dancing inside myself.

the love of old friends.

2019-09-29T07:38:00.001-04:00

i start chemo on wednesday.
abraxane the wild horse remember?
jerry led me to a healer who moved my lymph
and helped me have peace with the wild winged horse.
she said the disease had gotten ahead of me and
there was a time for western medicine.
she said there was hope and i believed her
and she put tape all over my back and
i’m scheduled to see her two times a week
to help my body come back to flow.
for i’ve been clenching so deeply into my center
because of the pain.

yesterday a dearest old friend appeared.

because there is nothing like a playmate you’ve known
since you were a teenager.
a playmate who is such a dear old friend
you can bask in remember when’s.
‘remember when you and danny showed up naked at my house
in the middle of winter wearing only scarves and boots?’
yes.
‘remember when i woke up tifph at say 2am when you lived together in taos
in mike reynolds crazy pyramid mansion cause i was drunk
and i wanted to talk to you?’
yes.
remember when summer camp was your life and you often grumpily waited
through the school year to get back there again?
oh my heart is bursting yes.
you made me feel like my life has been full of so much joy.
and you have loved me the whole time even if we haven’t seen one another for years.
for a day i didn’t think about my health.
bless you so deeply.
bless you for vaporizing with me and going to argus
and staring at all the beautiful vegetables.
finally fractal cauliflower and hubbard squash and wild mushrooms and bags of spicy greens
and yellow cucumbers and tomatoes of every friggin color.
i love you.
and you have always touched my life with beauty
and rascally joy and ridiculous adventures and heart open words.
thank you for making my life beautiful again.
for waking me up.
i adore you.
i want to see you again.
i intend to.

a little less claw.

2019-09-27T04:34:00.000-04:00

nobody should ever have to make these decisions.
i can’t sleep.
i’ve got a potpourri of opioids.
they make me sleepy but don’t cut the pain.
i never thought walking would be a struggle.
chemo?
a study?
simpson oil?
god?
where are you god?
i wish i knew you better.
so we could talk.

harold is a cuddler.
tonight he gets in bed and kneads my face.
a
little
too
much
claw.
but i let him do it anyway.

prose that is sad because sometimes i am

2019-09-21T23:34:00.001-04:00

avoiding shock.
i was stable for years.
still afraid every day
that never changes.
tumors in my abdomen grew recently
and then they grew again
and spread to other places
one being my lungs.
i stopped the IV mistletoe.
i stopped the avastin.
i stopped the PARB inhibitor.
we have hired a company to search studies
hoping for immunotherapy.
before then
i am going to do a small dose of weekly
ABRAXAN.
ABRAXANE is a wild winged horse.
i had a dream.
i woke up with an electric shock surge through my body.
it felt like god.
chemo usually kicks things back quickly.
and i could really use some pain relief in my leg.
so i’m choosing what i didn’t want to choose before.
i can’t walk much.
never thought that would be my world.

this.

2017-08-25T22:30:00.000-04:00

because it brings such a memory like light in crystals.
she.
bleary eyed having just woken up.
sister says shes running around the campground.
child-laugh permeating morning mist.
pancakes on the griddle.
cut up fruit on paper plates.
running legs light like feathers.
there are others across the pebble path.
just like her.
jelly shoes.
dirty fingernails that wont be trimmed.
best friends melded in ten minutes.
that kind of freedom.

all because of her little cotton shorts with dolphins jumping.
all because of the soft three quarter length sleeved shirt with horses printed on.
purple sleeves past elbows.
terry grey.
terry grey.
scalloped at the waist.
(she slept in it).
then she woke up bleary eyed.
and all of this started.
all because of those sweet messy yellow braids.
that body light as joy.
the stallions running across.
we know it like it was us.
we used to eat cereal dry right from the box.

I still love you big.

