yo yo yo

i've moved, sorta-kinda.

i will say tho that i will keep this blog open for anything that i might consider a little 'off color'....some things you just don't share with family and friends.

capeesh?

look for me here or at:
http://thegypsyangelsings.blogspot.com

Gold's

its too hot outside
to tackle gardening
or
tanning (god forbid)
even walking, was cut short

but this morning
was Yoga!

inhale exhale
breath in and out
reaching stretching
but all the while
staying grounded
as if the feet were
planted in the earth
stay strong
its exhausting
and empowering
all at the same time

i am so loving it!
who knew?

so i joined the gym.
not that i ever plan
on getting on those
huge machines outside
our classroom:
treadmills,stairmasters,
stuff i never knew about
boflex.
hey, howz this?
bLowflex me, bub

i'll be in the next room
lieing down
with my eyes closed,
getting totally Zen

yoga

the balance
the even-ess
all alligned
right in a row

breathing
in and out
smooth-ness
flow from one
to another
it is my mind and body
of which i am aware

salutations my friend
from me to you
colorful images
come into my brain
as i shift from one
to the next
to the next, again

the movements feel
easier over time
as i explore the range
with which i can go
how far will this take me
will it last
can i make it work
to take me into the future

the tide is turning

i guess its been a couple of weeks now
the after-party from my brain tumor race,
one of my new goddess girlfriends,
someone who has taken hold of me
and won't let go
put something on my wrist that day
it was a bracelet of glass beads
with an evil eye in the center
she said this will protect me
from anything bad or evil
she squeezed me so tight
the intensity with which
she gave it to me,
i will never forget.

evidently she is a world traveler
having been from one side of the earth
to the other
and back again
her hair is short and cute as can be
i have watched her from afar
in wonderment
amazed at all she has accomplished

my point?
after she put those beads on me that day
(which i have since put on a gold chain to wear around my neck)
something *changed*
my mojo has returned
i have more energy
my yoga classes are working out great
i feel more like the old me,
or make that
the 'new' me.
there has been a profound
shift in the cosmic cycle
the tide is turning
toward the light

thank you shawn

The Race for Hope

the big race day!
the weather was glorious
breezy, sunny
not too cool
or warm
just perfect

at least 30 of ellie's peeps
ran, walked, jogged
rick pushed me in the wheelchair
decorated with colorful wire
and tinsel
zoe made the sign
that showed so proud
al made all the 'ellie's peeps'
tee shirts for ALL of us
complete with actual pictures
of Peeps in different colors.
too too cute i tell you!

the survivors got in front
they led the charge.
of those that ran,
they were gone
in a POOF!
the others walked with me
it was so inspiring
thousands of us
last count i heard was
6,000 people!
i was moved to tears.

but, as i sat in my wheelchair
looking at everyone's backs
near and far,
i was struck by the messages
people were wearing:
In Loving Memory of ....
everywhere
there were waay more people
with messages of loss,
than there was messages
of hope
and survivors

perhaps in a year or two
my name will be on
someone's back

i can wait

my peeps and me

sunday is the big race day
i have just under 30 people
running and/or walking with me
i am so flattered and blessed
by their love and devotion

becky's getting the wheelchair
alice has organized everything
from signs: ellie's peeps,
to emails to participants
to the place we will be meeting
to the party afterwards
in my honor

http://www.curebraintumors.org/

if you are interested in donating,
i would be forever in your debt.
our team name?
ellie's peeps

its supposed to be a beautiful day
i have my family
and my goddesses
to give me
everything i could ever need,
and more.

wish us luck!

friday

my house is so quiet
it will be for hours upon hours
its cold and raining outside
all my goddesses
are otherwise entertained
else i'd have something to do.

i've cleaned out my closets,
done laundry
tried to write letters
but
the words are hard to find
so here i sit
speechless and numb
waiting
just waiting

an ode to elaine (re-issued)

there sure is something satisfying about
the zen of getting bronzed
wearing the perfect tanning top
that shows a great glow
as i look up
i find the spot
in the sky
become one with the sun
smile
close my eyes
and say:
MMMMMMMMMM

i dare say its not vanity
that drives me either
to get that perfect glow
it goes much deeper than that
to the essence of
who i am
i need the warmth and comfort
that only summer can bring

there is no better feeling
in the world
its so hard to explain
no matter where you are,
be it on vacation
or right here at home
the conditions were just right
today

exercising my brain
or walking
good and strong

it was my day

...and the bad news

even tho i am on
Temodar (my chemo drug)
that was supposed
to keep my platelets
within the normal range
it is not the
silver lining
i had hoped it would be
normal range: 150,000-400,000.
yesterday i was
875,000.
its been inching up
and this is my chemo week too,
a time when it should be low

dagnabbit!

good news......

...for now.

another clear MRI!

-------------

there is a race
in Washington, DC
for brain tumor research
where there are teams
that raise money.
so far there are
30 people
who have signed up
for my team:
"Ellie's Peeps"

a friend passed
it on to me.
now i will pass
onto you!

You can check out the website
for more info
www.curebraintumors.org.

thanx!

the state of the world

what, fer pete's sake,
is wrong with the
human race?

these killings at Virginia Tech!
Rick went to Virginia Tech
Nancy too
everybody is either
a hokie, or a cavalier
around these parts
its amazing that only
1 person from the area
was killed*

korean
african american
or black or latino
even a rabbi
(in a sex sting!)
what is there about some
people
no matter what race,
ethnicity,culture
they are just inherently
EVIL?

the world is swirling with
so much excitement
around me
over the situation
we find ourselves in
a needless excuse for war
good ole boy GW
a total pussy on 9/11
(what were you thinking???)
katrina, katrina and
global warming


there is so much HATE swirling around
maybe it would be ok
if i didn't hang around
too much longer.
its really painful to watch.


* UPDATE:
at least six were from northern virginia, including the shooter himself.
damn it.

this valuable time

what we have here,
is a problem
communicating.
my heart just aches
at the emptiness
the loneliness
i feel
i don't want this valuable time
to slip away
my goddess girlfriends
can only take me so far

the anger wells up inside me
sometimes i feel like
i could just scream
or run (or hobble) away

i have lost my gift of gab
and find myself in the
most interesting situation:
telling my family what to do.
emails from coaches, teachers and neighbors
schedules, doctor appointments
just the everyday bullshit
it's my j-o-b, man
i am the one who
keeps this house running
why does my family
think that i am mad at them
when i tell them 'what to do'.
is it because i have run out of
interesting things to say?
the balance is off.
my life is so quiet
i rarely see any of them
its all become so fleeting

my son is mad at me
as soon as i bring up
school
he runs off in a huff.
dear daughter is no better
she eats like a bird
is totally overextended:
soccer, ballet, tap, and track
she looks so tired all the time
it breaks my heart

and hubby?
he's back at work
full time
he comes home and sits
in his spot
on the couch
reading the paper
every. single. day.
i am so desperate
for some conversation,
i sit and try to talk to him
but my life is so stunted
i am mute.

the days pass by
week after week
month after month
the truth is
i am happier alone.
i am my best friend
i like me!
my world is a whole lot quieter

see what i mean?

i told you so!
we had nothing to do with it either.
it happens all. the. time.

our villa number....22

an "ok" time was had by all.
it was nice to be away.
it's great to be home

we're going on an adventure!

we're off to disneyworld this weekend
for the whole week
airline tickets are ordered
the rental car is waiting
and i've got my handicapped sticker
and a wheelchair on reserve

at first,
i was dreading this trip
but the closer it gets
to becoming a reality
the more i am looking forward to it
this may be the last time
we are all together
in one place
living in the lap of luxury

rick and zoe will do rollercoasters
all day long
while zack and i will have a chance
to bond
altho he gives me grief
just about e-v-e-r-y-t-h-i-n-g,
i know there is a scared
little boy in there
that is looking forward
to driving me around
disappearing for a while
on our own little adventures

we are even going to have friends there
waiting for us
teenagers abound!
perhaps they could travel as a pack,
while leaving rick and me
to our own devices

{insert evil laugh here!}

just like cameron diaz

its cold and rainy
i have no desire to go anywhere
some days i feel great
there is bounce in my step
other days are not so good
my arse is dragging
napping is the most i can do
twice a day, in fact

hubby's big annual banquet
is saturday nite
i went shopping yesterday
with mother-in-law
i needed a dress
a wrap style in a yummy fabric
navy with polka dots
very sexy indeed
but the hat
what about the hat?

