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.

hair today gone tomorrow

It must be said. This whole hair sitch is all quite ironic. There's no doubt I've been blessed with nice hair. It's thick. It has body. It curls. It's red. Almost daily I get compliments on it.
I've got unique and good hair. I'm just totally full of myself about it. It's fucking awesome.

But all week it's been falling on my desk, itching my back and every time I try to push a hair around my ear.. or just touch it ...it just comes out in my hand. What were loose strands at the beginning of the week ...were full clumps at the end. I was warned, 3 weeks after my first treatment, my hair will be gone. I've known that for my 2nd treatment on Thursday..I'll be just another bald chemo patient at Sloan Kettering Memorial.

Emily and I had plans for lunch on Friday, but it turned into a trip to the barber. Ali met up with us, so with my little posse and a the warm, generous, sweet guys at Love Lane Barber shop I now have a super short hair cut.



I've had to clean my sheets twice this week because hair is all over the place. This morning my pillow is like a furry animal. The funny little bald patches prove that soon enough I'll look like a scrappy cat who got into a fight with a weed wacker.

I'm just one step away from shaving it all off. The shitty thing is the worst part is still yet to come. I'm dealing with the imminent baldness..but dreading the loss of my eyebrows. They are the difference between looking sortof normal and looking like a chemo head.

Ok, so I know the hair has got to go. I've dealt with harder stuff and I can handle being bald. I've been collecting scarves my whole life and have hardly worn them. Here's my chance to accessorize in a fun new way. insert fake - looking at the bright side enthusiasm. Anyone see cool hats at the mall lately?

eyebrows

Soon, I won't even have my eyebrows.
I'm a bit obsessed, eyelashes and eyebrows are the difference between looking like a bald person vs. looking like a a cancer patient. I've thought about using eyelash glue and gluing my eyebrows to my face. Maybe henna tattoo? Or one of those fancy Anastasia eye brow kits.

I don't wanna lose my eyebrows.

migraine's suck

Wasn't quite myself this morning, notable since the past few days I've been feeling normal. I was a little emotional because every time I run my finger through my hair I get a bunch of thin loose strands woven between my fingers. My hair is falling out. It's enough to stress out the toughest cancer patient.
I guess it's stressing me out.

I was at work this morning and thought there was something going on outside bothering my eyes. Maybe a shiny truck going by or new rims of a car reflecting the sunshine. I looked out and saw the usual few cars parked in the lot, trees and the train tracks. Nothing shiny blurring my vision and it was an overcast day with a bit of fog.

It wasn't something outside, it was my left eye ball causing all the commotion.
I could only see through half my eye, the other half white, like my peripheral vision was cut out. Then I cupped my eye with my hand, and saw the tell tale flashing trails of light.. like lightening before a harsh rain and thunder storm.

I covered both my eyes with my hands and tried to breathe.. in\out in/out .. saying to myself no migraine please don't come today. But it was too late...the migraine was well on its way. I promptly called my sister Alison to come pick me up and take me to the hospital. I wanted an Imitrex shot right away. I have to get a prescription.

Ali was on her way..the 12mins. from her house to my office. Angela, Jackie, Judy and her two grandson's who were in the office visiting. They were now all concerned... trying to make me feel better. Jackie made coffee. Angela gave me water and Tylenol. Judy walked me to the dark closet where I stayed standing (with Charlotte at my feet) until Ali showed up.

After breathing and crying in the closet, I emerged to a game plan. Ali was getting the car while Angela a Judy walked me down the back stairs with a hoodie wrapped around my head to block the light. I looked like I was being abducted. Ali drove me home. Fetched some Excedrin migraine, called the nurse in the Oncologist's office and I thankfully fell a sleep for a few hours.

My last migraine was in June, during a PET scan. One of the worst experiences of my life. Which considering recent events that's saying a hell of a lot. I lost vision and ability to speak clearly for that one..but breathed deep and somehow calmed myself down. The migraine didn't fully come.

