my guts are back.

for so so long there were not here so i could not move in complete trust or they were here and i did not listen to them.
i can feel them holding place in my belly now. i say this in reference to my deciding to switch oncologists this time around. it was a really really good idea but not usually a suggested move when someone knows your history so well.
but dr uppal has a heart! and a bedside manner! he looks me in the eyes and comforted my by holding my hand for a moment after he had told me the cancer was back and i was balling my eyes out. 
this morning he called me on the phone. thats right you heard me he called me on the phone.
i know.
he wanted to check in with me about what was the best choice to make about my internal stint right now.
(removal just prior to not tomorrows chemo but the next round).

then he asked me how my pain was, and i had been wanting to tell him about this and jenna trusted good direction 
but i was afraid to trust for being let down by my body. 
remember the morphine? and then the morphine and the oxycodone? 
I'm hardly taking it any more. maybe one 5mg tablet or tops two a day. 
i had been taking 2-3 every 3 hours.

he reacted to my announcement with audible excitement in his voice!
im not exaggerating.
he said 'oh caryn that is such good news!'

this is so because the hope/assumption is that i need less pain meds because my pee string and vein are being squeezed less because my tumor is shrinking. and i have only had one round of chemo so far.
big breath.
thank you guts.

little shofar blower.

today i fell in love with my daughter for who she is as a being separate from me. i have been the kind of mother who fears the day her child will withhold love. the devotion to this little thing is so great the thought of not being enveloped is so painful i had been carrying real pain in my body over it. i had not been ready to let hazel go. and this teacher cancer that i have has helped me to do that without even realizing i was. that i needed to for her and for me. 

today was the first day i saw myself in this child's face so intensely. my heart got so big and fuzzy i thought it would ooze out of my skin. she is beautiful. she is cozy in her soft clothes. she will not let me put her hair up in pig tails, only bubbe can do that. she is a certain way with me you know? because i am the mother i get the whines and the unaware dismissiveness. i never see the side of her that is when i am not there. today i saw it. 

i had been napping on jenna's porch letting the sun warm my bald head. (my most favorite autumn weather was today). 

i had just spent an hour talking to her amazing neighbor about parenting and a child's spirt and steiner school and child development and her births and i told her, 'you know it is fine if your boys ask me why i have no hair it needs to be normalized my someone who is seeing cancer as teacher instead of death bringer.' and she said 'you know i don't know if they even noticed honestly they probably just thought you looked different.' so true.

bubbe pulled into the parking lot with hazel and she b-lined it for her tricycle which has been living on this porch. i said hello and she. . . . . . eh? you know. my mother said something like 'not even a hello for your mama?' and i said 'you know its okay she's excited to ride her bike and play with silas and its okay. I'm not hurt. ' 

ohhhhhhhhhh I'm not hurt. hmm. I've learned that if i petition her for love it feels not good and what i get not true. so I'm learning to stop that. i watched this little girl. she is so kind! so kind to her little friends. 'oh let me help you with that' and 'do you want to switch bikes' and 'levi ill help you take out the recycling' and 'oh mama do you want me to go get your phone?' and so gently. the neighbor mama relayed a conversation hazel had with her son last time quin was over. hazel had quin on a leash and told the boy that quin does not like kids except for her because she lived with quin and that he should not pet her and that he should know that, something like, don't feel sad because she is like that with everyone. her awareness of others feelings was for me to see today. 

i thought with the separation i would be lost not having her all the time with me. that she would not love me 'enough' and we would grow apart somehow. it is instead a blessing because i am seeing some of who she is. for the first time i get to see who she is when am not there. and I LOVE HER SO MUCH! i love this little person who is separate from me. her heart is so big and she loves so big and she treasures her life experiences already. this is a child who will look up from making a house out of a cardboard box, pause, and say, 'mama I'm so happy right now!'

she is so supported it really blows my mind. when i was growing up i didn't have a close non-blood auntie or even grandparents that were close. she has a big enough family to put on a really rad big-top circus show. and I'm so happy for her. yes part of it is me and part of it is matt but a big piece of it is the magic she has that is all her own.

peace out hazey.

update on GOFUNDME love.

in everyday i experience weeks. I'm fumbling to express all i am learning, which i want so much to share with you. 

i have told a few friends this. . .' one of the most wonderful things about having cancer is that i get to be with all my friends.' and i mean that with a full heart of joy. i have the most wonderful friends in the world (for me). 

and i think most important for this venue i want to tell you all what this lovemoney you are gifting me is doing/feeling.

