Wedding recap

As I mentioned in my last post I was doing some wedding photography to
help Andy out Saturday.

Friday we went to the rehearsal so that we could check out the location.

I noticed a guy with two cameras around his neck and joked to Andy
"he's going to be a problem tomorrow." I figured he was somebody's
uncle. I'm slow, it's chemo fog. I will use that excuse as long as I
can.

Saturday came and I went to the bridal suite to capture the "getting
ready" stage. I was a wreck because the light was horrible. I had
visions of the camera battery dying before the ceremony.

While I was taking a few shots of the bride's dress hanging and the
bouquets and so on, I noticed there was no Bridezilla, but the Mother
of the Bride was IN CHARGE.

Now, we were hired by THE GROOM. So MOTB was terrorizing the
bridesmaids (things like "you realize you're the only one wearing a
necklace, right?" and gnashing her teeth that one flowergirl's mother
had used tiny silk flowers instead of The Headband We Made.)

I was standing next to the bridesmaid who was carefully clenching the
ringbearer pillow because she was TOLD to hang on to it. Then
Mommyzilla took her opening shot at me.

MOTB looke at me and said "at two o'clock 'Frank' will be here. I
hired him to take a portrait of me with my daughters."

I immediately realized that Frank was Uncle Camera Buff and he was a
Pro. Shooting THIS wedding. Ooooops!

More importantly, Mommyzilla wanted to fight. But I put on my best
southern charm face and said, "oh, that's so NICE!"

It was meant as a sweetly phrased eff you that would leave her no next
move since I wasn't arguing with her. It seemed like it worked -
Checkmate!

I have to say, I learned a few things from Frank about how to stage
some of the group shots, and he was very cool about letting me use his
shots. He even came looking for me when they were about to cut the
cake. It was nice of him not to throw me any elbows at all! :)

I could have done without the guy at my table for dinner who noticed
me wilting a little bit (no lunch, bad Carly) and DRUMMED ON THE TABLE
to get my attention when I was resting my temples on my fingers for a
minute. "You look like you're about to fall asleep!" he scolded me.
And then stared at me off and on all through dinner. Eff YOU darlin,
I didn't eat lunch and I have itchy hands and feet from the chemo I
just finished last week and I haven't slept through the night in I
don't know when...

I should have fed him to Momzilla.

Weddiing belles

Had an up and down week. Back to work, then home sick for a day with a
cold that has decided to linger.

Today I am a wedding photographer. Drew is taking pictures at a
friend's wedding and he rented a camera so that I could tag along - a
Canon digital rebel. Sweet! He assinged me to take pictures of the
bride before the wedding. Good thing it was me because she was pretty
much naked when I walked in. Awkward!

Little things

I have a thin white line near the moon on each nail, for each of my
first three rounds of chemo. Like rings in the trunk of a tree. I'm
sure eventually the fourth will appear. They're splitting and peeling
and it's fun, really. I put layer after layer of nail polish on them
to hold them together, but I usually have nail polish on anyway so
that's not too bad.

Today I went to church. Climbing the stairs to the loft left me
winded. I'm a little anemic and that gives me the endurance of your
great grandmother. I sat through most of the songs - it was "sing OR
stand". But that's ok too.

This afternoon I potted some plants to hang out on my deck. I also
hung my dragonfly lights. (five strands, one extension cord, and chemo
brain. Yeah, just TRY to do it like I did last year!!!) I had to sit
down many many times... Using a stepladder didn't help... But it is a
gorgeous afternoon and I'm so happy not to be sick in bed.

Yay spring! Bring on summer!!

New start

I'm sitting on my porch in the sunshine happy to be feeling "ok".
These are tiny pine trees I am trying to grow from seed. We'll see how
that goes....I not the best gardener.

Forced myself to eat, dragged myself from bench to bench in the park
where I used to run (will start again as energy permits while I get
radiation). Feeling a wee bit better hour by hour.

Now I am trying to figure out where to start "spring cleaning from
hell"... My house is kind of a disaster.

I guess I will FlyLady it. If you've never heard of her, Marla's
philosophy is that if your house is a trainwreck it didn't get messed
up in one day and you can't fix it in one day... So working toward
simple routines, plus fifteen minutes a day of chipping away at your
clutter, is the basic approach and that seems doable now. I don't do
things exactly like her - Drill Sargent Carly is about to return
because no one did ANY housework this morning and why should I do it
all?
.

It's on

So recovering from this round of chemo is not any easier than it was
for the others of course, and I am pissed. Look at this bruise! That's
where the iv was. Nice huh? Geez.