2017-07-20T17:40:00.002-04:00

for alison.

when we were 12 we went to summer camp together.
we brushed each others hair on shabbat.
we hid behind the cabin and kissed dark haired jewish boys.

once when you fell asleep hard
I cohearsed the girls in our cabin
to put your finger into warm water to make you pee.
it didn't work.
we were all scared to wake you up.
i'm still scared to wake you up
but id risk it.

cause love is like sisters
and washing eachothers dishes.
and sitting beside just to calm the nerves
of the one you love.

three little dirty blond haired girls
sit car seats crammed together in the back seat of your matrix.
mistaken for sisters.
we made babies and pushed them out.
you pushed yours out so quick i almost didnt make it in time.
I dont know how we grew up enough to push babies out
but we did.
we did it real good sister.

we used to make each other friendship bracelets out of DMC floss.
we were once swim buddies.

edges

2017-01-05T20:11:00.000-05:00

you are just like a puppy

wanting to reach the edges to be held in tight spaces.

pushing out with soon-to-grow tiny paws.

when you were on the inside you kicked

your inside legs out straight smashing

your heels into the walls of my inside flesh

I could see the outline of your heels

bunny kicking! when you were on the outside

and a little one sharing our bed

I recognized your synchronicity.

you performed a ballet of your own inception into my then fleshyfeminine body.

into papas too and he would get out of bed

and go sleep in your pale yellow baby room

unable to rest.

to me your jabs were a reminder of my once juicily luscious belly

and loving you so good while you were still a part of me that way.

you jerked your legs out knees barely bent

pushing your soft underfeet

again into my bones and I knew you were feeling for stretchy pink walls,

seeking the edges of comfort.

oslo seeks the edges too.

the nine week old pup wondering why his furflesh is not still colliding

with that of his siblings as it so recently was.

(proof there is truth in the pack).

we find him squeezed in between two way-overstuffed black garbage bags

full of clothes to be donated.

wedged just in between seeking the edges.

we find him curled up on a plastic mat in between pairs of rubber boots and fastmelting snow.

then fluffily danced between his own stuffed doppelganger and the couch

drinking comfort

inside little wild

puppy dreams.

I never wanted you to leave our bed.

so precious the time of silence and warm feathery skin.

your innocence in dreamtime.

any discomfort was abolished

by my unquenchable thirst

to stay close to you

as long as I could.

and now you are six years and three months old.

one of those numbers is even and one is odd.

you still bunny kick me in bed but I understand your need

to meet the edges.

I smile inside myself contemplating your six year old heels

now hardened on being the warrior that you are.

your heels pummel my belly

and I smile inside myself.

because I know your subconscious yearns

for tight warm spaces.

to be wrapped complete in child’s bliss.

you,

akin to a puppy seeking the edges.

while you sleep

and I am awake.

loving you with ferocity hazel.

.

it was a dreamy asking.

2016-12-23T12:47:00.003-05:00

when i asked that question.

a dreamy somewhere in my guts was raw

but mostly i was wondering how all this works

this time around.

wondering why people disappear,

specifically i suppose for all different reasons.

I did not mean to have the effect on some of you that i seeem to have had.

I was not seeking apologies in any way.

i know we are all full in our lives and i am too.

it was never all about me reguardless of my health.

i dont even have the emotional space to keep

all the connections i once had in my life.

let me say that again-

I dont have the emotional space

which is why to some of you i seem to have dissappeared. right?

i have.

i know.

i love people i am hardly in contact with.

like really really love people.

that is sad for me.

I did not mean to ask that you do anything different.

really i didn't,

though i see now it might have seemed that way.

please.

2016-12-22T16:51:00.000-05:00

help me understand.

are there people out there
that are so uncomforable with cancer
that they dissapear from your life
because being close would be just too painful?

c.

just to let you know.

