The SMACKDOWN continues!!

[NEDenise]

Hey!
Thanks for checking in on the continuing adventures of the...
Denise vs Decadron Smackdown!!!!

Well...

The brain MRI section of tonight's program goes like this...
the area of necrosis appears much less dense...which appears to have relieved some of the pressure on my brain stem and balance center. So that's good. It's not gone though...so the plan is to continue the Avastin and see if the necrosis continues to "fade away". Mickey and the goo-gobbler are on the job after all, so how can I lose?!!

The steroid smackdown continues, but clearly...I'm winning.
As of this morning...I'm down to 1/2 mg per day. (down from 16 mg/day 12 weeks ago!)
I was starting to think I'd never be free of these d$#@ drugs! But if everything goes as planned...Two weeks from today I'll be a free woman again!
A free woman who still can't find her cheekbones.
A free woman who has to exercise night and day till Christmas to lose the 50 extra pounds she's carrying around.
But...a free woman!! Yay!

I'm still a little off balance. And my handwriting is definitely NOT what it once was... because my arm is a little shaky.
But the headaches have stopped, and no nausea either. I feel like I'm really tired but I did the math, and I'm really only sleeping 8 or 9 hours a day. It just seems like a lot of time sleeping because for the past 6 months...4 or 5 hours was all my steroid riddled body needed. :)

I got the report from the CT of my abdomen and pelvis, and both were clear. Yay, again!
The report for my chest CT wasn't posted yet, and honestly...
if it's clear too...
my onc will tell me on Thursday at my appointment...
and if it's not clear...God forbid...
I can DEFINITELY wait till Thursday to have my world rocked by such tragic news!

Is that living in a state of denial? Well let me tell ya...

Friends, if that CT shows cancer in my lungs...
to go along with the cancer already in my brain...
I'll just be moving all my sh%$ to the 'state of denial' - permanently!
Hell! I may even run for governor there! :)

But...just like when my gut told me the brain MRI last summer would find a problem..my gut tells me this time, the CT news will be good. For some reason, I'm just fine with not knowing until Thursday. (soooo unlike the nosey, control freak I am normally)

I did look at the disk full of images they burned for me.
But alas...
while I know what to look for on the brain MRI...
no one has ever shown me what to look for on a CT...
so it was interesting to look at...
but I have no idea what it shows.

So, I think that's all the latest SMACKDOWN news!
Hopefully, on Thursday I'll be able to add the good news about the chest CT.

Love to all of you, and thanks for keeping me in your thoughts and prayers!
Denise

PS - If I do end up running for governor of the "state of denial" - I hope I can count on your votes! :)

[Redwolf8812]

All will be well my Philly friend. God is on your side.

Love, Penny

[carlatte7]

You could be Cleopatra, Queen of Denial! Lots of prayers heading up for ya!

[NEDenise]

Ooooooh...Queen....that's even more powerful than Governor!

:) Denise

[ammebarb]

Such good, good news! I'm so pleased for you, Denise. You remain in my prayers!

Hugs,
Barb A.

[caya]

Sounds like good news for you dear Denise - I am praying for a clear CT result on Thursday for you.

all the best
caya

[KsGal]

Everything sounds wonderful! So happy for you...Just keep pushing through the steroid wean, and before you know it, cheekbones!!!! I dropped weight like crazy after completely getting off the steroids, and Im sure you will too. Mostly happy that your symptoms are a lot better. Prayers headed your way. :)

[Mary Anne in TX]

And as queen you get to wear a crown and order people around!

[dawny]

Go Queen Denny!

[KDR]

Free is a big word, the most important word in my world! I am so happy for you!

On the CT scans, I never look at images, but know how to read the reports, which usually include a summation of the doctor's impressions. At my center, they are enumerated comparisons.

Feel better every day!

[Paty]

Dear Denise,

Thank you for the update. Love the way you put all together, love your attitude and will. Looking forward to good news on Thursday. Hugs to you.

Paty

[Catherine]

Queen of Hearts, Queen of Diamonds....You are tops in my book! Love your writing, love your humor! Sending you the best I can over the airwaves.

[JillaryJill]

Thinking of you this week and hoping for good results on Thursday.

