THE WAITING GAME

pain remains the same-
drugs the same-
laxatives are beginning to work
now it's just WAIT for the orthopedic surgeon appt which isn't till wed.....
he will determine what the healing will involve
WAITING sucks and i want the treatments - if there are some-to begin
i want to drive
i want to dance
i want to put christmas away
i want to sort out the surrounding mess
but all i can do is take drugs and WAIT
and it's awful

bits,pieces,breaks

i spent 6 days in the hospital with what they are calling a thorassic compressed fracture of the t6 vertebrae...the purpose of the hospital was pain management which didn't work very well..pain level is still excruciating
no one knows HOW it happened
we do the the WHY.- prednisone is the dirty nasty culprit....and as some of you know i have been on that forPMR for 3.5years.....
bone scans, mri's, ctscans, xrays etc show "massive mess" with tissue tears, trauma disintergration of bone marrow,osteoporosis,etc ALL AS A RESULT OF 3 YEARS ON PREDNISONE(STEROIDS).
any slight move or wrong move could have caused the fracture
right now the name of the game is pain control
i am on a fentanyal patch 24/7 - lidoderm patxhes every other day and oral Percoset every 4hours so am quite loopy
no driving
no lifting
no dancing(the worst)
i am under the care of a pain management specialist, internist and orthopedic surgeon.
much of it is a waiting game
and once again askingfor help and support -(not my strong suit)

WHAT DO I NEED RIGHT NOW

rides to appts when they come up
intermittent food (not a lot)
mostly an email or phone call to stay in touch - these are lonely, long days and some days no one writes or calls....

i did manage to go out to lunch yesterday -a soft booth provided enough stability to eat.
i'm sleeping way t0o0 much-i think it's the drugs
i will try to keep this update (up to date)
it's pretty painful to type ......
thank you for getting this far in reading the ongoing saga
it's hard to keep it short an simple
i will be gad to answer any questions and would love to hear from you
i am missing all of you...............

ode to joy

these have made me smile over and over today and YES - CRY!!!!!!! with immeasurable joy...
i bought these tap shoes for ben's birthday and he immediately took to them and announced 'LADIES AND GENTLEMEN WATCH MY NEW TAP DANCE " and off he went tapping away........
i am so happy i thought of these for a present....

who needs this?

somehow i have developed bursitis in my already compromised (lymphedema and PMR) shoulder and arm which in turn has pulled, strained, sprained the trapezoid muscle in my upper back
the pain is unbearable- and i am at a standstill as far as doing anything......christmas is still up everywhere and there is no way i can put it away presently.
even this typing will cost me in the pain dept.....
the pain medication (Norco) wasn't doing a thing so friday the dr put me on oxiconton!! a real strong narcotic and i ended up calling him to say it wasn't working...he doubled the dose and i still haven't gotten any relief....i must have a strange body as others have told me if they were taking what i'm taking -they'd be flat out. i don't even feel it.......
i've been mostly in bed with ice packs which numb things for a while......
i was scheduled to go on a retreat for the weekend but had to cancel - lost my deposit but there is no way i could have driven to san rafael and then concentrated on the retreat work.....
the dr sent me for an MRI on thurs and i called chris to come with me as i knew i couldn't do it alone. thankfully it was at the end of his work day.
he held my hand for the whole hour.....thank you, thank you, thank you and i did get through it..........
not sure what the outcome will be -i see the dr on thurs -not sure there is anything they can do...
i'm very discouraged and unable to do anything........
who needs this?????? where is end of pain........?

twelfth night

time for it all to be a memory
i love all the beauty of the decorations-yet the 12th night is technically the time to let them go.....
it may take me twelve times 2 or 3 days to get it all put away but i will take it slow......
good bye to all the angels, muppets, ms santa, lights, fairies, dancers, birds on the tree and the greenery everywhere.......