found a cute white knit one
with a brim, kinda slouchy
reminded me of cameron diaz
in a way.
it will have to do

eco-systems

outside my kitchen window
exists an entire eco-system full of life
sparrows, doves, finches
there is one with a pretty yellow head

the bushes provide their roost
for the families who reside there
a brilliant red cardinal snoops around
wifey must not be far away,
as cardinals mate-for-life
you know.

one bird feeder at each end
in the summertime we hang
the hummingbird feeder
big, bright and red
it hangs in the center
entertaining us
we all stop what we're doing
and watch
i love it when they
zzzip around

our table sits inside
right under the window
i have been spending
many hours there
sitting, watching

waiting

view from a monday

another plateau
this one may be
permanent

i fell in the woods on saturday
all alone
it was muddy, sloppy
i couldn't catch myself from falling
back, back, backwards
boom!

the good news?
i got up with relatively few issues
pretty quickly too

but i tire so easily
my intentions are honest
i start out good and strong
but end up wobbling home
bobbing and weaving
hoping no one sees me

the gaps in between

i am in limbo
hovering across time
some days feel endless
and others fly by

its the milestones we pass
that keeps us on our way
toward the end of a good
long life

kathy is having twins
jennifer is having her fourth
without these milestones
the days fly by

zack made regionals in swimming
zoe got straight A's
tho they may be minor milestones
that is all i have
today

the past 6-8 weeks...

...have been a blur.

i am limited in what i can do
driving a car is out of the question
i feel like a caged animal
pacing back and forth

my hair is just lovely
i gag everytime i look at it
scaaaary

started with my course of chemo
1 week on (double dose)
3 weeks off
i hope it goes better this time
than it did last.
i was hurling so hard
i had to put myself
out of my body
just to get thru
the first couple of nights.
then i got a new anti-nausea med
and things from there on out
seemed to be ok

but, everything tastes metallic
i can only eat
a little at a time,
then i want to hurl again.
casseroles, casseroles, casseroles
its not that i want to hurt
my goddess friends feelings,
thats the last thing i want to do
i am just sick of chicken casseroles
and lasagna
chicken and tomatoes and rice or noodles
it must be the acidity in the tomatoes
i shudder everytime i put some in my mouth.

i am grateful to each and everyone of my friends
but i am so tired of talking about *this*
everyday is different
yet always the same
my handwriting is different
(everything is a mess)
i have short term memory loss
(must write stuff down immediately)
i move slow
i have a tendancy to veer to the right
i don't feel steady on my feet
my hands are shaking terribly
(try putting on nail polish with shakey hands!)

like a marionette puppet
someone is controlling my strings
from way up high
i don't feel grounded
at all
i am all wobbly
if you didn't know,
you'd think i was drunk.
they say its the side effect of radiation
burning my brain cells

i signed up for a yoga class
with mother-in-law.
bless her heart she has been
doing yoga for 50+ years.
she is the most centered person i know.
my inner core is out of wack
i need something to make it right
i am afraid i am running out of time

happy new year

i walk without a cane
can go up and down the stairs
without holding on
even carrying stuff
like a glass of ice water!

xmas's 1,2 and 3 were all so predictable
new years eve party
lots of people and delicious food
i left at 10:30ish
long before midnight

i am bored talking about me
even more bored talking about YOU,
or your kids.

my attention span is only so long
maybe i need to travel
see things
do things
learn about other cultures
and civilizations
soak it it
get lost in their world
for a while

while escaping from mine

part deux: the little things?

its not just the moments in time
however poignant they may be
i just wish they didn't feel so trivial, so
in-consequential
in the grand scheme of things.

its the distance of years
that love depends on
the vastness of time
that tells of a great love story
the long haul across the country
where we been, and where we going
in a rented RV
the memories
we still have yet to build
do i dare

plan for the future?

cooking dinner

xmas eve i cooked my penne & sausage dinner
a favorite meal for the family with all the trappings
it was the first time since all *this* happened
i was a little shaky. i needed some supervision too
hot pots and all
but it was fun and warm and delicious, none the less
good old comfort food
we lingered.

as for the rest of the weekend?
hmm
bittersweet
collectively, it ranges from:
a big red exercise ball
[that i needed for physical therapy]
you should see how bad i am on that thing! :o)
a journal (several in fact)
and motivational books
a spa day
lotions, potions and balms
HELLO!?!
do i sense a theme here for the girl with cancer?!?


then i got a little snippy with ma-in-law
first she says her blessing over our holiday meal,
then looks to me (as usual) for *us* to say
our blessing.
well ya know what?
to the best of my knowlege,
jews don't have a blessing before a meal.
we always faked it before
this time,
i decided that i did not need to
accentuate the differences in us,
in ME.
aren't i already different enough?

but hey!
i can go up and down the stairs
without holding on to anything
certainly without a cane
and thats progress baby.
plus, i haven't fallen in a week or two

so all in all,
i'd say its been touch-n-go.
big boo hoo tears
all the way around
its a sad time
for my buddy and me.
i am just trying to take each day as it comes
enjoy the little things.

i just wish they didn't feel so trivial,
so small over time

checking in....

in some respects, i feel better
not nearly as weak as before
i can get up out of a chair
and i can climb stairs too
mostly
i couldn't do that a month ago!

i've been wearing jeans
and fancy sweaters
as opposed to sweats and sneakers

i've passed a short-term goal too:
little kitten high heel shoes
bronze and cute and pointy
ok, i did fall in the kitchen
just that one time...

but i always have the obligatory HAT
sometimes its a baseball cap,
others its my snazzy black cowboy hat
but its always there...on my head.
i don't want to scare anyone

i've done much of my holiday shopping on line
stuff is being delivered daily.
it sure has made life easier!
but the holiday cards are still not done,
how do 'new years cards' sound instead?
i have a lovely pix of my kids
along with hand-made multi piece
red stone and silver inspirational charms
as a thank you to all my
god and goddess friends
for their love and support
i am determined to get them out too!
zoe and i are assembling them--
not to be confused with the new line
i am designing for the store

but the truth is:
i have grown so weary of telling everyone
about the status of my health
over and over again
the same words
to different people
they as look at me
with big sad eyes.
STOP feeling sorry for me
pitying me
worrying about me,
and my kids

lets talk about something else!
Ok?

Holiday 2006

I feel all squiggly inside
a flurry of emotions and feelings
to add to my stress level
now I have xmas and chanukah gifts
and holiday cards with pix of the kids
just to name a few

don’t tell me I shouldn’t worry
or fret
cuz no matter what you say,
I will.
I want to give back
to those that gave so much to me
to recognize and acknowlege
my family, my extended family,
my girlfriends who are like goddesses
the gift you all have given me
the love and support I feel from YOU

I’ve got various therapies scheduled all week
speech, occupational, and physical
I don’t want to go anywhere
do anything
no parties, or therapies, no stores or shopping
or even on a walk
I just want to stay inside and hide
ALONE

I’ve changed, I think
altho I do still think of myself
as one who ‘boldy goes’
hence my (ahem) falling,
I no longer feel fearless
I am worried to death
in spite of what everyone says.
Who wouldn’t be?

I am getting better physically
I’ve dropped the steroids
weaning me down to nearly nothing
only 1.5mg/day
from 16mg/day!
I am relieved, but dubious
I hope I will be ok, and it won’t be too hard

school concerts: band and choir
swim meets, parties, therapies,
dentist appointments for the kids,
lifeguard classes for zack,
cancer dinners with other teens for them both
go, go, go
I just want to stay home and hide
I have become accustomed to having brain cancer
it no longer feels new.

In fact, its starting to get reeeal old.

the real reality

its been a tough week.
faced with my own mortality
the permanence of the situation
that i will never, ever
be the same
physically, emotionally, cognitively or
spiritually

we set up trusts for the kids
and for ourselves
who gets my ring,
and stuff like that.
sorry zack

i saw a chart this week that had survival rates
for glioblastomas (GBMs)and other lesser tumors.
30% chance i'll survive 1yr.
[chaa!! i don't think so! snap!]
it goes from 9% for 2yrs,
down to 2% for 10yrs.
as opposed to lesser tumors:
44% for 10yr survival

so, of course we all say
hey!
someone has got to be that 2%
why not me?
look at all the love
feel all the love
i am strong
i am empowered
i have a collective of women
all my goddesses
to support me and protect me
keep me going
to weather the storm

but, the truth is:
we really don't know
do we?
how rocky and bumpy
will it be?
sooner? later?
fast? slow?
hospice?

it makes me so mad that
i know its inevitable
and soon, too.
you can say
that the same holds true for you.
you could be hit by a bus tomorrow,
or struck by lightning
when your time is up,
you are done.

well i'm not done yet.

the rest of my life

from here on out
from this point forward
i shall try to LIVE my life as best as i can
make the commitment to being well
eating right, consuming all my minerals and supplements
be all that i can be, for as long as i can
as long as it takes
(2022)

yet i find myself
impatient
unable to understand or convey
how i feel
by all the attention, the accolades, the words of praise,
and all the worried faces
the words escape me
even my poetry has waned

does this mean I don’t have the words
inside me
to understand just
what is next?

