Tuesday, September 18, 2007

September 17 - evening

I'm baaack! I figured it was easiest to divide this day into two parts - A) Before the big doctor's appointment, and B) After the big appt. Welcome to part B) The After. (see previous post for description of the weekend and what led up to this)

Today was a re-check with Avalon's neuro-opthalmologist. This appointment is the reason Avalon had the LP (lumbar puncture) on Thursday Sept 13. I wanted the neuro-optho to know exactly what Avalon's spinal pressure was when she looked at her eyes - no guessing this time.

The good news - Avalon's eyes are fantastic! The doctor said they look better than she ever thought they could. Wahoo! The better news is that it appears we have finally "beaten" the brain at the fluid game. We have finally reached a point with the shunt that its keeping up with the brain enough to allow her optic nerves to return to normal. Double wahoo! Bad news - the protein in the CSF could be as bad as I feared. Quadruple Boo Hoo...

As I wrote previously, normal protein levels in CSF are 14-45, Avalon had 89. High protein can indicate shunt infection (Avalon has a shunt in her brain), de-mylenation of nerves (think like in MS), auto-immune disease, and a few other ickies. Protein in CSF makes the CSF like "sludge" - very thick. If the protein level gets too high, it can clog her shunt - causing shunt failure (which can quickly kill her). So, the neuro-optho is not happy and being very pro-active. The neuro-optho thinks that Avalon's protein is from inflammation. Most probably, because Avalon's body is "angry" that it has a foreign object in it. The other most likely thing is that Avalon may have developed an auto-immune disorder. (EX: rheumatoid arthritis, lupus, etc).

For now, the neuro-optho has ordered an enormous bloodpanel to look for blood indicators of generalized inflammation - and to look for indicators of pretty much any auto-immune disease she could dream up. She ordered tests for several diseases that "only adults" are supposed to be able to get - because Avalon's pseudo-tumor is supposed to be only in adults too. Best case scenario: no evidence of auto-immune disease, positive presence of inflammation indicators in blood, and we treat with low doses of non-steroidal anti-inflammatory drugs (Dapsone). Worst case #1: auto-immune disease and we have a whole new batch of crud to deal with. Worst case #2: her body is rejecting the shunt - and she would have to go on anti-rejection meds like a transplant patient.

Craziest part? We can't test to see what's going on in the CSF. Each LP"stirs up" the CSF. Any trauma from the LP can introduce blood into the spinal fluid, thereby adding extra protein to it and making the whole problem worse. So, we now have to avoid LP's and hope we can solve the problem - with no way to see if we have. ACK!

And just how does all of this medical mumbo jumbo translate to my diet? Hmmm, let me try to figure out how to explain it. I guess the best description would be rocks. Big, ugly, really heavy - Rocks. I'm trying hard to stay on the diet path, and I feel like I keep running into rocks. I didn't put the rocks there, but I can't move them out of my path either. I keep having to go around them, and its making staying on-course more than a tad bit difficult.

Before the doctor's appointment, I had already seen the misery of the scales. I already knew my weekend of debauchery had brought me home with 3 pounds more than I left with. This was Rock #1, the I've-already-gained-wieght-back-so-I-might-as-well-give-up-Rock. I ran smack into Rock #1, and lost the fight. I couldn't help but eat that last bite of the forbidden brownie that had been lurking in my pantry.

Running into Rock #1 and losing the fight, threw me headlong into Rock #2, the I-just-screwed-up-and-ate-something-bad-so-I-might-as-well-eat-more-Rock. While I did run headfirst into Rock #2, I was able to soften the blow a bit with a previous semi-intelligent food purchase. Rock #2 rattled my brain convincing me that I needed carbs, carbs, carbs! (another weakness to my stress sirens). The call of the carbs was so LOUD, I gave in and ate this god-forsaken allergy-free, wheat-free, dirt-tasting cereal I'd bought for the weekend trip. I mean, I was desperate. This stuff was AWFUL, but I just had to have cereal. Criminy - stress has a life all its own.

After reeling from Rocks #1 and #2, I headed off to the fated doctor's appointment. Suffice it to say, her news brought the biggest boulder yet, ROCK #3. Depending on how long I look at Rock #3, it can sometimes seem to shrink, and sometimes look 20 stories tall, and three leagues wide. Funny though, I seem to be handling Rock #3 the best. Maybe its the head injuries I sustained from Rocks #1 and #2, but over all - I'm starting to forge a path around #3. Believe me, its SLLOOOWWW going. Every inch I make it around Rock #3, there is a hideous stress scream that is begging me over to the dark side. The screams have made me open and shut the 'fridge 1001 times this evening, but at least I haven't been removing things from it - just wasting electricity looking into it wistfully.

I believe, if I can make it around Rock #3 in one piece, with some semblance of sanity in place, I may actually have a chance at surviving this path. Maybe, someday, I'll learn how to dynamite those stupid rocks and avoid them altogether...

Wow, wouldn't that be lovely?

Crazier than normal, Cancer Mom, Alicia

2 comments:

Tammy said...

Thanks for sharing the latest with us Alicia! Your stress levels are undertandably definitely high, but you're really hanging in there. One day at a time, right? Sounds like the weekend trip had perfect timing. I'm glad to hear that Avalon's eyes are doing so great; keeping my fingers crossed that the proteins will go back down and be a "simple fix". Hugs to everyone! Hang in there!

Anonymous said...

Whatever happens, we'll find a way to deal with it...that's what I keep saying, right? It's my belief that recognizing your 'triggers' (be they alcohol, food or something else) gives you the tools to deal with them. You are filling your box with tools for the fight...good work!