Steroid Smackdown Round 3!

[NEDenise]

Hello Friends!
Just a little Smackdown update.
(Andi - I didn't make up the term, but you're right...it's exactly what I want to do to this whole mess!)

Had round three of Avastin yesterday, accompanied by a very relaxing and empowering Reiki session. A remarkable combo to my way of thinking. All that energy and good meds focused on the goo simultaneously...Mmmm Mmmm Mmmm - how could I go wrong?!

Beginning today, my decadron taper is down to 3mg/day!!
Woo Hoo!
I hate to tempt the fates...or jynx anything by saying it out loud (Hey! I'm Irish! At least here in America...superstition is always lingering just below the surface for us!) but...
I think, waaay in the distance...
I can almost see the light at the end of this steroid cluttered tunnel! Though it is always possible that the light is just a reflection off the remaining brain goo...
but you know hope springs eternal in my heart!

So far the taper hasn't sparked any of the usual symptoms...very good sign! But it hasn't lessened the ability to pack on pounds simply by breathing either. I'm taking comfort in the fact that my docs don't think this is unexpected. My body is really whacked out from all these months on high doses of steroids.
Ah well...one thing at a time. And to quote TriciaK, wise woman that she was..."This too shall pass"!

Echo on Thursday...hoping for good things. I've been out of breath lately, but again...I'm carrying a lot of extra weight...so I'm not surprised. And then, a little Vitamin H in the afternoon to sort of top off my tank in this war to keep BC at bay.

Thanks so much for all the prayers, good wishes and support. I'm definitely allowing myself to be cautiously optimistic that Avastin is going to be a success in helping my poor brain reabsorb the goo. But...again with the whole tempting the fates thing! :)

Sending you all love and light!
Denise

[LeahM]

Yay! We will toast this good news tomorrow morning with our toast!!

[Mtngrl]

Yay!!

So glad you continue to taper.

So glad Avastin seems to be helping you.

Just stay away from the @#$&% liar! Avert your eyes when they weigh you to calculate your dose. You're beautiful just the way you are.

['lizbeth]

WooHoo! except for that darn scale.

[karen z]

Hi,
The tapering IS good news and "this too SHALL pass".
Amy is right. Keep the tapering going and realize the scale is weighing you under highly unnatural circumstances, which can not be avoided right now.......but is meaningless at this point. Just go into a different "zone" (like the beach) when you step on or, as a colleague suggested when I first got all the bills that also had been sent to insurance, file this as "not of my concern". If you don't, you can easily fill your head with stuff that really does not need to be in there right now!!!

[MaineRottweilers]

Let me just say, God Bless your GREAT attitude. I find it truly inspirational. I'm really new at this, haven't started my chemo yet but had my port installed today. I am kind of watching you and reading back through your posts---not stalking but our cancers (and our attitudes---I hope) are very similar. Thanks for smoothing the path for me just a little bit.

[BonnieR]

Keep on keeping the faith!

[Bunty]

Taper on and on Denise! Plenty of time yet to get the weight down - the main game is goo reduction and you seem to be winning that one at the moment.
Best wishes, Marie

[NEDenise]

Marie, Amanda, Jenny, Dawn, Pam...all you Aussie Gals...

This has nothing to do with brain goo...but we hijacked Amanda's thread to discuss this VERY important topic...so why not this one?! :)

I introduced my boy to the world of Footy. (That's AFL - Australian Football League for those of you, who like me, are un-initiated)
OMG!
They loved it!
They've become instant fans!

We watched every video clip on the AFL site...met the teams, learned the rules...watched the highlight reels! The boys were even impressed with the refs' style of calling goals and behinds. They've been walking around imitating them for two days now! These are teenagers don't forget...not little boys. They immediately wanted to know when the next game was streaming so we could watch! We don't even pay for the NFL Sunday Ticket, but I think we'll be AFL subscribers by the weekend!

Such impressive athletes...well-muscled, NO fat, no muscle-bound behemoths...lots of great legs and biceps. That was more impressive to me frankly than to the men in my life...but there was a LOT of eye candy on the pitch at all times!!

