NEDenise vs NEDecadron Smackdown!

[NEDenise]

Sounds waaay more exciting and fun than it really is...but I got your attention!

So...since several of you have so sweetly PMed...patiently waiting for an update...which by the way I am so touched by...I thought I'd better just jump in and post.

I'm okay. Not great, but not terrible either. Cancer is definitely not winning...but Decadron and brain swelling are making things pretty crappy. I have scans tomorrow (Monday), and I see the neurosurgeon on Tuesday. But honestly...I already know what's up...my brain is swelling because the irradiated lesion is BIG, and my poor body just doesn't know what to do with all that dead tissue.

So...the fluid builds up
I start to lose control of my balance...
my right hand starts to shake
I end up in bed...laying around for hours/days...feeling nauseous, tired, and head-achey...

I take more Decadron for a few days...
The swelling in my brain goes down
but the swelling in my face and neck increases (you can't imagine what I look like right now, and vanity will not allow me to post a photo...but trust me when I tell you that I don't even recognize my face in the mirror)
I'm embarrassed to admit it...but there are days I just want to stay home, so I don't have to risk meeting anyone I know, looking the way I do.
And...of course, the longer I'm on these steroids, the more out of breath, fat, and weak-legged I get.

Brain mets are not for the faint of heart. I'm not expecting any great revelations from the scans...and I know already that surgery to remove all the dead tissue is ABSOLUTELY NOT an option. The whole gooey mess is just too close to my brain stem...and the surgeon has been clear from day one that cutting there would almost certainly kill me. I've asked everyone on my med team if there are other options for reducing the swelling...and so far...nothing.

So, friends, here I am...8 months after the GammaKnife procedure...battling the swelling...and nursing a codependent love/hate relationship with Decadron. It keeps me from seizures or stroking out...but it also makes me look and feel like a freak! (Grotesquely bloated is the phrase that comes to mind!)

Now...for the positive spin we all know floats in my heart and my crowded brain!
I'm not dead. (yay me!)
I'm not planning to die soon. (and we all know how stubborn I can be!)
Decadron...though the side effects suck...works.
I don't have any cognitive issues at all.
My family is awesome, and I get to spend every single day with them.
My body is NED...and I think my brain is too.
My sense of humor is still intact...and I laugh often.
On bad days, retail therapy works very well on the internet.
I have my beautiful friends here...to whine to, lean on...and draw strength from!
And...I know that God has a plan for me. I just hope it's one I'm going to be happy with...

So...surprise, surprise...a looooong post from Denise. Sorry. But it's been a while and there was a lot to share.

Please keep the prayers, healing energy, good juju, and love heading my way. It helps more than I ever would have imagined.
Sending love to all of you!
Denise