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

HOPE

I see these hollyhocks out the window as i type - brought them home from Rose Hip Farm in Beverly as little 4 inch plants last summer

It is a huge danger to pretend that awful things do not happen. But you need enough hope to keep going. I am trying to make hope. Flowers grow out of darkness.
Corita Kent

REMIND ME

Routine has never been my strong suit( surprise !!!)
so i need your help in reminding me that the lymphedema exercises are a must everyday.....so far I haven't been keeping up.....
an email or comment gently asking if i'm dong them or tenderly reminding me that i need to remember to do them would be really helpful.....
i can't do this alone and would really appreciate the support ...
blessings and thanks.....

ON WRITING

What is your truth? Ask your heart, your back, your bones, and your dreams. Listen to that truth with your whole body. Understand that this truth will destroy no one and that you're too old to be sent to your room.

Move into your truth as though it were an old house. Walk through each room. See, hear, and feel what it is to live there. Try to love what you find, and remember the words that come to you as you explore.

If you embrace it, if you are faithful to it, your truth will reward you with unimaginable freedom and intimacy with yourself and others. You won't land in world made to order; some people in your life may not like what you write. But those who remain will be allies, people who breathe deeply and listen. It will feel good to be seen completely and loved as you are. As Natalie Goldberg said after her friend found and read a piece of work-in-progress that she had left out from the day's writing, "I feel good because I don't care that she sees how I really am. I'm glad. I want someone to know me."
—John Lee, from Writing from the Body, excerpted from Art as a Way of Life.
from today's newsletter from HERON DANCE a beautiful, inspiring site...

ALL CLEAR !!!!

yesterday's mammogram and ultrasound were clear !!!!! hooray !
It was scary waiting for the dr. to read the tests......thankfully i go to a breast center where they do the test and the dr reads it on the spot.....
today was the first time i worked in the kitchen with a rubber glove..... i hated it....!!!!

The New Challenge

30 miles down the freeway
windows open
wind blowing freely through the car
arm bare feeling the wind
trying to really feel it as i head
to the lymphedema specialist
to be fitted for a sleeve
a sleeve they say
forever
all day every day
tight
hot
in the way
uncomfortable
putting it on alone is a nightmare
rubber gloves with their little bumps
help to smooth it up to my shoulder
new rules and routine
come with it
wash it every night
cream on the arm
to prevent skin breakdown
which is possible and ugly
no lifting anything over 10 pounds
wear gloves in the yard, the kitchen
anywhere where a scratch or cut is possible
me who has everything in sight
all over me
and despises wearing gloves
i want to feel the dirt, the plants
the sand
the trees
the water
the wind
i wear it for a week
to see if the compression
in the wrist is enough
to take the hand and finger swelling down
if not
then we add the glove which is awful
and more limiting
pray with me that it doesn't come to that
the ride home was frustrating
confined covered uncomfortable
all that for over $100 which medicare won't cover....
coming into the house hot and tired
my first instinct is to rip it off
and i started to
and then remembered
i can't
or
shouldn't
if i want to take care of myself....
one more mountain to climb
with legs that are weak and weary.......

JOY TO THE WORLD

everyone was here sunday - before vacations start and everyone heads for different parts of the country....Of course the wading pool was the big hit as was Nana's wig.............the ripe cherry tomatoes provided Liam his own private seat where he consumed vast amounts of them...... I iam so grateful for this kind of joy to help me forget my body that isn't working really well yet......

HAPPY BIRTHDAY TIM !!!

it's hard to believe I have a 40 yr old....!!!! I am so glad he was born and celebrate all the blessings he brings to the earth as a husband, dad, son, brother, friend, artist, storyteller,writer,photgrapher and much more.... his gentle soul has brought me nothing but joy all 40 years..... i am utterly grateful every day for his presence in my life....
HOORAY FOR TIM ...!!!

DOWN DAY

i have felt sick all day - not sure why...nauseous and shaky and weak.....it's very hard because i expect to feel better each day and when i don't i get very down...going with the flow isn't one of my strong suits......i even cut my lymphedema apt short as i was so nauseous....