[Pamelamary]

Who needs hand writing anyway? You go, girl!!!!!! Cheekbones by Christmas - the second coming?
Best wishes for Thursday..... Pam

[Bunty]

You are on the up and up now Your Highness! Good news, and I feel that more good news is coming with the rest of the scans.
Best wishes, Marie x

[whatz]

Here's to having no need to "move to the state of denial" and a clean report tomorrow!

[chekmark]

U got my " Chekmark" in the box for queen or governor, you rule. Great news and I bet it will continue to be good news. Stupid cancer doesn't know who it's messing with.

[Laurel]

You've got my vote for whatever you feel like running for, Denise!

[fauxgypsy]

Denise, on top of everything else you are the Queen of humor. I hope everything gets better. You have blessed everyone here with your sense of humor.

[Pray]

Your always in my prayers little Sis.

[SoCalGal]

I see my onc tomorrow, too. Hope we both get a good report! Sending good thoughts your way, my friend.

[NEDenise]

OK friends!

CT scans ALL CLEAR! Yay! So I won't be governing in the Sunny State of Denial for at least a few more months.
But I appreciate the promise of votes... and the elevation from governor to queen!

Interestingly, the CT of my chest showed a fractured rib that is showing signs of healing.
I knew my rib hurt too much to just be "radiation effect"!!
I don't know how it got fractured though! Hmmmm...

The report also says there's a small spot of pneumonia in my other lung.
I've had pneumonia 5 times in my adult life.
If I had pneumonia, I think I'd have symptoms!
My onc agrees...until we see symptoms... we're just gonna wait and see.

My steroid taper is down to 1/2 mg per day...
but boy do I feel baaad.
My body is not bouncing back the way it did the other times the dose dropped.
My adrenal gland has apparently become lazy, and likes the way the decadron does its job for it.
I asked if watching scary movies would jump-start my lazy adrenal.

My onc didn't miss a beat...
she said, "I don't think there have been any formal studies on that... but hey! what could it hurt?!"
I just love her!

If you remember, the neurologist wanted me to stay on Avastin for 4 more infusions, and then scan again.
Unfortunately, my insurance company is very reluctant to approve that...
so we're not sure what's next.

So... I'll keep tapering and tough out the side effects.
My level of sympathy for people fighting to free themselves from addictions has skyrocketed after this experience.
The body wants what the body wants!
No amount of will power counteracts physical symptoms.
Very humbling as one who likes to be in control.
God and I have discussions about this with some regularity...
He wants to be in control too! :)

On a happy note...
my weight is headed in the right direction now! Baby steps...
but I'll get there.
And hey! my new mantra has become "fat is waaay better than dead!"
Perspective is everything!

Please keep up those prayers for continued shrinkage of that swollen area.
They seem to be working!
Mickey and the goo-gobbler are keeping a close eye on things, I'm sure...
but prayer is really what will put an end to this ordeal!!

Sending you all love and prayers for YOUR healing and health!
Denise

[chekmark]

I am so overwhelmed with joy. I am doing the happy dance although I don't know how to do all that clever stuff you do and attach things. I had no doubts, the power of prayer and your positive attitude are two very powerful healing tools. Stay healthy my dear friend.

[NEDenise]

Darlene
This guy reminded me of your cat!
:)

[BonnieR]

Alot of good news there! Yea! Regarding the "pneumonia". Remember when I had the unnecessary lung surgery? They were trouble shooting a chronic cough, my lungs lit up on scans and it was thought to be cancer. It turned out to be residual matter from a probably old pneumonia (which I dont recall ever having!) My point, and I do have one(!), is that you very well may have residual things that are manifesting on the scan. Just might be old, not current. Have I made any sense?
Keep the faith!

[MaineRottweilers]

Elated for your happy news!!

