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....