it was a dreamy asking.

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.

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.

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.

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

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.

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.

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

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.

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

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 

like 

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.

c.

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.

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.

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!

c.

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

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.

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. 

c. 

sleeping intermittently with staples.

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.

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.

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.

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.

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.

.

I have a brain tumor.
2-3 cm in the right side of my brain.
a CT scan while I was at the ER revealed that the cancer
is NOT in any other part of my body. ( chest or abdomen ).
if it was I would be considering myself toast.
so. that's good.
I'm very numb.
dr uppal had tears in his eyes dear man.
I really can feel the love with all of you reaching out.
thank you.
I'm not up to responding it's draining right now.
I do love you though.
please don't stop reaching out because I say this.
I need to feel you close.
I'm sure I will be asking for help.
in the time being I'm going to make terrariums.

c.

just like a miscarriage.

yeah so there really is no reason for me to be suffering alone over here.
that's what this is for.
my processing too.
you know how people get pregnant and they wait to tell their beloveds
until they feel the baby is going to keep?
you know what that does?
it means if they do miscarry they are absolutely alone in it.
nobody ever knew.

a week or so ago in Zumba I went to lift up my arms above my head
and noticed that my left one was lagging behind some.
in the days after when I reached out to grab something
my hand would move slower than my brain.
I saw my pcp on Tuesday and he tested my muscle strength
and my whole left side is weaker.
okay. and maybe just maybe my memory issues
are getting a little worse.
it's hard to say because it's really painful and I fixate on it a lot.
words seem a little harder to grasp for.

so tonight because u of m runs their MRI machines
24 hours a day I will be getting a head MRI at 1am.

I'm absolutely completely terrified I have a brain tumor.
I went right to the worst case scenario.
Maybe it's totally stupid I'm writing.
I don't want anyone to worry if it's a freak situation
and not a tumor.
I suppose I want to ask please pray for me.
Please pray for hazel.
Please pray for miracles.
Please pray for my family.
Please pray I'm clean.

c.

'twas not the time.

hey all you people who love.
i feel you there.
ive felt you wondering why no information com'ith.
i wondered too.
on friday night i ate some pot cookies and inadvertantly came to see why i had not written.
i was keeping myself under the rugs.
intentional solitary confinement.
i was teetering in and out of depression daily and deeply and wanting to be rescued and feeling hopeless and without mercy from spirit.
ive gotten so much perspective on why i depress and i did not want to chance drowning in there
from needing too much and too fiercely.
i had not been able to sense my intuitive knowing to be clear even what i wanted.
a very painful place to be.
im very vulnerable here, but that was not the kind of vulnerable i wanted to put out onto the winds.

this is one of my most favorite oil paintings i have ever seen.
its located at the u of m depression center. the people who hooted to put it there were very clever.
i feel happy when i look at it. i would like to take it off the wall and put it in my brains.



also there are things i want to write yet recoil from thinking someone might judge me or be uncomfortable or angry. it kinda sucks because im feeling lots of things and i really want support and some of the things i want support around involve other people and how our behaviors interact.



here is a photo of me in a very sheek pink sparkle wig.
if you are reminded at all of the cadence of kurt vonnegut's writing here i love you lots.
this is the only wig i will ever wear.
it matches the circles under my eyes.

what have i been up to?
well i had 25 sessions of radiation. it was okay. very surreal and that did not lessen with time.
i had lots of almost healthy debates with a dark haired very opiniated technician. he knew to put on the macklemore when it was my turn. i stopped changing into the hospital panys because i fuckin didnt want to. i did alot of visualizing of torrids dropping rainbow streams of light into my abdomen. my skin did not start to burn until the last week. it blistered and peeled right off. i got tired yet did not let myself nap because that did not seem so emotionally safe to me. AND i have been seriously crapping my brains out if you can even call it crap.



here is a photo of me rolling in puppies. except i did not really roll in them because there was poo in various places on the floor. thank you barb.

i made a trip to karmanos with my mom. the doctor i saw spoke really really fast it was kind of insane.
she basically said she will keep her eye out for studies for me. the current plan is that i will get a whole body CT scan around may 4th. the purpose of this is mostly to hopefully note that the cancer has not spread. i cant really think about how i might die even though its very important to greet that possibility and make peace with that possible reality so one can live with no fear. ive not been thinking about it instead im imagining the opposite. visualization is way more powerful than you could ever imagine. my main job right now is to cultivate presence and focus on my mental health. release things im holding onto. think about what i do want. if you ever have a real zaney fun adventure you want a chum to go on with you ask me! like if you are going to the redwoods or want to play with snakes or water ski. ask just ask. its living now.



this is me and auntie b and hazel. my sister and i reaching new levels of adoration. i love her.

its a lot.
i think now that bari and dan g. fixed my internets and i can walk like a duck i will be able to write more often and not need to do the catsup.


