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....