Re: Steroid Smackdown Round 3!
 

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?!)

Re: Steroid Smackdown Round 3!
 

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

Re: Steroid Smackdown Round 3!
 

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.

Re: Steroid Smackdown Round 3!
 

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

Re: Steroid Smackdown Round 3!
 

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)...

Re: Steroid Smackdown Round 3!
 

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! :)

Re: Steroid Smackdown Round 3!
 

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

Re: Steroid Smackdown Round 3!
 

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

Re: Steroid Smackdown Round 3!
 

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.

Re: Steroid Smackdown Round 3!
 

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

Re: Steroid Smackdown Round 3!
 

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?

Re: Steroid Smackdown Round 3!
 

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

Re: Steroid Smackdown Round 3!
 

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.

Re: Steroid Smackdown Round 3!
 

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...

Re: Steroid Smackdown Round 3!
 

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

Re: Steroid Smackdown Round 3!
 

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! :)]

Re: Steroid Smackdown Round 3!
 

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!

Re: Steroid Smackdown Round 3!
 

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.

Re: Steroid Smackdown Round 3!
 

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

Re: Steroid Smackdown Round 3!
 

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