And the game really moves! No downtime like in the NFL. Since I haven't actually had the pleasure of watching a match yet, I'm not prepared to support one team over another - and I don't want to start a "thing" here among the true fans...but based exclusively on jerseys...I like the ones with the anchors on the front and the team that wears the Gryfindor colors.

Thanks for the intro to the wonderful world of Footy! Those of you who haven't checked it out yet...Google AFL...you won't be disappointed! It must be Austalia's best kept secret!

Denise

[SusanN]

Dearest Denise...You Go Girl...Keep your eyes "WAY" up...you've got such a huge heart...don't let it "weigh" you down!! <3

[chekmark]

Oh Denise u always put a smile on my face. Ty for that.

[Bunty]

Oh yes Denise, those AFL lads are indeed 'athletic'! Great story about your boys (and you) getting into it.

I would just like you to know that if you would like to follow the reigning 'premiers', then you should consider the Sydney Swans. Just to confuse you a little more, Sydney is not a natural town for AFL, as Rugby League is the main code in New South Wales and Queensland, followed by Rugby Union. However, all the states have professional AFL teams (2 in Sydney), and we here have embraced the Swans particularly! So you can imagine that we are very pleased that the Swannies won last year's premiership. (Have you noticed that in Australia we like to add a 'Y' or an 'IE' to a lot of words?!)

Cheers Marie

[KsGal]

((hugs)) Denise. Thanks for being here and just for being you. Down to three mg is awesome...it won't be long now when you will be rid of those horrible pills. Im sending lots of prayers that your scan came out perfect. I was short of breath on the steroids as well.
I think you and I both need to throw away our scales, btw.

[dawny]

Lol Denise., glad you like the game, it is very fast moving. There are some very nice boys (check out my teams Geelong Cats' Jimmy Bartel and Joel Selwood, lovely young men!). Maybe your boys will play it with their friends and then you can get a team together, you have time for that, in your spare time, don't you! Lol. Now Marie's Sydney Swans maybe current premiers, but they are still newcomers (lol, I think the y have been around for thirty years or so!) so I think thinks it's Geelong' year again this year, we seem to do well every two years.

Anyway, see what's happened, Marie and I couldn't help ourselves, could we? We had to get a dig in about our own team, Amanda will be long shortly, with her two bob's worth!

What I wanted to say was, fantastic news Denise, and throw away those scales, mine don't work either, I think it's a conspiracy!

Love Dawny. ( see the "y" on the end of Dawn, like Marie says. I was born in England, and was quite horrified when people started calling me that!)
Xxxxxxxxx

[Cat]

Denise
Your wonderful sense of humor and gentle caring have kept me sane at times and I thank you for that. I would have loved you as a teacher for my kids and your students probably love you too.
I have not needed high dose steroids but I can imagine how horrible it might be. I know what the dex does to me just getting it at chemo. Weight is a frutsrating thing and I have to keep convincing myself that I cannot have the same dream of looking like Jessica Alba and be content to look better than Buddy Hacket! You're probably too young to know who that is, showing my age?
Anxious to go look up AFL!
Prayers to you, Cathy (I already have a "Y")

[Mandamoo]

Well I am certainly pleased about the smack down!

As for your AFL experrience - woohoo - eye candy indeed - they are all so tall and lean and I have to say I am partial to those well toned up arms...

Ending the debate about which team to follow I'd love to suggest my Brisbane Lions but we are currently "rebuilding" (I.e. code for we are playing like crap at the moment). Angus would prefer that you follow the Hawthorn Hawks - they really should have beaten the Swans (sorry Maree ��) last year and a currently top of the table.

In the meantime - may the goo keep reducing.

[NEDenise]

Okay...
Important things first...as an avid Phillies fan (Major League Baseball), I know all about rebuilding. We've gone from winning the World Series to 'snatching defeat from the jaws of victory' nearly every night, in less than 5 years!

Next important thing...I have always envied people who can add a 'y' to their names! There's no good way to do that with Denise. There have been one or two people who have tested out Neecie on me...but it just doesn't suit. All my brothers and sisters have names that can (and do) add that y...Bobby, Mikey, heck Sally doesn't even get a choice...
Even my own kids get Johnny and Benji here at home. My Mom's name was Dolores, and she hated when family called her Dolly...but I thought it was cool. So the y thing works for me, gals!