FATIGUE

I've had a rough couple of days fighting fatigue probably due to my overdoing it in general.
I drove to S.F. sunday - the longest drive so far and yesterday took my first dance lesson in 9 months !!!! The 45 minutes was very difficult as the Polymyalgia is acting up and the cancer prevention medicine for the next 5 years causes joint pain and the broken shoulder pain is still pretty strong...so i've been sleeping 11-12 hours and still don't want to get up..... I'm not sure how long the fatigue from radiation lasts.....i hope its' over soon....
the yard and the house are very cluttered with things to sort and put away and i just can't get to it.....
and the heat doesn't help...
so today is my day to whine......and not feel good all over....

Lymphedema

I'm going for treatment twice a week, wearing a makeshift compression garment till i get fitted with a "real" one and am supposed to be doing exercises every day... 6 different exercises 15x each to clear the nodes in the neck, armpit, groin, and down the side of the body..... routine is very hard for me and so it will be difficult to get in the daily habit. Also the broken shoulder aftermath is still very painful and difficult to get to work very well. I've decided on the arm sleeve and gauntlet (looks something like these pictures - I haven't actually seen the real ones yet...) which is less expensive and bulky but needs to be worn more often.... I am really distraught thinking i need to spend the rest of my life wearing this damn thing.... and Michael Moore is so right....the health care system sucks....Medicare won't pay for these and my secondary will only pay a small percentage depending on where i buy it. I am going to see a woman in Morgan Hill who is a specialist in fitting these garments and i hear they are quite expensive....

Fun at Nana's

MORE JOY

Ben spent the day yesterday - we fingerpainted and had to get in the sink to wash off.... flooded the sand box, tried the potty to no avail... out of the blue he asked if he could wear Nana's wig so he donned that for a while...he was a joy to have around and didn't give me a moment's trouble....he even took a nap on "nana's big bed"..... I slept really late today - as my energy level is still pretty low but it was worth every second..... Am still experiencing numbness in my fingers and toes.... no one is sue if it will ever go away...i can notice the change in trying to type....it's much more of a chore....

Nana's Camp

Liam has been here camping out at Nana's to fill up a week of school vacation. We had a great time, although I must say a 6:30 a.m. rising time is not my regular schedule !!! That part was hard on the body. He spent one day visiting his uncle John for some serious sports and swimming.
We went to the museum, did art projects, read Spanish books (over my head but he does really well), hung out in the back yard with a big wheel, baseball, "volleyball"
My body is still not itself and the heat made it hard, but I loved every second of it.....
He is the sweetest, gentlest soul and brought me only joy ....
Still haven't decided on a compressions garment so wore a makeshift one that the therapist gave me....it was really hot...

I have been really sad all day missing him.....

Breathless beauty

these greeted me this morning....

another kind of sleeve

here is the other option for a sleeve - i have to make a decision for this or the compression sleeve....(see previous post)
this one looks likes such a monstrosity...it's to be worn at home night and day but not when i go out..... it just looks like it will limit my use of the arm quite a bit although they say it is not heavy....
this just sucks......