I realize now I should blog about this later. The experience needs to be expelled from my memory like digging a hole and burying it. PET Scan's suck post..to come.

But since then, it's been a good 10 years since my last serious migraine. I was working at Centropolis Entertainment and it came on without much warning. The sensitivity to light and impaired vision was just a few minutes until full on headache. I was taken to the emergency room - got the shot of Imitrex and it did it's job. To me it feels like the shot explodes the pain into a million pieces. The bad part is the super sore head the next day.

Before that.. I got migraine's fairly often at least once a year. The very first was at about 7. I was playing outside with my cat Snowy on a sunny day. The pain rushed to my head so quick that by the time I went into the house to tell my parents. I had lost vision and I couldn't speak. Immediately my dad scooped me up put me in the car and we rushed to the emergency room. I remember the ER being packed with people, we had to wait a long time to be seen by a doctor. I could barely see and was talking gibberish when someone asked my mother if I was mentally challenged. It freaked my dad out so much that he somehow convinced a sympathetic nurse to get us in to see a doctor right a way. The doctors asked if I was given LCD or drugs because I was acting so weird. I remember my dad talking about this afterwards.. and him being really pissed that they didn't treat the migraine right away and assumed it was something else. I woke up in a hospital bed the next day with a girl roommate about the same age. She was in her bed talking to me before I was even awake. Hello. Hi. Who are you? What's your name? Where do you live? How old are you?
I could remember nothing. I couldn't answer her. It freaked me out..and I apologized to her for not knowing my name and not being able to answer her. It took me hours to get my memory back and my head hurt terribly. To this day I can't remember her name, but she was in the hospital because a few months previously she stuck a pencil up her nose and the eraser came off and got lodged up her nose. She hadn't told anyone that, but she couldn't breathe right. So she had surgery on her nose. They found the eraser during surgery and she thought it was all hilarious. I thought she was an idiot.
That. I remember.

Another memorable migraine was at about 15. I was by myself in the house when I felt the half vision start to go. I knew by then what that meant and panicked. I started searching my parents bathroom for some pills...I didn't know what I was looking for, but thank god my mother has always been a fan of labeling and sharpees. I found a prescription bottle with the word Migraine on it..and popped two pills and hours later my parents came home to a completely trashed bathroom and me sprawled on there bed passed out. I later found out it was percocet. I remember waking up to them being wide eyed and confused and telling them all groggy that it was a migraine. My dad held my hand and looked at me like he knew exactly how I felt and how scared I must have been. Sadly, dad's migraine's lasted longer and the headache always worse than mine ..my other symptoms always worse than his.

Now all I can think about is Sage, my 9 year old niece. She got her first migraine a few months a go. Her and my sister Sharon spent an afternoon and evening on their bathroom floor in the dark. Sharon texting me with the fear and concern my father had for us when we got the headaches from hell.

Now I'm feeling better. The sensitivity to light not nearly as bad as this morning but my head hurts like it's bruised from the inside. I'm willing my body to calm down and not fear the baldness so much...there's nothing I can do about it and as Ali say's it's a small price to pay to rid myself of the cancer.

Migraine's suck. Cancer sucks. Hair grows back.
Breathe.

sunday sail and feeling fine.

This weekend I was mentally prepared for disappointment. I had been told that by about 10 days I would feel anything from severe fatigue to high fevers and the potential of hospitalization.

Saturday, I felt fatigue. I wouldn't go so far as severe..but it was like nothing I'd experienced before. The day was spent on the couch. Canceled my plans to hang out on the water and see my friends band who was playing on a barge in the cove.. boats were rafted up to enjoy the music. Sounds like a good time I know.. but I stayed on the couch.

At some point in the afternoon I made my self some lunch and my neighbors came over for a bit, but really... I was on the couch the entire day. Hours.. just laying there... feeling like my body had been filled with lead. And to freak me out just a bit.. my heart seemed to be over beating.
If I did anything ..walk down the stairs, go to the bathroom or sit up, my heart seems to not be able to catch up with itself. I was in bed and a sleep by 8pm.

