Wednesday, June 30, 2010

Rad

Rad is on my calendar TOO often. I'm tired of schlepping down the
highway to my appointments. Tired of coming home and being too tired
to do anything useful.

Today I detoured for some insanely good pizza. The place is called I
Love NY and they aim for pizza just as good as you'd get down in the
city. I like the one with slices of tomato, ranch dressing, and bacon;
or sometimes the philly cheese steak and onions variety Yum. Today I
had BOTH. When I used to drag some of my coworkers there they would
get the buffalo wing variety. No tomato sauce. Just bits of chicken,
hot sauce, and some sort of cheese...

After two slices of pizza, clothes shopping should not have been
nearly as much fun as it was. Things FIT!! I found things I liked that
were on sale! I kept looking for Demi Moore's boytoy to appear and say
I was punked.

I have been wanting to buy some clothes for a while. I've been wearing
a couple of pairs of pants I got just before Christmas ( I wore one to
my job interview after finding out it was business casual there) and
they are now very loose. Like, a size or two too big. Don't forget the
belt.

I'm not sure what the droids will do if I don't wear the same three
outfits over and over anymore. I don't want to alarm them...

Saturday, June 26, 2010

One last technical shot

This is approximately what I see over me while I receive radiation
treatments. (The tiny round circle is more like over my navel, so
rotate this image accordingly. Numbers are projected out of that, onto
your body, and that helps Tech line me up correctly every time)

The slices of metal are motorized. It's actually pretty fucking cool,
as far as Things That Suck... while the radiation is coming out, they
move from a more open shape with a few straight sides, to a smaller
one (not at all like this weird shape actually shown) and then farther
open again but yet another shape. It's individually mapped out for
each patient, and I have five tattoo dots they use to align me.

The whale

This is the machine that I fell asleep under the other day. Say hi to
the nice tech who didn't laugh at me, and always compliments my shoes.

Doesn't the machine look alive? Head bowed(see the eye shape?), arms
spread wide to wrap around the unsuspecting Tech... because she would
make a nice crunchy midnight snack... LOOK OUT!!!!

Hanging around

...watching the world cup game, relaxing a bit.

Here's another photo from my Day In The Life Of a Wedding
Photographer... This is, of course, the bridal gown, along with the
dress worn by the little flower girl in my previous post. Thanks for
the post processing, Drew!

Sunday art

Yes, it's Saturday morning. Shhhhh. Don't wake them up!!!

This is a picture I took when I played wedding photographer for a day.

I don't normally put photos I have taken of other people's children
into my blog. Some parents very rightfully so don't want their
children's images online. I will make an exception here because I'm
not using her name or face.

I have an adorable picture of the ringbearer asleep on Dad's shoulder.
It hurts me to not share, with his golden brown curly hair... Sigh.

The flowergirl was very tiny. I believe she was two. Her grandmother
brought her to the suite and slipped out while I was showing her that
the white purse was full of silk flower petals, and Look! We can
sprinkle them, and pick them up and put them back in our purse!

She was VERY quiet, not knowing me, and the bridal party was just in
the early stages of hair and makeup. So at one point she walked over
and peeked in on everything that was going on, and I took this shot.

Selective color can be cliché but in this picture it seems to work
well. I like the way it got rid of the chaos of objects of all
different colors that were scattered around her. Plain black and white
didn't work for me because of all the "stuff". I might drop the
saturation down because wowie, that shirt is a bit bright this morning.

Take a picture today, of something or someone you love. Tell them
Carly says to say cheeeeeeesecake.

Friday, June 25, 2010

Surveillance

I want to go where you're going, whoever you are...

I need a kayak ride but I don't have the endurance for one about now.
I walked up a small hill today and almost needed a medic! However I
did stay awake for radiation.

Thursday, June 24, 2010

Letting go

There is a moment that I have experienced several times just after the
techs say "OK, here we go" and walk out of the room to hit what I'm
sure must be a giant red button.

Digression #1:
Nevermind that this is a new state of the art radiation machine with a
giant window over me that reveals lead "fins" that slide around on
their own accord, opening carefully to make various shapes and
patterns while emitting the dose of radiation.

(Digression #2: Dammit iPhone. Stop changing patterns to Patterson.
Son of a peach pit I hate autocorrect sometimes.)