Please pardon me while I have a little pity party ...

I am aggravated that my stomach is feeling worse today, it's very
sluggish and that's painful and so I don't WANT TO EAT - And I have to
eat or I won't feel better and I will lose a bunch of weight again and
feel even worse. Right? Irony. It's what I'm choking on. I just forced
down some food... I look forward to enjoying eating again. In a week
or two... :::Bronx cheer:::

Oh, and I might be getting a sinus infection. (insert a few more rude
words). And/ or the mouth infection is returning too!! Wheeeeee!

I am so OVER this whole sitting around feeling crummy and not doing
anything...

I am on my porch trying to rest and get fresh air. I am SO BORED WITH
MYSELF. I don't want to read or watch tv or do anything - not that I
have the energy to lift anything other than this phone. I would love
to go for a walk but really don't want to make a fool of myself
passing out because I'm so weak. :::: cue mini temper tantrum::::

Dear CarlyShell: get with it. Work with me. Seriously. Enough. We got
off easy, let's move forward. I want to be done here.

Self portraits

I finished my last round of chemo this week. The nurses gave me a certificate, (which I don't know how I feel about really - frame it? not so much...) , and blew bubbles at me, and sang a cute song that made me smile, and I avoided the ritual of hitting the gong that is right outside the door and sounds like a death knell to me. The idea of the gong is that when your chemo treatments are done you strike it once for each round you endured but the whole thing made me wildly uncomfortable and fortunately for me it didn't come up. I slipped out with my friend and walked right by it.

I have been unloading today emotionally, it has been ranging between weepy sobs of relief that it's done and anger at having to do it all and a small burst of cleaning fueled by the frustration with everything in my life that's been on hold this year. Very small bursts.

I also pulled a bunch of pictures off of my phone today. I take pictures of myself often. It's been a way to cope with the changes and to try to get used to how I look now, and a tiny way of still photographing regularly even when I don't feel like myself. Also, when I feel wretched, I force myself to smile, and I take a picture, and I send it to someone, to try to convince them or maybe just myself that I'm all fine and hunky dory, thank you very much. Fake it till you make it, has more or less been my approach.

Some of the pictures are on flickr... and this is a peek at the set, but there are comments for many of the pictures explaining what was going on each day.

Get ready now

Haven't updated in a week; busy with things for the kids and cooking for school and singing for first communion (dear parents... when Stanley starts to play, please Shut TF up. You are in church, it sounded like Grand Central Station. Shut. Up.)

Tomorrow is HOPEFULLY my last chemo day. I woke up yesterday with a cold and was in tears thinking, this will really fuck up my medical schedule for the week.

I am now thinking it's just allergies, because I still don't have a fever or genuine cough. It is still just some mild sniffles, and Poly was right - Dr. said it's ok to go forward with tomorrow's poison, um, chemo.

He cautioned me that I'm not done yet (ie take my meds and make sure I don't lose too much weight in this round and more or less do what I have been doing and not get overconfident or careless...it reminded me of the Wallenda who fell off a tightrope in Puerto Rico and probably died thinking he had made it... sorry to be dark and all.. ) but in general he was very upbeat about "getting you out of here..."

I am a big fan of Dancing with the Stars, although I think Derek isn't really all that and Edyta should have multiple ugly mirror balls (UMB). But I digress. This season -- for me-- has been about watching the dancers get tapped off the floor one by one; they have been my mile markers. The fewer sequins shaking around, the closer I am to being finished. Tonight we are down to five couples. By the time this year's winner lifts up that UMB I hope to be feeling somewhat better from this final round. By the time LOST does their 80 hour finale, I hope to be feeling "good".

I am pulling myself through this, hand over hand on a really coarse rope, with the support of many many friends on Facebook, Twitter, here, etc.. (I got an email with awesome picture of the Diva, which diverted me from the road I was on (heading due South toward Being an Ugly Cranky Beast all day) yesterday... if you don't know who Grace is, check out "Have you met me" on my sidebar...)

I am honestly not sure I feel about the gong; I heard someone hit it today and the sound goes all through the entire set of offices. I do not want to collapse in a weepy puddle on the floor next to the gong. I am a "hold it all together" while the crisis is going on sort of girl and don't really know how I will handle being able to exhale and not have to worry anymore about the chemo killing me in mid-IV bag. So I don't know. We shall see.

In the meantime I need to leave now to go to the orthodontist and a baseball game and try to get HOME for DWTS. Later, kids!