2016-12-22T16:43:00.001-05:00

this dresser used to rest
near the entryway of our
farm house where we lived
in the country. yellow backed
up against yellow walls that
nancy faux painted as a wedding
gift to us. this dresser was packed
with your records that hung
too heavy and snapped off the
bottom shelf then rested
there on the ground for months
because we were too busy fighting
to attend. also there was the record
player that we hardly used
and a thick buttery stack of
national geographics you did not
want to part with and in the end
tossed away. the pull drawers at
the top housed a mishmash
of rotating non-necessities. cd's,
a box of chicken feathers, keys that
unlocked nothing, fried batteries,
cassette tapes, and sand timers to
encourage our daughter to
dress herself. sometimes a stashed
away paci. it stayed strong while
we fell apart. yellow and true.
it hovered still and empty for months
trying not be be noticed while our
confusion ensued. when we sold
the farm that was our dream not any
longer i donated it to the dojo.
now it would rest against burnt red
walls. yeasterday i saw something
magic. it has become a house for holy
things! holy of holies!
votives, ceremonial cloths, tiny vases
then boxes of kleenex and matches.
sacred images stand atop it.
it is now out of our hands.
i thought you might like to know
something cleansing and lovely has
come of that pain.

it is ironic.

2016-12-22T16:22:00.005-05:00

I've been pretty happy of late id say.
enjoying my livingness.
excited about little things.
in the moments moment so i dont worry about what i trick myself into thinking i should be doing.

today i went for the 6 week results of the post 2nd brain surgery.
remember they saw something on the MRI while i was still in house
and werent sure the tumor was removed in full.
its clear.
its clear.
'its quiet in there' dr orringer says.

I always brace myself.
because more often than not the results have been bad.
now im going to live longer.
maybe even longer.

and i feel queasy.

ive been happy yet not doing much.
my apprenticeship ended for lack of funds.
my organization biz is on the slow start up.
i have a doula client in march.

when i have no hazel i dont have anything i have to do.
and that has been fine.
because my mind and heart have been in creativity.
until now.

i think that coasting needs to end.
im overcome suddenly with a lonliness that had abated.
and a lack of direction that feels like everything falling in.

h left this morning for school and i wont see her until the morning of the 27th.
i dont love that.
she told me last night that she was going to the mall with grandma and grandpa
to see the real Santa.
and get her photo taken on his lap.
'santa fairy?' i said.
and almost threw up in my mouth.
i told m. to make sure its an african american santa please.

i feel shame for being not only grateful there is no cancer in my brain.
of course i am thankful.

cancer is twisted what it does to your thinking and your living.

c.

december third 2016

2016-12-03T20:34:00.001-05:00

my divorce is final.
i dont feel any different.
maybe i feel relieved because we dont need to compromise officially anymore.
maybe i feel relieved because he might start to take down some walls.
maybe im sad (still) because i tried to make something beautiful and it fell apart.
does that ever go away? im serious.
i think it only does if you fall in love again.

reguardless im feeling more peace.
and there is hazel. she is everything. the only reason why its all worth it.
you get it.
i yelled at her today.
she hit me full force with her little hands.
because i stuck by my word when she decided not to listen.
when i yell at my daughter i hate myself until it gets quiet.
when i yell at her i sound like my father used to sound when he yelled at me.
i apologized later and told her i was really really mad about what she did.
but its not okay to yell like that and i was really sorry.
'its okay mama i forgive you.'

im struggling with this blog again because i want to write whatever i want to write.
sometimes i get mad and sometimes i get pissed.
and sometimes im not with open heart.
so im sacrificing my creative expression so as not to upset a few select people.

poll in love toward a few select people:
if you find offense in what i write please instead of reading it-
stop reading it.
i choose to enable my heart.
more for me than anyone else.
maybe one day for hazel.
i feel like ive distanced myself from a very large part of my community over the last year.
i felt so held and connected at first and then things got real messy with matt and i
didnt feel free to dump it out anymore.
i miss feeling close.

im recovering well.
i apologize for no update post second craniotomy.
the reason for this is explained above.
status is they are not sure he got it all out because there was a shadow on the MRI.
so at the end of december ill have another scan.
tremors in my left hand have improved.
i did have a seizure the day before my surgery,
likely caused by the tumor.
i think the most terrifying 15 minutes of my life.
i dont recommend it.
the state of michigan forbids me to drive for 6 months.
oh jesus.

c.

post surgery with my girls.

i havent been too chatty.

