HAPPY MAY DAY !

Chase a butterfly, smell the flowers, run with the wind....
see, smell and taste the beauty of the spring...

WORDS TO HOLD ONTO...

The Good News

They don't publish
the good news.
The good news is published
by us.
We have a special edition every moment,
and we need you to read it.
The good news is that you are alive,
and the linden tree is still there,
standing firm in the harsh Winter.
The good news is that you have wonderful eyes
to touch the blue sky.
The good news is that your child is there before you,
and your arms are available:
hugging is possible.
They only print what is wrong.
Look at each of our special editions.
We always offer the things that are not wrong.
We want you to benefit from them
and help protect them.
The dandelion is there by the sidewalk,
smiling its wondrous smile,
singing the song of eternity.
Listen! You have ears that can hear it.
Bow your head.
Listen to it.
Leave behind the world of sorrow
and preoccupation
and get free.
The latest good news
is that you can do it.

— Thich Nhat Hanh

REALITY

the following are just a few references to fatigue as a side effect of chemo....... the more i read the more i realize that a lot of people including doctors don't take it seriously....which some days makes me think i am crazy..... I AM NOT....THIS IS REAL...
1-
The identification of fatigue as the most frequent severe symptom in people undergoing cancer treatment in the United States occurred in 1997. It was a rude awakening for us because we found that we had not been working at all on the problem that most drove quality of life for cancer patients. A lot of work has been done since then and only a little bit of progress has been made. So maybe we should review that first.
2-
"What a difference it would have made if my fatigue had been acknowledged! .... What a comfort there would have been ... in knowing that my exhaustion was being monitored." Maureen Gilbert. A Survivor's Journey: One Woman's Experience with Cancer-Related Fatigue The Oncologist, 2003

3-
Fatigue and “Chemo Brain”
after Cancer Treatment

This article is a summary of the lecture presented on April 9, 2002.

It was not until recently that the problem of fatigue after a cancer diagnosis was taken seriously by the medical profession. Although patients have complained for years of extreme reductions in energy during and after treatment, no one really understood that this was such an important factor in quality of life for patients. A survey of cancer patients several years ago reported that 32% reported debilitating tiredness every day, 21% on most days and 14% at least once a week. Only 20% reported that they hardly ever experienced debilitating tiredness. Twelve percent of the patients sampled in the survey actually said that they would rather be dead than have the severe fatigue that they were experiencing. This is an alarming statement about how disturbing this condition is for patients. Fatigue interferes with work, physical well-being, the ability to enjoy life, emotional well-being, intimacy with partners, caring for family, relationships with friends and increases concerns about survival.

LIFE AS IT IS....

as it is
my life has become bed, email, google news,
cable tv, watching birds at the feeder
and then the same all over again....
a shower means back to bed to regain strength
watering a plant the same
i want this to end
i want to get up and go
go visit my little boys
play with them
run and jump with them
have them here for sleep overs
treat them to french fries
watch them shoot a basket
swim in a pool
dance and sing with drums and flutes
want this fatigue to be gone
so i can have a life
with dancing
a trip to the beach
planting a rose bush
gathering flowers to perfume the house
i am tired
of tired
and for now life as it is
sucks.....

very disappointed :-(

test results took a long time.....but follow up to the initial thyroid test don't seem to pan out for thyroid problem.
my internist will see me tomorrow to recheck some issues - stomach pain - fatigue - excessive sweating most of the day....changed clothes 3 times today.....
something is wrong.... and i am very upset that we couldn't "blame" the thyroid so far....
she says that many of her patients that have had chemo "suffer" side effects for many months after even tho the oncologist doesn't tell you that....so she tends to think chemo is the culprit....that my body is having a really hard time with the aftermath....
we will talk some more tomorrow
meanwhile, it's just another awful nasty day......
3rd radiation treatment today - still causes anxiety so it's no "piece of cake" as it has been for some others.....
the physical therapy for the shoulder makes it really sore for laying on the table....and my anxiety level is still really high.....

A POEM

I may have posted this before but feeling low, it is worth my reading and sharing it again....

LOVE AFTER LOVE

The time will come
when, with elation,
you will greet yourself arriving
at your own door, in your own mirror,
and each will smile at the other's welcome,

and say, sit here. Eat.
You will love again the stranger who was your self.
Give wine. Give bread. Give back your heart
to itself, to the stranger who has loved you

all your life, whom you ignored
for another, who knows you by heart.
Take down the love letters from the bookshelf,

the photographs, the desperate notes,
peel your own image from the mirror.
Sit. Feast on your life.