Sunday, I had plans to sail. Haven't been out on the water in weeks and the sun was shining. The boat is gorgeous and my friends are fun.
First thing in the morning I assessed my heart. Got up, showered, felt fine. I mean like the opposite of Saturday...fine. I gathered my stuff for the sail. I felt fine. Made some oatmeal and my friend Joanna came over for breakfast. We had a lovely chat (wish I saw her more) and I still felt fine.

Kim picked me up at 10:45a and we were on our way to the boat. I'm still feeling fine.

There was hardly any wind as we made our way to Old Field, it took about two hours..but it was beautiful. We set anchor and jumped into the warm water. After a swim, we all made our way to shore. Kim and I on a dingy Ben and Joe pulling us as they swam. They're sweet.

We walked up the beach and through the vineyards to the Old Field "tasting room" which is a converted barn with old chicken coops. We got a bottle and some cheese and sat under a tree at a picnic table. The vineyard has a duck, a goose, a dog and about 45 chickens running about. By 5p we were on our way back to the boat. Ben, Joe, Anna and Perry swam..Kim and I in the dinghy.


The sail back to the dock was perfect and full of wind. It was a fabulous Sunday.

Today, I felt fine.

The only bad part ..I forgot to call Kris and wish her a happy birthday. Love you darlin'!

jr. is not a clunker

Jr. is my beloved 1987 BMW 528e. Purchased in Redondo Beach, CA 1996.

The other day I checked the federal website to see if she passed the clunker test. It was like the final question on Who Wants to Be a Millionaire. The suspense was killing me. The thought that I could get $4500 for her was obviously too much to hope for. She didn't pass. A clunker she may be.. a federally determined gas guzzler she is not.

I really don't want to let her go. Years a go when I made a decent salary and she had a few problems here and there... I couldn't let her go. Now.. she's like a leper. Things are falling off constantly. Her muffler fell out the weekend before chemo began.

Lynne and I were driving out of my favorite farm stand when the muffler took it's final bow. We pulled out of the gravel drive way and heard a screeching, thumping... bad noise. When I leaned down to check out the situation I saw half the muffler on the ground. I've seen hundreds of mufflers fallen on the side of road over the years.. I've heard stories of guys taking mufflers out of cars for whatever loud reason. I realized people drive without mufflers..why can't I. Just to be safe, I called my friend Seamus to double check that we wouldn't explode or anything. He said we were fine. So, I tried to yank it off. The muffler wouldn't entirely break off so I swung the broken end around so it was now poking out behind the car like a tail. I found a bungee cord in my trunk, secured it on and Lynne and I were on our way. Alan my mechanic will put in a new one. Nothing kills jr. I don't want to let her go.

Now it's two weeks later. Jr. has been at the shop. It's $500 to fix ...Everyone thinks it's time for me to get a new car. So the decision needs to be made..get a new car or just fix her. I've had a few other things on my mind so I gave myself a deadline to decide what to do.
I don't want to let her go.

It's Friday morning I've reached my personal car decision making deadline. I love that brown broken down piece of crap.. jr.'s not a clunker she's my baby. Maybe after chemo I'll look for a new car. I'm not letting her go.

i am not alone..

Tonight for the first time in a week.. I'm alone.
but for the first time in as long as I can remember.. I'm not liking it.

My birth sign. The sign of the Lone Wolf.

I dig being by myself, always have. But lately not so much. My mom was supposed to leave last night, but I didn't want her to. She stayed over again.. and I got my first good nights sleep in days.
This morning I woke up feeling ok, but was more than woozy, I felt really tired and I haven't felt 'normal' all day.

The plan was to take it a bit easier, but it was another busy day. I went to work until 12:30 then my sister Sharon, cousins Nancy, Scott and Charlie came to visit. The cousins are here from LA visiting NY. It was great they came out to visit me for a bit. We had a delicious lunch at Alison's enjoying her beautiful tree swaying backyard complete with naps in the hammock and lunch on her deck.
My 15 year old cousin Charlie has grown to be a handsome, witty, smart and comfortable in his own skin... great guy... and ties his shoes with ipod headphones.