2016-11-08T09:19:00.000-05:00

i know.
i feel sometimes that my health is taking over my life.
and im working real hard to switch that up.
lots of good things are moving in my own human development.

still.
i have a second brain surgery tomorrow i have not shared about and im doing that now because i want to bank on that connection between us all. and i want to ask that you send prayers to my body and my family and my heart and dr. orringer. for a safe clean surgery. tumor completely removed NO RESIDUE CELLS LEFT BEHIND! gentle recovery. love received.

this is what is called a superficial tumor because its close to the surface. he will remove the titanium plate in my skull and enter in the same spot he did for the original surgery.
this tumor was found because ive been having some symptoms on my left side.
increased tremors, weakneess in my thigh muscle, and BOOM i have no reflexes on that side.
i did not even know that was possible.

why are all my doctors so damn handsome?

anyway.

ill get to the u of m hospital at 6am tomorrow morning with my family brigade including hazel who wants to be with her mama this day. mine is the first case of the day. i imagine it will begin around 730/8am.

im feeling a bit of shame that i have not kept you all in the loop.
please forgive me. know my love has not waned. my yearning for your love intact.

im going to go vote for hillary crinkle.

c.

below: fall pickings for your pleasure. (this girl is 6 now!)
middle pic is h helping at the woodshop i work at in ypsi.

about hazel’s body.

2016-10-10T21:32:00.000-04:00

in the night

braids now dry from yesterdays pooling

nakie body she turns over

and THWACKS her little headcheek on top of my face.

wrapped over now like a puppy

curled tight to her sister in exhaustion and

sordid devotion.

and I think about her wee body

and how much I love it so.

how she moves it that is what I love best.

(im scribbling in the dark just so you know).

as a bebe we layed her on her back

and shaped a game called EXERCISES

and we moved her tiny parts crosswise

marrying and arm to a kitty-corner leg and over again.

we sung to her

‘exercises exercises ex-er-size-es!’

she is so inside her body now

(I think of how I hid terrified in mine).

she turned six two days ago.

with her papa she goes to dance church on sundays

and with her papa she goes to contact improv too.

at rosemary house we move all the furniture out towards the edges

and that is our dance floor

and really we mostly dance to regina spector and she knows all the words.

she is drama and un-due-lay-shon!

I will at no time tire of dancing with her.

and if I do then I never will.

this girl once at my breast.

and the thing that I squeal for?

her little bum bum.

HER BUM BUM!

it is so soft and strong and fits just right in my palm.

and she sings

‘wiggle mah bum wiggle mah bum.

MA-MA HERE IS MY BUM! (oomping it out at me).

and I do I do I love all her little parts

that arent so little anymore.

so though it pained me some

I lifted her heavy head off my cheek.

I lifted it off because this prose was square dancing inside my head

and I wanted to write it down.

she is my light like you are your mama’s too.

im on the clock

2016-08-05T21:07:00.000-04:00

because i want to get to bed by 10 because ive been tired much.
i have a necessary to share though for positive brain babblings:

my scan came back 'mostly' clear!
there is still a little part near the old tumor that is glowing on the screen and questionable.
it could be scar tissue or the olaparib working
(apparently it can grow cancer before it gets put in check).
so thats positive!

i put off getting the results while i was in california/oregon with hazy.
i have some pictures to share. of really big trees.
the mother is divine.

and an epic hotair balloon ride happened.
i can explain later.
i will, its a total terrifying riot.

c.

and i just dont write anymore.