Or have I yet to understand the bigger picture,
the here-on-out
what awaits me in the
distant,
and not too distant future?
i wish i could see that far....

my radiation team

i'm gonna miss those guys. i brought them chocolate Kisses yesterday, with a note of thanks.

everyone else i sat in the waiting room with, said how they never wanted to see them again.

i, on the otherhand, felt like they were my safety net. as long as they were zapping my brain, i knew *IT* wouldn't come back. now, i just have to wait and see. could be months, could be years....

i am in a hold-mode till mid january when i get another MRI. that will give us a better indication of my status....then more follow-up MRIs several times a year....unless i start acting 'different'.

the chemo will continue indefinitely.


-------------
sad news: a permanent fixture and fellow old town alexandria merchant (a fun xmas store), that i worked around the corner from for the past +/-20yrs....died this past week. guess from what? brain cancer. she had grandkids tho....lucky her....

were it not for my girlfriends, i shudder to think how miserable i would be....they really lift my spirits! the emails, the calls, the dinners, the feeling of LOVE i get. i actually went for days without crying. it felt good. now, not so good. i feel scared and vulnerable....waiting for the other shoe to drop.

why oh why does it have to be the fastest growing brain tumor....grade 4 (the highest)...not 1, 2 or 3. oh no, that would be too comfortable....give me some breathing room....


argh!

OUR bracelets arrived!

it was the most amazing experience of my life!

they came marching down the street....like a parade....all wearing the "believe in miracles" bracelets...carrying balloons....all 41 of them! faces i had not seen. faces of those from long ago. it was not a matter of who WAS there, it was a matter of who was NOT there. i was blown away. we ARE all in this together! the solidarity i felt was humbling. the bracelets are anchors. anchors, holding me here on earth.

the balloons? they went to heaven without me!

my friend alice, says that the legacy i leave, lies not in a piece of jewelry, but in the long line of people i have touched in my life. she was the one who coordinated the bracelets (evidently there were 51 ordered! can you say WOW?)so she had the opportunity to speak with so many. she says my strength, my courage, my humor, my gratitude, my sheer will, with happiness and LOVE are my LEGACY. that it already exists...

--------------


now if i could only do something about this long road ahead of me, i would be a happy woman. the doctor says the muscle mass will not return on its own. its gonna take months and months of hard work....use it or lose it. i am having trouble getting myself into the car, up the stairs, moving in bed. i keep falling.

losing is NOT an option.

revisited 22

22


its been following me all. my. life.

every time i look at the clock
for example
its 22 after the hour
which happens to be my birthdate
but consistantly
day after day, week after week
year after year

every date
every receipt
every ticket, coat check or otherwise
barefootgirl22
and 'the' birthday

oh, and lets not forget the date I was admitted to the hospital
September 22

today, all day
every time i looked at the clock
it was 22 after the hour
and just now
the page in a book about
Goddesses
her name is Epona
i liked her right away
she is a Celtic healing goddess
who is celebrated with her own festival in Rome
wouldn't you know
loves all things kids and animals
miss ellie, miss ellie! you're home, you're home!

well, it made me jump when i saw the number on the page

a 22!
with an
E??
for ellen??

and Ezila
a Haitian goddess of love,
some voodoo for yoo-oo
she cries for the *shortness of life*
me too, I cry everyday.
still.
and dancing, she loves to dance
in my head, i hear that black chick
telling me in that club in NYC:
"you sure dance good for a white girl!"

22zz22zz22zz22zz22zz22
zackzoezackzoezackzoe
please tell me how i knew?
it tick tocks
back and forth
in its comfortable state
its no wonder
i got me some rhythm

its freaky
or maybe its not
this rhythm of ME
i feel like i am being sucked into the vortex
the culmination of ME,
is it?

i've made the right choices
just chugging along
i am blessed, yes indeed
just when i needed it the most
is it all preordained, the dates been set?
When will the tick tocking stop?

A 22 you know it will be
but will it be
the minute

the date

the year?

2022

mmm, that sounds good. I'll take it.

radiation: it IS a cumlative total

whew.

they were right, i should have believed them. the radiation IS knocking me down. i can't even lift myself out of a chair. i use a cane. i am winded--constantly! i fall regularly, dagg-nabbit.

but the good news? i am in the homestretch.....and my hair appears to have fallen out nicely. i have a reeeally high forehead, with some thinning on top, but thats about it (for now.) the hats are working out great.

hey, at least i look good!! small consolation, i know....

3 days this week of targeted radiation (focus on the remains of the tumor and ZZZAP!!!!!)
3 days next week. 2 days the following week.

then i. am. done.

whoo hoo!
then the fun stuff begins.
like rehabilitation

Silver Linings

as grammy does not dust,
its ironic that its the only thing i do
(and windex as well)
she comes every week for bathrooms and such
a breath of fresh air
an intense comfort for me
like the silver lining
in the NORMAL range in platelets
whouldn't you know?
its the chemo, its the chemo
it wrecks havoc on some
fortunately, not me.

it works like a clock
all falling into place
the rhythmic back and forth
its on sync
i have to have
FAITH
that things will work out
as best as they can
Mother Nature has given me a gift its true
and instinct so real
loving and kind
i've got proof!

my left brain damage
the rightside loudly chugging along
CREATIVE
its says, calling out to me
so whats the rush to get it
DONE?

its clippings i cut
and designs i design
looking for a way to express who i am
the rush that seems to overtake me
in my quest to break free
i am dubious at best
cautious at worst
i can visualize my display
at the store
does that count?
do i see it from heaven
or in person, right up close?

do i really intend that
a symbol, a talisman, a legacy,
a composite of
ME
as my new goal?
my mission seems cloudy
so its hurry up and
DIE,
or is it?

i heard heaven calling me the other nite
it scared me like crazy
so i just said
NO!

the drive is the difference
with reconnections with
MORE old friends from the past
countless others coming back
from out of the blue
has humbled me greatly
to hear their words of praise:
"you've made a huge impact on my life,
and i wear it with pride!"
i've inspired them greatly
thinking of me
e-v-e-r-y-d-a-y
come on admit, you know its true
i've made an impression in each of your lives
an imprint
an essence of who i am
i'm likeable
i'm lovable
and i care about YOU
feel all MY love
as i send it to YOU!


--------------

Dr D today gave me a big old squeeze, and told me what a trouper i am. how proud he is of me! imagine that!?

Decadron

today is NOT a good day

it would seem that the
steriods i am on
have had an interesting effect
on my brain

do the goods outweigh
the bads?

we halved my steriods weeks ago
because little old me
was not doing well
i started falling more
dr asked yesterday
an aha moment indeed
quartered them on sunday
and now i am
even weaker and shakier than before

my brain is swelling from the
radiation
yet the steroids are not doing their job
completely
or
are they?

do i just need to ride the wave for
three more weeks
and succumb to the fatigue,
moon face, and swollen ankles
tremors, shaking, weakness
i feel
or is it brain damage
i have suffered instead
and only NOW just rearing its
head

don't worry
we see doctor on thursday

i have not lost sight of my mission

wish me luck!

time for a nap.

sunday

we had brunch here today
father-in-law and wife
who live far away
brought all the fixins for homemade chili
with hot crusty bread and yummy salad

it was nice not to go OUT
OUT is hard to do
i keep getting cards of encouragement
from them all the time
i had no idea that they cared
as much as they do
it boggles my mind


sister-in-law
who lives far, far away
POPPED in
to surprise me too!
i shared my poems with her
she's an English teacher, you know
she liked my use of prepositions
it was the BEST treat ever

i am in love with being loved.

who knew?


