sunday distraction

stones didn't pass so am off to the kidney stone surgeon....these two angels helped distract me on sunday

Quick update

CT scan showed a kidney stone obstructing the kidney and causing swelling...therefore the high sed rate which is a sign of inflammation..........letting it sit there can cause permanent kidney damage
was sent to urologist this afternoon.....who thinks it's good news (meaning no cancer showing in CT scan)- it is good news from that perspective but i certainly don't need or want this further bump in the road......
solution
medication over the weekend to help it pass on its own or surgery on monday which is already scheduled....it's outpatient -
but i hate the thoughts of anethesia and this whole f!@#$%^&*() mess.......
please join with me in asking the universe to pass this stone before monday......
light all the candles and talk to all good spirits, fairiess, gods, goddesses to ask them to join in that wish.......
i sure wish this bumpy road would smooth out.....

An Anniversary

today marks the 1 yr anniversary of hearing those frightening words from my surgeon
"now we need to talk about breast cancer"
they changed my life forever
now every twinge,
every pain
every slight change in my body
is scary
the year taken out of my life
with drips, and machines, and burns
and no hair
with fear and fatigue
and thousands of tears
with pain and protesting
utter grief and despair
weakness and wondering
terror and trials
family caring for me
friends to quietly listen
all of it mostly a blur....
the first year is gone
passed me by
sometimes inn a fog
sometimes in frustration
sometimes in fear
and now the journey continues...
5 years of preventative medicine
numb fingers and toes
terrible joint pain
ongoing fatigue
a much slowed down life
underlying worry
sagging energy
and simple humble gratitude
i am here
i am blessed
i have survived.....

YUK!

2 quarts of banana barium !!!! at 7:00 a.m........ugh! then wait an hour for it to make its way through my abdomen - then an iodine IV and then the CT scan looking for reasons for my elevated sed rate....i was pretty beat up for the rest of the day as any kind of medical procedure these days does me in........dr appt tomorrow so hope there are some answers.....

fear of the unknown again

3rd blood test still shows sed rate off the charts and dr is still mystified so tomorrow am having a CT scan and chest xray looking for anything that might be going on in my body....
prednisone dose is awful.... not knowing excrutiating......
will it ever end....?

story people

Here's the Story of the Day:
Words of Comfort

There are days I drop words of comfort on myself like falling rain & remember it is enough to be taken care of by myself.

how is wish this were true every day...today it's hard to believe.....

the unknown

further tests yesterday confirmed a quadruple increase in my sed rate within the last month....( not even sure what that means and reading on the internet is very scary)
dr baffled so far...tripled my prednisone dose which makes my body go crazy.......i see him again monday.....
fear looms when the unknown appears.......

issues, issues, issues

Routine blood work has found that the sed rate which measures PMR has quadrupled in the space of a month as well as another # which reflects a flare -up has tripled......so i need to see the rheumatolgist and my internist has doubled my prednisone dose..... not at all what i need..... the joint pain from the arimidex continues so goddess only knows what the hell in going on......all i know is i'm in pain and the prednisone is screwing up my body in general....
ohhhhh for a day when i can fell like myself......

ONGOING PAIN

some kind of flare up going on with the PMR....mornings are awful - i can hardly move with the leg and hip pain.....after a couple of hours and pills , things are a bit better....it is so discouraging....
am i paying the price for my trip and my dancing?????
was it worth it????
am having more blood tests tomorrow to check sed rate which determines if it is a flare up or something else....

Melancholy

Things i am missing about the North Shore - where Beverly Ma is....
my family
Rose Hip Farm
fried clam rolls
lobster of any kind
the smell of the Atlantic ocen
everything so green
small towns
new england architecture
home made ice cream stands
maple walnut ice cream
large sprawling yards familiar
smells, sounds, sights from my childhood...
i always feel real melanchly coming back home.....

Guess what I did on Sunday!

i haven't been able to dance for close to a year and made the decision as part of healing my body and soul that i would do the fall showcase even tho i hadn't practiced much, was exhausted from my trip and the joint pain is still bad. it was a miraculous day - i did it very well and got lots of amazing feedback..... the judge said he couldn't find anything to correct or criticize and felt it was a truly spiritual experience..... a perfect stranger told me i was the most graceful and beautiful dancer all day !!!!!!!!! how's that for healing power !!!!!

