SMACKDOWN Victory!

[NEDenise]

The results are in...

STEROIDS 0 ~ DENISE 1

That's right! I'm finally "clean"!! No steroids in my system for an entire week now! And let me tell you... it was not an easy week! My body (my adrenal gland in particular) had grown quite lazy over the course of the SMACKDOWN!

The first 3 days without decadron, I literally slept 16-18 hours each day. And when I was awake, I felt very weak and generally baaaaaad! But on day four things started to improve. Praise God!!

Warning! the rest of this post is a downer - proceed at your own risk.


At first, I thought the residual off balance/wobbly feelings, and the shaky hand were part of the whole withdrawal experience but alas... no

Apparently the goo is still pressing on the "balance center" of my brain.
Kind of a bummer really.
I was hoping for miraculous improvement I guess.
I'm not sure where we go from here.

And as queen of "The Sunny State of Denial" I'm not sure I want to know.
My gut tells me that if surgery is the only option left... it would be soon... and it will not end well. And that makes me both sad and terrified.
Dying is not on my "Things to do this Summer" list.

But typing this out has made me realize that I need to call the MO and the neurologist TODAY! Knowing is ALWAYS better than not knowing. Thanks, friends!

Please, if you are a pray-er... pray for me.
Denise

[Vicky]

Ohhhh Denise- you have my fervent prayers! You've been so unbelievably put through the wringer with so much lately and you've survived and thrived through it all! I've been in awe and silent wonder how you just keep pushing through it all.

We just need to keep on believing and hoping and resting in Him- He has this Denise- He has this! I know our sistas will join in and I hope you feel all of the loving- healing- energy coming your way!! Love and blessings to you!

[KDR]

Denise,
Don't let your mind wander into dark places, stay in that sunny place. I don't think Denial is appropriate. You are living in the moment, and you are not denying anything. You look your adversary right in the eye, AND keep a sense of humor all the while.
I am always in your corner. Always.
Love
Karen

[Mary Anne in TX]

I love the State of Denial....even if only for a while. I know you need to find out what, when and why, but I hope whatever you hear; you can still wander back into that blissful state of denial for a while. I'll surely be praying and believing for only good things and miracles for you.

[BonnieR]

I think one of the most agonizing places in the world to be is that place of uncertainty. The not knowing. Because when we know, we can be in charge and make a plan of action and DO something. Even if its not something we look forward to Funny how that works
I love you and am keeping the faith for you

[JillaryJill]

Denise,
Prayers are in the works.

[SusanN]

My dear Denise...
To put a lil' smile on your face...YOU ARE SUCH AN INSPIRATION...loved the "Chemo Ninja's!!"...I didn't even see your "attachment"...DUUHHH, so I named myself: SHINKOU: which represents Japanese FAITH!!!
Be assured girl, I'm praying, believing, trusting and have Faith that God has His Hand of protection on you!!
HUGE HUGS!!!

[tricia keegan]

Denise, thinking of you and sending prayers and good wishes. xx

[NEDenise]

Okay...
so the neurologist's nurse practitioner called me back within minutes (I just love her!)

There's good news and bad news...
not tragic, just bad...
but if any of you are wondering who the top ten UN-luckiest people you know are...
I'm DEFINITELY one of them!
I just can't seem to catch a break lately!

So... because I like to end on a happy note... BAD news first...

Would you believe I've been challenged to a SMACKDOWN re-match!!
After being "clean" for only a week!!
They want me to go back on the dreaded Decadron. Can you believe it?

They're worried that
a) the fact that I'm off balance and can't accurately control my right hand/arm means there is swelling AND
b) they're also worried that the lack of balance will lead to ANOTHER fall (which I really don't need!)

Initially she wanted me to take 2mg/day, but I negotiated it down to 1/2 mg per day, with the understanding that I would increase it a little every few days until the symptoms subside. But, at some point I'll have to wean, AGAIN! Sheesh!

The GOOD news...
I've been taking Lapatnib (Tykerb) for months with no side effects UNTIL I stopped taking steroids.
Then I got everything! Headache, nausea, explosive diarrhea, fatigue...etc...

No, that's not the good news!
My luck doesn't suck that badly!
Give me a little credit people!

