settling.

first these things for the story all together:

1. dr lu grins and tells me I'm finally doing better.
he did. before this nothing. even when I felt my mental state was improving. 
nothing. this time. a smile. you know it's more where my mind is than 
what he sees inside right? it is. it is everything. 
trust me. I have come to know this with repeated experience. 
one has to go on living first. and not just that. 
in truth. in gratitude. in the direction of fulfillment. 

2. why doxil is red.
okay so this is really wild. at infusion earlier this month my taxol
was exchanged for doxil. it's red. like cherry juice red. like kool aid red. 
creepy. the nurse did not know why. the head nurse did not know why. 
I googled. I got this: red death. the red devil. yeah.
no more information could be found around color origin.
my nurse arrives later on with a print out from the pharmacist. she walked there
and back of her own volition. the pages say this:
so some soil was dug up from beside a 13th century castle. castle del monte in italy.
a bacteria was isolated that created a red reaction. this drug came from a friggin fairy castle!
wtf?

3. the party is in this room. it was, in my room. i had friends who had flutes and yummy snacks and lots of art projects and rainbow dash was there too. the hospital art director was drop jawed.
she had never seen anything like this before. this is how we do it.

4. why sorting through rusty bolts, plastic silverware, and hunting gear brings me my ultimate joy.
it just does. literally. everything about it.

cliff notes for not forgetting.

1. dr lu grins and tells me I'm finally doing better.
2. why doxil is red.
3. the party is in this room.
4. why sorting through rusty bolts, plastic silverware,
    and hunting gear brings me my ultimate joy.

i knew i would get sent home from chemo and what are you drinking?

i have always gotten screechy draws on what is in my mason jar.
sometimes it looks like a stool specimen when a cotton tea bag is floating in there.
sometimes it looks like bile.
sometimes like the urine of a very dehydrated individual.

'what are you drinking?' the woman seated next to me asked
while we were waiting for morning blood draws.

lemon.
maple syrup.
grated ginger.
tincture of turmeric and turkey tail and maitake mushroom.
black pepper.
cayenne.
i lean over to her ear and whisper, 'i makes me poo.'
some time passes and she leans over to her husband of perhaps 60 years and whispers even quieter,
'she says it helps her go poop!'
i wrote the recipe on the back of a TIDY NEST card and handed it to her.

i got sent home from chemo.
i expected it so it did not crush my spirit.
on the contrary i met jenna at monahans fresh seafood bar for salmon, calamari and french fries.
super yum.

my beautiful hindi oncologist and i had a heart to heart:
so the nodes in my thigh are causing reconsidering to happen.
he thinks perhaps they have become resistant to the carboplatin/taxol combo.
they perhaps have learned to outsmart the poison.
fascinating.
he would like to switch my cocktail to carboplatin (standard for BRAC1 peeps)/daxol.
AND he would like to add one more round of infusion.
so that would put me at 7 total vs. 6.
i would have 3 left.
and
like i care
my hair might start to grow back because that is taxol related.
(i think he kindly offered that as an up).
you guys he is separated and has 2 young children.
what am i to do?
i have a thing for indian men.

i asked if peewee could be severed.
my counts are looking really good.
pleeeeeeeeezzze?
he compassionately scheduled me to get whats called a pressure check to see if its still needed
and then scribbled it out in his notes because he really thinks it will be safer to wait incase my counts get messy again.
he would not want me to have to get it put back in.
oh peewee.
stop stalking me.

i left the hospital totally unfazed by all this news.
its just another thing happening.
i felt full of mojo-sie.
thank you dr. miller for that one.
im not acting in fear anymore.
no I'm not.

pee wee.

is the name of my nephroskpy bag.
(thank you sacha).
that is what i said to the doctor in the ER 2 weeks ago
right before he told me i was his most fun patient all day.
i said to the nurse who had to collect a specimen from the bag,
'isn't that the prettiest URine you have ever seen? look how clear it is!'
that was right before he told me he has never had a patient like me before.