------------


oh, and by the way: i did cry last nite. and today too. but they were both GOOD cries....if there is such a thing.

so technically, the daily record holds.

today

i did not cry.

its the first time


i am half-way there
3 out of 6 weeks in,
with the hardest part
STARING
at me in the face

wish me luck

xoxo,
baldina rapidus

my mark

its so prophetic
this chance of mine
to leave
my mark
with a charm, a talisman
a bauble
a badge if you will
my life long quest
to design and wear
that perfect little thing
that looks so pretty
yet makes some noise
it gives back so much more
something that makes you smile
a chance at fame
perhaps
thats all i ask
i am in a race against time

who will win?

Synchronicity

click, click, click
everything just
falling
into
place

over the years and years
its always just
click, click, clicked
our full moons
our rainbows
always looking up in the sky
towards that unknown thing
on up ahead
not so far in the distance
but just out of reach
it has not swung its last rep
nor slowed down at least
its just another
click, click, click

don't worry too much
i am not done yet

sylvia

if you just can't show me
tell me
demonstrate
make me feel
in a place deep inside
that you love me
instead of the chill i feel from you
i must have made it my mission
to have everyone else love me instead
because evidently they do
i feel loved

a mother's love comes from within
a knowing place inside
the maternal instinct
the feelings so real
an image so vivid
the moment my son was born
a collective of women
pushing me from behind
eons and eons
of generations long ago
giving me the insight
into how its done
its in ALL women
the goddess in us all
an instinct so real
how could it be missing in YOU?

inspired

i am inspired!
i have been pouring over jewelry books
creating
designing a logo
totally racing against time
"Gray Matters" for brain cancer research
my legacy
my reputation
my contribution
all in an elegant store
that i helped create
where i have given of myself
for nearly 20 years
where people will and DO,
(much to my amazement)
CARE
i inspire them!
what an amazing concept

i feel strong
empowered
even tho i am losing my hair
in clumps
and weaker every day
i need a cane.
i fell again
on my face this time.
its the steroids they tell me
i am being weaned off them
s-l-o-w-l-y
why does it reduce the swelling in my brain
but not the moon on my face
or the width of my ankles
can you say swollen?

some days are good
some are bad
i cry every. single. day.
many times in fact
what a cruel
death sentence
failure is NOT an option
dear daughter must get thru high school

as things evolve
they shift and change along the way
i am enjoying this time so much
with my husband
what a team we are
people have always envied us
what we share
i will take whatever life gives me
to spend eternity with him
we are going to keep my ashes in a box
and combine them
scatter them together
in our favorite spot

bulk rate?

50++!?

enough for a bulk rate
bracelets: "believe in miracles"
they say
gunmetal gray leather
with a nice metal toggle clasp
will they be
we will ALL wear them
unified
together

"Gray Matters" a whole lot to a lot of people.
a chance to do some good
a foundation in my honor
they are counting on me.
if anyone can do this
is MUST be me

it is my mission

please


----------

today norma, my "nail tech" who has been a wonderful spiritual connection for me....(heck, she holds my hands in hers) GAVE me her services for FREE....(cuz i asked for a discount...muy expensivo) she said it was the right thing to do. pay it forward. that THIS was her ministry....this is where she helps, where she makes me feel good. we cried like crazy. it was the most amazing experience thus far....


send some loving thoughts my way.
thanx

failure is NOT an option

failure is not an option.

i need 6-8 yrs minimum....preferably more

i am NOT in this to lose.

soooo, i had a brainstorm!
(har har!)

i have been in the jewelry business for nearly 20 yrs. me and liz. like sisters.

we (ALL the girls and i) have been talking about some kind of "ya-ya" sisterhood bracelets for all of us....something that we can wear that gives us solidarity

why not design and create something that goes to brain tumor research in MY HONOR?

its given me hope and inspiration

something to look forward to. charms that say:

no day but today

Gray Matters (in the shape of a twisted ribbon)

there's no place like HOPE

courage, strength, bravery

et al
....and then of course, after my demise, the obligitory: *E* Memorial Fund.....

we could sell them at the store!

sheer genius!


but can i pull it off....?

i asked THE question

"how much longer?"

3-4yrs.

she said to me, you are one tough cookie. you've had your share of knocks. if anyone can beat it, it will be YOU, and if you want the truth, ask your oncologist....


WHOA.


deardaughter: 15-16yrs old?!?!
how is that possible? NOT thru high school? what do you mean?
the ramifications are overwhelming.

it's so much like that TV show that deardaughter and i used to watch. Providence. the mom. she was dead too.

i can barely breathe.


ooow! want some good news?
i'll be in a coma
easy choice!

yesterday

yesterday was a pretty good day
no treatments
no radiation
no chemo
AND
we halved my steroids
that has made a significant difference

i had lots of visitors
it was a nice sunny day
the kids even set up our
Spider Graveyard
extra spooooky this year
for our annual neighborhood Halloween parade

today
i begin again anew
round two

good question

why couldn't it be in my breasts,
or liver or pancreas
(the worst you know)
why oh why
does it have to be in my brain
its the only
organ
unit
that makes me think

people are looking at me weird
i'm doin dumb stuff

moon face

4 out of 30 radiation treatments under my belt
they get progressively worse over time
a cumlative total
zapped into my brain
they make me feel really weird
like jolts into my head
and it will make me lose my hair
i can already feel where it burns


yet, i am so bouyed by the love i feel. for someone who never got it on the front end, i sure ended up with it on the back end. i feel so fortunate. i have everything in place, my home is my sanctuary. the colors, the warmth. here, i feel safe. protected. the other day my friend said i made her day, by doing so good! my doctor asked me for a hug today. we are all in this together!!

.....and i must THANK my dr. mcdreamy (grey's anatomy reference for MY neuro-surgeon) for leaving my hair intact. he was good, and vain. he understood. i remember his nice white teeth.
costa rican gentleman. bless him, bless him....

hubby and i are falling in love all over again.
we ARE joined at the hip. we ARE a great team. i will take what i can get from him in a heartbeat. we laff a lot. we ARE a love story in progress....

i cry a lot
tears of joy and blessings. tears of fears.
i must be ready
i must make some important decisions:
like those that hubby must face
how incapacitated i will accept
it sucks.
i'll never be OLD
i am the ALWAYS the youngest
girl in the doctor's waiting room

but will i ever be the same?
my short-term goal is just to dance.
the end-all, be-all, of ALL that is ME.
it is gonna be hard work
cuz i am impaired
NO muscle mass at all
just skin and bones
and slow, slow, slow

its an uphill climb
toward
what?

a bittersweet surprise

yesterday i had my final fitting
for my plastic mesh mask
they are making all the final marks on it
it will hold my head in place
clamped down
it took what seemed like
forever

but then,
they offered me an opportunity
to get started with my
treatments
right away
was i interested?
it would make it a long day,
but we could get started
NOW
then the chemo pills last nite
to top it off

i jumped
bring it on
lets get this party started!

i was most anxious
the chemo drug was the unknown
but i made it thru the nite
without hurling
the first nite is supposed to be the worst
i feel extremely funky today
headache, sore thoat, shakey
but otherwise OK
(and s-l-o-w)

10:45 daily is my radiation
for six weeks, five days a week.
i will lose my hair in big old splotches
on both sides of my head.
how lovely
good thing i look good in hats

a plateau

it looks like a may have reached a plateau
i am only
so much better
i fell again yesterday
crumbled, in fact

my right side is shaking like a leaf
but my brain capacity
is kicking ASS!
i feel mentally
strong

i can't even begin to think about
recovery
while i have my chemo and radiation
to look forward to
like hell
months of hell
there is a chance i could be further disabled
by zapping my brain

THEN

i can recover
but will i ever be the same
i am incapicatated
i move S-L-O-W
will i dance again
that is my goal for now
just to dance.....

it is gonna be tough
i will have to work hard
i am ready for the fight


----



darling daughter had a meltdown the other nite
she cried so hard
i tried to point out to her that things were
as good as they can be
i am young
i am strong
WE are great
WE are a strong family unit
WE have the love to carry us thru

what i held my tongue about
was the fact that i could be
dead
in a coma
MORE incapacitated even

i figured she didn't need
to hear that....

she woke yesterday
feeling much better.
i am glad

i am lucky

i'm so restless
i want to get this show on the road
yesterday was a good day,
today, maybe not so.

i feel funky
on my right side
all up and down
its unsettling
un-nerving

i am starting to receive visitors
they are coming in droves
i am so lucky
to have such love and devotion in my life
i feel the love, i really do
they cry for me
i cry with them

i am scared
i wonder what the chemo and radiation will be like
will it leave me permantly scarred
will i be different?