— Derek Walcott

1 down !

my friend took me today.........I made it thru the marking xrays ..... despite my ipod dying on the way to the treatment center...not a good start....but i breathed and talked to myself about the fact that i could do this simple procedure.... the first time with the films worked...the technician wanted to be helpful so said she had some relaxation music and put on john tesh !!!!!!!! i can't stand him.....so asked her to please shut him off.....finally ended up with enya - a little too loud but better than nothing....
they asked me if i wanted to go ahead with the 1st treatment as long as i was on the table....so i decided to do the extra few minutes....
tried to go to lunch on the way home but got really nauseous so had to pack it up to take home...not sure what the nausea is about.....
no test results back on the thyroid....they called to say they would not be ready till Thursday.....
damn.....i want to find out what is going on....
1 down......29 to go....

XRAY EXPERIENCE

thankfully christopher drove me for my xrays needed before radiation begins ....between my broken shoulder and panic attack, things didn't go well.... 2 films needed to be redone and i had a meltdown before they could do the 3rd one so had to reschedule the whole procedure for tomorrow. just the positioning took forever and was a nightmare.....
hopefully knowing what it is....huge machines - laying still with my arm over my head and barely breathing, i will fare better...the choice of music didn't help as "mac the knife " and other jazzy, upbeat songs blared....
they said i could bring my ipod and earphones so i will make sure my music is soft and gentle....
i was anticipating a simple fast experience and it turned out the opposite so i will try again tomorrow.
trying hard not to beat myself up for not being able to do it and to say that it's just OK....
it postponed my first radiation treatment for one day....

TINY STEPS

I made myself go for walk just to the corner....here is what greeted me at the end of the driveway.... these take my breath away and are now at my bedside filling my room with beauty....

WHERE IS MY LIFE ?

it is sun late morning and i forced myself to get up, eat a little and check email...i have been in bed and mostly sleeping since fri afternoon.... i didn't know one body could sleep so much....
i am without any energy at all...
i am scared of this fatigue and worry about radiation bringing more.... more seems impossible at the moment....
my internist and the little i read about hypothyroidism say that fatigue is one of the main symptoms. i hope the extra tests she ordered will be back quickly so as to treat it if that is what I am experiencing....
i also hope that the preliminary findings won't affect my radiation treatment which is suppose to start tuesday....
monday is the "simulated treatment" so i guess i will have to talk to them about the blood test findings....
this is just awful.....

NASTY DAY

Another nasty day.... stomach issues - diarrhea - feeling lousy
was supposed to go to lunch with friends but didn't go....
Had some lab work done on wed when i went to see my internist for medication review
tests came back showing hypothyroidism - which is adding to or causing a lot of my symptoms....could be chemo related or just coincidental
i need more tests to get more info and see how to treat it....
is there any end...?
so one more day waiting for a "good day" which hasn't happened....

3x'S a CHARM ?????

for the 3rd time in a week out of the blue people have said to me:
"Wow ! you really look wonderful...."
a friend who visited on sunday said it.... the dr on monday said it and today a friend brought lunch and said it.... and added - there's a sparkle in your eye....
and there i was in all cases with no hair, no head covering, no eyebrows, no eyelashes....AND not feeling good....
Not sure what that's about , but wish i could believe i have some kind of sparkle even tho i feel so rotten and have so much pain.....
what are they seeing that i cannot feel.....

WIPED OUT

yesterday's procedure did me in so today i just rested most of the day....except for the plumbing issues with the kitchen sink and having lunch with a good friend who brought it to me....
the universe is sending some kind of water messages which i don't understand....just in less than a week - the water heater leaked all over the garage and needed replacement, the sprinkler timer is totally screwed up and a repair person didn't fix it correctly.... and the the kitchen sink backed up.....!!!! WTF???
physical therapy was only a short time as i cannot yet do most of the exercises....
i can't imagine being even more fatigued which is what they promise radiation causes.

HIGH ANXIETY

I always wanted a tattoo but not necessarily the way i got a few today.... it was mark-up day where they do a CT scan and mark the areas to be radiated....tiny little dots that are permanent tattoos....
i did make a mistake in going alone as my anxiety level was really high because of my broken shoulder and also a new medical procedure also raises my panic attack threshold....being in that donut hole even for just a little while is something i can hardly stand.....
Of course i made it through....with lots of encouragement from the nurses and technician who kept telling me ..."you're stronger than you think.... relax"... etc...I forgot my ipod which may have helped...just wish i could get thru these things with less anxiety and trauma...
my shoulder is hurting a lot and i'm left with a pounding headache....
one more day - one more step - and I DID IT .....
a new journey begins.....a simulation on monday and treatment begins tuesday for 6 weeks -5 days a week....

NEXT STEPS

a visit to the orthopedic dr today checked the healing of my shoulder....he says it's going along - more slowly than usual as my immune system is compromised but it is on its way....range of motion is pretty good....but still not able to lift my arm - strength building has a long way to go....
Visit to the radiation oncologist also today ....i like him a lot - he is a very sweet, gentle man....
they will"map" the area tomorrow - an hour CT scan to tatoo the precise areas to be radiated....he is confident they can do it despite the pain and immobility of the shoulder... told me to take a double does of pain meds....
here's hoping i can get through it without too much pain....
the 2 appointments sure wore me out....
still dealing with chemo side effects.... awful fatigue, back and leg pain, a few mouth sores and scaly really itchy skin......

