souldancer

!@#$%^&*( ARM BANDAGE

2009-05-28T19:59:00.000-07:00

fighting this monstrosity all day
crying and swearing
fingers barely out - goes up to shoulder

lymphedema lament

2009-05-07T20:06:00.000-07:00

my hand, arm and breast remain quite swollen and will be for my lifetime....i try to forget about it and pretend it's not so but there it is every day.....one of the hardest parts is not being able to wear jewelry...i have a so many rings and bracelets that i love to wear but it's not allowed with the lymphedema.
i started 2x weeky physical therapy with a new practioner at good samaritan hospital ...my breast surgeon wanted me to change the person i've been working with because they have pumps at the hospital which the other place doesn't have.

after the pump for 30 minutes, i have to have the arm wrapped to maintain the "good" the pump did. ...so my arm is wrapped with foam and bandages and i am to leave the bandages on as long as possible. ..... the heat is atrocious as it doesn't breathe and yesterday it caused such hot flashes that soaked me from head to toe.....i had to take it off after about 2 hours...today i left it on for 4 hours but the hand part got so dirty and wet that i had to take it off.....this is what i had on....

it's very heavy and hot!!!! that foam does not breathe at all......(not sure why this is underlining)
enough lamenting for tonite - i guess i'll watch michael fox's special tonite on being an optimist...i need some optimism and he seems to have so much even with the terrible disease he struggles with......

6 month good news

2009-04-16T19:16:00.000-07:00

yesterday was my ongoing 6 month check up for breast cancer and happily i am cancer free........!
the day is a really hard one as it's a lot of waiting for results from the mammogram,, ultrasound and bone scan...
thankfully the place i go has the dr right there so there is no going home and waiting for result....
the check up was 2 hours and my body is really sore today from all the pushing and pulling that has to be done for the tests.....
what they did find is cysts in the breast that had cancer......they are filled with fluid which is a result of the lymphedema.....
the lymphedema is in the upper quadrant where i had radiation and it is very debilitating and depressing.....my hand, arm and breast are very swollen and will be for my lifetime.....
i hate wearing these garments but i must.......and have the heavier bigger one for bedtime which i have posted before............... i also have an insert for one side of my bra which doesn't provide for the best of looks in a lot of my clothes.................but......I AM CANCER FREE !!!!

2009-04-02T12:52:00.000-07:00

HOORAY for BEN !!!

Today is World Autism Awareness Day. Become aware......... I celebrate Ben and all those who are on the spectrum......

On December 18, 2007, the United Nations General Assembly adopted resolution 62/139, tabled by the State of Qatar, which declares April 2 as World Autism Awareness Day (WAAD) in perpetuity. Her Highness Sheikha Mozah Bint Nasser Al-Missned, Consort of His Highness Sheikh Hamad Bin Khalifa Al-Thani, the Emir of the State of Qatar, supported the campaign for a World Autism Awareness Day through the current 62nd UN General Assembly Session, garnering consensus support from all United Nations Member States.

This UN resolution is one of only three official disease-specific United Nations Days and will bring the world's attention to autism, a pervasive disorder that affects tens of millions. The World Autism Awareness Day resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges.

World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe.

By bringing together autism organizations all around the world, we will give a voice to the millions of individuals worldwide who are undiagnosed, misunderstood and looking for help. Please join us in our effort to inspire compassion, inclusion and hope.
UN World Autism Awareness Day Resolution (.pdf format):
Arabic | Chinese | English | French | Russian | Spanish

2009-03-26T12:16:00.000-07:00

Add it to the pile of things that suck !!!
A very long appointment with the eye retina specialist and dozens of pictures with very high tech computerized cameras has found the culprit.....pictures of the retina found a jelly like thing which was supposed to have floated away ...it is attached lightly to the retina - SO they have to go get it !!!!
it's an outpatient surgery but does require anaesthesia and someone digging around in my retina ...here come the fear mongers once again
this is not mandatory - the "thing" can just sit there, but it is in my direct line of vision and very bothersome so i need to get it out....
it's my choice as to when to schedule it so i need to find 5 days with nowhere to go as i won't be able to drive .....
i am so tired of the universe bringing these things that hold me captive...and the old adage that "there is a lesson in everything" just doesn't work for me.....
Meanwhile I'm to start supplements of fishoil, eye vitamins and blueberries which they just discovered improved night vision !! i do love blueberries but they sure are expensive....wish i could grow them, but i hear they are difficult to get going in this part of the country....

2009-03-21T12:37:00.000-07:00

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

the eyes have it............

2009-03-14T11:25:00.000-07:00

for the last few months i have noticed a blurring of vision in one eye and difficulty reading.....since i onoly have my eyess examined 1x yearly and it had only been 5 months - i ignored it for a while.......now it is too aggravating to ignore, so........
another dr visit (I don't have enough) ! turned up somewhat of a mystery...my eyesight has gone from 20/20 to 20/ 80 in just a few months....dr not sure why - medications ??? macula isues , growth of a cataract....?
i do have a cataract which may need removal if that turns out to be the culprit
more tests coming to eliminate and/or explain changes.....
i am a little concerned as my dad had macular degeneration and it is hereditary, so hopefully it's a cataract or drug issue.
the difficulty focusing to read he believes is drug related as he says wearing the pain medication patch that i wear is like being on 2 martini's all the time....
actually it doesn't affect me that way and believe it or not my internist says that my high tolerance for drugs is genetically relate to the alchoholism gene which i carry.....
sooooooo - more tests, more waiting,

the empty house

2009-03-01T14:14:00.000-08:00

every morning as i pull up my kitchen blinds i am greeted with the empty house across the street.....
once the site of constant activity with gardening, visits from grandchildren, the dog jumping wildly
to each new sound....
now it stands - empty and silent and a cause for great sadness each morning as i remember days, months and years of activity and love we all shared....
now my memory is one of standing at her bedside as Inger slipped away from all of us knowing our world will never be the same.
I miss you Inger......

vortex

2009-02-26T19:57:00.000-08:00

every day i feel more and more like i am being swept into some kind of vortex where there is no escape....
doctor visits, phone calls, test results, conversations.....all to no avail so far.......
the latest is to cut back on the pain drugs and see what happens
-my internist thinks i need to just wait things out
-my rheumatologist says go ahead and have the procedure
-the surgeon's report to my internist recommends waiting it out....
one of the biggest issues is that there is so much damage and pain in ribs and surrounding vertebrae that the procedure will only begin to address the pain
also i am allergic to the antibiotic which they routinely insert in the glue
-surgery has its risks so why do it if i can "tough it out" for a month or more and see what happens.......
i am very confused about what to do..........so far i am in the throes of waiting which has its own psychological pain.
the drugs i am on are strong narcotics and drain my energy and cause me to want to sleep all the time
i am isolated, and depressed about the whole picture-sometimes days go by without the phone ringing or inbox having any messages but spam......
and the vortex has me dizzy and exhausted.............
to repeat
IT SUCKS !

hang in there

2009-02-21T10:40:00.000-08:00

basically the message was -hang in there-healing takes time-pain doesn't seem bad enough to "disable" you or keep you immobile-so if you can tough it out surgery may not be the best bet-xray showed -nothing is worse-can't tell if the vertebrae is healing by an x ray but he pounded on the site and i didn't jump or scream
it's very sore
and there are many things i can't do with this side of my body but he says it will eventually heal......how long?he won't give any kind of timetable - it could be weeks - or months - hopefully not years ......
i have so much cell damage and trauma and bruising in my ribs due to prednisone use that produces lots of pain so it would be almost hard to notice the absence of this one area of pain if i have the surgery
sooooooooo it's wait and see again- he wants to check things out in another month
meanwhile i'm wearing a pain patch which makes me pretty exhausted all the time so my muppet sleighs are still on the fireplace and the bathroom has Christmas angels spread about.......
i am so tired of not doing anything and am feeling very isolated and discouraged that life amounts to restingk, resting and more resting.....and i'm not a tv person and have massive allergy problems in my eyes so can't read.....
basically -it sucks !!!

2009-02-17T13:01:00.002-08:00

does it matter that I am...........

Publish Post

and the beat goes on

2009-02-16T19:20:00.000-08:00

the pain beat that is........
not much change - vertebrae pain is a bit less
foot is really bad
pain management doctor visit uneventful- she wants me to stay on the fentanyl patch and cut back on oral percoset -
she thinks the surgery isn't really necessary if the pain isn't really bad...
will see surgeon again on friday to take another look

HAPPY VALENTINE'S DAY

2009-02-13T20:53:00.000-08:00

valentine's day is a good reminder to me that i need to concentrate on self love - not something we were taught or that is encouraged.....
this poem which i've posted before as it's one of my favorites sums it up perfectly....

