LilyFestre-Mommy+Daddy+Baby...now on to Life!

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: Stilly River Sage
Date: 13 Feb 10 - 10:52 AM

I agree with Bobert--talk to the hospital and see what kind of deal you can cut. The trouble with all of this insurance/no insurance health care is that no one really knows how much anything costs. The hospital gouges the insurance companies hoping to cover the uninsured they have on their books, and your 20% is of a gouged price, or that's my guess. The amount the insurance company actually pays the hospital is much lower than the hospital asked for, so you need to figure out what numbers are really in play and go from there.

Good luck. Getting well in this day and age means not only surviving the medical treatment but also walking the minefield of hospital billing departments. And bills seem to trickle in from all sorts of directions.

SRS

Subject: RE: BS: LilyFestre -UPDATE - she's home, resting:-)
From: katlaughing
Date: 13 Feb 10 - 12:58 PM

We applied to both hospitals here with what is considered a fairly decent income and we get a 35% discount. Well worth talking to the financial dept.

Good to hear you are doing so well!

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: wysiwyg
Date: 13 Feb 10 - 04:19 PM

I like the new thread title. Already Traced so easy to Find.

~S~

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: TheSilentOne
Date: 13 Feb 10 - 05:12 PM

just loving the constantly morphing title of this thread...

very good, very positive.

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: AllisonA(Animaterra)
Date: 13 Feb 10 - 08:12 PM

Lily, you sound positively euphoric! What a welcome sound! Keep it up, sweetie!

(my beloved baldy swears by conditioner...)

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: VirginiaTam
Date: 14 Feb 10 - 06:55 AM

oops! TheSilentOne post was from me... I was on desktop pc and Mudcat was his log in..

Doh!

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: wysiwyg
Date: 14 Feb 10 - 08:38 AM

VT, I WAS wondering how he could be TSO if he warn't being S.

:~)

~S~

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: LilyFestre
Date: 14 Feb 10 - 08:56 AM

Having myself a mango smoothie for breakfast with the whey powder. It's not bad, not bad at all. :) Next time though, I need more mango!

As it turns out, we are supposed to get quite a bit of snow on Monday night. My first chemo appointment is early on Tuesday morning and the place is about 2 hours away. So...they have this place near the treatment center called The Care House. It's like the Ronald McDonald House but for adults who are undergoing cancer treatment. I called this morning to make reservations for Monday and Tuesday (as I'd like to be nearby for the first treatment in case I have any adverse reactions). First the hospital has to call The Care House to confirm that I am a patient. So now, I'm just waiting to hear if they have room. Bonus? It's only $15.00 a night. We have to make our own beds and change the linens when we leave. Big deal. There are no TVs in the rooms but there is a community room with a television if we want to watch tv. If not, we can read, or cook in the community kitchen. Anyway, I'm hoping it goes through so we don't have to drive these mountains in a snow storm.

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: wysiwyg
Date: 14 Feb 10 - 09:14 AM

LF,

When the CS and I plan these longer trips, we find Weather Underground (wunderground) invaluable. It has settings on the page where you can save your fav. cities to quickly see what weather they are having.

Thanks for showing me Jacqui's knitted caps last night. For a long time our dear Maeve was my best "window in" on the Mainers; the color variety/color/care taken/textures of the caps-- and especially the hatbox Jacqui had sent them all in-- was just as powerful. I knew that lady was special, of course-- but the abstract idea is seldom as powerful as the show and tell. So I thank you for sharing not only the gift from YOUR view, but for enlarging mine in a way that may benefit others as well (tho I am sure you didn't know that).

About the distances hereabouts, and the conversation last night about hats and books that "call" to me sometimes-- We sometimes pick up faraway items for others, and how we reduce the "clutter" about that is to call folks up while looking at items, to see if they are wanted. Is that something that would work for you? I think Hardi has your cell (maybe under Bonnie's name, LOL) on HIS cell and he usually carries it even on his day off (and I sometimes use it to field church stuff ON his day off sometimes so he GETS a real day off.)

About the word picture-- the photog. I'm looking fwd to you modeling your new look. ROLE modeling is what I was trying to suggest, because I think you will be equally gorgeous and graceful. People will see you and think, "Oh, that looks like a yoga person." (I know I will.)

Re: svc recordings. I found a spare cord finally, and that means I can slice up one we have that doesn't poke deep enough into the slot. If we can modify it-- and BTW I have a drawerful that need the mod-- I'll have a cord for you. In the meantime pls do not waste your $$ on one, because chances are it will not fit.