MORNING BEAUTY

I am still astounded by the beauty of the first bloom of my roses and even more astounding are the pictures i can get with my little inexpensive coolpix...... the shadow was just right this morning.....i think this may call for a framed print....

There it was this morning
Pink lush blossom
Opening to me
Greeting me in the fresh air
Bringing tears
And awe
Love and peace
Miraculous in its beauty
Such is love
Gentle to touch
Such is love
Delicate to hold
Such is love
Warms my heart
Such is love
Fills me with joy
Such is love
Tenderly captures my soul
So does love
Leaves me breathless
So does love

3 Little Boys at Nana's

more belated easter fun...easter egg hunts , storytime and underwear races through the house....
an absolutely joyfilled day - pain, fatigue and all....
i am waiting for the day when i can join them in the running - although it certainly won't be in my underwear !!!!

RAINY DAY EGG HUNT

the eggs had to be hidden in the house....but they didn't seem to care...of course an hour later the sun came out...!!!!

Joyful Day

I made it thru the pain for today.....

PAIN SUCKS

the 1/2 hour PT session was only about 15 minutes as i could barely do hardly any of the exercises.... my shoulder is so weak and painful - so far cannot lift it at all....hand and finger movement are fine but from the elbow up it's pretty well stuck.....I spent most of the PT session in tears...the therapist says i'm doing ok but it's hard to believe when it feels so slow and difficult....
also the back and leg pain is pretty bad. I finally decided to go back to the rx pills at a higher dose which i hate doing but it does at least take the edge off.....
my legs are feeling quite weak.... today i went to lunch with some friends and took my cane for safety and security...my legs feel like jello..at this rate, it feels like a really long road to stamina......
tomorrow i see my little boys so am looking forward to much joy amidst the fatigue....

PAIN

Today has been a really hard day with pain.....not sure why it's worse today....
back and legs are in pain that is literally making me sick..... pain meds are not helping
sitting, standing, lying down..... nothing helps.....
i'm really discouraged....

BEAUTIFUL WORDS

I LOVE THIS POEM I FOUND THIS MORNING......For me the Beautiful One is not named God or HE..... I was going to change the language, but I left it in some kind of deference to the poet HAFIZ who by the way may or may not have used that language as his work has been translated....

You have not danced so badly, my dear,
Trying to hold hands with the Beautiful One.

You have waltzed with great style,
My sweet, crushed angel,
To have ever neared God's Heart at all.

Our Partner is notoriously difficult to follow,
And even His best musicians are not always easy
To hear.

So what if the music has stopped for a while.

So what
If the price of admission to the Divine
Is out of reach tonight.

So what, my dear,
If you do not have the ante to gamble for Real Love.

The mind and body are famous
For holding the heart ransom,
But Hafiz knows the Beloved's eternal habits.

Have patience,
For He will not be able to resist your longing
For long.

You have not danced so badly, my dear,
Trying to kiss the Beautiful One.

You have actually waltzed with tremendous style,
O my sweet,
Oh my sweet, crushed angel.

OUCH !!!

Physical therapy for my shoulder started today - a necessity if it is to be strong enough for the radiation to begin as the cancer and the broken bone were on the same side....
The therapist will come 2x weekly and every day i am to do the exercises....
today i only lasted about 15 minutes.....the pain was hard and my stamina is below zero....
we walked around the corner - not too far....
The back and leg pain from Taxol is still hanging on pretty strongly so am having to resort to rx meds..... not something i want to do....
for now i am just one big pain puddle.

my radiation oncology appt was cancelled today - dr got tied up in surgery.... was really disappointed as i am anxious to see what will be happening when....
here we go again not living in the moment....
my life's work and always struggling with it.....

You gain strength, courage and confidence by every expierence in which you really stop to look fear in the face. You are able to say to yourself. "I lived through this horror. I can take the next thing that comes along." Eleanor Roosevelt

METAMORPHOSIS

This poem seemed appropriate today as i felt good enough to go out to lunch - although quite tired .... the back and leg pain is really strong and tylenol just doesn't help it....i may have to try pain meds again.....
I meet with the radiology oncologist tomorrow to talk about how the next path on this journey might work....

Metamorphosis
by May Sarton

Always it happens when we are not there —
The tree leaps up alive in the air,
Small open parasols of Chinese green
Wave on each twig. But who has ever seen
The latch sprung, the bud as it burst?
Spring always manages to get there first.

Lovers of wind, who will have been aware
Of a faint stirring in the empty air,
Look up one day through a dissolving screen
To find no star, but this multiplied green,
Shadow on shadow, singing sweet and clear.
Listen, lovers of wind, the leaves are here!

