Smackdown Round 2!

[NEDenise]

So...
I've now had two doses of Avastin. So far, so good...I guess. No side effects...but I didn't expect any.

But, I did have a nice surprise the day of the second infusion. The docs had conferred - med onc & neurosurgeon - and if I was willing, they wanted to start weaning the steroids again...slowly. Now...I bet you can guess what I said! :)

So, starting the next day, I dropped from 8mg/day to 6mg/day - which may not seem like a big thing to you...but that's the smallest dose of steroids I've been on since January...yep! that was 5 months ago!

And again, so far so good. I'm hoping this means that the Avastin is shrinking some of that necrosis. Please, God...let that be what's happening! And, if things go as planned, I get to drop to 4mg/day on Memorial Day. With my luck, I'll become immediately dizzy, wobbly, and nauseus...but I'll cross that bridge when I come to it. :)

My swollen face and buffalo hump are not receding, BUT I have stopped gaining weight at an alarming rate! (I had gained 15 pounds in the previous 17 days!) So...there's my silver lining!

Thanks for the prayers and good wishes!
You've all been so important to my mental health through this sh&% - storm!
This cr#% - carnival!
This brain-met brew-haha!

Please keep the prayers focused on shrinking all that goo!
Love...
Denise

[Jackie07]

Thanks for the update, Denise.

Glad you are doing well on Avastin. Will continue to pray for gooe treatment and that you will be NED soon.

Enjoy the long weekend.

[Becky]

Denise

I am hoping all goes well for you. You are one of my heroes.

Have a wonderful, undizzy weekend!

[Ceesun]

Good news indeed!! You go girl!

[tricia keegan]

Glad to hear it Denise !!!:)

[Redwolf8812]

Always in my prayers, my Philly friend.

Love,
Penny

[caya]

I hope you can soon live up to your name, dear NEDenise!!

all the best
caya

[Pamelamary]

Denise,
Glad to hear the Avastin isn't causing problems, and hope it has started doing its job in shrinking the nasties. Good luck with cutting down on the steroids - we want you with cheekbones and hump-free as soon as possible.
Love and positive vibes from down-under..... Pam

[NanaJoni]

Hoping in a few days you will be the "Incredible Shrinking Woman" - and that is really good news about the Avastin.

[Bunty]

That's good news Denise! And so good you have a great medical team!
Looking forward to hearing more updates on your necrosis shrinkage, and your transformation back to your old self!
Cheers Marie

[karen z]

Denise,
My prayers are focused..................
Best wishes,
karen z

[Andrea Barnett Budin]

Denise, Round 2 sounds hopeful indeed.

Weaning is grand. May you tiptoe steadily through it. As you un-swell, though you'll always be swell to me. Tehe...

Your Spirit is so radiant, I just love you. You've been through so much but do it with such style I think we all marvel! That's what a winner looks like!

Please keep us posted, as we're each focused on your goo and praying it be gone!!

Andi

[NEDenise]

Thanks, Andi!
I'm feelin' the love! :)
Denise

[ammebarb]

Sending my very best wishes for successful weaning from the steroids and great results from the Avastin! I think of you regularly and am keeping you in my prayers.

Barb A.

[Laurel]

Told ya I had a good feeling about things....Three cheers for Avastin!

[Mandamoo]

Go girl! I like the idea of cheekbones...

[Paula O]

Here's to very successful downward titation of the steroids!

I'm glad you are doing well on the Avastin, hooray!

Paula

[NEDenise]

Hey Friends...
So, in case you've ever wondered just how goofy I am sometimes...let me tell you the tale of how I scared myself silly this weekend... Let's call it ~ "When you hear hoofbeats...look for horses ~ not zebras!"

I had the 2nd Avastin infusion...I dropped down to 6mg/day of decadron...
Mon, Tue, Wed...even Thursday...I felt fine. No dizziness, weakness, nausea... NOTHIN'! Yay! But hold on...not so fast...