.

i will leave you with this amazing dog who will be 16 in july. today for the first time she got slippery on the wood floor and could not right herself. as if there was not enough pain already! its really sad and lonely to watch you best friend slowly fade. quin the super dog. she was once russet potato size in my hands out on the mesa. oh girl.

radiation

is
slated
to
begin
tomorrow
morning
at
9am.

please send light.

c.

just so you know X2

a bit more of explaining.

two questions were answered by the radiologist:
one was my desire to get a biopsy to confirm cancer in the nodes.
we looked at my scans together which provided outstanding context.
she showed me where the nodes are and how two little ones are near the surface
and the biggest one is right beside the original pee-squeezing tumor.
she said she is 90% sure the big one is cancer.
she said even if we biopsied one of the little ones and it can back negative
she would not believe it given the looks of the bigger node.
and that big one, its so far in it would be risky to biopsy.
number two is that i was really feeling concerned about the original tumor
and the chance that it may have seeded.
on the PET scan it is not showing itself
i was told though if its less than a centimeter it won't show up.
unsettling.
asking dr. uppal this is the way they do it.
you just can't know.
yuck.
i don't like that.
so this radiologist told me that because the 'tumor' and the node are right next to each other
we can point the big boom booms at the tumor too.
well that made me feel better.
git it gone.

like so many other happenings in my life
i am about to embark on doing something i never thought i would do.
I'm feeling good about it in my guts though.
a lot of white light will be going up in there.
i hope to be starting sometime next week.

lets talk about this more later:
how i want to acknowledge that it may be difficult for you to reach out to me.
lets talk about the uncomfortableness of disease and facing mortality.
cause i feel it effecting me.
and i want to be close to you.
and i want you to hold me sometimes.

c.

im so excited for radiation!

i know you think i am messing but I'm not.
i went in like a water bag thinking of my little girl.
how i was afraid she would forget me.
literally.
this has been what the last few weeks have been like.
(oh what a waste my parents have spent so much time fixing up this apartment!)
like that.
yet-
rebirth today.
hope renewed.
gratitude angels.

yes master kim.
context changes everything.

c.


for celebration some celebratory mugs of the last month's thingies.

still a waiting pause and thank you.

i'm waiting to hear back from my oncologist on many fronts.
its hard to wait.
master kim is helping me empty my brain.

i am very touched and feel wrapped in layers of light and hawaiian rainbows from so many of you.
when i fall into the pit i pull on visualizing that light.
i was wanting to respond to everyone personally
and i am feeling ashamed i have not been able to do so.
i want you all to know how much i want you round.
and i want to say thank you.
please stay around.
please know I'm absorbing your love.
imagine me peering into your eyes and a twinkle.
thank you for loving me.
c.

the very next day.

accupuncture 8:45.
i had an epiphany on the table while laying on my back.

10:15 dr bartolme.
new information.
so i have all along been giving myself injections of homeopathic mistletoe.
apparently these can cause inflammation in nodes.
so maybe those nodes are not cancerous. the report did say 'highly suspicious.'
dr. b. is going to speak with the radiologist to get the exact measures from the PET.
that will help him to know which side we are leaning on.
and we discussed the CAT I'm scheduled for this evening re the stone.
we concluded i could simply request the not very invasive surgery to remove it.
skip the CAT.
if it had been there since august as i suspect it has
it may be too big to pass.
and even if its not, lets just get it out cause i have lots on my plate here and
removing it would make it more apparent hopefully
where the pain I've been having is coming from.
i wrote to dr. hollingsworth and cancelled the kitty.

3:30 dr. lu.
total downer.
so did i mention before I'm one of those 5% wherein the cancer hides and
often cannot be detected?
not the kind of lotto i really want to win but okay god.
so dr. lu who is incredibly skilled
can not give me a clear diagnosis.
he does think the original tumor is still there
and that it may have seeded.
he said he was nervous.
and he looked nervous.
and i no likey.

7:30 jennas dear friends who are cancer biology researchers at the university
responded to my call by inviting me over and plying me with handmade indian food.
they are officially now angels of my way.
they agreed to help me find a patient advocate at the university,
and help me get an unofficial second opinion.
they have also agreed to try to get me into their current lab study
where they take tissue samples and analyze them to literal bits
to see if new information can be gleaned about the specific cancer.
and
they connected me with a site that has studies on a specific new drug
in the industry that has ben successful with many ovarian BRAC1 platen-sensitive cancers.
like mine.
its at carmanos, I'm going to check it out.

sometimes i feel like i might just have a couple years to live,
and I'm trying to be okay with that.
sometimes i think there will be a miracle.
sometimes i think the hard work i am doing on my patterns will pay off.
all i know is that i love my girl.
thats where all my eggs are.

