Tuesday, April 27, 2010

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.   






Friday, April 23, 2010

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.

Tuesday, April 20, 2010

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.

Monday, April 19, 2010

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...

Wednesday, April 14, 2010

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. ;-)

Saturday, April 10, 2010

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.

Thursday, April 08, 2010

Dear Panera

Please keep making that chicken noodle soup. For some bizzarre reason
it sit well with me.

But when I'm better? You need to work on that soup. Seriously, the
noodles are mush and I think I had two actual bites of chicken and
maybe one carrot.

I know this doesn't make a lot of sense. I am a Top Chef fan though,
and that Saveur guy I don't like would really tear this apart.

Smooches,
Carly

Wednesday, April 07, 2010

The easy way out

I keep thinking that if I am "good" I can somehow dodge the side
effects of chemo. If I eat right and only eat certain foods my
stomach will be swell and .... Yeah, it's not working. I am not in
control, it's not that easy.

Today was not a great day; I ate a couple of things that may or may
not have contributed to my downfall; who's to know? When I saw the
writing on the wall I drove home mid-day (crying in frustration). I
felt pretty lousy. UNDERSTATEMENT!!

I took some medicines, retired to my dear pillow, waited to feel
better, and had plenty of time to mull over something that crops up
now and then: "I'd chop them off".

Some women, when the topic comes up, loudly declare "if I ever get
breast cancer I'll just cut them off..."

It's not that simple.

Everyone seems to think that you just snip them off, lie around on the
couch for the weekend, and you're done. Well, let me tell you. Major
surgery and you come home with implanted surgical tubing that drains
into containers (which you have to carry around more or less, and
empty...)

People seem to think it's a Get Out of Cancer Free card, and you just
won't have to worry about that pesky c-word. Not so. There is
approximately a 5% recurrence rate, if I remember what my surgeon said.

Depending on what type of cancer and how far along it is, you could
also end up still needing chemo anyway like my friend Ethel. And
that's after reconstructive procedures. Plural. The empty implants get
put in place, then gradually filled.

In the meantime? The scars? You don't even want to google the pictures
if it's your own face you're mentally adding in.

Ethel even got a bonus round - she was in the early cycles of her
chemo treatment and her implants got infected. They had to be removed.
She's going to have to start over if she wants ta-ta's. Did I mention
nips? Those can be tatooed on later. Yes, really.

So, some would say that it was ME who took the easy way out. Four
incisions, one opening, repairing that and redoing margins.. Piece of
cake.

Now if only I could have a damn piece of cake.

Sunday, April 04, 2010

Sunday art part 2

I spend time when I have insomnia trying different photo apps, and
editor photos I've already taken....

Sunday art

Took a few tries to get a photo I liked today... considering I'm just
using my phone... I am happy with this one.

Dear blogger

Why don't you have an iPhone app?

I was in mid thought on my previous post and bumped "send" up in the
top of the screen. Annoying. I can't fix the post in my phone's
browser for some reason.

Hmm, is this going to be one of those days?

I was going to talk about my solo, last night at church, so I guess I
will still do that ... It starts off "God indeed is my saviour, I am
confident and unafraid" and I only wish that were true. The parts
about me, that is.

I wanted it to be a little battle won, and it was. I hoped all day I'd
have the energy to dress up, and make it up that winding staircase. I
got there.

I asked my friend Scott to watch over me lest I pass out and make a
silly fool of myself. Stanley transposed my notes down two full steps,
so I think it sounded nice. I didn't see many familiar faces down
below but the vigil mass is long and late...

So it was not a movie scene sort of triumph where everyone wipes away
tears about how cancer girl sings like an angel and she's plucky and
brave and yada yada. But it was a bit of normal during a time when
everything is depressingly NOT normal and so I am content with that.

It helps when my friends cheer me on with Facebook comments or notes.
But I'm not brave. I'm cornered, I'm resigned, I'm frustrated and
discouraged. I would really like to just go sit at the beach
somewhere, have a few daquiris, and hide from all this shit.

I am trying to pull myself through this emotional valley, knowing that
I'm not sleeping and I will feel better next week. But I resent the
thought that if I were in my old job I could be on paid disability and
just resting, not trying to pull myself together to earn some money.

Right now I'm counting things I can't do and not really seeing plans/
events to look forward to. Can't go for a run or even a walk on a nice
day. No energy to do that or take my daughter out for some badly
needed new spring clothes. Very frustrating.