Ok. Back to the moment. It's a tiny flash of COMPLETE, TOTAL PANIC.
Where that flight instinct rears up and I flash on "Hell no! I have to
get off this table and get out of here!"

I am prepared for it now. The very first day, I think I might have
jumped ship for real, if I hadn't had a good cry in private right
before that appointment. Caught me somewhat off guard, it did.

Now I know I will have that brief flash of fear every time, and when
it hits I just squeeze the hand grips a bit tighter, and try not to
move off the edge of one shoulder blade.

(Digression #3: The techs position me, and I understand why, but it's
NOT comfortable. The first thing they do is slide my hips toward the
right side of the table, then tug the sheet I'm on, right by my waist,
straight up toward the ceiling so I am on an edge of that left
shoulder blade bone. For kicks the other day I said, "let me see if I
can get my shoulder into that alignment without you moving me". The
tech laughed when I did; I was SPOT ON with the tattoo marks and where
the lights from the machine needed to hit. )

But it's easier to "lay heavy" and not try to help them move me -it's
better to just let the techs do their adjustments. My one lucky guess
aside, they are quicker and I can't see the measurement numbers being
projected onto my body.

There has been a fair amount of surrender during this process. Letting
myself stay in bed to rest and recover from surgery. Letting nurses
dress an open wound. Finding a way to let the time drift by when sleep
won't come. Staying home watching tv with one eye open while the world
races by just out of my reach. Letting other people cook and handle a
crisis or two for my children. And now, surrendering to the machine,
even though that big grey whale scares the crap out of me for those
brief moments. Letting it do its job and not running in fear.

Every now and then however, I perhaps "let go" a little TOO MUCH.

I fell asleep on the treatment table today.

Yup.

Too tired plus being on my back with my eyes closed... I startled
awake when the techs came in to adjust me for the second part of the
treatment.

I drifted off again, while they were sliding the table around in tiny
increments. I sort of twitched awake just as she touched me. Ooops.
Busted.

They left the room and hit the big red button and I FELL ASLEEP FOR A
THIRD TIME. Out. Cold. Zonk.

It's all about letting go.

Monday, June 21, 2010

Over the rainbow

Five years ago this summer, I was in Lake Placid. I was walking down
the quiet streets near the Mirror Lake Inn after dinner. From a nearby
house I heard Israel Kamakawiwo'ole, (who I totally just had to
google, may he rest in peace but what is up with that name?) singing
"Somewhere over the rainbow".

The song arrangement is mellow and serene, but it made me
overwhelmingly sad. I wanted to cry, standing right there in the
street. There were negative things going on in my head, and it
amplified them.

Fastforward five years...

I came late to the "Glee" bandwagon. I was dimly aware of it while I
was sick. I watched part of the next to last episode while the males
around here rolled their eyes and did everything they could to get me
to change the channel.

I watched the season finale, which ended with the teacher singing the
same song to his students. This time, the song felt very comfortable
and I couldn't immediately explain why, but it felt like a bookend for
me.

In the past I have definitely gone through stretches where I complain,
complain, complain. I don't want to be that person anymore.

When I first got sick my friend gave me her copy of The Secret. I read
a few pages and got what I needed from it: put positive out into the
world.

Since being diagnosed with bilateral breast cancer I have tried to put
my feet on the floor every morning and hope for the best. I have
focused on getting things done one step at a time. Surgery. Done. Part
one of three treatments. On to chemo. Done. Now radiation.

When I had to go back into the hospital (an incision opened and I
needed IV antibiotics) I focused on feeling the love people were
sending to my phone. A couple of my favorite people snuck in to see me
and I delighted in having them just sit on the side of my bed and hold
my hand.

My facebook friends have been there 24/7 for me. Every day I wake up,
put SOME sort of cheesy little cornball Pollyanna sunshine status out
there, and get at least ten replies, scattered across the day, and it
helps me to feel positive.

I have been feeling physically very good the last few days compared to
mid-chemo. So mentally, I'm doing cartwheels.

Today at my radiation appointment I parked and recognized the people
parking next to me. The husband is the one in treatment. His wife
struck up a conversation in the waiting area by asking me how I was
managing to drive myself to my appointments every day. Because I am
bald, they assumed I was getting my chemo NOW because that's what some
people do - concurrent treatments - based on their particular
illness / stage etc.