VACATION BREAK

apologies to faithful readers who have emailed and asked "what's up"
I went back to Beverly MA - my birthplace to visit sisters and brother....5 out of 6 of us were there....so i took a break from posting. it was exhausting to travel and unlike when i'm home i didn't rest every day so my body is screaming with fatigue and pain. The joint pain from the Polymyalgia Rheumtica and drug side effect flared up. All i want to do is sleep.
i did have a wonderful time along with the melancholy and sadness that always overpowers me when i am there.... as in any family, issues from the past and present can bring on emotional pain and helplessness...
my pefect joy of the trip was Alamo's rental car.....i signed up for the least expensive economy car and look what awaited me in the lot...!!!@!!!!! a PT Cruiser
i was overwhelmed and overjoyed with excitment as i have always wanted a convertible....the weather was perfect the whole time and i never had the top up night or day..... !!!!!!! why have a convertible with a top up ?????!!!!
I reconnected with a couple of high school and college friends which was fun....
being away was theraputic and now the reality of physical therapy and healing is back on a daily basis.
the lymphedema behaved - swelled more on the plane but faithfully wore the damn glove and sleeve every day.....

Much needed break

the pain seems to be getting worse....yesterday i resorted to real pain pills....
so seeing my little guys took my mind off the pain...
i went to oakland friday to play with Ben while C&C did some last minute chores before leaving for the airport....
ben decided he wanted to take his baby in the stroller to the playground which is down a steep hill and around a corner...running to keep up with him was quite a challenge but we made it and spent most of the time building sand mountains which allowed me to sit in the shade. I called chris to come and get us so we wouldn't need to climb the hill....Ben needed a wash down with the hose a we really got into the sand....
unfortunately the weather in MN is wet and rainy so they've had to be in gramma and grampa's house a lot....
sunday i went to berkeley to play with ronan and liam while mom and dad did some errands.
they had all spent a week at music camp so i was treated to some clowning routines that tim taught ronan....he was hysterical ...liam was content with his baseball bat.....
little boys sure do bring magic to my heart and sore body.....

PAIN TRAIN

i wish i could get off this pain train but so far it just keeps rolling along.....
i'm trying to dance and it hurts like hell with the joint pain....the rheumatologist upped the prednisone dose but i hate taking more as it's hell on the immune system and very dangerous in terms of breaking bones...
he sent me for some more blood tsts to see if the PMR is flaring or is the pain a result of the the cancer drug Arimidex...i think it's the latter and i have to take it for 5 years.....
i've noticed my knees are in worse shape and my hips and back are very painful
an then there's the damn lymphedema swelling....
i want my life back..... so far it's not in sight.....

Don't like it at all

so here's my lifetime achievment award....finally got the glove part although it's "off the shelf" as the custom fitted one they would like me to have is $300 or more.......so i will try this for a while ...this one was $60 !!! and it gets filthy really quickly....I may try to dye it with tea or something so it will be closer to the arm sleeve in color.... it's hot, it's scratchy, and just a real pain!!! I wash each piece each night and start each day tugging at the arm sleeve to get it on..... a rubber kitchen glove with the little bumps on it is a help to push it up my arm.... so what is it i said a few days ago about it's not over.....!!!! this lymphedema is a lifetime condition although i recently read that it can sometimes go into remission.....so that's my hope.....
hope along with me !!!!!

quote

I teach my sighs to lengthen into songs.

Theodore Roethke

www.gratefulness.org
WORD FOR THE DAY
Sunday, Aug. 12

Pain

every day at least a few people comment to me..."aren't you glad it's over"
but the reality is....... it isn't.
true the horror of chemo and radiation is past but the residual effects and side effects of drugs are still very much with me....
i don't know a day without pain....the broken shoulder pain is still very much alive....
a side effect of Arimidex (the 5 yr drug to prevent recurrence ) causes joint pain which somedays is pretty severe and the PMR pain which I already had is raising its ugly head.
I am trying to dance but it can become excrutiating - but i'm sticking with it so i won't become "frozen" in all my joints....my hope is that one of these days i will be pain free but right now it feels unlikely...
so the "it's over" part is far from the truth......

Belief

I am where I am
because I believe in all possibilities.
- Whoopie Goldberg

next challenge

the lymphedema therapists feel that i definitely need the glove.....i was hoping against all hope that i wouldn't need it but my fingers and hand are still pretty swollen and need the compression.
so it's a another 30 mile trip to get fitted and believe it or not the glove is more expensive than the sleeve ! the thoughts of having my hand covered is daunting and what will i do about all the rings i wear !!!!!!

GRATITUDE

Ironically, gratitude's most powerful mysteries are often revealed when we are struggling in the midst of personal turmoil. Sarah Ban Breathnach
Some of the things I am grateful for today: there are many more.......
* 3 little boys who bring me laughter and joy
* my incredible sons and equally incredible wives
* the huge black bumble bee buzzing in the holly hocks as i type
* the dozens of baby tomatoes already ripe in my garden
* fresh blooms of the "angel Face" rose this morning
* the chance to see my friend Mark perform
* soft green sheets to rest upon
* "So You Think You Can Dance " on tv tonite
* My cup of Peet's coffee
* the smell of fresh basil coming thru my window
* reconnecting with a college friend from 40 years ago!
* lavender and lemongrass and rosemary to pick for the kitchen
* the dozens of birds at the feeder