- i feel deeply connected to all of you. 

- my ability to have an open heart is gaining frequency and magnitude. not only is this of course beautiful to my learning, it will actually physically increase my ability to heal and survive this. 

- the knowledge of how beautiful my friends are acting as mirrors, i am beautiful too. 

- my stress about money that i need in this time has evaporated. more stress gone better healing again. 

so i am also quite a minimalist. 

I've spent the past few months before being diagnosed purging my home of roughly one third of our belongings. keeping only what sparks joy, (thank you marie condo). 

so far this lovemoney is buying very high quality salmon which is nourishing body and soul. it feels perfect for me to be able to share this with jenna who is selflessly feeding me so much love. its important to nourish the caretaker! 

i have thoughts as well of what this lovemoney can do to bring joy to my life RIGHT NOW IN THIS MOMENT. 

i'm thinking about getting some bodywork. this may seem obvious but the plentitude of what i am needing to organize even outside what emily's organized is so big i have not really slowed down yet. slowly. I'm doing better. I'm gaining ground. 

I'm thinking about supplementing rent for the year if need be. 

I'm thinking about hiring a doula of sorts to check in with me daily and help me source needs/desires. this is something i would never think to treat myself to without the support of my community. and more of that- 

I'm thinking that when i shift to my next living quarters i may hire a interior decorator (probably a friend) to help me create the cozy space best suited to my heart and body and healing. those of you that know me well know that i am very sensitive to my environment! 

I'm thinking about some dishes for my new place. 

-------------------- 

and the coupon my parents gave me 3 years ago for my birthday, the coupon for a hot air balloon ride? 

accessing that now. time is of the essence. it will be a leaf changing celebration of life and you will all be invited. 

back to bed for me. 

i love you. 

caryn

three little blond fairies.

today they covered me in blessing flowers.
floating down from giggling sweaty fingers.
every color.

had an epiphany last night in between layers of almond and coconut

I promise to tell you about it really soon.

c.

morphine haze.

I don't recommend it even though it sounds cuddly.

I am in such a spin right now I haven't come to place of calm to

be in and realize what is around me and what I'm holding vs what's

holding me up. I don't know how to even begin to thank all of you

for what you are gifting me. for now I'm concentrating on feeling

the love.

caryn.

caryn's GOFUNDME page.

Many of you have been asking how you can contribute to c and all of her needs.
It has been amazing!

At the moment, the most important and critical need is for Caryn to rest and feed her body with nutrient dense, clean food, continue seeing her handful of blessed healers, and limit stress!

In order to make all of these things happen I feel that financial stress needs to be relieved. Some of you have asked how to contribute money (and have already - thank you!).
Here is the link to make a donation!

gofundme.com/ad422kkf

Even $5 helps c stay afloat with her needs. Pass this along to anyone you think may want to help. Share it on your Facebook page. Every connection creates support and reminds us that we are never alone in our struggles.

I appeciate you all for your grace and love.

Emily G.

whats that? I'm breathing.

after chemo yesterday Diana took us right to see master Kim during open house. I was so exhausted yet the importance of getting a hug from him and receiving some energy work was profound.

this morning I woke to a lifted spirit. I did not realize how much the pushing towards chemo was driving anxiety. I feel like I can have some (gentle) fun now.

gratitude to my healers. dr uppal at the u. I'd use the word adoration for this doctor. dr lu. dr Andrew miller, master Kim and the sunshen gang.
and all of you.
holding my up.
loving me and feeding me and sitting with me at chemo.
oye.

chemo care for caryn.