We had our lovely lunch and they headed back to fire island and I went back to work.

Around 5pm my good n' pregnant friend Emily picked me up from the office and headed to my house. Where we promptly plopped our strange feeling bodies on my bed. Turned on the tv ..and gabbed about the past few days. Usually Em and I hit a restaurant or go for a walk.. on a Wednesday night. Today with her belly 6 months a long and me ..well feeling all wiggly inside and woozy. It was my bed.
As the prednisone hunger started to rear it's ugly head again.. Christine called and said she was bringing over pizza. Around 7pm Christine was over with slices for all.. she took off her shoes and we all sat on my bed and ate.

I was on my final bite of the second slice when Linda called to tell me she picked up groceries for me at Trader Joe's (you out of towners... the closest TJ's is 45mins. away. it sucks). Linda & Peter came in with bags in hand...filled with some of my favorite stuff.

We all gabbed for a bit.. and then everyone was on there way.
It's 10pm and I'm home alone for the first time in a week.
I am alone but not lonely.
I am a very lucky girl. Thank you!

Hilary........

Hometown: Massachusetts/Nantucket
Current City: LA
Birth Sign: Sagittarius
Attitude: Awesome
Friend: For Life

Hilary was in Mass. visiting family and took the 1 1/2 hour car ride to the 1 1/2 hour ferry ride (each way) to come visit me yesterday.
12:30 arrival.. 6pm departure.

It was the funnest, bestest, nicest day of sunshine, smiling and eating a girl can have. We met up with Jenni and Mike from LLK and their fabulous culinary professor Richard and a friend Sarah. All foodies. All awesome.

We started at Barabara Smithens vineyard Sherwood House.. It's an outdoor tasting room nestled among the vineyards. The tasting 'room' is a converted shed with air conditioning. Big enough for 3 people to buy a case 1 at a time. The bathroom... a fancy out-house. Vintage trucks..picnic tables and comfy rattan couches under tents just couldn't be a more perfect setting.
Wine. Delicious..as usual. I didn't have any..but everyone looked real happy.
again..the company.. Awesome.

Next we went to Love Lane Kitchen for lunch.. the original plan previously included Martha ..but we won't go there again. I had the perfect Lobster Roll. Others.. fish tacos, avocado,mango and chicken salad, cuban sandwich. Shared an amazing selection of deserts. We ate. We all chatted. Yvonne came and joined us. My mom joined us. Even Judy stopped by for a minute. A great long lunch.
Much to my joy.. today is the last of the 5 days of prednisone I finally understand the prednisone hunger ..I could have eaten everything this afternoon. I can't even do cancer right and lose weight. I'm gonna get even fatter. Go fig.

Then we stopped off at my house.. I explained the changes I've made, the painting, scraping, wallpapering and answered Hilary's questions. She's in the process of looking to buy a house in L.A. so I did have to answer her a few times. "Yes, Hil I have the whole house" "Yup, I get to use the WHOLE back yard" "Yup, that's my rent" "Yeah...it's like a real house". She even inspected the basement. To my mothers glee it was tidy. Hil loves the house. How could you not it's a whole house.

We quickly ran up to meet the gang at another vineyard. Macari Scooted in. Hil bought some bottles..and then I drove her back to the ferry.Hugging her good bye and taking pictures at the dock..I didn't want to let her go.

Hilary..Awesome!
More girls from LA need to come to the NoFo ...wink wink nudge nudge!

Martha Stewart

the treadmill still awaits. I'm not really counting the almost 4 minutes yesterday morning before work. The goal still looms. the bitch..still mine.

I did go into work yesterday though. My mom helped me carry my computer while I walked Charlotte. We walked the whole 200' into town to my office.
I was tired, and woozy but climbed the stairs, sat at my desk and set to get on with the day. Trepidations and cautious. Worked a few hours and then debated leaving the office but Angela was off to check the mail so her and I crossed the street to Love Lane Kitchen.

