NEW WEEK...

So the roller coaster ride continues.... a new week bringing new side effects.... very aggravating watery eyes and some kind of skin condition on my upper body that has produced sores that are both sore and itchy ...... and then just for another curve to round - a flare up of the PMR (Polymyalgia Rheumatica) which has hung out for the last year and a half....so the rheumatologist has upped the prednisone dose....YUK !!!!

to balance the ride....a trip to the grocery store at 5:00 brought this feast of color and shadow

BEYOND A BABY STEP

HOORAY FOR ME
today i went to an exercise class for women going thru chemo. Someone had told me about it and scared as i was that i couldn't do it....i did it....
last nite i set an intention that i would get up early and drive to el camino hospital in mt view to try this group..... i knew it would be hard so needed the deliberate intention.
the class was from 9:30 to 11:00 - led by a nurse practitioner who is much more of a mover and shaker than i have ever been or will be.... she's beyond energy...!! I felt very safe knowing she is a nurse....part of my safety net i know i need....
there are about 25 women at all stages of chemo or other treatment and the "workout" is all about doing whatever you can do......i did much better than i thought - moved more than i thought i could - i'm feeling it already so expect to be sore tomorrow.
I was proud of myself not trying to push too hard.... i did a little bit of each move and then rested....
the session ends with a lights out, lay down, relax and visualization time so that was good although very hard for me to stay with.... i hope to get better at it...
I also made a wonderful connection with a woman who knows the people who run a LIVE BETTER, LIVE LONGER program for cancer patients at my local Y. ...it's free - don't have to join the Y - and they help you with a program at your own strength and level......she is going to get me the info to call about it.....
i feel very positive about the getting up early, driving and moving.... and plan to return next week.... it will only be 2 days after a treatment so hopefully i will be able to make it...
I will definitely set the intention with care and hope....
my dream is to keep moving.....

If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all. And so today I still have a dream.
Martin Luther King, jr.

Morning Guests

GRAY

A grey day surrounds me
Sun hiding
The birds have shown up at the feeder
Like they do every morning
I can hear their hungry song
Somehow they know there’s a place for them
A safe place to be nourished
A place to come back to each day
They remind me of my hungry song
Buried deep
Wanting a safe place
away from this daily struggle
A soft place to fall
Into something other than exhaustion
A bit of sunshine in this grayness…
So one more gray day
I will tune into their melody
Wanting to hear a song of hope
That I know lives in my soul….

STORY PEOPLE

this artist is one of my favorites and has much to say about our lives in his comical or not so comical way....click on STORY PEOPLE for a link...

MUSIC of the NIGHT....

"MADAME SPEAKER......."

DOWN DAYS

yesterday and today have been really down....nausea and diarrhea on top of the horrific fatigue....
short walk sent me back to bed...this is so very hard.....
AND the kitchen sink backed up so have to call a plumber !@#$%^&*&*

Light in the Dark

Ben turned 3 and my sister drove me to Oakland for the celebration....my soul was filled getting to be with my 5 boys ......!!!!

LOST WEEKEND

This unrelenting fatigue
creeps over me
Like a blanket cold and wet
Icy chills wrap themselves
Around me
As I slip into the chasm that is
Dark
Damp
Dreary…
And I
Sink down into it
And feel the empty
Black hole…
The terrible tired
Almost unbearable
The sound is a silent scream
The smell Is ugly and foul
this lonliness awful
It is deep
And dark
And pulls at me
With its knarled fingers
Grabbing me and pulling me down
Into the pit
Alone
Afraid
Aware
Of my sadness
Sucked into
The awful place
unable to move
Heart aching
Soul ripped open
With wanting to get up
All the while
Crying for
strength
praying it will be here soon.....

HAIR DAY

This morning my hair stylist of 30 years called and said she had a free hour or so if i wanted to bring my wigs for some cutting, styling, etc...
I had bought one wig which you've seen in a previous post...one that looks most like my hair.....
... then at a workshop at the American Cancer society last week, they gave free ones to the participants so I got a longer one, another short one and a red one! for laughs... so here's the results.... of course I can't fix them the way she does...