Update from Emily Griswold-

C has been released from the hospital and is settling in with dearest Jenna in the comfort of love and support of maternal and loving energy! Yay!

The stint placed last week and the surgery on Tuesday for her kidney seem to both be helping - AND she can start chemo tomorrow morning! This is wonderful news. The sooner that this happens, the sooner that she can start feeling less pain and rid her body of this beast.
If you are called to say a prayer, put intention toward swift and effective treatment, hold space, light, love and a whole and complete Caryn. please do it!
The chemo is scheduled for 11:30 am. I know all good vibes and intentions expressed during that time will be received and appreciated!

Thank you all for all that you are doing for Caryn! Your continued love and support is felt!

love,
emily g!

where is waldo, an explanation.

I truly feel surrounded and held in love.
thank you for lighting a beeswax candle Katy. that feels just right.

where is waldo?
I want you to know about this fantastical woman that is my friend.
remember the recent cancer survivor white water kayaking trip I went on in Montana? I found her there. we found each-other because she was my favorite anyway. And she lives outside Detroit!
she likes to stay I'm stuck with her.
I say stickiness never brought such joy.
I don't want a napkin.

another amanda (klain) visit update.

Caryn is resting at the hospital, her sister Bari is there with her. 
Her surgery went well, it sounds like she will be at the hospital for up to 48 hours after surgery. . .
so she should be home (probably at Jenna's) on Thursday.
I brought her some grapefruit, kiwi, avocado juicy mix and she loved it~~
She is silly, and tired though, lets all wish her a good night of restful peaceful sleep.
Prayers and good vibrations welcome!
Amanda.

Waldo (Amanda) writing from the hospital.

Quick update even though we don't have a ton of new info right now. 
Caryn is ok and resting now at U ofM ER. 
She is still making me laugh even though she is on IV pain meds (which are helping a bit) and she is really sleepy. 
A highlight was when she saved her pee without the nurse even having to ask her and a minute ago she did some robot talk too (beep bop boop beep). 
It looks like she is being admitted to the hospital before surgery but we aren't sure when that will happen exactly but probably today and that should help her kidney function in order to be able to start chemo sooner. 
Good news was it looks like the stint has helped a bit already with the creatin (sp?) levels.

practical needs and info edited.

Hey Everybody! Itʻs Emily Presley here. Some of you have emailed me with awesome suggestions of how youʻd like to help our dear, Caryn. Now that we have a document with all of your talents and contact info, I am now passing the baton to the lovely Emily Griswold to coordinate with you all as Carynʻs needs come up. Sheʻs awesome and I simply live too many time zones away to be helpful.

Emily Griswoldʻs email is familycirclefarm@gmail.com.

In case you want it, here are some answers to frequently asked questions about how to help Caryn.

CURRENT ADDRESS:
("i love little tiny surprises in the mail from far away people. especially plastic my little ponies")
Caryn Simon
c/o Jenna Wunder
2742 Barclay Way
Ann Arbor, MI
48105

A REQUEST FROM FRIENDS to FRIENDS:
Caryn feels itʻs difficult and a bit awkward to ask for monies. We all know this feeling. There is no denying how helpful it is, though. So Iʻm asking for her.

Caryn is receiving alternative care from 4 expert providers, 3 not covered by her insurance. getting veggie juice made daily by a friend, sipping on fresh coconut water and doing all she can to support her body. As we all know, the costs rack up. We all have an abundance of resources and I feel the yearning from yʻall to share them--be they time, food, prayer, money, or whatever else. I understand that money is the most choice way for some people. If you feel so unbelievably excited to share your dollars with Caryn, feel free to do so via PayPal at artemisia418@gmail.com. Or you could send an old fashioned check to the address above.

artemisia418@gmail.com

CARYNʻS SPARKLE DIET:
*Anti-inflammation, low glycemic diet*

MUST BE ALL ORGANIC (and "happy" animal stuffs...wild-caught, free range, organic grain fed etc.)