More about lymphedema

Lymphedema is the accumulation of lymphatic fluid that causes swelling in the arms and legs. __Edema occurs when venous or lymphatic vessels or both are impaired. When the impairment is so great that the lymph fluid exceeds the lymphatic transport capacity, an abnormal amount of protein fluid collects in the tissues of the extremity.__Untreated, this stagnant, protein rich fluid not only causes tissue channels to increase in size and number, but also reduces oxygen through the transport system, interferes with wound healing, and provides a culture medium for bacteria that can result in various infections. __A chronic inflammatory condition stemming from this accumulation of fluid eventually results in fibrosis (hardening) of the extremity tissues.___Medicare & Major Insurance Carriers recognize the BioCompression Sequential Circulator Lymphedema Pump as safe and effective for the treatment of lymphedema.
COMPRESSION THERAPY FOR TREATMENT OF LYMPHEDEMA, VENOUS INSUFFICIENCY AND WOUND HEALING
Although Lymphedema has always afflicted humankind, little was understood about the disease. Only recently have clinicians begun to seriously focus on it's treatment.The lymphatic system, an offshoot of the circulatory system, develops embryologically. Fluids and protein, lipids, fat soluble vitamins, and immune cells circulate within lymphatic vessels and nodes. If lymphatic drainage is impaired, edema and protein collect in soft tissues providing a natural medium for infection._Lymphedema is the swelling of body parts, most often an extremity, caused by the abnormal accumulation of lymph fluid.Lymphedema is an accumulation of lymphatic fluid that causes swelling in the arms and legs. Edema occurs when venous and/or lymphatic vessels are impaired. When the impairment is so great that the lymph fluid exceeds the lymphatic transport capacity, an abnormal amount of protein fluid collects in the tissues of the extremity. Untreated, this stagnant, protein-rich fluid not only causes tissue channels to increase in size and number, but also reduces oxygen through the transport system, interferes with wound healing and provides a culture medium for bacteria that can result in various infections.
15% of all women with breast cancer will develop lymphedema over the course of their lifetime and that lymphedema resulting from prostate cancer is on the rise.
_Lymphedema is a chronic condition and often begins with a swelling in the hands or feet. Early diagnosis and treatment improves both the prognosis and the condition. Left untreated, the limbs become more edematous and the skin hardens, losing its elasticity (fibrosis). Moreover, untreated lymphedema leads to infection and sometimes, irreversible complications.
_Compression must be applied to the limb to reduce the swelling. Surgical compression stockings or sleeves can apply compression. Manual Lymph Drainage (MLD) is performed by specially trained therapists, utilizing a gentle massaging technique in conjunction with a pumping motion. Some treatment centers use a special bandaging technique.

_

Compression sleeve

my first treatment was yesterday - i liked the practitioner and it was a gentle manipulation of the neck , shoulder, arm and hand...moving the lymphatic fluids...
there may be a Plan B for a sleeve a very different kind that is foam and quilted that i would wear 24/7 if i'm home and could take off when i'm out...i can't find a picture of it on the web - it's evidently an invention of someone local...
it's very bulky monstrosity so i have to make up my mind and get measured thursday for some kind of something.....
the thoughts of it are very disheartening, but there is no choice if i don't want this to get worse which can be very dangerous.........
damn this roller coaster ride.....it's exhausting...

LYMPHEDIVAS!

if i have to wear a sleeve that goes from mid finger to upper arm.... i might as well check these out - don't you think ???!!!

Another mountain to climb

a visit to the Lymphedema specialist to assess the condition was very traumatic for me....
they gave me reams of information to read.... risks, treatments etc...it's pretty overwhelming....
once you have this condition it appears it is for life.... there is no cure just treatment which consists of physical therapy 2x weekly for a few months to "move" the lymphatic fluids that are stuck and cause swelling because lymph nodes were removed during surgery.... then i'm to learn the exercises to do myself.
the worst part is having to wear a compression garment pretty much day and nite to keep the swelling at a minimum....
lifting, luggage, purses, grocery bags, flying any kind of gripping, etc. are among the list of "high risk" activities they gave me... - no ice - no heat.....which i've been using for the pain of the broken shoulder which some days is pretty awful.......hand must always be protected with gloves for gardening or cleaning because of the risk of infection.
I do have 2 friends who have had this for years and they manage quite well and tell me "there's all the things they tell you and then there is reality....- but the compression garment is important and i'm dreading it.....
i need to do a lot more research - treatment starts next week.....
i had a huge meltdown after the session having to face another challenge....
you can find out a lot about it online but i was overwhelmed with what site to link so you're on your own if you are interestested....
one more challenge to discourage me.......
GOOD NEWS i went to the dance party last nite and danced 4 dances !!!!!!!!!! i'm and exhausted but i did it....

