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....

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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Courage is the discovery that you may not win, and trying when you know you can lose.

5K Goals

I know I just PR'ed a 5K a month ago, but I'm going to try again.
Goal A: 26:57 <-ambitious, and crazy
Goal B: PR (current PR 28:11)
Goal C: Don't puke or die

Goal A is an 8:40ish pace. I've certainly never attempted this pace for any length of time - I did 1600's, like, forever ago, and hit that, but I had a RI in between. Doesn't really count. I did run mile 10 of my 11 miler Sunday at goal pace, and didn't want to die OR puke, so I guess it could happen. We'll see. I know it's kind of a stretch, but might as well give it a shot - it's a great course, and my legs feel good and recovered.

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Have I ever mentioned that I am a gigantic Disney obsessed freak?

For years, I've been a member of a Disney message board - I am normally the type who researches crowd calendars and counts down to the 180-day mark so I can make my dining reservations. I plan out what Fast Passes to get when (which is moot now, since they changed the FP rules at WDW, zoinks). It gets pretty intense around me when Disney planning is happening.

Anyway, they have a forum on these message boards dedicated to Make a Wish trips, and tips for families with special medical needs, which of COURSE I've been obsessively reading since we started planning.

On this board, though, there's a group of people, who select families going on Wish trips, and throw a little (or a lot....) of extra Pixie Dust their way...

By way of....

We've been receiving and opening Mickey Mail for weeks, and man, how stinkin' blessed are we.

Gabby is pretty much FREAKING OUT EXCITED every.single.day. The H said he woke up to her counting down yesterday. She advised me as soon as I walked in after work that we only had NINE DAYS LEFT.

I'm guessing today we'll have only EIGHT DAYS LEFT.

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Speaking of Gab.... It's been awhile since I've talked about Gabby.

The truth is, there's nothing to report. She's happy, healthy, and a typical 5 yr old kid.

I guess that's kind of the best report of all.

She had to get stitches a few weeks ago, after a playground incident. Can't get much more normal than that, eh?

The stitches came pretty soon after her chemo doses were increased - chemo is dosed based on the child's weight, mostly, and how they're reacting to their current dosage. Her weigh in at the clinic bumped her up to the next threshold, and doses went up. Not a ton, but enough to mess with her counts for a few weeks.

Chemo, in general, lowers her counts - white blood cells, platlets, red blood cells. All those cells you need to heal when you get cut, right?

So, long story short, her chemo was increased, which led to counts dropping, which led to the creepy stitches being removed but her leg not totally healed, so it was kind of an open wound and puffy, and she got an extra med to prevent infection. More chemo, and an extra med.

Like dominos, man.

Because her counts have been low, she's going to clinic again on Tuesday to make sure her counts have rebounded, before we leave for her Make a Wish trip.

What does that mean, exactly?

If her counts are still low, they'll "just" lower her chemo for the week and give her a transfusion.

You know. No big deal. Just lower chemo and blood transfusions.

Anyway.

The point to all this rambling, is today is Tuesday. Already this week, I've had two of my employees in my office, in tears, about children in their family with cancer.

I'm a private person, and I don't share my personal life with work. My employees don't know about Gabby and her leukemia. I've been here almost a year, and one of them just last week asked if I had any kids. They had no reason to come to me expecting anything more than a manager approving their time off.

TWO people, TWO kids with cancer. In TWO days.

What the fuck.

I don't know. It pisses me off. I hope I was helpful to them, somehow. I know I was terrified the first few weeks... and it takes a LOT to worry me.

It pisses me off that I'm so blase about "just" changing the dose of chemo and giving her a blood transfusion. I mean. Those are kind of serious things, right? I don't know how I'd function if I reacted as if things like that are a big deal, but maybe I should. And how incredibly lucky are we? How did we get SO fortunate.

I don't know. I don't really have a point here. I'm just mad.

PFTW

Last week was pretty quiet around these parts. I was tired. That's all, really. No other excuses. Gabby has been staying up super late, I have to get up early for work, I was just exhausted. Oh well.

Tuseday: 5 miles, hills
Saturday: intended to do a trail run with the H, but Gab was up until almost 2 am. We woke up at 8:45. By then, it's too warm out. Oh well.
Sunday: 10 sucktastic miles. No, really. They sucked. All of them.

This week...
Monday: 5-ish recovery miles walk/jog at Balboa Peninsula
Wednesday: 400's that I skipped last week
Friday: Hilllllls. Again.
Sunday: The Richard Leary 6 hour challenge. I was originally going to attempt 15 miles. That was the plan, when I was going to run 13 yesterday. But I didn't. So... we'll see. I'll do at least 13. Maybe a couple more if I feel like it. Slow and easy. I have no time goals for this one.

Saturday I'm going to a memorial service for a lovely woman who was a teammate of mine on the PCRF VIP Training team in May. She battled cancer and lost. I am really, really tired of cancer.

I am not officially fundraising yet, but my fundraising site for PCRF is up and accepting donations - link HERE. You can also join Team Gabby either as a local runner/walker or a virtual participant. Link to our team page HERE.