[Pamelamary]

Wonderful news Denise!!! I sympathise with the withdrawal, and hope you, your doctor and the insurance company can soon work out the next stage of treatment.
Be kind to yourself..... Pam

[LeahM]

I had no doubts! Will I recognize you the next time we meet? I have a feeling you and your onc will win the smackdown against your ins co.!
Oxo

[chekmark]

Too funny. Not sure if the cat does the happy dance but he sure made me do one. The bad thing about that whole cat and my cancer story, if he starts climbing on me I wait to see what he will do. He seems to like to groom me and licks my hair, gross, at first I thought he was telling me something but I figured out he is just a control freak and just grooming me. He is persistent tho,I push him away and he comes back but hey he saved my life as weird as that sounds. Glad u r doing well Denise. Love your firecracker spirit and upbeat attitude. We all have learned from you. Now here is one that you have won, I am awarding you " Most popular and well liked". U will need a crown when u become queen.
Love ya girlfriend.

[Paula O]

Soooooo GREAT that your Cat Scan was clear and you continue to be able to taper the steroids. YEAH!

Paula

[vballmom]

Wonderful news! Your positivity is contagious!

[ammebarb]

Dear, dear Denise I am late finding your wonderful news! Gotta say it made my day!! Hope the insurance company comes around and approves some more Avastin. In the meantime, celebrate those clear scans, watch the added weight go, and the cheekbones reappear! Mostly, just hug that beautiful family in thanksgiving for the good news.

Hugs,
Barb

P.S. God and I have those conversations about control too.

[Jackie07]

So happy for you. Thanks for the wonderful post - I read through it with a smile and quite a few chuckles ... :)

[Andrea Barnett Budin]

Check this HAPPY DANCE out... Made me -- HAPPY! Hope it does the same for you all...

Carlton's Happy Dance - YouTube (http://www.youtube.com/watch?v=DaJUEXxf8pY)

ALL CLEAR! YAY!! is right on...

Fractured rib? Have you been laughing too hard lately? Hmmm is right.

Listen to Bonnie's words re pneumonia thing! Her opinion concurs with mine... We are professional patients, which gives us a degree of some kind medically.

I am so sorry you feel baaaad.

Of course you're adrenals are shot. Look what you've been through, Denise!! Still perky in your head, and through your fingers on the keyboard though...

I HATE INSURANCE COMPANIES. They come around, but feel they must wear you down and hope you'll go away first. They are in "business"... They really don't care about you... BUT WE ALL CARE -- BIG TIME!!! Sending them SHAME ON YOU energy as I type!

I recently discovered WITHDRAWAL is a hell all its own. I was off the blood clotting supplements for 5 days. My body was overwrought. Out of nowhere, I was getting the old hot flashes, overcome with emotions, felt like I wanted to cry (which I honestly don't do, despite it all). Then they stopped all meds -- but for heart -- the day before surgery.

WARNING TO YOU -- I only just learned -- you do not ABRUPTLY STOP anti anxiety meds!!!!!!!!! That can have serious neurological consequences. My brain is still messed up, and I'm back on everything since yesterday. Very foggy in there. Not totally psychotic but Wednesday night, day before surgery -- I could not meditate midst my 10+ hr bowl rushes, no food, no water from midnight -- blood sugar was dangerously low!!!!!!!!

YOU MUST SLOWLY, VERY VERY SLOWLY WEAN OFF OF ANTI-ANXIETY MEDS (ATIVAN, XANAX) and I took my Zolft w/a teeny sip of water along w/my heart meds pre surgery -- and I told them I did! Though they told me not to... I am a good girl and I listen to what I'm told, but common sense told me I needed that!

I was sooo foggy headed, shaky, had chills (couldn't work my mouse) -- and I am a hot girl/don't get chills. Felt like I was going to pass out all Wednesday afternoon and night and Thursday AM.

Lesson learned.

Hospitals need to have pharmacologists overseeing your and coordinating pre op instructions I have discovered. Maybe a Naturopath too. Western medicine is so centuries behind!!!

NO ONE TOLD ME the above -- or details about stopping my Byetta (for diabetes). I injected in A.M. as always and ate some jello with my larggggeee cup of tea. APPARENTLY THAT IS NOT A MEAL, AND AS THE BYETTA LOWERS YOUR BLOOD SUGAR -- YOU FEEL LIKE YOU'RE ABOUT TO PASS OUT.

I too Neddy have new respect for those fighting to free themselves from addictions. I suppose I am addicted to my supplements.