JOINT PAIN

many of you know that quite a while before the cancer i was diagnosed with PMR which was causing a lot of joint pain. The rheumatologist told me that the chemo would help the condition and i would be able to cut back on the prednisone....it did seem to calm it down and i did cut back on the prednisone.
Well now that the chemo is over i am in the throes of a real PMR flare-up or suffering the side effects of Arimidex which is the 5 year regimen to prevent recurrence. Joint pain is one of the main side effects....
whichever it is, i am stiff and in pain......and do not want to up the prednisone as it has its own ugly side effects.....
tomorrow i go for an evaluation of the lymphedema......
is there any end........................?????? I'm more than ready for one....

ALL WET

Ben decided daddy needed a shower for Father's day....

UNEXPECTED "HANDICAP"

because i do so little handwriting, i hadn't noticed how difficult it is to write "nicely"with the neuropathy which is tingling and numbness in my hands - a side oeffect of chemo....
When i was trying to write a note today, it was difficult to form the letters neatly....the numbness is pretty strong in my left hand and of course that is my writing hand....
round and round goes the merry go round...
i wish i could get off.....!!!!

A LITTLE EACH DAY

My energy is a little better each day.... i see to be able to remain upright for longer stretches...the new medications seem to be ok....so far no noticeable side effects except for the joint pain from the cancer prevention rx.... i already have joint pain so it's just more of the same....
my breast is a mess with blisters and peeling....High 90's temperatures makes for even more discomfort.....
my shoulder isn't healing as quickly as i'd like -still can't do much with that arm....

IT'S NOT OVER TILL IT'S OVER!

just when i thought i'd have some time for me, i now have 2x weekly appts set up with a lymphedema specialist to treat this before it gets any worse.
one of the difficulties is that the arm that has the broken shoulder and is in pain anyway now has this added issue.....
I've been experiencing a lot of pain in the shoulder that is healing, so fo course am now worried about the treatment for the lymphedema which involves some exercises.
there is no cure for this condition and it can mean " a commitment to a modified life style"
However it can be temporary so pray with me that this is my situation....

PILLS, PILLS AND MORE PILLS

today i start 3 new medications which raises my anxiety level immensely
1 is a 5 yr regimen of an inhibitor to prevent cancer recurrence
1 is to calm the hot flashes which is one of the side effects
1 is a new rx for panic attacks
I am calmly saying "these are only little pills meant to heal your body and they will work for you not against you" but it is hard....
I hate taking pills - especially new ones....
wish with me good luck and healing with them.....
i am extremely tired from the weekend - sat nite event and a baby shower yesterday....so i've rested most of the day....
the breast burn is beginning to calm down and heal.......
i want to go out and work in the yard and go back to the Y program....but don't have the energy

A NITE OUT....

thanks to my friends nicolas and darius i had my first big nite out at the AIDS COALITION blk tie gala last nite. i rested most of the day and then donned my wig for its debut at any kind of event.
I sat most of the nite and had a few shaky moments but was well taken care of....
i even danced one rumba....
i'm extra tired today but am glad that i overcame my anxiety and went out.
i hope the anxiety gets to a point that i can go out by myself soon.....

A thought for today....

This was posted on Heron Dance - one of my favorite web sites. They have a wonderful free newsletter that comes in your email with beautiful art and poetry.


If someone says, "To be enlightened you must
fast and pray all night"
Have dinner and go to bed.
If you see a sign, "This way to salvation,"
run the other way.
If somone says, "This book is the truth,
you can buy it from me."
Take your money and buy grapes and roses.
If someone says, "He's talking tonight,
thousands will be saved."Go for a walk...listen to the birds
and watch the clouds, and leave
your backpack, your Bible and your Buddha
under a tree and hope
they will be gone when you return.
Where we are going you can't carry anything,
not even your name.
If there is logic in the above,
be afraid, it's a lie.

But if you feel something in your chest
as beautiful as the grass beneath your feet,
be grateful...open your arms
and forget everything
you ever thought you knew.