THE HAT

yesterday in the walgreen's parking lot - I passed a man on the way to his car as i was getting out of mine.
the interaction went thusly:
HIM i really like your hat
ME thank you so much
HIM not enough women wear hats with flowers
ME i like it too

A LITTLE JOY FOR BOTH OF US......

TREATMENT 3

waking up with apprehension
mind knows it's OK
body shaking with anxiety
blood test first
count is "good" so treatment can go ahead
meet with the DR.
sweet gentle soul who tells me
"you're doing this...I'm proud of you...
and i really like the flower on your hat...."
then on to the BIG room with BIG chairs
women and men circled for healing treatment
hooked up
prisoner of the bags and dripping
i try to settle in - shaking and weepy
holding on to Marilyn
she's walked this path herself
the nurse passed the kleenex
as the tears wash over me
i tell her no.....
i need the tears to wash away
things buried and stuck
deep in my body, heart and soul....
IV hook ups begin
good veins, the nurse says
it's working well
anti nausea drip, saline,
andriomycin and cytoxin, more saline
nasty, ugly, drugs
and with each drip
i try to honor the healing they bring
in ridding my body of cancer cells
the drips seem to take forever
my ipod distracts me
and brings more tears
the music calling my
body and soul to dance
and for now
i cannot....

It is such a secret place, the land of tears. ~Antoine de Saint-Exupery, The Little Prince

DAY 13

"love winter when the plant says nothing..." thomas merton

Hard to do some days....easier today as the sky was so blue, the air warmer and my body a tiny bit stronger....I walked almost around the block.
I also treated me to a manicure and pedicure which made me a bit nervous but my poor feet really needed it. The Dr. said it was ok as long as I didn't let them cut the cuticles as it would open my skin to infection and with my immune system compromised it could cause trouble.
So this last day before treatment #3, I had a little more energy and now the treatment will probably slow me way down once again....
I can only hope that it won't....

WINTER

this rose bush at the end of the driveway is a reminder ......
i must wait
in the cold
wait in the emptiness
wait in the barren time
new life will come
cold will turn to warm
empty become full
and beauty and new life will bloom
so in this cold and empty time
i must remember spring

HOORAY FOR ME

Today I presided at a burial rite at the cemetery in Santa Clara and did it with grace and strength. It took all I had to get dressed and get there and back pain is an issue...so standing for any length of time is a stretch and I DID IT !!!!!
I breathed and called on inner strength and the 1/2 hour ceremony went off without a hitch.
There were about 30 people present and they all loved it.
The fact that I was able to use my creativity and passion lifted my spirits.
Hope I have more chances for such experiences during this healing time....
Another baby step.....

SOUL SINGING

Being deeply loved by someone gives you strength:
Loving someone deeply gives you courage. Lao Tzu - Chinese Philosopher

How true this is.... Waking this morning brought no new strength or upward swing but tonight my soul is singing and for a good while this afternoon I forgot how weak and worn out I feel as I was surrounded by people I love so much.
Chris, Christa, Judy and Pete (Christa's folks) and Ben came down from Oakland and brought lunch and love and joy and blessings to my aching body and spirit.
Of course a 2 yr old jumping on my bed singing "Zippity Do Dah" adds to the joy....
It was so wonderful to have them here ...I didn't have to do anything or be anybody but me...however I am is ok with them....
Their hugs and presence filled my soul with songs of gratitude.....and when they left I felt a bit stronger.....
I am truly blessed.....

NOT YET.....

well today wasn't the turnaround day.....didn't even walk....anxiety seems to grow with each day...
this just plain SUCKS.....

OUCH!