We ordered lunch. I didn't think I could sit up, I almost wanted to go home. But then.. I heard the news. Moments after Jenni did and a Ha Ha ...full 2 minutes before Mike.

Martha's people called.. they were coming to have lunch at the kitchen...Tomorrow.

If you don't already know. It's my spot that Love Lane Kitchen. I sit on the last stool at the counter closest to the kitchen, at least twice a day almost every day. I love the owner Mike, I adore the Managers Jenni and Kim, and Carolyn and sweet mama Carol and Chef Ben and Roaster Greg and George and Cory and Jaime and Lisa and Jazmin and preggers Laura and Kayla and Nicole and you get the picture.. they are all my Love Lane nucleus.
But, the place has needed some damn plants and a bit of "attention to aesthetic detail". and holy crap Martha is coming!

Finally my brain is spurred..the motors kick in and I'm feeling more alive.
Me: "Mike, we need plants in the pots"
Jenni: "Yeah, ok"
Mike: "Fine, I told you could do it months a go"
Me: "Jenni I'm going to Mattituck florist they'll hook us up"
Jenni: "Bye"
Me: "Mike here's my plan blah blah bl..."
Mike:(interrupting) "you said you'd do it ...so do it.. I don't need to ..."
Me: (dialing the phone) Mom..wanna pick me up? I have to get some plants Martha's coming.
Mom: (on phone) sure, be right there.

I speed talk my away through Mattituck Florist.. tell Pam the deal and she's helping me figure out the plan. The right plant the right pot. "Succulents I say"....(uh..obviously. Who's gonna water those poor suckers)
In a jiffy I've got plants and nick nacks and pots.. I go back to my office finish the day and get my work done. Head back to LLK and we start to get the place spiffy.
Jenni climbs, arranges ..we head back to the florist for more stuff.... aaah ..yay. martha's coming.

Mike get's the boys to groom the gorgeous back garden ..the big beautiful umbrella at the garden chef table is fluffed. I want a gate. A trellis.. Bigger pots. A centerpiece. I'm wound up.. The place has a vision.
Martha will eat her fabulous lunch, laugh, lean back off her chair pick a fresh heirloom tomato from the vine...sip her favorite local blend... praise Ben for his culinary prowess and she'll saunter off...full and happy. Visions of me posting pics of Martha and Mike and Jenni on the Love Lane Kitchen Facebook page dance in my head.

I walk home. Go to bed. It's 7pm.

This morning I'm slow moving again. But, I just can't wait around for my body to catch up with my brain. I've got work at the office and Martha is coming! I need another plant and pot for the top right corner of the restaurant..must go to town..must complete vision..

I walk to town. Tie up the pooch. My mom is there having coffee with a friend. I say hello, barely in the door..first thing I hear..."her people called and canceled". "She's been offered a private lunch at someone's house, they'd love to come in another time".

Love Lane Kitchen now looks as good as the food and service. This summer book the chef's table in the garden it's gorgeous.
Check out the website..I update the dinner menu every week.
Love Lane Kitchen | Create Your Badge

a walk into town..

it was the best i could do today..
the plan however was a good 10 mins on the treadmill and a walk into town. alas the treadmill awaits.

I thought my friend Ben riding his bike the approx 15 miles from greenport to mattituck and back to visit with me...or yvonne running 9 miles in the morning before coming to visit me...would persuade my sad, slow moving arse the two feet to the treadmill that awaits. but no.

however...my sister alison and I walked to town stopped at the cheese shop to pick up the fixin' for an incredible mac n' cheese and then fresh chocolate nibbs from the sweet shoppe for homemade chocolate pudding. It was good to walk into town, see the friendly faces I know and love and remind myself why I appreciate living here.