REBUILDING STRENGTH

DAY 2 without stomach symptoms...still a lot of leg and back pain but am feeling an ounce stronger....drove to an appointment - did OK - but did get tired....
I got real brave today and signed up for a free class that will be at my nearby YMCA beginning at the end of April sponsored by the Cancer society...
it's a big commitment, but i am determined to build my strength back up so i will be able to dance....

RESURRECTION !!!

I ROLLED BACK THE STONE.... and DROVE to the corner drugstore...

close to home - not too many turns... my arm still doesn't move well so was very careful......

the script went like this!!!!

-I woke up today - without a stomach ache or any signs of "bug" - was really hungry
-had an egg sandwich for breakfast without symptoms
-a little soup for lunch without symptoms
-had a craving for pasta so ordered my "easter dinner" online from a great little take out place nearby
-got there to pick up and it was closed....
-salivating for pasta went across the street to Trader Joes' thinking i could find something that resembled pasta.....as i drove up it was closing early !!!
-desperate and hungry -went across the parking lot to a great italian restaurant to order a take out dinner and it was nearly empty so decided to stay and eat.
-it was incredibly delicious - although lonely. (I was wishing each of you were sharing it with me....)
-i took a lot of it home with me as each minute i was waiting to not feel well and have a bout of the "bug"
-so I ESCAPED !!!!!! out of the house - on my own and not feeling sick !!!!!
-hope the stone will stay back from the tomb....

A L L E L U I A

JOY

ALL THAT IS JOY

Let all the strains of joy mingle in my last song —
the joy that makes the earth flow over in the riotous excess of grass,
the joy that sets the twin brothers, life and death,
dancing over the wide world,
the joy that sweeps in with the tempest, shaking and waking,
all life with laughter,
the joy that sits still with its tears on the open red lotus of pain, and
the joy that throws everything it has upon the dust,
and knows not a word.

An Excerpt from Tagore: The Mystic Poets by Rabindranath Tagore

The devotional mystic poetry of Rabindranath Tagore has endured through the years. Here is a poem on the spiritual practice of joy.

Alleluia ???

in the midst of resounding alleluias today in many circles, i am reminded for some reason of the work of Stephen Levine - renowned spiritual teacher in the realm of death, dying and grief.
He has written many books and has many tapes with his wife Ondrea. You might be interested in reading about his work as there are lots of resources online.
Because all of us are not out of our tombs and have such difficulty rolling back the stone on this Easter morn, I take comfort in remembering some of his words I have heard and read over the years...
-when he speaks to someone coping with some challenge, will place his thumb and forefinger apart slightly and say:
'

"Just this much....you only have to meet just this much..."

-and from his latest book

"Feelings of loss don't go away; they go deeper......."

-I like the mantra he suggests for those who are unhinged by chronic sorrow:

"May I get the most out of this possible."

just when you think.....

diarrhea back with a vengeance....i'm a zombie from no sleep..called the dr.... a waiting for 2 rx which my sister is picking up.....they still think it's a bug - i think it's the chemo....bugs don't tend to come and go.... they hang around... stomach had calmed down thurs and fri.....
i am soooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo tired of this....i'm certainly in no alleluia mood.....

1 hour at a time

sometimes it's not even one day at a time....
today i took these baby steps....

• had 3 small meals for the first time in 5 days - stomach still hurting
• walked around the corner (not the block yet !)
  
• only took tylenol instead of rx pain meds
  
• watered 3 plants
• picked this exquisite rose ....it is the most amazing fragrance next to my bed...
  I'm trying so hard to validate these tiny steps.... i so want to have the strength do do more....

BEN'S BUS RIDE

Ben is going to a special class every morning to encourage his communication and social skills... the Oakland school district provides the bus from the house to "morning school" and then takes him to his pre-school for the afternoon. He likes going and mommy and daddy say he looks forward to waiting for the bus each morning...this is the first time the bus came to the house.....I have watched it over and over in amazement of his bravery at the ripe old age of 3 and 2 months...!!!!!
Give it a couple of minutes to download....after you click on the word BUS

SUCH BEAUTY

this just arrived from my friends charmiel and jim in austin tx..... i have never seen the likes of such an arrangement....!
i am still pretty flat out and not eating, but this surely brought blessings and peace and all the new life of and promise of easter to which i'm clinging desperately.....

another day

another
l___o___n___g lonely day
alone
weary
weak
missing out on life
pain
numb fingers
stomach a mess
not wanting to eat
trying hard to drink
too tired
to even pick
a lilac blossom
where in the hell
is the turn in the road.....

on and on

vomited all nite.....terrible stomach ache....now this morning diarrea....
called the nurse as i can't eat anything....
she thinks i have a bug or food poisoning and have to ride it out...
said to come in if i feel dehydrated...not sure what that looks like....
this sucks....

when will it end?

so now what is this????
nausea and vomiting on top of the pain....
is this suppose to be the last hurrah???!!!! this taxol is ugly stuff......
what a horrible day and nite and it isn't over.....