WILD GEESE

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting-
over and over announcing your place
in the family of things.

Mary Oliver

May you find all the ways to love yourself today and always............

does anyone want some more pain?

2009-02-11T20:54:00.000-08:00

i meet with the surgeon this fri a.m. to get some more questions answered and then can hopefully make a decision about the fractured vertebrae..... still am on a lot of pain meds but if i don' take them during the day , i can drive short distances to the dr etc........
here is some more news about what the aftermath of prednisone can be for some.......
on sat i awoke with horrific pain in my foot for which i had to wait till mon to see the dr
she did a lab panel thinking it was gout
lab did not diagnose gout...so on to xrays which found heel spurs and a flare up of polymyalgia (remember that ??? it hasn't gone anywhere...)and arthritis
the pain is just awful and i don't need this on top of the vertebrae and other pain......
ice,rest, more pain pills and trying to find relief in a shoe insert.....
i went looking today and found some shoes that have a lot of cushion and are recommended for my "condition" so i bought the on a 30 day money back guarantee
i haven't had a painfree day in months and months and it is taking its toll with fatigue and being really disheartened.......

more stress

2009-02-05T18:09:00.001-08:00

my pain meds have me very sleepy and groggy so don't have much energy to write.....
the visit to the orthopedic surgeon yesterday presented basically 2 options....
1
just wait and the fracture will eventually heal on its own -no knowledge of when.....weeks, ?months?
2
a procedure call Kyphoplasty which you can google or read this article.....
the procedure seems simple and non invasive, except that i am terrified of general anesthesia so am real hesitant.
my plan is to ask the surgeon some more questions before making any decision....
the stress of wondering what to do is very debilitating to add to all the other stresses.
i am being weaned off prednisone and can feel the pain of the Polymyalgia quite a bit.....
send energy and strength - i need it......!!!!
blessings to all as i face another mountain to climb with not a lot of energy to do so.......

2009-02-03T10:52:00.000-08:00

waiting.....
waiting.......
waiting.........

2009-02-03T02:40:00.000-08:00

While we cry ourselves to sleep, gratitude waits patiently to console and reassure us; there is a landscape larger than the one we can see.
Sarah Ban Breathnach

THE WAITING GAME

2009-01-24T15:00:00.000-08:00

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

2009-01-22T12:18:00.000-08:00

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

2009-01-19T19:49:00.000-08:00

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?

2009-01-10T15:00:00.001-08:00

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

2009-01-07T11:43:00.001-08:00

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

2009-01-04T19:13:00.000-08:00

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

2009-01-01T14:22:00.000-08:00

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

2008-12-29T15:32:00.001-08:00

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

2008-12-18T08:57:00.000-08:00

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

2008-12-04T19:37:00.000-08:00

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

2008-12-02T21:40:00.001-08:00

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

2008-11-20T13:54:00.001-08:00

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.........

2008-11-12T10:52:00.000-08:00

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......

2008-11-09T09:11:00.000-08:00

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

2008-11-07T21:11:00.000-08:00

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 !

2008-11-05T21:37:00.000-08:00

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

picture compliments of chris and christa

BLESSED BE !

2008-11-04T21:40:00.000-08:00

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

2008-11-04T16:33:00.000-08:00

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.

2008-11-03T10:04:00.000-08:00

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

2008-11-02T18:57:00.000-08:00

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

morning

2008-10-29T11:51:00.000-07:00

From my so favorite web site....wonderful gifts..... check it out

May this be a morning of innocent beginning,
When the gift within you slips clear
Of the sticky web of the personal
With its hurt and its hauntings,
And fixed fortress corners,

A morning when you become a pure vessel
For what wants to ascend from silence.

—John O'Donohue

remembering

2008-10-27T11:33:00.000-07:00

This is from another creative web site that i check often....

This weekend is the Celtic feast of Samhain and the Christian celebration of All Saint's Day and All Soul's Day which begins a whole month in honor of those who have died.

For the Celts this is the beginning of a new year and an especially thin time when the veil between heaven and earth is more transparent. As you begin a new year, you might consider calling to mind the memory of your ancestors and offering gratitude for all they have done to make it possible for you to exist. We tend to neglect our ancestral heritage in our culture, but in other cultures remembering the ancestors is an intuitive and essential way of beginning anything new. We don't recognize the tremendous wisdom we can draw upon from those who have traveled the journey before us and whose DNA we carry in every fiber of our bodies. As a way of honoring the past before we welcome in the future, consider engaging in practices that help you to connect with your own ancestors and the stories that form the roots of your own. Consider weaving these practices into your New Year's ritual as a way of recognizing that we never leave the past behind, but simply build on its foundations. A tree needs a strong root system to be able to reach its branches wide and tall.

Practice: Ancestor Stones
In the winter of 1955, the great psychologist Carl Jung chiseled the names of his paternal ancestors on three stone tablets and placed them in his courtyard. "When I was working on the stone tablets," he wrote, "I became aware of the fateful links between me and my ancestors." Consider going on a walk in the woods or on the beach at the end of the year and gather stones together. Bring them home and paint the names of your ancestors onto each stone and place them in your altar space or create a special altar for them. Make some time to hold each of them in your hands, make space within yourself to receive their gifts and wisdom, and reflect on the journeys of the people whose stories are so much a part of your own.

I have brought home many stones from the ocean and other places and intend to do this simple remembrance hopefully sometime next week while it is the season of remembering.....

2008-10-22T21:12:00.000-07:00

Spiritual Practice
of the Day

The cloud weeps, and then the garden sprouts.
The baby cries, and the mother's milk flows.
The Nurse of Creation has said, Let them cry a lot.

This rain-weeping and sun-burning twine together
to make us grow. Keep your intelligence white-hot
and your grief glistening, so your life will stay fresh.
Cry easily like a little child.
— Rumi - translation by Coleman Barks

To Practice This Thought: Express your emotions freely to keep your life fresh.

the lymphedema journey continues

2008-10-21T20:16:00.000-07:00

this post is probably goiong to be TMI (too much information)for some of you as i describe my visit with the RN who runs the lymphedema clinic in Morgan Hill (about 45 minutes away.)
I was there for 2 hours to get fitted for some kind of bra or garment that would provide compression to my very swollen and fluid filled breast. Her first suggestion
which was heavy black quilted fabric in this style, i turned down as something i know i would not wear.....
since this condition is a lifetime achievement with no cure, it doesn't make a whole lot of difference, i hope..........
we then proceeded to try over a dozen different styles of post mastectomy bras that have pockets in them into which i will insert a piece of heavy quilted garment similar (but a little smaller) to thisthat will provide compression.....this is a less satisfactory but for me more realistic solution.... so much for lots of my clothes that will just not look or fit right in this get up......i got 2 so that i don't have to wear the same one every day........
i then was fitted for the arm sleeve and glove
which i will wear during the day -all day and wear the heavy black one that i've been wearing daily only at nite....
it was a horrific couple of hours accompanied by quite a few meltdowns...
it's all pretty overwhelming......
add to the trauma the fact that insurance pays for none of these treatments so charging $400 later ( and that's without a custom glove which she recommended) the trauma intensifies.....
if i had had a mastectomy, it all would be covered!!!!! so much for our health care system......
i am worn out and feeling pretty low.....
tomorrow the sun will shine and i will breathe a little easier.... i hope sleep comes quickly tonite....

the hard part

2008-10-18T23:17:00.000-07:00

it's that time again = laying in bed and hurting a lot....every nite i want to get up and write about the pain - and i don't - tonite i did get up.....
tonite is a particularly hard one -not sure why
pain everywhere which i assume is the drugs and/or polymyalgia, but tonite the lymphedema is aching a lot...arm, hand, fingers.....i even looked it up again to see if i was crazy and read an article on the "truncal" lymphedema pain which i have in my right breast and chest and shoulder....it's very real and often worse than the pain in the arm....so i just lay there and hurt - i pack on ice as the physical therapist suggests that versus heat...i need to do some more reading on that.....
the internet is loaded with lymphedema pages -but they are overwhelming to read so i haven't done a lot of research - i just kind of ignore it as much as i can which is nearly impossible because of the compression sleeve and the pain
i am so very tired of pain and the pain medication that doesn't really work.............
tonite i can't stop crying................................
the beautiful autumn day and the flower arrangements i worked on are a fond memory

my hero gloria steinem

2008-10-16T22:55:00.000-07:00

yes - hero she is
and is one of the women being honored by Maria Shriver so she appeared on oprah today........
one of the things she said in the conversation will stick with me forever......Many things she has said over the years have become part of my life.....and today i really loved what she said that fits what i have felt so often.......it comforted me to have my sadness validated and know that what i often feel is not depression...

