the day after.

i took myself out to the garden today. i used to pull many little weeds that i leave to sit now. like yellow dock and evening prim. chickweed and wild berry to transplant. time to care for myself when i dawn (oh) that is way i have been unable to breathe. only certain things really matter. master kim says for me those two are 1. my health 2. relationship. i think I'm still in the initial shock from the mammogram callback. i visualize the gash in my breast. there is no cancer inside. thank the goddess.

waiting 1 day.

writing has been hard.

i think about it.

i dont do it.

i decided on the surgical biopsy,

and had that yesterday.

the results should be back tomorrow.

it has to be nothing.

it just has to be.

i had a redo

birthday the day after my own.
a whole bunch of my favorite people in all the world
gathered up at the rollerskating rink in brighton
and we has more fun than fun.
really, i think I'm healing my middle school trauma of never being asked to dance/skate with a boy.
hazel was so great, she totally did not need us at all,
she small-step-skated for hours.
we wore sequined headbands because it was a flashback to the 80's.

my fear/anger/terror is shifting.
this is something i just have to get through.
and i know i will be okay.

i have to choose between two different biopsy options. both done in an MRI machine.
nothing showed up on the mammograms or on the ultrasound, which is good.
but there is now way to know if its benign thus needles in my boob.
(for me that is the scariest part as the analgesic shot they gave me to remove my port
was one of the most painful things i have ever experienced.

yesterday was sunday and matt was off burning.
hazel and i went to dance church off huron.
complete total bliss. her shirt off, running sticking' out her round belly in a little pink ballet shirt.
girl is in her body.
i went in feeling such despair and isolation and fear/sadness.
and DEAR CARLA i came out breathing and in love.
dance is my heart tool now.
its really deep and i don't know that you can understand unless it is yours too.
it rocks my world.
and has introduced me to still a new community of dearest loved ones.

after nap we went out to the medicinal garden to get all dirty with the mother
and pull up the duff to greet the little babies.
hazel is finally in a place where we can be outside and play or not play together
yet i can be fully immersed in my plant passion
and often she is right beside me.

today i taught her how to talk to the plants if she wants to glean from them.
to ask permission and listen closely for the answer.

before

i go to bed i want to thank all of you for the lovely birthday wishes.

i request a do-over though.

just to let you know when i went to get an ultrasound today and subsequent mammograms
the technician tried to tell me that she was going to take an image of my left breast.

i told her it was my right.

she left the room.

she came back and told me yes, it was my right.

thank you.

someone had transcribed it wrong.

whoops! no big deal.

fuck everything. (x rated potty mouth post).

of course i did not write when i was dancing high and full.
when i completed my stunning new doula website.
when new photos of my products were shot.
when the dance continued and filled all those in it with love and connectedness.

guess what i get for my birthday?

a fucking inconclusive MRI.
taken tuesday (100mg of benadryl is way too much) and receptionist who told me the tube was completely closed and i would be in it for an hour which is why i took the benadryl, hey receptionist:
FUCK YOU. get your shit straight! this is my life you are misinforming.
benadryl left me shaky through until the end of wednesday.

i woke from a nap with hazel today and found a message from 'the university of michigan' could i please return the call. seriously? that is all you are going to say and you expect me to call you back? how about what department you are calling from? how about what it is concerning?

the woman says the technician wants me to return for an ultrasound. further testing.
that is enough to freak my shit out. why? i ask. oh we can't tell you that.
ARE YOU FUCKING SERIOUS? i might have even said that.
so would you like to schedule your ultrasound right now?
you are going to call a very recently healthy cancer survivor and tell her that she needs further testing and not tell her why? no i don't want to schedule a fucking ultrasound. click.

i phone my PCP. i speak to a nurse after breaking down crying to the male receptionist. actually i really need to speak to a nurse RIGHT NOW i can't wait for someone to call me back.

nurse reads the MRI report. its taking way to long for her to read it and i am getting near hysterical.
hysterical hysterectomy. I've been there.
so there is a non-mass enhancement in my right breast.
please nurse, what is a non-mass enhancement?
oh you DONT FUCKING KNOW? this is awesome. the fucking medical community really knows how to respect me in my time of need. oh my doctor will call me back? today? you think so? i need to talk to her today, this is ridiculous. its my birthday tomorrow. . . happy fucking birthday to me huh?

while waiting for my PCP to call the office of my oncologist called about scheduling an ultrasound
AND a mammogram. i had a mammogram a few months ago. are you sure? the imaging people told me just an ultrasound. whats that you say? anytime you have a mass you need to. . . oh I'm going to cut you off there. is it your first day? its a NON-MASS. are you looking at my chart. its a NON-MASS, not a mass. it my life a joke to you? do you think you could read my fucking chart before you call me?