my kidney function is almost back to normal i found out yesterday
at my visit with my beloved holistic oncologist.

you know what that may mean right?

seriously i can't wait to take a shower.
its been three months!

just kidding.
it really does suck though.
it slips down my leg all day.
gets stuck on stuff and yanked.
accidentally patted by beloveds.
one time it slipped so far down my leg my boot crushed it
and i had a pee-plosion.

pee wee im so done with you.

thank you for saving the life of my left kidney.

phase II MRI results.

deep gratitude and light joy (in the way he gives)
to my dear cousin kolin for repairing the email update option connected to this blog.
thank you kolin.

i saw dr. uppal prior to chemo on thursday afternoon.
the tumor is shrinking.

the tumor is shrinking.

there was a time when my alternative healers believed there was a chance this cancer would not respond to chemo given the way it it hid itself from detection.

thank you teacher-cancer for this response.

there are some lymph nodes on my upper thigh below the tumer that may be in question.
they may be slightly enlarged.
1. because they are growing.
2. because of uriter irritation from my stints.
3. because they were hidden from view at the time of the first MRI they were not observed and may therefor be of no concern.

this was my 4th round and i will have another MRI after my sixth.
same as last time.

-------

i received a graceful gift last night.
my friend michelle massy barnes presented an ignite talk at u of m. she shared in 5 minutes with only 20 slides a piece of my cancer story with my daughter. the images on a big screen brought big-open-heart tears to me. she shared with such dignity and peace for my process. she re-affirmed my strength through witnessing.

gratitude michelle.

reboot. not robot.

this is a test. did you receive an email letting you know a post was made? 

send a text to let me know so I can celebrate and begin again and celebrate 

my cousin Kolin who is a genius. genius. I love you cuz. 

c. 

note to incoming self: get IV fluids.

you know how when you are sick for a few days you begin to loose your mental facilities?
and not just your ability TO think but the thoughts that reside in your kepi get kind of dark and lonely?
i had forgotten it is the same with chemotherapy.

so you feel like you are DYING because you kind of are. and there are these wonderful homeopathic mistletoe injections you are doing to boost your immune system and fight cancer and when you reach the correct inoculation point do you know how you can tell?
you get flu symptoms.
which is good.
but oh man does it suck balls. (excuse me).
and if you have already hot flashes and your belly hurts its a little difficult to place it all.

but that is what was happening.
IM ALMOST INOCULATED!

so yesterday jenna suggested and master kim and dr. miller confirmed i could benefit from IV fluids.
AND blessed be the university of michigan was able to accommodate me without struggle.
(remind me to tell you about leaking nephroskpy bags and bullshit! ((excuse me again )).

the difference was palpable.
and i was able to finish in time to go see my girl's gymnastics class!

when betsy and i walked in the door and i spotted her in her piggies and her pink and purple one-piece with little shorts unitard i went up real close and she turned into a barnacle and squeaked, 'mommie mommie mommie mommie!'
she hardly ever calls me mommie. i could feel her little body buzzing.

some photos of her so you can see how she glows:
in devotion,
caryn.

p.s. is anyone who submitted their email getting update notifications?
       it seems blogger is having a glitch.




at the a2 skatepark with her papa.                                                          up north with bubbe, saba, auntie b and dan.                                                                                                 

  

at the aviary in grand rapids with grandma and grandpa and auntie sarah and cousin augie.
sarah told me h said:
'auntie sarah they are hurting me but its okay!'
so hazel.



last night listening to george michael and queen with levi before they went to bed.

down day.

dr. miller said i was one gallon low on water.
being in the car brought the moans.
chemo did bring discomfort to my body 
AND to my heart.
snake-like trying to crawl outside my body. trainspotting?
looking at condos today and getting closer to decisions that solidify the chancing time.
sitting against the wall with my head in my hands while stu asks all the right questions.
i feel melancholy.
sad for how things went that got us here.
to be making a space just for me and hazey.
the translucent curtains shifted and i let some mourning come out.
i keep ending up in places that i never thought i would.
over and over.
like really different places.
dr. miller says it will all make sense soon.
he's pretty magic so I'm going to hang on.
c.

hello mr. Barak Obama.

hello Mr. Barak Obama whom I respect very much.  

