September 13, 2007

So, it turns out, stress may be a bit of a food cue for me. Not that I didn't kind of *know it* before...but today it kind of jumped up and whacked me upside the head. My epiphanal ego says, "Yay! I'm so smart, I've recognized a huge issue!" My throbbing skull says, "Man, I wish the ego wasn't so dense that I have to get walloped so hard." And my rear says, "Damn. I bet I just found a few of those pounds I lost."

As of this morning, I nearly fell off of the scale when it read 246 pounds. (*If you happen to be tuning in late...that would be 246 pounds DOWN from 258 pounds, a mere 13 days ago.*) If you gathered the convoluted confession from the preceding paragraph, you may be surmising that my "net losses" may have been affected today.

Today was a long-anticipated and dreaded medical benchmark for my daughter. I suppose its about time I ante up some basic info about her. The beautiful little baldy you see covering most pages on www.crazycancermom.com is my own baldy, Avalon. Avalon (or daughter #3 as I usually call her here) was diagnosed with Acute Lymphocytic Leukemia when she was 17 months old. She is currently in long term remission and has been off of chemotherapy since Dec 2006.

As a result of chemo, Avalon has been left with osteoporosis, painful, grinding joints, and brain damage. Avalon has a condition called intercranial hypertension (IH), or pseudotumor cerebri (PTC). The English translation is that she has too much spinal fluid surrounding her brain, spinal cord, and optic nerves. In fact, she has been recorded at having nearly 4 times more than the average adult. Skipping forward through years of symptoms, months of treatments, and 3 dozen trips to the OR - I'll do my best to shorthand for you.

Avalon has had a surgery to put holes in the covering of her optic nerve to allow fluid to leak out - thus reducing pressure on the optic nerve and hopefully saving her vision. Avalon now has a V-P (ventricular-peritoneal) shunt that has a tube that runs into the center of her brain to drain fluid through a resevoir and tubing to eventually dump the excess fluid into her abdomen. Avalon's shunt is what they call a "smart" shunt. We can change how much fluid it sends out by holding up a remote control behind her ear. Its pretty cool - she's actually a remote-controlled robot! (although she steadfastly refuses to make bee bop boop beep sounds for me! Killjoy)

Whew! You're almost caught up. The mystery of Avalon's PTC is that no one knew what was damaged, the mechanism that drains the fluid - or the one that decides how much to produce in the first place. I believe we have probably reached the conclusion that its her production center. Every time we give the fluid more room to leave, her brain seems to catch up by making more. Its a lose-lose proposition.

Six weeks ago, we discovered that she was, again, losing vision and that her pressure was up. We opened the shunt further and have been waiting. Today was the follow-up lumbar puncture (LP) to see what effect we had. What I haven't been telling you is that the past week as I've been jumping one diet hurdle after another...I've actually been leaping a giant chasm. As today got closer, my stress has been increasing rather exponentially. My hubby, my sister, and a close friend were all right. They all counseled me to stop focusing, stop worrying - we'll deal with it and move forward. No sense borrowing trouble. But...from a dieting perspective, it was rather like having God's biggest Hershey bar outside my window, screaming my name. The higher the level of stress, the louder Hershey yells. Its a viscious cycle.

Moving into the present, we had the LP today. For Avalon, LP's mean a long, torturous, hungry day. The procedure is done under general anesthesia, so she has to go without food after midnight, the night before. Our house rule is that anyone going to the hospital on procedure days, also goes without food until she can have it. (baby was exempted from that!) A) its downright inhumane to eat in front of a hungry short person, and B) it makes anyone with her, appreciate how she is feeling. While this all sounds noble and such, it did make for a rather cranky bunch o' kids today - since I got stuck taking all of them.

Long story short, (well, that ship appears to have already sailed...) the results were not as good as we would have wanted. Yes, her pressure is better, but its still twice normal. The problem is, we're running her shunt at nearly full capacity already. It may not be possible to outdistance the brain with just the shunt and the previous eye surgery. From here, the options get...interesting. (I'll leave it at that, for now) The news wasn't horrible, just disappointing. And now part two of the wait begins. We see her neuro-opthalmologist on Monday. What we find there, will be the true deciding factor. So my stress-fest will have to trudge on through the weekend.