then what?
will it come back,
badder and worse than ever
i am making arrangements
i must be ready for anything

the reason

there is a reason
i have been plagued
with health problems
all my life

*THIS*

i know how that feels
nothing surprises me
it made me strong
tough
i am a fighter
scrappy even
i am ready
to fight the fight
bring it on

the calm before the storm

i have brain cancer
glioblastoma
aggressive, fast growing
"made bad" is an understatement

at least i am prepared for this
a lifetime of medical woes has
left me strong
determined
to survive
to live life
to take nothing for granted
ever again

i am getting stronger everyday
altho i did fall yesterday
an unfortunate setback
that puts everything in perspective
i am not as tough as i think i am
but i am not as weak either
somewhere in-between
i probably should be walking with a cane
but relying on that will make me
soft

i got fitted for my mask for radiation yesterday
something to hold my head still while they
zap my brain
i will lose my hair in patches
how lovely
i will also take a chemo pill
which SHOULD help with my
blood disorder too
those shots were just awful
i will never miss them
at all
i see my blood dr today
he will prescribe the pill
that will hopefully
keep this from recurring
and with six weeks of radiation
five days a week
i will live
a life
waiting for it to reappear
once again
cuz oh, it will.

the thought of dieing
after all this
makes me so mad
i could scream
but who would hear me
a voice
far off in the distance

i feel the love
i know i do
but unworthy is an understatement
like i am conning everyone
they should only know the truth
they would be ashamed
at their love and devotion
but yet
they know me
they know the REAL me
they see inside my soul

so this is the calm before the storm
next week my treatments start
i will be fatigued and tired
cranky
sad
depressed

my darling husband
has taken control
he has risen to the occasion
for all that he has missed up until now
he has stepped up to the plate
taken a leave of absence
doing the hard job
being the care giver
gladly
openly
with love and devotion
we are a good team
he and i
i value and appreciate him
more everyday

now if i could just do
something
anything
sexual with him
my life would be full indeed

i had brain surgery

my world fell apart
everyone said i was acting so weird
i kept crying a lot
so so so much

faye suggested last friday
that i get my tail in there
be proactive
take the bull by the horns

the cat scan showed that it had in fact grown
i have staples in my head
multiple glioma
the most aggressive,
but also the most treatable

dr mcdreamy did my surgery
i sat in there for nearly a week
now they have me at a hospital for rehab,
fortunately close to home to home
(as opposed the one which was far)
i start my treatments radiation, chemo
at yet another hospital
hopefully i will be out of here too
and can begin the healing process
at home

i have a team working with me
my friends and neighbors have all been wonderful
everyone comes by to offer their condolences
and food.
i don't want their pity
i just want my dignity

i am scared
i am worried that i won't see my kids grow up
walk them down the aisle
kiss my first grandchild

i miss my old friend
i wish i could share this with him
perhaps i can

the light at the end of the tunnel

i have no voice
there are no words
desperate isolation works
just as good as any
but yet, i know
the truth will set you free
there is goodness to be found here

do i allow my well meaning friends and neighbors
to talk about anything other than this
it has robbed me of my speech
i can't believe how dumb i feel
stammering in silence
my hand up to my face
why oh why
this can't be me,
can it?

do i allow my well meaning husband
to look at me, at first in silence
now avoiding me like the plague
the pain in his eyes is palpable
there is much hurt there
should i continue to serve my fancy
tho it ceases to be
do i reach out to him
yet still?

i think i may have learned
the meaning of no
it doesn't have to be that bad
it doesn't have to hurt
it should lift you up
it should hoist you high in the air
again and again and again

...for now...

crying thru tears
move past all the years
i see your face calling out to me
beckoning
come here it pleads
no, i can not
not today or ever

i sit and ponder
why has life done this to me
the duality of my life
so rich on one side
so deficient on the other
a striking balance so difficult to maintain
a thread hung so precariously
all dangling there
out in the open
waiting, waiting
for the other shoe to drop

in the meantime,
i have found the answer
to the age-old question
how to integrate the two
the merging of the act
the intensity
as waves of feelings envelope me
ride that toy
and ride it hard
until we explode in passion
together

my *old friend* = my greek muse

my *old friend* = my greek muse
it is thru him that i find my voice
whether it is written down
or mumbled along
he is with me always
with his velvety softness
thru thick and thru thin
just like jerry & elaine.

we tried doing *that*
but that was all wrong
so instead of bringing me up
the way it should,
it only sought to re-establish
that which we knew was right
all along
you can't go there
and cum back.
you must come back.
right away

a blanket

i've lost my voice
its no where to be found
time has served no warning
no backward glance
i only speak in metaphors
like twinkly sparkles in the sand

yesterday was no accident
the girl i noticed so
with the flippy hair
and straight white teeth
a rehab nurse, imagine that
brain trauma center
on my bus, with me
to chaperone a bunch of high school
band geeks

the reality of my situation
has not gone un-noticed
there are people who care and worry about me
the situation is still unfolding
like a blanket in the breeze
always fluid
everchanging

respect

maybe its a good thing i have nothing to say
it certainly gave way to him voicing his concerns
he told me he felt like a bad dad,
and a bad husband
he told me that he had to distance himself
he told me that he was sorry
more times than i can count

he apologized
that the timing was so bad
just when i needed him the most
when my world came crashing down on me
he apologized

why then do i feel so sad
because i am in mourning
for a love yet to be found
one that i know i can never, ever have
starving for the attention
from the one who can't give it
nor should he, if he was able

respect
thats the word that keeps coming to mind
my respect for him for doing the right thing
regardless of the circumstances
tho they were misguided, and abrupt at times
he did the right thing
for all the right reasons.

HNT: wanna peek?

come closer.

no, cum closer!

i want to feel your breath against my tits

i want you to want me

i want you to feel what i feel

hunger.


HHNT!

for your consideration

i just bought a new sex toy on-line that caught my eye. it has a nice long handle that allows you to go at *it* frontwards or backwards....all with a curvy g spot thingy.

*clapping hands feverishly*


hey, as long as i've got time on my hands....i don't feel particularly energetic....i can't GO anywhere....what else do i have to do?

see, i knew you would see it my way. (besides, i needed to lighten the mood from yesterday's depressing post.)

remembering

i could see the world trade towers
off in the distance from my childhood bedroom window.
something like seven miles as the crow flies
from here to there
i remember when they went up.
they were like a beacon to me, calling out
it was as if they were saying to me: get out. get out. escape!
and i did. i thrived, in fact

then they came crashing down. and so did i.

since the summer of 2001
when i lost the use of my right arm
for several hours
my bob dole arm i called it,
it hung there like lead
we had just moved into our new house
it was a stressful time

so much has changed in these five years
how can we go from such hope for the future
to such despair
a world so full of promise and possiblities
to a world full of wars
and brain tumors

it just makes me shake my head
and hunger for the best
there is more for us out there
isn't there?
all is not lost
is it?

only time will tell

"awkward"

that was the word he used: awkward. as in "i feel so awkward touching you."

it was last night. at first he said, i just want to touch you, hold you. i was flattered beyond words! how sweet! he just wants to cradle me in his arms...

well one thing led to another. before i realized (ha ha) what was happening, his hands were all over me. touching my breasts, my butt, my crotch. ok, so maybe this would go ok. his dick was hard, my puss was wet-ish. certainly i felt something passionate growing inside me....even if my puss was only wet-ish. his hands probed deeper and deeper. then they stopped. cold turkey.

what the fuck, i say? why did you stop? i thought i was hurting you, he says. well you were sorta...how about if i move like this? that was it. thats when i heard the fateful word: "awkward".

hey buddy, if YOU feel awkward, can you imagine how awkward that *word* makes ME feel? all of a sudden, it came to a screeching halt. once again. we lay there in silence. then he said he wanted to try again, could we please?

NO! i said. no you cannot. i cannot be played like a yo-yo. pull me in, throw me out. again and again. then what happens? i end up crying like a baby, alone in the bathroom, while you happily fall asleep all relaxed and rejuvinated. not this time buddy. its not worth it.

so i rolled over and went to sleep. he probably j/o'ed once he heard my soft, deep breathing. so be it.

hisssssss

how do i cram the rest of my life into 10+yrs? i'll be lucky to live that long. my blood is not cooperating. i take INF injections 3x/week. the brain tumor lurks menacingly. it'll be fine, they say. till its NOT, i say! here one minute, gone the next. just like before.

i woke from those seizures a different person. i see things from a different perspective. i just BE different.