You're also right Denise, no amount of will power or positive thinking can counteract such powerful physical reactions to WITHDRAWL! You can't get "talked" down.

I too am one who likes to be in control. I could not meditate. And I meditate every day! My thoughts were racing and banging around in my skull and I could not catch them. I kept trying to bring myself back to the Present Moment. This is what I do alllll the time. Impossible during WITHDRAWAL!!!!!!!!

As for God, I talk to him/her, I talk to my body, I confer with the Universe, with my Teachers and Guides, and my Spirit. I explain what I believe I Expect, but at the same time I TRUST that we are always exactly where we are supposed to be. Tricky business, letting go, but not wimping out and putting it all in a Higher Power's hands. He/she gave us the power of choice. So I was just saying...

Yes, fat is waaay better than dead. Remember our Brenda's signature? "

I'd rather be anecdotally alive than statistically dead".

TAPER SLLOOWWWLYYYY PLEASE DENNY -- TEMPTING THOUGH IT IS W/ STEROIDS TO WANT TO SHOVE IT OUT OF YOUR LIFE... Don't mess with success.

My prayers for you are a continual stream. And for all who need it! Healing energy and Light, my dear Sisters!

You know how they do a CAT scan? You lie on a table and a cat walks all around you... :o)))

Andi
P.S. POSITIVITY IS CONTAGEOUS! TRUE!

Denise -- must ask -- how do you get BOLD in your TITLE of a thread? I can't even manage ALL CAPS, which I always aim for, but it just doesn't work out... What's the secret???

[NEDenise]

Thanks everybody!
I'm muddling though day 2 of the new, tapered dose. So far, so good. No headache...but lots of dizziness. As long as I'm careful not to fall down... I think I can handle it! :)

Darlene - I think your kitty is providing free "cat scans"!! And you don't even have to drink that nasty white stuff to get your clean bill of health! That is one valuable cat!

Andi - Carlton and Will are always good for a giggle! I have no idea how to make a title show up in bold. Happy accident?
Oh! Believe me when I tell you... there is absolutely NO danger of me trying to stop the decadron cold turkey. I feel lousy enough on the strictly managed taper! But this too shall pass. :)

Thanks for all the prayers and good wishes!
You guys rock!
Denise

[Andrea Barnett Budin]

Denise, I so envy your BOLD ALL CAPS!

Tis a wonderment. I will continue to strive to be like you!

YOU ROCK!

ANDI

[JillaryJill]

Denise,
So glad to read your good post!
Hope the dizziness subsides soon.

[SusanN]

Hey there Girl!!! Indeed, Power in Prayer!! I JUST caught up with your UPDATE!!! AMEN!!! So excited to see CT scans clear!! HUGS!!

[Pray]

I'm so glad your doing well! Peace little Sis your always in my prayers.

[NEDenise]

Hey Gang!
This is one of those good news/bad news times...

The good news is...
My face is starting to deflate!! In a week or two, I may actually have cheekbones again!!

The bad news is...
All I want to do is sleep!
I usually wake up at 5:30 from habit.
Today...I woke up at 9:30, took a nap from 12:30 till 4:00...
and now, at 5:00 I'm wondering how long I have to wait before I can legitimately lay down again!

Just thought of another piece of good new... I can't eat while I'm asleep... so I'm probably losing some of that extra weight too!

Okay... 2 goods...1 bad...I'll take it!
:) Denise

ps - still sorta dizzy though...hmmmm

[Andrea Barnett Budin]

Hey there, Slim,

Just have to interject, I am STILL recuperating from last Thursday's surgery (and last Wednesday's cleansing prep and blood sugar mess from liquid diet, plus antibiotic's dizziness and feeling like I was about to collapse, which apparently I actually proved w/my blood sugar readings @ hospital).

Move over, Denise. Sleeping late. Napping. It's 5:15, I just had dinner, and headed for the bed. Again.

I was thinking, after mastec/tram flap surgery I was a mess for 5 days but then was doing good. Today is 5 days with no end in sight. But then I realized -- I was nearly 20 yrs younger in '95...

If your body says, rest, Denise, I say -- do as requested! You and your body need it. Look at all you've been through, sleeplessness countering in there -- for how longggggg?????
Take good care of you, Denny, Neesy. Love...

