Thursday, June 12, 2008

Costumes, Murder, Shouting Above the Din, and more --aka, Rehearsal

Last night's rehearsal was organized chaos--at least that's how I like to think of it.

We were in the choir room at HDHS, which is totally decked out in Wizard of Oz gear (which I love!). Sally, our accompanist, lead us through "Facade" once, until Ken arrived to take us through our paces. That number is really coming along and the soloists are coming into their voices. Ken doesn't have to stop and tell us to project (well, as much!).

During the rehearsal one of the costume ladies began taking our measurements. Mindy and I went to be measured together, and it was rather involved. Height, shoe size, waist, bust, hips, arm span, arms bent, arms straight, back, neck to hips, etc. were all taken and measured. My friend Jaylene is working on the costumes and has just begun sewing them. I don't even want to think about how many we'll each have. I would imagine I'll have three, minimum--one for "Facade" and "Murder, Murder!", one for "Bring on the Men" and "Girls of the Night" and then one for the engagement party/wedding. Whew. And we'll need shoes for those...and jewelry, probably. I do not envy our costume and prop folks!

We ran "Murder, Murder!" and assigned solo/small group parts. I ended up being in a few of the small groups, which makes me happy. This is a very tricky number so I didn't think I'd be asked to sing anything out of the ordinary. I am now working like mad to get the words memorized! We were being rather loud during the assignment of parts, so Ken had to doing a lot of yelling to get it all straight. I'm still not sure if we have it all, but if not we'll sort it out on Sat. morning.

We also worked on "Facade (reprise 1)" which takes place before the Engagement Party, and "Confrontation." This is when the actor playing Jekyll/Hyde has to sing bothJekyll and Hyde simultaneously, back and forth. It's really awesome. The chorus sings (off stage, I think) on vowels to add to the eerie effect. It will sound really great when it's all together.

The only pieces left then are "Girls of the Night" and "Facade (reprise 2)", which takes place right after Confrontation and before Letting Go/the Wedding.

It is less thana month until opening night. Yikes! One month from now we will be onstage for our second show!
If you want tickets, or more info, go here. Note that it is labeled "PG-13", and it should be. This isn't Annie. Not only are the themes a bit deep, but eight people die during the course of the show, and we use guns (well, prop guns, but still. They're loud.). So be warned--I don't want anyone traumatized here. :)

The excitement builds. :) Next rehearsal: Saturday at 9 a.m.

Part III: Courtship

Wednesday, June 11, 2008

Tuesday, June 10, 2008

Monday, June 09, 2008

Vertical kick lines

When I first saw Jekyll and Hyde at age 14, I didn't really think I'd ever been in it.
Much less laying on my back and kicking my legs up at a 90 degree angle.

On stage.

In fishnets.

Yet, that is what I'm doing.

Not that I'm opposed to this.

Tonight was our first dance rehearsal. J&H, like a lot of 90s musicals, doesn't have a lot of dancing, so there's only one number to choreograph-- "Bring on the Men", Jekyll and Utterson's introduction to Lucy and the Red Rat underworld of which Hyde will become a part.

The beginning is fairly simple. There are, however, two pieces that are rather...interesting. I am sure they will look arresting, interesting and provocative from the audience.

The first is to the second chorus of the song, and the first time the Girls sing. My section is to lay down on the stage, with our legs at a 45 degree angle, and proceed to kick them up, one-two, one-two, like Rockettes, except on our backs. (THANK GOD for my ballet classes, is all I can say). We then roll onto our stomachs and do the kicks again, then roll right and up into a standing position. From here, we go into the dance break.

The hardest part for me involves the turns. We haven't done pirouettes in ballet class so my spot was all over the place. I wasn't the only one, but it was really driving me crazy. We do two turns, step out, do a series of steps and then a kick on the right. Like I said, I'm sure it will LOOK good. But right now, it's a bit discombobulated, which is to be expected following the first rehearsal.

We won't have a set until the end of June, when building begins, so, while we know there will be tables, chairs, and a bar as part of this set, we have no idea where they'll be. I am sure the men onstage with us will enjoy this. I just hope I don't kick one in the face, or something.

Chorus rehearsal on W.

Sunday, June 08, 2008

Music Time 2

Since I've talked about the opener of the show a lot, you might want to know what we're saying:

There's a face that we wear in the cold light of day
It's society's mask, it's society's way
And the truth is
That it's all a facade.
There's a face that we hide till the night time appears,
And what's hiding inside behind all of our fears
Is our true self
Locked inside the facade!

Ev'ryday
People in their own sweet way
Like to add a coat of paint
And be what they ain't!
That's how their little game is played
Livin' out a masquerade
Actin' a bizarre charade
While playing the saint!
But there's one thing I know and I know it for sure
This disease that we've got has got no ready cure.
And I'm certain life is terribly hard
When your life's a facade!

Look around you I have found you cannot tell by looking at the surface what is lurking there beneath it!
See that face, now I'm prepared to bet you what you see's not what you get 'cause man's a master of deceit!

So what is the sinister secret?
The lie we will tell you is true!
It's that each man you meet on the street isn't one man but two!
Nearly ev'ryone you meet when walkin' down a London street pretends to be a pillar of society!
A model of propriety, sobriety and piety
Who shudders at the thought of notoriety!

The ladies and gents here before you
Which none of us ever admits
May have saintly looks
But we're sinners and crooks
Hypocrites!

There are preachers who kill
There are killers who preach
There are teachers who lie
There are liars who teach
Take your pick, dear
'Cause it's all a facade.

You must seem to be rich and have money to burn
Even though it's a bitch spending more than you earn
That's the game here
And the name is facade!

One or two
Might look kinda well to do
Ha!
They're as bad as me and you
Right down to their boots.
I'm inclined to think half mankind
Thinks the other half is blind.
Would'n't be surprised to find
They're all in cahoots!

And the end of the day
We don't mean what we say
We don't say what we mean
We don't ever come clean.
And the answer is it's all a facade...

Man is not one but two, he is evil and good
And he walks the fine line we'd all cross if we could.
It's a nightmare
We can never discard.
So we stay on our guard.
Though we love the facade.
What's behind the facade?
Look behind...the facade!

(My friend Jay, as the orderly, has that last line as a solo. It rocks.)

Congratulations, Bubby!

Today my brother graduates from OSU.
I cannot believe that he's old enough to do that.
Congratulations Bubby. :) :)




Saturday, June 07, 2008

Saturday rehearsal

Rehearsal this AM was methodical and the full two hours, just as I thought it would be. I got to the high school on this humid, sticky and gray morning to find a few of my cast mates listening to iPods in their cars, or trying to nap before rehearsal began in a few minutes. Along with the theater kids were numerous girls and parents for a dance recital that was to be held that afternoon.

Costume measurements continued apace. Our costume designer has sketched out the outfit for the "red rat" scene, which I had to say I like. Big bows for the hair, chokers, camisole, wispy skirts, heels and fishnet tights. (I have never worn fishnets). Our first dance rehearsal is on Monday at 7 on the stage proper.

"Facade" went well, with a few people off book, and a few people still on the score. For the most part, people eyed the script but didn't use it as a crib. That number is coming along very well, with only a few stops for polish here and there. The work of the day was devoted to "Murder, Murder!", the Act II opener, which goes for about 10 minutes, during which Hyde kills of the members of the Board of Governors that denied him a volunteer for his experiment in Act I. The chorus is on and off the stage, signing various things, throughout all of this, and, of course, acting as "extras" for whatever the scene requires (mourners, passengers at King's Cross, etc.). There are lots of solos, small groups, key changes, and even some Latin for the funeral scene (go Catholics who know this stuff...the two girls next to me looked a bit lost when we got there).

There are three other Cap alumni in the show with me--Amy (my year) and Mindy ('00) are a soprano and alto, respectively, and Chris ('07) is Lord Savage, but also sings in the chorus with us. Amy and Chris were members of Phi Beta, another arts fraternity on campus. It's nice to have some familiar faces to work with.

Ken, our conductor, is, as I've said before, very exacting, which is good, because that means when he says something was good, it was good. It's not just a platitude. And few things are more annoying in music than continually hearing mistakes in the rows, and the director either not hearing them or ignoring them. Ken doesn't do either.

So we have three rehearsals finished now. We also ordered show t-shirts today! Next week--Dance rehearsal Monday ("Bring On the Men"), Wednesday Chorus rehearsal (probably more "Murder!"), and Saturday AM chorus rehearsal.

The excitement, for me, continues. :)

Friday, June 06, 2008

Rehearsal #2...and #3

Number 3--tomorrow at 9 a.m. The joy!! :)

Notes from rehearsal two:

--Facade is to be "off-book" (theater talk for memorized) tomorrow. I'm good. We made excellent progress on Wednesday night.
--I am officially a "call girl" (to use the nicer term); I'll be singing in "Bring On the Men" and (I think) "Girls of the Night." We get to wear corsets and fishnets and God only knows what else for that scene...
--Some awesome solo work being done--truly excellent.