Other plans

Arrgh. Lost my post trying to mail this from the Hipstamatic app.

Went to work, brought my lunch, had my Starbucks, had my act together.

There were almost no cars in the parkig lot. Also a few pockets of
people standing around but no one I knew and not enough for a fire
drill.

I walked in and a wave of heat hit me. It was 94 in the test lab.
Schneikies.

Talked to my boss for 5 minutes about what to work on from home this
afternoon while my wig melted and fused to my scalp. Egads happy to
leave.

On the way home I stopped to get some pots for a couple of seedling
and I got these for my deck. Just a couple of random things to mix
height and colors There's a Lilly in the back that i cut back so it
might bloom again this fall.

Now I am sitting on my porch enjoying a light rain and waiting for the
thunder to move in. ::::happy:::::

(Hipstamatic app for iPhone...it can even fake a flash on a cloudy
day... It was starting to rain when I took this photo.... )

Such a Monday

But who can complain when I have awesome friends stepping up to
support me all along the way?

Thanks Andy! :)

Jenaissance

Wander on over to my sidebar, dear readers (all 17.5 of you per day... wooot!) and visit my dear friend Jen's etsy store for lovely vintage inspired jewelry... I want one of each... Carly has no dollars...

Letting it all hang out

1. This week at work there was a new guy. He doesn't put his phone on mute and has loud conversations in the test lab. I want to vote him off the island but I am trying to be nice. He tried to be friendly to me and said "So you haven't been feeling well?" and I told him I had been diagnosed with cancer just before Christmas. He said, Do you mind me asking what kind, I was a premed student for a while. I said "No, not at all, breast cancer." He got beet red and apologized for asking. I was not offended at all... is it embarrassing to have a tumor in one place, rather than another? Silly really. More people need to talk about it so that more women get their mammograms sooner. If I waited until I was 50 that would not be a good thing, since I already had cancer cells in one lymph node.

2. Yesterday was the first time I went out in public in a bandanna. My friend calls them Doo rags and it cracks me up every time. When I went down to the park with APB he got a shot of me - I think it might be my next blog header. It's coincidentally cropped JUST RIGHT. :-)

3. At my son's baseball game yesterday a big burly guy who is a building contractor we have known for a few years (he almost did our addition) came over to see how I was doing, and then kinda half hugged me and wished me well.

4. Today at choir it was 1,000* in the loft. After the first song I was having a hot flash to boot, and I could feel the beads of sweat ROLLING out from under my wig. My son had come up to loft and said "Mom, just TAKE IT OFF" as though it were the most logical thing in the world... and of course it was... everyone says I have a pretty bald head which cracks me up to no end. One of the oldest guys came over and whispered in my ear that I look sexy, which almost put me on the ground laughing,... he is in his 80's. Take it easy there tiger.

5. A little india.arie for you, with a verse inspired by Ms. Etheridge herself and the last video I linked. Hopefully this one will actually embed... if not..

http://www.youtube.com/watch?v=E_5jIt0f5Z4



s





91 days till august first!

The Saddest Dog in Albany

I mean, look at him. Doesn't he LOOK miserable? It was about 84* by the way. We heard his owner say "I've had him since he was.... " something. I can just image how much the other dogs laugh at him behind his back.

Tulips

IMG_2972a
Originally uploaded by carlyq80

Woke up today and a local blog had pointed out yesterday that the tulips are all out, and the crowds won't REALLY come to this park until next weekend when Albany crowns its little old Tulip Queen.

Andy and I took a few hundred photos (he probably has 30 to my 95, who am I kidding, I click click click while he stops to take ONE good one) and then went for CHEEEEESCAKE! I miss cheesecake Tuesdays! I came home with six slices. I have to share, dammit.

We saw a crazy lady with a dog IN A DRESS AND BONNET. I will have to find and upload that one, I forgot.

Many more photos on my flickr feed... I tried to limit to the best 20 or so.

Melissa Etheridge

I should be sleeping, but I saw Melissa on dancing with the stars
tonight and loved her new song, and then I downloaded her album and
LOVE IT...(scream, multiple exclamation points)

So I was/am tired and I tapped the screen to try to copy/paste the
album art and finally found the hidden friggin controls to toggle
shuffle on and off; I'm stupid and have been sick and all and missed a
BASIC FUNCTION that I have been wondering why on earth was not
included...it has been driving me crazy to have iPhone SHUFFLE
EVERYTHING. Sorry about all of the capitals.

