Gammaknife, Tykerb...reality check

[NEDenise]

Good morning friends!
Some of my sisters here have asked privately for an update...so...I'm posting about how I'm feeling since starting my 'brain met treatment'. And...making a shameless plea for love, support and prayers...but on my terms.

~Since I'm the one who is more hopped up on steroids than Barry Bonds in his heyday, and as a result...a little "on edge"...
~And since I'm the only one who is living this exact journey...
~And since I'm not feeling so hot...

A few ground rules for this thread ...
unheard of...
I know...
but necessary for my happiness, healing and emotional health.

1. If you don't want to read "scary" things...stop now.

2. I'm NOT being
"imaginative",
"exaggerating",
or "whining".
I'm sharing what I hope will be helpful information, if God forbid anyone ever needs it. If as you're reading my post, you find that any of the words in quotes above is popping into your head...stop reading...and go to another thread.

3. If you are even tempted for one second to post an article, link, or comment about the shunts that can be placed in my skull to relieve pressure...stop now....Start a new thread for that. PLEASE! None of that here. I know what I need about that...and where to find more if I need it. Thinking about that option makes me sad and you know I don't like sad.

So...if you're still reading...I'll assume you're one of my peeps. The ones who love me...want me to feel well...who prays and sends healing thoughts. Thank you! You guys are the best medicine out there! So... after all those caveats...here's the update...somewhat anticlimactic at this point...sorry:

My brain swelling (edema) has gotten progressively worse in the 10 days since the Gammaknife procedure. I'm back to the maximum dose of steroids (4mg evey 6 hours) which keeps the pain and nausea at bay...but the feeling that my head is overstuffed is unrelenting. (Like someone jammed too much playdough back into the container and smashed on the lid.) My eyes even look a little "bulgy" sometimes.

The surgeon says as long as I'm not seizing, or vomiting...losing my balance...the edema is okay...it's how we heal, I guess.

Mostly, I just want to lay with my eyes closed...but I'm trying to do less of that...just to keep my spirits up. I'm feeling noise and light sensitive too. And even with all the steroids...I'm tired...physically, and mentally. I take a 3 hour nap, every 8 hours or so, around the clock. No "good night's sleep" in my day right now. The sleep schedule does help with getting the Tykerb in me at a time that's convenient though! Silver lining!

On the Tykerb front...no diarrhea yet...YAY! (Acidophilous gets my vote for that benefit) A little bit of abdominal cramping. Some mild nausea. No face rash yet either! (If I have to be fat, wrinkled, AND have acne...I'm not sure there's enough Zoloft in the world to keep me smiling!)

My knee joints are a weak spot for me...and they are achy...but I also had my first infusion of Reclast last week...so I wonder if that's from Reclast...and not from Tykerb.

Some tingling in my fingers...but not sure whether it's from lymphedema, brain edema, or Tykerb. Personally, I'm leaning Tykerb...it seems to coincide with when Tykerb is at it's best in my system.

Now all of that may sound like a lot. But truly, I still feel better than I did during A/C or Taxol. MUCH better.
~I'm still planning to go set up my classroom on Thursday. (My two handsome sons are going along to do all the "heavy lifting" for me)
~I'm still working on new learning centers, lesson plans, and fun stuff for September.
~Helping serve dinner at marching band camp tomorrow night.

~Been updating my work wardrobe by shopping online! Fun Fun Fun! (the larger, more-of-me-to-love sized me, does NOT fit into the pre-cancer sized clothing!)
~I'm hosting a dinner party next weekend...doing all my own cooking! Can't wait!
~In just a few short weeks, I'm hoping to feel more like the happy, healthy, pre-cancer Denise than I have in more than a year!!!

So, I guess, in short...
please pray for healing, patience with myself and the process...and some relief from side effects. Thanks for letting me share.
Love,
Denise