2016-07-06T20:01:00.001-04:00

its hell-of fucking hard if you want to know the truth.
i have good days, good half days, good hours.
marvelous realizations!
the work is pretty exhausting.
i wake up exhausted.
my main pains fluctuate between illness and aloneness.
ive gained alot of ground in my relationship with matt.
so much gratitude for that.
most of my pain is this:
im
fucking alone!
and nobody should have to go through this alone.
this is messed up.
im not forgetting you!
my family and close friends who remind me i am not alone.
but i am in the sense that i yearn for.
all of you have people!
not having a partner and experiencing this is devastating.
im real hung up on it which makes it worse.
real hung up right master kim?
someone to hold me,
even to be another body in my space here.
i want to be rescued.
which i know now is exactly the opposite of what will heal me.
i know partners can complicate.
but in the least there is a feeling of safty and protection.
sometimes i want to scream-
'adopt me!'
'let me put up a yurt in your yard!'
'who has a little cabin behind their home that is not in use?'
maybe one of these will come to fruition.
what i am here is a person who blossoms in community.
a person who goes to lengths to create new community.
a person who has often lived in community.
because it makes sense.
duh
c.

i love prarie smoke bushes and

2016-06-15T15:22:00.001-04:00

i love my friend don.

i had an interraction with a strange girl in ypsi.

in a crystal shop (i know a crazies fave hang out).

she sidled up beside me and demanded to know if i was okay.

my first reaction was 'she knows i have cancer! i must look horrible!'

i answered her that i was okay.

i already

felt

i was

revealing

too much.

then she asked if she could shake my hand.

i extended mine.

i think she witched me. (only half laughing).

i gleaned two things:

be aware when i am blunt when speaking to others (yeah i know) how it might be received.

we dont have to answer peoples questions when they are asked!

feel your belly.

and to be more in the moment in interactions so i can consider my responses

and not have them come on auto.

i did not want to shake her hand, i so did not.

i felt like it would be rude to politely decline.

at the cost of what?

yuck yuck yuck.

next time i WILL politely decline.

i smudged myself when i got home.

tonight is game night.

ps. if you are driving south on 23 and exit at willis road
there are like a million prarie smoke bushes in full glorious bloom on both the ramp.
peach to cherry to wine to blood to fushha magic.
its worth just the drive for reals.

xo.

she almost bit me this morning.

2016-06-06T23:10:00.002-04:00

people
dont
know
what
to
say
to
me.

i have become such a hermit.
i hate that cancer is so mystifying,

goodnight.
im going to go take my handful of night capsules.
i can swallow about 4-5 at a time like a giraffe.
ill send you a photo
you would gasp and waggle your eye parts.

c.

flowers of peas.

2016-06-04T22:35:00.001-04:00

i dont want to write right now.
the lamp above my head is stimulating hot flashes.
i can feel the titanium plate in my head.
just from lightly touching it in wonderment.
it feels inpenetratable. the continuation of my robot sheath.
i wish i would have sighened off on allowing photographs during my surgery
so i could peer into my brains.

health update:
healing from surgery. still tender.
i had one blast of radiation to the cavity where the tumor was.
they made this mesh yellow mask to trap my head inside.
after half an hour the back of my skull was in hysterics.

now that ive had three reoccurances im aproved to take olaparib.
which is what i started taking yesterday.
one months supply is $7000 i kid you not.
my copay was .69 cents
why?
here is some on olaparib:
AND a beautiful man named chandan kumar introduced to me by my dearest jenna is my angel forever.

Targeted therapy is the result of about 100 years of research dedicated to understanding the differences between cancer cells and normal cells. To date, cancer treatment has focused primarily on killing rapidly dividing cells because one feature of cancer cells is that they divide rapidly. Unfortunately, some of our normal cells divide rapidly too, causing multiple side effects.

Targeted therapy is about identifying other features of cancer cells. Scientists look for specific differences in the cancer cells and the normal cells. This information is used to create a targeted therapy to attack the cancer cells without damaging the normal cells, thus leading to fewer side effects. Each type of targeted therapy works a little bit differently but all interfere with the ability of the cancer cell to grow, divide, repair and/or communicate with other cells.