(I am rant-y today. Ask the person that I ranted to about the woman in
my church who "taught" my child that gay-ness can be *****cured*****
by ...wait for it... counseling; I UNTAUGHT THAT BULLSHIT REAL QUICK
when my kid came home to me, let me tell you... Well I did tell my
friend all about it. Didn't I? I will pray for churchlady that
someday she is able to LOVE PEOPLE JUST AS THEY ARE. Love one another
as I have loved you, I believe is the thing the dude says in the
book...)

At any rate then one thing lead to another this evening, and mock Wiki
all you want, but I was reminded of and then found this on
YouTube...and I needed it! You can skip Joss or not, but the second
half is Melissa right after HER treatment for breast cancer, I
remember seeing this back then, and I may just watch this every one of
the next 95 days and 40 minutes...

http://www.youtube.com/watch?v=R_j3TDhc8vY&feature=youtube_gdata

Ps: I'm assuming some of the meds are leaving my system, like the
lingering effect of the steroids, or maybe it's just that the new
medicine is working, because I definitely feel better, as you can
tell. We won't discuss the mini hotflashes.

95, people.

Hanging on

It seems when I start to think I have things under control, I trip over some side effect or problem I hadn't anticipated. (Like, well, my post surgical boob incision opening escapade. That was really just no fun.) 

I thought this round if chemo was going pretty well. No reaction, less steroids after, more prilosec and I was able to eat pretty well all weekend. Awesome. 

Yesterday I noticed that my tongue felt burned and swollen and I have been feeling slightly feverish here and there.

My boss, who has been supportive and wonderful because her child went through stage 3 cancer a few years ago, said "I think you might have thrush." I googled. Please don't google thrush because I do NOT look like what I saw.  Oh m gee. 

By the way, Boss' son is fine now.     

I called my friendly oncologist's office since I know they have a nurse line for dumb questions you don't want to bug the busy doctor with. 

They brought me in for what they call a nurse's visit. They are pretty familiar with the types of issues that can crop up and so I got the prescription I need. It's a lovely banana flavor cough medicine type concoction. I am supposed to swish it around and then swallow it. I am not quite sick enough to have lost my dirty mind, so....

Anyway. 

 

When I took a hike last year I loved the way this tree hangs on despite looking like it should fall over. I'm trying, kids.   

Taken by carlyq80 http://www.flickr.com/photos/93483329@N00/3742061561

100

One hundred days from today this part will all be behind me. But today
my stomach isn't working with me, and my bones ache. It's not helping
me be optimistic and cheerful.

I am taking a walk, and trying to propel myself through this part by
willpower. It's beautiful out and I wish I could enjoy it more. But
all I want is for someone to carry me home.

I'm tired of feeling disconnected from everyone I know; they are of
course going about their normal day to day routine. I feel like things
are moving forward without me while I am bogged down in this mess.

I am wildly uncomfortable with the idea of being a hero or an
inspiration today. People have said some very sweet things to me in
that vein (my son's friend talked to him about the idea that being a
survivor is something cool to be proud of, etc) but I just would
rather not have to be extra brave and tough and.... I want to be
ordinary. Normal.

One left, bitches

So I got extra premeds before my poison, um, chemo today.. And they
did the trick. I got a little bit queasy from either the actual chemo
or all the drugs but then the benadryl made me doze off for a while.
So, it was all relatively uneventful.

On Friday it will be 100 days to August first. I can do this.

The ABC's of billing

Ahhh, medical bills. So awesome and amazing.

Bills are fun to try to decipher.

Copays are the subject of this little post. When I started Chemo, ( a
"C" word in my least favorite list along with Cancer and The Original
Nasty C-word...) I was told that I would need to pay a Copayment every
time I walked into my oncologist's office. Even to get the shot of
Neulasta. So not only do I make no salary this week, I'm out $105.
Lovely.

During today's checkin I mentioned to the receptionist that my online
statements with my insurance company show that I appear to be only
paying one copayment per round of chemo rather than three. Billing
lady checked and said I will get a refund of my copayment for 3/10. I
said something that rounded up to "um, yeah, that's what I was trying
to explain." They didn't yet make the leap of logic that they should
not keep charging me the daily copayment. Arrgh.

Every medical bill is a little bit of a puzzle. What day was this for?
What the heck happened on that day? And it cost HOW MUCH? yikes.

Fun is not really the word I'd use to describe working out these
billing issues.

Generally we are ok but I will be happy to get some of these copays
refunded.

Hospital bills are still arriving... I found out that they switched to
a new billing system and THAT is why I got a bill for 1/19 surgery
last week. Last week, people.