THE WORST

yesterday was the worst day i can remember so far....i guess the Taxol is cumulative....
i've never had such pain and my legs are really weak. .. i barely got up to eat... and then didn't eat much...
today isn't much better..... still a lot of pain and now i'm loopy from all the pain pills....
as they say....it ain't over till it's over....
i sure wish i could have a good day....

THE MONSTERS

The pain monsters have arrived.... the Taxol leg, pelvis, back and arm pain has set in big time.....double doses of pain meds really don't help...it is such a beautiful day and i am sad that i can't be working in the yard or going for a walk....
i will try walking a bit....
yesterday was lost... pretty much in bed all day with exhaustion and pain....
Physical therapist did come by for the initial visit to begin rehab on my shoulder..... the exercises have to be daily on my own and she will come 2x weekly
i miss my little boys....

FULL MOON

I caught these just at the right moment 5 minutes later she was gone.....

Tonight as I sit at my desk,
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
it reminds me of hope
and the light to come
in more peaceful days ahead...

NEXT STEP

first of all .....rest
a break before the 30 days of radiation starts.
the first thing that has to happen is that my shoulder needs to heal enough to hold it in place over my head for the mapping and tatooing needed to set up the radiation.
right now that is impossible so i will start physical therapy - hopefully tomorrow 3x weekly here at home...
there was some question about coverage as i do not fit the medicare definition of homebound but the dr and physical therapy lab somehow worded it so they gave an electronic approval... hopefully there will be no issues.....
the more i move the shoulder the more the pain so along with the taxol back and leg pain i expect the next few weeks to be one big pain mess.....
i dread drugs so hope i don't have to take a lot of pain meds....
i do want to get on with the treatment so it can be over.....
so for now it's rest,limbo and more waiting....

TONIGHT

exhausted
worn out
let down
long day
many drugs dripping
slowly
heart racing from steroids
little sleep last nite
waking up to terror...
tonite
no exhilaration
no jumping up and down
just some kind of relief
somehow my body
feels peaceful
calm
at rest
i guess it knows
better than i
that this part is over, finished, complete
and now it needs to prepare
for the next path on this unknown journey....
blessed
grateful
peaceful
loved
tonite....

today...

hooray for me!!!...........i did it !!!

Tim was with me for my last chemo treatment - i know he made it easier
my body was more relaxed - they found a vein easily...
for today - what a great relief.....
this part of the journey is OVER....!!!!!

tomorrow

as is my typical self - i am not living in today but already stressed about tomorrow....
i "should" be excited and happy that it is my last chemo treatment yet for some reason i am weepy and shaky thinking about it...
everyone else is excited that it's over... i am still in the throes of the side effects which won't be over for who knows how long....so have not gotten to the excitement level yet....
my prayer for me today is to just be in the now and let tomorrow come when it comes.....
Corita Kent:
Love the moment. Flowers grow out of dark moments. Therefore, each moment is vital. It affects the whole. Life is a succession of such moments and to live each, is to succeed.

GRIEF

There are some griefs so loud
They could bring down the sky,
And there are griefs so still
None knows how deep they lie.

--May Sarton, "Of Grief"

MISSING

some days the missing is overwhelming
then i have to remember
what i taught others for many years
as a grief educator and counselor....
Grief is a natural response to loss
it ebbs and flows like the tide
whirling us in spirals....
dragging us down into its undertow
today i am missing...
- seeing my little boys as often as i wish
- seeing my sons and their wives as often as i wish
- family and friends that are far away
- dancing
- driving
- working in the yard
- cooking my favorite foods
- freedom
- feeling good
- strength to do simple chores
- shopping
- the beach
- fingers that aren't numb
- legs that don't ache
- a stomach that will let me eat anything
- sleeping peacefully
- eyes that are clear from discharge and dripping
- a shower without a panic attack
- getting dressed up to go out
- sitting in the sun
each and all of these will become more possible
as the days go by
and treatment changes....
for now
i grieve and ache
for them......

INTOXICATING

look what the morning brought..... the first lilac bloom..... the smell carried me back to my childhood when the whole side of the house was a lilac hedge and everyone in the neighborhood had miles and miles of this beauty.....
it's early for the bloom.... and in CA i only get a few blossoms - nothing like the east coast but i am grateful and excited for this exquisite gift.....
a visit to the orthopedic dr today brought me a prescription for 6 weeks of PT in my home.... to build up the strength and range of motion in my shoulder.... I am so anxious to be able to use it more....
I will have more xrays in the next 2 weeks to see how the healing is going....he just told me to do whatever i can do with it...and WAIT..... not my strong suit....

MUD PIES ON SUNDAY

What a treat to have a little boy here running, jumping, chasing, singing, telling stories and his favorite - making mud !!!!!

today...

www.gratefulness.org
WORD FOR THE DAY
Saturday, Mar. 24

We must not wish for the disappearance of our troubles but for the grace to transform them.