And because this bummer of a post is pretty bleh, here's a random picture that I like.

And two more to balance out the pictures of my kids. I don't really know what is happening here... neither of them actually wear glasses.

A day in the life....

I mentioned the other day that Gabby had a 9 hour appointment on Tuesday.

This is kind of medical-y, and detailed, so feel free to skip down to the pictures (or skip down to Five for Friday, 'cause there's no running or cupcakes involved here).

Gabby has Acute Lymphoblastic Leukemia. There are 4 pieces of treatment for ALL - Induction (which included The Steroid), Consolidation, Delayed Intensification (which re-introdueced The Steroid), and Maintenance. We're in the midst of DI right now. Someone warned me, back in February, about DI - that Consolidation was okay, but then there's DI. And it pretty much sucks.

He was right.

Luckily, Gabby was not considered high-risk (nor was she low risk, but most kids aren't), so our experience with DI wasn't as bad as it could have been.

I try, really hard, to keep a balance between recognizing how serious her condition is - she looks okay, and acts okay, most days, so it's easy to forget sometimes - and trying to maintain her "kid-ness".

I'm very lucky, that she has a dad that was able and willing to stay home and take care of most doctor visits, and that I have a job willing to let me take whatever time off I need.

Gabby was scheduled for nine hours at the infusion center (OPI), to kick off the last half of DI.

When I saw that, I was sure it was an exaggeration. Positive. How is that even possible, really? Nine hours? No way.

The H planned on going by himself, but that sounded dumb, so I took the day off to go with them.

Every OPI visit starts with The Cream. It's just a numbing cream, and it works pretty fast, so in theory she doesn't feel anything when her port is accessed. Still, Gabby knows exactly what it means. The Cream means, her port is getting accessed. She doesn't really dig that.

One of Gab's new quirks, is that she's extra particular about what she's wearing. She likes to "accessorize" herself... and I'm guessing it's just a part of her trying to hold on to whatever control she can. All of these things happen TO her, and she can't stop them... but she can put on a headband, followed by a hat, followed by a hood.

....first kid in.

She knows the routine - she walks straight up to the reception desk for her bracelet, stamps our ticket for parking validation, waits, then off to check weight, height, and vitals...

(this is her favorite person at OPI - they have a routine down)

Her BP was pretty low, so double checking....

Off to the room, then port accessing time....

So, I've tested the cream, on my hand, and it does numb... but to be honest, I'm not sure how much of this she can feel. She certainly ACTS like it hurts, but I don't know how much it really does. It took me awhile to grasp what the port is, but here's a link that explains better than I could. Right after I took this, I had to hold down her legs. She tried to snag that needle straight out of the nurse's hand.

Then, the procedure room. Gab doesn't really dig the procedure room, either.

Today's procedure was a lumbar puncture, with intrathecal chemotherapy... basically, they inject chemo (methotrexate) into her spinal fluid to treat any leukemia cells hiding there. She's given some sedation, and we're kicked out.

Just enough time to run down to the pharmacy and drop off some new prescriptions.

She's pretty out of it when she first wakes up....

True, that happened.

All of that, by 9:45am.

After she rests, and wakes up a bit, we're sent back to our treatment area.

Turns out, it was true - nine.hours. One of the drugs - cyclophosphamide - she has to be thoroughly hydrated for. Nine hours included IV fluids, testing her urine, more hydration, more testing, more hydrating, more testing, before the chemo could even be administered... followed by MORE hydrating.

All that, for this...

Sat around. Watched TV. Tried to get her to play, but she was having none of it. Brought her chicken nuggets, which were a winner. Watched more movies. Sat around.

Lily, one of the therapy dogs, came for a visit....

.....last kid out.

We got to OPI at 7:50, and left at 5:15.

“I may not have gone where I intended to go, but I think I have ended up where I intended to be.”

Gabby had a clinic visit yesterday. It was nothing special, nothing interesting. She had some blood drawn, and she likes to help the nurse transfer her blood into these little tubes. She knows the green and purple have to be shaken.

The nurse paused, and asked how old she is. "She's so mature for four!"

I don't want my 4 year old to be... mature.

We got our road map for the next phase of chemo, that she starts next week. It's called "Delayed Intensification", and they're not really joking. It's pretty intense. She'll lose her hair again, but we expected that. The Steroid makes another appearance. I was googling some of the drugs that are being introduced, and found this gem amongst the descriptions of side-effects:

Due to these side effects and its red color, it has earned the nickname "red
devil" or "red death."

Really?

That's really our BEST CHOICE FOR TREATING LEUKEMIA IN A FOUR YEAR OLD CHILD?

I've been freaking out a little (in case you hadn't noticed...) about the half this weekend. Can I stick the pace I'd like to, for 13 miles? Seems so tough.

Probably less tough than giving your child an IV loaded with "red death".

In the end, my goal time is irrelevant.

We raised, you, me, this blog, over $2000 for Pediatric Cancer Research Foundation.

The team I'm on raised over $45,000.

That all goes to find better treatments. Treatments better than this.

You can still donate through this weekend, LINK HERE.

But you can make a difference in so many other ways, too.