John Sqaudra excerpted from
This Ecstasy

A FREE DAY !

no doctors, no machines, no poking or probing.....
it feels really strange - still hard to believe....
i think i will treat myself to a manicure and pedicure - the least i can do to celebrate !!!!!
Here's to pink toes !!!!

ONCOLOGY FOLLOW UP

Today was the follow up visit with the oncologist to learn about the next steps..... a 5 year regimen of a cancer preventative drug and a drug to help with the hot flashes which are one of the side effects of the prevention drug.
There are other side effects which i hope i can miss.....
I have to see a lymphedema specialist as i am showing signs of swelling in my hand and arm.
It will take about a month for my blistered,burned breast to heal and then it's off to mammograms and ultrasounds to be sure all is well....
my energy is growing a little bit each day....i am grateful for each little bit...i think the minute and a half swing dance gave my body and soul a much needed boost.....
i am still resting good part of the day even tho i would like to be out and about "doing" things...
i feel like i needed to have a ritual or celebration for the end of this treatment phase....but alas, there was a shortage of people and places to celebrate.....
in one crazy sense there is quite a let down and i'm feeling it.....
the oncologist was full of admiration and hoorays for me as she said that lots of her patients don't make it through the treatment..they give up.....and I didn't !!!!!!!!!!!!HOORAY FOR ME

HOORAY FOR ME !

I DID IT !!!!!!
last radiation treatment this morning.....
the letdown is exhausting and it really hasn't sunk in yet.....

SATURDAY SOUL FOOD

These are a few things that people said that lifted my soul on
Saturday...........

it's so good to see you here....
I love the hat
you are the most beautiful bald woman i've ever seen
you don't need the hat... you look great without it
thank you for all the light and joy you bring here
we've mised you so much
you look amazingyou are beautiful
etc...etc...

I felt good enough on Sat to get "dressed up" and go to the dance studio to watch my friends dance at the Medal Ball.
During one of the breaks the judge asked me if a wanted to "do a little swing"and I DID IT !!!!! not for long but just enough to know that my body remembers how to dance....
she said "you know you're a great dancer !!!"
It was filmed !!! and is on YouTube - but you have to watch abut 5 minutes of other people as it's the last clip
It was a wonderful afternoon although sad as i wasn't dancing.....but just watching lightened my heart....

NANA'S WIGS

Nana's wigs provided for much entertainment on Sun as Ben an Ronan ran around the house and yard laughing loudly....they also checked themselves out in every mirror in the house.Of course without clothes!!!! their favorite way of being in the world is "i want to be a naked boy..."

STRANGE BODIES

what strange bodies we have..... i have no way of knowing from one day to the next what mine will do....
yesterday wa a nightmare -a seemingly all day panic attack- spent most of the day in bed restless, crying, shaking and scared......
today i actually got "dressed up" meaning earrings, bracelets and a hat and visited some friends at the dance studio..... It was nice to collect hugs and know I've been missed.
it is very hard not to be able to trust my body as it is hard to make any plans.....
hopefully with the radiation treatments almost over, it will be more secure in its behavior....
I hate the endless panic attacks which come out of no where for no reason.....

SURPRISE

This cactus hasn't bloomed for over 15 years....it belonged to my mother who had it blooming all the time.... it has just sat in the back yard all this time and i wasn't even paying attention to the fact that it had a blossom on it.... to my surprise this beauty greeted me this morning and i noticed a half a dozen more buds....i really believe it is a miracle and hope that it is a sign that the miracle of having my life back is on its way... my breast is raw, blistered and very sore so maybe the beauty of this blossom will ease the pain.....

REST

This was on the zenamoon blog today and I simply stole it.....

Stopping, calming, and resting are preconditions for healing. When animals in the forest are wounded they find a place to lie down and rest completely for many days . . . They just rest and get the healing they need.

