one more challenge

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

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 !!!!!

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

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......

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

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

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

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.....

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

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

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

all is ok today.......

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

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

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

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

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

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

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

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

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!

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

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

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

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

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

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

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

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

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....

vigil

i was awakened once again at 7:30 a.m. with Inger's daughter needing help to change not only her diaper but all the sheets and pads on the bed..... i'm trying hard to protect my body as we roll her and try to keep her clean and comfortable....she gets really feisty and yells at us...so this morning i tried a trick my kids have taught that they use with my grandchildren..... "In 3 minutes, we're going to change you and clean your bed"...it worked like a charm....
she isn't very aware of time as such so we only waited a minute or so and then began the rolling ritual......
the hospice nurse said yesterday that she is really slipping.... only sipping a couple of swallows of ensure each day..... and it wouldn't be much longer - but she is still pretty strong and i believe she is waiting for her estranged twin brother to arrive from Idaho this coming wed.......
we have talked a tiny bit about her memorial service - mostly she leaves it up to the kids - only 1 of whom really wants to deal with it....
we do have some plans made... and she seems to be happy that i will be the officiant.....
all of the pain in my body is worse and of course i am exhausted....
this morning i get a break from "on call duty" for Ronan's 4th birthday "party".....it will be a happy time to be surrounded by precious little people and my family.....

I am beautiful

That love is all there is, Is all we know of love..... IT IS ENOUGH

Emily Dickinson

This is a hard day for anyone who is not a couple - even for some who are couples....... hallmark and the culture surrounds us with cuddling, cooing and caressing not acknowledging that there are many of us who do not have these things in our lives....
i choose today to honor and love myself and to commit to showing family and friends how much i love them. Embodying self-love is the greatest example we can set for our children, for our loved ones, for our friends, and for all those we encounter in our lives. may we acknowledge what amazing individuals we are and how much we deserve to love ourselves.....

witness to life and death

my friend inger - across the street neighbor for 41 years is in the process of dying.... she has been having cheo for 2 years for cancer and the doctors have told her no more chemo and no more dr visits as they can do no more for her.....
she is very jaundiced because of liver failure and hospice is now a part of her daily routine.
she is pretty much confined to bed - they delivered a hospital bed today....
I am spending as much time as i can sitting with her...she asks for me a lot....
it is scary and sad to watch her slipping away altho she is a fighter and will probably live a lot longer than they expect....
i have watched my parents as they died and had friends and clients die but never had a friend that i see day to day as she is in the process of journeying to death....
i need strength to face this and don't have a lot physically or emotionally so am asking for any spare energy you can send my way...

wise words

a line from my daughter-in-law's more than wonderful blog
jumped out at me this morning, brought a few tears and made me think it would make a good mantra for life in general.....
and especially when i tend to hold on to expectations so tightly......
'CHUCK YOUR EXPECTATIONS OVERBOARD AND HANG ON.....!"
I will work on that today and in the days to come.....
thanks Christa.....
I so love your writing..... and so love you too!!!!!

WHEN I DARE TO BE powerful—to use my strength in the service of my vision, then it
becomes less and less important whether I am afraid.
Audre Lorde

worn out

although i loved my visit to Florida - my body sure didn't.....
-my dislocated rib seems way more dislocated and very painful
-the stiffness and pain in joints and muscles is worse
and my hand and arm are really swollen.....lymphedema doesn't fly well!!!!
I drove to Morgan Hill today to the lymphedema clinic to get a new sleeve and glove....if you remember mine got mistakenly thrown out in Florida.....
Wow!they're expensive....and insurance won't pay despite what's called the Women's Cancer Act passed in 1998 which specifically mentions that lymphedema treatment must be covered.
The nurse at the clinic keeps bugging them but they refuse to budge.....
one of these days when i get up some energy i plan to challenge medicare and blue shield based on the law.
the insurance companies sure rule this world !!!!!!
i'm sure it will take some time for my body to recover from the plane trips.....

