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Old 04-21-2013, 11:13 AM   #8
Andrea Barnett Budin
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Join Date: Oct 2005
Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Re: NEDenise vs NEDecadron Smackdown!

Well DENISE!

You NED DENISE have this canser thing down. I am glad you're okay, which coming from you means as you say, not great, not
terrible. On those days, I used to say when people asked -- tomorrow will be better. And that is what I'm hoping for you. We will all await your report back from the scans and neuro guy (I hate when the doc's nomenclature is his area followed by surgeon. Cause what do they believe in?! Surgery. But I hear your emphatic ABSOLUTELY NOT happening and that sounds like just the way I'd respond to such an idea.)

Yes, your body is confused by the new goop/dead tissue in your brain. Tell it to settle down. Dead tissue is a good thing. Is there hope of it shrinking on its own? My dead remains of tumors in my liver just hang there it seems. Each set of scans shows stable. I reassure my liver all the time that these new neighbors are harmless and to chill out. Perhaps a chat with your brain might help. Couldn't hurt.

So it's the fluid build up that is resulting from the necrotic tissue that's the issue, causing the imbalance? Steroids help that, so you have no choice (if there are no other options) to go w/that. You can't be falling and breaking other body parts. So bed rest at dizzy times is essential to your well-being.
(I had no balance problems midst my 10 yrs of Vit H, yet managed to skid as I stepped off a curb into a giant gravel-filled pot hole with a smaller pot hole at the far end where my foot got wedged into a position no ballerina could accomplish. That was followed by surgery w/pins and plates and 3 mnths of a cast above my heart, which isn't easily accomplished. That was followed by 6 mnths of physical therapy cause my brain, as docs warned, forgot how to walk. Talk about balancing problems. I sponge-bathed in front of the sink while standing on the 1 foot I was allowed to bear weight on. So not easy...)


I have a friend with some weird affliction, autoimmune nonsense that forces her to infuse weekly lest she get sick every 8 days, and she is on steroids, forever. So her usual petite self has been replaced with this very round version of her old self. But her new self is full of a shining Spirit, a happy, loving, smiling Soul who is grateful to be alive. DENISE YOU ARE SO MUCH MORE BEAUTIFUL THAN YOU THINK YOU ARE. Once you open your mouth, your True Self just sparkles all over the place and makes everyone want to gather round and be near you.

I know that unfamiliar face in the mirror is horridly disconcerting. I dab makeup at it for camouflage, struggle to get my curly locks to go where I want them to vs places where they conspire against me, put on earrings and something comfortable and yet stylish -- and face the world -- anyway.

Denise, you totally rock. PRINT OUT YOUR POSITIVE SPIN AND POST IT AROUND YOUR HOUSE. Keep it in your beautiful face all day, every day. (My favs from that list are the obvious. Your sense of humor is well in tact. I can sense you laugh often. And you cause others to laugh along with you. What a gift! Your cognitive abilities are apparent in your fabulously written posts every one! And I completely relate to your retail therapy by Internet. It's so wonderful to shop around from site to site for the best buy, to figure out how not to pay for shipping and then have surprise packages arrive at your door, like it's a party gift.

God's plan is your plan. For you to continue to shine through this dismal time and come out a newer, better, more evolved and even more enriched human being. I send you my prayers as I send them up, I am forward healing energy and empowerment to you as my fingers dance on the keyboard. Keep venting and let your radiance shine through. You are textbook perfect as a patient and I hope will soon only visit docs cause you're due, cause you'll be fixed and will be living as NED Denise.

Love to you my dear Sister,

Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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