Simone Weil

PAIN PIT

No one talks much about the pain associated with chemo..i do have a lot of the traditional symptoms - scaley skin, sometimes nausea, horrific fatigue, watery gooey eyes that prevent me from reading much, numb fingers, loss of hair etc....but what is really awful these days is the pain from the TAXOL chemo which for me has caused pretty severe pelvic, leg, shoulder and forearm pain - combined with the pain from NEULASTA...throw in the broken shoulder pain, the overuse pain of the other arm and i'm living in one big pain pit ....
I am taking pretty strong doses of pain medication but it only takes the littlest bit of edge off and doesn't give a lot of relief....In reading about this pain, many people have it continue for a long time after the last treatment...of course that plays into my fears for the future....
I long to be able to stay in the present and live in the moment.... but pain is a strong pull in other directions...

Thich Nhat Hanh:
Life can be found only in the present moment. The past is gone, the future is not yet here, and if we do not go back to ourselves in the present moment, we cannot be in touch with life.

SHE'S EVERYWHERE

At every turn, newspapers, tv, radio.... Elizabeth Edwards stands bravely to announce:
"My cancer has returned - treatable, but not curable..."
Such terrifying words to the 1 in 8 women and lesser #'s of men who are diagnosed with breast cancer....
I watched Larry King's show last nite - very scary to watch but important information from survivors and Dr. susan Love the foremost expert on the subject....
this will continue to be a top story in the news so the fear level and insecurity will be raising its ugly head even more for a while to come....
it never will disappear but to have it right in my face is another dark shadow to face today.....
Blessed be Elizabeth and the hundreds of thousands unknown brave women and men who face this shadow in their lives......

Courage is being afraid but going on anyhow. ~Dan Rather

FEAR

I have lit a special candle this morning for Elizabeth Edwards and for all of us who face the rest of our lives with fear....
I cannot get her off my mind.....
please hold her and her family in your heart....how awful this is.....I can't even imagine how scared she must be....
me too.....

I send love to my fears. My fears are the places within me that await my love.

HAPPY EQUINOX

Ostara - Spring Equinox
The exact arrival of spring is marked by the Spring Equinox, the date when day and night are equal lengths. Depending on the year and time zones, this equinox falls between March 20 and 23. German pagans named the Spring Equinox after Ostara, their goddess of spring, fertility, and rebirth. In England, among the Anglo-Saxon tribes, Ostara was known as Eostre. The modern holiday of Easter is derived from the name "Eostre" and the associated myths. According to these myths, Eostre was a playful goddess whose reign over the earth began in the spring when the Sun King journeyed across the sky in his chariot, bringing the end of winter. Ostara came down to earth then, appearing as a beautiful maiden with a basket of bright colorful eggs. Ostara's magical companion was a rabbit who accompanied her as she brought new life to dying plants and flowers by hiding the eggs in the fields.
May you be blessed with fertility, abundance, success, and all things new!

DAFFODIL DAYS

My friend kathryn's mom, mary - a breast cancer survivor - who lives on the other side of the country filled my day with sunshine yesterday by sending these beautiful daffodils....
blessings and thank you for the hope and light they bring....
she participated in the American Cancer Soceity's Daffodil Days
I've never met mary, but her wishes and good thoughts are a reminder that there is an end to this nightmare....

early surprise
a short walk to the corner
and this early bloom
was peeking out
somewhat hidden in the leaves
of the rose garden
i almost missed her...
the walk was hard
body worn and weary
dragging each step
slowly
wanting to be stronger
wanting to walk more
wanting to have my life back
and then this invitation
to new life
and beauty
reminded me
i will be stronger
i will walk more
i will have a life back
i just wish it was now.......

DOWNHILL SLOPE

this taxol has caused a ride down a slippery slope of even more fatigue and incredible leg and pelvic pain.....nothing relieves it.... spring is just around the corner and Dancing with the Stars begins tonite but i am having a hard time looking forward to anything....the birds are singing outside the open window........i will try to hear their song.............
if i'm lucky, it's wash the sheets day - a huge accomplishment....

OUCH!
This back and leg pain are pretty bad !!!!



I'm not that scared of change, he told me once, I'm scared of looking stupid in the face of it. It's not going too well either, he added.

7 is no lucky number !!!!

treatment 7 has been the hardest.... guess it's cumulative....and the bone pain in my back and legs won't let up....and my stamina today is less than ever.... i didn't think it could guess much less.....
thankfully Tim, Deirdre, Liam and Ronan visited for the afternoon and evening to fill my heart with joy and hope......
i am blessed beyond belief with watching these wondrous little boys.....