Thursday, June 05, 2008

There's always next season....

For now, it's Steeler time.
Thanks for a great season, guys.

Wednesday, June 04, 2008

Rehearsal!

Rehearsal number two--chorus kids--about to get underway (well, OK at 7:00, but I am leaving post-haste)

And game six!!!

Tuesday, June 03, 2008

Monday, June 02, 2008

Mel's graduation

Mel graduated from high school on Saturday--as her cake says, she's the "last one out." So here are some pics from the Weekend...





Sunday, June 01, 2008

First rehearsal

"The first rehearsal of a new show is a lot like the first day of school. You start looking around the room and checking everyone out." --John Antony, Making it on Broadway


The first rehearsal for Jekyll saw people initially divided into two groups: those who knew each other, and those who didn't. It was a bit like being the new kid in the class. Everyone staked out territory in the theater room where we were going to have our first rehearsal. I had gotten there first, even before the director, so I had no idea where to sit. I'm usually one of those kids who picks the front row, so that's what I did this time, center, right in front of the raised stage area.

People filtered in until about 9:05, when rehearsal began. There were all ages--one girl was leafing through a drivers' ed manual, and some people were probably grandparents. One of the sopranos had three kids and was selling leftover boxes of Girl Scout cookies. I'm used to being the youngest--or oldest--in a group, but being in the middle was sort of strange.

Robin (our director) began by passing around scripts, introducing the leads, and giving out the vocal scores. Her husband, Ken, is our conductor. I wasn't quite sure how we would approach the rehearsal--would it be a straight read/sing-through? Would we work on just certain pieces? Ken settled that very quickly by dividing the room into SATB sections--Sopranos on the right, tenors, basses, and Altos on the left. The boys, as usual, were outnumbered.

Our work for that rehearsal was the big opening number, "Facade", which involves everyone, except Jekyll (he's just sung two solos, so he needs a break). There are solo lines, group sections, parts for the principles, multi-part chords...it's a great opening number. We spent the entire rehearsal period dissecting it. For now, the solo parts, etc. were not assigned, unless it was written for one of the leads and so noted in the script. The Alto line is everywhere--with the sopranos, with the tenors, with the baritones. My highlighted pages for that are quite colorful. But, after a long dissection (Ken is a very exacting conductor from the start, which is great--"what you do in practice is what you do in performance," says the choral maxim), we ran the song twice, completely; once with the accompanist playing the vocal parts, and once with her playing the orchestral reduction.

I got a pretty good idea of how many numbers I'll be singing. All the women will be singing "Bring on the Men" and "The Girls of the Night", which I'm excited about--those are the, um, "prostitute" numbers in the show (this is also the scene where Jekyll meets Lucy). They are both a lot of fun, but completely different in tone. "Bring" is a pure come-on, while "Girls" is a more wistful, longing type of song. There are solo lines in each. There is also Jekyll'sone dance number in "Bring", and most of us signed up to be dancers. In high school, I never would have done that, but after my ballet classes I think I can handle it. I am very excited about that.

Immediately after the rehearsal I went to Staples and copied the score so I have my own--I like to mark and highlight, which is not allowed in the scores we're renting from a California Light Opera company. (We are doing the Light Opera version of the show, as opposed to the Musical version, because the LO version has a lot of great songs that were cut on Broadway.) I then proceeded to highlight and mark, so I feel ready for rehearsal on Wednesday. Most of our rehearsals, until we head into June, are going to be purely choral. The leads will rehearse on their owns. Dance rehearsals are on Monday nights and begin next week.

It is going to be a blast. I can't wait. (And we get show t-shirts!)

Next week: Choral rehearsal on Wednesday and Sat. Woohoo!

Friday, May 30, 2008

Tomorrow...

is going to be a rockin' day!

--Mel graduates from high school!
--First J&H read (sing?) through at 9
--relatives coming in for the party
--Penguins game!!!

Going to be a long day...up at 7:00....go to bed....whenever....

Wednesday, May 28, 2008

A random Hockey Rant

Can one of the NBC analysts at least PRETEND to be neutral?
The Pens are up 2-1 with a 2-0 series deficit. And at the end of the period, the announcer is saying things like "Detroit is only one down" and "the red wings had a lot of good chances that period."

Um, excuse me. Right now, they are LOSING. Can we stop being a cheerleader??? Huh? (We'll see, momentarily, if the Pens can hold the lead...)

Audition

[t]here has to be some seduction. That seduction is easier when you have a partner who would like to be seduced...[The] only position to take in an audition--you have to preserve your outsideness as a platform from which yuo seduce others, while at the same time you have to do what it takes to get the job. --Anna Deavere Smith, Letters to a Young Artist


The drive to the audition was 45 minutes long. I was in good voice. To prep, I had the original Broadway Cast recording playing in my car. It's a long CD, so I wasn't too far into it by the time I reached the suburb where the high school was located. As I neared the school, Robert Cuccioli started singing "This is the moment", which has been dismissed in some quarters as "ice rink music" for its over-played appeal. The song is about taking chances, jumping off cliffs, going it alone, "damn[ing] the odds." It was a good song for driving into the parking lot.

I was early; not really early, but early. There were a few other scarcely populated cars in the lot, and the occupants appeared to be younger than me by at least eight years. I managed to console myself with the thoughts of all the times people had asked me when I was going to graduated from high school. I don't look twenty-six.

The audition began at 2:00. At around 1:50, I saw a couple get out of a small green coupe and head toward an entrance. I had never been to this high school so I didn't know where I was going. I followed them. The girl was small and pixie-ish, with short, close-cropped dark auburn hair and wearing a forest-green tank top with her jeans. I relaxed. I hadn't known how to dress for this audition, so I had chosen an Ann Taylor loft top with a scooped neck, jeans, and my ballet flats, in case dancing was required (no, not my technique shoes from dance class--a pair of Steve Maddens I had bought last summer at Macy's). I was comfortable, I felt good. My hair fell in waves and curls around my shoulders. I had gone to Saturday night Mass, so I had gotten to sleep in. My skin looked good.

We entered the high school a few steps away from the theater. The cafeteria was in front of us, and I could see a jungle-like courtyard beyond the glass doors, like my high school had. The doors to the auditorium were on the left.

The stage was bigger than my old high school's, the seating wider. There was little by way of sound absorbing materials on the walls, so I knew my voice would carry. One of the voice professors at Capital called me "the little girl with the big voice." I looked like I could play Laurie in Oklahoma!but a had a voice of a Sally Bowles, a Marguerite, an Elphaba. It's been big since I was a kid.

The director was there, handing out information slips. "Name/address/phone number/email". Easy stuff. Nothing about age or credentials (even though I would've felt fine listing those). "Part you are auditioning for." I scribbled "Lucy/chorus." I knew the chances of me getting the female lead were slim. For one, I'm sort of small (5'3"). I'm a blonde. I look like some 1930s film ingenue. Not a sexy call girl. But what the heck. Really, I would take anything. I had loved this show since I was 14 and had first seen it at the Ohio Theater.

The girl next to me filled in "Emma/chorus" in that slot. She was a junior at Cap and just looked like Emma--small, fine-boned, blonde hair. Perfect.

"Will accept any part?" YES, I circled, almost too enthusiastically.

I had no conflicts to list. My form was complete. I turned it in, as part of the building pile on the edge of the stage, and leafed through my song book. I had brought "Storybook", my no-fail, go-to number for everything. It was from , the show Frank Wildhorn wrote right after Jekyll. The piece was big, bold, and perfect for my voice. It would fill the theater easily. And it had a bit of a sassy swing to it. Also, it had the tremendous benefit of being relatively obscure, which meant the risk of other girls singing it was low.

I was right on that count--by the time the auditions were over, two girls had sung "When I look at you" from the show, but not "Storybook." Since my piece is 18 pages long (with the repeat), I told the accompanist I would only sing the first verse. I wanted to sing the French at the end (It's a key change, too--more impressive), but that would've made it too long. I didn't want to bore them.

The auditions were in front of all 50 some people that had come out that day. There was no assigned order--we just got up when we felt ready. I went in about the middle of the pack. I took my music to the accompanist, explained what I wanted to do, gave my tempo, and took my mark.

I introduced myself to the director and his wife. They shuffled for my audition sheet. The song began.

Even though I was a bit off with the accompanist, I felt like I had it. I made eye contact. My voice filled the room. I heard nothing but me. People were smiling. There was engagement. My body swayed to the quick waltz tempo of the piece; it's a very easy piece to emote. Marguerite is trying to seduce men in order to get information. I was, in a sense, seducing the panel.

At the end the direector asked my last name again. Apparently she'd missed it when I'd given it. When I returned to my seat, the woman behind me said, "that was lovely." I hoped so. It felt solid.

I stayed to read two scenes as Lucy; one with Jekyll, one with Hyde (played by the same actor). That was easy, too. I felt rapor with the man I was reading with. It was comfortable.