---

my mortality. it sucks. know why? cuz its a heavy burden to bare--even if it turns out to be untrue. kind of a lose/lose situation, no matter how it faces up.

its given me an insight tho into something i need to pay attention to. before its too late: my history of journaling. since 1972. except that NOW is time. the time is NOW! while i remember my on-line passwords....and my blogger name....while i have this forum to speak....i have got to put it ALL down, before i can't.

*old friend* turned on the switch several years ago. he was the catalyst for change. he enabled me to access this special side of myself. a side that must remain anonymous...but yet allows me to share...emote. personally i see it as a win/win. i will not always have this luxury of time. it must be let out. like steam...

HNT: moi?

who me? surely you jest!

see thru HNT for YOU!

happy dance, happy dance!

the kids are in school!

i'm doin the happy dance, happy dance!!

whoooo hoooo!

n-o-t-h-i-n-g

i was thinking that maybe its just me.
i've got nothing to say to him.
his mom comes over this morning,
and i discover that i have nothing to say to her either.
he has even less to say to her, than me.
lots of looong, awkward silences
i try to fill time with mindless chatter
we take our afternoon walk with still no talking
he has an amazing grasp of the obvious
i would rather not comment
i have nothing to say
let it go, let it go.

tonite, at dinner
our teenage son is giving me cause for concern,
his attention to girls, the phone, the band
being on the drumline is position of honor
all the trappings and trimmings
a reputation to uphold
his grades suck however
altho his intellect would disagree
he is distracted
by things other than assignments
lets start the school year on the right foot
please

wait a minute.
why am i doing all the talking?
certainly the father
must have something insightful to say
words that will hit home
reinforce the restrictions i place on son's time
now is important
this is your one chance to turn the corner

but across the table i sit
looking at the man who would be the father
and he says nothing
nothing at all
doesn't even reiterate what i just said
nothing
silence
i am aghast
he leaves me hanging out in the breeze
dangling in the wind
all alone
it was a moment that stood
frozen in time
the enormity of it
only just now, sinking in

girls nite tonite!

its girls-nite-in!! (at a neighbors) it should get rowdy. whoo hoo. i hope i am able to hang in. i did get the INF shot last nite, but i think i feel well enough to go out and par-taaay!

i am so relieved as i have absolutely n-o-t-h-i-n-g to say to my husband. i am all talked out. no animosity. just nada.

i find that my mind is here and elsewhere. my creative juices are just flowing. (i guess thats one way to put it.)

people ask what i do with my days....how do i spend my time? how do i tell them that am able to pass the time so effortlessly? that its easy to let the time fly by here in cyberworld. its harder -out there- in the real world. i find that i am stifled by the restrictions i face, and limitations placed on me. trapped, like a caged animal.

thats ok tho. i have lived life fully. maybe now its time to rest and recover.

HNT: a view from the top

i've had some good days and some bad days
times when i could not stay awake
but on i trudged
throughout the week
pushing myself beyond all reason
for that one chance,
when its my turn
to say Happy HNT
one and all..

...with a special thanks this week, to sexy blogger guy for giving me a great perspective!

daydreaming

I'm waiting for you....over here....cum closer
my pussy is hot and twitching
I need you to touch me, lick me, put your hand in me
feel the wetness, its all for you to consume

my tits ache for you...feel them, tweak them, knead them
they are the real deal, nothing fake.
Cum, suckle at my breasts
feel them tighten in your mouth.

Cum here, let me kiss you all over
your neck, your mouth, your butt.
I need to touch you
to run my hands all over your body
caress your tits
suck them and bite them...just a little....
work my hands and mouth down to your waiting cock
its growing by the second
its feels so good
as my tongue explores.

I hear you breathing harder and harder
the sound of your gasps make me want you more
deeper and deeper
you taste so good
enjoy and savor the moment.

But wait, its not time yet.
Now I want you to explore
to get to know me, inside and out.
Kiss me, touch me, feel me all over
Do you like it when I touch myself like this?
Can you see my finger probing deep into my hole
Its so wet and juicey down there
cum, take a taste, I know you'll like it
cum on, fuck me with your tongue
feel my whole body shake and shudder
for you.

Cum here, lie down.
I want to climb on top of you
Can I turn around
and face backward?
That way you can see your dick
as it slides in and out of my pussy
See how hot that looks?
Your boys feel nice and tight
the skin on your thighs so soft.

I want you to cum
I want you to have a mind blowing experience
I want you to do to me
whatever your wildest dreams have imagined
I will do whatever you ask.
Anything you want.
I am your slave...

nooooo!

say it ain't so!
i guess it was a rhetorical question, eh?!
its been rampant in my neighborhood too.

News report says Bruce Springsteen has the fever for a widowed redhead
Friday, August 25, 2006

http://www.nj.com/news/ledger/index.ssf?/base/news-8/1156486625219130.xml&coll=1

YES. everyone does have a hungry heart.

the gnawing question remains tho: is there room for more than one person in your heart to love passionately, deeply? does one have an endless capacity for love? afterall, the heart is a muscle. it can stretch and grow throughout your life. love is empowering, it gives you strength. isn't there always room for juuust one more? i am not sure that there is a finite amount that can fit.

my heart is so hungry. is that because it is not completely full? (sounds anorexic to me....a constant state of hunger...) or are there simply not enough people in there to top it off? (my group would be relatively small...no family ties at all.) is it sheer human nature to keep looking for that special connection that reaches to the core of your soul and fills you up?


lots 'o questions. little answers

my scenic view

i went to the blood doctor today. my numbers are back up (not as high as before tho.) argh! we'll keep monitoring. yea, yea. since i can't drive due to the seizures, and because the doctor is nearby, i decided to walk home from my appointment. its only +/- a mile, or so. it was nice and hot and sunny. good thing i had the sun behind me tho, otherwise i might have fainted. my arse was draggin.

i just feel like shit. by thursdays, i am pooped out. HNT at least gives me some inspiration. the doctor could see my old spirit was MIA too. i do hope that i can recover some of it back. i am living in some kind of limbo...pergatory...waiting to emerge on the other side.

my hands shake (a lot!) i am so tired. will i ever feel better? only time (and blood tests and an MRI) will tell. i remain optimistic.

the kids are never here. they are off somewhere else. i'm kinda trapped....even tho i am secretly enjoying the solitude. shhh! don't tell anyone. its quiet. my house is my sanctuary. even the sheets on my bed are cool, crisp and inviting.

i just got a call from a neighbor about tonite's dinner. it will be here at 5:00. how lovely! everyone is being so nice, and is truely worried about me. it humbles me. its hard learning how to say thank you, and truely being grateful for all that life has to offer.

count me as one who is enjoying the trip, and not only looking toward the destination.

happy HNT!

grrrrrrrrr!!

lest you think i was feeling up and perky, i want to remind you that hubby is giving me interferon injections in my tummy 3x/week. physically it leaves me bruised and dragging, but emotionally it charges me up, goddamn it! i have more lives than a stinkin cat, and i ain't dead yet. bring it on. purrrrrrrrrrrr

inspiration

it can be found in many places. thru the words i read, the pictures i glance at, the memories i embrace. *old friend* turned on a switch inside me that continues to heat up to this day. i seem to need that continued inspiration.

i have been so horny lately. the hubby seems disinterested. his focus is on giving me my inteferon shots, keeping track of my health, going to work and falling fast asleep at night.

yesterday, i had to take matters into my own hands. right there, in the middle of the day, on my knees, watching myself in front of the mirror, next to our bed. it felt so good, even if it took a while to find my lube, change the batteries in the vibe, juice me up and finish the task. i felt better...lighter...floating on air, once i was done. but i need some more. i need the real thing.

so last nite, even tho i snuggled up next to hubby, he appeared disinterested. i cajoled, and tempted, rubbed and grinded. finally...finally he gave in. i love him dearly, but in retrospect, his love-making skills suck. his kisses are stiff, his body rigid. once again, even tho i was fully inspired and motivated, he left me wanting. wanting someone else, that is!

where is the bliss? that surrender? that feeling of walking on air? sad to say, i do better at achieving it alone, than i do with hubby. how sad. he is a good man. no, he is a great man. he just can't be great at everything....

subtle understanding

i am at the end (beginning?) of a long tunnel
my perspective is lengthened by
the vast division i feel
between ME
and the-rest-of-the-world

i feel so detached,
so seperated by a lifetime of differences
cultural, medical, economic, dysfunctional and abusive.
here's to those that blossomed under the best of conditions
and those of us that did not
i will basque in your light
and find strength there
i must stay strong
treading water frantically

lonely in a crowd of people,
my life may be ending within a decade or two
i feel further away than ever
i am watching you all from waaaay over here,
and see the chasm between us growing ever wider.