PCP calls. no new information. does not put me at ease at all about if i should be concerned or not.
a non-mass means it is not a clearly outlined mass. its more foggy like a shadow. I'm mot sure if this is better or worse.

fuck my genes.

happy birthday ultrasound scheduled for tomorrow.

i think

i think i heard hazel say
when she peeled up the piece of hot pink
duct tape
from her
perfect peachy arm
"i have some chemo under here."

focus in.

i must explain a bit further why i call out.
when i say i am lonely,
please know that in my everyday existence
i am expanding and am connected
and am soaking into all the love i receive.
i am not lonely always.

i am lonely when i think of my cancer.
the moment in comes to mind
i see a shadow version of myself sinking down
a deep long grey/black tunnel.
i am totally alone in this place
with flashes of vivid horrible memories
and my missing insides
and drifting in and out of a morphine daze
with feelings i don't yet understand
and no one to be so present with me like i desire.

that presence is in my mind exactly how i imagine it.

i frequently hit a wall expecting matt to fill this role
but he cannot.
and does not.
its craving women compassion.

because though you see me well, it will never be done.

i have chosen to recreate my university care-pages blog in a new crispy form.
because often i feel alone.
still dealing with the disfigurement.
the loss.
the fear.
the timelessness.
the anger.
the pity.
the out-of-body ride.

i think of you.
you whom gave so freely of your love in 2013.
have you filled the space i rested in in your mind with something new?
i realize i still need you.
my body is free of cancer today.
but it is still pulsing with poison.
debilitating tendonitis.
and tales of intestinal woe.

ive come to an alone place after a long time of knowing
so deeply the love of my community.
should i seek now only the company of strangers who have also survived cancer?

i ask still for your prayers.
i have much to tell.

please visit me here.

its not that nothing has happened.

lots has happened. ive spent too much time cast between sharing it because i have been, sharing it because i need to do so for myself, and not sharing it because it is freak freak freaky. ugh. im here now. some much needed alone time while matt and h are on lake michigan with his family. i spent most of yesterday outside planting in the 2 medicinal gardens and the veg. surprised at how strong i felt after not feeling strong for so long.

my last chemo was may 16th. it was the hardest yet either for accumulative reasons or because i didnt have the right nausea meds the day after. it was a long week of sadness and discomfort. dr liu wants me to go every 4 weeks now because i got sent home for low counts again before the 16th. lots of nupagin, lots of frustration. grief put away pouring out only because it managed to find a tiny hole in my shields. in late april i had an unexpected surgery because the cuff that was sewn at the top of my vagina after my uterus was removed opened up and when i sat down to pee one sunday my intestines came out. yeah. holy **** it is. i was home alone and dialed for help from a friend and an ambulance while simultaneously holding my intestines in. yeah it sucked but i laughed about it once i got to the emergency room because it was the only way i knew how to deal. how did this happen? yes.
later i cried. cried cried. sometimes i feel like a robot-body. it and out the parts and in and out the poison and a big freaking painful port on my chest that bulges out because i have no upper body fat. it was a couple weeks of poor caryn. poor poor caryn feeling sorry for myself.
in early may i got the results of my genetic testing back. what i knew already was true. i have the BRAC1 gene. as does my mother. my sister does not. this means 2 things for me. one i will have to be monitored for breast cancer every 6 months for the rest of my life.
two hazel has a 50% chance of also carrying the gene.

matt continues to be exhausted of having a sick wife.
sometimes i dont know why he stays.
i realized that we have gone from help with meals after hazel was born to meals when i had ppd to meals now when i have cancer almost seamlessly.
what a blessing to have friends.
what a tragic 3 years for me.
except for hazel. the best thing that has ever come to be in my life.

tomorrow

three open visiting spaces!

http://doodle.com/s3fnsn7vazxzxaaw

thank you beloveds for a lovely pretend birthday yesterday.

wet lil rain-coated toddlers.
a bounty of olives.
sun and rain.
nappin quin.
waffles with yoghurt and blueberry sauce.
a soft pillow.
pretty things from sweetness.
time alone.
corned beef zing with russian dressing.
a quick end to a burn day for matt.
puddles to jump in.
roasted dandelion root tea.
love by hugs.

white counts good i pray.

c.

words written for you and read on october 5th.

im feeling reflective

im feeling shy
im looking back on my life
with all of you in it
and im seeing the times when we came together
when our hearts were most open
or willing or weeping
and look at all of you here listening to me
eyes shiny and still
i love you all dearly
you fill up my life
tender-hearted
you have given to me
to my husband, my daughter, my parents, my sister. . .
wait no-
gratitude is for you too
my blood family
my chosen love and our light

if i were a tree youve been stones all around me
stone people who carry wisdom and know of the calm
stones that also sometimes splinter and crack and
weep and weep and weep and
all of you here and some of you far away
my beloveds

who sat beside my all day chair
who answered my phone calls of indecipherable panic
who shared your own brave stories
who fed us, who fed us with such goodness
who stayed with me when i feared to be alone
who danced with me when i had just enough courage
who kept their vows
who wrote to me with such generous encouragement
who loved my daughter when i feared i could not give her enough

but i was wrong
it did not matter and she is the proof
i sat watching her one day at a friends home
playing with my friends daughter
while i sat bundled on the cement front walk
too tired
and belly sick to be present with her
i watched her
and i could see she was happy
strong in her body
confident, wild
and i realized
she had absolutely no idea i was sick

i mean she knew
she had seen my skin ghostly white after surgery
but she kissed my face anyway
she knew i spent a lot of time at the hospital
getting medicine i told her, getting medicine
she knew i yelled out in pain when she jumped on my belly
but
she wanted for nothing
she had everything she needed
not just food and shelter and paper and crayons
love
she had so much **** love
she did not feel a loss
she was full
and i am inconceivably thankful.

to all of you
thank you from the bowls of my being
my blood and my bones and my skin
there will never be enough thanks i can give you
every single one of you
for all you have offered to me
thank you for giving me the space to heal
you are shining lights i will keep inside me always
you are the proof of the importance of community
i knew it all along
but never so great could i have imagined the power

please know you have held me
and that i was aware in that moment
that i was being held

-----------

my lovely generous mama has cooked to feed us all
when i was young she told me this was how she showed her love for us
in her food
she put her love in the food

please eat and be merry!
talk bounce laugh and be
you are all connected by my love
so already you can love one the other

i adore you all
i always will

by not writing.

i avoided the roller coaster of emotions experienced between then and now.

everything i had pushed down emotionally to function on all realms
started to seep up after i was called cancer free.
dr lu, my savior in words, told me most people going through remission get depressed.
i was not alone, but i was scared for obvious reasons.
he needs me to keep pushing forward and get well he says.
now is not the time to process old wounds.
okay.
so i am doing that working now.