As I left the audition and drove home to meet my friends for dinner, I felt confident. At the very least, I'd given it my best effort, which is all you can do. If the director wants you, he'll take you. If not, then he's looking for something else. Which may sound obvious, but is hard to remember when you've given it your best shot. But at least I had that consolation.

Some of the girls were in black dresses and sparkly jewelry. Others had professional head shots with their resumes printed on the back. I had a vocal resume, but I hadn't brought it. I most certainly didn't have a head shot. I felt like I'd fallen into an alternative universe. I had a voice, and I had the experience. In the end, that's what matters. A fancy head shot isn't a substitute for a good audition and stage presence.

New posts!

Up at Poster Girl (yeah, OK, it's been awhile...)

Tuesday, May 27, 2008

Music time

OK, yes, I may be going a bit overboard with the Theater thing (hey, you can choose not to read this!), but I had to post one of the songs from the show here. Jekyll sings it right before he injects himself with the formula that will turn him into Hyde.

This is the moment.
This is the day.
When I send all my doubts and demons on their way.
Ev'ry endeavor I have made ever
Is coming into play.
Is here and now...today.

This is the moment.
This is the time.
When the momentum, and the moment, are in rhyme.
Give me this moment
This precious chance.
I'll gather up my past,
And make some sense at last!

This is the moment!
When all I've done
All of the dreaming, scheming and screaming become one.
This is the day.
See it sparkle and shine.
When all I've lived for becomes mine!

For all these years
I've faced the world alone!
And now the time has come
To prove to them I made it
On my own...

This is the moment!
My final test
Destiny beckoned, I never reckoned second best!
I won't look down
I must not fall
This is the moment
The sweetest moment of them all!

This is the moment!
Damn all the odds!
This day or never I'll sit forever with the gods!
When I look back
I will always recall
Moment for moment
This was the moment...
The greatest moment of them all!

Monday, May 26, 2008

Further stage thoughts...

In the euphoria of the moment, I sort of lost the perspective, didn't I?
Well, not really. I just didn't writethe perspective at that particular moment. It was pure joy.
A chorus part may seem rather insignificant to those of us who know theater, or even those who don't, but can imagine. It's like the corps de ballet--one of the masses. But as Eliza Ganor Miden says in her book, The Ballet Companion,
The reality behind the ballet blancs's beauty is that the corps dancers earn every bit of their applause. Uniformity requires a lot of work and tremendous devotion to detail. Members of the corps leave their individuality in the dressing room...they are the junior dancers in a ballet company, with the lowest pay, the lowest status, and in many ways the hardest work--sometimes eight shows a week. And almost without exception, every great ballerina starts there (92).

Not that I think I'm going to be the next Linda Eder, here. :)
But beyond that, beyond the theatricality of it, is the sheer joy that I am here to do it. The chorus in J&H is on stage for much of the show, and it's an up-tempo show. I am expecting to be "run off my feet." And I am so looking forward to it. It's been years since I've been in a show and I have missed it tremendously. My voice is in better shape now that it ever has been, I think.
And I made the show with the CI! How cool is that?! I mean, a year ago I had just had the implanting surgery. We had no idea what was going to happen. And I've adjusted so well now that I made a musical. If I had been horrifically bad, that surely would not have happened.
Without my donor, this wouldn't have happened.
My performance on July 11 will be dedicated to my donor. I might not say that in the program, but it certainly will be in my heart. Because I would not be there without her. I would not be here without her. Every step I learn, every chorus we rehearse, every move that's blocked and every costume change is possible because she made the Vital Choice.
The next 43 days will have me thanking her constantly. And thanking God that this has happened for me.

:) :)

For more info on the show, go here.

I made it! I made it!

I am in the chorus for Jekyll and Hyde!!!!!
Performance Dates: July 11-13 at Hilliard Davidson High School. Times are TBA here....
I am expecting y'all to come out. :) :)

First rehearsal is on Saturday at 9!!!

Saturday, May 24, 2008

The Annual Book Projects

This year's choices:

Great Russian Novel: Crime and Punishment.

And, of course, The Great Jane Re-Read.
First up (as always): S&S

How to be happy

(Well, in someone's opinion)


In 1820, English writer Sydney Smith wrote a letter to his unhappy friend, Lady Morpeth. He offered his tips for how to be happy – and his suggestions are as sound now as they were practically 200 years ago.

"1st. Live as well as you dare.
2nd. Go into the shower-bath with a small quantity of water at a temperature low enough to give you a slight sensation of cold, 75 or 80 degrees.
3rd. Amusing books.
4th. Short views of human life - not further than dinner or tea.
5th. Be as busy as you can.
6th. See as much as you can of those friends who respect and like you.
7th. And of those acquaintances who amuse you.
8th. Make no secret of low spirits to your friends, but talk of them freely - they are always worse for dignified concealment.
9th. Attend to the effects tea and coffee produce upon you.
10th. Compare your lot with that of other people.
11th. Don’t expect too much from human life - a sorry business at the best.
12th. Avoid poetry, dramatic representations (except comedy), music, serious novels, melancholy, sentimental people, and everything likely to excite feeling or emotion, not ending in active benevolence.
13th. Do good, and endeavour to please everybody of every degree.
14th. Be as much as you can in the open air without fatigue.
15th. Make the room where you commonly sit gay and pleasant.
16th. Struggle by little and little against idleness.
17th. Don’t be too severe upon yourself, or underrate yourself, but do yourself justice.
18th. Keep good blazing fires.

Wednesday, May 21, 2008

Interview

I think (hope, hope, hope) that my interview today went well. I met with the Directors of State and Federal Government Affairs and we talked for about 40 minutes. The office isn't too far from where I am now, so I'd still be downtown, which is nice as I like it down there. Apparently I am one of the first ones they interviewed so it will be awhile until I hear anything else.

But fingers crossed for good things!!

Sunday, May 18, 2008

Pens win! Pens win!`

6-0 to head to the Finals! Detroit, here we come!!!!

Weekend Adventures in Baking

This weekend's new dessert?

This.

It is currently cooling on my counter--I will let you know results.

The Lucky Muffins really ARE lucky!

So the Victory Muffins I wrote about a week or so ago are proving their luckiness--many times over!

--My brother qualified for the Boston Marathon today after running the Cleveland Marathon in a little over 3 hours!
--My sister has a good orientation at Capital yesterday, including doing tres bien on her French placement test, so she can go right into Intermediate French (a class I took, and with the same professor!).
--I have an interview with Children's Hospital for a position in their government relations department on Wednesday!
--Oh, and Big Brown won yesterday.

So make some of these muffins and see if they work for you. :)

Friday, May 16, 2008

Woohoo!

After three years, guess what night it is?
Guess what night it is???
PRINCE CASPIAN NIGHT, Y'all!!!!! :-D :-D

Monday, May 12, 2008

Thundercats are Go!

(No idea why I used that title, but oh well!)

Everything is good w/ Dr. A and Co. Weight is good, PFTs are good, everything's good. Apparently the incision issues are various nerves regenerating and firing off. Ballet, yoga, pilates (all those things I do) are good for stretching this area out and making it happy. So yay!

Sunday, May 11, 2008

Tomorrow...

Is another Day with Todd!!
I am sort of ambivalent about this visit.

Pros:

--I've lost weight, huzzah!

Cons:
--My incisions have been sore/painful for the past few days. This hasn't happened to me before. I've read it's a sign of rejection. I hope not.
--My appetite has been yo-yoing back and forth.
--I've been nauseous on and off.
--I've been sleeping a lot more than usual, and hard. My naps are not naps--they are like mini-bedtimes. This is not so happy.

So we'll see what the verdict is. I'm also seeing Dr. Hardin (my endocrinologist). I've given The Resort The Entire Day to Do What They Will With Me.

Woot!

The Lucky Muffins Strike Again!!

Pens-2. Philly-Zip. :-D

Mother's Day

I read a stat the other day. It said that stay at home moms would be worth approximately $117,000 if they were paid according to market demand.

I think my mom would be worth more than that.

Not just because she's my mom, but with me as her kid, you'd have to tack on a nurse's salary, too, which would put her earning power at more than $200,000, probably (beating my dad--sorry dad!).

My parents have split the Emily duties--Dad usually does the ER runs, the surgery runs, the let's go out of town and visit doctors who know nothing runs. He also Handles the Insurance Company (that's a biggie). Mom does the day to day Children's stuff, the meds, makes appointments, takes me to appointments, and does fun stuff like wash my hair, flush my port, change burn dressings, etc., etc., etc. That's a lot of work. Trust me. And we've had to be fairly inventive as the years have gone on. Washing hair with a PICC, for example, is different than washing hair with an accessed port.

Somehow in the midst of all this fun, Bryan and Mel also got raised and fed and taken to soccer, football, marching band, tennis, etc., etc., etc. I had voice lessons and dance classes and choir rehearsals. Meals got made and Christmas presents bought (Mom is, without a doubt, the Champion Christmas Shopper of the World. She is just awesome.). School projects got done, including counting pieces of litter in Blacklick Woods for a 5th grade "cluster" project. We went prom dress shopping and headed to hair appointments.