i never had the opportunity to feel tethered
grounded
held firm
protected
i thought i did
but i see i was wrong.

so its one big, long, vast expanse
the deeper i get
the further i go from here
the more comfort i feel there,
waiting for me
on the other side

a collective of souls
all reminding me to be patient and realistic
understand my gifts
and limitations
a quiet inner resolve
giving me strength
and a sharper focus
my hungry heart must be filled

(finally) Happy H-N-T!!

i am strong.

i can leap tall buildings in a single bound.


how super!


happy H-N-T, one and all....

le hump day

i am trying sooo hard not to slide down this slippery slope i seem to be holding on to for dear life. i've got my nails dug in tight. (note to self: sched manicure appt.) i won't let it get me down. people are starting to say i am looking and sounding a bit depressed.

whoo hoo. is this what i have to look forward to? is this what all my doctors have been trying to avoid? so far it sucks. i feel like a caged animal, pacing back and forth in my confined, yet oh-so-lovely, abode. my captors have me sufficiently drugged, so that i do not want to escape...and if i do, i'll be right back. i am too pooped to go too far.

boy oh boy, i could use some good nookie. hubby is too much like work. a few hours to escape outside myself...make me forget my troubles for a while. sounds heavenly. now why can't doctors prescribe that??

le hump day eh?

hump this.

tooosday

i keep waiting for my days to get better. they seem to fly by. i have no energy. its been a blur. i am so fucken exhausted. weary really.

mindless. without a mind.

the way i go thru over 6000 recovered files to find my special pix. it wasn't so much that i wouldn't have any pix of the kids et al.....i was afraid that there was gonna be no pix of ME left. how else would they look back fondly? it was if my whole past was erased. gone.

hmm, and i've always been known to leave my mark where ever i go. ok, so in this case, its more like an imprint! hear me roar, goddamn it!

cough, cough.




"People take different roads seeking fulfillment and
happiness. Just because they're not on your road
doesn't mean they've gotten lost..."
(--H. Jackson Brown, Jr.)

not-naked friday

since i was not up and working for HNT yesterday, and since i did not want to arouse any suspicion, and since i am reluctant to thrust any naughty pix your way, i will start with my first NEW pix on my NEW operating system. my NEW jewelry box, sitting on my NEW sitting area that hubby made for my bday!

have a great weekend one and all.

re-booting

what a metaphor for my life.

my computer crashed and burned this week. it was ugly. i have a whole new operating system...all my old memories, old pictures, old files, are corrupt, gone or seriously compromised. i am starting from scratch. everything is wiped clean. a new beginning.

just like my life right now!!. the seizures (and subsequent brain tumor) really threw me for a loop. i feel like my operating system was wiped clean too. i woke up a different person. i am definitely moving slower (not that that is a bad thing) in all phases of my life. my friends and neighbors have been so kind and wonderful to come to my defense and help me....with dinners, with computer assistance....

its funny. when i think of the way my life is operating right now, a huge mobile by the sculptor Calder comes to mind. there is one in the atrium of a big beautiful building nearby. way up high, on one side of the mobile are the pieces that act as counterweight, to the other pieces....that are hanging waaay low. in essence, everything is either really UP or really DOWN. there is no grey area. the goodness in my life is really great, the "badness" is reeeeally bad. and its all hanging on one thin cable...

want more good news? i had my blood numbers checked yesterday for the first time since the interferon shots. guess what? for the first time in 30 years, my numbers hit in the normal range!!! can you believe it? (fyi: the shots have not been getting any easier--at all!) i really don't feel all that well, and i am tired all the time.

...and my brain surgeon said my tumor is inoperable. you call that good news?? its something we'll have to follow closely. i get another MRI in a couple of months.

see?? its like the Calder mobile....all hanging so precariously, in a perfect balance...

anyway,

here's to NEW beginnings! it may take me a while to get up and running (right now) but have no fear, i am cumming back. you can count on it!

one end

i had a vivid dream last nite. i don't remember much. all i know was that i felt trapped, confined, with lots of people all around me, all looking at ME. i went beserk. just crazy. flailing, screaming, yelling, shrieking, cussing profanities like a deranged women, scratching, clawing, trying to run away. the sky was gray. i just wanted to escape.


yesterday i had my appt with a neurosurgeon. what an extravaganza!! kept waiting and waiting. this guy we know...the chief of neurosurgery for a large prestigious teaching hospital...he reminded me of hawkeye pierce from mash. not just the actor (alan alda) but also the character. the personality. the *star* of the big show (brain surgery.) you know, the guy with all the smart answers...

he says we'll never really know what its made up of (le tumor de brain) so we should probably check it out.....ef you, i say. you are not taking any core samples of my brain. i find the whole prospect of it, purposterous! get fucken real. no.

so i'm gonna have a big fancy MRI in a couple of weeks, then see mr charming brain surgeon. then we will discuss. he actually said "just radiation and chemo" something...blah, blah, blah. fuhget about it. no.

today i ventured out on my own. since i can't drive myself, i had to rely on others. i snuck away for a bit and placed a call to 'old friend'. it really bummed me out, that my bday came and went without nary a call or reach-out from him. the first time ever really. he always, always remembered. ever since we were young. but not this year. this year of ALL years. sheesh.

the conversation was not overly pleasant. in fact i hung up on him. twice. he didn't call back after the second...

he was defensive. he was worried. he was guarded (and how.) instead of it being soft and tender, it was rough and hard. he said i was mad at him! (wtf?) i said no, i was disappointed in him. that very essence of who we were, and what we had--the bond, the friendship--was compromised. cuz NOW, when i need a good old friend the most, he is gone. he was actually pissy with me. it was like he waited up, practiced his speech in his mind a thousand times, and let it rip.

don't tell me what we had was "unhealthy". not good for either of us. fuck that. what about NOW?? when i need you the most...

i told him about this blog. i told him i post pix. he didn't seem too pleased at that. good. let him worry. (p.s. i tried yesterday--half-nekkid thurs--and my camera didn't work. argh! hot cheetah print bra and everything...don't fret. i will try again.)

anyway. its all done. its over. i told him that if i had to wait to hear from him, it might be too late. i thought he should know. i could die...and relatively quickly.

how 'bout that folks??

the ramifications are overwhelming.....

one day down

all in all, it went well today.

hubby was a good doctor, and he said i was a good patient.

a good start indeed!


it occurred to me that one reason my heart feels so hungry, is cuz it's a
*hurried hungry heart*!

hey, ya never know....maybe i always "knew"....



Courage is being scared to death--and saddling up anyway.
~John Wayne

the discovery channel

the intense heat
of these extreme summer days
sizzing outside,
and inside too
a fire that is burning
deep inside the ground
chemicals to inject
a burning hell

like the TV show
about pompeii
i saw last nite
hot explosions
of misery and fear
raining down

stopped in their tracks
right where they stood
life in motion
frozen in time
forever memorialized
cut
down

but
some survived
escaped the pain
reached freedom
to life anew
planted new roots
start from scratch
begin again

the key to success?
they got out early
before
the weight of the world
shed its terror
bearing down on them
over and over
buried
before it was too late

for me
only time will tell
how long i lingered
and rode the wave
toward a new home
or a premature grave
like my grandma esta
cut down
taken away
in no time at all

i am pleased with the journey
my life is rich
it has been fun
i am happy with my choices
live life to the fullest
as deep and wide as i go
tho it is no secret
my heart hungers for more,
i am a surviver
to hell and back
again and again
i can take the heat

the final frontier

my last chance.

i will be starting chemo (interferon=INF) next week. i am out of options. this is #3 of 3. it is my last hope. my dr sat with my husband and me (it was the first time they had met) and he really looked concerned...it wasn't only his words either. his tone was somber. the bleeding events really concern him.

i am a time bomb waiting to go off....and this has nothing (really) to do with the goddamn brain tumor. thats just icing on the cake. i see a neurosurgeon next week to talk about how to track that....

the good news? i generally tolerate drugs well, so i am hopeful that i will tolerate the INF well too. what choice do i have? the side effects are supposed to be awful...and potentially harmful too. but it also has the potential to stop any further damage from happening.

but, its the damage that has already been done, that concerns me the most. is it too little, too late? has the dye already been cast? a stroke, seizures, brain tumor and scary bleeding events....isn't the damage already done? i have been educating myself over the years. judging by my knowlege and "expertise", i think it looks bleak. ie: an early grave. this disease certainly wants to progress....

hubby and i get our training from the drs office once the drug comes in next week.....and oh boy...it has been nearly impossible to obtain. its expensive, hard to get, and evidently insurance is reluctant to pay. either hubby or i will have to inject me with pre-loaded INF syrnges at least 3x/wk!! eeew. can you imagine? more fucken needles.

its like the pediatrician said: i'm just *made bad*.

yesterday tho, my hemotologist did commend me on my attitude and fortitude. he said he was proud of me. that made me feel good, cuz in spite of it all, i feel strong.


information is power.

surprise, surprise!

who would have thunk it?
me!! thats who!

