Thursday, May 30, 2013

Regression Analysis

I'm doing Regression in my Statistics class. I was having a hard time grokking why that word was being used for that math process, so I looked it up in the text's glossary. It says something like:

REGRESSION
the functional relationship between correlated variables, often used to predict values.

See, no apparent "regressing" in that definition, right? No "going backward." That's how most people talk about it, right? Weird.

So I looked it up elsewhere and got lost in the layers. In Parentlandia, "Regression" is child development lingo.

REGRESSION
backsliding to an earlier development phase

That's something Aria has been doing since her treatment began...a little more baby talk, a little more helplessness. Sometimes cute and occasionally annoying, I don’t think much about it. She's my youngest. It means we I get a little babyhood time. Yay us. But then:

------------

Scene: Kinderhook Tap. Friday afternoon. We need a drink. Exclamation marks are everywhere.

Me:            Steigl Radeler with Vodka, please !
Barbara:     Chocolate martini !
Bartender:  Here you go, ladies !
Barbara:     Yay, Friday !
Me:            Look, my glass is 14-inches tall !
Barbara:     Mmmmmmmmmh, chocolate !

Kevin (via text):  Aria has a 103.4 fever, has had two accidents. 
                            Shivering, clutching her skull. Yelling
                            "i'm soooo cold" and "my head hurts" 

Me:         On a scale from 1-to-Damned-to-Hell, how wrong would it be to gulp 
                down this drink before I snatch my kindergartener from school so I can rush 
                my preschooler to the hospital?

Barbara:    I'm not sure. It's a skinny glass. Hard to chug.
Bartender: Damned either way.

All week long, I'd bitched about utter bullshit: Job frustrations and familial annoyances. School disillusionment and sketchy aspirations. Parenting. 

Just 9 weeks after my kid's cancer diagnosis, I'd already shed the confines of "what's really important" and immersed myself once more in worries of faulty appliances and whether we spend too much on takeout.  Regression, mommy style.

Nothing like a quick trip to the hospital with your baby to slap the regression right out of me.

Three hours later, in our hospital room, Aria was Perfectly Fine. But we had to stay 48 hours so the lab could culture her innards and figure out what caused all this mayhem. 

My research has confirmed my parental cancer cycle: is Fear -> Frustration -> Fuck It All.

By bedtime, Aria and I were cozied up in her hospital bed, giggling and more peas/pod than we’d been all week.

And I was back to wondering what my problem is when I’m “on the outside.”  When I'm back in real world, without cancer causing havoc at any given moment.

If I were a convict, I’d be the model prisoner. I'd be getting my PhD and preaching Buddhist wisdom to my fellow inmates. But later, I’d be the parolee who keeps breaking the rules so she could get sent back to the Big House. 

It’s seems so much simpler behind bars.

REGRESSION
a trend or shift toward a lower or less perfect state

Going back to the beginning, the first week following Aria’s diagnosis, we had four really crappy weeks.

And then: calm.

For 8 weeks now, we've been so lucky. Her white count’s been unstoppable, so she could go to the park and have playdates. We ate at outdoor cafes and risked grocery store germs. Big deal stuff for a kid who had to give up school, gymnastics, dance, and just about everything else.

She’s been adorable, not pissed off at the world. Her hair has become dull and wiry, but remains firmly attached to her head.

None of the dreaded mouth sores. No barfing. 

In this phase, her chemo appointments are 10 days instead of every 7. Whoohoo, right? Not so much. This phase is called "Escalation." 

ESCALATION
to increase in extent, volume, number, amount, intensity, or scope

It is a phase well-named. Every 10 days, they jack up the poison to see “how much can she stand?”

The answer to that question was clear this week, as the barf hit my espadrilles, the car seat, her dress (oh no, my byooooootiful dress!) and kitchen floor. Another clue has been her new diet of grapes and No-Thanks-I’m-Not-Hungry.

