an Ako Sunday

It's 4am and once again I'm not a sleep. I was exhausted all day. Now.. wide awake. Balls!

Ako Castuera is here. Ako is an artist, fantastic knitter, story board artist at Cartoon Network , model maker, hobby horticulturalist and an x employee of Jen Lew Designs.

If I am the Miyagi of matchbox making Ako is my Karate Kid. Without Ako's help Jen Lew Designs would never have been. The work load, the stress, and all of the details would never have worked out without her positive influence, calm personality and talent. If only she could have moved to NY with me. I completely understand businesses that pay for employee travel expenses and housing allowance... if I coulda' I woulda'.
Her friendship and talent would have been invaluable over the past few years here.

Rob Sato is Ako's boyfriend. He's here too. Rob has an art show in Philadelphia next weekend. They arrived here Saturday night and sadly have to leave for Amish Country on Monday. Another quick trip by a good friend who went out of her way to come visit. They flew into MacArthur Airport with the plan that I would pick them up, but... my car for some reason still isn't fixed and sadly, I was/am still too woozy and lame to drive ..so they took a small fortune of a cab ride from Islip to here. It was $100 .. crazy. You can take a super shuttle from Hollywood to LAX for like $30.

Today we didn't do much.. not that what we've done hasn't been thoroughly enjoyable. Just hanging around the house talking while Ako knits me a cap for my cold head. Rob paints or sews his shirt. I love being a hostess, cooking for guests showing them around ..but I'm a lame duck. Of course they don't mind..at all.




Don't get me wrong they didn't sit around the house listening to me complain and take pills all day...Alison came by to join us and we got some cheese at the cheese shop and went to Sherwood Vineyard. Then to Bailey Beach where Rob impressed us with his amazing pitching arm. Never in my life have I seen a rock sail so far.
We walked to Garrett's (unnecessarily) controversial art work on the beach. Then home.

The plan was of course to walk to LLK for dinner...but sadly I was exhausted. Didn't think I'd even be awake when they got back from dinner without me. It was only 10pm but it felt like 3a for me. I was up.. slow, tired, woozy but awake..and convinced a good nights sleep was imminent. Around 12am I fell a sleep, at 2am I was up.. and here I am.

I look forward to spending some quality time with them before they leave on the noon train tomorrow. The day will be tough without sleep. I have an order to ship, assorted things to design and publish for various clients, plus a full day of work at NYS ARTS to attempt.
I'll be a basket case.

I'm sad to know I won't see Ako for a while, but cherish the fact she came to visit. Another reason healing and trip back to LA is surely to come again soon. Anyone have a private jet available?

If you are in Philly go to Rob's show
The works of Rob Sato & Joseph To
METROPOLIS
September 4 -- 30, 2009
Opening reception: Sept. 4, 6 p.m.

day after.

i got out of bed to pee. a hundred times.. but that's all i've done.
all day
i feel like a jittery, nauseous, miserable, cranky, chemical filled, blob of ick.

i haven't slept well for days.. tonight i finally fell a sleep at 11p to wake up at ... i don't know what time..but it was a minute before the power went out on our whole block.
finally got further than the bathroom and prepared a bunch of candles.
i know .. my business comes in handy. I found 300 candles and tons of matches in about 4 seconds.

now it's 4:30a and I think I've been up at least 2 or 3 hours.
i hate being this cranky and miserable.
and i haven't even started the prednisone.
power is back on.
Saturday please come and make me feel better.

Chemo Round 2

Fantastically uneventful is how I describe these days of doctor visits, treatments or procedures that go well. With no horrible pain, side effects or incompetent idiots (aka doctors or nurses) Today was awesome if you can say that about a chemo round.

Mom and I took the 6:30 jitney to 67th street and walked to Sloan. I did the routine of giving blood, meeting the oncologist giving him the 21 day update. Ali arrived and then we were sent off to wait for a spot in the chemo suites. The wait is about 2 hours...of nerve wracking impatience but all in all not that bad. We hung out in the sunny cafeteria and drank some tea.

I became antsy so we went back upstairs to wait. First person I see is Karim BenAwand who I haven't seen in at least 25 years. He joined us as I checked into my "room" at around 11:45am. Karim and I connected on FB along with the rest of Bay Shore High School.. and I learned he worked at Sloan. What I didn't know is that he's a Pharmaceutical Oncologist. Which to my surprise means that he's the guy who mixed my R-CHOP chemo for the day. How cool to know the guy who mixed my drugs.. I just love it. And because of Karim's positive energy and spirit. I had no side effects AT ALL! Yay!

Karim hung out for a bit..Mom, Alison I chatted and I started on my drips. There was a bit of concern because the port wasn't working properly and things were delayed an hour.. but we figured out that I need to lie flat in order to make the blood flow and then all was fine. Lynne arrived shortly after we did..because she's awesome, then Joanna showed up with bags of Sun Chips (I heart sun chips) she told stories and kept us laughing. Then Nicole arrived to add to the fun...by then I was high on Benedryl.

All of us sitting and laughing and catching up. It was great if only we were at a good restaurant instead of Sloan. It felt like ladies lunching not visiting a chemo patient. Good day! We only got yelled at once for being too loud.



After the girls left Mom, Ali and I opened our laptops and got some work done.


Then Lisa Overton was super sweet to come visit after a root canal. She brought her friend Doug.

By 5:30 we were out the door and piled into Ali's car happily I felt completely normal. We hit PinkBerry and droped Lisa off ..then Ali got the Expressway. We were at Love Lane Kitchen for dinner by 9pm. The sweet happy faces and good food at the restaurant were a perfect end to a potentially super shitty day.

*Doug as he's meant to be seen. Like most actors Doug looks best on camera.

so now i'm bald..

am I still a
red head
carrot top
ginger
rusty
red
ms. cheesy doodle
pumpkin
fire head
big red
firecracker
strawberry shortcake
matchstick head
peppermint patty
heat miser
raggedy ann
bozo
ronald mc donald
red ryder... there was a guy on fire island who for a time actually just called me wagon.
ketchup head
red headed step child
fire crotch ...yes. that's all gone too. so the curtains still match the drapes.

or just a bald cancer patient?

a guide to shaving your head.

If you are a girl, and you have to get your head shaved at 41 years old and you are single, scared and completely clueless about how to handle the whole situation.
I highly recommend going to the Love Lane Kitchen summer staff pool party and having a friend bring some clippers.

Then after everyone has drunk 3 kegs of beer, eaten tons of hot dogs and played in a pool with your dog for hours. You hand the razor over to one of the coolest people you know (jennilee) and let 30 or so people in wet bathing suits crowd around you chanting "fuck hair" "fuck hair" "go jen lew" "go jen lew"..you let them all hug and kiss you and tell you how brave you are. Then make the wise decision to give the calmest confident girl (Cassandra a professional hair stylist) the clippers to finish the job.

When it's all done and your hair is completely shaved off, you laugh and joke around with all the people who have made you feel happy and not scared. You let yourself think about how thankful and lucky you are to know such sweet, warm, wonderful, FUN people.

I promise you will have a wonderful experience and feel confident enough to rock the bald out in public...at least that's what worked for me.