It felt good to be able to encourage someone, to say, "you will feel
better before the next round. I felt as bad as you do now, and I never
could have driven myself here just a couple of days after chemo, so
don't be too discouraged about how you feel today."

We talked about food and when I said "try eating salmon" and he perked
up and said "that DOES sound kinda good" I felt like I had just hit
one out of the park.

When I am farther down this road, I am considering whether I would
like to either retrain for a career that combines technology and
treatment, or at least just volunteer in some way to help people
through this process.

Somewhere... that's where you'll find me.

Sunday, June 20, 2010

Super Carly

Having conquered cancer (in the nearish future), SuperCarly will soon
bring perfect order to her household.

Magical things will happen!

Children will not leave pulsating toothpaste blobs all over the sink.
They will do chores without being told! SuperCarly will never find a
half eaten bowl of cereal or clothes that have been in the washer
getting sour for two days. (if she /should/ somehow happen to find one
of those things she will be SO ZEN IT JUST WON'T MATTER...)

She will remember to send her bills in on time, and finally catch up
on printing digital pictures. Her desk will be a shiny piece of
furniture and not a large heap of papers awaiting attention.

She will either learn to play the guitar she has had for 30 years, or
unload it on Craigslist, since a friend re-strung it for her a year or
two ago.

She will get out of bed on time in the morning, get to work early, and
she will also bring a healthy lunch every day. Of course!

I guess it won't be this easy. But it will be nice to have more NORMAL
problems than "what is this little bubble on the white of my eye and
will it get worse? Is it from the chemo?" and or "when will my skin
get red and peel from radiation? Can I ever wear a regular bra again?"

But I guess if I had that Wonder Woman outfit that last one wouldn't
be a problem, huh?

Saturday, June 19, 2010

Take me out

So, little league game tonight. A three year old boy I sort of know
was climbing around the bleachers near me and stopped, looked me in
the eye, and asked "hey why are you wearing that?"

I've been wearing chemo scarves from an Etsy store called English
Gardens. They're hats that look like a tied bandanna but they are
sewed so theyre much easier than tying an actual bandanna when you're
sick.

It was almost 90 today and sweaty wig sliding around on my head? No
thanks.

So obviously Noah had figured out I have no hair and wanted to know
what that was about. It made me laugh, because he's a cute little kid.
I pushed the scarf back on my forehead said "I have no hair and my
head gets cold" and smiled at him. He gave me a wild eyed look and
took off.

Twenty minutes later he marched up to me again. "Why don't you have
hair?" His grandparents were right behind me and I think they plotzed
a little. Without even really thinking about it I said "oh I was sick
honey, but I'm better now and it will grow back. Wanna see? " I
whipped off the scarf completely and he kind of stared, like
"woahhhh". I have some white peach fuzz and he took that in for a
split second, finally speechless. It made me laugh.

A long way to come from about six months ago (the day I got my
diagnosis) when I sobbed all the way down the northway in my friend's
car because I was so afraid of chemo and losing my hair. I still hate
being bald, I'm tired of wearing an itchy wig, but I am not as
bothered by people I don't really know seeing me in the bandanna at
least.

There are a couple of people that I still don't want to be bald in
front of. I don't want to look old and sick and, well, unsexy perhaps
isn't the right word but I'm reaching for something about feminine
pretty hair. I used to get random complents from strangers about the
color of my hair,etc and I miss it like an old friend who has moved
across the country suddenly.

I also can't bring myself to wear a bandanna at work because there are
so many twenty and barely thirty year old beautiful girls. I don't
want to be the old weird bald chick that people don't even know, and
they notice me only because I'm bald. I guess I don't want THAT to be
the way I get on people's radar.

The funny thing is that a few people have said I have a pretty head
and I truly don't get it. I look like an egghead to me, and that's not
fishing for a compliment. It is what it is.

My friend asked me last night if I wished I was back at the bank. I
don't think so, because while I have a few friends from there I love
dearly, I would be too annoyed by a couple of people to be comfortable
in scarves or without anything on my head

My legs have a bit of white fuzz, but now my eyelashes are falling
out. Enough! I really do want my hair back. Follicles, woud you please
get it together??? Kthanx.