Olaparib is a targeted therapy. Olaparib is a poly (ADP-ribose) polymerase (PARP) enzyme inhibitor, including PARP1, PARP2, and PARP3. PARP enzymes are involved in DNA transcription, cell cycle regulation, and DNA repair. Olaparib is a potent oral PARP inhibitor which induces synthetic lethality in BRCA 1/2 deficient tumor cells through the formation of double-stranded DNA breaks which cannot be accurately repaired, which leads to disruption of cellular homeostasis and cell death.

other alternative therapies being looked into currently are:

introveinous high dose vitamin c therapy and immunotherapy (studies).

AND how am i going to support myself AND how will i continue to pay for these therapies once im officially divorced with will be soon AND what can i focus on besides all day every day self care AND how to stay calm while my daughter is whine-thrashing AND my parents so generously invested in a near infared sauna so we can all detox man (thank you mamapapa!) AND i dug the living poop out of the last boxwood in my yard this afternoon AND its hard sometimes and i still cry a lot but its less than before AND now when i cry im actually getting somewhere AND i miss co-parenting AND im lonely in my head AND thats all i got.

EXCEPT that i want to thank all of you who have been bringing amazingly delish food for me and hazel to eat. like right now i literally have a 20lb salmon in my fridge. bhahahahahah! you have all been so salmon-generous and kind and even when we are not hear you leave food presents on our porch and it really gives me a big break to not have to cook constantly and that is a blessing and luckily hazel will eat anything so that rocks. i love you all muwwwaaaaah!

gone to the beach. OR go bust from the city.

2016-06-04T22:09:00.005-04:00

my plan:
pack child and camping gear and some food.
sun hats. drawing pads. hammocks and blankets for naps.
hostplace: nordhouse dunes. summer things will happen.
2 week span.

what sparks joy.

2016-05-01T13:43:00.000-04:00

right now is creating terrariums.

and looking at terrariums.

and making them for my friends.

I got the urge because so many are offering help

to ask if anyone wanted to add some magic to my supply's and joy that way.

if you feel moved yay!!!!

if you are stretched I love you no worry!

shops in a2 w supplies:

English gardens

downtown home and g

pot and box.

michaels?

hobby lobby?

produce station for plants.

the things I could use in order from most desired to rad but not necessary are:

tiny plants. any kinds. succulents ferns flowering. I love hens and chicks varieties and ferns.

fairy tiny grabs. cool sticks or moss. rocks i can paint with my fantastic dexterity! animals or thingys. FOR YOU AUNTI BETH!

stones for the bottom. gentle colors. small bags for variation.

glass containers for the bases.

groovy dyed sand that's not gonna run or black or brown or something different. I'm open. small bags again are great.

if you are interested and want some photos of ideas send me an email.

artemisiat418@gmail.com

to creativity and healing.

sleeping intermittently with staples.

2016-04-30T04:26:00.000-04:00

the staples might hurt more than the scalp incision. I'm not sure.
it's hard to sleep when a big gentle black man wants to take my vitals at 3am.
it does help that he is gentle and kind indeed. it does.
pressure cuffs.
wrist iv's
cancelled plans for cancer retreats.
lots and lots of love.
looking forward to cuddles.
ot for my left arm and hand. and miracle status.
fresh salmon.
staying with mama Jenna forever.
praying on some trips with hazel.
it's all up to me.
that's beautiful and vastly wondering.
I watch animal planet.
I still want to be with horses.
I'm held by you I know it.
and again gratitude to my father for sharing beautifully
what I could not have reached.

c.

from my badass superpower pointpeeps.

2016-04-28T17:46:00.000-04:00

sign ups for support help:

chi support in hospital: https://docs.google.com/spreadsheets/d/10ERhJcbt0AcwtIPTKy80TvNL2lIhYCgfeCMY1qW4gEw/edit#gid=0

company, cuddles, and chi at home: http://vols.pt/Sosnfi

food: http://vols.pt/36ApRw

tidy help: http://vols.pt/Gjd8pi

update from my poet father.

2016-04-28T12:34:00.000-04:00

Blessings, Miracles, and Hazel

Today is the first day after Caryn’s surgery to remove a tumor manifest in her brain by the scourge of ovarian cancer. The images of so many moments from yesterday are filling my mind. By now, all of you, friends of ours, friends of Caryn’s, family, clergy, and medical miracle workers at the University of Michigan, know that it all ended well.