Volunteer for an event. Volunteer for office work, for a local foundation or charity. Volunteer at a local children's hospital.

Kids are resilient. They're stronger than we think. They take their treatments, and they often don't say a word. They don't complain. They don't let it phase them.

But they shouldn't have to be strong. They shouldn't have to be mature. They should be... kids.

Anyway.

Enough preachy preachy.

A bunch of people are running this weekend - I know Little Fruit Fly and (Just) Trying are running Eugene, and Skinny Runner (and maybe Bro?!). Rad Runner and Canadian in Exile are hitting the OC Marathon. Once Upon A (L)ime and I are doing PCRF Cinco De Mayo Half (not together, she's way fast).

I know I've forgotten a bunch, but good luck everyone!

Three Things Thursday

1. I am a moron. I think, that I think if I *will* it to be warm and spring-like, that it suddenly will be. Which is how I end up walking out of my house in a tank top and skirt and sandals, and it's 50*. Dumb.

2. I do look cute and springy, though. And I love my shoes.

3. Gabby's chemo Monday seems to have been pretty rough on her this week. :(

Gald I didn't book that spring break trip.

TTT, I'm exhausted edition

1. Yesterday, I managed to drag myself out of bed at too effing early o'clock, and get to Mind/Body for Runners at 24 Hour. I love the class. I love the stretching - it's a mixture of yoga and pilates, for... runners. It's great. But it's. so. early. *yawn*

2. #1, previously known as my "good" child, has snapped. I think all the stress from the last several months has just caught up with her, and she's damn unpleasant. I'm trying really hard to be understanding, but balancing that with assuring her that disrespect and rudeness are not allowed, ever. It's exhausting. *yawn*

3. Last night I was scheduled for a round of the Suck Less Program. It was SO HARD last night, and I couldn't figure out why it was kicking my butt so hard. Then I added up how many crunches, push ups, and squats I did.

259 squats, 170 crunches, 113 pushups.

No wonder I was exhausted, head to toe. *Yawn*

Is anyone else having issues with Blogger?! It keeps unformatting my posts. Not cute for the exhausted mind!

March Rewind, and a whine

I'm a poet, you see how I made that rhyme?

So, March was interesting. I took a "rest" week following the Princess Half, and took another 10 days off due to The Ankle. Despite missing half of the month (!!), I ended up with 44 miles run, out of 71 scheduled.

But, the last two weeks of runs have been GOOD. I've felt great, and strong, and am getting a handle on this pacing business. I added some speed work and hill training, and rocked both. So, I'll take it.

I'm scheduled for 66.5 in April, which includes a week of taper before the PCRF Cinco De Mayo half on May 1.

Suck Less Program was AWESOME. I test out on Saturday, so I'll have an update next week on my progress, but... It's significant. :D Jess at Blonde Ponytail/ suggested a Suck Less Challenge - any takers? I'll organize for April starting Monday if there's interest!

Scheduled for 11 Suck Less Program workouts in March, and hit all 11.

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Anyone in OC or LA not already registered for the PCRF Cinco De Mayo half/5K, there's a fab deal on Plum District for half off of the 5K registration! Link HERE.

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And, anyone in OC/San Diego free this weekend, check out this run for a great cause... Operation Jack/Autism Awareness Day at the ACT! Today for Military Families 5k/10k. If you can't participate, consider donating! Link HERE.

**warning. whining ahead**

I posted earlier this week about my spring break plans. Or lack of. I checked with our case manager at the hospital to see what she thought of our plans (basically if they were approved), or if she had any suggestions.

And the list of things that she DENIED was like... never ending.

No beach. No ocean. No camping. No Yosemite. No Sequoia. No boats. No Catalina.

Our basic rule of thumb is, we have to stay close, for hospital access.

I don't know why that didn't even occur to me. I mean, what would I even do if Gab had a fever and we're hanging out in the middle of the giant trees?

Then I felt like the crappiest parent EVER. I mean, we were sent home with a BOOK on how to care for her, what to watch for. There's a list of things that we need to be aware of, that lead to immediate hospitalization. As much as I might like to, I can't just treck off with them to the middle of the woods for a weekend.

It's like I forgot what is happening.

She has leukemia. She doesn't have a cold. It's not going to get better because she had a couple of treatments. It's... leukemia.

And that point was drilled home yesterday following her clinic visit.

Her treatments this cycle were going to be progressively increased at each visit - provided her counts were high enough. And she's responded really well to everything so far.

Except this visit. This visit, her counts are a little low. She couldn't get the upped dosage. Her ANC (link HERE for explanation of what that is) went down, significantly.

I've been very careful to NOT compare her to other kids, to not freak out about what if's. I suppose that's very easy to do, when comparatively, her treatment has been smooth sailing, and she's responded astoundingly well to all of it. And it still mostly is, there's nothing super alarming going on, but... that tiny bump.

We're not out of the woods. We can't do whatever we want. Life's not... normal.

So. Looks like San Diego Zoo. As a day trip, 'cause... I refuse to pay full price for a hotel and don't want to risk Hotwiring something we can't use "in case".

Le Sigh.