Tuesday, June 15, 2010

So let's see. As I get progressively worse at updating my blog,

Radiation is much easier than getting an iv, having poison pumped in,
and then getting drugs that make you hurt all over. I'm doing what
they said as far as skin care and hoping for the best. Brian, who
draws on me regularly with a Sharpie, is explaining the (new, state of
the art) machine to me, so by the time my treatment is done I will be
a rad tech too. Isn't that how it works?

If the machine is so new, I want to ask, why is it painted gray like
it was built in 1942? I also need to ask if they have given this
machine a name. It's so very cool the ways parts of it spin around me.

I brought fudge yesterday because I am a giant suckup and it's always
served me pretty well in the past. The nurse I gave it to seemed
pretty darn delighted. Next, scotchies. Best cookies ever. When I feel
better. Mama's SO tired.

It's probably not good that we all stayed up till midnight with Suzy.
But, we were watching Bachelorette and laughing in horror and nobody
wanted it to end.

Please text me in an hour and wake me. Kthanx.

Saturday, June 12, 2010

Rain rain

Rain, rain... Go away... I am tired of chilly gray weather.

I planted these just a couple of days ago.. Maybe 2-3 days. Now I
have to figure out where to stick about 12 sunflowers.

Wednesday, June 09, 2010

Hit me with your laser beams

Went for my pre-radiation xrays today. This involved lying on a thin
table while green lines of light were aimed at my body. Parts of the
xray machine moved around me (VERYclose; it was nice that the techs
prepared me for it and told me that nothing would actually hit me).

There were times I wanted to giggle. It's so weird to be flashing so
many people and have them nonchalantly talking about what lateral
angle the machine is set at on this side.

It didn't suck that there was music. Thy must have dialed in my age
because it was Foreigner, and other stuff from my high school days.

At one point I think my doctor was almost dancing. I could sense him
moving off to my left and the techician laughed at him. It was late in
a long day and he was tired and a little loopy.

I am grateful for the care I have received. These people all seem so
confident and capable and they also seem to truly enjoy their work. I
am fortunate to be able to pay for it, more or less. My insurance
isn't perfect but I have some at least.

In about seven weeks I can try to reclaim my own schedule. For now I
have to go here, go there, when my appointments dictate.

And lastly, I am FREEZING. We are having un-springlike weather and I
hate it. Boo!

Monday, June 07, 2010

Yes

As a matter of fact I DID buy them because the box is cute. And they
were cheaper than the grape tomatoes right next to them.

The farmer's market starts this week, which will mean real fresh
mozzarella, and I'm just saying, STRAWBERRIES, people. I have biscuit
mix. Yessss I do.

Sunday, June 06, 2010

Bring on da funk

I'm a little worried about NOT being able to use real deodorant for
the next two months. I mean, really. A salt rock? Oy.

But radiation is all about skin care and not using things that will
worsen the downside of using technology to prevent those nasty little
tumors from coming back. So pure Ivory it is, and I will get me some
all natural aloe vera gel later today.

As it turns out, I will even have some side effects high up on my back
upper right shoulder because of the field of treament. (Hearing the
nurse more or less say "the radiation will go right through here" and
tap that area was FUN.)

After my initial surgery, both of my underarms had incisions for lymph
node biopsies, because I had a tumor in each breast. I was grossed
out by myself until Suzy suggested putting dab of fragranced deodorant
between my shoulder and collarbone... Kind of a vapor screen, if you
will. She also swore that I didn't stink. What an awesome sister.

So, hopefully people will not quietly inch away from me during the
next two months. (We won't even get into the advice about not wearing
a bra, because I don't want your brains to explode.)

It's all pretty amusing if you think about it. Not brains exploding,
but little dot tattoos and rock deodorants and worrying about smelling
bad. Silly, really.

Sunday art

Ok. I'm not kidding myself, these aren't good. Is it a man or a zombie
skull guy? Just roll with it. I have tatoos now, yaknow. I'm not sure
how to even SPELL tattoos properly, or that five dots ACTUALLY count.

But anyway, I bought a little app for the iPhone called Eastern
Drawing and I'm having plenty of fun with it.

You can use ink of whatever color you like, select the opacity and
brush thickness and whatnot, and you can use various paper designs
included, or draw on a solid color, or even a photo from your own
stash on the phone.