Today, Escalation also announced itself in her blood tests. Not all that long ago, I blathered excitedly about her being (almost) “no-risk” when measuring how likely is she to disintegrate if someone sneezes nearby.

Today’s CBC report moved her from “Not bloody likely to disintegrate”
directly past “Avoid crowds of slime-covered children and rodents”
and straight into “Do not breathe near others.”

I’ve been telling the girls that Aria “probably can’t go to Lyric’s birthday party” while still believing she absolutely would be able to go. She’d been doing soooooo well.

But she’s due to be back in the bubble by next week.

And speaking of bubbles, Aria can’t go to Lyric’s birthday party, and that just really, really burst mine.

REGRESSION
a trend or shift toward a lower or less perfect state

And so, we regress.





Tuesday, May 7, 2013

What a great party! (Or, OMFG, stop touching!)

3PM

What I see is half a dozen birthday princesses, filing into my living room. They bop about a giant pink buttercream castle, all sweeter than you'd even expect.
then I hear this "Hi, Ariaaaaaa! Kiss me! Hug you! Want to touch my nasal cavity!"
so I think... God she's missed this so much. Why can't...oh, God, deadly bacteria. Stop touching them! OK, don't say that, touching is fine. No, no, no, oh christ. Too late, they touched her face. It's fine. She's fine. I'm...ok, did you just wipe something on her? Fuck.
but what I say is "Lyric, you're going to knock over the cake!"
then I want... three Guinness.
But what I drink is air.

3:30

What I see is my "sick" preschooler trying desperately, futilely, to blow out a single candle.
then I hear this "Happy BIRTHday dear Aria, happy BIRTHday to you!"
so I think... "Awesome, now blow out the candle. Try again, sweetie. Wait, no, blow it OUT. OK, you WILL blow out this fucking candle because I really can't remember this as you being able to blow out the candle. Not that this is about me, of course. It's about you. And you ran a mile yesterday, and you're four! You will blow out the candle. Oh fuck, how long have I been willing you to blow out the candle? How long have we all been standing here waiting for you to blow out the candle? Have I moved you too close? Am I about to light you on fire? I'm in-fucking-sane and going to sob. Right here, right now. 
but what I say is "Hooray! You did it!"
then I want... scotch.
But what I drink is a sip of some shitty rose' I bought at Trader Joe's.

4PM

What I see is my daughter in her Rapunzel dress, wandering about outside like a normal preschooler who can do that sort of thing, running away with some sort of snack in her hand.
so I think... that's great! Wheehee! This party wasn't a mistake! I'm talking to fun people, my kids are wandering around with their friends, art is being made, snacks are eaten, libations are sipped.
then I hear this "Kari, what can she eat now? I only ask because she's eating a strawberry, and I remember you'd said..."
but what I say is "Oh! Oh. Well, ok. I guess it's fine. I mean, what can you do. I wasn't going to let her...oh, well. Too late now."
then I want... to run after her and rip the remaining square millimeter of poisonous berry from her fingers.
But what I drink is an only barely not crappy white sparkling wine thing from Trader Joe's.

4:30

What I see is tiny girls with butterfly facepaint milling about, mostly in tangents, occasionally connecting.
so I think... God, I just want her to do this every single day. I want her with her friends. I want her milling about. I want her making connections, or moving in tangents, whatever. It can't just be me everyday. And god, what am I going to do about her sister...I know she needs more at school than she's going to get. I can't afford that. I shouldn't have started grad school again. I will never get my business off the ground.
then I hear this "Mommy. It SEEMS like Aria is getting all the attention and I don't get any. AND my jewel fell off my crown. AND Abigail and Charlotte are laughing at me and not letting me have any water."
but what I say is "LYRIC, THEY ARE THREE YEARS OLD. HOWZ ABOUT YOU FIND A WAY TO DEAL WITH IT?!"
then I want... red, red red wine and to only ever have to parent one child at a time.
But what I drink is the kids' pink lemonade poured into that white sparkling wine thing. But it's just not quite hitting the spot I need.