Back to Reality

I had a free plane ticket so went to visit my sister Geri in Naples FL. My sister christine also flew down for fewer days....i was there 10 days in perfetc weather.... no humidity and no extreme heat...which was good news for my hot flashes....it was just good for all of us to be together....
geri and i mostly ate !, collected shells and shopped the dozens of consignment shops that are there....
the beautiful navel oranges are from my friend bob's who lives in Vencie about an hour's drive north and the grapefruits grow right in the yard at geri & tom's......
while everyone watched the super bowl, geri and i went to the movies to see "JUNO" (don't miss it....)
One night we went to the Philharmonic theater to see the musical DROWSY CHAPERONE which was wonderful...
my body took a beating from the plane trips.... my rib is in a lot of pain and the lymphedema swelling is always worse after flying..... in the midst of the week, my compression sleeve and glove were accidently thrown out in the trash so i have an appt on fri to replace them
geri and i bandaged my arm and hand before the trip and did a pretty good job but it kept slipping and was a nuisance....having this the rest of my life sucks !!!
i had missed connections with the airlines and they had to juggle me all over hell and back and i didn't arrive back here till midnite (3 a.m. body time) and not in san jose as planned....i plan to sleep a lot to try and catch up.....

wonderful link

i do hope you will check out this amazing website - Hyperlexicon - noted in the right hand column...
As some of you know, Ben, my just turned 4 ! grandson has been "diagnosed " with HYPERLEXIA a phenomenon which has its own set of challenges and daily joys and sadness. Rather than read scientific web pages explaining this rather unknown "condition," i think you would enjoy the bits and pieces of Ben's life that Christa so beautifully describes. The pictures that she paints of this amazing little boy are priceless and filled with information....
she is an amazing writer and as she describes any moments with ben, i can feel like i am right there with them....
even tho you may not know anyone who has hyperlexia, her writing is a joy and sheds so much life on a subject seemingly ignored by many....
it's worth it when you have the time to go back in the archives and follow this amazing journey.
the honesty and clarity that Christa brings to us is no less amazing than she is ......i am so proud and fortunate to have her as a daughter.......

big words - big pain

Here's the fancy term for what i did to myself......
Costochondral separation - the rib is torn loose from the costal cartilage and is detached from the sternum.
what i'm reading says it takes weeks and weeks to heal !@#$%^&*()

like i need more pain!

went to check with the dr about the rib injury's horrible pain....
she says i did not injure the rib but pulled all the cartilage that holds the ribs together and it is very inflamed.... there's a fancy name for it, but the bottom line is big time pain!
she told me to take the rest of the week off from all activity and gave me double doses of pain meds.....
so far - 2 hours later they aren't helping.....
she also said my whole body is traumatized fro the ongoing cycle of pain from the shoulder, the polymyalgia, the side effects of cancer drug etc....and that it may take some serious muscle relaxers to get ahead of the cycle and break it..... so far don't have to do that if these pain meds help.....
i should be pretty loopy for the rest of the week......
i am OH SO TIRED OF PAIN.........that won't let up......

Down,down,down

Ever since the big rain and wind storm on Jan 6th my internet access,has been DOWN
This past fri i fell DOWN - tripped in the living room putting away Christmas and have bruised my ribs big time.....horrible pain...
Because of the constant getting nowhere with Earthlink for 9 days and now this horrendous pain my spirits and psyche are DOWN.....
with lots of help from Christopher, a new modem and this poem i found shortly after getting back online and checking one of my most favorite blogs have me feeling a little less DOWN..... I love the poem and the site where if appeared seemingly just for me today....

We have not come here to take prisoners,
But to surrender ever more deeply
To freedom and joy.

We have not come into this exquisite world
To hold ourselves hostage from love.

Run my dear,
From anything
That may not strengthen
Your precious budding wings.

Run like hell my dear,
From anyone likely
To put a sharp knife
Into the sacred, tender vision
Of your beautiful heart.

We have a duty to befriend
Those aspects of obedience
That stand outside of our house
And shout to our reason
"O please, O please,
Come out and play."

For we have not come here to take prisoners
Or to confine our wondrous spirits,

But to experience ever and ever more deeply
Our divine courage, freedom and
Light.

~Hafiz

I've had house guests since the 26th so am finally back to having my house and time to myself....so will write something hopefully today.....
meanwhile............this fits the bill for this morning....

www.gratefulness.org
WORD FOR THE DAY
Thursday, Jan. 3

But only the dance is sure! Make it your own.
Who can tell What is to come of it?