The good news is that if I start taking the steroids again... they'll protect me from side effects again!
At least that's what I think should happen... but I'm relatively sure no one ever listens to my opinion about things like this! :)

I still don't know what our "next steps" will be... both docs are out of the office today... but I'm personally hoping for more Avastin. It was working, but my insurance company does not agree that more is better, or even advisable. I'll keep you posted.

Thanks for all the promised prayers! I appreciate it!
I just love you guys!
I couldn't do any of this without you!
Denise

['lizbeth]

Denise - You are Tekuto Ki Ariku, cancer assassin. Ward off that stress.

So sorry about the damn steroids. I wish that you were getting better breaks. All this, and you are still so darn funny.

Sending love, and chemo ninja luck!

[ElaineM]

Congratulations on getting off the steriods. I hate them and avoid them whenever I can myself. I agree with KDR. Please try to stay positive. We never know when the next miracle will happen. You want to be ready for that. Meanwhile I have my fingers crossed for you that all will go well from now on.

[Becky]

Stay strong. I think the answer will come and it won't be bad. Don't ask me why I'm saying that but I am. You did a little experiment on yourself and actually suggested another by starting decadron with a low dose and working up slowly until you find the lowest effective dose. That was great thinking (so you know the ole brain is engaged, dear).

I think this "thing" will end up being alright. You might have to work harder at it than you thought but you are getting some answers and results. It will work out because you are so willing to work at having it work out. And you have tons of prayers, thoughts and well wishes on your side too and that always helps.

[ElaineM]

Opps. Didn't see your last post. Good for you to get control and monitor the steriods yourself.
Hang in there.

[Cat]

Denise,
I am sorry to hear you will need the steroids again, I was on them for a week and felt horrible getting off so I can't imagine what you've gone through and face again. We do become advocates for ourselves and I am so glad you are still thinking strong and proactive. Sending you the strength to carry this through because determination is what I've always heard come through on your posts. I wish I could give you an arm to lean on for balance in the meantime. Hope you can keep it to 1/2 mg.
Hugs , Cathy

[NEDenise]

NEWSFLASH!
Those of you who are old enough to remember...
imagine the teletype sound in the background!


So... the new plan is for the MRI to be Monday or Tuesday of next week...
instead of 6 weeks from now.

Then I see my neurologist on Tues. afternoon.

When he views the scans, hopefully... fingers and toes crossed...
there will be MRI evidence that things were going well while I was on Avastin...
but now that I'm off...
not so much.

And then, dear friends we start to present the evidence to the warm fuzzy people
who make decisions about whether my insurance will cover more Avastin.
Which of course they will
because all their decisions are patient-centered, NOT money-centered.
So, no worries there... right?

Oh well - I'm still glad I called. I feel better already just having a plan.

Thanks for all the support my friends!
Again... I don't know how I'd cope without you!
Sending love to all!
Denise
aka ~ Tekuto Ki Ariku, cancer assassin :)

[karen z]

Stay strong as I know you will.
Thoughts and prayers are coming your way.

[SusanN]

Perseverance and a plan...way to go girl!!! You're winning!!! :)

[LoisLane]

We cant do any of this without you either Denise. You are such a light...keep strong
and prayers for you. Lois

[JennyB]

Telex is whirring madly......

Glad you have a plan and glad the MRI will be sooner.

PRAYERS are with you

Jenny x

[Pamelamary]

I am working on an alfoil cap just for you, Denise - to focus those positive vibes. Will be thinking of you early next week, and hoping for better news.
Stay strong for all of us..... Pam.

[Bunty]

So Denise, when you are through this next stage, you have to start to write a book, or a blog, or something to share your incredible spirit to the world. We are all very lucky to count you as a friend, but I think the world deserves you too! So, bring on the Avastin and loads of good news next week. I am a prayer too, and I will continue to send up some special ones!
Love Marie x

[foleyjsr5]

Prayers being sent your way Denise x

[KsGal]

((hugs)) Just want you to know Im thinking of you and praying for you. My brain MRI is Monday as well, and I will have the results a few hours later at my rad onc's office. Hopefully you don't have to go too high on the steroids to get the symptoms under control. If my tumors have grown or, heaven forbid, if there are more of them, I will be doing cyberknife, and I'll be back on steroids too. Time for both of us to catch a break!

[carlatte7]

Oh, Denise...cancer sucks, 'roids suck, and most definately insurance companies suck! Fervent prayers going up for everything involved.