When people talk about "working mothers," they're usually leaving my mom, and all the other Stay and Home Moms, out. This irritates me. My mom certainly works, and works hard!! She's worked the equivalent of two jobs for, oh, 26 years now. That's not easy. And there's no paycheck, no reward banquets, no bonuses, not even cool lunches at fancy places with The Boss. If Mom had worked at a "real" job, then I have no idea what would've happened to me (or the rest of us). Part of successful CF and post-tx care is having a strong support system. In the weeks after tx, we were at The Resort almost every day. I couldn't drive for three months, and Dad had to work. What were we supposed to do? So mom took me and hung out in waiting rooms while I did PT and OT and all that good stuff. It takes time to learn to change dressings, access ports, and make sure all the meds are going right. I was sort of half there, what with all my drug interactions and such. Someone needed to take charge. And that was mom.

I would put up a pic of mom, but she's picky about that, so I'll just say we look alike. :) That should give you an idea.
Happy Mother's Day!

Saturday, May 10, 2008

Baking--Mario's Banana Butterscotch Victory Muffins

Last week, as I was watching the Penguins play an agonizingly close third period against the New York Rangers, I was struck with inspiration.
Cheering for your team (very, very loudly) can make a girl hungry. When the game broke for the intermission before sudden-death overtime, my culinary instincts awoke. I had just gotten Nigella Lawson's cookbook, Nigella Express, and had tabbed the banana-butterscotch muffins as something worth trying. I had two ripe bananas on my counter. I was hungry. I had about 15 minutes before the game came back. So I made muffins.
The Penguins won.
Coincidence? I think not!

The Penguins are 1-0 in the Conference Finals against Philly. There's a game tomorrow. These muffins will be there.

Mario's Banana Butterscotch Victory Muffins
(from Nigella Lawson's Nigella Express)

1/2 c. vegetable oil
2 eggs
1 2/3 c. flour
1/2 c. sugar
1 tsp. baking powder
1/2 tsp. baking soda
1 1/4 c. mashed bananas, about 2-3 ripe (I mash them with my hands!)
1 c. butterscotch (or chocolate) chips

Preheat oven to 400 degrees and line a 12-cup muffin pan with paper liners (I use silicone).
Measure the oil into a large glass measuring cup and beat in the eggs.
Put the flour, sugar, baking powder and baking soda into a large bowl and mix in the liquid ingredients, followed by the mashed bananas. (The mixture will look crumbly)
4. Fold in the butterscotch chips, then divide equal quantities into the muffin pan. Bake for 20 minutes.

Note: I suppose, since all Pittsburgh pro sports are black and gold, you could use 1/2 c. butterscotch and 1/2 c. chocolate chips, for a theme. That might be going too far. But I doubt it.

Tuesday, May 06, 2008

Teeter-totters for CF

Gotta love this fraternity:

Phi Delta Theta teeter totter for Cystic Fibrosis

Eighth annual philanthropic event brings positive attention to both the disease and the fraternity

By: Lexie Imhaus

Posted: 5/6/08

The gentlemen of Phi Delta Theta have finished yet another successful year of their annual philanthropy Teeter Totter event that helps raise money for Cystic Fibrosis research. Students may have noticed the presence of a blue and white teeter totter from April 30 to May 1, as well as a big cluster of fraternity guys and occasional girls, but this philanthropy proves to be more eventful than the eye can see.

"Organizing an event like this gives Phi Delta Theta an opportunity to inform the school and community about CF and gives the students a chance to learn and foster good relationships with the public at large and help with such an important cause," said the philanthropy chair Andrew Norwine.

Phi Delta Theta originally put this philanthropy on for Lou Gehrig, a famous baseball player and alumnus of Phi Delta Theta. But when tragedy struck one of their Cal Sigma Brethren, Woody Bolin, who died tragically in August of 2006 from cystic fibrosis, the brothers of Cal Sigma decided to honor him by changing the cause of this philanthropy from benefiting Lou Gehrig's disease to Cystic Fibrosis.

Cystic Fibrosis is a hereditary disease that affects the mucus glands in the lungs, pancreas, liver and intestines in the human body which slowly attacks and disables the patient's body. There is still no cure for Cystic Fibrosis and most people die young from this terrible disease, most commonly in their 20s or 30s. Although there is still hope for people diagnosed with Cystic Fibrosis. New treatments are continually being introduced and patients now have a possibility of living well past their 40s and into their 50s.

This was the eighth annual teeter totter event. The boys stayed out in the Stevenson quad for 48 hours straight, all the while switching for shifts during the day and all throughout the night to bring awareness and raise money for their philanthropy. The Teeter Totter was originally built by a member named Casey Caldwell in spring 2000 and they have used the same structure ever since, making only slight modifications each year to ensure safety and comfort.

Every year the men of Phi Delta Theta make sure to schedule the philanthropy before the Cystic Fibrosis walk that takes place every year in San Francisco. This philanthropy also includes the women of Alpha Gamma Delta; coincidentally Woody Bolin married an Alpha Gamma Delta. In honor of her husband, Allison Bolin accompanies the Phi Delta Theta's.

During the 48 hour event, students, faculty and staff are encouraged to donate money and members of sororities bring food and baked goods to help promote and support the Phi Delta Theta members in their philanthropic endeavors.

"As president I can honestly say that Phi Delta Theta looks forward to and anticipates this philanthropic event each and every year, and I feel privileged to be a part of such a excellent event," said Matt Haman.

"I think Teeter Totter is nothing short of amazing. It's where all the students can get involved and actively participate. Since it is all night and all day for 48 hours, it shows the dedication the Phi's have towards their philanthropy," said Lauren Morse of Alpha Xi Delta.

Even alumni from Phi Delta Theta show their continued support.

"I'm proud to see the current brothers join alumni supporting this event for Teeter Totter and the CF walk. It's good to see the current brothers carrying on our long time tradition of the Teeter Totter" said alumni Frans Moerbeek.
© Copyright 2008 Sonoma State Star

Thank you, Nurses!

Today is National Nurses day, which coincides fantastically w/ CF awareness month!
Nurses, in both CF and transplant care, are the ones on the front lines with you. They give the drugs, hold your hair when you're vomiting, go to bat with the docs on your behalf. They wash your hair, help you get dressed and set up the tub for you when you want to get clean yourself. They will also come and visit you after hours and sit with you while your lung are collapsing, trying to keep you calm while working swiftly to get you the care you need.
I love all the nurses at Childrens'! Thank you SO MUCH for all you do!
Later today (I hope)--some nursing highlight stories. :)
Off the top of my head, thanks to: Terri, Patti, Barb, Rita, Jenny, Teresa, Karen (!), Cathy, Beth, Julie, Megan, all the CF nurses and TX team nurses that I'm forgetting....thank you!!!

Monday, May 05, 2008

The Butterfly Whisperer






Yesterday at Franklin Park Conservatory

CF posts of randomness

So since May is CF awareness month, I thought I'd do a series of random posts about CF, how it affects my life, etc., as well as debunking any myths that need, well, debunked.

First, a quicky summary for those of you who may be joining us late. I was diagnosed late, for CF standards, when I was diagnosed at the age of 11. Until then I had had no real pulmonary symptoms. I had a constantly runny nose, which was misdiagnosed multiple times, as well as an inability to gain weight. At the start of sixth grade, I weight 58 pounds. Now Ohio, like many other states, includes CF in the mandatory newborn tests that all babies undergo, so I would've begun treatment much faster.

CF affects most of the body, but primarily the pulmonary and digestive systems. Once I started enzyme therapy, I gained weight fairly well (until the ever-present infections showed up), and had a relatively mild case until I was in high school/ college. After being in the ICU for two weeks during my sophomore year (Oct. 2001), my lung function rapidly started to go downhill, and transplant was mentioned. I was listed in May 2005, after finishing my college education at Capital University in May of 2004. Due to a ridiculous amount of Irish and German stubbornness, I graduated with the rest of my class, with majors in Political Science and English Literature.

I was on the list for a little over a month when I received the call for transplant on July 10, 2005. I was the first double lung transplantee at Children's, so I am forever inscribed in their History Books. :) There were many ups and downs, and you can dig around in the archives for that.

Some things about CF that are important to know:
--It DOES NOT affect your mental capacity
--Women with CF can get pregnant. Men are usually sterile.
--Some CF patients develop diabetes, some don't. CF-related diabetes is different than regular diabetes. I developed it post-transplant, which can happen due to the steroids and anti-rejection drugs. I think we've got a pretty good handle on it, though.
--People with CF often look perfectly normal from the outside. Do not assume that they're "fine" if you see them emerge from a handicapped parking space!!! (This is a huge pet peeve of mine)
--The gamut of CF is far and wide. Some people have very mild cases. Others receive transplants while in their teens. Some have feeding tubes, others are on supplemental oxygen constantly. Some people are in and out of the hospital and some are hardly ever there.
--For some reason, the joints can be affected in CF. I had lots of joint pain from my sophomore year of high school until after my transplant. However, when it's cold I still get joint pain. The steroids help a lot here. That's another reason the handicapped placard is my friend.
--Life expectancy, as ever, is an AVERAGE. Some kids die when they're 17, and some are joining AARP. If you know someone w/ CF, DO NOT automatically think you're going to outlive them. It may not be the case.

