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?