Third important thing...I'm going to have to check out the Web for a footy. The sporting goods store clerk here looked at me like I had two heads...then tried to sell me a rugby ball. The nerve!

And now...the smackdown update...

Those of you who have had an echocardiogram can attest...they usually take about 30 minutes. Because of all the scar tissue from my recon, and because I'm part of a study to track the cardio-toxicity of Herceptin treatment...my echos often take an hour. Yesterday, my study took 2 and a half hours! Because of these demon steroids, there is so much fluid packed on my body that it kept reflecting all the soundwaves! They literally could not get images of my heart through all the interference.
Now...this is not to say that I am "heart-less"...they did locate the old ticker eventually...they just had to inject little reflective bubbles into my bloodstream...then re-do each part of the scan. Very Star Trek!

In the end...the results were worth waiting for! My EF was a solid 55%! Woo Hoo! And wait for this, my friends! When I went upstairs for my vitamin H...I weighed in on the same scale they had used on Monday...and have I lost 5 of those pesky pounds I had packed on! I guess my body has finally realized that the steroids are tapering and is releasing some of that fluid I've been lugging around! Yay! Hooray! Five down...45 to go...but hey! At least I'm going in the right direction again! It also had the happy effect of reminding me that MOST of this extra weight is merely water...I won't have to spend months on the exercise bike to get rid of it! Very encouraging, indeed!

Scheduled my 6 month scans of chest, abdomen and pelvis for June 20th...MRI of brain will likely a few weeks later. Truly not expecting anything to light up on the June 20 scans. My body had been "clean" for well over a year...and I haven't had any break from treatment.

I just need that brain MRI to show the necrosis (that's what those tumor board folks call the goo) is/was re-absorbed...and nothing new has popped up to cause trouble. Not quite ready to speculate on that one yet...still cautiously optimistic though. :)

So much heartbreak here among our friends lately...praying for all of you...
Thanks for checking up on my smackdown progress
With love
Denise

[BonnieR]

I have a product under the kitchen sink called something like "Goo Be Gone". Could you use that?
Keep the faith

[SusanN]

Dearest Denise, yet I'm wondering..."Dolly", I like that as you talked about your mother...I was thinking..."Denny"...?? Just a thought, or even a combination of the two!!

The FACT remains, YOU ARE UNIQUE, one of a kind...name doesn't matter...

It is ALL ABOUT YOUR HEART...Lovin' on all of us!!

Huge hugs!!

[Mandamoo]

http://www.sherrin.com.au/home
Denise - it must be a Sherrin - if you have difficulty - pm me your details and I will send you one. :-)

[Bunty]

Denise (Denny), one little bit of information about AFL you may not realise, but I think with your Irish heritage will love, is that AFL is a game derived from Gaelic Football. Every year there is an international series between Australia and Ireland with "compromised rules" which is very entertaining, and it gives the two countries the chance to play 'internationally' - their only chance! Also, many players from Gaelic Football and AFL have switched codes, so often there are young Irish lads playing AFL here in Australia.
http://en.wikipedia.org/wiki/International_Rules_Series

(As an aside, I reckon your boys would probably love Hurling, which is a mad Irish form of hockey. Can you tell that my parents were both Irish and I've been indoctrinated?!)

[NEDenise]

Bonnie,
Laurel suggested Goo-gone too! But, surprisingly, there are no dosage instructions on the bottle for removing brain goo! Can you believe the carelessness of corporate America!?

Amanda,
Good to know which brand is best. I' on it!

Marie,
Don' know if you have them in Australia, or if you've seen them in your world travels...but Denny's restaurants sort of ruin that as a nickname for me. My hsband calls me Honey...so that counts. And the dogs think my name is Mommy. :)

Tomorrow...the taper is down to 2mg\day...fingers crossed for good things!
Denise

[norkdo]

Thank you so much Denise for the update. don't worry bout the weight. it will fly off when the scans show no further progression.

[Ceesun]

Denisey, Just chiming in to wish you all the best and continued good results...you are an inspiration! Hugs, Ceesuny who is actually Cathy

[Andrea Barnett Budin]

Hey Neddy! :o)))

When I saw Smackdown #3 I couldn't believe it. When you look at the scale, just say -- duly noted...

