weight?
then it's how long? and how far?
and how many times before it's too late?

calling all angels
calling all angels
walk me through this one
don't leave me alone
calling all angels
calling all angels
we're cryin' and we're hurtin'
and we're not sure why...

and every day you gaze upon the sunset
with such love and intensity
it's almost...it's almost as if
if you could only crack the code
then you'd finally understand what this all means

- k.d. lang & Jane Siberry

Click to listen
(MP3)

1 FINGER TYPING

quick update
shoulder break just needs to heal on its own...thankfully no surgery required...break is in the humerus and is small....healing time will take longer than usual due to compromised immune system.....so no driving for a while...!!!!!add more to the "this sucks " pile
oncologist says its up to me whether to have my scheduled treatment on thurs..... i chose to say yes ...she says i'm a "trooper' - maybe i'm just crazy !!!! as it's a new drug for the next 4 treatments and i have no idea about its side effects....
BONUS - family & friends are bringing great food!!!!
if you believe in lighting candles, i can use all the light you can send

by the way... do you know about this...when you get to the site, click on "LIGHT A CANDLE"
http://www.gratefulness.org

Unfathomable Universe

WTF!?!!!???

Yet another hurdle (and I never did take track).

A short trip to the driveway and down I went, resulting in a broken shoulder. So pain and immobility reign for the near future.

Postings will be short, intermittent, and slow. Can't use the mouse. Can't type. (My son Tim is taking dictation and doing the research for tonight) Can't search through 12,423 pictures on iPhoto.

So here's the last photos for a while --from yesterday's lunch outing. Wasn't sure folks were ready for the Melissa Etheridge look, so donned the red locks.

The caption only makes sense to those of you who remember 1950's TV commercials.

"WHICH TWIN HAS THE TONI?"











Will try to keep up with two fingers and lots of courage.

DAILY VISITORS

These critters greet me each morning outside the family room window with their antics and "stealing" the bird's food... they risk climbing and jumping not knowing if they can reach and often fall to the ground only to get up and try again.... reminds me of a Japanese proverb.... fall down seven times, get up eight.... so today i get up again.....

OH AND I FORGOT

The back and leg pain from the neulasta shot....

CRYING IN THE RAIN

Some day when my crying’s done
I’m gonna wear a smile and walk in the sun - Everly Brothers"CRYING IN THE RAIN"

I don’t cry often enough
Am so used to holding it in
But this morning I let it out
And have cried and screamed
most of the morning
I have an errand to do
And can’t find the strength
or steadiness
To do it
A shower had me shaking
Getting dressed weak
A new symptom
Has reared its ugly head
The nausea
I had heard about
And thought I’d missed….
It showed up a few days ago
I thought it might be
Something I ate
But alas
It has hung around
Day and nite
As a queasy, ugly
Sore, sour
Stomach….
Add that to the
“chemo eyes’
watering and stuck together
the skin that itches and hurts
the overwhelming fatigue
the scary anxiety
and I deserve to scream and cry

REMINDER

Trying to remember......

UPON WAKING....

upon waking
my head is spinning with ideas
things i want to do
i want to plant a rose bush
pull the weeds
clean the bedroom
sing and dance
see my little boys
listen to their stories
revel in their laughter
drive to the ocean
go to the mall
knit something new
read a book
and then i realize
none of it will be
the simple task of frying an egg
sends me back to bed
then hours later
a short shower sends me back to bed
sharing soup and bread
sends me back to bed
shaking and weak
exhausted and worn out
the rose bush, the weeds
the ocean
the book
and all of it
are only wishes
that can't come true today.....
and so back to bed to rest
and heal becomes what's real
for now.......

DOWN, DOWN, DOWN.........

The worst fatigue so far....except for a brief visit from Tim and Liam Sun a.m., i was in bed all day and today is no better....i just can't move...i barely have energy to eat....
this really sucks......