The day after a chemo treatment I return for a shot called Neulasta. It is given to chemo patients to keep the white blood cells from depleting as a result of chemo.
You have probably seen the ad on TV as it is on a lot.....
Unfortunately, one of the side effects is "moderate to severe back pain".
Well that part has been creeping up and is full blown today. The heating pad is getting a workout.
I did get to go to lunch today to celebrate a good friend's birthday. Halfway thru the lunch I had them box my meal as I ran out of energy to even eat. I also was too tired for dessert ! which amazed me and my friends.Now that's tired......

SIDEWALK SQUARE

can't believe that a sidewalk square has become a goal. Today i walked 10 more squares past the corner. What a different life !!!!
on the way I came across this beautiful mushroom - a reminder of life's gifts....

WEARY

The picture is the recent full moon peeking through the dark sky in the backyard....a reminder.....
As i face this new day, i am weary and discouraged. Each day I work on hope and positive thoughts to face this monster challenge.
Most days what i write is in that spirit.
I realized this morning that I tend to stay away from discouraging feelings and don't really go to the dark places of sadness and anger....I usually run from the dark and yet know that it is a real place on any journey of this sort....
so today i am trying to own the anger and sadness of once again being pretty much overcome with fatigue. This is day 7 since my treatment and I was hoping by now to be on the ride "up" with energy....
I will take a shower which will lead me back to resting, then I will walk a few minutes.
yesterday i walked to the corner and back which felt like miles....
my life has been high energy since birth.....(my parents used to tell me i napped with one eye open so that i wouldn't miss anything....)
my friends constantly say they are amazed at my energy level....
coming to such a screeching halt is one of the hardest things i have ever had to face.....

I will love the light for it shows me the way, yet I will endure the darkness for it shows me the stars.

Og Mandino

So the darkness shall be the light
And the stillness be the dancing
Can I see the light
In such darkness
Can I feel the dance
In such stillness
Can I paint a picture
With only grey
Can I hear the singing
If the birds are gone
Can I dream the future
With the now in such a mess
Ah yes !
The dreams and the song
And the dance and the pictures
And the light are waiting
And with hope will be born again
And with love
The light and the dance
and the dreams and the song
will come forth

GOODBYE TO THE TREE

a little sad to say good by to the very dry tree today...spent a couple of hours sitting on the couch watching a couple of friends dismantle it and carefully take off all the beauty and memories.
christmas still abounds everywhere else in the house so it will be a while yet till things are all back together....
it's only the 15th day of christmas so I'm really only 3 days late taking down the tree...!!!!
....so far the worst day for fatigue and over all flu like feeling.... spent most of the day in bed again
didn't make it thru a whole shower - felt too weak....
Waiting for the uphill ride from this treatment...the downhill one's been too long and hard......

WAITING FOR "UP"

they tell you day 4 is a turnaround day - body going back "up" to prepare for another treatment...
welll it just ain't so.... this time anyway....
I don't ever remember being in bed so much in my lifetime....since sat - i've been able to do just plain nothing!
I forced myself to take a shower and get dressed so i could make a short grocery store run.... it was very hard and it took everything i had to get to the corner store and back and then back to bed....
what's left of hair is falling everywhere.....what a mess!!!
I await tomorrow with HOPE

Downhill Day

haven't much left bed all day... energy is below zero. headache hanging on....
did take a shower and what's left of my hair is falling everywhere.... - big mess and upsetting....
guess this is the way it will be - up and down the roller coaster and never knowing which......
Just have to learn to hold on tight...
If anyone ever doubted the power of words..... i have news for them..... it's amazing what a few words can do when one is lonely, afraid and tired.... tender words that you folks leave here help me face the day....
thank you for not trying to cheer me up or tell me how things will be better...
you have all been so great about just letting what is for right now be what is......
blessings and love

WIG DEBUT

this afternoon I had an interview with a couple for a summer weddding...was nervous as i'm very tired and pretty weepy today....
first wearing of the wig...I hope I fooled them.....
I got through it....
have a headache from the chemo which i had after the 1st treatment so the wig is pretty uncomfortable now..... i suppose i'll get used to it....
i much prefer being around the house with no head covering...

BEGINNINGS....