[NEDenise]

Marie - I've always dreamed of writing a book... even before I got cancer, strange, but funny things always seem to happen to me... or around me. The problem is once it's all written down... I don't know how to get it published... and I can't imagine anyone paying money for it!

I never made my blog public because as a teacher, I can actually be fired if my bosses think what I write is "innappropriate" ... profanity, criticism of them...that sort of thing. I can't risk that - my health insurance is through them! But it just occurred to me that I could use a pseudonym... like the Cancer Vixen did! I'll have to mull that over a bit... hmmm

KsGal - I soooo hope your MRI shows only the small lesions we already know about. If that's the case, Cyberknife should be a breeze! Just the break you've been hoping for, and deserve! I'll be thinking of you on Monday, :)

Thanks for the prayers friends, and for the moral support!
Denise

[Cat]

Hey Denise
Use your ninja name. Just don't release the code. People would be looking for the weird named Asian!
Cathy

[NEDenise]

oooooo Cat
You are clever! and devious! I like that!

:) Takuri

[ammebarb]

Sending my prayers, as always, Denise. Hope some more avastin gets approved soon! Hugs.

Barb A.

[Cat]

I'll look for your book ... Takuri ...
Mikachi

[Andrea Barnett Budin]

Dearest Cancer Slayer,

I see that look in the docs' eyes. I hear the worry in the nurse's voices. They are concerned. Too familiar with bad scenarios that can look like this.

I just refuse to identify with my emotional reactions. The experience is duly noted. Acknowledged. Even actively participated in when need be, as you have been doing Denise. You KNOW when to come out of the sunshine state of denial. I don't think it's that, personally. Fully aware, you are choosing to live on the sunny side of the street.

Your fears are not truth. Decidedly, leave no room for imaginings to distort reality. This isn't a time to postulate or assume. Don't blur reality. Just live in The Moment! Which is what you naturally do, I think.

Don't let the voice in your head rule you. You have this moment. And this... Don't go anywhere. This Moment is safe. The love and prayers offered to and for you will sustain you.

Fear can't exist if you are full of the Light of hope. In my heart I believe in miracles. Not bad endings!

Steroids do protect you from the side effects. Even they are not all bad! They're good for something! I love that you negotiated. I would and have done the exact same thing. YOU are in charge of your team of medical experts. It is YOUR body after all!

Do not believe in the story that seems to be presenting itself to you and scaring you.

Love, prayers, genuine caring and enorrrrmmmmoussss admiration -- oh and true appreciation for your wit and wily ways.



Andi

[NEDenise]

Andi and friends ~
Thanks for the votes of confidence... all of them! I need that! It's one of the reasons you guys well never ever get rid of me! You feed my spirit!

So far the side effects are still with me. I think they may have lessened a little, but I admit that might just be wishful thinking on my part. I tend toward that, only usually I call it optimism.

After talking to the neurologist's NP and my MO yesterday...
both offices and my nurse navigator called to check on me today.

I figure it's one of three possibilities...
1 - They are exceptionally compassionate and concerned medical professionals
2 - I'm not concerned enough, and they're more concerned than they should be
3 - They are worried because this is a dangerous situation... and I can't see that from my throne room in the Sunny State of Denial

Personally, I'm partial to option #1 myself! :)

Now...everybody hop on over to the "Keeping your mind off BC" forum and post your Chemo Ninja name! Then pick one of the other funny threads and put a giggle in your heart, and a smile on your face!

Laughter is the best medicine! Right?
Love to all of you!
Denise - Cancer Assassin!

[Cat]

I vote option #1 too. Has to be. Besides how could they not care about you? You must be a very special person to them and if you've told them you are a queen AND ninja cancer assassin they would most definately want to keep tabs on you. I'm hoping the weekend goes fast for you.
I'll be thinking of you Mon. while at my Dr. appt. and saying some prayers.
Mikachi

[Andrea Barnett Budin]

I am going with KATSU...!

A shout to awaken an enlightened state (satori). To focus ones energy!

It fits.

Also read it means victorious!

Thanks Denise for arming me!

And -- easy to remember...

[Jackie07]

Denise,

It's standard procedure for them to call you back the next day to check on you. I've done that many, many times. Our hospital has an 'on-call nurse line' available. They would always follow up our conversation the next day or two to see how I was doing.