~Thich Nhat Hanh

PURE JOY

EMPTY SATURDAY

Empty, disconnected
A long, lonely day
Phone didn’t ring
Not an email from even 1 person
And no snail mail…..
The back yard was full of birds
Their songs sounded mournful
But I know it was my own mourning I was hearing
The squirrels played And I watched
wishing I was playing
The sun was warm – my heart cold
Breeze soft – soul hard
Pruning to be done But no energy
Planting to be done
But body not strong enough
I was glad when night came
And the empty, disconnected
Long, lonely day
Was at an end…..

ONE TINY PLANT

a month ago i bought 6 tomato plants with the idea to plant one each day - surely i could do that....but still they sit in their little pots on the patio and i have had no energy to dig the holes to plant them.
this morning i "made" myself dig 1 hole.... so i now have 1 lone tomato planted.....
then i had to "make" myself quit as i wanted to manically dig all the holes and finish the planting....
tomorrow is another day....
now i'm going to lay down for a while with the hope that i can do a few more chores later today....
i have a 3 day break from radiation with the holiday so hopefully some of the soreness will calm down....
i wish i had the stregth to go somewhere this long weekend......like a trip to see my little boys....

BURNED, RAW BREAST

Here's the Story of the Day:
Enough Worry

There are things I refuse to show you, my mirror told me. You've got enough to worry about already.

from one of my favorite sites

NOTHING.....

i decided to do nothing but my treatment today and spent the rest of the day in bed.....my breast is pretty burned and sore, so it's hard to get comfortable, but i did sleep some.
yesterday after my treatment, I watered all the plants in the back yard and patio, went to the Y, counseling appt., grocery store and my body and psyche had a meltdown last nite.... i hardly got thru watching Dancing with the Stars....
I guess it was too much.... plus my tired poem got to me and i just cried for a long time....
i find it hard to cry very much and i actually think it would do me a lot of good....i wish i could spend a whole day just crying.....instead of my body holding all this.....
i'm hoping the rest today will give me some energy tomorrow.....
blessings and thank you for all your comments....they really help heal my aching spirit.....

TIRED

i'm tired
of tired
tired of weak and wobbly
tired of hot flashes
that make me nauseous
tired of stomach pain
with no apparent reason
tired of burned and sore breast
tingling fingers
tired of no hair
tired of the daily trip
to the grinding machine
that radiates me
that still makes me shake
tired of fear
and anxiety
tired of alone
tired of not being able to do
the simplest chore
tired waiting for a good day
just freaking tired of it all.......

HOLDING ON

yesterday was a lousy day - felt really sick all day - cancelled a lunch date and spent most of the day in bed.....
had gone to the Y on wed and did a little "workout"... took it real easy so don't know if it was that or just another rotten day...don't feel much better this morning.... queasy, shaky, off balance....i wish i knew why...
i am so weary of feeling lousy.....will a good day ever come?
will try to have lunch with friends today....

DAMN MACHINES

i did go back to the ymca cancer recovery program on mon. and the damn machines..... did less on each machine but still got really worn out and didn't feel good all evening....
i will go a few more times before i decide if it is the right thing for me to be doing right now...i will try again tomorrow....and will try to take it easy.... those machines are really intimidating....
but i did do 15 lbs with the leg press !!!

1/2

today marks 1/2 thru the radiation treatments.........!!!!!!!!!!!!!!!!!
HOORAY FOR ME ...!

MOTHER'S DAY

such joy for mother's day...... all my boys,big and little, christa and her parents, peter and judy, deirdre and christine mothered me all day .......i am so blessed to have such loving, compassionate and wondrous people in my life......they bring me nothing but PURE JOY always....
may we all take a moment to give thanks to all those special people - women and men who have mothered us to who we are.....

HAPPY BIRTHDAY TO ME !

Friday my friends took me to lunch and showered me with love and presents and then Christopher brought me dinner and his company so i wouldn't have to be alone....
friends sent flowers, brought flowers, cards and lots of love.
my heart was full knowing i am truly loved.....
my body on the other hand is still a struggle so i did spend the afternoon in bed....
and today (sat) i feel really sick and have a lot of back and leg pain....
so spent even more time in bed....
hoping to have some strength tomorrow for my kids' visit - all my boys - Christa and Deirdre
and Christa's folks - peter and judy visiting from MN and christine.....