Greed:	Medium
Gluttony:	Medium
Wrath:	Very Low
Sloth:	Medium
Envy:	Medium
Lust:	Very High
Pride:	Low

The Seven Deadly Sins Quiz on 4degreez.com

happy HNT!

"You can't control the length of your life,but you can control the width and depth." ~ Author unknown

have a vunda-bah day!

passing thoughts

when i was a little girl and my mother took me to the doctor for yet again, another ache, pain or issue....the pediatrician said to my mom when asked why i have so many problems: "what can i say? she's just *made bad*." it became a sick family joke all these years. and total prophecy. i am made bad. thank god i look good. appearance is most everything...

i have had several friends--both that know about my secret world, and NOT know--that have commented on the lack of bday gift from hubby. don't worry guys, it doesn't bother me. i know he is good for it. i am just thankful that i have this forum, this *club*, to voice who i am and how i feel. he wrote me a touching poem, and has stepped up to the plate in a way he never has before. i am grateful. it ain't nuttin but a ting...this token of my birth. i'd much rather have good health, than a trinket. its the yin to my yang...this secret pleasure....

i seem to be bleeeding like crazy from my "attic and my basement" since the seizures. getting more blood work done tomorrow morning to analyze the situation. i spit out huge mouthfuls of brite red blood today when i brushed my teeth. it scared the living shit out of me. things have calmed down for now fortunately. sheesh! yuk.

i feel too crummy to feel terribly horny. thats a blessing. the time is just rolling on by....

i am actually in a pretty good mood for someone who has all this shit hanging over them. i find that i am enjoying the simple things much more. i appreciate what i have...who i am. i am in no great rush. suddenly, life has become so much easier. i am limited in what i can do. thats a good thing (for now.) once the weather changes, i may be singing a different song, however...

****time out****

argh!!!!!! i just got off the phone with my hemotologists office. the stinker is gone for the day, did not call me back, and there is a problem regarding my coming in to get blood work tomorrow. they can't do blood work that faye ordered. wtf?!?! if he had gotten the message and called me back, he would have ordered the same goddamn thing himself. grrrrrrrrrrrrr. i am so pissed. what was i saying about being in a good mood?! argh!!!!

happy thoughts, happy thoughts, happy thoughts.....

the only place i can go for happy thoughts is waaay back when 'old friend' and i shared our magical times. now THAT was some kinda wonderful. despite it ALL, it still makes me smile!

no regrets. great memories. :o)

a real 'sit-down'

finally had a sit-down today, with my fav doctor of all time: my neurologist, faye.

SHE is the only one who took the time to SHOW me what i am dealing with. i saw the MRI's! its waaay bigger than i thought. jeez, drs get excited about little itty bitty calcifications in my breast...BUT the size of this puppy was pretty big! a stretched out nickel-size...in the middle of my fucken brain. the area that controls the sensations i feel. (on my right side. it sits in the left brain. its the way we humans work...)

anyway, we discussed and analyzed every single event that i seem to be having. my right side doesn't seem to be working as well as my left. i need to determine whether there has been permanent damage...thereby establishing a new baseline for comparison....OR....do i need more antiseizure drug to quiet the smaller seizures that appear to be happening thruout the day(s). she and i will talk again this friday to get a sense of whats what. its interesting, in a morbid sort of way. thank god i have her as my advocate. she is looking out for me.

all i know is that at this point: 2 weeks out from the seizures, i feel off. something is not right. it really sucks. big time. no highs, no lows. total ambivilence. moderately annoyed in fact...

add into the mix: frustrating sex with hubby and NO gift (its ok, i understand), NO birthday reach-out from 'old friend' (1st time EVER), well meaning but annoying girlfriends, extreme fatigue, dirty house and feeling like a trapped, caged (albeit limping) animal. will i ever feel normal again?

when it rains, it pours.
monsoons. deluges. tsunami my world....

i am not scared, goddamn it.

its my birthday!

the timing
the irony
starting my blog
meeting my biggest health crisis
Head On
i have a brain tumor
happy birthday to me

it sucks big time
its hard to believe its real
flowers, cards, and well wishes
trinkets, gifts and toys
tell of an alternate reality
the tangible one
the one to hold on to and cherish

yet
it seems that i have developed
a bit of a 'tude
please people!
stop looking at me
with big sad eyes

i am sick for no goddamn reason
an overdose of meds if you will,
trying to treat the problem
of the hand i have been dealt
more questions than answers
no solutions at hand
all attempts at quieting the storm
only creates more
chaos.

my quest has become more important
than ever,
my hunger
more insatiable.

a birthday to remember indeed

missing

Have you seen my friend?
He used to come around
we would talk about lots of things
politics, sports, homelife,
the cute things our kids say

then, at other times
our talks would be
so thrilling and exciting,
erotic and sensual
the adrenaline coursing
thru our veins
pure joy and glee
riding, like in waves
soothing me to my core

Have you seen my friend?
He is wise and profound
youthful and reckless
I used to feel his spirit
inside me, a warm glow
making me breathless
and filling a void long unattended

The warmth and good cheer has vanished
A cool breeze now fills the air
the place he used to be
once so fulfilling and comfortable
hot and sexy,
now lies empty
with a silence so deafening
its screaming in my head.

Have you seen my friend?
He does not know of my recent
health crisis
his soft calming voice
would be like a warm blanket
soothing me
protecting me
giving me strength

i miss him so
now,
more than ever

hurry up and have fun?

its funny...and not in a ha-ha sort of way either.

with ALL that i had going on in my life, i felt like i had some control of the life i have left before me. i made the choice to put myself *out there* to open myself up to the world....to boldly go where i have not gone before (to coin a phrase!) to live life to the fullest....with all its bumps and bruises. but NOW? wow, the future is upon me. suffice to say, losing all concept of reality and time, i took a leap to the place that i may be spending eternity. its pretty dark and dreary.

did i like the view from there? am i happy with the job i did, here? the choices i made?
no, no and no. but would i do anything differently next time around? no i wouldn't. i made the best choices for me, at that time.

everyone is making such a big fuss over me and my situation. its un-nerving. i do not want to have to hurry-up-and-have-fun, before my time is up. i am not ready yet.

i'm aliiiive....and its HNT!

i'm alive and kicking!!

...and seizure-free! whoo hoo!

happy half-nekkid thursday one and all~

its been a tough week for sure. i am trying to keep an upbeat, positive attitude. tomorrow is my big doctor appt. we shall see what that visit will bring. hubby and i will take all my tests, MRI's, CAT scans, et al with us for analysis. then i want to put all this c-r-a-p behind us! its depressing. i want to get on with the rest of my life.

i'm starting to get horny again....thats certainly a good sign....but for whom? hubby will be pleased, but i fear that i will once again slide back into that miserable place where my needs will remain un-met. so much of my body is numb right now, that i wonder how much sensation i will actually feel...? perhaps i had better attempt it alone, before i proceed with hubby. i shall be sure to keep you posted.

life goes on....

round 2

.....so i went to the all nite girls sleepover party friday nite. we all had a BLAST!! it was so much fun! we stayed up late, drank blueberry daquiris, swam in the pool, laffed and tawked till the wee hours of the morning. then saturday morning, in front of all my friends, i had another TWO seizures, and was taken to the emergency room once again....

the docs think they found the cause of my problems. get a load of this: i have a benign, inoperable tumor on the thalmus of my brain!!! what the fuck??? i will find out this week how we will treat it. one doc said perhaps radiation treatments. this sucks big time. in the meantime, i am loaded up on anti-seizure meds, so as not to have any more mishaps.

i have been overwhelmed by friends and family with cards, flowers, warm wishes and food! i confess, it does make me feel good to know that so many people care about me....i only wish the circumstances were different. i feel groggy and slow....but otherwise ok. right now i am waiting on a call back from my doctor, telling us (hubby and me) when we can come in for an appointment.....

keep thinking positive thoughts, and i will report back as soon as i know something...anything!!