William Carlos Williams
"The Dance" in Pictures from Brueghel

www.gratefulness.org
WORD FOR THE DAY
Monday, Dec. 31

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

a love video

Tim performed at his office party......
as part of his preparation for a solo act, he was scanning YouTube for ideas for choreography to fill a sixteen second instrumental break in the karaoke track of Jerry Herman's "We Need a Little Christmas."

While watching Angela Lansbury, Lucille Ball, Mitzi Gaynor, the Purdue University Glee Club, various amateur dance and holiday recitals, and even the Sims(!), he discovered that the instrumental break is a feature for radio (and, apparently karaoke). Most of the live shows skip right past it.

Then he found this homemade music video of the song, done by a local teenager, and starring her family.

And while the actors are self-conscious, the whole thing is done with love.

Way more sincere than the Purdue Glee Club.
When he watched it he said...."
I'm crossing my fingers that when our boys are teenagers, they have the chutzpah to do this un-ironically."

I pass it on as a tribute to all that is good in human nature and hope that families around the world can find peace and krismas love.

another view

Hi friends, I thought you might want to see the response I’ve written for the Newsweek/Washington Post On Faith site, to the question below:

"The U.S. House of Representatives approved HR 847 recognizing the importance of Christianity and Christmas. Would you have voted for this resolution? How would you amend it?
A Pagan’s Christmas Resolution
By Starhawk

Would I vote for a resolution affirming the importance and contributions of Christmas and Christianity? As my readers may have noted, I’m a Pagan, but I’d vote for such a resolution—heck, I’d even introduce it, if it went like this:

“Whereas Christians and Christianity are of undeniable importance in the world and the foundation of this country, in respect for his example and story at this time of year we make the following statements:

“Whereas Jesus Christ was born in a stable because his parents could not find shelter, and whereas in the last weeks we as a nation have allowed the destruction of the last remaining housing for the poor in New Orleans, and whereas our streets are full of the cold and the homeless, we repent of our policies and in his memory commit to housing all who wander without a roof or a welcome in our cities and our towns.

“Whereas Christ was born among the poor, lived and preached to the poor, we repent of the selfishness and shortsightedness that has failed to provide for all of our children, and commit ourselves to provide health care for all children and for all of the poor.

“Whereas Christ commanded us to ‘love our neighbors as ourselves’ we repent of the walls we have drawn across borders, the deaths of those who have tried to cross the deserts in search of a better life, the wall we have supported that cleaves the Holy Land itself in two and confiscates the farmland of the Palestinians, cleaves villages in two, and stands as a lasting monument to our failure to achieve peace, and we commit ourselves to establish justice which alone can provide true security.



“Whereas Christ has been called the Prince of Peace, we repent of our eagerness to use war and violence as the answer to every international situation, of the horrific and destructive war we have waged in Iraq which has claimed tens of thousands of lives, and we commit ourselves to a withdrawal of our armies, to a new foreign policy based on the building of relationships, not the bombing of children, and to fostering and nurturing peace.”
Anything less is just a bunch of empty words, and real Christians must be cringing at the hypocrisy.

If I may quote Jackson Browne’s beautiful song, The Rebel Jesus:

“Now pardon me if I have seemed

To take the tone of judgment

For I've no wish to come between

This day and your enjoyment

In a life of hardship and of earthly toil

There's a need for anything that frees us

So I bid you pleasure

And I bid you cheer

From a heathen and a Pagan

On the side of the rebel Jesus.”

As light is born out of darkness, may hope, love and compassion be kindled this season,

Starhawk

HAPPY SOLSTICE

Read lots more about this holiday here

words i need to hear

yesterday was a particularly hard day with pain and feeling overwhelmed with all the holiday stuff i put on myself..... i think the pain that is constant adds to the overwhelm..... 2 different people that I encountered said soft words that i needed to hear as i can be so hard on myself..
i went to postal plus at the corner to mail a package and the woman there knows me and my journey this past year as i go there instead of the post office whenever i need anything..
in the course of our conversation and her asking me how i was doing - i told her i had my tree finished and Anna Claus and angels in place and that my cards will be late and packages to my family will be late she said "Good for you for doing what makes you feel good and decorating like you want to ..."
Then off to the rheumatologist for a check up on the Polymyalgia.... we talked about the serious pain from that and the cancer prevention drug and he said" you know, you are an awesome woman...to be admired.....you inspire us - with all that is going on in your body, you just keep going!" Soft and gentle words from people who barely know me, but they just entered my heart and lifted my spirits in the moment..... I guess I need to tell myself more often how awesome I am ( of course a lot of it comes from my Taurus stubbornness and my memory of debbie reynolds in the unsinkable molly brown singing I AIN'T DOWN YET !