Go get 'em girl. And..... ya might wanna BOLO for the people that will be looking to you as their leader/mentor/comforter/ROLE MODEL..... :~) That teaching cert may kick in at any moment. :~)

~Susan

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: LilyFestre
Date: 14 Feb 10 - 09:47 AM

Ok. I HAVE to ask. What is BOLO? Buy one lend one? LOL My grocery list often reads, BIG1F (buy 1 Get 1 Free).

Anyway, I can't make sense of it, help please!!!!

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: wysiwyg
Date: 14 Feb 10 - 11:51 AM

Cop talk-- they issue BOLO's.

Be
On the
Look
Out

BOLO

OTOH a "bolo" is a South American throwing thing to catch cattle.

~S~

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: Rowan
Date: 14 Feb 10 - 03:31 PM

OTOH a "bolo" is a South American throwing thing to catch cattle.
with strings attached.

Cheers, Rowan

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: wysiwyg
Date: 14 Feb 10 - 07:31 PM

Rowan, isn't the bolo the whole shebang, strings and balls and all?

(yikes, imagery)

~S~

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: AllisonA(Animaterra)
Date: 14 Feb 10 - 08:19 PM

It's also a kind of neckwear...

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: LilyFestre
Date: 15 Feb 10 - 06:45 AM

I'm up early this morning, packing for a 2 night stay at the House of Care. Tomorrow morning I will have my first chemo treatment via IV.

I'm nervous about it. Scared really.

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: jacqui.c
Date: 15 Feb 10 - 07:39 AM

I will be here and thinking of you tomorrow Michelle.

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: AllisonA(Animaterra)
Date: 15 Feb 10 - 07:44 AM

Holding your hand and breathing with you, my dear....

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: Sandra in Sydney
Date: 15 Feb 10 - 08:29 AM

sending more love & good wishes

sandra

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: wysiwyg
Date: 15 Feb 10 - 10:08 AM

If you can narrow the fear into a more specific thing, it's easier to know how to meet it.

One way is to name it and then laugh scornfully at the fear.

"I'm scared that xxxxxx. Ha Hah! HAH!, fear, I'm bigger'n you!"

Maxine: Wake every morning as if Satan says, when he hears your feet hit the floor, "Oh NO! She's AWAKE!"

I'll try to remember to print the cartoon where she sez that, for ya.

~Susan

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: SINSULL
Date: 15 Feb 10 - 10:16 AM

Tuesday will be a busy day in Mudcatville with Kendall in Boston and Lily at chemo.   I believe I will take a nun or two to work to keep me focussed on what's important.
Good luck to both of you.
Much love,
Mary

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: LilyFestre
Date: 15 Feb 10 - 10:44 AM

More directly, I am afraid that they will have trouble getting the IV in. I am afraid it will burn. I am afraid that I will be sick to my stomach for the next 6 months. I am afraid that it won't work. I'm afraid I'll cry and never stop just looking around the treatment room.

And that's just for this trip. Forget about the port procedure coming up soon.

Leaving soon.

Thank you and much love to all,

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: wysiwyg
Date: 15 Feb 10 - 12:08 PM

Michelle,

Thank you for:

More directly, I am afraid that they will have trouble getting the IV in. I am afraid it will burn. I am afraid that I will be sick to my stomach for the next 6 months. I am afraid that it won't work. I'm afraid I'll cry and never stop just looking around the treatment room.

This is a good spot to share, now, with Hardi as well.

In the vein of my earlier post, I would say this: by the time you read this you will probably have experienced many of the following:

"I was afraid that they would have trouble getting the IV in, and the did, but I handled that well. I was afraid it would burn. It did but discovered that I could handle that quite well. I was afraid that I would be sick to my stomach for the next 6 months, but I realized that all I have to deal with is Today, and today I felt great and [insert the day's blessings]. I was afraid that it wouldn't work but then I realized how blessed I am and how much worse other folks have it. I'm was afraid I'd cry and never stop just looking around the treatment room, and then I remembered all the times Susan and other people have affirmed and welcomed my healing tears, which God sends me when I really need them, though the Holy Spirit which is also called the Comforter."

This is how I pray for you. I'm quite confident that any piece of it that is what you need to hear next, you will hear, and that you will shrug off the rest for a time it may or may not come back to you.

====

What does "lilyfestre" mean, BTW, and what does "Petal" mean?