ERIN GO BRAGH

translated Ireland Forever....
this beautiful plant was given to me by a friend and after this season will look beautiful in my garden next to my fountain...
I am listening to my huge collection of Irish music and as i mentioned yesterday-it's a mixture of joy and sadness....
my mother never liked being Irish as she grew up in a house cursed with am alcoholic mother and father and she only associated the irish with drinking....
to this day it makes me very angry that so many jokes, songs and cards play off the drinking aspect of the Irish.... alcoholism isn't funny and truth be told, it is historically true that the gene for it runs through centuries of the Irish people.....
Thankfully my grandmother, uncles, aunts and father enjoyed singing the "old" songs and i learned many of them as a young girl...
most of them still bring a tear....and of course since my childhood irish music has become very popular and there is much more to listen to.....
i don't celebrate the st patrick mythology - but can take these days to celebrate my ancestry and the beauty of the country and its people....my dream is to go to Ireland to celebrate my 70th birthday in 08... may my dream come true......
bridget goddess of poetry, healing and smithcraft is much more who i choose to celebrate but her feast - Imbølc has come and gone on Feb.2.....
Irish or not, i send you this Irish blessing:
May you have warm words on a cold evening
A full moon on a dark night
And the road downhill all the way to your door...

WORTH SHARING

This poem arrived in an email this morning and i thought it too beautiful not to share..... She is one of my favorite poets....check her out....


These shriveled seeds we plant,
corn kernel, dried bean,
poke into loosened soil,
cover over with measured fingertips

These T-shirts we fold into
perfect white squares

These tortillas we slice and fry to crisp strips
This rich egg scrambled in a gray clay bowl

This bed whose covers I straighten
smoothing edges till blue quilt fits brown blanket
and nothing hangs out

This envelope I address
so the name balances like a cloud
in the center of sky

This page I type and retype
This table I dust till the scarred wood shines
This bundle of clothes I wash and hang and wash again
like flags we share, a country so close
no one needs to name it

The days are nouns: touch them
The hands are churches that worship the world

~Naomi Shihab Nye

TREATMENT 7

I made it through another one - 3rd treatment of TAXOL....not easily - but I did it....
morning was a roller coaster of tears, fears and shaking - lots to do with the massive doses of steroids i have to take the night before to prevent allergic reactions...
the other thing is the cellular memory of past experiences..... i believe our bodies store memories deep in our cells and no matter what our mind might tell us about "relax, you can do this, calm down..." my body remembers on awaking that it's treatment day...
it also remembered allergic reactions i had when i had the 3rd treatment of Remicade which was an infusion drug for the PMR condition which i still have.
My veins collapsed after 2 tries in different places so it took a while to find a 3rd place which hurt more during the 4 hour drip than previous ones had.
I never do relax sitting there and envy others in the room that just drift off to sleep the whole time...
I did listen to lots of Irish music on my ipod but so much of it is melancholy that it made me wish to be in Ireland... and also took me back to my childhood memories of singing around my grandmother's piano with aunts, uncles and cousins singing Irish melodies...
i am sad that my children will not have that memory....

HOPE

it's hard to take picture with a broken shoulder when i can't hold the camera still...but today i managed this one in the back yard.....
tiny new shoots of hope that are beginning their journey to full bloom and gorgeous fragrance.....
their tiny heads peeking out give me hope....
tomorrow another treatment....let me live in the hope of healing......

spring morning

May spring enchant the new life,
shy and hesitant within me,
and set the rhythm for my sluggish feet
in a dance of holy yearning.
Author unknown

PROMISE

trying to see the promise of new life
hard when everything feels like hell
again today
these tiny leaves are new this week
on the Japanese maple
i will watch them each day as they
turn towards the sun
and await their full glory
as i await just even a glimmer
of a feel good day.....

NOT CLEAR

i realize i wasn't very clear with the STRUGGLE post....
the loud voice lost out....
i just collapsed into the feeling awful....
i am still collapsed and still feel awful
and the loud voice can just shut its ugly mouth.....

STRUGGLE

I hate war and everything it stands for so i went looking for synonyms for what i feel is going on inside and outside my body.....
"struggle" felt like the least violent.....
all day today has been a battle (another word i dislike immensely)
give in to the desperate feelings.... get up, move and follow the old adage "you can do it "
yes, i can....
and today was harder than a lot of days....the pain, the fatigue, the lonliness.....
feeling physically and emotionally beaten (another of those violent words)
yet having this really loud voice constantly challenging me.....
if you'd walk
if you'd get busy
if you'd listen to music
if you'd watch a movie
it you'd distract yourself
if you'd call someone
...you'd feel better.....
i didn't do any of the above
i don't feel better.....

COMPLETE with CARAWAY !

Real Irish soda bread complete with raisins and caraway seeds - just the way i would make it ....many people leave out the raisins and most leave out the caraway... so imagine my delight when my friend made it just right !!!!
Add to that a delicious corned beef and cabbage dinner with old friends and last nite was a treasure!
I was extra tired today from the outing but wouldn't have traded it for anything....
i sure am anxious for some stamina to return....
i did walk to the corner and back which felt like climbing the matterhorn....