Post surgery, we took our morphine-goofy, hungry-bunny to a lobby of the hospital where they were broadcasting a fundraising radiothon. We've participated in this radio-thon in years past, and only missed being interviewed this time because I forgot to return the phone call. So, we went to see if we could help out, visit our hospital friends, and bribe my brood with some catered goodies.

At the radio event, I was able to relax a bit and enjoy good conversation and warm smiles from wonderful employees that have long since crossed over to "friends". I even managed to eat healthy, choosing just one spinach chicken wrap. A wrap, by the way, that was so stinking good-for-me AND tasty that I nearly was convinced I had nodded off and dreamed the whole thing... At the event, I fed my woozy 4 year old ooey gooey brownies and chips (she gets anything she wants for her first "meal" post-op), all without a second thought to tasting them myself. And then...I came home.

Right about now you're thinking, "What in the Sam-hill does any of this have to do with dieting? And geez, I thought this Blubber Blog was supposed to be funny?" Well, the BB is usually going to be humorous - I am usually pretty light-hearted. Its a darn sight easier to laugh about life than drown in the serious. (see Bruhnhilda's Blog of Absurdity) But, I would rather keep the BB honest than fakely funny - so today...maybe its a bit more real than real funny.

Don't get me wrong, our day at the hospital was one giant grin. We LOVE the wonderful, giving, warm, loving, supportive, amazing humans that work in our hospital. We laugh, hug, tease, and enjoy the time we share with them. It may sound rather insane, but a hospital day is not a negative event for our family. We enjoy "catching up" with the friends we've made along the way. I think that's the interesting thing I learned today - I wasn't even interested in the "bad stuff" while I was standing there facing piles of gourmet cookies, pans of brownies or the chip buffet. As long as I was distracted and laughing, I could have cared less.

It was the fateful drive home that gave me time to really start *thinking* about what could potentially be coming...that I began to unravel. Am I a teary, bleary mess? No. We've handled far worse. However, did I over eat in the comfort of my own 4 walls? Oh yeah. Uh-huh. Affirmative. Yep-a-roonie. Guilty as charged.

The good news is, I must be making some sort of mental progress, I didn't exactly "pig out" to even a fraction of the extent I would have 3 weeks ago. Days past, I would have finished off the container of brownies still in my cupboard, followed by probably ordering pizza for dinner. I did manage to rein myself in to two 1 inch squares of the dreaded brownies. However, to chase away my Brownie Blues, I chased my sensible portion, with a bowl of cereal. OK, so the cereal was organic, and was mostly oats. It also has a good amount of wheat - which can be entirely responsible for sinking my dieting battleship. Then there was my dinner... a giant bowl of butter-dripping popcorn. Since the battleship was already gone - I went ahead and sunk the coast guard's boat too...

After recovering from my naval assault, I realized how I'd been seeking my ammo with no thought to what it would do to my body. I was only looking for how things would taste. That's about the time I had my great epiphany that stress really does make me do things. Here I thought I was so highly evolved and junk. Hah! I'm a complete simpleton. When it comes to why I eat what I eat and when, I've barely been surviving at amoeba level. Wow. Who knew?

I guess what I'm trying to share, is that I think I bumped up an evolutionary notch, or two, to at least paramecium today. I have finally recognized that no matter how much in control I think I am...there are times I completely surrender to the call of the sirens, the stress sirens. For today, I figure I may have surrendered a pound or two to them. The trick is to find my earplugs. I need to learn to ignore that call and divert my attention. Hopefully, finally knowing there is a call, will be a giant step toward immunity to it. I don't really know, I'm just musing and sharing...honestly.

Ack, this open heart, open life stuff can totally blow some days.

To keep you all from thinking I've gone totally serious on you...I'm posting my first tidbit on Bruhnhilda's Blog of Absurdity. Click on the link in the Links section upper right hand corner of the page, it will take you there. For my ALL-list, my local friends and family - you will recognize the story. For everyone else, this started as an email to a few people, and has morphed into the BBOA. Salute my on-line friends! You are keeping me sane.

- Alicia - the crazy cancer mom!