And the nurses of the oncology department are usually very good at following up those who are undergoing active treatment. I'm glad you are being closely 'followed' ... :)

[jaykay]

Option 1, keep your chin up, ninja woman!

[Laurel]

Hey Assassin!

Sorry to read of your ongoing tale of woe. Sheesh, you really are due for a serious break. Stay on your throne, oh Empress of the Land of Denial, we have your back. Prayers heading heavenward.

[caya]

Denise, please know that I am sending big hugs and prayers from the Great White North for your MRI to show only good things!
Sorry you have to go back on the steroids, but it is what it is. You are such an inspiration to all of us!

xoxoxoxoxoxo!

all the best
caya

[NEDenise]

Laurel - thanks for the unending prayers and the elevation to Empress! Who knew you were so powerful!?

Caya- You are sweet, but I don't feel inspirational at all! I feel fat, dizzy, and frustrated!:)

Everyone Kind Enough to Check in on Me - Heading off in a few minutes to find out what the next plan of action is. Hopefully, this MRI provides the kind of evidence my docs need to convince the insurance company to get on board. (I know I usually like to self-diagnose but... except that "Mickey" looked a little crowded this time... and the necrotic area looked less dense... I don't know whether this shows what the ins co needs to see or not)

Stay cool everyone - especially my East Coast friends - it's going to be a scorcher today!
Denise

[CarolineC]

Denise,

I hope everything went well today-you have such a dedicated compassionate medical team and that helps so much-I agree with option #1. I am sending alot of positive and white light to you!

Caroline

[LeahM]

Denise I have been trying to figure out how to put into words the emotions I felt when reading your posts. I can't do it. Love and prayers are always being said for you.
Cool hugs to you
oxo

[KsGal]

Praying and praying that everything goes well today with the docs and the scan results. As far as poor little Mickey getting squeezed up in there...Off with his head!!! Lighting a candle and waiting to hear the good news when you get back.

[Andrea Barnett Budin]

Prayers sent from down south -- heavenward!

Waiting with all for words from you Denise. Poor Mickey, but I agree, off with his head. Less dense. Hmmm... With glasses, I saw denise... Are you in your head? No. You are One with your Spirit. Listening to your Inner Voice.

Just realized. Mice can squoosh down to flat to fit into the tiniest spaces. Mickey will be fine. AND SO WILL DENISE!!!

LOVE YOU,
ANDI

[dearjilly]

Denise,
I haven't been on in a while, as it's really hard to read anything....so that equals frustrating.
Anyway, I wanted to let you know that I've been reading up on what's happening in your world, and like my world....similar. I've been on the MRI "watch". I am just writing you to say hi and I am thinking of you, and I hope that you aren't too drained with this coaster. I am drained. SO.....hi and much love and strength to you. xoxo Jill

[Andrea Barnett Budin]

Missed you jilly. Glad to hear from you.

Denise -- waiting patiently-ish to hear from you. No pressure. When you can.

Love,
andi

[dawny]

Hi Denny
I'm with andi, waiting patiently-ish! Hope the news is good.

Hugs to you my friend
Dawn. Xx

[KsGal]

((hugs)) Thinking of you...lit a candle for you this morning.

[ammebarb]

Thinking of you and praying for you always!
Barb

[dearjilly]

Andi, I think of you often. Especially when I take half of a zinc tablet! lol

[Andrea Barnett Budin]

Hi Jilly. 30 mg of zinc is good. I don't go over. Don't need belly trouble, over and above my IBS. Oh dear. HOW ARE "YOU" FEELING, Jill????

Hellllloooooo Denise, Denny, Nisey ------- tap, tap, tap... Anxiously awaiting word...

Did I miss something?

LOVE, LOVE, LOVE,
ANDI

[Laurel]

Empress! Your Majesty! Your Royal Highness!

Getting worried over here in the central part of the state, Kiddo! Last I saw you were headed off to visit your medical gurus to see what they were concocting and then no update from Denise. The entire world is on the Great Kate Wait Watch, but we here on Her2Support are on the Queen of Denial Land Checking in With Us Watch, which is infinitely more important!

Really hoping you are just busy lounging by the pool in this heat.

[Andrea Barnett Budin]

Laurel! You are sooo right on. Your analysis of the rest of the world and us is spot on...