Hopefully when I'm feeling better I will not need iPhone apps to
entertain me quite as much.

(I did share Angry Birds with a coworker, as I may have mentioned; he
has now lost countess hours trying to get three stars on every level.
I am happy to PASS every level. )

Friday, June 04, 2010

Apparently

It's national donut day. Or so I heard. All I know is that it's good I
didn't know how good THESE are or I would have had five or ten.

Bummer with chips on top

Tomorrow is the Freihoffer run and I wi clearly NOT be there. It pains
me.

I tried to walk up a hill the other day - I used to run up it and tap
the mailbox at the very last house. The other day I couldn't run up
it; I actually made it to the first house (WALKING was all i could do)
and stopped to rest, and heard my neighbor calling to me, so I walked
back down to her and we walked on flat parts of our neighborhood for
just a few minutes.

I am frustrated, now that the weather's so nice. Tired of being tired.
Tired of feeling like I dropped out of the planet for a while; wantig
to catch up.

My doctor says I will be anemic for a while; nurses say IN AUGUST I
might have more energy. Nononono! Not the answers I want.

Wednesday, June 02, 2010

Chemo - done

I cracked up my oncology doctor today by showing him Angry Birds. That
game and Spin Art have kept me entertained through many a sleepless
hour, whether due to surgery, chemo side effects, etc. He said that if
everyone would tolerate chemo as well as I did, he would prescribe
iPhone apps.

I have to wait on one test result to see if tamoxifen is right for me
(some people don't metabolize it well, and there are many different
opinions but HIS is to move on to other treatment that includes
forcing early menopause. So, yay. Suspense. )

Long day

CAT scan today, complete with several sharpie marks so that some
department within my radiation oncologist's office can plan angles and
so on.

It's peculiar to have a stranger putting stickers on your chest (they
show up in the cat scan to mark things like incisions) and then having
said stranger drawing on you. He thought I was kidding when I asked
for a sticker for my scrapbook. Oh well.

Tattoos were part of the package... Five tiny needle pricks with ink
to make small dots of Owwww that all bled. Glad I wore a black t-shirt.

Still anemic, very tired... Napping on my porch.

Tuesday, June 01, 2010

Dear blog

I'm sorry I ignore you these days, blog. There was the cold I caught
after my last round of chemo that never went away, and the itchy hands
and feet that still come and go.

There was fighting with my temp agency last week to get a paid
holiday, and fighting with the hospital that I did pay a bill in full
because I called and got a prompt payment discount and PAID PROMPTLY,
and mixing up my cat scan appointment with the cardiology one.

Oh, and going to family gatherings which I've avoided for a while,
(and remembering WHY I wanted to avoid them for a while) and trying to
clean out all the STUFF around here in piles, and just making more
piles (anyone want a guitar?) and killing spiders, especially a REALLY
BIG one I tweeted a picture of today.

I walk around the park about 10-15 minutes a day now, and then I lie
down flat from exhaustion and watch tv and speaking of tv, I have
watched the LOST finale twice (crying most over: Claire and Charlie.
And dammit Kate was hot in that dress and heels)

And today I was busy calling the credit card company(not Big Red, my
other one) to beg them not to jack up my rate because I was two hours
late with my online payment (dammit dammit dammit) and finding out
they can't anyway because of the new legislation I missed... Yeehaw.

See? Crazy. All of it. A really, really big spider. You should have
heard my daughter just whimper in terror. The damn thing's body was
the size of a square postage stamp. Black, no color or markings.
Fuzzy. WTF was it???

And I watched Glee for the first time and was all "Meh" and Mr. hated
it but what does he know, he likes Hell's Kitchen. And there's a new
cooking channel, only I can't figure out where it is.

I bought a few plants for my garden and they promptly wilted and
threatened to head for that big garden in a sideways world where I
don't kill plants. But I love walking through a garden store. Or a
kitchen store, or... Hey! Things don't taste like sour milk 24x7
anymore!!!!!!!!!

Umm... That's all I have. It's not you, blogger, it's me. You're five
and a half now, blog, can't I trust you on your own now and then??

Things will get better... right?

I distinctly remember a day in... maybe February?  I remember the moment, but not what day it was. I was sitting at work thinking about plan...