I have come to know...
Depression is when nothing matters Sadness is when everything matters

joy, joy, joy

2008-10-14T20:16:00.000-07:00

the three munchkins came for a sleepover on sat nite so we could make our halloween cookies - a holiday tradition.....christopher joined us to provide an extra pair of hands.....as always the boys were more than angels - we created our "rules" for the visit and posted them, ran around in the dark with glo sticks - a $1.00 well spent for nighttime fun, wished on the almost full moon, watched charlie brown great pumpkin dvd for a bedtime story and then all cuddled down really late and really tired..........everyone went right to sleep........
sunday morning was cookie making time with of course lots of sugar sprinkles.....auntie christine joined us for the great dough roll out...... i think more dough got eaten than made into cookies.....
then off to the playground and back for a picnic lunch in the backyard.....
i am still revelling in the joy that 3 little boys can bring.........my heart is filled to overflowing and i am lonely and sad that they are all gone home.....the previous post fits the situation well.......

my camera is taking some really blurry pictures, but you get the idea

TEARS

2008-10-13T19:23:00.000-07:00

I absolutely love this quote found today on a web site i try to check out often....

When tears come, I breathe deeply and rest. I know I am swimming in a hallowed stream where many have gone before. I am not alone, crazy, or having a nervous breakdown . . . My heart is at work. My soul is awake.

— Mary Margaret Funk in Thoughts Matter

To Practice This Thought: The next time you cry, explore what your heart and soul are telling you through your tears.

Breathing easier

2008-10-11T09:45:00.000-07:00

HOORAY for "normal" mammogram and ultrasound for the 6 month checkup.....

i can now breathe a little easier for the next 6 !!!!!!

Retreat to the Ocean

2008-10-07T20:46:00.000-07:00

no appointments today..... first free day in a long time.... nervous about thursday's mammogram and ultrasound so decided to run away to the ocean where i always find healing and peace.
I walked a lot - sand walking is murder on the back and legs....extra pain tonite....
took my little camera and just took lots of pictures of the beauty....wish i had a better camera but am pleasantly surprised at what i did capture without a viewfinder in bright sun.....
there was even a sleeping seal and i had the beaches all to myself....
you can see them at Snapfish- it's free to join and look....
This beautiful face of the goddess was laying wait for me.....of course she came home with me....

Life in the Pain Lane

2008-10-06T10:36:00.001-07:00

pain, pain, pain, and more pain....it's everywhere....even in my toes...
is it the PMR, the anti-cancer drugs or left over cancer treatment that is the cause ? some people have taold me their bodies have never been the same since chemo and radiation treatments....
doctors don't know..... they test, they prescribe, they commiserate and send me off with more pain....
i'm taking narcotics !!!!!! 4 times a day and now the rheumatologist has increased the steroid dosage once again on a trial basis.....he told me that the latest research on PMR states that patients must just get used to living on steroids as there seems to be no other treatment that works....so he upped the dose of the prednisone - a terrible, awful drug to be living on....
the worst is laying in bed at night - the pain pills only take the edge off.... mornings are hard to get moving with the accompanying stiffness (PMR related)
chronic pain is exhausting so i feel tired all the time......
my 6 month check up mammogram and ultrasound is this thurs - let 's all think CLEAR,CLEAR, CLEAR.....i'm more scared and nervous than i thought.....
MEANWHILE....i keep dancing......
it is a true life-saver

A Call to Arms by Anne Lamott

2008-10-05T10:09:00.000-07:00

One of my favorite authors has this to say -read anything she has ever written - you won't be sorry

How to handle the fury brought on by this election? Register voters, hit the streets, pray. Stop talking about her. Talk about Obama. By Anne Lamott | September 16, 2008

I had to leave church Sunday morning when it turned out that the sermon was not about bearing up under desperate circumstances, when you feel like you're going crazy because something is being perpetrated upon you and your country that is so obscene that it simply cannot be happening.

I sat outside a 7-Eleven and had a sacramental Dove chocolate bar. Jeez: Here we are again. A man and a woman whose values we loathe and despise -- lying, rageful and incompetent, so dangerous to children and old people, to innocent people in every part of the world -- are being worshiped, exalted by the media, in a position to take a swing at all that is loveliest about this earth and what's left of our precious freedoms.

When I got home from church, I drank a bunch of water to metabolize the Dove bar and called my Jesuit friend, who I know hates these people, too. I asked, "Don't you think God finds these smug egomaniacs morally repellent? Recoils from their smugness as from hot flame?"

And he said, "Absolutely. They are everything He or She hates in a Christian."

I have been in a better mood ever since, and have decided not to even say this woman's name anymore, because she fills me with such existential doubt, such a sense of impending doom and disbelief, that only the Germans could possibly have words for it. Nor am I going to say the word lipstick again until after the election, as it would only be used against me. Or polar bear, because that one image makes me sadder than even horrible old I can stand.

I hate to criticize. And I love to kill wolves as much as the next person does. But this woman takes such pride in her ignorance, doesn't have a doubt in the world about her messianic calling, that it makes anyone of decency feel nauseated -- spiritually, emotionally and physically ill.

I say that with love. As we say in Texas. (Also, we say, 'Bless her heart.')

We felt this grief and nausea during the run-up to the war in Iraq. We felt it after the 2004 election. And now we feel it again.

But since there are still six weeks until the election, and since the stakes are as high as the sky, which should definitely not be forced to endure four more years of the same, we have got to get a grip. There are millions of people to register to vote, millions of dollars to be raised. We really cannot go around feeling flat and defeated, with the need to metabolize the rotten meat that this one particular candidate and the media have forced upon us.

One of the tiny metabolic suggestions I have to offer -- if, like me, you choose not to have her name on your lips, like an oozy cold sore (I say that with love) -- is to check out a Web site called the Sarah Palin Baby Name Generator. There you can find out what she and her husband would have named you if you had been their baby. My name, Anne, for instance, would be Krinkle Bearcat. John, her running mate, would be named Stick Freedom. George would be Crunk Petrol. And so on.

First of all, go find out what your own name would be. Then for one day refuse to use the name of these people who are so damaging to earth and to our very souls -- so, "I don't have to understand anything, it's all fuzzy math. Trust me. I'm the decider." From now on, when working for Obama, talk about Obama, talk about his policies, the issues, the economy, the war in Iraq, poverty, the last eight years, Joe Biden. You don't have to mention Crunk Petrol, or his sidekick, Shaver Razorback.

And you sure as hell don't have to mention Claw Washout -- she is absolutely, hands-down the most ludicrous person ever to be nominated. She's a South Park character. There was a mix-up. Mistakes were made.

Everything you need to know about how to bear up during these two months is already inside you. Go within: Work on your own emotional acre. Stand still, and hurt, and feel crazy. Then drink a lot of water, pray, meditate, rest. Rest is a spiritual act. Now, I am a reform Christian, so it is permissible for me to secretly believe that God hates this woman, too. I heard God slam down a couple of shooters while she was talking the other night.

Figure out one thing you can do every single day to be a part of the solution, concentrating on swing states. Money, walking precincts, registering voters, whatever. This is the only way miracles ever happen -- left foot, right foot, left foot, breathe. Right foot, left foot, right foot, breathe. The great novelist E.L. Doctorow once said that writing a novel is like driving at night with the headlights on: You can only see a little ways in front of you, but you can make the whole journey th is way. It is the truest of all things; the only way to write a book, raise a child, save the world.

As my anonymous pal Krinkle Bearcat once wrote: Laughter is carbonated holiness. It is chemo. So do whatever it takes to keep your sense of humor. Rent Christopher Guest movies, read books by Roz Chast and Maira Kalman. Picture Stick Freedom in his Batman underpants, having one of his episodes of rage alone in one of his seven bedrooms. Or having one of his bathroomy little conversations with Froth Moonshine. (Bless their hearts.) Try to remember that even Karl Rove has accused him of being a lying suck.

Reread everything Molly Ivins and Jim Hightower ever wrote. Write down that great line of Molly's, that "freedom fighters don't always win, but they're always right." Tape it next to your phone.

