September 21, 2007 - part 1

Happy Birthday to Me!
Happy Birthday to Me!
Happy Birthday, I'm 40 and decrepid....
Happy Birthday to me........................

Hello there, tubby-watchers! I will be posting twice today - because I was too stinking sleepy last night to do the Sept 20th post. So, this will be a backtrack blog - and a birthday plea!

Thursday, Sept 20.
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**First - Avalon update. Feel free to skip ahead - if you're only here for my sugar-deprived rantings...**

Avalon had clinic today - and I had a wow-I-can't-believe-I-dorked-that doctor's appointment to make up - so we were at Children's Hospital from 10:30 am until 4:30 pm. Ugh.

Clinic was OK. The neuro-optho had ordered so much bloodwork, that they actually took out more blood that they would give her in a transfusion. In three years, its the first time she's mentioned "I can kind of feel the blood you're taking..." She actually got a smidge woozey. Little bit of juice, and she was good to go. Of course, could they have apple juice? Oh no - had to be grape juice...dark purple permanence just waiting to hit her rainbow-embroidered white shirt (incapable of being bleached...). She thought I was a loon treating the juice like toxic waste. She doesn't do the laundry.

As for tackling Avalon's CSF issues, its the first time I've ever felt "bumped" at our clinic. Our attending seemed to have little to offer and is bumping the referral process back to the neuro-optho. The neuro-optho had sent her referral request with me, because I have always said how helpful our clinic is. Neat. Now I get to crawl back to her - and beg her to jump the hoops. Not to mention, she's not a "Children's" doctor - everything moves more slowly coming from her. Our attending's one concern was proceeding slowly - not subjecting Avalon to loads of testing - which might ultimately not show anything. While I completely agree with that, the fact is, all the neuro-optho is asking is for a physical/rehab doctor to evaluate her muscle function - looking for indicators of auto-immune disease - to explain the de-mylenating process going on. We have more hints that things are not going well...this is the second month in a row, and people 3 and 4 who have not been able to find any reflexes in Avalon. Two months ago, she still had reflexes. Last month..none. Monday - none. Today, none in any joints, with two doctors trying. Something has to be up.

The mountains of bloodwork they leached her for - were so extensive, that several of the tests aren't even performed at our hospital. The blood has to be sent out-of-state. Wonder how long that will take? Heck, the lab had never even heard of one of the tests...our doctor had to interpret it for them. Sadly, the blood for the difficult test had been put into the wrong type of vial. That meant they had to re-draw Avalon. Since it was too much for a finger stick - we had to re-access her port and take it that way. My kiddo is a trooper! She and her "bestest bud" sissy - went tromping back to the infusion room, had her blood taken, and came out victorious - all without me! I just got the I-don't-need-you-I'm-big hand. Too funny! Of course, the nurses thought they were amazing...so the two appeared with beanie babies and pretty hats as a reward. You've never seen bigger smiles...

Then, there's my you-have-to-be-kidding screw up. Wednesday, I was supposed to be in a meeting with Avalon's neuro-psychologist - to go over her test results. Would you like to ask me what I was doing? Hmmm, can you guess I wasn't sitting next to him? Yep. I was sitting next to a 6 year old, in front of her school computer, discussing differences in your body from the time you are a baby until you're six. Talk about your dork-up. When the doctor called - I wanted to crawl under my seat. Here I am, 40 (ack - that hurts to write!) and I "lost my homework" so to speak. I was mortified.

Thankfully, Dr. Glazier has a wonderful sense of humor - and couldn't have been kinder about it. He even gently teased me today when he graciously agreed to see me after clinic. The good news is, he actually gave me good news! Wahooooo! I threatened to kiss him for being the only medico in recent months to give me good news. I probably should have followed through on my threat...he's young and cute. The only "bad" news wasn't really bad - just affirming. The tests showed a loss of speed/motor function with Avalon's right hand. She is definitely right hand preferential - but it doesn't work right. Perfectly in line with Left frontal brain damage that we've been suspicious of. So - not really bad - just more evidence to get us in to see the latest set of docs we need to see.