TWO DAYS AFTER a TREATMENT

9:30 a.m. Mountain View
a half hour drive
"exercise for energy class"
90 minutes
slow moving
arm circles,
leg circles
tiny weights
small stretches
yet today all of it was excrutiating
every leg lift
feeling like a thousand pounds
every arm circle taking way more strength
than i had
tears rolled down
as i carefully did a few of each
all the while wanting to be back in bed
my body was screaming
my heart aching
wanting to do this
thank you body
for the little you were able to do.....
now to rest........

Steven Levine noted poet, author and spiritual teacher in the field of grief once held up his forefinger and thumb just slightly spread and said..."just this much...you only have to meet just this much....."

SOMETHING I NEED TO REMEMBER WITH EVERY BREATH....

GOODBYE MOLLY IVINS

FROM VARIOUSO ONLINE SOURCES.... there are many... do read about this brilliant woman....

Ms. Ivins death on the day after the news came out that Bush has again cut the cancer-research budget is particularly ironic

Molly Ivins was the first female political columnist to ascend from the trenches to become a star. In a profession dominated by self-important and uptight males, she was like a shot of Irish whiskey. Bracing and smart. But best of all she was tough and unafraid. She said what she thought and didn't apologize for it. She spoke for people who didn't have a voice. She was proud of being a liberal. Who else would have thought to call the Commander in Chief, the ersatz cowboy in Crawford, the self-described "Decider" "Shrub"? Ouch.
Even as she lay dying she continued to attack Bush's policies in Iraq.
Here is what Ivins wrote on January 11:
"We are the people who run this country. We are the deciders. And every single day, every single one of us needs to step outside and take some action to help stop this war. We need people in the streets, banging pots and pans and demanding, 'Stop it, now!'" __We also need a courageous bunch of Senators, ones who are willing to stop thinking about 2008 for a half second and take a stand. That's something Molly Ivins understood.
Now if only she were here to see it through.

MOON

I can't believe i caught this glimpse moments ago through the trees on the patio...in a second she was gone again behind the clouds...

as i write tonite
the full moon shines through my window
looking close enough to touch
the heavy clouds play hide and seek with her
as she moves like a dancer
across the night sky
the fullness is amazing
the brightness sublime
and I am grateful for this moment
of beauty....

TREATMENT DAY

today is the half way mark...and is still a day of such emotion and trepidation.....

morning bird songs the same
coffee ritual the same
shower, get dressed
don the flowered hat
check my healing bag
for all the treasures to take with me
stones, sticks, cards, notes,
music, teddy bears, shawl
check the ipod battery
all the while feeling shaky, unsteady
waiting for marilyn
her hug
her big truck
her unfailing comfort and support
then the ride to the treatment center
my body knowing the next few hours
will be hard, terrifying, anxious, unsteady
up the elevator, trembling
holding on
called to the lab hoping the count is high enough
for treatment
sigh of relief when it is....
into the room to see the dr
tender angel
talks me through the new symptoms
reassures me gently
she sits close reaches out
tells me that she loves my hat
tells me i am brave
tells me i am doing this so well
tells me i am getting through it
tells me she is proud of me.......
then she walks ahead of me
down the hall
to the treatment room
where i connect with this new "family"
all in chairs, old and young
hooked up
sleeping and awake
reading and writing
wrapped in blankets...
the tears were falling
as i enter into this place of
bags dripping,
syringes on trays
toxins dripping into arms and ports
doing their work....
i cannot relax
my nurse is gentle
searching for a good vein
she tenderly says
"it's going great here
we're in...it's all good right now..."
as the pain shoots up my arm
bags attached
and the tears
pour down
dripping all over me
as the dripping above begins
entering my body to go after
any "bad" cells...
she says
i'll get you some tissue
i say
no
please don't
i need to feel the tears
let them drip and flow
wash over me
cleanse
heal
help me face the fear
and grief
that lives in me today...
ipod brings me affirmations
soft music
sad music
dance music
not really calming me
for here in this place
i come to feel and hear and see
the truth of my body and soul's struggle
that is mine for now...