SOUL STORY

how does one describe the soul of a 4 yr old?- one who some theoreticians say cannot relate
how do words tell the real story of a moment ?
how can i share an unbelievable experience i will never forget
I am struggling to find words and there are none at all to tell this story, but i need to share it with the world.......
Ben was here for a sleep over and after a wonderful day and evening and next day, he was getting ready to go home with daddy. "Daddy," he said, "every time i come to nana's her arm is hurting..." just as a matter of fact statement of the reality. Daddy validated that and explained that the hurting was left over from when nana was really sick, lost all her hair and now has this arm issue left over.
Bags were packed and time came for the"adios, te amo" ritual as he got ready to climb into his car seat....sometimes he needs a prompt to kiss and hug nana good bye.....this time unprompted, he came running to me to kiss and hug me and
THEN........ this amazing child reached down and took my lymphedema, swollen arm in his tiny hands and picked it up and kissed it....
then on to the car seat.
i was in complete shock and actually am still reeling from the depth of that simple action straight from the heart of a tiny soul....
i can still feel the kiss-am still in awe that he somehow knew that the limb needed some kind of
attention that came from love.
poets and writers can find words to describe this moment in time-i am left awestruck and tearful at the beauty of this experience and will treasure it for eternity and beyond........

HAPPY NEW YEAR

Positive Resolutions

Instead of making a resolution to change something about yourself, consider reflecting on what you already do well in your life and then commit to deepening that practice. Spend more time with what you love most.

I took these quotes from another blog with hopes that she won't mind my passing them on.....

________________
For last year's words
belong to last year's language
And next year's words
await another voice.
And to make an end
is to make a beginning.

-T.S. Eliot, from "Little Gidding"

_______________

January First (excerpt)

The year's doors open
like those of language
toward the unknown. . .
Tomorrow, we shall have to invent,
once more,
the reality of this world.

-Octavio Paz

The Winter of Listening by David Whyte

Carla who who feels like a friend and from whom i buy a lot of candles-(check out the beautiful WINTER one) has one of my very favorite blogs.-she posted this and i remembered how much i liked it...and all of David Whyte's poems

No one but me by the fire,
my hands burning
red in the palms while
the night wind carries
everything away outside.

All this petty worry
while the great cloak
of the sky grows dark
and intense
round every living thing.

What is precious
inside us does not
care to be known
by the mind
in ways that diminish
its presence.

What we strive for
in perfection
is not what turns us
into the lit angel
we desire,

what disturbs
and then nourishes
has everything
we need.

What we hate
in ourselves
is what we cannot know
in ourselves but
what is true to the pattern
does not need
to be explained.

Inside everyone
is a great shout of joy
waiting to be born.

Even with the summer
so far off
I feel it grown in me
now and ready
to arrive in the world.

All those years
listening to those
who had
nothing to say.

All those years
forgetting
how everything
has its own voice
to make
itself heard.

All those years
forgetting
how easily
you can belong
to everything
simply by listening.

And the slow
difficulty
of remembering
how everything
is born from
an opposite
and miraculous
otherness.
Silence and winter
has led me to that
otherness.

So let this winter
of listening
be enough
for the new life
I must call my own.

David Whyte

with humble gratitude

2 news stories on pbs greeted my morning on the way to an 8 a.m. dental appt-both of which filled me with gratitude and a humble awareness of the blessedness surrounding me.....
50,000 people in New Hampshire will not have power thru christmas......no lights, no way to cook christmas dinner, no heat........ and i have a fit when 1 string of about 1000 lights goes out on my tree..........
82 homeless people who died on the streets of s.f. were remembered in a memorial yesterday-and i feel overwhelmed at the clutter filling my space and home-all this space and all mine........
it is so easy for me to get carried away at this time of year -
i overdue everything from decorating and shopping and then feel guilty... i work hard every day on my addictive personality but it doesn't always work........i did put out only about 1/2 of my ms anna claus and angel collection and the muppet ornaments are not all on the tree......
a very difficult thing for me to do....
my prayer is for all those who lack the blessings that i try to be grateful for each moment
i wish i could be more comfortable with the simple life..........
those in N.H and on the streets everywhere have no choice but to know what that means

contrasts

a play day with ben was sure a study in contrasts........
autumn leaves-cool crisp weather-
leave piles-

bare bottoms

-and bundling up for a trip to christmas in the park.....
and in between
constructing the manger

...
.and sending the polar express on its way......