Call the loneliest person you know. Go flirt with the oldest person at the bookstore.

Fill up a box with really cool clothes that you haven't worn in a year, and take it to a thrift shop. Take gray water outside and water whatever is growing on your deck. This is not a bad metaphor to live by. I think it is why we are here. Drink more fluids. And take very gentle care of yourself and the people you most love: We need you now more than ever.

compliments of Zena Moon
p.s. - I have one of her OBAMA candles burning

autumn amazement

2008-09-30T19:05:00.001-07:00

how blessed i am to have this kind of beauty every day.......the season of autumn has brought ms scarecrow and her family to dwell amidst the still blooming roses.... the ones right behind her are new today...
i am saddened that so many people have to worry where they will live as i pick this exquisite single rose to place at my bedside....

how sad it is that the country is in such turmoil with a very few rich white men directing the massive mess we are in..... and isn't it a coincidence that it all unfolds as the election draws closer........
don't tell me this wasn't all part of the plan to undo obama and let it seem like john boy is "saving the country"
let us send our good thoughts and energy to joe biden this week so that he can find the way to not be called a sexist for raising the important questions with princess sarah....
sadly he probably will be called that anyway.......that's the way it still is in this unequal universe we live in........

WEEKEND JOY

2008-09-29T12:22:00.000-07:00

how's this for a weekend of pure JOY !!!!!!
having ben for a sleepover and lots of adventures.....just look at that beautiful face !!!!!!!!
and THEN.......
a neil diamond concert sunday nite.... and believe it or not - he can still do it ! was expecting maybe some voice or range loss but wasn't at all disappointed....all the old favorites and some from his newest album- he was on stage 2 hours straight with no intermission..... 5 encores!!!!!!!

I AM BLESSED..........

brain freeze

2008-09-22T12:50:00.000-07:00

i wrote about the autumn equinox a week early - no one commented that i was off so that either means no one is reading this or no one knows what the equinox is anyway.....
today is the day !! the day when dark and light are balanced - when things are in balance in nature - i do hope the day brings me that balance -not one of my strong suits.....
-yesterday all my precious boys were here so i felt more than wonderful - the joy they bring is unmeasurable

-today the dog next door won't shut up so that isn't exactly balancing my body and spirit
-the beautiful bittersweet on my dining room table brings me memories of new england autumn which i dearly miss...... i sent for these branches from vermont - they come covered with leaves which you pick off and the heat of the house has all the yellow coverings fall off and the beautiful orange berries appear.....it amazed me what tremendous joy can be found in tiny orange berries!

May balance and a harvest of dreams fill your soul this gorgeous equinox day.....

BALANCE

2008-09-15T20:55:00.000-07:00

today we celebrate the autumn equinox - the day when dark and light are equal -balance...........when we acknowledge the harvest of our gifts...
.....this harvest festival traditionally applies to the harvest of foods, yet in this day and age, the 'harvest' may also apply to the 'seeds of dreams and wishes' that were planted many months earlier. Now is the time to see if they have come true. Whether they have come true or not ... a ritual to thank the growing energies of the divine could be performed at this time. Lay upon your altar a sampling of your 'harvest'.... use it freely in a simple ritual........ even if your 'harvest' came up empty, IE: your dreams were not fulfilled, the God and Goddess should still be thanked for the effort put forth in your name.......
my dream of less pain and more energy have not at all been fulfilled - in fact the pain is pretty bad most days and nites.....yet i face the coming change of season with the hope that change can happen in my body......
i lay in bed every nite with the pain from head to toe..... especially in my legs, arms and back
thinking i'll get up and write about it.... but i don't have the energy.....
i lay there crying......what can i do with this pain....? how can i get it to be less? what can i do to keep moving the next day?
mornings , getting out of bed are awful - it takes a few hours to be able to move about.....
the medication that i take every 4 hours is a narcotic which i hate taking AND it doesn't seem to do much but take the edge off....certainly doesn't take the pain away......
there is still no certainty as to what is causing the pain - POLYMYALGIA, the medication Aromosin, arthritis, lymphedema or....???????
the beautiful full moon is watching me as i write.....she is a beautiful sign of light and hope....
I want to believe in that light and that hope......but constant pain is such a strong pull in the direction of dark.........
i haven't written much here lately as i know from the lack of response at anything but happy posts are not what people want to hear.....
pictures and posts of roses and 3 precious little boys are what people want to see and hear.......
i so wish that was the real story of life all the time, but sorry to say the pain way overwhelms everything else most days and nights......
may the light of the moon and balance of the equinox bring me strength and more hope......

Sooooooooooooooo true

2008-09-09T10:01:00.000-07:00

All beauty of this world is wet with the dew of tears.

www.gratefulness.org
WORD FOR THE DAY
Tuesday, Sep. 9

Ingenuity

2008-09-01T11:10:00.000-07:00

who says there is nothing to wonder at in the world.....besides the roses, sun, moon, stars and the coming of day and night....there is the imagination of a 7 year old.....
Liam decided that if he tipped over the hand cart, put the big wheel on top he would have a means of transportation for his cousin who enjoyed his afternoon story time on the sidewalk being driven up and down....
those big shots and their limos have nothing on this ride !!!!!!
these will remain two of my all time favorite photos.....by the way - i bought that big wheel for Liam's 2nd easter and it has become his favorite toy at nana's after 5 years !!!!! of course it's too small for him- but he doesn't care.... he likes to practice his skidding skills and now of course has a new use for it !!!!

so true.....

2008-08-29T09:22:00.000-07:00

I awakened this morning to find this gift in my front garden circle
then opened my Word for the Day and found this waiting.....

www.gratefulness.org

WORD FOR THE DAY
Friday, Aug. 29
Don't be content with looking at a rose as beautiful flower. Look at her with Love, so that she enters into your heart and awakens other forces in your heart and soul.

NIGHTLIGHT

2008-08-17T03:11:00.000-07:00

ever since my breast cancer surgery, i have been on lots of different medications - some for the whole time, some intermittently, some for a period of time, some forever...
not sure which ones, but one or more has been causing quite disturbing dreams which wake me up almost nightly
i have never been one to remember dreams , yet these scary ones seem to hang on for a few hours or even days.....
last nite i had a particularly scary one where i was trapped in my bed between 2 men who were threatening me harm and i couldn't reach the phone to dial 911.... i struggled for a while and when i did reach the phone - it wouldn't dial.... i was terrified and the fear woke me up....
i had left my shade up because of the heat and as i awakened i saw this most incredible NIGHTLIGHT provided by the full moon -
SO awesome i had to get up and find my camera.....
stark naked i ventured into the backyard and of course not able to capture the full moon - i caught this glorious vision of light in the night sky....
it was exciting and beautiful and lulled me back to a peaceful sleep......
i wish for everyone in your darkness such a display of light.....
and hope that i will have many more escapes from ugly dreams like this incredible sight.....

catching up

2008-07-31T14:41:00.000-07:00

i am back at the keyboard tired, grouchy and overwhelmed at many levels after a 10 day trip to MA to visit my family.....
it was a great time being with them and i miss them a lot....however the humidity and heat wave did me in .... the medication i'm on causes horrific hot flashes through out the day and they were multiplied back east....
i truly need a vacation to recover - i spent far too much time driving..... didn't take the time to just hang out at the beach or anywhere for that matter.....
visiting family members, high school and college friends took up most of the time.....
i had a few trials of being lost and my phone out of service but managed to find my way "back home"
i almost succumbed to the notion of a GPS based on the lost experiences..... they do have a place , i guess......
flying did cause more swelling of the lymphedema but mostly it maintained itself - thankfully.....
i do now have some ugly blisters as the fluids are quite backed up.... the hope is to keep them as blisters - not break them which can lead to ugly infections.....
the plane trip back to s.j. was its own nightmare which i will write about next time.... my fatigue level is still pretty high right now and all i want to do is sleep......
traveling while doing lots of drugs and not being strong and able as i once was is quite an undertaking....
but i am here, safe and blessed to have a home to come back to......
more soon.....

2008-07-12T11:37:00.000-07:00

www.gratefulness.org
WORD FOR THE DAY
Saturday, Jul. 12

There are moments when I feel like giving up or giving in, but I soon rally again and do my duty as I see it: to keep the spark of life inside me ablaze.