~Susan

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: VirginiaTam
Date: 15 Feb 10 - 12:23 PM

Oh no.. I am late in posting.

Well here waiting for your return and hoping all goes easy peasy for you.

Susan - Petal = part of a flower = different kind of term of endearment, like honey, baby, sweetie, sugah, angel.

Yes I wondered about Lilyfestre too

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: LilyFestre
Date: 15 Feb 10 - 09:34 PM

Tonight I am at the House of Care which is mostly for cancer patients. There are no tv's in the rooms to encourage people to get OUT of their rooms and hang out in community areas like the kitchen, living room/library or one of the tv rooms.

There are some people here who have lost their hair and it bothers me to see them because I know that very soon, I am going to be one of them.

Lots of different people with various diagnosis and stories. Mom and I hung out in the kitchen area where there are several cafe style tables. We played some games, I learned a new one with Dominoes called Turkey Toes....fun! I also read in the living room for a bit and have now retired to our room.

By this time tomorrow, I will either be home or if it is still snowing, I'll be here....first treatment over with.

I am not looking forward to it.

In order to help assist with the IV issues, I've been drinking water like crazy....being dehydrated makes it all the harder to get an IV in.

And btw, I like Petal!!!!   :) Made me smile!

I'll explain LilyFestre another time. For now, I'm tucking into bed and going to try and focus enough to read.

I'm keeping a few things my priest told me in mind.....in particular, "Damn it, I WILL get through this!"

Love and hugs.

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: Sandra in Sydney
Date: 16 Feb 10 - 12:27 AM

Susan & Tam - my sister (2 years younger) sometimes calls me Petal & I'd always assumed it was related to Pet - term used by older person to youngster! Our Nan used to call us Pet at times.

sandra

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: LilyFestre
Date: 16 Feb 10 - 08:24 AM

I'm off to my first chemo appointment...slept maybe 2 hours last night. ARG.

It's going to be ok.
It's going to be ok.
It's going to be ok.

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: Revelations
Date: 16 Feb 10 - 08:30 AM

Between you and Kendall I slept about wo hours last night too. Mardi Gras, Lily. Fat Tuesday. Celebrate the first step towards total good health and a life.


Yeah - it sucks but that is the best I could come up with.
Love,
SINS

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: SINSULL
Date: 16 Feb 10 - 09:22 AM

No I didn't change my name. Someone has been playing on my computer at work. I am back to SINS.

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: LilyFestre
Date: 16 Feb 10 - 10:38 AM

It's Mardi Gras and I'm celebrating with a giant ass cocktail of taxol and carboplatin.....too bad it won't have the same effect as a Tom Collins!!!

   I'm in the chemo chair at the moment, lots of anti-nausea pills and steroids have been given. IV in at the first try and right now it's just running saline, taxol to begin in about 15 minutes or so. My nurse is really nice and has answered my bazillion questions.


More later.

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: maeve
Date: 16 Feb 10 - 10:50 AM

Thanks for checking in, Michelle. You are doing well!

maeve

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: wysiwyg
Date: 16 Feb 10 - 11:58 AM

Alert: Heart-thawing song link inserted into the following informational post.

~S~

===


New Randy Owen single to benefit St. Jude

"Braid My Hair," the new country single from Randy Owen, will not only serve to launch the country music legend's solo career, but will help children in the fight against childhood cancer.

That's because 100 percent of the song's publishing royalties are being donated to St. Jude Children's Research Hospital by Owen and songwriters Chris Gray and Brent Wilson. The single will hit radio stations in late January.

VIDEO SONG - BRAID MY HAIR

In addition, you can support St. Jude by purchasing a digital download of Owen's new single. Using the media player below, you can hear the single (http://www.weblastonline.com/store/product_info.php?cPath=2&products_id=42&ref=15) and then purchase a copy for $1.99. Fifty-cents of the purchase price will go to St. Jude. In addition, you will receive a free "Braid My Hair" ringtone and $1.00 off of the purchase of Randy's upcoming album release "One On One."

The song is the first single for Gray and Wilson and reflects Gray's experience as a teacher in a children's hospital, helping kids keep up with schoolwork while they underwent treatment for cancer and other conditions. Gray often witnessed the side effects of chemotherapy and knew kids – especially girls – wanted to be able to braid their hair again.

"The song is so real," Owen said, "and I've seen this lived out time and time again with the kids at St. Jude. It's an incredible story done in song."

