Emergency mri &%#@$!!

[NEDenise]

Friends...
I never should have tempted the fates by re-claiming the NED part of my name!

For the past week, my balance has been deteriorating.
Then my trembling hand became a shaking arm.

Next, about 3 days ago, I noticed that sometimes the words I was trying to say didn't come out formed quite right. Only a few times a day at first... now we're up to 5 or 6 times a day.

But the weird symptom that scared me into calling my doc was a very disturbing vision "incident" in the middle of the night last night. I was clearly seeing an object that was not really there, flying toward me... and it happened every time I closed my eyes to go back to sleep, then opened them again. It wasn't a pink elephant or anything... just a greyish crescent shape... but scary just the same.

So... today when I saw the doc and described my symptoms and the increased dex dose...

they ordered a brain MRI stat, and held off on my Avastin infusion. Unfortunately, the special kind of MRI I get can only be done on one of the 20 or 30 MRI machines at HUP... and since it was already late afternoon, that machine was shut down for the day. So I go tomorrow instead.

Those of you who know me well, know that I'll be requesting a disk so I can see it for myself... but the docs are already planning who they can get to read it stat, in case it shows something "tragic" that has to be treated immediately.

So far... the likely suspects in this assault on my brain are...
~a new lesion... which would mean Lapatnib (Tykerb) had stopped working :(

~increased swelling around the area of necrosis...
which would mean that Avastin had stopped working :(

~or the least likely... there's been a very minor bleed... which seems, to my way of thinking, to be a very bad sign of things to come

I'm actually thinking the new lesion option might be the one I'm hoping for...
it would mean another GammaKnife zap, but...
been there/done that and it really wasn't bad.

At any rate my friends...
medicine doesn't seem to be doing the trick...
So please, more than ever, I'm asking for prayers, good juju, healing light, Reiki... whatever you believe.

I admit freely that I'm scared. I'm glad the scan is tomorrow, knowing is always better than not knowing... I think.

What also has me frustrated, and feeling down is...
After the last MRI was so great, I booked our Christmas vacation to Hawaii!
I've spoiled each of the last 3 family vacations by being sick...
Radiation burns and fatigue... herniated disk... confined to a wheelchair...
I thought for sure with only 2 1/2 months to go, and feeling pretty well,
that I simply couldn't get sick enough, fast enough to ruin this one. Silly me!!
Ted and the boys are sooooo excited... I hope this is something scary that can be treated and managed before it wrecks the trip... or worse, kills me and wrecks everything.

Thanks for letting me vent all that. You guys are my anchor in the storm.
With love...
Denise
~who really, really hates cancer tonight!

[Redwolf8812]

Praying, praying, praying. Please keep us posted ASAP. Thanks.

Love,
Penny

['lizbeth]

Denise.

I am so sorry that you are going through this. We will be praying for you, sending good juju, healing light, long distance Reiki.

Can your doctors let you have a snort of Avastin? Save the pharmacy the work of mixing it.

You know we will be waiting with fingers crossed to hear the news.

[LoisLane]

Denise all my prayers and healing light coming to you....whatever is going on here, let it be taken care of and you will be going to Hawaii. You are so incredibly strong and brave but I feel your frustration and sadness over this development. We are all with you Denise xo

[starwishn2]

Dear Denise - you will be in my prayers tonight, tomorrow and every day! I'm so sorry you have to go through all of this. You are such a strength on this board! Thinking of you~

Jeri

[suzan w]

Oh, Denise...you do not need this aggravation. No no no. Sending positive energy your way.

[Paty]

Dear Denise,

I am praying for you, hoping that everything will be fine. Crossing my fingers for good result. Don't stop dreaming for that great vacation in Hawai.

Love,

Paty

[Pamelamary]

Oh Denise! Crossing eyes, fingers and toes for you - will be waiting to hear your news.
Pam. XOXO!

[JennyB]

I hate cancer too!
NEDenise I am sending everything at you tonight esp hugs and parayers xx

[caya]

Denise I was heartbroken to see this post from you sweetie!
Damn stupid f'ing cancer... I am praying with all my might for you.

all the best
caya

[vballmom]

Praying!!! Sending all the positive healing thoughts I can! And hugs.

[Becky]

Sending healing thoughts to you. Awaiting good results.

[KsGal]

Well, this is a bit scary. ((hugs))

Oddly enough, I had a visual disturbance myself two days ago when laying in bed...red and blue flashing bright lights in my peripheral vision (and no, it wasn't the cops! lol). You know, I was scared at the time, but it ended in a few moments and I blew it off. My brain has never been quite right since the WBR, and I attributed it to the damage from that. Your post has convinced me I need to call the doctor. Thank you for always sharing with us.

I'm so saddened that you have these new symptoms, and only can begin to imagine how you feel. I hope you are able to get some answers as soon as possible, so you can started on the regimen you need to get rid of this once and for all. Im sending lots of hope and positive energy your way, and lots and lots of prayers.