Our Empress, Queen of Denial Land Waiting Watch is so much harder on us, than the reporters outside that hospital. We are all on the NEED TO KNOW list!

Didn't consider you lounging at the pool... Hmmm... I will hold that thought... Where is our Sprakle Lady of Laughter??? With Mickey Mouse hat in her head...

[Redwolf8812]

Still praying, Denise. Looking for good news.

- Penny

[NEDenise]

OH, my FRIENDS!!
What would I do without you?!
Let's not ever find out!
Thank you so much for caring about me, and sending love and prayers!

The short version is... I'm fine! Yay!

It was a very long and trying week!
When I got home from my appointment with the neurologist on Tuesday, I typed out all the options offered to me ...
and then the post vanished!
I was sooo pissed, and tired... I just couldn't type it all out again.

Besides, two of the three options that were offered were not things I was going to submit to anyway so...
it was just a matter of letting the much heralded,
but often wrong, brain tumor board come around to my way of thinking.
(They didn't meet till Thursday afternoon)

Option 1 - which I have already declined several times - craniotomy.
But, either the tumor board has finally realized the fool-hardiness of that option in my case.
Or the nim-null who keeps suggesting craniotomy was absent....
because no one brought that up this time.

Option 2 - the neurosurgeon told me there had been some clinical evidence that Avastin and WBR had a synergistic effect on HER2 brain mets.
But, as I pointed out to him...
I don't believe there is any disease lurking in my brain.
We're just trying to get rid of radiation necrosis.
In which case I asked, "Isn't treating radiation necrosis with MORE radiation sort of like saying -
gee I'm so hot with this sweatshirt on...
maybe I should put my coat on too!
Fortunately, when the beloved tumor board met,
both the neuro-oncologist and the radiation oncologist in attendance nixed that option.
(Not with the sweatshirt analogy exactly... but something along those lines.)

Option 3 - continue Avastin - because IT WAS WORKING!!

I'm sure you guessed... I prefer option #3.
Now it's just a matter of convincing the insurance company that Avastin, though very expensive, is nowhere near as expensive as surgery, recovery, etc...

So... I've been able to function on 1 mg of Decadron/day. I am no longer deflating however.
But... I'm hoping to have 20 or 30 years to lose those extra pounds... so I have time. :)

Thanks again for checking in on me. I only found out the tumor board results myself, yesterday...
but I'm sorry I caused any worry in the HER2 world.

Loads of love to all of you!
Denise
Queen of Denial
Chemo Ninja

[Laurel]

All is forgiven with that seemingly upbeat report. I guess it is now letter writing and begging your insurance company to grace you with the med. that will resolve the problem. Keep us posted!

[ammebarb]

Oh, I'm so glad you are aiming for the option that was working. Now, hope the insurance company gets on board sooner rather than later. You are always in my prayers!

[dawny]

Oh Denise, what a relief! We were all getting nervous out here.......

The Avastin sounds like such a lovely option, compared to the rest!

Dawn xx (you had me worried there!)

[JennyB]

Denise never been happier to see your bright smiling face and colourful prose! I hope the insurance company take the sensible option and keep you happy!
Love xx

[linn65]

Denise if I remember right you are a teacher, right? I know here Indiana the teachers are always talking about how bad the insurance is and if it is like yours I can see why. That's terrible you are fighting to get healthy and you have to fight insurance to do it. That's plain wrong! Also, I have done just what you did typed a bunch and It vanished and then said I was logged off....oh I was ticked. I feel ya on that one.������

I will have to google Avastin because I don't know what it is, but I sure hope you get it!

[Bunty]

Yay indeed! Glad to hear your news, and that you have such fighting spirit to tell that board what's best for you! Now, how about you give us the name of your insurance company and we'll start some sort of action on your behalf. They will see that you are so worth the cost of Avastin and so much more!!
Big cheers and hugs, Marie

[KDR]

Oh, Denise, what a relief! To hear from you, to see your options set out. I love "I am fine!"