The song will be featured on Owen's debut solo album, titled One on One, and will hit stores this spring on the newly-formed DMP Records. Owen and his 10-piece band will hit the road later this month for a tour that will extend into the fall.

Owen has long been a supporter of St. Jude, helping to found the Country Cares for St. Jude Kids radiothon program which to date has raised more than $315 million for St. Jude. In 2007, the Thomas family honored Owen with its prestigious Founder's Award.

January 2008
http://www.countrycares.org/content/latest_stories.cfm?content_id=195

===

Saw and recorded the song on CMT Studio 330 Sessions
(Looking for lyrics but so far no luck)

SH

Subject: Lyr Add: BRAID MY HAIR (Gray/Wilson)
From: wysiwyg
Date: 16 Feb 10 - 12:12 PM

Song linked in post just prev (includes background info) references Locks of Love.

Found the lyric.

~S~

===

BRAID MY HAIR
Written by by Gray/Wilson
As sung by Randy Owen on "One on One" (2008)


1. She could be the first female president
Or be the doctor whose experiment
Finds the cure to what she's in here for;
But right now treatments keep her sick in bed.
That baseball cap never leaves her head
And while she sleeps I sit and dream...
One day I asked her, "What do you wanna do when you grow up?"
I soon found out I wasn't dreaming big enough.

CHORUS: She said, "I'm gonna ride my bike, I'm gonna climb a tree
Gonna fly a kite, score a run in Little League
I'm gonna go to school, make a friend, be able to run again
Take off my mask and just breathe in the air--
But most of all I'm gonna braid my hair."

2. She could question God; Lord, knows I would!
She could just give up; I don't think I could
Be that strong or fight so long.
How can such a little girl have such big faith?
And even through the pain she still prays, saying,
"God will make a way...

CHORUS REPRISE: "For me to ride my bike, for me to climb a tree
I'm gonna fly a kite, and score a run in Little League
I'm gonna go to school, make a friend, be able to run again
And take off my mask and just breathe in the air.
But most of all I'm gonna braid my hair that's down to my waist
Then I'll get it cut so they can make
Locks of love for some little girl who's just like me."

Wonders if she'll ever be
Able to ride her bike, able to climb a tree
Able to fly her kite, and score running little league
Able to go to school, make new friends, be able to run again
Take off her mask and just breathe in the air
And most of all she can braid her hair
She can braid her hair


Source (correx made fr transcription): Braid My Hair lyrics at http://lyrics.cmlyrics.com/

SH

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: wysiwyg
Date: 16 Feb 10 - 12:19 PM

Songs for Battling Cancer

~S~

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: LilyFestre
Date: 16 Feb 10 - 12:22 PM

I'm now into my 3rd hour of chemo. I did not have any reaction to the Taxol so that's good. There is a woman sitting across from me who had her surgery with the same surgeon I did and she is on the same chemo schedule as me. We've been chatting up a storm and have already exchanged addresses and emails.
    They also gave me Benedryl at the beginning of the treatment and I'm not getting sleepy. Of course, the meds they gave me ups my blood sugar and right now it's at 415 so that will make me tired too. They gave me 8 units of insulin but I know my body and know that only 8 units isn't going to do squat. They'll have to give me more before I go.

    So far, the weather is looking ok so maybe I can get home tonight. That would be good.

NIght all, I'm off to dreamland.

Much love,

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: wysiwyg
Date: 16 Feb 10 - 01:48 PM

I bet your haircut looks like Petals.

:~)

~S~

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: LilyFestre
Date: 16 Feb 10 - 02:11 PM

I bet my haircut will look like balding dandelions. :P

Michelle

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: VirginiaTam
Date: 16 Feb 10 - 02:12 PM

Wow... What a charge I get when I read the most recent posts.

Michelle... I am still in awe of and inspired by your high flying spirit.

That Braid My Hair song is a tear jerker. In a bittersweet way.

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: VirginiaTam
Date: 16 Feb 10 - 02:32 PM

Ahhh dandelion seed heads reminded me of a poem I wrote years ago.

SOWING WISHES

Some fairy
has lost her hair

Catch it quick
and you get your wish

But do not look
when you let it go
or the wish won't come true

The closing of eyes
The opening of hands
The curious commingling
Reluctance
Desire

And the last peek

Didn't we know that
holding a gossamer seed

Hope

in our hands
is better than any wish
come true

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: gnu
Date: 16 Feb 10 - 02:44 PM

T&Ps.