NOT TODAY

i called and told the Y i wouldn't be there today....my body is just screaming NO! and i don't think it smart to push and push it....
my daily treatments are still wearing me out and i a having horrific hot flashes so i just can't do it today....
i will try walking around the block when it cools off this evening...but right now i need to rest....
i planted and watered a a few things on the patio this morning and that seems to be all i can do right now....
i am holding the "BOTH/AND" of feeling badly about myself for not going today and good about listening to my body....
why is this all so difficult.....

HELL

Temperature 93 degrees
hot flashes on top of that.....
then off to the air conditioned Y for exercise class.....
every bone in my body didn't want to go....but i did
rode the bike for 15 minutes - did 12 leg presses and 12 leg lifts and nearly collapsed......
"they" say listen to your body - it will never lie
the dr and the trainers say exercise and you will feel much better and get your strength back....
by the end of the hour i was shaking all over and in a complete meltdown crying.....
there is a a/2 hour relaxation meditation at the end which i did go to but couldn't relax.......
i don't know if i can do this......it feels impossible but i will try a couple of more times before i decide if it's working....

teeter-totter

i never did like those things on the playground growing up..... up went one end while the other hit the ground real hard and then heaven forbid the person on the down side got off - i was dropped hard to the ground real hard more than once.....
it feels like that today....haven't felt good all day.... guess i overdid it yesterday.. went for my treatment, then to lunch with my friends, then to the grocery store and drug store....
today i am beat and have a lot of back and leg pain and unexplained nausea....
tried to pick up my bedroom which is such a mess, but lost energy very quickly...
so it's been a down day....
it's very discouraging not to be able to do anything around the house or yard to keep up .......

gratefulness

on this gray rainy day, i took a shower this morning without a panic attack !!!!!!
thank goddess for small things.....although actually this is HUGE.......
please may it not be the only one....

ONE MORE STEP

today was excruciating and very overwhelming but I DID IT !!!! - at least began....
the Y program is all on machines.... huge big over powering machines.... one whole room for cardio and another for strength....
everything is done on a computer for each person so the "program " is individualized....
I have never been on any kind of machine and have no strength at all so of course am at ground zero...all the machines are programmed to my "code" for me....
just getting on them is pretty intimidating so i was more than anxious .....
i only got to do 2 things today -
ride the stationery bike - a huge contraption - the first one I didn't have the strength to get it going so got to do an easier one.....I did it for 12 of the 20 minutes that they'd like.... which i thought was a miracle.
then i did a leg press machine - where you push and pull the legs to lift some kind of weights....
I did 10 lbs for the 6 times they set it for.... ! another miracle.
most of the other people are waaaaaaaaaaaay ahead of me - did more machines etc.... but i'm determined to ignore them..
it seems like a really long road - 12 weeks - 2x a week but they promise it will help me get back on my feet.....
my anxiety level was very high and i shook a lot and am sore tonite.....BUT I DID IT and am VERY PROUD of this step i took.....
my ipod helped a lot.....
it also gets me through the radiation every day.....
Thank you steve jobs !!!!! and christopher.....

WHAT HEALTH CARE COVERAGE MISSES....

misc items that go along with treatment that insurance ought to cover as essentials.....as they truly are essential....
just this week they include:

• aloe vera gel and special lanolin cream to be applied daily to ease the burns from the radiation
• special bras and camisole of cotton so as not to irritate the area
• cotton t-shirts for comfort and ease
• special non-aluminum based deodorant
  
• closed toe exercise shoes for the cancer patient exercise class recommended by the doctor to regain my strength -( i only own sandals !)
  
• socks !! (would you believe i don't own a pair !)
• summer head coverings as the winter ones are way too hot
• heating pad to relieve the back and leg pain
  
• that doesn't even include the wig that i had to get weeks ago