Let's hope the insurance company comes through upon mere request...
Love
Karen

[KristinSchwick]

Dearest Denise,
Hang in there and be patient while God works out a solution. I know it is hard to wait and be positive but you've been so positive all along and such a "rock" to all those around you, now try to let it sink in that help is on its way. Prayers are coming your way and remember God works in mysterious ways. If being on steroids is a temporary solution to get you to the next big drug or opportunity.... then be patient and put up with it. If getting off steroids is in "His" plan, it will happen without a fight, so embrace his plan and just let go of fear and glide.
It doesn't hurt to have a good dose of anit-depressants, anti-anxiety and sleeping pills to help you along too. Don't forget to enjoy a good glass of wine every once in awhile too. Life is good.
Kristin

[SusanN]

Dearest Denise...so great to hear this news, you just can't go "MIA" (Missing In Action) too long...you will be caught as you are so loved!!!

[Pamelamary]

Great news, Denise - now you just need to face down that insurance company.
Best wishes.... pam

[karen z]

I am sure you are greatly relieved.
Now, get ready to deal with insurance but your docs should be doing quite a bit for you on that.

[SoCalGal]

Hey babe, sorry to be so absent...glad you're okay but let me cut to the chase: Genentech has a patient assistance program for Avastin, especially for patients who've been on it in the past. Your onc's office should be able to get you started on Avastin using the patient assistance program while fighting with the insurance IDIOTS. You can even call Genentech yourself to get their balls rolling!
Xoxo xoxo

[Andrea Barnett Budin]

Losing one's hard work, to have it dissolve in front of you and seep into there stratosphere where only the FBI can relocate it -- is so emotionally depleting! Outrage and exasperation take over my personality... I understand your frustration, on so many levels...

I am glad you are sticking to your guns re treatment options. So proud. The tumor board apparently moves like it's stuck in molasses, but they seem to be coming around to the patient's point of view. You are the ultimate Decider. It's your life, your body, your brain they are all talking about.

I must google nim-null. I love the term, even if you just made it up. In fact, especially if you invented it/coined it. Kind of a numbskull. Dimwit.

I believe in your belief -- that there is no disease there! You're just trying to get rid of radiation necrosis. Your analogy is spot on.

Guess they had to go through all the other possibilities before they became ready to see that Avastin is doing it's job -- and now they must convince the insurance company of its need. And, yes, it is less expensive than surgery, recovery, etc.

If 1 mg of D/day is keeping you balanced, which is key, stick with it till the Avastin finishes its work. You have the rest of your longggggg life to loss the xtra lbs and find some dimples...

We were all just gathering around to get updated. WE are sorry to harass you. But we do love you, Cancer Assasin/chemo Ninja! Oh, and Soul Sister. (And Kate
s t i l l hasn't had that baby...)

The insurance company will come around! I/we have had to fight for lots over the course of the yrs, and in the end, we get what we should have been given to begin with. Tenacity is key. They count on you giving up and going away. So not happening here!

I do remember Flori, Flori, Morning Glory having an altercation with getting Avastin. And she won. Don't you love calling Genentech and "getting their balls rolling"?!!

Always love you, Flori. Always thinking of you. Always impressed with your wisdom, your wit and your tenacity! How you doing out there in La La Land? Your advice is precious. As are you, my old friend.

Denise -- get their balls rolling...

Love to you, and all, as always,

Andi

[NEDenise]

My Dear, Dear Friends and HER2 Sisters!
I am touched, flattered, and overwhelmed by your love and support.
I am so sorry I caused you to worry...
and I did/do not for one second feel harassed by your attention.
In fact, if I had realized you were worried, I'd have posted sooner.

I promise not to go "MIA" again soon.
Patiently-ish is now one of my new favorite words!

I can't believe that HER2 royalty is more closely followed around here than real royalty. We really are an elite group!

Jenny - "colorful" prose - hahahaha! I get it!

Jilly - I missed you too! I was waiting patiently-ish to see how you were doing too! Is there a plan in place to "fix" the vision issue? That must be maddening!

Jody - Thank you for the candle! So sweet, and greatly appreciated!

Kristin - You are so right!
God does have a plan... and I am so grateful that it includes both Zoloft and Ativan!
I also hope it includes playing with my grandchildren someday!!
I have to come clean though...
I don't like wine much, and it doesn't mix well with steroids...
but chocolate takes me to my happy place! :)

Flori - Thanks for the heads-up on the Genentech Patient Assistance thing!!
You know I'll be all over that!
It's so nice to have the "voice of experience" whispering in my ear.

Marie - If I don't get my Avastin...
boy will that insurance company be shell shocked when my sisters from all over the world bombard them with letters!
I hope it doesn't come to that...
I know if it did, I know you could pull it off...
and I'm grateful just for the offer!