AND
hazel and i are headed off to the lama foundation in northern new mexico tomorrow morning!
we will take the train through chicago and end up in lamy nm sunday at 2:30.
spend some time with new friends from last summer in pilar for a few days
and then head up the mountain in time for shabbat on friday night.

we will be away from michigan for 2 to 3 weeks, depending how i do with my strength.
friends on the mountain have already volunteered to help out with hazel.

hazel will turn 3 on the mountain!
we will probably spend a good part of the afternoon running around in circles inside the dome
as we did last year for her 2nd birthday.

we will be out of e-mail contact
but will be able to check messages and texts by phone.

yey! we are so excited!
i love to share this place with my daughter.
it is the blessing i get at this time,
i will take it.

c.

on second thought.

you are right diana.

i wanted dr liu to tell me i was all good.
that the cancer was gone.
that i was in the clear.
she smiled (because she is used to me egging her),
and said "you are in remission."
she wouldnt say it.

so why can't i?

is it like taking away the power of a birthing mama
by telling her she was delivered of a healthy child?
instead of the truth?
that SHE pushed that baby out with all of her power and might?

I AM CANCER FREE!!!!!!!!!!!!!!

maybe now i can celebrate more deeply.
let go of that last bit of fear,
because it does me no good to hang onto it.

thank you friend.

remission.

today dr liu brought the news that last weeks CT scan came up clear.

remind me how to breathe?
this whole illness has ben a dream i cant relate to.
i still feel like i have not processed most of what it has brought.
this too, i told a friend that i feel like i am not connected to the earth.
im literally floating 2 inches above it.
i miss my feet on the ground.

matt and bari and i went out for breakfast at fancy zola's after my visit.
there was a texting frenzy and some turkish eggs.

i have been so very deeply touched by the prayers and kindness and love you have all shown me.
i started to cry last night when i read that an old friend was praying for me with her girlfriend
and a circle of friends in st louis. because i know she really was. that is her way. i know she was not just taking a minute, she was taking many and if i stood really still i could feel what was sent.
so many of you have told me that you have been praying for me and i believe every single one of you.
its hard to take that in sometimes. i feel more blessed by the love of my family and community than i can ever put words to. i cant touch it.

after the news today i felt like i wanted to have a private party with each one of you.
sipping tea, gentle music, cuddles and light in our eyes.

i told hazel in the simple words we have shared about this
and she scrunched up her nose and grinned.
bringing her little paws up beside her cheeks like a squirrel,
she does this when she gets excited.
this child is zest.

i am getting my port taken out in 7 days.
i see not reason to cling to 'just in case.'

gratitude gratitude.
caryn.

another tomorrow.

i get my CT scan results tomorrow morning.

it has been a hard week waiting for the rest of my life.
i have been trying to take it really easy as dr lu says i must.
its a short update,
but im asking that you visualize for me a body free of cancer cells.
sparkly clean

caryn..

home.

i am.
no longer neutropenic.
2.3 today.
the air is cool.
and at this moment i am not having a hot flash.
bliss.

yeah I don't know why I am up either.

I am so very deeply touched by those of you offering to be my stand-in family. clearly you already are. I am blessed beyond the beyond. I meant what I said when I wrote that my friends are the best. because Marianne was with me at the ER until I went zzzzzzzz and back the next morning and feeding Quinny at my house and her cats at her house. Tina agreed to take hazel in seconds even though one of her homeschooled eldest daughters was preparing to leave the country the next day. she fed and clothed hazel (because I forgot to pack clothes) and even provided the morning cuddles the next day that hazel requires and really anyone would be a fool to turn down. how beautiful are these angels in my life? really, even though all my blood family was out of town- I was confident and gracious knowing I would still be blessed with care from my heartfamily.

bari turned around in her tracks and came back from the cabin because that is the kind of sister she is. i told her she did not need to, that I had the care I needed, but she said, "no really I will see you in the morning."

matt returned from his men's-group-goes-a-camping trip (yes my husband is that groovily advanced) at 10pm last night and got right into his truck without even going inside to show up at my room here.

this mom and dad, is why you should truly believe me that you do not need to return early from your vacation.
cant you feel it in your heart?