I'm holding out hope I won't actually have to pay $1000 in copayments
while I get my course of radiation.

Just the fact that I can still get an "early payment discount" by
calling someone on the phone and saying "on this bill it says..."
still amazes me. I saved almost $150.00 today in three minutes.

K... Hmm. K is for Keep my weight where it is, doctor's orders. I've
lost about 11 lbs. Not that I am complaining, mind you. I'm also not
really drinking beer, wine, or soda.

I got nothin' for L. I guess I'll wrap this little game up

--Later...

Feeling better

This is the building where I work... It will give my former coworkers
plenty of Deja vu.

Monday I went to my local Gilda's House for a program called Look
Good, Feel Better.

It's taught by a salon owner, and participants get a bag full of
makeup, skincare products, and EYEBROWS. Can you tell why I went?

I quickly noticed it was something of Old Ladyville. But I think
people my age were AT WORK -where I probably should have been, if you
ask my checkbook.

But I consulted my rapidly vanishing eyebrows, and off I went.

I was ok except when we went around the table to introduce ourselves.
We had the option to share whatever we wanted about our diagnosis,
chemo, etc. I found my hands clenched tightly together under the
table and a huge knot in my stomach. Just to say that I had been
diagnosed right before Christmas, and was in the middle of chemo. It's
not something I usually have to SAY, given email/ texting/ etc.

I was feeling a smidge lucky by the time it was my turn, since
everyone else seemed to be having quite a bit more chemo than I'm
going to. :::knock on wood:::

I basically learned that my skin will be wildly unpredictable for the
next year or two, and if I do the wrong thing my face could just come
right off. Really. This woman sitting off to my left washed her face
and a whole layer of skin came off. Say it with me: gaaaaaag.

So we practiced all sorts of makeup tricks to help us feel better
about the face looking back at us from a mirror, which is something
that has been bugging me... I don't look like ME anymore; the wig is
pretty and fools people until I wiggle it because it's too tight. But
it's not MY hair and I don't look like "me", especially bald.

(I have been coping with that by taking frequent self portraits with
my phone and posting them to Facebook and/or sending them to a friend
and saying in not so many words "I still look ok right ?". So thank
you to anyone who's seen some or all of them and kindly restrained
from saying "enough with the pictures already!" You know who you are.

I did like some of the tricks our group leader showed us with
eyeshadow, and especially how to dot on eyebrows (!) and blend them
with a clean mascara brush so they're not so obviously fake. (!!!!)

This week at work I am proofing some material about gardens and
greenhouses and it's SO NICE not to be reading medical/ EMT/ nursing
stuff. It seems karma has a little fun with me; we have a number of
those texts roll through our department.

Next week, of course, I get another hand grenade lobbed into my
system, so I'm going to suck it up and watch the first season of Mad
Men, all of the seasons of the Office, and whatever the heck else I
can watch with only one eye open. Then it will be three done, one to
go. Bitches. ;-)

Good day

Since I piss and moan about the bad days (kidding... Sort of...)

Today was a Very Good day. This week at work was difficult because the
mind wanted to go and earn money and the machinery said "ummmmmm......"

Friday a very kind project manager I have been getting to know took me
aside and listened while I cried about 3 different things in her
office. Then she told me there are several women in the building who
have had bc and they have a support group. So I will be meeting one
next week. I was exhausted from only getting about five hours sleep
Thursday night after a couple of really frustrating conversations
about, well, basically money things. Yuk.

Yesterday the magic switch in my stomach clicked and I am able to eat
again. It happens a day or two after a Very Bad Day with my stomach...
Something to look forward to two more times...

Today I went to a mall and bought shoes and a purse like God intended
for women to do on a Saturday. :::dodges lightning::: I also bought
candles and a couple of things in Sephora. Like eyebrows, but we won't
go there. And lipstick.

I took myself to lunch and started on an interesting book I saw in
barnes n noble (gotta love the kindle app for iPhones!)

Came home and planted some seeds for blue spruce trees and basil that
I got from various school fundraisers. Mmmm, basil. I am dreaming of a
summer salad of torn crusty bread, fresh tomatoes, mozzarella and
basil, with red onion and olive oil. Mmmmmmm.

Now I am sitting at my art table while I bake a pan of lasagna someone
made for us. So very sweet.

The painting at the top is a self portrait (tee hee) and the bottom is
someone else's artwork I bought once upon a time as a scrapbook
embellishment. It says Life Is Good.