Andi- I do have dimples lurking in there somewhere!
And thanks, as always, for all your confidence in my decisions and support for what I believe to be true.
It means a great deal to me.
Now... as for "Nim-Null", I did not make it up. It's from the 70s show "Mork and Mindy".
Mork (Robin Williams) was from another planet (Ork) and that was his word for doofus, nitwit...etc...

So, again, my dear friends...
I'm so sorry I caused you to worry... and...
thanks for loving me enough to worry!
Denise

[Andrea Barnett Budin]

Denise -- I loved Mork & Mindy. Robin Williams was/is so very funny. Of course, I believe there is life on other planets. How could there not be? Did you notice the pea size of Earth? Teeny, tiny planet, so many galaxies. My favorite Martian was also a fav. I'd forgotten nim-null. So apt.

Third Rock (from the sun) w/John Lithgow and Jane Curtain cracked me up too.

SHAZBAT, FREM AND KREL were so Mork too. Remember them? When I get pissed off next time, instead of saying SUGAR, as my southern Mother did (along with shoot) -- I will try to use Mork's vocab.

So glad you felt the love. You were in our heads, as you often are...

Love Y'ALL... :-)),
ANDI

[dearjilly]

I liked your post! Sounds like Avastin, behind door number 3, was the best option. That's great!
Much love, Jill

[dearjilly]

whoops, just saw your post now.....
They just say....sorry, there is nothing we can do, but you can always have hope. I guess perhaps the tumour has cut off the blood supply/nerve. What I have realize about the brain though.....nobody knows. I will still have hope, but yes I am MAJOR frustrated by it. Can't drive, can't focus, yada yada yada....
I have been depressed (poo, I know) so I'm thinking of taking some anti depressants. I guess, since my vision has gotten worse, so have my thoughts. If I get headaches, I worry...if I get dizze, I worry.....you know the routine. I just don't know how to get out of this funk.
I wish I could just be the old Jill again, I don't think that's too much to ask!?!?! Oh, but without the amount of booze that I used to drink!! ;)
Missed you! Jill xo

[fauxgypsy]

Denise, just to let you know you are not the only unlucky one. Having beat down cancer (so far) I have since been diagnosed with a mast cell disorder and now, advanced end stage glaucoma. I really think about you often and your wonderful sense of humor. I hate that you have had this terrible disease but you have been a blessing to this community.

[Kkmom]

Denise - I am a pray-er and I will be praying for you. You sound like somebody that is just not afraid - that you look it straight in the eye and just keep on going - doesn't look like denial to me.
Stay strong - you have a whole bunch of tough women with you.

[KsGal]

Im glad to hear the upbeat reports, and Im glad that they are going to let you continue on the Avastin for a while because..like you said...its working! As always, prayers and positive energy headed your way. Big hugs..and a high five!

[norkdo]

Denise! I have been following these posts to you and am in awe of your massive Ninja spirit! All prayers and love ,
Nora

[BonnieR]

Just wanted to say a word to Jill. Don't just think about antidepressants, take some!! Or at least some Ativan for high stress moments. Have a talk with your doctor. I went through the early stages of treatment "cold turkey" and wish I had been taking the edge off sooner
You have a lot to cope with and should use anything available to ease the way
Keep the faith

[Andrea Barnett Budin]

Bonnie, You are always so wise. I was thinking exactly the same thing re Jilly's comment!

We need all the help we can get. If those drugs aren't made for people like us, who are they made for?

Also, Jilly, I have an older friend who was having loss of vision. She went to another doc, as the first said, Let's wait and see. They gave her Avastin injections in her eyes, over a period of months, and her vision improved. She is not a bc-er.

Trying to help.

Love to y'all,
ANDI

[dearjilly]

Oh thanks Andi! That would work for me with avastin injections in the brain! :) The tumour is right on the optic nerve. The messages are not being sent. My eye is good, just not where the tumour is. I did ask about avastin, but I guess I'll have to ask about it again. It's pricey, and I'd be buying it out of pocket. Now if I can find those pockets! :)
Much love to you Andi. Thank you so much for that. You are very caring.
Denise...I'm coming to you now....xo

[Rolepaul]

Dear jilly,
Talk to the Roche Herceptin patient support people. They might let you get the drug for free for this application.
Paul