Saturday, May 03, 2008

Poster Girl...

After a hiatus, there's some new stuff up over at the Poster Girl.

Culture Cat: Romeo and Juliet



Last night I attended BalletMet's final performance of the season, David Nixon's Romeo and Juliet, set to the music of Prokofiev. The entire 30th Anniversary season has been spectacular to watch, but this finale was a glorious way to end the celebratory season. While the story is familiar, Nixon's fresh choreography, along with the elaborate sets and gorgeous costumes, create a fresh take on the ancient story and,in some case, even improves upon it.

The ballet is divided into three acts, leading to some initial confusion as to where the intermissions would fall (it comes after Act I--Acts II and III are performed together, with slight breaks in the action for costume and scenery changes). While this is less than Shakespeare's five-act play, I found Nixon's version to be an improvement by focusing more on the essential story and eliminating some of the extraneous scenes found in the play.

The casts, as usual, rotate, but I feel that Friday night's cast was absolutely pitch-perfect in their dancing and interpretation of their parts. Adrienne Benz and Christian Broomhall played our title lovers, and I was enchanted by their dancing the entire evening. They were arresting. I had seen Mr. Broomhall dance in the title role in Aladdin earlier this season, and I greatly enjoyed seeing him tackle a major role again. His Romeo was a bravura mix of passion, melancholy (as he pursues Rosalind in Act I), love and even rage, during his Act II duel with Tybalt.

I had not, however, seen Ms. Benz in a leading role. Her Juliet was the appropriate mix of youthful energy (she is, after all, barely 14) and young love that evolved into deep passion and despair by the end of the evening. In Act III, Juliet is almost constantly dancing. Ms. Benz never for a moment showed the effort that must have taken and was mesmerizing in her Act III solo where she vascilates between taking the poison the Friar (Jimmy Orrante) has given her, or marrying against her will.

The lovers' two grand pas des deux, the "Balcony Scene" in Act I and in Act III, before Romeo's banishment, are intensely dramatic and technically demanding. I cannot say enough good things about their dancing.

The rest of the cast easily equalled the virtuosity of our leading pair. Especially notable were Justin Gibbs as Tybalt (especially in his Act II duels with Mercutio and Romeo) and Christine Mangia as Lady Capulet. Her dancing demonstrated her character's regal bearing, but she was even more powerful in her demonstrations of grief following the deaths of Tybalt and Juliet. Lord Capulet, danced by Company Ballet Master Hisham Omardien, did his best dancing when interacting with Juliet. Their tender relationship in Act I lead perfectly to the breakdown of it in Acts II and III, when Juliet refuses to marry Count Paris (elegantly danced by Jackson Sarver). Nixon's choreography demonstrates Juliet's emotional detachment from her father in a series of steps where he tries to embrace her, only to have her step out of his arms before he can hold her. It is simple, but powerful.

Other standouts among the cast included Jeff Wolfe as Mercutio and Catherine Yoshimura as the hysterically funny Nurse. She and Wolfe had several scenes together and their comic timing was impeccable. Juliet's relationship to the Nurse is critical to any performance of Romeo and Juliet, whether in ballet or the theater, and here it was tender and teasing, with the Nurse serving as Juliet's protector and confidante.

The ballet was truly perfect, and an excellent way to end BalletMet's 30th Anniversary season. Now I have to wait for July to see any new ballet, which seems very far away right now.

Friday, May 02, 2008

Book lists

Here's a book list my buddy Richelle recently forwarded to me; the ones I have read are bolded, the ones I own but have not started are in italics.

• Jonathan Strange & Mr Norrell
• Anna Karenina
• Crime and Punishment
• Catch-22
• One Hundred Years of Solitude
• Wuthering Heights

• The Silmarillion
• Life of Pi : a novel
• The Name of the Rose
• Don Quixote
• Moby Dick
• Ulysses
• Madame Bovary
• The Odyssey
• Pride and Prejudice
• Jane Eyre
• The Tale of Two Cities

• The Brothers Karamazov
• Guns, Germs, and Steel: the fates of human societies
• War and Peace
• Vanity Fair
• The Time Traveler’s Wife
• The Iliad
• Emma

• The Blind Assassin
• The Kite Runner
• Mrs. Dalloway

• Great Expectations
• American Gods
• A Heartbreaking Work of Staggering Genius
• Atlas Shrugged
• Reading Lolita in Tehran : a memoir in books
• Memoirs of a Geisha
• Middlesex

• Quicksilver
• Wicked : the life and times of the wicked witch of the West
• The Canterbury tales

• The Historian : a novel
• A Portrait of the Artist as a Young Man
• Love in the Time of Cholera
• Brave New world
• The Fountainhead
• Foucault’s Pendulum
• Middlemarch
• Frankenstein
• The Count of Monte Cristo
• Dracula

• A Clockwork Orange
• Anansi Boys
• The Once and Future King
• The Grapes of Wrath
• The Poisonwood Bible : a novel
• 1984

• Angels & Demons
• The Inferno
• The Satanic Verses
• Sense and Sensibility
• The Picture of Dorian Gray
• Mansfield Park

• One Flew Over the Cuckoo’s Nest
• To the Lighthouse
• Tess of the D’Urbervilles
• Oliver Twist

• Gulliver’s Travels
• Les Misérables
• The Corrections
• The Amazing Adventures of Kavalier and Clay
• The Curious Incident of the Dog in the Night-Time
• Dune
• The Prince
• The Sound and the Fury
• Angela’s Ashes : a memoir
• The God of Small Things
• A People’s History of the United States : 1492-present
• Cryptonomicon
• Neverwhere
• A Confederacy of Dunces
• A Short History of Nearly Everything
• Dubliners
• The Unbearable Lightness of Being
• Beloved
• Slaughterhouse-five
• The Scarlet Letter
• Eats, Shoots & Leaves

• The Mists of Avalon
• Oryx and Crake : a novel
• Collapse : how societies choose to fail or succeed
• Cloud Atlas
• The Confusion
• Lolita
• Persuasion
• Northanger Abbey

• The Catcher in the Rye
• On the Road
• The Hunchback of Notre Dame

• Freakonomics : a rogue economist explores the hidden side of everything
• Zen and the Art of Motorcycle Maintenance : an inquiry into values
• The Aeneid
• Watership Down
• Gravity’s Rainbow
• The Hobbit
• In Cold Blood : a true account of a multiple murder and its consequences
• White Teeth
• Treasure Island
• David Copperfield
• The Three Musketeers


There is always, ALWAYS more to read...

Tuesday, April 29, 2008

Why I blog II

For girls like Jordan: (emphasis mine)

Local teen waits for lung transplant

Brenda Tollett Associate Editor

Ada— As students at Ada High School prepare for summer break, 17-year-old Jordan Lee Ulrich waits for a lung transplant.
The Ada teen was was born with Cystic Fibrosis and has spent much of her young life in hospitals.
“Not a single year has gone by when she didn’t have to be hospitalized,” said Lesa Ulrich, Jordan’s mother. “In 2007 alone, Jordan was admitted to Dallas Children’s Medical Center in February and stayed until April. She was there again in July. In September she went for her transplant evaluation at St. Louis Children’s Hospital in St. Louis, Mo. Shortly after returning to Oklahoma she had to be hospitalized again in Dallas for all of October, November and most of December.”
Now she waits at St. Louis Children’s Hospital for a new lung to become available.
Until late 2007, Lesa Ulrich said her daughter had done surprisingly well. She began having trouble controlling pain in her lungs and couldn’t breath without an oxygen machine.
“On Christmas morning, she wanted to come downstairs to open presents,” Lesa Ulrich said. However, the teen was to weak to walk. Her father, Dr. John Ulrich, carried her down the stairs but within 10 minutes she exausted.
Her routine follow-up appointment with the St. Louis transplant team in March 2008 turned into a three-week hospital stay, leaving the family totally unprepared. “Upon arriving at her appointment, Jordan’s pulmonary function test scores were very bad,” said her mother. “We had actually already checked out of our motel and were on our way home when St. Louis (transplant team) called and asked us to return.”
Hospital officials, according to Lesa Ulrich, were concerned her daughter wasn’t well enough to return to Dallas. Using four of the strongest IV antibiotics, Jordan Ulrich was tested again one week later. Her scores were even lower than before and have continued to drop.
Fundraising for Jordan Ulrich’s transplant is required by the hosptial in St. Louis, according to Lesa Ulrich. In addition to costs associated with the transplant, funds are also needed for transportation, lodging, food, and medical supplies. A transplant fund has been established in Jordan Ulrich’s name at East Central Credit Union, 801 E. Main, Ada.
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States. According to the Cystic Fibrosis Foundation, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
When the Cystic Fibrosis Foundation was established in 1955, most children did not live to attend elementary school. Today, the predicted median age of survival is 37 years.
People with CF can have a variety of symptoms, including:
✔ very salty-tasting skin;
✔ persistent coughing, at times with phlegm;
✔ frequent lung infections;
✔ wheezing or shortness of breath;
✔ poor growth/weight gain in spite of a good appetite; and
✔ frequent greasy, bulky stools or difficulty in bowel movements.