You are going down in a really good way... Little by little, but unceasingly. The fluid is draining, taking the goo w/it. (My liver necrosis or is that necroses?/plural remain after all these yrs. Just some dead scar tissue filled w/a bit of fluid/cystlike. Maybe that's why my scale says what it does! Whatever. I am here!)

And so are you Neddy. Nisey. Both feel good to me. Just saying.

That ECHO sounded ridiculous, but emblematic of your situation. And good results are all that counts in the end. May Avastin do its thing. Taper away on d... Feeling good. Looking good. Sounding incredible. As always.

You did lose me on the AFL chatter, and I would be the one to like the team w/the best color combination and the cutest mascot. The tushes would interest me but then I'd zone out. Sooo glad though that you and your boys can bond over this and all have so much fun doing it.

Keep us smiling, Neddy. It's perfectly fine, btw, to state your Expectation and Intention clearly -- for your body to hear and obey -- and for the Universe to respond to IN KIND. You would jinx yourself if you stated you KNEW something was going to happen, or if you were full of fear and gloom. That is clearly the wrong message to put out there! YOU are amazing, Nisey...

ANDI -- w/an I please. No y for me (just the sound)...

[NEDenise]

Friends!
Down to 2mg/day! So far so good!
My balance isn't "normal", but I'm okay with that. It's waaaaay better than it was a month ago...when I was still on 12mg/day.

I felt so much more like myself yesterday...I not only cooked a delicious dinner...what my boys have affectionately named Polish Soulfood - pierogies, kielbasa, onions, cabbage... I even made strawberry shortcake for dessert. Baked the little cakes myself! (Not sure if I've ever shared my deep aversion to baking. I'm generally not very good at it...so I don't enjoy it. But the shortcakes came out very well...much to my surprise!)

Hoping for more good (read that energetic) days ahead. Although, my eldest jokingly reminded me yesterday..."Don't get too excited Mom...you felt great last June too...
then you fell and shattered your wrist...
followed closely by the discovery of not one, but two brain tumors....
Something's bound to crop up this summer too!"
Such a smarta$$! Where in the world would a child of mine learn such sarcasm?!
Happily, the very fact that he feels comfortable needling me about it...tells me he's not worried. Always music to my ears!

Thanks for checking in on me!
Denise
Denny
Neesy
Neddy
Decey - That's what my younger sister called me when we were kids

An NEDenise, by any other name...you know the rest! :)

[caya]

Wow Denise, you are doing so well - I hope the 2 mg does the trick for you.

As for the smart a$$ kids, well, I think they got some of that from their wonderful no holds-barred mother (and I mean that in a good way)!

all the best
caya

[NEDenise]

Oh honey!
I speak fluent sarcasm! The boys have been raised on a steady diet of sarcastic humor! Always in good fun! Never used to hurt anyone. We're very careful about that!
But we do love to tease each other...and we laugh a LOT!!

I wouldn't have it any other way! :)
D

[Rolepaul]

Denny,
Send me a Private message when the docs tell you the Brain MRI results.
Nina is doing great. Scare in April was due to a change in MRI scanners. Confirmed with May results. I picked it up in April, but the brain/spine doctor said I was sadly mistaken. Proven right in May. Colorado is good for me.

[SusanN]

Hey there Gorgeous!!! Wonderful, Fabulous, Fantastic news ringing to my ears today!!! Thank you for the JOY!!! HUGE HUGS!!!

[StephN]

WEANING is WORKING! Great news for you.
Just a word in your ear that when I was down to the 2mg/day my piggy cheeks started to deflate in earnest.

Cheek bones - watch out - here they come! Extra chins - receding day by day. How is your sleep pattern? Coming back to normal? I know, it has been SO long, how do you know what "normal" is any more?

[NEDenise]

Oh Steph!
From your mouth to God's ear!! Will I even recognize cheekbones when I see them?! Should I have a going away party for that extra chin? Its been with me so long...it only seems right to mark its departure somehow. :)

I have been living "happily" on 4 or 5 hours of sleep for so long! I realized yesterday, when I needed a nap in the afternoon...that 5 hours wasn't enough anymore. Yay! That has to be a good sign!!

