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.