please keep praying positive and if you can leave your comments on the blog proper.
then when i need a cheering squad everything will be in one place for me.
you all have been amazing sending your love.
its warming me up.
bless you.
c.

a new chapter.

i had an outoftouch feeling about this upcoming chemo.
i couldnt picture it inside my head.
i somehow knew it would not happen.
it didnt.
my white counts were not high enough to receive it.
that hardly mattered,
the 2 cancerous nodes have apparently become resistant against the chemo.
those nasty bastards.
dr. uppal recommends targeted radiation.
the thought of this makes me want to throw up in my mouth.
i really did not want this.

dr. miller and i had a chat.
we decided to transmute the death ray into a healing beam of pastel light.
that way i can do the radiation and it will be only helpful.
'be stupidly optimistic' he said. 'so much so that people think you are crazy.'

okay well game on there.

i have relented and decided to get the recommended CAT scan to determine the kidney stone size.
that way once its out we can hone in closer to what is causing my lower back pain.
(i do believe the stone been sitting there since late august).

tomorrow:
accupuncture at 8:45
appt w/ dr. bartolome at 10:15
appt w/ dr. lu 3:30pm
CAT scan at 5:30pm

if you want to surprise me with a litter of puppies i can roll in in between any of that
please please seek me out.

c.

oh and if you want to send chi or healing loveness please to make it positive in its intention
instead of angry or scared or dark. i would so very much appreciate.

cram it all in there OR suspended in jello.

I relent I have strayed.
it's been difficult to write.
I feel like someone is watching me.
it's the watching that causes me to fold inside myself.
hide my real beauty.

this will now here be an old fashioned solid update.

so peewee came out.
some days later I noticed some lower back pain.
some back pain that reminded me a lot of sciatica.
actually it felt like a lesser intensity of the pain I had had that got me re-diagnosed.
but I knew that pain.
i've also continued to have pain in my groin around the area where the tumor is located.

I contacted Dr. Uppal and gave him all this information.
he replied by ordering a PET scan a complete CBC and a urine test.
oh and an ultrasound of my kidneys!
yeah I wass shitting a brick too.
so today being Tuesday all that is done.

I was supposed to get the PET results the day after
yet I'm still waiting.
oh and they did enter them into my records so I CAN read the results online
even though I CANT UNDERSTAND THEM!
I can understand just enough to freak the fuck out of myself. excuse me.
part of the reasons I'm waiting is because I realized I don't want to get the results of these critically important tests from someone who doesn't know my case and doesn't know me. I'm so emotionally and energetically sensitive that I know it would be far more upsetting to me to get results that were not translated correctly for me from someone I don't know than to just wait until I can see Dr.Uppal on Thursday when I'm scheduled for chemo. not to mention that sometimes the PAs translate the information to sound completely different than Dr. Uppals take.

I was able to understand the results put into my record regarding the kidney ultrasound:

so she hung out for a long time there on my bladder and I started to get really nervous.
when she finished she said she had to go talk to the radiologist to make sure she got all the information that was needed. That's the same statement that said to me when I originally got diagnosed with cancer in 2013. So then Im crazy nervous. Basically for a good 20 minutes,
10 on my bladder and 10 waiting in the room with my friend Kate I convinced myself that I must have bladder cancer and I started bawling my eyes out.
mostly thinking about my baby girl.

The tech bless her gentle heart saw my distress and told me that she didn't see anything that looked off with the ultrasound. she is an angel forever to me.
she also told me that I have a kidney stone in my left ureter very close to the connection with my bladder.

so I went home and studied up a bit about kidney stones.
pain as intense as childbirth is what people seemed really jazzed about saying.
I don't remember if I told you this but the pain I had back in August of last year that ended up getting me diagnosed with reoccurring cancer went like this:
I couldn't speak.
I couldn't move.
my dear friend Kirry who was performing a concert in Taos had to leave that concert at break and drive me back to her house I was in so much pain. There was no way I could even get to the hospital. Excruciating pain in my left groin I was writhing. once I got re-diagnosed it took me a while to remember that incident actually but I thought it was the cancer paining me.
now I'm convinced it was a kidney stone passing from my kidney through my left ureter.

yet another CT scan has been ordered for me because of this kidney stone.
why don't they just chop me up into little pieces and put me on a slide?
now I have all these questions that I'm waiting to get answered.
could the kidney stone at the end of my ureter be what actually caused my kidney dysfunction as opposed to the tumor? Has the pain been the kidney stone this whole time? Apparently stones are supposed to pass within a few days but if if what I'm feeling is correct I've had this kidney stone
since august of last year! for now im going to refuse the CT. flippant.

tomorrow is chemo # 7
tomorrow i talk to dr. uppal and hopefully there is clarity up in there.

c.