Ali cooked, I pretended to help. Yvonne kept us all company telling stories of her last trip to canyon ranch in miami ..or south beach ..or is it north beach.
My sisters, mom and I have been planning a trip post chemo. Maybe that's the spot? Knowing the three of us.. it will be a long time before we agree on a spot. I can't wait 'til it comes. I don't care where we go.

i ate some mac n' cheese.
i'm in bed.
it's still light out.
i'm tired.
my teeth hurt.
my jaw hurts.
my bones hurt.
i'm 80.
i can't believe there's a salt,baking soda, water rinse solution in the green pitcher i love to serve margaritas in. i want a margarita and sit on the deck and not be burdened with feeling like a slug.

tomorrow morning. that treadmill's my bitch. at least for 10 minutes.

second day in..

my pills are organized. i have a system. i have a laminated chart of when, where, why, how to take them.
I'm on the 5 day plan of prednisone. It tastes as I've so eloquently described as shit, cow shit, horse shit, dog shit then pee'd on by a homeless person who then sits and rolls around in all the shit. Then I get to swallow it. The taste lingers.
This morning I got up made my breakfast. Small bowl of cereal and a mini bagel with butter, and a glass of prune juice. When did I become an 80 year old ....oh wait it was thursday. I became 80, temporarily I hope but feeling 80 none the less. Freakin' prune juice. Man!

I bring my tray to my room. exhausted. I rest. I eat my cereal. I take my pills. I eat a bagel. I brave the prednisone. I drink the juice. I nap. I let my mother sleep.

I blog.
I rest.
I shower.
I rest.
I cut my hair.
I rest.

Linda and Peter came over with Chinese food for lunch..How sweet. We sit outside on the deck. It's lovely. The sun is shining. They're about to go out for a kayak ride in the bay.

Ali and Kenny take my trash to the dump. She is awesome. My mom is running about filling her time. cleaning, doing laundry and trying to make heads or tails of my basement. I only moved into this house in April. So surgery, and doctors and cancer and doctors and now chemo have impeded on my arranging and organizing of the basement. The house is completed. Painted, every drawer, every cabinet, every room exactly how I want it. The basement. A total shit hole. It reminds me of Monica's closet on Friends.
My mother is obsessed. I've begged for her to ignore it. She can't.. she won't. she just does exactly what I ask her not to do ..she's cleaning the basement and going through my crap.
Finally mom sits and eats with us for a bit.
Everyone is gone.

I'm tired.
I need to sit quietly.
I'm blogging.
I'm facebooking.
I'm woozy.

I'm back in bed. I can barely talk on the phone but I love hearing my friends voices. xoxo

my hair and a pair of scissors.

i'm nervous. it's always on my mind. this hair thing.
how freakish will i look without it?

My glasses broke the night I came home from the hospital. Fell a sleep with them on, like I always do. But the night of chemo and my hair falling out another facial thing needs to change. Damn it!
Thankfully I have a spare. Can't stand them...but I can see. I want my glasses. Big heavy hide my face a bit glasses. I like 'em.

back to my hair... Ali bought me a scissor. I cut a lot of it off. The nurses warned that it gets messy when it starts falling out. It should start thinning by mid week or next week so I'm beating it to the punch. Just shorter so it's not so much.. I'm thinking I'll gradually cut it down. Then maybe a shave. Who knows.

So I cut my hair. not a ton. but shorter.
Took the scissor and just started chopping. Super Fun! Highly recommended at some point in your life. If you didn't do it when you were in elementary school give it a go..if you did it ..do it again. It feels good. I'll probably have a nervous breakdown in a day or two when I look in the mirror but right now I love it...and I'm happy I did it.

A wig you ask? Not sure. Checked 'em out on line. Looked at a few. It's summer and I hear they are hot. I'm just not a wig kindof girl. But who knows. If I go to the Arts Summit for work I'll probably want something. We'll see.
I'm scared shitless. Who the hell knows. minute by minute.

post chemo weirdness but I'm feeling ok...