Etty Hillesum

An Interrupted Life

ROUGH DAYS

2008-07-09T14:55:00.000-07:00

i sit here - 2 fans going and still dripping hair and clothes....
i have been away from the computer for a few days as the heat is so unbearable that it actually hurts to just sit here and try to type...
the sleeve garment is out of the question for these past few eays. as it gets soaking wet very quickly
i'm sure the swelling is worse
the physical therapsit says it isn't but it feels that way in the heat....
the drugs i take to prevent cancer recurrence cause awful hot flashes
the prednizone for PMR (remember that ??!) causes hot flashes and the weather only adds to them...
much of everything else is the same except for an increase in pain medication to try and keep the pain at bay....it still is there but the edge is a little less....
a new dog hwleing next door after having a very quiet neighbor for 20 years has my nerves even more on edge than ususal......
on top of that the refrigerator and freezer quit in the midst of the heat yesterday - repairs to the defrost mechanism fixed it but cleaning out spoiled food and now today faced with lots of sticky towels, sticky shelves and a really sticky floor is adding to my frustration level....
the doctor is playing with a day on - a day off with the prednisone and i can feel my body going nuts with the change....
so to put it all together
whine, whine, whine......
all is can say is i have a right to whining....
i want my life back....and today it isn't in sight....

2008-07-01T19:57:00.000-07:00

The Summer Day
by Mary Oliver

Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean—
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down—
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?

a scary pain

2008-06-24T20:58:00.000-07:00

my "new' sleeve which is tighter and has a compression pad on the palm of my hand has a strong piece of thread - carpet type - on the seam between my thumb and forefinger....
it has been rubbing, chafing and hurting on that space....
i did not know there was a nerve right there and fri and sat i had horrendous pain shooting up my arm and it scared me....
i finally remembered my friend who also wears a garment - different than mine - but she had to get it adjusted as the nerve pain was caused by the area between thumb and finger was too tight....
i took off the new garment - put the old one back on and told my physical therapist about it yesterday.....
she took the new one to fix the seam so it won't cut or hurt...
i'm already worried as there is the beginning of a blister there and there is supposed to be no cuts, scratches, etc on this hand or arm......
I keep reading more lymphedema pages to learn more and more but they are pretty depressing with all the warnings and "rules" i did find a really good site for lots of answers about the condition.....
mostly everywhere says the occurence is low percentage and i had to fall in that low % range, that it is an ugly diagnosis... and there are lots of do's and dont's
if you want to know more here is a really informative place to go....and here is another really good site
i try my best to stay positive but the heat and this garment does me in physically and emotionally and people asking all the time about the garment brings up the discussion and reality of breast cancer......even tho i am cancer-free - it is very difficult to talk about....

Quote for today

2008-06-21T12:36:00.000-07:00

Milk-toast-ness is a sin. Neutrality in the heat of injustice is a sin. Passionlessness is a sin, a misuse of our love-energy.

Matthew Fox in Sins of the Spirit, Blessings of the Flesh

2008-06-20T21:03:00.000-07:00

Happy Summer Solstice!

This picture is from one of my favorite websites
called HERONDANCE...................
they send out a beautiful free newsletter with art, poetry and reflections on our relationship with nature.
........they have prints, cards and books which make beautiful gifts. I know you will enjoy a visit to their site......
I sure would like a cooler solstice to celebrate as the thick, heavy compression sleeve is a nightmare to be wearing.... it is soaking wet with sweat inside and out.....i've had to take it off a few times today to let it dry out.....
and of course the heat doesn't help the swelling.....

Summer is the time when one sheds one’s tensions with one’s clothes,
and the right kind of day is jeweled balm for the battered spirit.
A few of those days and you can become drunk with the belief that all’s right with the world.
~Ada Louise Huxtable

meltdown

2008-06-13T14:49:00.000-07:00

wed and today i had meltdowns at the physical therapy session.....
wed. -my therapist decided i ought to be wearing a stockinette sleeve underneath the huge garment to help absorb perspiration so my skin won't "breakdown" which is one of the dangers of lymphedema - just what i need is another layer in this heat....
today - the sleeve maker came by with a new design - tighter and higher up to my shoulder to provide more compression....i really had to struggle to get it on and was cursing and crying at him and the garment.... he means well but tries to cheer me up and keeps saying"come on, let's see that lovely smile....." even being a pacifist - i want to smash him with the garment
the heat makes all of this even more unbearable....
i am real crabby today.........good thing there is no one here to crab at.....
heaven hlep the comcast technician due here momentarily to see what is wrong.......
i am just about sure my TV has died ..... it's very old and its time is probably up.....
i'm in no mood to hear that the tv is gone.....

Heartsick again

2008-06-09T22:10:00.000-07:00

June 30, 1981 NOW sponsors ERA Countdown Rallies in over 180 cities to draw attention to the ERA deadline of June 30, 1982, and to dramatize the wide support for the ERA.
Tim, Chris and I were in Boston and attended a rally there.........(I still have the t-shirt which now wouldn't even fit my right ankle....!!!!! )
then.................a year later........it was defeated.....as it has been over and over.....
I remember well that day when i heard the news and i cried.... my heart was sick.....
that same horrible feeling has been clinging these last few days as the news of Hillary's campaign suspension becomes real........

“ Section 1. Equality of rights under the law shall not be denied or abridged by the United States or by any State on account of sex.
Section 2. The Congress shall have the power to enforce, by appropriate legislation, the provisions of this article.
Section 3. This amendment shall take effect two years after the date of ratification."

heart and body ache

2008-06-07T13:45:00.000-07:00

My body continues to be in pain all of the time - nights are the worst....
add to that the pain in my heart for Hillary and for the dream shattered of seeing someome who looked like me in the oval office....
I am very sad today as she said goodbye to her campaign and only wish the following can ease my pain.....
"Although we weren't able to shatter this highest, hardest glass ceiling this time, thanks to you, it's got about 18 million cracks in it, and the light is shining through like never before," she said.
I believe that this picture shows some sadness that she of course cannot afford to show now or ever.....
today is a day for tears........

Family Volleyball

2008-06-01T15:33:00.001-07:00

Liam is getting real good at writing and likes to practice with notes....so sunday while the "grownups" were eating he composed this invitation for us....

(if you can't read the yellow it says volleyball game)

ben and ronan were wrapped up in a dvd of the backyardigans so note the invitation involves "one kid"...
turns out the volleyball game became much more interesting than tv to the little ones so after a few minutes of just the "1 kid" it turned into a full blown family adventure.....
i even played a few minutes with 1 arm and hit a few really good shots....

More on Lymphedema

2008-05-28T11:27:00.000-07:00

today during treatment with my physical therapist who does MLD* on my arm and breast, she worked a little on my upper arm which is somewhat fibrotic and is really painful.... sometimes the pain is my upper arm is excrutiating and she told me today that fibrotic pain on a scale of 1 to 10 is a 12 !!! so at least i know i'm not crazy !!!!!
one more day...............the mountain to climb is still here.....

*( Manual Lymphatic Drainage - a unique, therapeutic method of stimulating the movement of fluids in the tissues. The gentle, rhythmic, pumping, massage movements follow the direction of lymph flow and produce rapid results. It assists the cutaneous lymphatics in picking up and removing not just fluids, but all the waste products, protein particles and debris from our system. It also is successful in breaking fibrosis and fibrotic areas of a lymphodemous limb.)

DANCE

2008-05-24T20:47:00.000-07:00

one of my favorite tv shows - SO YOU THINK YOU CAN DANCE began again this past thursday nite...it's only audition time, but i love it anyway
in the weeks to come you will see so many kinds of dance and be in awe of what the human body can do. hope you will watch it..... FOX (not FOX NEWS) network thursday nites...
my favorite judge is mia michaels - an extraordinary choreographer and she's not size 2 !!!!!!!
.... i found these words she used in a magazine article and i thought them worth sharing.......

Why do we dance? Why does our body want to move and pulse with every rise and fall of the music that invades our ears? Are we a product of a the thousand and one classes and a lifetime of training, or is dance a purely instinctual and primal experience that happens internally only when we allow it? I would only hope that both reasons intertwined with respect and nurturing are the answer. Or is it a gift that's given by a much higher power than ourselves? That would be beautiful.

Allowing movement to come through us in the form of pure energy and onto a highly trained yet raw instrument is what defines the ultimate dancer. One that knows how to pull from technique and also when to leave technique alone and head straight to the heart of the matter. One that knows how to pull from the rawness and humanness that would drip from their own personal journey through this world and allows the real movement to come from the inside out.That is beautiful.
It is so easy to hide behind steps It's much deeper than that. Our goal should not just be to perfect what a choreographer gives us but also to allow our own unique voice as a dancer artist to come through and marry to the energy of the choreographer. That is beautiful.