WE have it covered.

special thanks to the frita batitas party crew: jenna bari grace and Elliot
m.a.: my other sister, the rabbi even said so
tina: the queen goddess of hazels second family
bari: my devoted sister
and all of you who have offered to help so truly that if I needed company I really would call you: Sandra Lorraine alison kate sheri Carisa heather pat Elissa grace

I love love all or you.

seriously? or it's so good to know you have friends.

title dedicated to Kurt Vonnegut

I'm in the hospital again.
I came to the ER early evening Saturday with a temp of 102.6
which I only took because my friend Marianne asked me if I had taken it
I had not
hot flashes can in fact can be confused with a temp
if you are out of your mind hot cold hot cold in the only air conditioned room in the house
not sleeping not sleeping belly muscles sore from water slides
throbbing headache and possibly a broken toe?
no

they say I have pneumonia
and at admittance I had no symptoms
because my white counts are so low they cannot work to create symptoms
can you wrap your head around that?
now I am developing those symptoms
painful deep breaths.
feels like my ribs are broken.
my whites are at 0.3 or something ungodly

matt is camping in the dunes
my parents are in Chicago and Pennsylvania
bari is at the cabin
sarah is camping
all my immediate family gone
same situation as the fun intestine adventure

that is why I say it is good to have friends
mine are the best

a fine choice.

on monday.

off to the ER for iv fluids.
after beloved mama jenna fortified me
with coconut water
salty potatoes
and lemon honey water.
i dozed in and out of a finagrin daze.
this heat is oppressive.
this no air-conditioned **** hot flashing heat.
matt came to sit beside me.
ever giving.
ever loving.
ever understanding.
a stunning father to my hazel.

who told me that while she is at bubbe's today
she will pick me a BIG box of blueberries.
for us to share.
she will tie it up with a bow.
a blue one.
a pink one.
a green and a red one.
then we will rip it off and eat them allllllllllllllll!

one day post infusion 6 (the last).

i do lapse between updates. i do i do.

everyone askes me if i am so excited.
so happy to be finished with my chemotherapy.
done! done!
why do i not feel as excited at they do?
in the beginning i imagined i would.
i feel dull. in a cloudy haze of limbo.
will i feel better one i get my first CT scan in three weeks
and it comes back clean?
i think so.
i need therapy.
i am now being referred to the breast cancer and genetic counseling
divisions of the u of m oncology department.
to deal with the BRAC1 aspect of my heredity.
the part that now effects my breasts even though my uterus and ovaries are gone.
dr lui. will not see me for this new phase.
she will continue to see me for routine check ups.
she said that my CA125 has been such a good marker for me that
we can test it alone at return visits along with a physical exam
and hold off on more CT scans unless they become necessary.
currently my CA125 is 3!
that feels like good news.
i adore dr rebecca liu.
bari says i entertain her, amuse her, i am a happy challenge to her schedule.
i always make her laugh.
its nice.

what do you want to know?
ill write more later.

the day after and some good numbers.

sorry for the confusion.

i ended up switching my chemo to thursday so i could see dr. liu on her only day in clinic. because my white counts were too low last week she wants me to wait 4 weeks until my next infusion to give my whites time to come up.
she also sent me home with three shots of neupogen to help that process. each shot costs about 300$ thank you university of michigan M support for continuing to pick up the bill for me. on a good note my CA125 (a blood test used to measure the amount of cancer in your body- which by the way is considered to be an inaccurate test) was 471.8 before my surgery, and 52.9 after. following my first infusion my CA125 came down to 7.1. dr. liu said it wont come down any more, that these results after one bout of chemo are absolutely amazing. even after two infusions it would still be considered miraculous. but, and i did ask her, i do have to follow up the course and get 4 more treatments.

my next chemo is on my 37th birthday. my dearest melissa has set up a really sweet chart so you can come visit me if you like. you can find it at
http://doodle.com/s3fnsn7vazxzxaaw

they switched up my pre-chemo anti-nausea drugs this time. not much upset to speak of. strangly im having an unsettling feeling about it. melissa had a good analogy. its like getting an epidural for chemo. im going through it and part of me feels like i should be experiencing it more. im covered in bandaids. never been a fan of them.

chemo birthday fun 4/18/13.

Hi! Melissa again. I just created a scheduling Doodle for you to sign up and visit Caryn during her birthday chemo. Please go to this link:

http://doodle.com/s3fnsn7vazxzxaaw

and fill out the time you can stop by for 15 minutes and click Save when you're done. I'll send out a schedule to everyone or update here once it is filled up. Two more things to be aware of - One, IF Caryn shows up, gets her blood test and can't have chemo that day, then I will update this page so if you are signed up to visit, please check this page before you come to the hospital. Two, if you are feeling sick at all, whatsoever, please send your love in an email or through this carepage but do not come for a visit. Thanks!

Melissa

update 3/21/13

This is Melissa, hacking into Caryn's account. Happy spring everyone (as snow flurries outside)! I am here with sweet Caryn at chemo round 2. After eating some delicious lunch from Chela's and then Caryn's favorite part of chemo, the massive dosage of Benadryl that makes her feel sky high, Caryn is snoozing right now and she asked me to write this update. She was super pumped up for chemo today and her neutrophil and white blood count was cooperating so it was a go! A nice volunteer was already by and had a cart of goodies so Caryn now has a new green knit hat and also what she is calling her doo-rag. It'll be nice this summer cause it's like a think red and white gingham cotton. She also found out some good news from Dr. Liu- her CA-125 count is down more than expected (she'll have to tell you the numbers herself). That is very exciting. The not so fun news is that her next chemo is scheduled on her birthday, April 18th. I personally think we should have a party on Wednesday the 17th with some delicious food, good friends and family. But Caryn also wants a lot of friends to stop by and bring her goodies and treats during chemo on the 18th. There can only be 1 person back with her at a time so should we have a schedule where different friends and family can sign up so not everyone overlaps, or just let it happen organically? I'm gonna go but I'll post some pictures. The first is a few minutes after her Benadryl was administered and the second is of Caryn blessing the chemo before infusion. Hope you are all having a wonderful day!