Friday morning I woke up and I felt baaaad. I was dizzy, had a headache, felt nauseas. Oh s*&t I thought! What's going on?! The swelling is getting worse! Now I'm screwed!
But, I had a busy day scheduled...meeting at son's school, errands, lunch date, grocery shopping... so like any good woman/mom worth her salt, I plastered a smile on my face and set off to muddle through my day. I actually found myself hoping I was coming down with a stomach bug. Can you imagine? Anything but brain swelling!

Now, as an aside...allergy season in our neck of the woods has been brutal this year. When one of us has a terrible runny nose, we joke that they're "leaking brain lubricant". All four of us had been leaking quite a bit. I even joked that I wished mine was the "brain goo" I need to get rid of - not just lubricant.

By Friday night, I was getting worried. The dizziness was getting worse. Saturday morning I woke up to all the Friday symptoms...but with weak achy legs too. Uh oh! Not good. Now, I was starting to get scared. New swelling would be a very bad sign, indeed. I found myself running through the "signs of a stroke" list in my head...just in case.

It wasn't until late afternoon that I realized I wasn't "leaking brain lubricant" at all anymore.
And then it all fell into place:
All that fluid was stuck in my head.
Which meant my ears were clogged.
Clogged ears make you dizzy.
Dizzy people feel nauseas.
And people who go out all day, walking waaay more than usual...
get sore legs the next day.
Duh!! Not tragic medical issues...ALLERGIES for heaven sake!
HORSES! not ZEBRAS!!

I took a Benedryl, and some advil. Slept for a few hours while they worked their magic, and felt like a new woman! Or...actually, more like the 'old' woman I had been on Thursday! What a doofus!!

So, thanks to Benedryl, and better living through chemistry...two days later I was able to drop the steroids to 4mg/day, on schedule...and no problem! I'm so excited! That can only mean the swelling is decreasing. Thank God!!!

Still no change in all the puffiness...but it took months to build up...it's not going to disappear any quicker! Big deal! In the scheme of things...I'm just so thrilled to think that the Avastin seems to be setting things right...I'd even settle for permanent puffiness if that's what it takes!

God is good, all the time! I just need to pay attention...all the time!
Thanks for checking in...
Denise

[norkdo]

Love you Denise!!! Keep on posting please!!!!

[Mandamoo]

Ahhh - it's that old Allergy pretending to be brain swelling trick...
Teehee!

[NEDenise]

Can't believe I fell for that old trick!
What's next?...a banana in my tailpipe?! (Beverly Hills Cop...Eddie Murphy....)

:)Denise

[JennyB]

That old Allergy trick has had me on the back foot a few times too - Port Hedland (north west Australia is VERY dry and thus very hard on my poor old English sinuses - it can get confusing at times thats for sure..........

[KsGal]

A banana in the tailpipe...lol! Keep taking your allergy meds, will you please? Loved your story. I do this, too. I had a pimple in my nose (I know, gross), and my nose hurt so bad for three days. I was like..great, now I have nose mets. Its spread from my brain, and now its in my sinuses and nostrils. nose mets..lol. The allergies are awful this year, but its so hard to stay inside with the nice weather and the sun out. Im glad you are feeling better. Continuing to send lots of prayers and positive energy your way.

[NEDenise]

Jody!
NOSE METS?!!
Now, that's funny!! Thanks for the giggle!
Denise

[Mtngrl]

So, so glad you're doing better, Denise.

[Andrea Barnett Budin]

When I was on Taxotere, I woke up every morning with the need to blow my nose -- profusely. For 1/2 hr every day mucous and blood came out. I'd use up half a box of tissues every morning. And I started to wonder, Was the blood coming from my brain???!!!

Next time I saw my onc I asked. He gently smiled, repeated the question, and firmly told me, That is impossible. There is no opening from your brain to your nose. The blood is not coming from your brain. It is probably coming from dried mucous membranes.

What a relief. (I honestly never even thought of -- NOSE METS...) Our imaginations are so amazingly creative. We go in all directions, and as a ca patient, we tend to get carried away.

It is good though, to report every and any side effect to your onc. No question is stupid. Just asking...

BTW, NeDenise -- Smackdown is such a good word! The imagery that it evokes is so badass...! Can I say that? :o))
Andi