The night was tough. I was surprised to be so nauseous in the middle of the night. Hadn't organized my pills yet so was fast a sleep when the nausea hit. Took a pill. Was scared shitless and stayed up until about 5am. Slept until 9ish and I'm a bit up.

i'm a little woozy
i'm a little nauseous
i'm a little lite on my feet

and so this is chemo brain.
what's that thing called that holds water and liquid ..oh right a glass. yeah that's it.

ok. I'll sleep now.nap. yeah.

My cousin Bill and Aunt Marilyn came over. I got up. We hung out. I need a nap.

I worked a bit, various things on the computer. Helped on the phone with an office glitch. Jackie the awesome new person in the office is a dream. Sadly her husband died this year ..just a few months a go of cancer. She's been through all this so intimately and so recently it's a blessing to have her sympathetic capabilities around.

ok. I'll sleep now.nap. yeah.
Ugh! nausea. Blech. It blows. Zofran come to mama.

Ali, mom and I went to see Julie & Julia tonight. Loved it. Could have lived without sitting in the most uncomfortable theater seats but the film was great. We all identified with the characters so differently but yet with such passion all the same. So glad I saw it with mom and Ali. Happy to see Angela in the theater too.. love seeing her. It made me happy.

The plan was to get ice cream after..but i had to go home and to bed. We knew we'd all be starving after such a foodie film. Ali got us ice cream. We ate in my room a bit and then I had to sleep. It's late 10pm. I'm exhausted.

So glad I'm writing a blog.. I love all the phone calls and emails, texts, facebookings..but i'm tired. I feel loved.

this shit's fo' reals.

Chemo Day 1 it's Thursday.
R-CHOP
Sloan Kettering Memorial Cancer Center
It was a long long day.

Ali and I decided to take a perfectly uneventful yet cold 6:30AM jitney ride into the city. No traffic, no weird car annoyances just a bus.

I woke up at 6:02am
Ali & Kenny were at my house at 6:07am
I was dressed, showered and out the door by 6:12am
I got us bagels and were at the bus stop at 6:29am ..the bus was there. We were on time all was good.
We arrived at our stop 67th/3rd at 8:30am ..to what I thought was too early we walked to a diner, I pee'd after drinking tons of water. I sat down looked at my appointment book and realized I was supposed to be at the Oncologist office at 8:15am.
"we gotta go.." We picked up rushed and walked the 3 blocks where I neurotically showed up over an hour late.
I gave blood.. pee'd in a cup. Met with the Oncologist who kindly, told me everything he thought I needed to know. I asked some questions.. innocent questions that from my research seemed intelligent and thoughtful. Questions that I wanted answers to...
"what are my CD10 and CD20 nodules"? "Where are they? What do they mean"?
what's my risk..low or intermediate?
What vitamins should or shouldn't I take... "NO VITAMIN C" was the only response...all the questions got a resounding snide answer-less answer with an attitude and fully enunciated "what you need to know is that I'm taking very good care of you"
It seems my research and questions will have to wait. I cried sitting there feeling stupid and belittled..but didn't blubber just felt small and insignificant and completely out of control of every little thing that was happening to me, my body and potentially my future. While Alison and my mom looked on. My mom wanting me to be thankful and patient and kind. Alison ...I'm not sure. She probably didn't want me making an ass of myself..and getting bitchy.
I didn't, I tried to make him laugh.. he looked at me warmly and sat me on the table to check my glands. He poked. He looked me dead in the eyes and said he'll make me better..I whispered "you promise" He just looked at me.

Next we saw Nurse Nancy..who I had the pleasure of speaking with the night before the port surgery. She was sweet and kind and mellow. Explained to me what all my R-CHOP drugs are..what nausea medications I'd be taking after plus the 5 day prednisone schedule et al. She answered questions, gave us information and we were on our way down the loooong hall to start my treatment.
I stumbled and cried walking down the hall of doom. To begin this new journey. What I had no idea about was that it would be a 1 1/2- 2 hour wait.. The treatment area is busy. Packed with people waiting for there chemo. I have no idea how long we waited in the semi cold drab but not awful waiting room? 45mins, an hour two hours ..no clue. I was petrified.
We were all escorted with our bags.. Mom and I didn't know if we'd stay in the city or not so we were wheeling around luggage. Who knew how I'd react after treatment.
Me with my big pink wheeler luggage. Just in case I had an adverse reaction and had to stay near the hospital..we were going to stay at Sharon's while they were all on Fire Island.