You know the part that got me? The part about being able to enjoy Christmas for only 10 minutes.

I love Christmas, as anyone who knows me even slightly will tell you. It's such a major event for me. I go hog wild with cards, presents, and church choir stuff. It really is "the most wonderful time of the year." If I could only celebrate for ten minutes....I can't imagine. That's always been a "normal" day for us. I have never (thankfully!) spent it at The Resort.

One year I was on home TPN and lipids and Mom insisted I keep on the "feed" while we opened gifts. I was not happy. But I have always enjoyed Christmas day and our Christmas festivities in general. OK, yes, once I was a Branden's Christmas party doped up on phenergan, but I don't think anyone noticed. :)

Pray that Jordan has a better Christmas this year. She deserves it.

Thoughts--Dignity with a chronic illness


"Do you know anything about multiple sclerosis?"
"Only what I've read...I had a patient...who had it...But she was great. She didn't let anything stop her. Even using a walker. She danced with her walker."
"Christ, I hope that doesn't happen to my mom...It's like what you said about her being so into her dignity...she'd feel like she could never go out of the house."

--J. Mitchard, The Breakdown Lane


The Breakdown Laneis a new Jacquelin Mitchard book that deals with a bright, vibrant woman who is diagnosed with MS at the same time her husband leaves her. She has three kids. She's a ballet dancer. She's used to having it all together. She has a certain image she presents to people.

The above excerpt is from a conversation her son is having with a old friend of Julianne's (the mom). And the part about dignity certainly rang true to me, even though CF and MS are vastly different things.

For me, it was oxygen. I knew I would never leave the house if I was ever on oxygen therapy (other than at night, when it didn't matter...I was 23, I wasn't married, who cared?). There was no way that would happen. I was the go-getter, the one who organized, who planned, who did everything. Oxygen so didn't jive with that image. Plus, my friends didn't like using the handicapped placard. How would they deal with a twenty-something who lugged around and oxygen tank?

I did just about everything else--I went out with the port accessed, I went to school with PICCs and on IV therapy, etc.But I always covered it up, and I never told anyone unless they reallyneeded to know. Pity was not high on my list of desirable emotions. And nothing said poor kid to me more than the emaciated CFer on oxygen therapy.

When the Cleveland Clinic suggested I start in about a year before my transplant, I freaked out so much I called my CF clinic, who was Not Pleased with this development and took the clinic people to the woodshed. I just hated the entire idea of being tethered to something that would so visibly demonstrate the lack of ability my body had to take care of itself. I didn't want pity AT ALL. That was verboten. Totally.

Thankfully we never got to that point--I only did nighttime supplemental oxygen before my transplant.

Dignity is very important when you've got a chronic illness. It's one of the only things you can control--how other people see you, or remember you. Certain people see it all--they hold your hair when you vomit, they know you don't eat, they help you to the bathroom, they change the IV dressing. But this is a pretty elite circle. Not everyone can handle it. And even if you think some people can, you might not want to let them in anyway. I wanted my friends to keep a certain image, or impression, of me. Is this all mentally healthy? I don't know. But it's how I handled it.

Saturday, April 26, 2008

Spring has sprung

And that means....Emily busy. :)


--First of all: Go Pens! What a game!

--This April has been one of the nicest I can remember,if not thenicest. It didn't rain or snow on my birthday, which is a major weather accomplishment. And it's just been beautiful all around. On Thursday Karen and I went out to eat at a restaurant in the Arena District, sat on the patio and ate appetizers while people walked and jogged by (or walked their dogs). It was a perfect night for that, and it was so much fun to just sit there and enjoy good food and being in good company.

A note about that last part--none of it would've been possible without my donor. Since it's donate life month, if you AREN'T an organ donor (and seriously, kids, why aren't you?), go do it, please? The little miracles that result from your decision are so important.

--Reading is just insane. I have way more books that I know what to do with. Time for another book shelf....

Tuesday, April 22, 2008

5Ks...and other things

I think I'm going to do the Race for the Cure in May. We'll have to see how motivated I am, because I don't want to just do it (I know I can walk it), I want to do it well. So that means more hitting the treadmill, and going outside once Tiff is home and I can walk with her and the canines. And there's the Dash for Donation in July, which is always a Big Event for me.

Speaking of LOOP stuff, tomorrow is the annual Candlelight Vigil, so if you're in town, come out! I'm working the food tent pre-event (I know, I know...I will not eat all the cookies, I will not eat all the cookies!). It's a great event and we'd like to see many people!

I am on a book binge. I have so many books yet to read it's sort of ridiculous. I think I've got about four working currently. Yikes.

Thursday, April 17, 2008

Better still....

Cough is getting better. And good thing, too--it's going to be 76 degrees today.
76 degree days were NOT meant for hanging out at the Resort.

Tuesday, April 15, 2008

Update

well the cough is not as bad, so that's good. I'm still coughing a bit, however, and bringing up lovely samples!
Chest pain also still happening, along w/ some light-headedness. I thought I was having an out-of-body experience today during session....that was fun.
Have to call High Command to check in tomorrow, so we'll see.

Housekeeping

Lots of new stuff, so scroll down...

This is why I blog

So that more Emilys can live:

Emily Haley, whose battle against cystic fibrosis led the community to raise about $500,000 for a double lung transplant, died early Monday. She was 14.

“She fought this hard until the end,” said her aunt, Patty Grimes.

Family members said that Emily was doing well until a few weeks ago .

“Things took a turn for the worse,” said her father, Bill Haley. “She couldn’t fight an infection.” She died at Children’s Hospital of The King’s Daughters in Norfolk.

Over the past two years, the condition of Emily’s lungs had not deteriorated to the point where she needed the transplant. If she had beaten the infection, she could have flown to St. Louis, Mo., for the operation, Bill Haley said.

The community in 2004 got behind Emily after a thief stole a canister of donations for her operation from a Chesapeake sub shop. After media attention generated by the theft, the Emily’s Breath of Hope campaign raised more than $500,000 in just seven months.

The money raised through auctions, raffles and benefit concerts will now go toward the Children’s Organ Transplant Association to be used as matching funds for other operations.

“Our family can’t thank the community enough,” Grimes said. “They saw a little girl needed their help.”

Bill Haley wanted to ask one more thing of community members: to become organ donors.

Emily enjoyed being with her 12-year-old sister and twin 11-year-old sisters. Despite being diagnosed with cystic fibrosis, which made it difficult for her to breathe, Emily wanted to dance and play soccer like her sisters. And she did.

“She never wanted to let this keep her back,” Grimes said.



You know what to do.

Love from the Bubby

(notes: My brother, Bryan, wrote this for OSU's paper, The Lantern, a few years ago. And in the family, we call him "bubby." :))

Lung donor gives recipient a new lease on life
Bryan DeArdo
Issue date: 4/19/06 Section: Campus

Editor's Note: This is a personal story told by Bryan DeArdo, Lantern staff writer, about his family's struggle with Cystic Fibrosis. April is National Organ Donation Month. Bryan's sister, Emily, received a double-lung transplant in July 2005.

For most people dining at Easton's Bon Vie Restaurant two Sundays ago, it was just another typical weekend brunch. For the DeArdo family, however, this meal meant so much more.

My family gathered at this trendy French restaurant on April 9 not only to celebrate my sister Emily DeArdo's 24th birthday, but to also celebrate her new life.

This was the first birthday that Emily would have with her two new lungs. She received them via a double-transplant surgery July 11, 2005 at Children's Hospital. Emily was in need of new lungs because of a disease called Cystic Fibrosis.

Cystic Fibrosis is a genetic disease involving a sticky buildup of mucus in the lungs that makes breathing difficult and leads to infections. It might also cause pancreatic insufficiency that often causes digestive problems. It is a recessive disease that occurs only when a child inherits two mutated copies of the CF gene, or one CF gene from each parent. CF affects 30,000 Americans. The average life expectancy for someone with CF is 35 years.

When Emily was diagnosed with CF in 1993 at age 11, life as she knew it would never be the same. After her diagnosis, her typical day included several therapy sessions that used breathing machines. In addition, she had to take enzymes prior to anything she ate. During the course of the next 12 years, Emily also had to endure pneumonia and bouts of pancreatitis. She often spent many days, weeks and holidays at Children's Hospital.

Still, Emily continued to live life to its fullest. She made all-state choir during her senior year at Pickerington High School. In 2004, she graduated from Capital University with a bachelor's degree in political science and English. Emily graduated from college in four years even though she had incompletes in two semesters because of her illness. This included a life-threatening episode that put her in the intensive care unit in 2001. After graduation, Emily was hired to do communications work at the Ohio Statehouse.