the pictures aren't great but give an idea of some of the decorating....

www.gratefulness.org
WORD FOR THE DAY
Monday, Dec. 17

One of the most calming and powerful actions you can do to intervene in a stormy world is to stand up and show your soul. Struggling souls catch light from other souls who are fully lit and willing to show it.

Clarissa Pinkola Estes

Oh Christmas tree....

In years gone by, i would go get my tree, drag it into the house, put it in the stand, string hundreds of lights and add lots and lots of ornaments....as the years have progressed, i now have friends help me get the tree - tim and chris get it in the stand and friends drag boxes of lights and decorations from the garage....
it's hard to realize that i cannot do it by myself, but those days are gone forever....particularly this year with the remnants of a broken shoulder, lymphedema, lots of pain an fatigue....
so i'm practicing letting go......it's very hard for me......
this past week chris got the outside lights up which so delight me....
yesterday my friend nicolas spent the day with me dragging boxes from the garage, stringing lights and decorating the tree........not much else is done but i am so happy to be able to see my tree finished.....angels and ms claus are still in the garage....
the mess left behind in the living room will take a few days to clear up but i am going to ask a friend for help.......
friends and i'm sure family wonder why i do all this decorating when i'm here alone for the holidays....but it brings me happiness and joy to be surrounded with the beautiful things i have acquired over the years.... since all former traditions have disappeared or changed, my decorated home is what i can hold onto....

check up

my oncology check ups are every 3 months and yesterday's confirmed that everything is OK.....
surgery scar is still a bit sore -normal
breasts tender - normal
fatigue is still hanging on - normal
pain from Arimidex - normal
blood work - normal
she gave me a new cancer prevention drug to replace the arimidex to see if i would have less pain -it will take a month to see if there is a change.....
good to hear that everything is "normal"even tho i still don't feel "normal"...............

holiday adventures with 3 elves

Liam, Ronan and Ben came down for an overnite adventure to work on christmas projects.....
alas the only one we finished was the cookie baking....
decorating the muppet tree, putting up the manger got sidetracked with a pretend snowball "fight" with the artificial snow that was meant for the manger setting...
once the bag was opened it was a free for all.....thankfully the packaing said non-allergenic and no chemicals....
i'll be pickig up "sowflakes" for weeks....interest spans were short for dressing the muppets and hanging ornaments as outdoors called for wagon rides, driving around the neighborhood after dark to see lights and decorations ( YES !!!!!! 3 car seats in the back seat was quite an adventure of its own !!.......) and watching holiday dvd's took up time....
it was a great time and i need to thank my sister christine for all her help....i couldn't have done it alone..... praise and blessings be to all single parents....

...and the pain goes on

i have 2 physical therapy appts a week to work on restoring strength to the shoulder i broke.... as she works on the muscles and i work on the exercises, it really hurts.... i also realize that the other shoulder that i broke 2 years ago hasn't healed because the therapy was done poorly....so it i'm very sore. i have tight knots and pain in my neck and shoulder blades as they are connected to the injured shoulders. add the pain of the polymyalgia and the side effects of Arimidex which are listed as: Anxiety; Back, bone, breast, joint, pelvic pain; flu-like symptoms (tiredness; muscle aches); headache; hot flashes; sleeplessness; weakness.....
and i spend the days and nights in a lot of pain and am pretty weak. I did manage to buy my christmas tree yesterday with the help of home depot staff and my friend who has a truck....it's laying on its side on the walkway waiting for christopher to put it in the stand - a task i once could do alone.......and wish i could still do...
it's so very hard to have to ask and wait for help....

Remembering

You have to remember to make it all over again every day, the angel said to me.
Otherwise it goes all to hell.

http://www.storypeople.com/