We were brought into a shared 4 stall room. With one very loud tv and an assortment of various guests. It was my first time. I had blankets and books and my computer. The nurse was lovely. After a few minutes of her arranging her gear and setting up the inevitable bags of drugs..she looks up and goes.. "wait..this is your first time. You only get one first time. You should be in your own room". I profoundly agreed. Mom agreed and Lynne who arrived to make me smile also agreed. Ali was off getting us some sandwiches, but she most definitely would have agreed.
Nurse Joy..who is lovely. Sauntered off to find me the private room.
She was back and off we all went, wheeler luggage, bags, books, computers, beverages and all.... into a private quiet non lit lovely room. with a big window.
I was happier,calmer and feeling ok.
R-CHOP is ready to begin. First..a lovely drip of Benedryl that sets me into a twilight slumber of in/out conscientiousness. I don't mind this at all.
The stops and starts..are over the first drug is the "O" why it's O when it starts with a V I have no clue. It's a bag of Vincristine it's a heavy concoction made partially from the Rosy Periwinkle plant. Even though this is what causes...neuropothy, hair loss and a series of other serious side effects. I feel comfortable that it's derived from a plant and it's been used medicinally for centuries.
The 2nd is "H" Doxorubicin why H.. no clue. This is what potentially could reek havoc on my blood cells. It's delivered as a "PUSH" 3 tubes of pink skin irritating yukky. If it gets on the skin it can burn it...and it's being pushed into my veins. Yahoo... This is what can also cause mouth sores so I am supposed to rinse my mouth out with a salt, baking soda and water solution.
The emotional fun of this drug is the possibility of early menopause..yeah! like I'm not enough of an emotional biatch. bring it.
Next is "R" Rituximab or Rituxin. This is the so called miracle drug that's been saving lymphoma patients for about 25 years or so now. It's intense...the immediate side effects are a bit worrisome and this is the one they all seem to watch out for the side effects of more seriously. By this time I'm pretty sleepy and not so aware of what's going on ..the benedryl has me out. I do wake up and feel as if millions of fire ants are breeding in my mouth. The nurse stops my drip of R and let's me rest for 45mins. I sleep. I wake up to her starting again at a much slower rate.. all is fine except my mouth and throat are dry. Not like any dry mouth I've experienced before. It was like someone cut the bottom out of a dixie cup and shoved it in my throat. Dry.
I was up getting out of my woozy state. Alison was uncomfortably a sleep in a chair. Mom was on her computer and Lynne had gone back to work. My mouth was dry and I was texting Jules..she mentioned the episode of Sex In The City when all the girls are eating ice pops. I wanted an ice pop stat. Mom was off to find the cafeteria, Ali went to the office..her and I were texting about how she'll never find her way back to the room. Mom found me a strawberry froze fruit. The woman scored. It was the most delicious perfect thing ever invented.
While I had the pop, Joy plugged me with the next bag of "C" Cyclophosphomide.
This one could cause a stuffy head and a bad nasal blockage. I don't get that. I get a sinus headache. Joy slows down the drip and I'm fine.
The bag is about an hour. Ali heads back to the hospital.
Finally our day is ending.. the hospital day is over. I have my bag of pills. Joy sends me on my way. It's 8pm.
I'm tired. Don't even put on shoes. Socks are fine.
We pack up. Ali and I find our way out of the hospital.
Mom sweetly fetches the car. Meets us out front.
The three of us head on home. Two hours to the North Fork, Charlotte and my bed. Thankfully there is no traffic on the LIE. I'm in bed.
Day 1 is done. We'll see what happens next.