NEDenise vs NEDecadron Smackdown!
 

Re: NEDenise vs NEDecadron Smackdown!
 

Denise,
Hang in there. You have a great attitude.

Does your scan show the swelling or do you just go by the symptoms you are currently having? (remember my mom is also having a lot of the same problems)

KG

Re: NEDenise vs NEDecadron Smackdown!
 

PS I wish my Mom had the positive outlook you have.

Re: NEDenise vs NEDecadron Smackdown!
 

Hello Denise,

You are an incredible young woman. I marvel at your humor and insight. My thoughts are with you often. What I find most amazing is you are going through such a difficult time and yet I find that you so often posts words of comfort for others. You are a peach, dear Denise.

Take good care,

Jackie

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Dear Denise,

Thank you for the update. I understand that sometimes you do not even feel like writing. And here you are, giving us some of your time to keep us posted. I wish you the best for the scan results tomorrow. I will be praying for those results and for your well-being. You have an excellent attitude and that is a great example to many. I wish that the swollen areas go back to normal again soon and they do not interfere on the vanity issues (LOL). Wishing you the best Denise. Please forgive me if I do not write much, but I always read your posts. God bless you dear.

Re: NEDenise vs NEDecadron Smackdown!
 

Oh, Denise...you remind me of an old VBS song..."theres no one else, just like you! Theres no one else, just like you! You're you! You're you! Theres no one just like you!" Thanks for the update and prayers for something that will reduce the s/e of the 'roids for ya.

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I just love you and that attitude of yours! Keep the faith

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Well http://cdn-cf.aol.com/se/clip_art/pe...s/yeahyou-clip 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. http://cdn-cf.aol.com/se/smi/2b00001c91/06 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

Re: NEDenise vs NEDecadron Smackdown!
 

Denise,
I am at a loss for words.
Other than to offer you love, hugs, comfort & prayers.
You ARE keeping the Faith my friend.
Hang on tight!

Jessica

Re: NEDenise vs NEDecadron Smackdown!
 

Hang in there Denise! Remember words of wisdom from TriciaK, even the bible states "and it came to pass" - not "it's here to stay".

Awaiting your results as anxiously as you are dear one.

Love and hugs from me.

Re: NEDenise vs NEDecadron Smackdown!
 

Thinking of you dear Denise and sending many prayers and healing thoughts to you!!

Re: NEDenise vs NEDecadron Smackdown!
 

You sure have had your ups and downs. I know things are not pleasant for you right now, but please know all of us are hoping you will be feeling better soon.
Take good care of yourself and keep putting one foot in front of the other.

Re: NEDenise vs NEDecadron Smackdown!
 

Prayers for you daily, Denise. I'm really glad you took the time to update us. Sending best wishes for tomorrow and then your appointment. Hugs.

Barb A.

Re: NEDenise vs NEDecadron Smackdown!
 

Denise, I'll say it again, but you are amazing. I say that quite a bit on this forum, and to others, but it's true. The spirit that you, and many others have, is incredible.

Sorry you continue to struggle with the side effects, but I believe that it will come to pass as well. Your attitude and the love surrounding you, is and will be a great strength to you!

Sending you a healing hug for the scans.....

Cheers Marie xx

Re: NEDenise vs NEDecadron Smackdown!
 

You always let that "light" shine Denise!

I know that positive Attitude will stand you in good stead dealing with the SE's and kicking cancer to the curb.

Prayers for more good news and continued improvement.

Re: NEDenise vs NEDecadron Smackdown!
 

Sounds waaay more exciting and fun than it really is...but I got your attention! :) Yes, you certainly did, you little stinker, you!

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. You know, Denise, here in Pa we just let the vultures take care of our road kill. Saves $ and feeds the birds at the same time.....how brilliant. What we need is something akin to a vulture that goes in and cleans up the goo. Decadron reduces the associated swelling the goo causes....hmmm. Some M.D. needs to see this most excellent analogy and get back into the lab!

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. I may be revealing my bias here, but my bet is you are still quite beautiful...altered perhaps, a new face in the mirror which is disconcerting, but beautiful, smiling, weary perhaps, haggard on the off days, but...alive, breathing, functional, cognizant, HERE. And just lovely.

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!) You are in good company among many newly annoited "freaks". Just think of the newly burned, disfigured, limbless souls in Boston. They are still beautiful and breathing. You are so wonderful on the inside that I know you glow on the outside. These many changes that present themselves challenge our sense of who we are, I understand a bit with my gray hair and double chin, but the inside? Now that is only getting more interesting, growing, surrendering, stalwartly forging forward, trying to be grateful, and gracious....

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. Clearly not!
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. Me, too!
On bad days, retail therapy works very well on the internet. :) Are you a QVC gal, too?
I have my beautiful friends here...to whine to, lean on...and draw strength from! And your many friends here!
And...I know that God has a plan for me. I just hope it's one I'm going to be happy with...Funny how He never consults us on His plans for us. I think this odyssey and adventure of yours has great purpose. You have blessed me enormously, more than you can imagine, and I am just one. When you arrive at the pearly gates decades from now that crown on your head is going to weigh a ton. Better start neck exercises now is my sage advise. Back in the 80s I used to exercise to a Jane Fonda tape. There was an exercise where you inclined your head forward, back and side to side. In my twenties I thought it a ridiculous waste of time, but now let's just say I get it! And to think the things I used to say to poor Jane as I did those butt lifts! I repent of the awful things I said.....! She did help my butt. Now it sags into my shoes.....

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. You got it, kid!
Sending love to all of you! Right back at ya!

Re: NEDenise vs NEDecadron Smackdown!
 

Yes, you have my attention as well; 200%!!
Happy to hear you are OK. Sometimes OK is the best we can do given the circumstances; and honey, you are right; you have some circumstances.
I hate that you just feel lousy. I also hate that we can not wave a magic wand and give you the gift of health or at least the feeling of good health for even just a smidge of time.

So instead, good juju, prayers, chocolate, lovin' up hugs are wrapping loving arms around you. Attack that retail therapy with a vengeance. When you feel like doo-doo then a little purchase on QVC is a small price to pay for a good mental health lift.
XOXO
Love and Hugs,
Kim (from CT)

Re: NEDenise vs NEDecadron Smackdown!
 

PS - Becky, thank you for remembering AND reposting the wisdom from TriciaK

"even the bible states "and it came to pass" - not "it's here to stay".

Love it; brought tears to my eyes...so much truth.
XOXO

Re: NEDenise vs NEDecadron Smackdown!
 

You are amazing Denise!

In a short time I'm sure you'll be telling us the body "took out the trash" and you're feeling wonderful!!

Please keep us posted -- lots of good thoughts and prayers going your way!

Rachael

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Thanks for the update dear Denise - you are certainly a Warrior Woman. You have such a great attitude, I am in awe of you.

Keep well, good luck with your scans tomorrow (praying for great results) and a good discussion with the doc the next day.

all the best
caya