Thursday, May 2, 2013

Pep talk. Eulogy. Pep talk? Eulogy.

I do not expect others to know what to say to me, Kevin, or to Aria or Lyric.

Some think I've been too forgiving of others who don't call at all, or who say something pretty ridiculous. But I've been there. I've said the stupid thing or been too nervous to call.

I don't hold anyone accountable for saying something that's not exactly right. Sure I might make fun of the person, the phrase or the moment. I might even feel momentarily shitty, morose or depressed.

But I don't expect anyone to be perfectly articulate about death, disease, and childhood all in the same conversation. Well meaning is good enough.

(P.S. Can't talk about it? It's cool. Send a note, a card, or a box of wine.)

Even so, this is so poignantly written, I can't save it just for my FB feed: http://www.salon.com/2013/05/02/the_ultimate_cancer_taboo_sometimes_it_kills_you/



If I had a dollar for every time....

If I had $1 for every time someone read this blog, I'd have $5,000 to give to children's cancer research already. No kidding.

But don't give me your dollar. Click this link, and give it to the Children's Cancer Research Fund. 

Then, feel good inside.

I have 40 posts on my blog. Half of them had to be worth reading, right?

I thought so. 


There's only two days 'til this event, and you know you'll forget if you don't do it now. 

Plus you get to see your name on the Good Person list on this webpage.

<-and i="" post="" promise="" span="" to=""> more ridiculous pictures like this.




Wednesday, May 1, 2013

Pity, Realization, Motivation, Movement.

When Aria was born in 2009, my best friend's 5-year-old nephew died of leukemia.

I followed the blog, I donated a bit to whichever fund the parents selected, I felt extremely sorry for them, and I felt lucky to have healthy babies.

My same friend's brother died of brain cancer, too. So did her childhood friend. She's had more than enough of this shit for several lifetimes.

Yet, except for being secretly terrified of cancer, I didn't go out of my way to do much about it. I heard "cure" and "cancer" and thought it improbable. There were more practical, hopeful causes to which I could donate.

Sound Effect

Several weeks ago, Aria was diagnosed with leukemia. It's the more "curable" form of childhood cancer. It's only curable because science has made it so.

Maybe cancer hasn't touched you directly, but if you reach out further, look one more degree out, you'll  see it lurking, waiting to be noticed.

I am able to perceive Aria's cancer  as something new for us to work around (or through), and not as a death sentence. That's only possible because of so many who came before me who didn't think a cure improbable. They put their time, money, and effort behind a cure.

I hadn't even thought about how my aunt survived stage 3 cancer  a decade ago. Only one way that happened: Money -> Research -> Cure.

Now it's my turn. I've never fundraised for anything. A few girl scout cookies here or a carthwheel-a-thon there, but never any real effort.

But in the coming months (like, the next 60 to 600 of them), prepare to be entertained frequently with my creative energy, social extravaganzas, and sparkling wit in exchange for donations to Children's Cancer Research Fund. I'm trying to decide how much to raise...but $100,000 sounds about right.

You'll be invited to block parties, beer tastings, and no-chip-manicure sessions. You'll be compelled to buy your Christmas Cards from the assortment designed by my 1st grader. Anything you might have spent money on anyway, you'll spend money on in a much more meaningful way.

You'll love having so much fun for such a great cause. If you believe in heaven, I'll be the one to put you one step closer. If you just want to feel awesome, consider it done.

Stay tuned. Keep your schedule open. Be a part of something big, important, fulfilling, and bone-chilling.

To get the fundraising ball rolling, my uncle is running 26.2 miles in Wisconsin in honor of my little Aria Luna.

Click that link. Try a small monthly donation...it will feel like magic when you see your bank statement. Save your receipt to get that tax write-off.

Make it worth the while of every little kid whose mom was just told their baby has cancer, and gosh, sorry, but it's not the kind we've figured out how to fix yet.

Yet.