sleeping intermittently with staples.

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

c.

from my badass superpower pointpeeps.

sign ups for support help:

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

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

food: http://vols.pt/36ApRw

tidy help: http://vols.pt/Gjd8pi

update from my poet father.

Blessings, Miracles, and Hazel

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

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

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

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

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

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

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

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

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

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

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

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

We continued our waiting.

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

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

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

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

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

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

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

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

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

Stu

last minute courage or im not sleeping.

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

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

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

c dog.

what i imagine at this time needing help with.

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

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

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

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

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

did i forget anything?

uh.

this is insane.

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

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

i love you all.
caryn.

.

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

c.

just like a miscarriage.

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

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

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

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

c.

'twas not the time.

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

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



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



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

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



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

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



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

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


.

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