By the summer of 2005, however, Emily's lungs had begun to give up. She could only use roughly 25 percent of her lung capacity. She was listed on the transplant waiting list in May 2005. For the DeArdo family, waiting was the hardest part.

"I was more nervous waiting for the call than during the actual operation," said Carmen DeArdo, my father. "It was very hard waiting, but the wait was worthwhile."

The call finally came on July 10 at 9:50 p.m. The call set off pandemonium throughout the house.

"I was excited, but I didn't want to get too excited in case it was a false alarm," said Michele DeArdo, my mother. "I went outside where it was quiet and sat on the front porch. We had the impression that the organ was coming from far away. I looked up at the dark, starry sky and realized that somewhere under this same sky, a family was experiencing something very traumatic and sad. I also knew that doctors, nurses and others were right then very busy working on this."

Despite my family's frantic reaction to the news, Emily remained cool.

"Once I got the call I was very calm and not worried at all because I knew that the surgery was the only way I'd get to have a life," she said.

After two more calls in the next two hours, my family set out to give Emily her dream. The surgery went under way at about 11 a.m. and went until late in the evening. The transplant was the first double-lung transplant surgery performed at Children's Hospital in Columbus. Afterward, Emily endured weeks of rehab before she was allowed to leave the hospital.

"Emily was perfect to be the first lung transplant recipient here (at Children's Hospital)," said Mark Galantowicz, the chief transplant surgeon who conducted the surgery. "She remained very positive during the recovery. Her internal strength and energy were very important."

In the months following the surgery, Emily has taken full advantage of her new life. She has moved into her own apartment, continued her work at the Statehouse and is in her church choir.

In August, Emily was awarded the Young Catholic Woman of the Year Award. She now is physically active and is organizing a 5 kilometer race for this summer.

"I now have the ability to pretty much do whatever I want without having to think about how much energy is required to do it," she said.

Those around Emily are still in awe of her transformation since her surgery.

"The biggest change is seeing Emily healthy and more independent," Carmen DeArdo said. "It is hard to describe how she has transformed from someone who could barely breathe to someone who just blew out 24 candles in one breath."

While enjoying her new life, Emily and her family remain grateful to the family that donated the lungs that made this all possible.

"Thank you seems so inadequate to express the indescribable gift my donor gave me," Emily said. "Without her family's generous decision, I wouldn't be here."

With April being National Organ Donation Awareness Month, my family is encouraging everyone to take the time to become donors. In the United States, 18 Americans die every day waiting for a donation, or one Ohioan per day. Nearly 89,000 Americans are on the donation list, including 2,285 people from Ohio alone.

"Organ donation is one of the simplest and most important decisions you can make," Emily said. "It only takes a few minutes, and the impact is incredible."

To become an organ donor, visit the local Bureau of Motor Vehicles, or go to the Ohio Organ Donor Registry online at bmu.ohio.gov/bmv.asp or donatelifeohio.org.

"There is nothing more valuable or precious than the gift of life," Carmen DeArdo said.

Me, me, me

From LOOP's site about the Donor Family Reception:

10th Quilt Unveiled at Donor Family Reception

The 10th quilt panel of the Lifeline of Ohio Donor Memorial Quilt, Services through Giving.

To kick off Donate Life Month 2008, Lifeline of Ohio unveiled the 10th panel of the Donor Memorial Quilt at the March 30 Donor Family Reception in Columbus. The unveiling marked the Quilt's 10th anniversary, honoring the individuals who gave the Gift of Life through organ and tissue donation. "Services through Giving" includes 24 uniquely handmade squares telling the stories of mothers, fathers, wives, husbands, sons, teenage daughters and others who are heroes to the lives they saved at the time of their deaths. Visit the Donor Memorial Quilts page for more information on the 10 panels.

More than 300 donor family members, representing 80 donors, attended the annual Reception. Highlights of the afternoon in addition to the quilt unveiling included a performance by double lung recipient Emily DeArdo, and other thankful recipients distributing gifts of gratitude to the families.


Apparently, I was a "highlight." :-D

Yeah, it's early/late

So if you can't tell, I can't sleep. Part of it is that my chest is really super bugging me. The other part is I hate the whole dr. office rigamarole. You think I would be used to it by now, but the thing with post-tx life is that I'm never quite sure where a doctor's appointment will take me. I just really don't want the staff to look at me like I'm nuts when I come in. Lately when I've had symptoms I go in, KNOW something is wrong with me, and then we get numbers, etc. and people look at me like I"m crazy.
What's the line between your gut feeling and hard data? What if the data says one thing, but in your heart you KNOW another? I know something is going on that is not kosher. And yet, I'm paranoid that I'll go in tomorrow and everything will "read" fine.
So am I nuts? Or what?

The plan

Calling The Powers that Be at 8:00 tomorrow, which will probably lead to a trip to the Resort's clinics.
Oh. The. Joy.

Monday, April 14, 2008

Argh!

My lungs are hating me.
For the past fews days I've had a congested cough, but since I felt fine otherwise I sort of let it go (I know, I know, bad Emily).
Well, now I'm coughing pretty much once every few minutes and bringing up mucus plus (yes, sorry to be graphic). This is not good. It is also not good to hear things rattling around in the chest. Also getting chest pain and headache from all the massive coughing.
Not fun. No idea where this is going, either.

Friday, April 11, 2008

A dealbreaker?

I've never come across an organ donation situation like this: (From Carolyn Hax's WaPo Friday chat)

Organ donation quandary: Just found out my boyfriend, who I love and am thinking of a future with, is not an organ donor. He doesn't have any religious beliefs to speak of, but he said he would like to be buried whole.

I lost my lifelong best friend nearly a decade ago as she waited for an organ donation that never came. This issue is kind of important to me. Do I have the right to broach such an intensely personal decision with my boyfriend? How do I do I approach it without putting him on the defensive? I feel that I can talk with him about a lot of things, but I don't want to be unreasonable because I am so emotionally invested in the issue.

This isn't a dealbreaker for me, I don't think. But it is something I want to discuss with him.

Carolyn Hax: Absolutely you can raise this issue with him, and I hope you do. It is intensely personal, and you can start by acknowledging that--but it's also a public health issue. Explain that your experience gives you a different perspective, and ask him if he has considered the possibility that someone close to him might one day need an organ that never materializes. Or, that he himself might.

And if he did need one, and one became available, would he accept it? Or is it okay by him that other people aren't buried whole? Does he think it's morally consistent to live knowing this safety net is there and that he's willing to avail himself of it, but not contribute to it himself?

Then he can revisit his stance, while you revisit your deal-breakers.

_______________________


Of course, for me, it's a non-issue. Anyone I'm dating better be an organ donor!!!! :-D

Thursday, April 10, 2008

The Best Birthday

Yesterday was my 26th birthday, and it was the best birthday ever!

First of all, it was a beautiful day. If you know anything about Central Ohio in April, you know that early April, especially, is not known for beautiful days. In fact, most of my birthdays have been pretty gross (I was born during a blizzard, apparently). And if the weather's OK, then it's usually Good Friday or something, so I'm in church.Not that I don't love church, but when your birthday's on Good Friday, it sort of puts a downer on the whole day, you know?

So, it was a lovely day. I had lunch with one of my old friends, which was highly enjoyable, as we got to eat sitting on the High St. steps of the Statehouse, eating put food in the sun and enjoying the great day. sadly, I had session at 1:30 so we had to cut it short.

Then, the best part--Avenue Q with Cindy. It is, bar none, the funniest thing I have seen in my life. I laughed so hard, and I totally want to be Kate Monster (a 25 year old kindergarten teaching assistant who has a crush on Princeton, a 22 year old recent college graduate with "A B.A. in English."). I had so much fun at the show, and, during "The Money Song", Princeton came up to my seat and I got to check him out up close and personal. Cute guy, for someone with orange skin! (Yes, they are puppets.) After the show, I got to purchase one of my favorite things--an autographed show card!! I have a collection of them framed on my wall, which I have been collecting since I was in high school. Now Avenue Q can join the illustrious company of Phantom, Beauty and the Beast, the Lion King and Miss Saigon (I am still in the hunt for a Wicked one). Our seats, in the Palace Theater's mezz, were wonderful (thanks to ticket guru Dad!). This has become my second favorite show and "I can't wait to" see it again!

Of course, I have to thank my donor's family, because without their generosity, I never would have had such a great day. And I was so grateful for it...

New site!

LOOP has updated their website--go check it out!

Home to Avenue Q....

Before my review is up, here are some links:

Rod and the GOP Convention


This town isn't big enough for the two of us...


How do you get to be a Puppeteer? (This one talks about the casting of Carla Renata, who I saw last night)

Tuesday, April 08, 2008

Bon anniversaire pour moi!

OK, so the birthday isn't until tomorrow, but my book haul is AMAZING, so I thought I'd share!