You know all about this steroid nightmare..in a way that one can only achieve by walking down that road yourself! Thanks for keeping me company while I trudged along. I hope neither of us ever has to pass this way again!

Denise

[ammebarb]

Oh, Denise, just absolutely loved reading your good news at weaning! I had the "moon face" thirty years ago with the steroids that came with my ancient chemo then. Now it's moon face because I'm old and fat! Here's hoping that things continue to go well, and you find your regular energy and sleep pattern again soon! You are always in my prayers!

Barb A.

[KsGal]

Woo hoo! This is wonderful news! Oh my goodness, your dinner sounds wonderful. So excited that you felt good enough to even bake shortcakes! And so excited that you are feeling more like yourself again. I hope every day gets better and better. Prayers and positive energy as always...

[JillaryJill]

Denise, I admire you. Your one great lady. Did you ever consider running for President? We need someone like you in office!

[NEDenise]

Guess what!!
My wonderful onc - Amy Sanders Clark - called me...
She, and my fabulous neurologist - Steven Brem - consulted and have decided that they'd like to have my brain MRI done, not in July as originally planned...
but,
wait for it...
this Tuesday!!
That's right...only four days till I get to see how much goo is GONE!!
I suspect they're almost as anxious to find out as I am. They lobbied hard to be allowed to try this treatment regimen...and I also think they genuinely care about me not dying while having the craniotomy I don't want!

I know the goo is not all gone, because my balance is still a little "off"...but hopefully it's reduced enough that my body can do the rest...
and those tumor board clowns stop talking about scooping the goop (craniotomy)! :)

Some of you, who have been trailblazers...trying out unusual/cutting edge new treatments are probably not surprised by the attention my two docs are giving to me and my progress...
But, I am not used to this level of attention from medical professionals! And, I like it! I don't like needing 'experimental' treatment...or immediate and undivided attention...but I admit...the fact that when I did need it...they were only too glad to provide it...makes me very grateful!
And...if it all works out the way they (and I) are hoping...WOO HOO!!

So prayers for an awesome MRI on Tuesday 6/18...
and a spotless CT on Thursday 6/20...
will be most welcome! Prayers are what I need most!
Because...I know in my heart that...
all this medical expertise...
all this professional devotion to my care...
all the medicine in the world...
only works because God is involved...and wants it to work. :)

Fortunately, he seems to be very fond of me (and all of you)...and seems to agree with me that I have a LOT more work to do before He calls me home!

I believe all prayers get answered...so...I'll let you know next week whether our prayers have been answered the way I'm hoping they will be. :)

Sending love to all of you!
Denise

Now...

Jill!
I haven't seen your beautiful wedding avatar pop up for a while!
Missed you!

It's very flattering to be nominated for president! Thank you! I am not however the run for office type. My feelings get hurt too easily, and I don't play well with others. Having to consult with a committee makes me crazy! I have a plaque on my desk that says, "For God so loved the world, that he did NOT send a committee". I could never work with Congress - the ultimate committee! They'd drive me either to homicide or suicide! If we ever want a benevolent dictator...I'm your girl!

But...my eldest son plans to be POTUS one day. So I may yet get a behind the scenes look at the White House! Then again...I'm not sure he can get elected, no matter how great I think he'd be! The kid has a heart of gold. He is young enough to still believe that everyone can and should have everything they need. He makes FDR, JFK, LBJ, Clinton and Obama look like slackers when it comes to making sure the elderly, children and the disadvantaged have what they need to survive. And, of course, he's very devoted to medical research...as he has a vested interest in curing cancer! :)]

[BonnieR]

Denise, we are as eager as your doctors to know what's going on in that head of yours!
And think you would like some post it notes I have. "God's on vacation and I'm in charge!"
Keep the faith!

[Barbara H.]

Hi Denise,
I look everyday for your posts, and am so glad to hear this positive news. I "hated" that drug and was manic when I was on it. One night I woke up and told my husband, " I could be tarred and feathered", and then proceeded to tell him that I was getting better. I actually remember this. I was absolutely crazy. I will be thinking of you on Tuesday, and I sincerely hope that you will soon be off this drug for ever.
Thinking of you,
Barbara H.