So I want this post to be upbeat and serene and happy, but I would be
faking it. I guess for now, this is where I am and I must learn a
patience I don't have.

There is an unresolved melody here somehow, because I'm trying to end
with '...but I'm fine'. The hardest thing about this is NOT being fine
and being okay with not being fine for a while.

Happy Easter

Well I made it to church last night.

I was miserable and cranky and tired all day because my legs ache

I spent a large portion of the day alone because Mr and the kids go
over to help decorate the altar with dozens of lillies and other
Easter flowers.

I wanted to do some billable work from home and I just couldn't get
it going.

Friday, April 02, 2010

Good Friday


I'm writing this on Sunday... this is a scan of one of my favorite songs to sing during Lent, because I think it's beautiful. The harmony is right in the middle of my range, and I think the words are just the perfect balance of reverence and imagery.
Here's hoping that Friday comes soon and I am doing better THIS Friday than I was the Friday of chemo week last time (it was the start of a few small mistakes which added up to making me feel pretty wretched by the end of the weekend. Hopefully I will manage the side effects a little bit better this time!) I am really hoping to go to church Saturday night and Sunday morning. We shall see.
I am reminded every Good Friday of a youth conference I attended in Niagara Falls (back when I was a Lutheran...and about 16 years old, getting one of my first kisses on a bench in a park overlooking Niagara Falls... set the bar pretty high there huh?) There was a preacher who spoke to us and the theme was "It's Friday... Sunday's coming." He put us into the mindset of the apostles... It's Friday now and things are dark, you are discouraged and everything seems bleak and hopeless. But Sunday is coming. Sunday all will be made new, and right. He reiterated this idea a number of ways and got a bunch of high school kids VERY much into hanging on his every word. He grew progressively more enthusiastic and he knew he had us. At the end of his sermon he screamed "IT'S FRIDAY!" and we all screamed back "SUNDAY'S COMING!!!" and that is how I feel right now.

Thursday, April 01, 2010

Splitting hairs

Sometimes I forget. I get in the shower, and lean back, and reach up to brush my hair back into the waterstream... only it isn't there anymore. It's just a habit, I always wash my hair first. But it's an "oh..." moment. It's gone.


When it starts to grow back, I'm pretty sure it will be grey, and I can't color it for a while or it will just break off again. I might not ever go back to the haircolor I used to have, which required maintenance, coloring the roots every five weeks; I just don't know. It's expensive, and time consuming, and... whatever. So I might get used to it looking differently and by then I will physically feel better and be happy to have all this behind me so maybe I will feel better about it all. But right now, I miss my hair.

I am more comfortable without the wig. So around the house I don't wear it. I have various scarves and hats that go on and off all day long. But often I am alone, this week at least, and I don't have anything on my head at all because that's just most comfortable. And yet when I see "bald me" in the mirror, it's still new, and unfamiliar, and very disheartening. I don't look like me anymore.

I just looked at myself in the mirror, with no makeup and no hair, and thought, you look just like the guy's face on the magna doodle. I used to have one as a kid. I remember the egghead shape, and that you could use the magnetic bits to make hair or a mustache or beard... obviously this is not a trail I want to linger on. The steroids make my face puff up a little bit, so that isn't helping.

All this over a little tiny blob of tissue that grew inside me. It's so frustrating, to have to go through such great lengths to keep it from growing back. I had the option to not have chemo, and wait for further testing on one tumor (I had two different types of cancer, one for each side; invasive lobular and invasive ductile), but I did have a smattering of cells in one lymph node that was removed during my original surgery, and so I decided to move forward and get it over with and try to put this all behind me. Easier said than done.

Hopefully this funk will pass as I get to feeling better; I'm exhausted and feel like I didn't do anything at all today, because "resting" and "recovering" don't do laundry and cooking and dishes and billable hours.


Mia porcha

This morning I had zero energy. The not sleeping for two nights has
done me in, plus I only take steroids mon tue wed of a chemo cycle. So
now I don't even have those to boost me a little

I tried to get up and sit at the desk and finally gave up and went
back to bed. It's frustrating for me because my son is off from
school today and I wanted to be more awake and peppy to be with him.
He spent the morning watching tv. I hated to nag but finally made him
clean up some dishes and stuff. Just couldn't do it myself.

I dragged myself out to my porch. When Suzy was here it was nice
briefly so I have a lounge chair out here, but no tv or anything. It's
ok. At least I can lie here with the sun on my face. (and the rest of
me covered in two fuzzy blankets!)