Then again, let's think about some of the most simple and beautiful images of dance. A young child is jumping freely to music, laughing and giggling with such purity and with no fear of judgment. An older couple, fragile yet safe in each others arms, slowly try to keep up with their favorite song from a time earlier in their lives as they reminisce through all the years with each step. That is beautiful.

If everyone danced from their heart and purity of spirit, using free movement as a daily practice and meditation, there would be no more wars. I believe every breathing thing has been given the gift of dance and movement. So let go, take that deep breath and dance! That is beautiful!

Mia Michaels

WORD FOR THE DAY

2008-05-24T10:10:00.000-07:00

Not knowing when the dawn will come, I open every door.

Emily Dickinson

www.gratefulness.org

Saturday, May. 24

one more challenge

2008-05-20T16:39:00.000-07:00

so here's the newest !@#$%^&* garment that i'm supposed to wear every day over my breast and under a camisole so that the breast fluid will subside.... just like the sleeve, it's very heavy and hot as is wearing the camisole which doesn't give my midriff any air.....
the pain from my broken shoulder has flared up probably because the physical therapy treatment switched over to lymphedema treatment... of course it's the same arm as the lymphedema so it's a real trauma for me to be so swollen and in a lot of pain.....
some days it's pretty overwhelming.....sunday ben was here to play in the water and Liam came to stay overnite as he had no school monday - so i got my fix of joy being with little boys and putting the pain aside for a while....

TMI

2008-05-15T13:07:00.000-07:00

this may be too much information for some of you but writing about it helps me to process what has become a nightmarish aftermath of the breast cancer....
yes, the cancer is gone - yes i'm alive and for this i am grateful....
that however does not diminish the current discomfort....
the lymphedema has gotten worse and is causing such discomfort, now more pain and the need for finding ways to adjust to not being able to wear certain clothes....
it has spread pretty badly to my breast and underarm and so i am unable to wear any of my bras which affects the clothes i can wear....
i saw my breast surgeon today who checked for any infection- there is none - she just says it is so full of fluid that it looks infected - besides the swelling it is very hot and red and ugly...i'm not worried about the ugly
as i'm the only one who sees it - :-( and i will spare you all a picture :-)
but the swelling and pain is something else
they are talking about some new fangled garment for the breast that will provide compression and move the fluid and i need to start a newer MLD (manual lymphatic drainage) therapy with the physical therapist 3x weekly and then every day at home myself.....
the hot weather and the horrible sleeve i'm supposed to have on 23 hours a day are not compatible.. as it gets soaking wet from perspiration and that can cause bacteria to grow inside of it !!!!
this is a very discouraging path..... pain and fluid and now more pain and fluid..... on top of the pain cause by the medication that is necessary for 5 years....
i try hard to forget about it but only having the use of 1 arm is a pretty strong reminder
and this 101 degree weather is not helping at all.....!

HAPPY BIRTHDAY TO ME !!!!!

2008-05-11T12:35:00.000-07:00

I am so gratefull to be alive and celebrating with family and friends....
my life is filled with blessings (not including the arm sleeve !!!!!)
and i plan on many more years to celebrate......
i've picked 105 as a good number ....!!!!!!
THANK YOU for all your special wishes and good thoughts!

!@#$%^&()_++_)(&^%$#@! SLEEVE

2008-05-04T20:49:00.000-07:00

my custom made sleeve has arrived and with it a new set of challenges and untold stress. it's uncomfortable, hot , clumsy, heavy, in the way and something i may have to contend with forever....
hopefully if i wear it the prescribed 23 0f 24 hours daily for a while the swelling may get under control and then the lightweight spandex type sleeve and glove will suffice during the day and this monstrosity will only be necessary at night.....
if i don't wear this, the lymphedema could get much worse and some people even lose the use of the affected limb.... i can't afford that !!!!! so am trying my damndest to get used to this.....
"they" say "why me" isn't a good question to ask but at the moment it's the one i'm asking .....
the use of this arm is quite limited with the sleeve on..... i do take it off to eat - otherwise i would have food all over it..... it is washable but don't want to wear it out before its time......
i don't have the bill yet but am hoping my secondary insurance will pick up part of the $450 !!!!!!! since medicare doesn't think this a cancer treatment !! and won't pay for any of it.....

no time......

2008-05-02T19:59:00.000-07:00

for all of us who say we have too much to do.....
too many things on our lists, too many appointments, feeling overwhelmed, no free time....I try to remember this poem by this amazing poet....

"The Art of Disappearing" by Naomi Shihab Nye

When they say Don't I know you?_
say no.__
When they invite you to the party_
remember what parties are like _
before answering._
Someone telling you in a loud voice_
they once wrote a poem._
Greasy sausage balls on a paper plate._
Then reply.__
If they say We should get together_
say why?__
It's not that you don't love them anymore._
You're trying to remember something_
too important to forget._
Trees. The monastery bell at twilight._
Tell them you have a new project._
It will never be finished.__
When someone recognizes you in a grocery store_
nod briefly and become a cabbage._
When someone you haven't seen in ten years_
appears at the door,_
don't start singing him all your new songs._
You will never catch up.__
Walk around feeling like a leaf._
Know you could tumble any second._
Then decide what to do with your time.

A Blessing for Grief

2008-04-28T22:24:00.000-07:00

One of my favorite authors John O Donohue recently died suddenly after just finishing his latest book 'TO BLESS THE SPACE BETWEEN US"
I used his blessing for grief as part of a healing circle for a group of us when our friend Mary died.
It is true that grief begets grief as his words brought to mind so many griefs that have left the ground beneath me fragile....

the death of parents
death of friends
end of a marriage
the loss of a job
friends that are far away
diagnosis of cancer
months of treatment that has left me exhausted
2 broken shoulders
constant head to toe pain as a side effect of post cancer drugs
onset of lymphedema as a result of the cancer surgery......
and many more big and small griefs that creep into daily life.....
The picture shows my friend Inger's house across the street as every morning I watch as everything in the house is taken out, broken up and gone.....it's as if she is being tossed away.... when i raise the blind each morning the grief is there.....
I invite you to discover the work of John O Donohue and in the words of my 4 yr old grandson Ben, acknowledge whatever grief there is in your life and say out loud "Crying is OK!

When you lose someone you love,
Your life becomes strange,
The ground beneath you gets fragile,
Your thoughts make your eyes unsure;
and some dead echo drags your voice down
where words have no confidence.
Your heart has grown heavy with loss;
And though this loss has wounded others too,
no one knows what has been taken from you
When the silence of absence deepens.
Flickers of guilt kindle regret For all that was left unsaid or undone.
There are days when you wake up happy;
Again inside the fullness of life,
Until the moment breaks
And you are thrown back
Onto the black tide of loss.
Days when you have your heart back,
You are able to function well
Until in the middle of work or encounter,
Suddenly with no warning,
You are ambushed by grief
It becomes hard to trust yourself
All you can depend on now is that
Sorrow will remain faithful to itself
More than you, it knows its way
And will find the right time
To pull and pull the rope of grief
Until that coiled hill of tears
Has reduced to its last drop.
Gradually, you will learn acquaintance
With the invisible form of your departed;
And when the work of grief is done,
The wound of loss will heal
And you will have learned
To wean your eyes
From that gap in the air
And be able to enter the hearth
In your soul where your loved one
Has awaited your return
All the time.