I'm writing in hopes that I can receive some support

for my current medical situation. 

I am a 39 year old mother of a five year old girl-child. 

my husband of 7 years and I just recently decided to separate. 

literally 3 days later I was re-diagnosed with ovarian cancer. 

we have very expensive insurance because of my history

of cancer and because I have the BRAC1 gene I have both a yearly MRI

and mammogram testing. 

we are above the poverty line but by no means wealthy. 

my husband-ish is a native plant landscaper. 

I am a birth doula, herbalist, and stay at home mama. 

honestly we spend the majority of our income on organic non-processed food for our family. 

prior to my re-diagnoses we were spending

13-15% of our income on my hospital health care. 

this is not to mention the other 3 alternative healers

we pay for out of pocket. oye!

I recently applied for Msupport from the university

of michigan and was denied because we have modest savings. 

I ask you is it now expected that we spend our combined 

life savings on my cancer treatment?

and not just that, we are

trying to sell our 2 acre farm because we will now need

to rent two separate homes. 

the one thought I have is that We could quick quick

file for divorce so I could get Medicaid as I am unable to work. 

not only will that take a long time to process I'm sure, but I feel like I would just be trying to get around the system. honestly my heart is not ready to do that if you can understand. 

what would you advise I do in this situation?

being a individual who operates from the heart I am having trouble

believing that I am simply bound to be stuck here without a creative solution from my government. 

I very much appreciate you taking the time to read my little novel here. 

please I hope you will respond as soon as you are able. 

blessings on your beautiful family

and on your path always. 

Caryn Simon. 

about my work:

www.carynascreatrix.com

about my journey with cancer:

http://dancinginsidemyself.blogspot.com/

what is really happening.

is that my insides are dying.
some of them.
i can really feel it and it is spooky and disorienting.
im nervous i won't sleep tonight.
c.



the opposite of how i am feeling is here in this fecundity:

i am inside a fun house of nostalgia.
c.

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.

still caryn's journey

I've been waiting to write until i have more information,
but that is beginning to fell counterintuitive.
i have cancer again.
an ovarian tumor that seeded from my first round.
its in my pelvis.
sitting on my sciatic nerve, and that is how we found out about this.
because of the sciatic pain it has been causing for the last month and a half.
wrapped around my urinary pipe, and a nerve.
I'm getting a stint placed in my kidney tomorrow.

some of you have already offered to support me in what i may need.
im not really sure yet what that looks like.
i know lots of love and prayers and friends around me.
i thought it would be helpful to start a list.

if you would like to offer support please tell me what kind of help you do best.
singing songs? organizing? emotional support? rides? physical support. whatever comes to your mind.
i think i will ask my friend to help compile a list and organize it for me.
keep me off the computer.

i love you all so much.
I'm going to do my very best.
i have excellent medical/alternative support.

caryn.

on peter beal.

one of the last times i saw peter was when he cam to our farm after i got diagnosed. he teared up when he hugged me and did not want to let go. he thought i was going to die. mary confirmed this recently. not only that but he was devastated that i could not have more children. my champion.

february 23rd just passed and i did not mark it. this was not intentional really, i had known it was coming but it slipped my mind. i spent that day, 6 days ago at peters funeral.

he was 67. he was the most intelligent man i have ever known. because of his intelligence i think it was hard for him to be here. in a similar way that being an HSP can make being human. he and money were not good friends. i don't know if he ever could have really cut himself free from that one. he was an alcoholic, and though heartbroken in life, i believe he made a choice. i do so to comfort myself.

here is the eulogy i read at his service at st. paul church on liberty street in ann arbor, michigan
on february 23rd 2015:

"peter brought me home to my love of the woodshop. maybe that is why he hired me on, he sensed i would tip over to the scent of sweet cedar and oak woodshavings. the hard blast of the oil heater and elevated hum of machinery that cradles brilliant hands. that massive log chomping wood stove burner that almost melted its pipe the day iforgot to tamp it down. he would take me out (on the clock) to gather the hen eggs. when he was evicted we hurried to fence our yard so we could foster the best of his flock. he continued for months to pull up in that big white van slinging a paper sack of crusty fries, dry pizza, buns. . . . he could not bare to pitch it with them on his mind.

peter placed shoved our farm house on territorial in my hands by a sheet of real estate paper. he brought that listing out to the shop for me and grumbled, 'hey you might want to look at this one. its a fixer upper and I'm way too old for that now.'

when my daughter was born peter took her so quickly to his lap. i saw him in his best self then. he brought for her some of anna's childhood toys that they had cleaned together and she had conceded release of. i remember the day i told him his work table was too close to the table saw for my wide childbearing hips and he chuckled coy and i knew i had won his heart.

when i went to peter asking for a job in 2006 he took me on though i had no real skill in fine woodworking. just crafty hands, good commitment, and a past with a father who kept a shop in my childhood home. i was smashed inside one of my bouts of depression early in our friendship. maybe that is how our souls recognized one the other. he was the only one who could give me a one-armed shoulder hug and tell me to, 'cheer up,' without royally pissing me off.

but what i am getting to is that his practice was to leave me these minutely detailed instructions. incase i arrived to the shop while he was still in the big house. i would pour over these plans while a voice in my head told me i had absolutely no idea what i was doing and that i was most likely going to screw it up. this happened frequently enough and i know he saw my reserve but he kept on the same. i can to see that he left me those instructions because he knew i could do it. he had a faith in me and way trying to let me know without spoken words. he would say, 'do your best and if you fuck it up we'll just fix it.' he let me know it was okay to make a mistake. i felt cherished and protected with peter around me. i would sometimes go to the shop just to sit up on the cabinets and swing my feet and be near him and all those opera tunes and noise and dust. that was the purest comfort to me. peter had faith in me in a way not entirely familiar to me by an elder. so i took his gift to heal my own wound there.

i really wanted to see you again peter. I've been trying for months peter i know you hear me. you always said i reached out right when you were trying to hide. and i would say, 'peter you are always trying to hide,' and you would say 'well yeaaaaa. . . . . .'
you used to tell me that anna and i were the only ones who texted you. if you got a text you knew it was from one of us so you would be compelled to answer. you would sometimes even answer my calls in the middle of teaching shop. i recall clearly you telling me about this beautiful younger woman who was courting you. wearing you down with fresh baked biscuits and pies you said. you fell for her you did.

i know you love me peter. i leaned on your love like my own blood family. like i do my oldest and dearest friends who share love unconditionally.
your stubbornness and pride aside.
you were a tender man.
i have not doubted your adoration for a second.

in devotion, caryn."

the body in the rented coffin at the east side of nie funeral home viewing room on carpenter was not his.
i asked the funeral director what side of the room the coffin was on before i walked in the double doors to prepare myself. the jews don't usually practice this ritual, and my bodymind still tangles up in fear in these situations. i see the point in it now. i don't find it scary, just odd. we make heartfelt actions of teaching hazel about the body and the spirit and where is peter and can i touch his hand and i miss my friend and i do not get even a tiny sense she is uncomfortable. this gives me great hope in her journey and also hugh fulfillment in our parenting.
so it did not look like him at all. mary and i talked about how in that moment it eased the pain somehow, that he had clearly left his body and was not here anymore to swoon on in regret.
but because of this i am throughout the day seeing him clearly as he was- dressed in his white painters pants and open button-down. hunched a bit in his posture and choppy in his gait. wire rimmed glasses. mad scientist passion. every time this happens my body convulses inside. trying to make sense of how alive he looks and the truth that i will never see him again.