So - other than being embarrassed by my own stress-fueled shortcomings - it was a pretty good hospital day!
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OK, on to a few Fat-A-Thon ravings.

I did OK today. Not great...OK. I didn't have time to make breakfast as I ran around tossing children into clothes and scrambling to find the list of bloodwork Avalon needed. In my less-than-composed life this week, I had lost the stupid piece of paper. As I single-handedly destroyed my bedroom and half the house searching for it...making my smelly onion eggs somehow got lost. Probably wasn't a bad thing...at least I didn't have dragon breath for the 6 hour hospital tour.

By lunch, I was ready to start sucking IV's I was so hungry. (for those "in the know", I was going to say ready to suck TPN, but most people would wonder why I wanted to lick a television network...) Thankfully, some brilliant human installed a "good" food court in the basement of our hospital. Its the overly priced cousin to the regular cafeteria - but at least the food is actually tasty. While I watched my short people eat what could possibly be the best looking chicken tenders ever, I did manage to stay healthy and eat a huge chef salad. And...I only used one of the dressing pkts. (a whopping 180 calories! Ack!)

Here's the problem. By the time we got home, I was pooped. Pooped, up-to-my-eyeballs in my to-do list, and in a pre-birthday funk. I didn't manage to carve time to eat until about 10pm. Yeah, yeah, I know I should have just sucked it up and gone to bed...but then I could hear the diet gurus screaming in my ears about "needing to eat enough" blah blah blah. OK, so maybe they weren't actually screaming...at least they were a good excuse. I ate a healthy, small taco salad - right on track, no issues. That is, until my own onion breath nearly asphyxiated me. I gotta admit...I have been one dragon-breathed dieter these past two weeks. I am downright disgusting! Onions, pepper, garlic...they make boring taste better...but at a nasty price. What in the Hades is it going to matter if I'm thin and sexy...if my hubby can't stand to be in the same zipcode with my breath?!

Anyway, I was doing well, until I stunk myself out. Then, I had the unfortunate memory that I had a multi-pack of peppermint lifesavers stashed in a cupboard. Up until now, they've been totally safe. I loathe peppermint. Heck - I'm equal opportunity - I despise anything remotely mint. Ah so...that is, until you make me a carb-crazed lunatic. I innocently brought a few packs of lifesavers upstairs with me. My thought was to be kind to my 6 year old, and have lifesavers handy for school hours - so she doesn't have to smell my "icky breath". Nice thought - if you're not a 244 lb glutton! (yes, you read that right...I've lost 14 pounds!) I sat here, reading emails, and ate two entire rolls of peppermint lifesavers. I've decided, I'm now officially brain-damaged. Dieting has apparently destroyed all common sense and good taste - I ate mint. Lots of it. Bleck.

So, for most of the day - I was perfectly respectable. I ate rabbit food sprinkled with fair amounts of protein, and even drank some water to wash down my Diet Coke. I didn't cave to the fried wonderland that beckoned me in the food court. I didn't worship at the alter of the vending machine - even though it sang my name. No no - I suffered like any respectable dieter should...until. Until the siren song of the carbs led me down the path of destruction...to mints. Lots and lots of mints. Yuck.

Face it, its amazing how far you will go when you're desperate. Mints. What the heck was I thinking?!
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Final thoughts: Its my Birthday! Yahoo! (no, this is blogspot...maybe I should have said Bloghoo!) How about sending me a birthday wish...so I know more than two people are reading this? You can comment on this post, email me at alicia@crazycancermom.com or best of all - send in a pledge for the Fat-A-Thon. I'm dong all of this to remind you how much cancer kids need you. My bestest best birthday wish would be to learn that someone I don't know is reading this, and thinking a bit about our kids.

Thanks!!!!

LOVE from an officially OVER THE HILL Crazy Cancer Mom - Alicia
www.crazycancermom.com