::Fruits and veggies are great

::Meat: Fish (SALMON fresh and canned, especially), Chicken, Turkey (No beef, pork)

::Oils: Ghee, Coconut oil (NO other oils (except organic grass-fed butter ok))

::Great: Avocado, Coconut water, Young Coconuts, Snacky protein stuff (homemade fish/poultry jerky=ideal)

::Nuts are okay (walnuts and seeds best)

::very little gluten free grain- quinoa, amaranth, teff, gf oats, buckwheat

::No sugar, (Honey good)

::No dairy

GROCERY ITEMS
(ALL ORGANIC)
::'harmless harvest' coconut water ( whole foods)
::Lemons
::kale
::cucumber
::parsley
::green apple
::cilantro
::preferred organic fruits for snacking (pineapple, cherries, grapes, mangos, berries. grapefruit, artichoke)

This is a reference list of info but feel free to connect (Emily Griswold: familycirclefarm@gmail.com) so we can coordinate and make sure Caryn doesnʻt get squashed under a pile of beets.

xo,
Emily Presley

slow slow.

diagnosis came 10 days ago.
besides getting the stint placed on monday nothing has moved forward in treatment..
because my kidney is stressed being squeezed by the tumor.
chemo has to be put off until function is better.
the blood draw on thursday showed some improvement but not enough.

its been hard to wait, to not have a plan yet.
slow is faster a wise man once said.

I've been spending time gathering support.
figuring out ways (with the help of some fantastic emily's) how to make contact easy and fluid.
make it so i can stop exhausting myself and do resting instead.
thank you all for loving so much.

the plan now is for me to have surgery on tuesday to install a nephroscopy bag in my left kidney.
i think its going to be really glamorous guys.
if i love you lots i might even let you change it.
this is where i am.

hopefully that will relieve my kidney,
and chemo can be started very soon after.

c.

getting on the train track

today was a really hard day.
i woke up in excruciating pain.
from the stint (oye the stint) but mostly the tumor site.
apparently i was not taking enough of the pain meds given to me after the procedure.
thank the goddess for my heartsister jenna.
she stayed on the line with the urology nurse figuring out a precise schedule to manage my pain.
now i can breathe and think again.
in that moment in all that pain the fear got big and that is a place i don't want to dwell in.

so if you have never had a stint in your urethra let me tell you don't start now.

i got sent home from chemo on tuesday because from what i understand
the stint had not had enough time to support my kidney function, and it was too low
for chemo to be administered safely. thats always a bummer.
i had my coloring book and everything.

so recheck on blood levels tomorrow (hazels 5th birthday) and then hopefully chemo friday.
dr lu. is devising a plan of support through acupuncture and chinese medicine.
master kim and the sun shen discipleship is supporting me with boatloads of chi.
and i have a cancer specialist chiropractor on board i will see tuesday next week.

okay so there is a bit more i want to share with all of you.
I've waited until the appropriate people had first hand knowledge,
that now done:
matt and i are separating.
this choice is completely mutual. done in love.
we will be much happier people in this new realm.
for my health to make radical remission this is necessary.
we have struggled long and done so much work,
it has in fact gotten us to the place where we can do this in grace.

that said.
i am currently staying with my friend jenna cause she is rad.
we are selling our house and matt may or may not stay that whole duration.
i originally thought i would want my own space with hazel,
a space full of light and creativity, i still do
but more pressing is my desire to be held in love.
i don't want to be alone right now.

so this is a crazy lot to ask,
and i do already have another option,
but i want to know what sits in the universe should i need to relocate.
please let me know if you have a spare bedroom where i could crash
and have some support.
i may never need.
i think it would just comfort me and help me stay in the moment.
i hope that makes sense.

I'm feeling so much love from all.
its carrying my spirit.

c.