--Melissa

never forget to advocate with grace.

i got sent home from my chemo appointment yesterday.

no, it was not because of poor behavior,
i was a perfect lady.
my absolute neutrophil count was low,
an element of my complete white blood cell count.

this was disappointing on many levels.
once chemotherapy is begun, its common to want to get it done with.
more though the emotional preparation it took to get there.
asking my parents to take hazel, packing of multiple bags full with snacks, magic charms, i pod, clothing that gives easy access to port by way of wide neckline, ball of sunshine, sister in tow, on and on.

we quelled our sorrows by going to the community cancer center
for a free yoga class. actually quite nice. pretty amazing place.
and then to michaels craft store to hoard earring findings and beads.

i got home so crabby matt and i got in bed for a nap and after asking my parents to keep hazel for the night (a super treat for her) we slept until 6:30pm.

the advocacy?
get this.
last week when i did not get chemo because i was sick, i did get a blood draw and see dr liu.
this week i was instructed by her
and received a reminder print-out that i should arrive at 8am for my blood draw and 9am for my infusion.
when i arrived at the lab they did not have a req for my draw.
what they did have was a piece of paper that read
'dr liu says to use the lab report from last week"
naturally i did not feel comfortable with this.
i know my levels can change quickly and that there was no way i could count on them being the same as last week.
it took me a little while to convince the staff that even though their piece of paper said i did not need a drew did in fact need one.
so they paged a doctor,
and i called up to the oncology department.
eventually i got my req.
this took about an hour.

the kicker?
last week my NEUT was 3.2, healthy range is 1.5-7.2
this week it was 1.3
the receptionist told me it was too low to do chemo.
in fact it was quite dangerous.
one could end up in the hospital (where i already was but you understand)
for receiving chemo on top of such low counts.

you make the connection.

p.s. will someone else write an update for me?

caryn.

grrrrrrrrrrr.

infusion #2

postponed
until
next
thursday
due to
illness
caught
from lovely
blameless
daughter.

painful sore throat and ears + hot flashes = complete misery.

up late with side effects.

i cant sleep so well since my surgery, or my first chemo, im not sure which.

im laying my bets on the surgically induced menopause, but matt is not convinced. either way it sucks. ive always been such a good sleeper, or up late at night i had the energy to get things done and now i have only a strange anxiety/caged feeling i cant quite explain.
im gonna lay on some melatonin tonight you bet.

my next infusion is in six days. my hair started to come loose almost two weeks to the date after session one. i had an obsessive trichotillomania moment in the car and when i got home matt told me the top of my head looked like an old lady and i freaked and had him go get the buzzer.
hazel helped. i really wanted her to be there for it.
she keeps saying now, 'mamma hair gonna come back.'

speaking of the so brave little one, she threw up yesterday three times starting around four and so we had bubi and saba come pick her up as i am supposed to closely guard my immune system. word is she threw up four more times today and is completely lethargic and napish. i bring this up because every time she vomits she does it ever so calmly with no tears or shock. sometimes telling us just before. . . and ALWAYS after saying, 'im okay im okay.' it hurts to not be with her right now. im missing her sicky cuddle time so precious to a mothers arms.

its only been a month and a half since i was diagnosed. i see hanging in the back of my head all the things i have not yet mourned because the time is just not there. there is no space for these tears now as positivity has to push them out. im going through menopause. that alone is devastating.
i cannot have another baby, dont get me started. i have no uterus or ovaries and i am a freaking birth doula! i will not bleed anymore (i am the kind of animal who praises this time). really i have spent the past two years in grief and loss. take me here and i will remind you that i had to stop breast feeding hazel when she was ten months old. im absolutely sure this took my already frightful postpartum depression to a deeper dark dark hole.

for now though i feel pretty good. i think i like my shaved head. people keep telling me i look so much better than the last time they saw me.

i still owe all my gratitude to dr lu (the accupuncturist one)
he said, 'you are really healthy! you just have cancer.'

little hazelnut rest deep and soft and come home soon.

tuesday

this morning in bed i told hazel

the medicine the hospital will put in my port
(we have been talking)
will make mama's hair go away.
i told her we were going to shave mama's head soon.
did she want to help?
yeeeeeeeahhhhh!
i dont her i would look different.
she said, goddess bless her spirit. . .
papa different.
aunt b different.
bubi different. . .
how in the?

two days post.

my sister and my aunt beth took hazel in her white fluff tu tu to kroger because all i feel like eating is annie's macaroni in a box. i forgot how much nausea sucks. its real hard gettin the calories in over here.

matt just had to carry me back from a walk in the field because i was so light headed. yuck. i feel so sad matt has to go through this again. the house always a mess of stuff, things coming in, food to freeze, doing EVERYTHING, no space to himself because of all the people who come. which i can totally understand but my need for these people is more important than his angst. i love you matty and you are being wonderful and im so sorry you have to take on the weight of things again when you thought you were almost at a point of recovery.

hazel said 'perhaps i can have some tea'
we have to figure out a way to explain my health to her now, its lasted too long and she's getting mad.

two angel doctors came into my life.
dr. jay sandweiss
and dr lu the chinese acupuncture/herbal savant.

dr lu in one meeting broke my fear and helped me help myself turn it into life.
im getting tired of writing.

