[NEDenise]

Hmmm....
Where to begin...

First...thanks everyone for checking in, sending love, prayers, humor, and for making me feel better. You are all so important to me...I can't even put it into words. I still find myself in awe of the fact that I have "sisters" who genuinely care about me...all over the world. Amazing!

Sooo...unfortunately, all the news from my latest appointments and scans is not what I would call 'good'. It's not exactly tragic either...but certainly not what I was hoping for...which was...
"Hey! it all looks great...check back with us in 6 months!" (a girl can dream can't she?)

The week that was...
Monday~scans...asked for copy of disk...self diagnosed slightly increased swelling...enhanced vascular image looks like fireworks display...very pretty, thinking of having t-shirts printed. Feeling frustrated by lack of shrinkage, but no new lesions. All in all...not too bad.

Tuesday~meet with neurosurgeon, he confirms my diagnosis (surprisingly wise, this man!)...does not have report from radiologist yet. I am now steroid dependent, and NEED to get off them...swollen face and neck are minor concerns compared to other health issues, all of which are popping up now...immune suppression, difficulty breathing, muscle weakness... We discuss adding Avastin to shrink necrotic tissue. He will propose it at brain tumor board Thursday PM and get back to me. Might be an insurance issue. Shunt not an option...not really fluid build-up...more a thick goo. Surgery still too risky - his opinion, and more importantly mine.

Thursday~See med onc~fill her in...she's on board with Avastin plan. Herceptin infusion. Still not feeling well...but hopeful there's an end in sight to this latest mess.

Friday~Neurosurgeon calls. Tumor board wants surgery. Huh?! Enhanced images evidently show not only necrosis but some indication of disease around the edges of the irradiated area. S&*#!! I just can't seem to catch a break!

I still say, "Nope"..."too risky...that's an option for waaaaay down the road...if all else fails." He agrees. Since my vote counts most...he will call onc who handles Avastin and see how to get that rolling. My thinking is...if there is cancer at the margins...it's been sitting there, doing nothing, for nearly 9 months now. Stable sounds okay to me. And, with no new lesions popping up...I'm thinking Tykerb is doing good things. Can't really see the upside to rushing into "death-defyingly risky" surgery.

So...that's where things sit. Surprisingly, I'm actually not freaked out. Maybe the 'freak-out center' of my brain is located smack dab in the middle of all that goo, and I can't access it! Or maybe, I'm just beyond being surprised by the next item in my cascade of bad luck. Or maybe...and I think this might be the right one...I just know in my heart, and in my gut, that this too shall pass. It's not my time yet...and I still have a lot of work to do before I move on.

Whatever! Just keep those prayers and positive thoughts flowing friends. I'm counting on them. And you can bet, I'm bouncing a bunch right back atcha!

Love to all of you!
Denise

PS - I'm down to 10mg of decadron/day...from 12mg three days ago...cross your fingers! Still freakishly bloated, but making a little progress.