Ronnie and I did our best, texting, calling, to make sure that all of you who were sending hopes and prayers knew the outcome, as soon as possible. We wanted to do this as soon as we could, even as we waited to see Caryn in recovery, so that all of you who knew what was to take place yesterday, could begin to breathe again. For those of you reading this, for whom we somehow in our drained state, missed contacting, please, please forgive us.

The tumor, to all visible (and MRI) senses is gone. And perhaps even more important, Caryn retains all physical ability to function. That is no small outcome. As you all know, any tampering with the brain carries a significant risk that precious signals to the neural system may end up temporarily or permanently lost. If that were to happen, bodily functions, that we don’t even think about as we go on our daily lives, could be lost.

So today, one day after, I feel the need to let all of you know the full story of what took place yesterday. For those of you so inclined, our story of yesterday may serve as a reminder that higher powers do exist in the universe. Sometimes these powers are manifest in the skill of caregivers. Sometimes these powers give us strength in those difficult moments in our lives when we feel things can get no worse. For me, after yesterday, I will no longer have reason to doubt the presence of higher powers.

The procedure yesterday was a long one. Arrival at UM Mott Children’s Hospital was at 6:00 a.m. (Mott has the only surgery at UM equipped with MRI scanning capability, required during brain surgery). Prepping until about 9:00 a.m. Then surgery start. Word would not come of final results until shortly before 4:00 p.m, when Caryn’s surgeon, Dr. Daniel Orringer, would come out to report outcomes.

But 4:00 p.m. was not the first time Dr. Orringer would come out to talk to us. We were advised of the need to ‘consult’ at about 11:00 a.m. That was the only word we heard. Consult. Was Caryn o.k.? What happened that could be so dire that the surgeon needed to leave the surgery to talk to us? Ronnie, Bari, and I were scared. Tears flowed as we waited in the consult room for what seemed like an eternity for the doctor to appear.

Dr. Orringer was calm, measured, all business. What all of you reading this must first know is that before the actual process begins to remove a tumor in the brain, there is a “mapping” where precisely placed electrical signals are used to finds a path through brain tissue that will be the safest for access. Caryn is semi-awake through this (and through the entire surgery) so that she can respond to verbal instruction to move this or that part of her body. As she is able to perform these motions, the surgeon finds pathways least likely to affect life function.

Dr. Orringer came out to tell us that the path through the brain directly above the tumor controlled Caryn’s ability to move her left hand and possibly left arm. There was a high probability that she would lose all function at least in her left hand if the tumor was removed. The choice? Leave the tumor there, allowing it to wreak further debilitating damage in the future. Dr. Orringer had asked Caryn what she wanted him to do. She had told him to get it out. Dr. Orringer wanted to be sure we were ok with that choice too. We were, of course. Caryn herself wanted that.

We returned to the waiting room. Dr. Orringer returned to surgery. More tears. More hugging each other. More profound sadness. This beautiful, sweet daughter of ours, sister of Bari, mother of Hazel, had already endured so much in her young life. Two prior ovarian cancer occurrences. This was number three, in a region of her body that could not have tested her more. Not fair. For Caryn, so skilled in the use of her hands to create all manner of lovely things, how could she now face this new future? For those denying the existence of a higher power, here was certainly evidence.

The attentive lady at the desk saw the looks on our faces. She asked if she could summon a social worker to comfort us. No. Thank you. We have each other.

And I forgot to tell you something else. We had Hazel with us. Our dear friend Betsy was staying with Hazel while we were in the consult room. Caryn and Matt had always raised Hazel with love, sensitivity, and empowerment. The day before Caryn had asked Hazel if she wanted to go to school in the morning, or come to the hospital. Hazel wanted to be with her momma. So despite misgivings by some of us about Hazel’s ability to endure the long, emotional day, she came.