.
i'll be in bed early tonite !

on the road again

another trip 45 minutes south to the lymphedema clinic for a fitting for a compression piece for my swollen breast. it is the same black padded heavy material sewn in criss cross fashion to move the fluids that are trapped in my breast on the surgery side.
the way they keep explaining it to me is that the the whole quadrant of my body has been affected by radiation and the lymphatic fluids are just plain stuck and backed up forever.
the 2x weekly of MLD (manual lymphatic drainage) with the physical therapist and wearing these damn garments are what tries to keep things at bay and maintain the swelling.
in order to wear the breast piece, i had to get mastectomy bras which has a "pocket" (usually for a prosthesis) in which to insert this compression piece. you can imagine how classy and great thislooks under clothes..... so many things i can't wear without looking like some kind of monster.... i choose to skip the garment for special occasions out.....
some people have fanny packs - i have a booby pack !
the bras are expensive and then the fitting fee on top of that set me back once again.....not covered by any insurance even tho this is definitely treatment.......
so way over $100 later - i 'm on the road again -hopefully to keep my upper quadrant working.....
the road is hard and long and sadly there is no end to this journey.........

pain,pain,pain

today is an extremely bad pain day - arm legs, feet, back, neck.....
as always not sure if it's the polymyalgia or what......
i've been off the medication that supposedly causes such bad pain for a month now.....
tamoxifan is not supposed to be pain producing -so not sure the cause
all i know is i hurt all over and am moving very slowly and wanting it all to go away.....
the lymphedema arm is the worst - not sure if that is the cause or if i've done something to hurt the arm and shoulder....
it is true that the broken shoulder never healed completely....
am noticing some neuropathy(numbness) in my feet so have to extra careful applying the brakes....
this is a common side effect of radiation....

and.........

and add to that the frustration and hardship of the lymphedema garments and my OBGYN not being covered by insurance and the stress increases.
My OBGYN opted out of all insurance programs because of the nightmare of it all so her visits are out of pocket - $250 for an annual and then i have follow ups scheduled which won't be as much but still budget scrunch....
THEN......
the lymphedema sleeves and gloves are outrageously expensive...the night time big black one which you have all seen was $500 - the newer daytime glove $159 and sleeve $89...
add to that an oversleeve which i need to order for the nigh one....... the compression isn't enough as the swelling has gone done a few millimeters....this will keep happening so the cost is ongoing.....
plus these garments from daily wear need to be replaced ever so often !!!!!!!
then there's the breast issue - ( i know ! too much info ) i need to wear a compression piece over the breast so one had to be made and then mastectomy bras which have pockets purchased so that the piece can slide in to wear all day.....all previous bras are sitting forever ina drawer unuseable probably for life..... what to do with them ????? some are still in good condition and expensive...!!!!!
The nurse in morgan hill who fits me for all this- always submits the bills to medicare to nudge them but they are always returned.....
so it's just one more stress to deal with.....
thankfully i am cancer free..........but it still is upsetting when people think that it is all over.......
medication by the fistful and these expenses make life less than joyous some days......

and i forgot to mention the 2 dentist appts. for adjustments to bridge and some kind of really sore mouth - probably drug induced.......

I WANT A DAY OFF

no one will much care about this post but felt like venting about it........
today the only stop was the pharmacy for more drugs for a bladder infection....
but each week when i look at my date book, i long for a day without a medical appt of some sort.....a day just for me to do whatever i want.....
here is how it has gone just this past 2 weeks and it's more or less always this way....