chemo was fine. i even had fun. matt and melissa and heather to support me.
the benadryl made me high as a kite.
no negative drug reactions.

yesterday and today
nautious
sensitive skin
achey body
tired

FOR alison 5 good things today

my aunt beth is here
hazel's dress has turned into a shirt and her tush is so cute
going outside
taking a nap
macaroni soon?

now im not sure i can do it.

the update i mean.

matt is in the kitchen making me a bagel after i just cried all over myself post watching the last episode of season two of downton abbey.
i still cant accept this.
will i ever?
maybe its like giving birth to a beautiful child and loving them so deeply and seeing the miracle and thinking, 'i just cant understand this beauty maybe i will later'. . . and you ask a mother with an older child and she says 'no you never do, you never will understand.'
except they cut out my ovaries and my uterus and my eggs were all rotten and i was just getting up the courage to that possibly i could have another child and now i cant ever ever and im a really good momma, i really am.
im really mad. and im really feeling sorry for me.

today we met with dr. liu and asked her an exceedingly large amount of questions. i like her very much. although she cant promise me anything and i wish she could. i wish i had magic powers on that note.

we ended up spending three and a half hours at the hospital in the end, waiting, seeing a chemo scheduling nurse, and getting blood drawn.
oddly enough dr. liu finds much alignment with the mcmullens (the anthroposophical / steiner doctors in town. . .i have an appointment.

we cancelled our therapy per exhaustion and later met with my dear friend jim mcdonald. topics mostly concerning bone broth, supplements and mushrooms, specifically turkey tail.

my chemo is scheduled for the 14th at 8:15 in the morning.
an all day ordeal.
im terrified.
im terrified.
im terrified.

all i can think of is hazel really.
she is growing and changing so fast and i miss our intimate time together.
all i can think of is hazel because i want to be here for her.
she is the most special being in the world.

thank you though.
for all your gifts and cards in the mail, magic potions, mermaids, prayer blankets, juice fairies, food delivered, flowers, beyond kind words and courageous trust.

and time spent.
dearest sister.
selfless husband.
willing parents.

oh and quin. for spooning me the other night even though you do not like to cuddle.

good 'ol girl.

affirmed thoughts from bari.

you're never too old to lie in your father's lap, sob on your mother's shoulder or spoon your sister

i no longer believe everything happens for a reason

the unknown is more terrifying than reality

crying is a sign of strength

hospital food is only a skosh better than airplane food

nurses are selflessly devoted caring beings

my sister's strength, courage, humor and insight displayed the past couple weeks is what has kept me going

it helps to have friends in high places

there is nothing heavier than compassion

the i love lucy show was and still is brilliant

the body is remarkable and knows how to heal itself

a smile from a stranger goes a long long way

lack of control is overwhelming and powerless

my sister is beyond blessed to have the warmest, most generous, uplifting and supporting community of friends

the breath is healing

i love my sister to infinity and wish this was all a bad dream

we don't have the power to make life fair, but we do have the ability to make it joyful

one must turn on the dryer if the goal is to dry ones clothes

hope is faith

my parents are magical

it's impossible to OD on "I Love You's"

cancer sucks

there is nowhere in the world i'd rather be right now than with my sister

silver ponies and stickers make everything better

LOVE SISTER B

juice.

Today Caryn wakes up next to the fire which is burning slowly and Matt puts on his boots to fill it back up with woood. Woooosh, the orange flames are beautiful through the glass.

Caryn's momma "bubbie" arrives and we're reading a story to Hazel while watching the boy cardinals And the girl cardinals out the window.

We are drinking juice to fill the body with nutrients and take it easy on the digestive system for breakfast (a few nibblets of buckwheat sunflower cake). We're gonna make juice a regular part of the routine, oh and get some kefir cultures and a bunch of coconuts to make a brew of young coconut kefir drink, antibacterial and fungal and full of probiotics and electrolytes.

All sorts of support is coming from the community to help, and at this point the best we can think of is small gifts of fresh organic produce for juicing and Kefir-ing.

We're on the lookout for:

Celery, Cucumber, Bok Choy!, Kale, Collards, Chard, Cilantro, Radishes, Aloe, Parsley and Bitter greens (dandelion, frisee, escarole, chicory), Turmeric root, Carrots, Ginger, Wheatgrass.

Green Apple, Frozen Red Raspberries, Blackberries, Blueberries, Cranberries, Lemon, Lime (no other fruits please)

Young Fresh Coconuts! (get by case at Hua Xing, asian market on Washtenaw)

Maitake, Shiitake, Enokitake, King Oyster.

Love love love!

We're excited to bang coconuts open with a hammer after making a sweet drill hole to empty the juice for culturing.

You can drop goodies off in the cooler in the mudroom (through the gate on side of house) at 2234 North Territorial.

A million thanks, friendly friends and family.

Britten and Evan (neighbor buddies)

upon departure.

february third 2013

(to the nurses of 8b)

my mother baked cookies because she is a loving jewish mama and she wanted to say thank you on behalf of our family for all of the confident and kind care you have given me in the past twelve days.

i feel uneasy this morning. of course i would rather be in my own home yet in such a short yet long time this floor has become my home. someone has always been close to help me. i want to leave AND i am fearful of what comes next. this place: a place of my oddly shaped rectangular walking block, of heprin bruised arms and tortured bowels, hazel placed rainbow stickers and tears and tears and tears.

thank you for your smiles
your looks in my eyes
and our moments of laughter
i will forever be grateful

blessings.
caryn simon

eating it all up.