From To Bless the Space Between Us by John O Donohue

bedtime with ben

2008-04-26T16:23:00.000-07:00

i was delighted to spend some time with Ben and his grandparents judy and peter on wed....
he was very social and playful and we had a great time kite flying.....

i wanted to describe his bedtime scene as i am still in awe of his little routine and was amazed at how it worked....
after dinner - we played chase the naked boy, bury the naked boy in pillows and let's put on our "jammies".
without one bit of fuss - on went the pajamas, off to the bathroom to brush teeth which he enjoyed, use the potty and then into the bedroom for his nighttime ritual.
he goes to the bookshelf - and says - shall i choose the first one, the second one, the third one (up to the tenth one)
he then chooses one book.....then it's off with the overhead light. - -i leave the room as he sits down in his chair to read it to himself - puts it back chooses another and continues reading...
judy, peter and I are i the kitchen chatting and this little voice comes from the hallway - 'GOOD NIGHT'
just like that he knows it's time to go to bed - we go in the room - he's already snuggled in with his monkey and blankets and he gets his hugs and kisses good night from all of us......
gramma asks if he wants his "sleepy time music" CD - he answers yes and then it's off to sleep......
it may not be so smooth for his parents every night - altho they say it's pretty much the same.....
i would say this is every parent's dream scene for bedtime !!!!!

a paradox of sadness and joy

2008-04-19T11:17:00.000-07:00

how difficult it is to hold joy and sadness at the same time yet so much of life presents us with just that paradox.
yesterday as i prepared to officiate at my friend mary's memorial , i was filled with sadness because she died so young and unnecessarily....
as i opened the living room blind, early in the morning what greeted me was the beauty of new life in all the amazing blossoms that fill my yard.

i cut a lot of roses and the house is filled with the beautiful smell of them and the exquisite aroma of lilacs which totally delight me every year for a couple of weeks.

over 250 people filled the Hayes mansion ballroom for Mary's celebration of life and there was laughter and lots of tears as people shared their memories of a truly remarkable woman.....
it is hard to believe she has died - it is not real to any of us yet....
i hope in the days to come the beauty of flowers like these that i see every day around me can keep the memory of her alive.

one of her greatest gifts was her incredible gardens filled with orchids, roses and may other flowers....
another way my memories are kept alive is when my grandsons come to visit and ask for the giant container of Legos stored under my bed.... when tim and chris were quite young and my husband was out of work one christmas, mary showed up at the door with the largest sets of Legos one could buy to make their christmas more special.... the thousands of pieces sill bring joy to my 3 little boys....
blessed be her journey and may her spirit guide us to love one another more deeply with compassion and nonjudgment...

and the grief goes on.....

2008-04-16T19:28:00.001-07:00

the lymphedema swelling is not improving so monday the physical therapist had me try this garment - (not made for me so didn't fit right) to see if it helped . I was supposed to wear it for 24 hours but couldn't manage it that long...i had it on 6 hours.... they are custom made to the tune of over $500 not covered by medicare!!!!

today the swelling was the same so she wrapped my fingers, hand and arm up to the shoulder for the night to see if that would help...i cannot get fitted for a new glove or sleeve till some of the swelling is reduced..... so she said some compression with the bandage is better than nothing.....
this constant reminder and not being able to use my arm like i ought to be able to is really disheartening.......

wondering

2008-04-09T19:37:00.000-07:00

wondering why i'm so tired...
wondering why my energy level is so low...
wondering why it's so hard to accomplish anything...
and yet i know......
my heart is heavy....my body and soul hurting
the pain of the biopsy incision hurts quite a bit
the swelling of the lymphedema uncomfortable
and the grief of 2 40 yr old friendshiips ending with the death of Inger and Mary B in the last couple of weeks.....
i have to look across the street every day and watch all of what was inger's get taken away, thrown out, packed, trashed etc..... painters, yard workers, contractors by the dozen buzzing around to make the house ready to sell.... it all seems too soon and too fast as if they are
tossing her away with all the "things".
Yes, her spirit lives, but watching the physical things disappear is very hard on my heart..... i can barely yet believe she is not there.....
Mary died yesterday after a month's battle with her body to keep everything working.....
I am honored to have been asked to officiate at her memorial next friday so have been trying to be present to the family as they decide how best to remember this remarkable woman.....
I have not taken the time to grieve as i so easily tell others to do....
i am very aware of the aches in my body and pain in my heart and so i need to take some time to let my feelings take over and the grief show it's horror and reality.....
i have taught myself so well to just keep on going and not take the time i need to grieve any or all of the losses in my life......
i will try harder this weekend to take some time to just let the sorrow surface......

A favorite artist

2008-04-07T19:24:00.001-07:00

I love this artist's clever way of looking at life.....here's my latest favorite

all is ok today.......

2008-04-03T19:59:00.000-07:00

BENIGN.....!!!!!! such a wonderful word...... dr called at 5 today to say all is ok.....
the letdown has me in tears of joy....the last two days of waiting have been terrifying....sadly i guess for the rest of our lives, those of us who have had cancer always have that underlying fear that it can come back.......
thanks for all your good thoughts......
the bruise and swelling and soreness from the surgery is pretty ugly but it will go away ........

Grace can never be possessed but can only be received afresh again and again.
— Rudolf Bultmann

fear

2008-04-02T11:56:00.000-07:00

i'm really scared and although i know that fear paralyzes - it's very hard to breathe through it......
i hope that the lab report comes back fast.....
i am of course worn out today and quite sore
it will surely be a stay in bed day.....

biopsy

2008-03-31T14:55:00.000-07:00

tomorrow i will finally have another biopsy on the other breast after 2 postponements because of a burn infection on my lymphedema hand....
i had the choice of waiting and watching it for 6 months or doing a j wire biopsy now....i chose the biopsy even tho i hate the thoughts of anaesthesia....but i don't want the wondering and worrying for 6 months... they told me it looked benign but they can't be sure without a biopsy...
i am shaky and scared today but have to believe that everything will be OK.....
please hold good thoughts for me......

Soothing peaceful evening

2008-03-28T20:24:00.000-07:00

You've heard of the Balm of gilead......i believe in the balm of kd......
i had the chance to see kd lang in her "watershed"concert in s.f. tues eve......
it was just what i needed to "mend my wounded seams, ....cleanse my tarnished dreams" .... as one of her songs says ......there is a video interview with her at amazon with clips from some of the songs from her new album...
her voicenalways heals me....
the best part of the evening was i got spend some time with chris as christa and ben were away in Minnesota and it was a chance for a "date"with my son....

Easter blessings

2008-03-23T12:23:00.000-07:00

Ostara (pronounced Oh-star-ah) is also called Eostre, Easter, Vernal Equinox, Spring Equinox, and the First Day of Spring. This is the time of year when day & night are equal, and heralds the return of longer days. Signifying when light triumphs over darkness.

In countries that are located in the Northern Hemisphere this is a time when seeds are planted. This relates to the neo-pagan philosophy of planting new ideas for the coming year.

Ostara/Eostre is the German Goddess of the Dawn/Spring. Ostara is one of the most important of all the Germanic holidays. Eostre symbols are the egg and the rabbit. The story behind this is that a white rabbit fell in love with Eostre and to demonstrate his love, he laid colored eggs everyday.

The rabbit symbolizes innocence and continuing fertility. The egg symbolizes birth and rebirth. Estrogen's root word is Eostre. The legend of the egg hunt comes from the fact that birds (chickens) were not as domesticated as they are now and in the spring our forefathers would literally have to hunt for the eggs.

The neo-pagan version of Ostara is a celebration of birth and new life. The time of year when death holds no power over the living. It is the return of the Goddess after her winter hibernation. It is the time of the year when the Goddess and God consummate their love. Many of the neo-pagan Ostara rituals have fertility implications and are largely sexual in nature.

Two other cultural Ostara celebrations are Greek and Christian: The Greek myth of Persephone also has it relates to Ostara. When Persephone returns in the spring, her mother's joy brings forth life once more to the world. Easter, which is celebrated on the first Sunday after the first full moon falling after Ostara. The Christianity version of Eostre also follows the rebirth pattern.

Ostara is mainly a day to celebrate new life and new beginnings. It is a time to plant new ideas and seeds for the future, both literally and figuratively.

BLESSED BE NEW BEGINNINGS......

spring morning

2008-03-22T11:18:00.000-07:00

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

balance

2008-03-18T12:27:00.000-07:00

the extreme daily pain thankfully is balanced with my three little boys...this past sunday they came to make easter cookies....i think they ate more dough than they cut out
we also had lots of fun playing inside and out....
they are such angels - not a moment's headache or problem of any kind....
i am so blessed to have these delightfully special creatures in my life.....
I am pretty much laid out flat with an horrific cold

biopsy news

2008-03-17T16:47:00.000-07:00

a visit with the surgeon today came up with another postponing of the breast biopsy surgery.....
the burn is not healed as well as she's like to see it and i woke up this morning with a horrible head cold.....so that also means no surgery....
she told me to relax about it and just wait.......
relax???? me????
i wish it were over...
the trauma of the burn has caused tremendous swelling of the lymphedema hand and arm - not a pretty sight.....

biopsy issue

2008-03-14T20:56:00.000-07:00

a couple of weeks ago, my breast biopsy was postponed because of an"abnormal" EKG which turned out to be normal after a 2nd one....
now there is a chance that it will be postponed again because of a mean infection on the hand that has lymphedema. For the rest of my life, that hand and arm are supposed to be protected as best as is possible from any kind of cut, bruise burn etc....as any one of those an easily cause serious infections and further affect the lymphatic system....
well 2 weeks ago while shopping for rotisserie chickens to bring to Inger's family - i burned the back of my hand reaching into the hot tray....the burn was about 3 by 4 inches......
the first visit to the internist decided just to watch it and apply antibiotic cream - she didn't think it was infected at the time....
it blistered, the blisters fell off and yesterday with my check up with the oncologist, she said it was hot and red and infected so she put me on a regimen of antibiotics....
the swelling of the lymphedema is quite bad caused by the trauma of the burn.....
my surgeon will look at it monday morning to decide if the surgery is a go on tues......
on more wave to ride.....
i of course don't even want the surgery, but given that it is the best thing to do - i want to get it over with.....

happy day!

