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