Cindy & Co. gave me a Half Price books gift card, so I went and bought:
--The Pilgrim's Progress
--Robinson Crusoe
--Carmen and other stories
--Ben-Hur
--Ethan Frome
--Night and Day
--Jacob's Room
--Encore Provence


Mom and Dad bought me the following at Catholica on Saturday:
--B XVI, Way of the Cross,
--Ordinary Work, Extraordinary Grace, Scott Hahn
--Christ Our Joy: The theological vision of Pope Benedict SVI
--The Way of Perfection, St. Teresa of Avila



And then, tonight, I used my B&N giftcard to get:
--Shakespeare, by Peter Akroyd (I've been wanting to read this for years)
--The companion book to The Chronicles of Narnia: Prince Caspian


Whew....lots of reading!

Thursday, April 03, 2008

Bookshelf: Notre-Dame de Paris

(AKA: The Hunchback of Notre Dame)

continuing my quest to read as many classics as I can before I die, I recently finished The Hunchback of Notre-Dame (which wasn't Hugo's original title--since the book is mostly about Notre Dame itself, he called it Notre-Dame de Paris. Oh well). While most everyone is familiar with Quasimodo, the bell ringer of Notre Dame and charge of Archdeacon Claude Frollo, the novel itself has very little to do with the characters, as it does the Cathedral and Paris itself. The novel begins with the Festival of Fools, but instead of immediately introducing character, Hugo gives us a description of the Palais of Justice (when I get to Paris, I'm going to know these buildings intimately, thanks to Victor here). Like the much longer Les Miserables, Hugo has a knack for inserting sections of questionable relevance into his narratives.

If your only exposure to the book is through the Disney film you will be very much surprised by the way things actually happened. Some points:

--Djali is a girl
--Esmeralda married a poet/playwright to save his life.
--Esmeralda dies at the end of the novel, as does Quasimodo.
--Phoebus marries his fiancee, rather unwillingly. (And he's a jerk in the novel.)
--Frollo tries to murder Phoebus, but Esmeralda is blamed.
--The Festival of Fools takes place in a palace, and Quasimodo is crowned the "Pope" of fools.
--Quasimodo is deaf from the effects of the bells.
--Initially, he kidnaps Esmeralda, and only at the end of the book does he try to save her.
--The French King appears in the novel
--Quasimodo and Phoebus don't find the Court of Miracles; that's the poet at the beginning.
--Clopin is a thief, not a gypsy.
--Esmeralda is not born a gypsy, she was kidnapped as a child. Her mother figures into the story quite prominently at the end.
--Frollo has a younger brother.

Those are a few points off the top of my head. And obviously there are no singing gargoyles... (or grotesques).

The book itself is relatively good. Hugo does excellent characterizations and possesses a strong power of description. But the book gets bogged down in discussions of architecture and detracts from what could be a very well-paced story. Hugo is constantly noting what time of year it is, and it's a good thing, because without that the reader would have no idea how much time has passed. If you want an introduction to Hugo, this is easier and faster to read than Les Miz, but I think Les Miz is the better story.

People

Tomorrow I get to see my transplant coordinator, Karen, for the first time in at LEAST a year.
I am so excited. :)

Wednesday, April 02, 2008

follow up

After posting the below about Tricia, I realized that I was feeling, again, the way I had felt when I got my call: a sense of peace and that everything is going to be OK.

I had thought, before transplant, that I would be a wreck. In fact, I prepared Dr. G, the surgeon, and Karen, my coordinator, for that fact. They both promised me that I would be well-sedated, and, indeed, I was. I don't remember anything after I left my parents in pre-op (And I got to give props to them--they really held together. Totally. Now, maybe they didn't I just didn't know it, because my glasses were gone and everything was fuzzy, but I think they did a good job staying together in front of me). I was so calm that I managed to sleep before they finally came and got me round 7 am.

I was calm from the minute we got the call. I never thought it would be a dry run. Since we lived so close to the hospital, I was pretty sure I would only get called if it was a real 'go'. Since my lungs came from MN, Dr. G had to go bronch them, etc., but I still felt, when we got the call around 8:45 that Sunday, that I was going to get them, and that soon I'd be in surgery.

Even looking back I am amazed at my calm. I was a little jittery, but the excited kind of jittery, like you get before you go on a vacation. I tried to pack a bag, which was pretty fruitless. I tried to watch a movie. We prayed. But I didn't sleep until I was on 4AE in a very familiar room, and waiting for what I was sure was going to happen.

Pray, pray, pray!

Tricia is in the OR right now receiving the Gift of Life.


Pray, pray, pray!

Monday, March 31, 2008

More center, less barre

Tonight is the night that Julia, my ballet teacher, says we're moving to more center work, and less barre, since we're progressing.
Thoughts:
1) I am happy we are progressing. Go us!
2) Terrified at the thought of falling on my butt (even though this has never, actually, happened in class. Usually I just fall out of the step or position).

I'll let you know.

Sunday, March 30, 2008

Quick updates

OK so I thought I had the computer glitch fixed, and then when I went to write the massive book post, not so much!
So here are some quick notes:

Books I've read lately (with star ratings):

--Anita Diamant, The Red Tent: ****
--Jacquelyn Mitchard, The Breakdown Lane: ****
--Tracy Cheavlier, Burning Bright: ***

Reading now:

--Portrait of a Lady
--Notre-Dame de Paris

Watching:
--Michael Clayton: ****
--Enchanted! Whoohoo! ****
--The Tudors: Season 1: Awesome possum--**** so far. OK, yes, there are mucho historical liberties, but it is so much fun to watch, with excellent acting.
--Disney: Snow White, The Hunchback of Notre Dame

Jane stuff: Sense and Sensibility starts tonight on PBS--USA Today gave it four stars. Go watch it!

Easter was wonderful--great music, great time with family. Pics up soon, if the computer cooperates!

Today I sang at a LOOP Donor Family Recognition event. It was the first time I had ever sung and accompanied myself (via piano) so I was a little nervous. I sang Sarah McLachlan's "I Will Remember You", which went over well, and, Thank God, it was a simple arrangement. Again, if I get pics, I'll put them up (obviously I didn't take them when I was singing!)

Oh, and just a minor thing--Tricia may have lungs! Ha ha! YAY!

Saturday, March 29, 2008

Upcoming...

In the words of Lizzy, there is "So much to acquaint you with!"

New books, new movies....news in general. Whew.
And it's coming. I promise. Now that my computer is back and working, we'll have new things up very, very soon!

Thursday, March 27, 2008

How long is that list?

From today's Columbus Dispatch:

More than 98,000 names are on the list of people in the United States waiting for an organ transplant. But according to a recent Washington Post story, a third of those are inactive: They are ineligible to receive an organ.

Critics say the list is deceptive and makes the problem seem worse than it is. They have a point. The numbers are used by policymakers who decide donation rules and ways to increase donations, by potential donors to decide whether to donate and by potential recipients trying to gauge their chances of getting a transplant.

Providing an accurate list hardly would change the fact that the need for organ donations is huge. Subtracting the inactive patients leaves about 65,000 people on the list. And last year, nearly 7,000 Americans died waiting for a transplant. Obviously, the need is urgent.

The United Network for Organ Sharing, which runs the transplant system, says many of the inactive patients have encountered complications that seem likely to be ironed out, and they might be restored to eligibility.

Still, keeping inactive names on a list that gets so much publicity could cause people to question the integrity of the system. If they're fudging this, what else are they fudging?

The people who run the system need to remember that honesty is the best policy, along with accuracy and accountability.



From the WaPo:

A Survivor of the Waiting List

Wednesday, March 26, 2008; Page A18

The most important point in the March 22 front-page story "A Third of Patients on Transplant List Are Not Eligible" was this statement by Robert Higgins, president-elect of the United Network of Organ Sharing: "Whether it's 75,000 or 100,000, there are still far more people who need transplants than can get them. None of this changes the fact that there is a significant number of people who die waiting."

It nearly happened to me. On Nov. 27, 1990, I was placed on the waiting list for a heart transplant at George Washington University Medical Center. After a few months, my surgeon told my wife that "even if a heart became available today, he is too sick now for the operation." Fortunately, my health improved, and I was able to withstand the operation on March 31, 1991.

Readers of the article should understand that organ transplantation works. I know. I have had my transplanted heart for 17 years.

DAVID HOLLAR


So, some of my notes:

--I was "inactive" for a weekend once--when I went away to visit my grandparents in Pittsburgh for Memorial Day. It was my grandfather's 80th birthday, and I knew that it would probably be the last time I saw them before I had surgery. Even then, I knew things weren't going well for me. So, in order to enjoy the weekend, the clinic moved me to "inactive." That changed the day I got back.
--This seems to be a problem with mostly kidneys, although I know it can happen with other organs, too. Sometimes you're listed because, like me, you might be OK now, but you can get very sick, very fast. When I was in college I went from dancing with my fiance at a semi-formal to being in the PICU, barely alive, in about four days. My doctors were always concerned that that could happen again, and if it did, they wanted me to be in the position to receive a transplant.

I don't think this should give people cause to worry, since, like the Dispatch editorial says, the list is still huge. 19 People die every day waiting for organs they don't get. The need is still tremendous.