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Steroid Smackdown Round 3!
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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 |
Re: Steroid Smackdown Round 3!
Yay! We will toast this good news tomorrow morning with our toast!!
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Re: Steroid Smackdown Round 3!
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. |
Re: Steroid Smackdown Round 3!
WooHoo! except for that darn scale.
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Re: Steroid Smackdown Round 3!
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!!! |
Re: Steroid Smackdown Round 3!
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.
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Re: Steroid Smackdown Round 3!
Keep on keeping the faith!
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Re: Steroid Smackdown Round 3!
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 |
Re: Steroid Smackdown Round 3!
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 |
Re: Steroid Smackdown Round 3!
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
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Oh Denise u always put a smile on my face. Ty for that.
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Re: Steroid Smackdown Round 3!
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 |
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((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. |
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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 |
Re: Steroid Smackdown Round 3!
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") |
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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. |
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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 |
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I have a product under the kitchen sink called something like "Goo Be Gone". Could you use that?
Keep the faith |
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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!! |
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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. :-) |
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