First outing with a head covering- lunch with friends....felt strange but of course i got out the matching pin for the hat and matching top and earrings so felt like I was "put together"
when I went for my day after chemo shot, the nurses were very excited about "the look" !
and so ...one more baby step on the journey....

ENDINGS.....

Couldn't face the sound or feel of the razor so just had my friend's scisssors do what they could do....so it's the end of what I knew of my hair....they say when it comes back - it can be quite different....
a milestone day.... and I did it !!!

Courage doesn't always ROAR. Sometimes courage is the quiet voice at the end of the day saying "I will try again tomorrow".

AINT DOWN YET !!!

souldancer
Huge disappointment - hair stylist is sick so I couldn't take a chance on being near her with my immune system compromised....
so will have to wait till tomorrow nite when my friend who is a sylist said she would come to my house,,, in the end that might be best instead of going to the salon where my very loving sylist of 30+ years works at being a cheerleader and wants me to "be happy". The universe has ways of taking care of everything, I guess....
I did get my 2nd treatment - count was back up a lot... nurses were happy that it went well.
I was way more stressed than for the first one.... agitated and unable to relax even with my affirmation tapes and my music....
I think it was the anticipation of the hair loss and the fear of introducing yet another new drug. They tried something new for anti-nausea in the IV as the last time I got a week long horrific headache that I couldn't shake presumably from the anti nausea IV.
Tomorrow I go back for the Neulasta shot which works on building up blood cells AND causes bad leg and back pain which i'm not looking forward to.
I am very tired and kiind of achy all over and grateful that #2 is over and there are only 6 more !!!!!
Hoping to have lunch with my friends tomorrow....

SILVER STRANDS

The silver strands falling
tears falling
beginning or ending
not quite sure...
beginning of healing
ending of part of me.....
won't stop falling
strands and tears
blend together
at the end of this hard day
tomorrow the scissors
and loving hands
will end the falling silver strands
and the tears will remain
on their own...

What morning brings...

january morn
in horror of hair falling
a single rose blooms

SHARING SUPPORT

Upon finding out that my hair is falling out, at least a dozen people have said or written "It'll grow back...."
OF COURSE IT WILL...
And in the midst of this trauma it's the furthest thing from my mind.
Although I know "I am not my hair", the gutwrenching feeling of losing a part of me is pretty overwhelming....
I have always loved my hair and take pride in keeping it looking good and well cared for...
So in the moment..... this F!@#$%^&*() sucks and the far off notion that it will grow back isn't a great help....
So please join me in validating the suckiness of the present.....

I AM NOT MY HAIR ...! India Arie video

I guess I need to watch this every morning as more hair is coming out today...
Worth watching all the way through...she says the truth if I can believe it....
it's hard today as more and more hair falls......

HOLDING BOTH

souldancer
These last couple of days have been practice in holding BOTH pleasure AND PAIN
and the culprit has been PBS.... Not being much of a tv watcher, I have had 6 hours of wondrous joy and beauty pouring out in front of me....the only time ever I'd wished for a huge screen and surround sound....all the while still trying to overcome the effects of an infection and chemo.
Last nite it was Nashville - tonite Vienna
Garrison Keilor's New Year's Eve show and the Vienna Philharmonic's New Year's celebration tonite...
2 sides of the world bringing their magic to fill my soul..
Dobro and dance
Viennese and Vincent (Rhonda)
Wobegon and waltz
ballet and banjo
strings and silver boots
Mehta and mandolin
Hope and horror as the first strands of my hair began to fall tonite...
I ask for courage to walk with hope thru this new horror......

NEW YEAR - NEW CHALLENGE

So I've fallen prey to the Blogging phenomenon.... maybe this will serve me...maybe not, but thought it might be helpful in inviting me to focus once in a while...
No resolutions as to frequency of posting...and for sure won't be daily.....
I think it may be useful to keep family and friends up to date with my healing journey through the next months of chemotherapy and radiation for breast cancer. It will save some of my energy and diminish by one the long list of emails most people get.