Andi http://cdn-cf.aol.com/se/smi/2b00001c91/06

[StephN]

CHEEKBONES! Yes! But - they come with incredible fatigue at the end of the decadron wean.

You need to make up for all that "false energy" you expended while on the higher doses. I know - you could not help it - it is the upper/downer effect of that darn drug.

Anyone who had to endure that kind of routine for SIX months has my deepest respect. I only had to put up with that craziness for 2 months, and well recall what it did to me.

[norkdo]

Yay!!!!!!!!
Hooray!!
Omg, Denise, I am soooooooooo happy about your news.
Love and prayers,
Nora
xoxoxoxoxoxo

[Pamelamary]

Sounds all good to me - sleep as much as you can!! If that's what your body wants, listen to it. Here's to cheekbones!
Pam.

[LeahM]

Yay for cheekbones! Can't wait to see them. Meanwhile, sleep. It is obvious that is what your body needs!

[Rolepaul]

Got to get moving to train the body that you are a 500 hp person and not a 50 hp person. The decadron drag goes away in a few weeks. Until then, pick the activity periods carefully. Nina had a little of the steroid issues. Now it is pain between the top of the hips and the knees. I told her the pain in her backside was only fair after 19 months of hearing how terrible I am. I get off the couch at the end of next week, I think.

[KsGal]

Woo hoo! Clear scans!!!! That is so wonderful. Im so happy for you. I sure sympathize with you on the steroid taper. I was on them four months, and the taper really knocked me for a loop. I, too, took the four hours naps. As others have said...it will only be a few weeks. You will feel a little bit more like your presteroid self every day. Hopefully, neither one of us ever has to take a course of those dreaded things again! Sending lots of prayers, as always.

[NEDenise]

Paul -
Did I miss something? Why were you confined to the couch?

KsGirl -
I decided yesterday that if I ever have to be on steroids again... and then need to taper... I want them to induce a coma... and wake me up when it's all over. Think my docs will go for it?


SMACKDOWN Statistics...

Recumbent bike - can ride a mile easily

Weight - down 9 pounds :)

[BonnieR]

Independence Day! May your personal one be soon! I admire you so much. Keep keeping the faith

[NEDenise]

Bonnie,
You are so sweet!
But in the spirit of full disclosure...

I'm not sure there's much to admire...
I'm just muddling through because I don't have any other choice.

Like everyone else here, if I could just take a pass on all this... and have my old life back... I'd do it in a heartbeat! :)
Denise

[BonnieR]

I remember telling my surgeon "I want my old life back". She replied "you had cancer in your old life".
Keep the faith

[KsGal]

Bonnie...I like what your surgeon said. Never thought of that before...but I suppose its true. Id like to have my old life back too...but then on the other hand, things do change after this kind of diagnosis. You see things differently than you did before..its an eye opener.
I like the idea of being knocked out until the steroid taper is over Denise. If your doctors go for that, please let me know. I would be happy to relocate. Im almost 100 percent sure I will have to take another course of steroids here in the next few months, because if my brain scan isn't completely clear they are going to cyberknife. Woo hoo....
You've lost nine pounds already! That's awesome. Continued prayers...

[Andrea Barnett Budin]

We all think we want our old life back. But NONE of us want cancer back! Great retort, Bonnie. Will hold on to that wisdom.

Plus, I have learned so much, grown and evolved and become so much more than I was before, met some fantastic people, become even more compassionate and gentler and even more grateful for the smallest of things!

I'm sure I never raised my hand when asked, Who wants to get cancer. But I am stronger and braver and wiser for the hardships. Bet you all are too...

Denise, have you gotten even funnier? Wondering. Cause you can take your act on the road. Do a lecture tour at the very least inspiring people. They should have you in a new entertainment segment at bc symposiums. You'd rock the house!

LOVE you all my friends I'd have never known if not for cancer,

ANDI :o)))

[NEDenise]

Andi,
What you've described is my dream job! You be my agent and set that whole thing up, girl!

And, yes, I wouldn't know my HER2 friends if this nightmare hadn't struck... which just goes to prove that the darkest clouds sometimes have the best silver linings!

Denise