PLANTING

blessings and thank you to my friends Kathyrn and Alex for the planting ritual yesterday. I had 2 baby lilac plants that someone gave me a while ago and they were drying out to be in the ground.... I now have some new life sprouting to watch and water each day as i pray for the new life of post treatment to be a reality.....

SURRENDER

I have this print hanging on the wall of my "office" and I need the daily reminder it represents. It's title is THE FLAME OF SURRENDER and those who know me well were surprised when i bought a few years ago because of all the red, yellow and orange - not colors i have around me. the print is much more red than it looks here.... I found it in a small boutique in Capitola and was moved to tears at its beauty.
the artist has since become a favorite - i buy her cards and bookmarks often and an occasional small print as a gift. I invite you to enjoy her work
Mara Berendt Friedman

TIRED

I am tired….
Worn out, exhausted,
weary, fatigued,
drained, wasted…
day after day
of tired…..
I am tired of being tired
Take a shower
lie down
Fry an egg
lie down
Get dressed
lie down
Straighten the bed
lie down
Walk around the back yard
lie down
Talk on the phone
lie down
Answer an email
lie down
Visit with a friend
lie down
I am so tired of
Not being able to walk any distance
Not being able to dance
Not being able to cook
Or clean or sort
the piles of paper everywhere
Tired of things not being put away
Tired of Christmas wrapping still on the table
Tired of the pain in my shoulders
1 broken
the other -tendonitis from overuse
tired of the weakness
tired of
the scaly itchy skin
tired of the sores that sting
tired of the back pain
leg pain
just plain tired of it all…..

WITCH'S BALL

this beautiful blown glass ball hangs outside on the patio... i bought it on a trip to Salem MA - home of the witches....the lore is extensive but it is thought to be a protection from "evil" spirits..
When i look at it, i remember the healing power of witches and it's magnificent colors and design bring beauty and joy to my long, lonely, boring days of fatigue....

Neuropathy

one of the side effects of taxol is neuropathy which is a numbness in fingers and toes and the last few days i have noticed the onset in my hands....i had hoped i would skip this one but it seems it is creeping in.....
hopefully it will not get serious and will eventually go away. "they" make no promises - for some it goes away..... others it does not.....
most of the day in bed except for a brief jaunt to get a hamburger with Marilyn. I felt "chickened" out so wanted a hamburger..... it was good but strength wise - didn't have much energy to finish it all......
i am still waiting desperately for a "turnaround" day when i will have a little strength to do something!!!!! it is so hard....this horrific fatigue...

www.gratefulness.org
WORD FOR THE DAY
Wednesday, Mar. 7

All sorrows can be borne if you tell a story about them.



Karen Blixen

HAPPY BIRTHDAY LIAM

i am so grateful for the 6 years of utter joy this beautiful little boy has brought to my life..... soon i hope to be riding the carousel with him!

MUD PIES

While Grampa Pete is buried in snow in MN, gramma, nana and Ben enjoyed the warm day and the mud.....
the leg pain is really bad, but the company and love helped me thru another day....

1 more day

Taxol pain in the pelvis, legs and back is horrendous.... slept a lot last nite and this morning....
what a difference friends and love makes....
-someone went to the grocery store for me and made me corn bread
-someone dropped off good soup and chocolate cake
-someone came and washed sheets, made my bed, oiled my scaly skin, put away the valentines and got out the shamrocks.... and mostly helped me feel safe and calm.....
all of which i so needed to get me thru 1 more day.....
blessed be the love and care which surrounds me....

TEARS AND TAXOL

2ns treatment today of Taxol - a long day of sitting in the chair from 11-3 as the bags dripped slowly.... tears came easily, relaxation almost impossible... i listened to my ipod,talked a little to the woman next to me and visited with my friends who faithfully accompany me...
too exhausted to even read the gossip magazines...
now the next few days the lower body bone pain sets in.... i'm hoping i can breathe thru it of course with the help of pain drugs...the broken shoulder pain is already quite bad....
the dr says my counts are very high - no signs of anemia - good news....
yesterday was the first time i said out loud to myself....I don't want to do this anymore... I'm done.... I am going to quit.....
but today with fear and some kind of mysterious strength and knowing you are all out there with your good thoughts,healing energy and prayers.... I DID IT
HOORAY FOR ME...!
and blessings for each and all of you who are with me on this difficult journey....

I DID IT`

HOORAY FOR ME ! I got through the whole performance of URINETOWN at Bellarmine H.S. last nite....
another test of holding BOTH-AND
fear and fun
anxiety and awe
fatigue and frivolity
weakness and wonder
sadness and silliness
lost and laughter
pain and pleasure
with Chris at my side i felt safe even tho not so sure i could make it....
but I did
I couldnt clap with my broken shoulder, but did hoot, holler and for these amazing young people who brought me joy and hope....