[Bunty]

The prayers for you will be ramped up for Tuesday Denise! And you do have a lot more work to do before it's your time, and that includes continuing to spread your love and energy on this board!
Best best best wishes, Marie x

[dawny]

Lots of best wishes from me too Denise, let the goo be gone, and let's see some cear scans already! You deserve it!

Dawny. Xxxxx

[Andrea Barnett Budin]

My thoughts of you, Neddy, and my prayers for you, are always with you...

And as usual, you are doing an outstanding job of working your way to wellness...! You never fail to amaze me, and to make me laugh out loud!! Ever grateful for that...

Andi

[NEDenise]

Hey Friends!
Busy week ahead...

Avastin #4 tomorrow. Steroids down to 1mg/day!! I think I might be starting to "de-flate" - which is what inspired my choice of cartoon, below! I have to get in all my fat humor before steroids are a mere memory! :)

Brain MRI - at the crack of dawn - on Tuesday. Then right to the neurologist's office so he can read the "films" and give me the good news.
Funny...I've gotten so used to asking for a disk of the images when I get scanned...then viewing them and self diagnosing...Tuesday will feel weird. I won't have a chance to make up my mind before the expert tells me what he thinks. :)

Wednesday - nothing medical - unless retail therapy counts!

Thursday - CTs of everything except my brain - man I hate drinking that white glop! I've never read my own CT images before...but my onc is on vacation till Monday...so under the heading of "there's a first time for everything"...I'll learn by doing...and check out the CT disk myself.

Friday - I anticipate a bit of a celebration! Perhaps some sort of adult beverage...since steroids and liquor don't mix...it's been nearly 6 months since I've visited Margaritaville! (on the rocks, with salt - in case you're wondering)

I know several of us are having scans this week. And others are looking for new effective treatments. Please know I'll be praying for all of us this week! We need all the good news we can get!!

Sending love and healing energy to all of you!
Denise

[Andrea Barnett Budin]

Scales, mirrors, photographs -- and glass store windows. I am always taken aback when I see myself. Who is THAT?!, I first think. Then, THAT DOESN'T REALLY LOOK LIKE ME. (I am sooo much thinner in my mind...)

Nisey, I am with you. Tomorrow I see the surgeon. Tuesday is all about you. And Thursday. Isn't there a spare radiologist who can read your CTs and report?! Hard on your own. Hate my docs are out of town.

I plan on sipping wine, as you visit margaritaville, toasting to your health and newfound deflation. The cherubic look is kind of adorable you know.

When I look at old pix of myself, I think -- I was too thin. My face looks so long. And my mouth looks so big. And I had (note past tense) so much hair!!!!!! I am rounder now, happier than ever and far more serene.

Off to our family celebration of Dads -- Paul and two sons-in-law!!! They each surely deserve a whole day.

One grandchild is off at sleep away camp, so we'll be 10 (6 adults and 4 kids, ages 6,8, 9 and 16). Oh, and 7 dogs. The dogs always party with us... Love my granddogs too.

ANDI

[Barbara H.]

Hi Denise.
I am hoping that you hear good new. I do not have to drink the white stuff, although I did at the beginning. They offer other flavors that taste like juice. You should request that, If they don't offer it, perhaps you could request that they consider offering it.
I will be thinking of you.
Barbara H.

[JillaryJill]

Denise,
I had a margarita in your honor. Good luck this week! Prayers are being offered on your behalf.

[dawny]

Good luck Denny, we are waiting to hear your results, even if you don't get to interpret them first ( where's the fun in that?!)

Will have a nice drink with you too, Necey

Dawny. Xxxx

[Cat]

Hey Denise,
Right there with you and wishing you the best scans ever! I just had body scan late thur and MRI brain and neck late today. Never read my own scans but I have looked at them in amazement. This is my first brain scan so I hope they don't find it empty all together! Sitting on pins and needles and trying to decide whether to call on scan or wait till it's all done.
Hoping time flies for you waiting for doc to return.
Prayers to you,
Cathy

[Cat]

Best wishes for a great MRI tomorrow.

[Bunty]

Big hugs from me for a great result today (as I sip a lovely glass of Aussie red wine - can't do margaritas anymore!)
Cheers Marie

[JennyB]

Can't wait to have that celebratory drink with you later today - good luck xx