2 physical therapy appts for lymphedema drainage massage( this is a weekly regimen)
OBGYN annual physical, pap smear and an order for an ultrasound to be scheduled for followup on fibroids
rheumatologist appt for polymyalgia with order for a bone density to be scheduled
eye exam appt with opthamologist
community breast project counseling appt - weekly
trip to morgan hill for fitting for compression glove and sleeve
6 month check up -mammogram and ultrasound
appt with surgeon to discuss those results ( which were all OK!!)
appt with internist to check on heart murmur found by surgeon and OBGYN
2 trips to hospital lab for blood cultures
and so it goes.......
next week - pretty appt full also - ultrasounds for fibroid followup and one for annual checking for kidney stones AND scheduling a visit to cardiologist to check on the murmur...
most all of these appts mean managing drug dosage so i am a walking pharmacy and am also tired of that..........
THE GOOD NEWS
I have the very best of doctors who are careful, efficient and on top of everything as my body grows older and in need of more attention......

but i still want a day off!!!!!!!

HOORAY BARACK !

Three cousins - sweaty, popsicle-stained, and in various states of undress - watch history in the making -

picture compliments of chris and christa

BLESSED BE !

May we celebrate this miracle with hope and peace in our hearts.
May the spirits of the slaves who built the white house rejoice in this amazing grace....

Election day thoughts

From one of my favorite web sites - Abby of the Arts....

Wage peace with your breath.
Breathe in firemen and rubble,
breathe out whole buildings and flocks of red wing blackbirds.
Breathe in terrorists
and breathe out sleeping children and freshly mown fields.
Breathe in confusion and breathe out maple trees.
Breathe in the fallen and breathe out lifelong friendships intact.
Wage peace with your listening: hearing sirens, pray loud.
Remember your tools: flower seeds, clothes pins, clean rivers.
Make soup.
Play music, memorize the words for thank you in three languages.
Learn to knit, and make a hat.
Think of chaos as dancing raspberries,
imagine grief
as the outbreath of beauty or the gesture of fish.
Swim for the other side.
Wage peace.
Never has the world seemed so fresh and precious:
Have a cup of tea and rejoice.
Act as if armistice has already arrived.
Celebrate today.

-Judyth Hill

__________________
No matter who you are voting for today, there is much fear and anxiety in the air. I invite you on this election day to wage peace for a few hours. Instead of sitting anxiously awaiting the final results, let your breath transform the world around you.

This day matters tremendously for our sense of hope and unity as a collective body. I pray that whoever is elected, that those on the margins are seen and responded to, those who are suffering are cared for.

In the meantime, contribute your own act of compassion and peace. Meditate with the poem above, allowing its words to be knit into your bones. Go for a long walk spreading seeds of beauty on every corner. Hold a loved one and press your body close, listening for the heartbeat of love. Sing a song that makes you cry at its tenderness.

Remember that each of these acts matters, truly. Remember that you are the center of peace in the world, each and every one of you.

www.gratefulness.org
WORD FOR THE DAY
Monday, Nov. 3

One must have chaos in oneself
in order to give birth to a dancing star.

Friedrich Nietzsche

HALLOWEEN

A long day in north country....
first to liam's school parade - where his class did the limbo as part of the festivities

then on to ronan's parade - no costumes allowed but fantastic masks the kids had made.

I got to sit in on circle time which i just loved.......it was a showing of each child's large painting and how and why they created it....

back to the house for getting dressed as the star wars duo

and then a ride a little south to meet up with ben as gustafer yellowgold -someone everyone needs to know!

the rain didn't stop us and we trick and treated up and down the hill.....
being with little people as they get intothe spirit of pretend and celebrate this ancient ritual brings me so much joy and fills my heart and soul....
the ride and the rain didn't matter at all