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: wysiwyg
Date: 16 Feb 10 - 03:53 PM

Ah, so Petals DO come in all shapes, sizes, and powers. :~)

I suspected as much earlier and Tam confirms it! :~P

Seriously, all those tears-- they are paying off now.

~S~

Subject: RE: BS: LilyFestre -UPDATE - she's back in motion!
From: Sandra in Sydney
Date: 16 Feb 10 - 05:33 PM

tears in my eyes, too

thanks Michelle for sharing what's happening.

sandra

Subject: RE: LilyFestreUPDATE*CA*Seeking Chemo Starts Slaying!
From: SINSULL
Date: 16 Feb 10 - 06:49 PM

Our snowstorm appears to be a wash out. Maybe yours will be too. Thanks for including us un your story, Michelle. Sweet dreams.
SINS

Subject: RE: LilyFestreUPDATE*CA*Seeking Chemo Starts Slaying!
From: LilyFestre
Date: 16 Feb 10 - 07:16 PM

And I'm home! YAY!!! So far, no side effects at all, they said that Day 3 is usually rough and then days 7 - 10. I feel pretty good....tired but good.

They got the IV in on the first try.
There was no burning sensation throughout the 6 hour infusion.
I do not feel sick.
I did not cry at all (except this morning when I met a woman in the hall who had a horrific story to tell of her cancer....I went back to my room and just cried out of heartbreak).

Mom told me she was proud of me! :)

I'm looking forward to sleeping in my own bed.

Tomorrow my hair comes off. All of it.

I am ready.

Sweet Dreams My Friends!

Love,

Michelle

Subject: RE: LilyFestreUPDATE*CA*Seeking Chemo Starts Slaying!
From: Stilly River Sage
Date: 16 Feb 10 - 07:31 PM

Just reading along. Fingers crossed, and amazed at the changes in chemo from when my mother went through it. The idea that you can chat from the computer while you're in there makes it all a lot easier emotionally, I feel certain, along with being able to find information when you need it.

Keep up the good reactions to all of this!

SRS

Subject: RE: LilyFestreUPDATE*CA*Seeking Chemo Starts Slaying!
From: Bobert
Date: 16 Feb 10 - 07:37 PM

Taxol, if my recollector is recollectin', is from some tree in Mexico... That's kinda what I remember... Seems natural to me...

Ahhhhh, the hair doesn't come out like that... It's alot slower... Heck, like I've said, "Bald womenz is sexy" so I'd just shave the stuff off and beat the side effects at their own little games...

What other drugs are they gonna use, Michelle...

They used to use C.A.T. The "T" was Taxol... I can't remember the other two's names...

What, no port??? Hey, don't make me come up there and install one myself... Jus' funnin'... I'm outta the port business...

B~

Subject: RE: LilyFestreUPDATE*CA*Seeking Chemo Starts Slaying!
From: Bobert
Date: 16 Feb 10 - 08:00 PM

Opps!!!

Ignore this slow readin' hillbilly, Michelle...

That's a 10-4 on the hair and the port... Ol' hillbilly now up to speed... You just take it easy...

B~

Subject: RE: LilyFestreUPDATE*CA*Seeking Chemo Starts Slaying!
From: Bill D
Date: 16 Feb 10 - 08:25 PM

Taxol is from Taxus brevifolia, the large Yew tree that grows in Washington & Oregon.

It really helps! Hope the Yew helps YOU!

Subject: RE: LilyFestreUPDATE*CA*Seeking Chemo Starts Slaying!
From: catspaw49
Date: 16 Feb 10 - 08:29 PM

Wow Michelle..........Ol' Spaw be really impressed. You're becoming an ass kicker ain't ya'?   Far out!

Spaw

Subject: RE: LilyFestreUPDATE*CA*Seeking Chemo Starts Slaying!
From: gnu
Date: 16 Feb 10 - 08:29 PM

Bobert... bald women are not necessarily sexy.

Sexy women are sexy.

Women with spirit, as we have just witnessed, are sexy, cool, and a joy to know.

Subject: RE: LilyFestreUPDATE*CA*Seeking Chemo Starts Slaying!
From: Bill D
Date: 16 Feb 10 - 08:34 PM

and I KNEW I had read that they were now getting the drug from other sources! Paclitaxel

(harvesting Yew bark was endangering the population of the trees....now they are culturing the drug(s) from various sources and getting close to synthetic versions)