2008-03-12T22:02:00.000-07:00

today Ben spent the day here as he had a cough that might not have worked at school.....
i really needed the joy and happiness as i am in constant pain just about all over my body....
the side effects of the post cancer drug are just awful..... every muscle and joint hurts....sometimes i can hardly move....
we went to the bagel store for a morning snack, took a tour of the local garden center and then spent over an hour "making mud pies together"
a bath in the sink was in order!!!!!

Ben and his pacifier

2008-03-05T10:39:00.001-08:00

Many of you are familiar with my daughter in law Christa's blog about life with Ben and the phenomenon of hyperlexia which is the daily journey of their family. If you haven't found Christa's blog, I'd invite you to read the latest post - (it's long but well worth it) where she describes Ben's grief of giving up his pacifier. It is an exquisite portrait of parents validating and supporting the grief of a little boy whose heart is broken.....

more trauma

2008-03-03T18:21:00.000-08:00

the biopsy has been postponed because of "an abnormal" EKG ....
my internist called today with that news which of course caused a huge meltdown....i was scared enough of the biopsy - now i'm scared about whatever an "abnormal" EKG can mean.....
she sent me for another EKG and tons of lab work this afternoon and will see me on Wed. to see if she can figure out what's going on....
the surgeon and anaesthegeologist won't do surgery if they see anything that is "abnormal"
It's been a day with lots of tears.....

another scare

2008-03-03T10:00:00.000-08:00

tomorrow i will have another biopsy on the other breast as last week's mammogram turned up a new individual calcification.....
i had the choice of waiting and watching it for 6 months or doing a j wire biopsy now....i chose the biopsy even tho i hate the thoughts of anaesthesia....but i don't want the wondering and worrying for 6 months... they told me it looked benign but they can't be sure without a biopsy...
i am shaky and scared today but have to believe that everything will be OK.....
please hold good thoughts for me......

Final Goodbyes

2008-02-29T20:32:00.000-08:00

I was priviliged to officiate at the memorial service and burial rite for Inger on Wed.....it was held at Lima Cedar Lawn in Fremont and the staff there was very cooperative and respectful of the families wishes.
the chapel was filled to capacity and many of the family and friends spoke about how important Inger was in their lives and what a wonderful spirit she had right up until her final days.
During the days preceding and preparing and presiding the ceremony, i have not yet taken the time to grieve. i did my best to breathe thru the funeral and gathering afterwards and now am in the collapse mode.....it is very hard to look across the street and know that she is gone forever.....
it is such an honor to be able to prepare the words and ritual for a grieving family and create a service that they will remember as a fitting goodby to the one they loved.
I know she would have been happy with the tributes coming from so many.......
blessed be her journey......

INGER AT REST

2008-02-23T16:42:00.000-08:00

my friend and neighbor of 41 years, Inger Marie Robinson died very peacefully yesterday afternoon at 1:00 p.m.surrounded by many of her family and friends. The end was gentle.... a few breaths and death came softly - a blessing for her and those gathered....Hospice took care of all the details..... i don't know how families who do not use this wonderful group make it through the maze of details when a death occurs.
Today i went with the family to the mortuary to support them in making the final choices....
she will be "buried" in a wall next to her mom in Fremont.
She was surrogate mom to my boys and the picture above shows her delight in one of my grandchildren, Ben. She also delighted in Liam and Ronan when they were around....
i just luckily had the camera out while we were all raking last fall......
may her spirit live in the hearts of we who loved her.....blessed be her journey

the vigil goes on

2008-02-21T22:24:00.000-08:00

Inger is now on morphine every 2 hours.....and pretty incoherent.....today she didn't want any water or food.....

the family is of course stressed to the limit and i am spending more and more time with them
I went to the grocery store and cooked dinner for 8 tonite.....
it's quite chaotic when everyone is around as everyone is doing grief in their own way and they are not always kind to each other.....
even the dog is pacing - knowing something is going on......her brother arrived from Idaho yestereay - they spent a long time talking and telling each other the things they needed to say....and then today she hasn't spoken a word....except very strong NO to water and food.....
my radiologist visit today brought me extra stress
I was told to make an appointment for a biopsy as there is some kind of calcium "thing"they don't like to see.....it could be nothing but needs to be biopsied.....it's on the other breast......not the one where they removed the cancer.....
i was pretty shook up with the news.....
these words by one of my favorite writers seem to fit today.... it's called BLESSING and i offer it to myself.....

On the day when
the weight deadens
on your shoulders
and you stumble,
may the clay dance
to balance you.

And when your eyes
freeze behind
the grey window
and the ghost of loss
gets in to you,
may a flock of colours,
indigo, red, green,
and azure blue
come to awaken in you
a meadow of delight.

When the canvas frays
in the currach of thought
and a stain of ocean
blackens beneath you,
may there come across the waters
a path of yellow moonlight
to bring you safely home.

May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.
And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.

~John O'Donohue

more stress

2008-02-21T09:18:00.001-08:00

last week i had my 6 month ultrasound and mammogram and received an all clear from the dr who read them.....
now yesterday - a week later they called and want me to come back for another mammogram and ultrasound.....they said they want to check further.....
i had a wicked meltdown....
between the many hours caring for Inger as her family's back up and this scare...i am terribly stressed....
i know they have to be extra cautious and i'm glad for that.....but i am very scared.......it is the other breast they are checking on next tues morning.....
send me lots of good thoughts and energy................

Healing time

2008-02-19T21:31:00.000-08:00

Some friends who were supposed to come to dinner Sun eve cancelled so mid afternoon i decided my spirit needed to see the ocean for some healing and rest..... i drove to Santa Cruz and walked on the sand and just watched the waves ebb and flow.... of course i had to bring home pieces of the sea which smell to high heavens but remind me of the peace and healing of the waves and the wind..... the constant care of my friend as she is dying is scary and exhausting so it was a wonderful blessing to soak in the smell and sound of the ocean....she had lots of family there with her on sunday so i wasn't needed in the afternoon...... i didn't have my camera so i made a little collection on the table to photograph....

souldancer

!@#$%^&*( ARM BANDAGE

lymphedema lament

6 month good news

the eyes have it............

the empty house

vortex

hang in there

and the beat goes on

HAPPY VALENTINE'S DAY

does anyone want some more pain?

more stress

THE WAITING GAME

bits,pieces,breaks

ode to joy

who needs this?

twelfth night

SOUL STORY

HAPPY NEW YEAR

The Winter of Listening by David Whyte

with humble gratitude

contrasts

on the road again

pain,pain,pain

and.........

I WANT A DAY OFF

HOORAY BARACK !

BLESSED BE !

Election day thoughts

HALLOWEEN

morning

remembering

the lymphedema journey continues

the hard part

my hero gloria steinem

joy, joy, joy

TEARS

Breathing easier

Retreat to the Ocean

Life in the Pain Lane

A Call to Arms by Anne Lamott

autumn amazement

WEEKEND JOY

brain freeze

BALANCE

Sooooooooooooooo true

Ingenuity

so true.....

NIGHTLIGHT

catching up

ROUGH DAYS

a scary pain

Quote for today

meltdown

Heartsick again

heart and body ache

Family Volleyball

More on Lymphedema

DANCE

WORD FOR THE DAY

one more challenge

TMI

HAPPY BIRTHDAY TO ME !!!!!

!@#$%^&*()_++_)(*&^%$#@! SLEEVE

no time......

A Blessing for Grief

bedtime with ben

a paradox of sadness and joy

and the grief goes on.....

wondering

A favorite artist

all is ok today.......

fear

biopsy

Soothing peaceful evening

Easter blessings

spring morning

balance

biopsy news

biopsy issue

!@#$%^&()_++_)(&^%$#@! SLEEVE