Monday, August 20, 2012

Stuff I'm going to do, hopefully, and a thank you, with some preaching on the side

Plan for the week....

Last week:
Tuesday: 53 push ups, 170 sit ups, 2x30 sec wall sits, 3x30 sec plank; 3x1600 - goal pace 9:00, actual 9:00, 8:58, 8:47. 800 RI, 6 miles total.
Wednesday: 192 sit ups, 60 push ups, 2x30sec plank, 2x30 sec wall sits, 10 min arms.
Friday: 1mi warm up, 2@10:00, 2@9:45, 1mi cool down. Actual: 10:51, 9:58, 9:59, 9:41, 9:40, 10:30.
Sunday: 10 miles hilly.

I totally forgot to do my third day of cross training! Oops.

This week:
Monday: Cross training
Tuesday: 7 miles, 1 easy, 1 @ 10:00, 1 easy, 1 @ 9:45, 1 easy, 1 @ 9:30, 1 easy
Wednesday: Into the Wild OC Trail Run! I am SUPER excited about this
Thursday: 6 miles, 10x400 (also SUPER EXCITED about this, I love 400's!)
Friday: Rest
Saturday: Cross training
Sunday: 8 miles

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The aftermath of The Steroid....
Uploaded from the Photobucket iPhone App

She's pretty unpleasant this week. Also, she's eating pepperoni non-stop. It's weird.



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Regarding Friday's video post....

First, thank you for all the kind thoughts. Honestly, before I posted it, I had a gchat conversation with someone, that kind of consisted of me cracking up at the video, and the hilariousness of it.

I really didn't intend for it to be sad, or whatever. I forget how NOT commonplace this is for most people.

Margot posted last week about being sad, and being cool with being sad.

This is kind of the thing, with me. I know I downplay a lot of this stuff - I get a lot of comments and emails about how "well" we handle things.

Really, I assure you, I have moments where I certainly DON'T handle things well. Sam posted last week, about hating autism. I know, it's like a no-brainer, of COURSE you hate autism. I hate cancer.

I don't want to put words in Sam's mouth, so just speaking from my perspective, it just becomes a part of your life, like going to the grocery store. It just IS. But sometimes, there's a bad day. Sometimes, I don't WANT to go to the uckfing grocery store. Sometimes, driving home, I melt down for a few minutes, with no catalyst - just because.

But overall, there's just not a ton I can do about it. So being sad, it just won't change anything, except then in ADDITION to the kid with cancer, I'd have a headache from crying. Not worth it.

What I CAN do, and hope I've done semi-successfully, is put a face to pediatric cancer.

A few weeks ago on Facebook I posted a link to an article about "chemobrain" in pediatric cancer patients.

I've bitched and complained about The Steroid over, and over, and over.

You guys, I complain about how unruly and unpleasant it makes my 5 year old, but just read about some of these actual, FOR REAL effects of the Dex:
  • Patients exposed to dexamethasone had lower vocabulary, reading, mathematics, verbal memory and cognitive flexibility results as well as poorer emotional regulation
  • they may be at risk for early-onset dementia and early aging decline
  • [Dexamethasone therapy] has impacted how well they respond to and regulate stress
  • association with the development of avascular necrosis of bone

The other treatment she received the day Friday's video was shot, was intrathecal methotrexate - this is delivered directly to her spinal fluid via lumbar puncture (the "procedure"). From that same article:
Children and adolescents suffer verbal learning and memory declines within 72 hours of receiving chemotherapy

It is unknown whether they recover from cognitive adverse effects
I'm not fundraising right now. I'm not angling for anything. But this stuff pisses me off, and apparently, the way I cope with being sad and angry is by trying to do things. Sam runs and starts a movement, Margot listens to Radiohead. I get fiesty about articles describing significant cognitive impacts.

None of these are right, or wrong, they just are.

I guess that's all I have. This isn't incredibly coherant, just some rambling.

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13 comments:

Runner Maybe said...

HUGS!!

Which we were closer - I bet my Evie and your Gabby would be crazy friends. Just in their love for pepperoni. :) My kid asked for a bagel with cream cheese and pepperoni on it in her lunch today. silly girls!

BabyWeightMyFatAss said...

When Sam posted about hating Autism I knew exactly what he felt. Been there, hate it to. Unfortunately in the community there is a great divide of posting things like that because of grown up Autie's who will say you hate your kid. No I don't hate my kid I don't like that Autism makes her whack her head a million times because she can't communicate. That's what I hate. I could go on and on but this is about each other's realities. We just deal sometimes and that's that. It's not great, it's not horrible, it is what it is.
Lot's of hugs. I wonder if the salt in the pepperoni is what she's craving?

Jane Smith said...
This comment has been removed by the author.
Karen said...

I don't know how our doses compare, but I was also given Dexamethasone.

I returned to college 2 months post treatment and was able to get extra test time and a quiet place to take exams. I had to take extra time in a VERY quiet environment to study well. But just as you've adjusted to life as a cancer mom, Gabby will adjust to how she learns new things. She doesn't have a choice and it will work out fine.

Occasionally, I still (8 yrs later) have trouble finding words while speaking if I'm tired or nervous. But the way I look at it, it sure is better than being dead.

(Just) Trying is for Little Girls said...

You have put a face on pediatric cancer, and you are a wonderful mom.
Big hugs.

Alene Gone Bad said...

Keep preaching and speaking, Heather...be LOUD. I keep thinking of that trite, stupid quote, "when life gives you lemons, make lemonade" and how much I want to punch any person in the face who says it. But in a way, life gave Gab pepper this week, and she's making pepperoni. (I'm ducking, in case you want to punch me in the face for saying that!)

Franki said...

You definitely put a face on pediatric cancer every time you write. And you put a face on the moms and families too. That is important stuff. Your genuineness about everything matters a lot.

chacha said...

Pepperoni... maybe she wants some spice in her life of something. That stuff has some kick to it. But def random.

So, the other stuff. I mean, what choice is there - possible cognitive issues or just succumb to the cancer? Obviously, you pick the former. But, regardless, it sucks. There really is no choice.

When I ran the Blood Bank 5k, a 19 yr old from Carlsbad got up to speak about having, I can't remember which cancer as a young child, but that it eventually required a bone marrow transplant (apparently standard treatments didn't work and the marrow thing her mom had to push for as "experimental" or "last chance/long shot" deal) and she needed lots of transfusions, thus why she was speaking at this event. But she is a healthy adult now in college. So, it was pretty awesome (and also tearful for me because she broke down up there at the podium) to see that she kicked it and is thriving.

Elizabeth said...

hugs. you continue to inspire me to keep up with TNT, cancer research and just “doing” more. thanks.

Lauren said...

This was wonderfully written. I totally get it.

Jennifer S. said...

Huge hugs to you and yours. I cannot imagine dealing with this.

Average Woman Runner said...

It just IS, but it's not right. I wish there was something I could do. I do appreciate you sharing so I can be more aware and hopefully can pitch in now & then...always welcome to ideas of things we can do.

Fruit Fly said...

If I were you I'd be pissed off and rambling, too. Sometimes just rambling or writing stuff out makes me feel better, so maybe that's also helpful for you, too!

Poor little thing. :(

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