A lot of progress this weekend so far!

Caryn is unhooked from her IV, because she's drinking normally. She can eat solid foods! Ronnie is making her spaghetti with tomato sauce. And she's eating tapioca pudding and applesauce and crackers and mashed potatoes. Nausea is much better, and is staying away as long as she's reasonable in what she eats.

The best news is that she may be able to go home tomorrow morning. I'm so excited, and so is Hazel. The doctor said she can go up and down stairs as long as it feels OK. She just can't do any heavy lifting.

Caryn says she'll post something again soon.

-matt

biopsy results.

The news is better than it seems at first. The story has a good ending.

Caryn was awakened this morning with a very poor partial delivery of her final biopsy results. Dr. Liu was not with the team on their rounds, and after examining her to see how she was healing, one of the other doctors said as he was walking out the door "Oh, the results were as we expected, it's stage 3". And then walked out the door. So everyone was rather frustrated and angry, since we didn't get to ask any questions, and it seemed like bad news on the surface, since we were hoping it was stage 2, and not in the lymph nodes.

So we had Dr. Liu paged, and she said that she would be by this afternoon and answer our questions. So she says that yes, they determined it is stage 3b. But the lymph nodes they biopsied showed no signs of cancer, and we thought that was what they would use to determine stage 2 vs. 3. Turns out there was a very tiny tumor on the omentum where it was probably touching one of the ovaries. That's the layer of fat underneath the stomach that they removed. So the only place there were tumors were ovaries, uterus, and omentum, all of which were removed. So, they got all of the tumors and there is only microscopic cancer remaining. All of the biopsies they took around her pelvis and abdomen came back negative. There is no cancer in her lymph system.

So, the news is as good as to be expected. It seems the tumors were very contained and localized.

We got a little more information on the chemo, which they hope to start 2 weeks after she comes home from the hospital. But we're focusing on recovery from surgery and getting her feeling better and home right now.

Caryn was very upset after the doctor visit this morning, but is feeling a little better after talking to Dr. Liu. She's been pretty nauseous today, but got the go ahead to eat crackers and clear liquids. She's had about 4 or 5 crackers.

Dr. Rebecca Liu is really wonderful by the way. She gets the thumbs up.

-matt

chicken broth.

Today Caryn, in a lighthearted spirit, asked for stickers. When the surgical team made their rounds, they gave her some long awaited responses to questions. Like can I start some liquid food? "Yes". Do I really need another trip to x-ray? "No". Can I take acidophilus? "Yes". So gleeful was Caryn at the answers, she had everyone on the team line up so she could paste rainbow stickers on each. Quite a site. They don't get this from any other patient! A watermelon lolly pop and two spoons of chicken broth were like heaven.

Hazel's visit was a bright spot today. She was sitting in Caryn's bed, stamping little kitty and flower designs on paper, as well as on hands and almost on the blanket. (Time to change activities). Caryn took a long walk down the hall with Hazel, Bari and Ronnie. Hazel was marching and at one point looked back and said, "Mama, you're not marching!" Caryn picked up her pace. All the while, Hazel was pasting stickers on things and people. Smiles from all corners. The funniest part of Hazel's visit was when we were getting ready to change her diaper. We jokingly said that we should call Caryn's nursing assistant to help. Well, Hazel pushed the call button! We cancelled in a hurry, but told Amy when she walked by. She said we'd have to do that one ourselves!

The evening still holds two more rounds of walking the floor, a shower and painting her toenails yellow! Yellow is to give strength to her third chakra. We are all pleased at the little signs of progress that are finally happening. Right now we want her to get her strength back so we can go home and continue healing from there. We know all your prayers, wishes, thoughts are helping and supporting Caryn and the family.

The Simon Family

this has nothing to do with Caryn's condition:-)
http://www.fart-sounds.net/fart_sound_board.htm

getting better.

Caryn is feeling a little better today. She slept well last night, her pain is down, and they say she might be able to have liquids later today!

She had two Hazel visits yesterday.

That's it for now.

-matt

notes from caryn.

i am touched with a resurgence of love for my husband after reading this last entry. matt, i'm sorry i sometimes need things that aren't natural for you to give. you're paying attention to me and i can tell that you love me.

i have no idea what day it is. i do know that my surgery was scheduled for the 23rd which was a wed and i was suppose to stop eating at noon the day before. it's pretty much been a blur since then.

(this is suppose to be funny) i think i'm still hallucinating even though i'm no longer taking morphine. i know this because i keep opening my eyes to a room full of doctors starring at me and all that's coming out of my mouth is incoherent babble.

and that salve jar thingy was way more funny than matt made it sound. my sister literally held the jar salve out to me, i put my finder in it and then fell asleep.

there are lots of tiny little poop joke moments that are funny or when i'm in a space where my body isn't that uncomfortable i can laugh a little bit. but the reality of what is really going on here is so foreign to me i can't make sense of it.

i have heprin bruises all over the backs of my arms that are dark purple. my surgical incision is insanely painful. it's unfamiliar for me to be physically weak. to me mentally weak is something i understand and that's different.

its really scary to not know enough about what's going on around you to advocate for yourself and do the things you would normally do to help yourself heal.

i'm happy this hospital was here to take the cancer out of my body. but didn't expect to be left with sleepy bowels, bladder and an UTI.

i'm really sad that kate ulllman dropped off home made crackers for me and i can't eat them. i had to watch hazel eat one today. and what about all these delicious broths and juices we had planned jenna?

i'm scared a lot. i feel like i have so much ahead of me and i really thought i'd been through enough for awhile. i still don't understand why this is happening to me. and i have this little girl and she feels like all that matters and i can't be with her. and when i have chemo i definitely can't be with her. i want to live long enough to be a part of her life. i could cry at any moment if i keep thinking about it so i try not to think about it.

i can really feel that there's a lot of love out there for me. keep it shinning i can feel it. it's helping to hold me up.

ps. i want my sister to sleep with me every night.