Thank goodness. As the difficult hours wore on, we were able to see Hazel smile, occasionally laugh, and have her to talk to us. When the day was ending, and we were all able to see Caryn in intensive care, it was Hazel who had the most energy, and wanted to see her momma one last time before we could all go home for needed sleep. Caryn had been so right. Someday, when Hazel is able to read this story, she will know how important a part she played in sustaining all of us.

We continued our waiting.

You may know that the UM has a pager system. The pager allows the staff to let you know where each patient is in the surgery process. Prep. Going in to surgery. Moving to recovery. That kind of stuff. The pagers can also be used by the surgical team to send messages.

At about 3:00 or so, our pager lit up with the following message that will forever remain with us.

It said, “All motor function intact. She is doing well.”

Intense hugging. Tears of joy. Did that really mean what we think it means? Will Caryn be able to have full use of her limbs after all?

Yes. That was what the message meant. Later in the consult room, when Dr. Orringer came out to fill us in, he had a bit of a smile on his face. He explained that sometimes, in strange ways, the miracle that is the human brain, is able to find new pathways to get around damaged tissue. Such was the case for Caryn. Her difficult decision was validated. All the detectable pieces of the tumor were gone. Hazel would get her momma back, able to do all the things mommas do.

So this was the part of yesterday’s story that you didn’t know, but I thought you should.

Certainly this positive outcome owes so much to the amazing talent and skill of Dr. Orringer and his staff.

But as for me, and perhaps you too, I will never, ever doubt the presence of higher, unexplainable powers.

My best to you all. And thank you again for all your thoughts and prayers. They helped too.

Stu

last minute courage or im not sleeping.

2016-04-27T03:40:00.000-04:00

the words of all these people who love me
you.
are absorbed.
by way of email, blog, text, messages, hugs chi. . .
are lifting my spirit.
renewing my faith in existence.
giving me peace that all is well.

i go into surgery in 4 hours.
drenched in golden light.
so much gratitude.
so many soft wings,

see you on the flip side.
(that means thursday).

c dog.

what i imagine at this time needing help with.

2016-04-25T21:37:00.001-04:00

okay.
so keep taking deep breaths.
my surgery was scheduled for may 3rd
and got moved up to this wednesday per my request.
because my arm is getting heavier and im starting to feel like im draging it around.
i could not put on my tank top after a bath with hazel just now.
i stamped my feet like an incessant child.
so tomorrow and then its a go.
i was thinking i had time to prepare myself emotionally.
if thats even possible.
the surgery im told is all day long. scheduled for 7:30am.
i will be in the hospital for a few days minimum.
i not a poet at all right now.

im scared of course yeah!
note this is not a brain tumor it is a brain metastasis.
its ovarian cancer in my brain.
which is apparently better than brain cancer cells.

so help.
emily griswold will still be my point person even though farm season is in full swing.
that is how much of a badass she is.
and she backups by the names of alison, kim, and emily. she will reach out when she needs.
when i know who this person is i will let you know email and phone and you will be able to contact directly and said person will coordinate.

meals
everything organic.
no sugar or any kind of sweetener.
no fruit.
no beans. red lentils great.
no soy.
no vinegar.
no white potatoes. sweets in moderation.
no cow dairy. goat okay in small amounts. almond cheese the best.
very few grains: quinoa. chinese forbidden black rice. oats. wild rice.

butter is great.
organic shiitakes sauted in butter or in soup i cant get enough of.
ask someone to fetch my dehydrated supply in cabinets above my kitchen stove!!
hormone free local meat products are great in moderation.
salmon is the best. 2-3 times a week great. canned salmon occasionally.
coconut milk (unsweetened) is great.
think chicken coconut curry with lots of veggies.

did i forget anything?

uh.

this is insane.

i definitely need touch massage cuddles.
help keeping my place tidy. its untidiness is my biggerst trigger right now.
company so i can be with hazel and not feel stressed.

i think food is probably most important right now.
ill get back with a point person.

i love you all.
caryn.