GI tract gets a makeover.

Caryn has had a bunch of doctors looking at her bowels today! We've got some new ideas on the gas issue from some specialists, and hopefully it will get moving over the next couple days. More walking, more sitting, less morphine, more enemas, a new laying position and possibly some other things if it doesn't resolve. But still agreement that food will not help at all. Nothing by mouth.

She's had a couple of visits, and her mood has been up and down. The discomfort is kind of bad, and she's felt a little hopeless at points, but there's also been periods where she was resting comfortably and more alert, making little jokes, that kind of stuff.

She says the funniest thing that has happened was when Bari held out the salve for her to put on her lips, and Caryn fell asleep with her finger in the jar. Bari had to wake her up to finish.

I think the funniest thing was when she handed me a half-sucked luden's lozenge at 11AM and said she didn't want it anymore. I said "Where did that come from?" and she didn't know, but I found out later that the last time she was given one was when Bari gave her one around 6AM. 5 hours in the mouth!

-matt

more gas.

Apparently gas and distention are very common after abdominal surgery. We're trying to get her up and walk as much as possible, which is supposed to help. She's actually more alert and walking better and farther than before, but she's in quite a bit of discomfort because of the gas. And they're not letting her have anything by mouth at all until her bowels wake up.

So pray for toots.

-matt

gassy

Caryn was a little bloated this morning, so Dr. Liu gave her some stuff to help with that and said she still can't eat anything! But she was able to have a little juice. Hopefully we'll get some food in her soon. An even longer walk this morning, and she is a little more alert. Still has trouble keeping her eyes open.

I've been sleeping at home with Hazel each night while Ronnie and Bari rotate staying at the hospital, and with Stu, Sarah, and my parents in town for the weekend, we've got really good family coverage right now.

Hazel came by for a little visit this morning. She's been a champ, but she let me know this morning that she really wants mama to come home soon.

Doctor hasn't said anything about going home yet, so we'll probably be here another couple days I'm guessing.

-matt

much more alert.

Caryn's port was successfully installed, albeit much later than it was supposed to be. Hospital time! She is back in her room now, and she's had the go ahead to eat liquids and drink as much as she wants, although she only feels like drinking water.

She made her first phone call tonight, to talk to Hazel on the phone, and she is in pretty good spirits and able to hold a conversation.

She told me to say something else, but now I forgot what it is.

-matt

today.

Caryn is much more alert today. She has less pain, is talking more, and walked a lot farther than yesterday. Still not feeling like having any visitors though. Going downstairs to get a port installed soon, looking forward to having that done because Dr. Liu said she could start having fun things after that, like as much water as she wants and tea and maybe some broth. We'll just go slow on that to make sure she can handle it.

Thanks for the flowers, cards, food, and offers of help. We appreciate them all.

-matt

recovering.

Caryn slept most of the morning. She looks a lot better now than she did last night, and is much more alert now, although she keeps drifting off. Dr. Liu stopped by and said everything looked well. Reduced the morphine dose to help her wake up a little, said to keep getting up and walking around, and she probably won't be able to eat broth until tomorrow. Just ice chips right now.

Caryn's sense of humor remains intact. She told us we were mean for getting her up and making her walk, that it 'sucked balls'. I asked her if she had any message for everyone and she said 'ow owee owee ow owee'.

We can feel the energy out there and appreciate it.

-matt

post surgery.

Caryn went through surgery just fine. She had a great team and they took really good care of her. I have not seen her yet, but she is in the recovery room and awake. We spoke to Dr. Liu afterwards, and they did take out her ovaries, uterus, and omentum. There were some small tumors on the back of the uterus, but they could not see any anywhere else. They took swabs all over the place a few lymph nodes. They'll have to biopsy everything before we have final results. The only thing we know for certain right now is that it is ovarian cancer, it's either stage 2c or 3c, and she will need chemo. Full recommendations will come in a week.

Right now we are focused on loving and healing our sweet friend and the best mama in the world from her surgery. One step at a time.

Thank you so much for your love and prayers today. We'll still be needing them over the next few months, and we'll be asking a lot of our friends in the days to come.

Love you all.

-matt

surgery time.

Caryn is getting prepped for surgery right now, it's looking like the surgery will happen at 3pm. We've taken over a section of the family waiting area and are all wearing heart stickers to show we're on Caryn's team.

Sarah

surgery time changed.

Surgery will be at 2 PM on Wednesday.

Please send healing light, body strength, trust & faith with your prayers for Caryn during her surgery.

-matt

surgery scheduled.

We've heard that Caryn's surgery will be at 12:47 PM. We will arrive at 10:30 and get prepped. Surgery should take 1.5-3 hours. Please keep her in your thoughts and prayers during the surgery. I will attempt to post if the time changes at all.

-matt