[Lien]

That sounds scary indeed! Glad they will do the MRI tomorrow, so you won't have to wait too long. Sending calming vibes (for the: what if it is .... thoughts) and healing thoughts (so you can get rid of whatever it is that is messing things up in your head) and huge hugs, to chase your fears away.

Don't worry about the holiday just yet. You have bounced back more times than a basketball in a highschool yard. You can do it again.

Love

Jacqueline

[LeahM]

Sending you every ounce of every good vibe I have.
I really really really hate cancer to
And I really really really love you

[Vicky]

Ohhhh prayers, prayers and more prayers! So sorry to read this Denise!! I pray the scan is done and you are able to feel some of the peace and healing light we are sending your way.

[CoolBreeze]

Well, if it's the worst, and a lesion - they can probably zap it within a week, and then you'll be recovered enough to get to Hawaii, right? I did SBRT on the liver and all side effects were over and done within a month and I could go to Hawaii right now. All you do is walk from beach to pool to restaurant, yes? You'll be able to do that.

*hugs* Let us know ASAP

[MaineRottweilers]

Prayers for you, Denise. With all the strength I can muster, you have my prayers.

[KDR]

Denise,
We got this! Just relax (real easy, I know), don't think any way until it's known for sure what's really going on. It's all good,
XOXO
Karen

[Cat]

Prayers, Hugs, Good Juju, whatever you need I am sending to you. Hang on to Hawaii, it will give you incentive and something to look forward to. Visualize sitting on a lanai with coffee, tea or mai tai and a good book, listening to the waves crash. Take a deep breath and face this thing down, if anyone can, you can.
wishing you the best of whatever you have to do.
Keep us posted.

[JillaryJill]

I hate that you are going through this. Hugs and prayers for you and your family.

[CarolineC]

Geez Denise!

I hope your symptoms resolve soon- I am sending beams of healing white light in your direction to shower you.

I wonder if these symptoms are from the cancer or from your body being under so much stress. I haven't posted much about my "adrenal problem" but before I was diagnosed I had much the same problems you're describing - shaking,stuttering, visual issues such as coming into my bedroom at night and everything looking like it was in the first black and white movies with the flickering. I was having classic adrenal fatigue symptoms probably starting many years ago.

All your hormones are in disarray-insulin from the steroids, thyroid, estrogen (even though you're estrogen negative)-the adrenals control many hormones.
And look at all you have been through in the last year alone!

Hoping that you're finding some comfort from someone and that you'll be back on track soon for your trip!

[Bunty]

Stay strong my friend.... Prayers and healing energy continue to come your way from me. Remember you had a good result on your last scan which was not long ago......
Marie xx

[SusanN]

Dearest Denise...sending you HUGE HUGS and praying for strength, peace and healing!!

[NEDenise]

Well...
My regular neurosurgeon is out of town...
but the radiology doc who read the MRI said he didn't see any new lesions YAY!
or an increase in the edema YAY!

But my onc still isn't sure where the new symptoms are coming from.
She said, "Go enjoy your trip this weekend! And we'll get your Avastin infused on Monday when you get back." "When the neuro looks at the scan next week we'll see what he says. But for now, there's nothing emergent going on."

So I'm shouting in my heart, "Blessed be the LORD!"
taking 8mg of dex/day... which has really helped the symptoms a lot.
And enjoying my reprieve!

Caroline - thanks for sharing the info about your adrenal gland. Mine sure has been through the ringer for the last 6 months or so! Maybe there's some of that going on.

Thanks to all of you for your love, support, energy, prayers!! When medicine fails me, I know where to turn!

So... I don't know exactly what's going on... but at least I'm good for my weekend... and Hawaii might not be too much to ask either. You know me, always looking for that silver lining!

I'll let you know when I know more... but you're all so sweet to me, I didn't want you to be more worried when you didn't here from me for a few days.

Love to all!
Denise
~who is so grateful for all her HER2 sisters and their support/prayers/love

[dawny]

NEDenise, that is fantastic news, you go for your weekend away, and keep planning on Hawaii, I can see it is in your future! I bet you are so relieved

Lots of love
Dawn. Xxxx

[Ellie F]

Gosh Denise what a roller coaster ride! You've been on my mind since I read your post and I checked in as soon as I got up. Very very pleased to hear this news. Have a good weekend .
Love Ellie

[tricia keegan]

Denise I'm only seeing your post now and glad that at least you had some good news and hope you can relax a little and enjoy your weekend, sending healing thoughts to you.

[Bunty]

Aloha - you better get in practice saying that Denise! Good to hear your update, and have a restful, peaceful weekend.
Love Marie x

[jaykay]

So glad to hear the news. Deep breath and enjoy the weekend!

Xoxo

[Coux92]

Oh Denise, I'm praying so hard and often for you and great MRI results. I envision you doing the Hula with your family!

[michka]

Denise I am SO happy nothing bad was read on the mri. I was waiting for your post. I hope you will have a wonderful week end. Michka

[Jackie07]

Didn't get to read the thread until today. Glad you are going on your trip as planned. Have a good one.

[chekmark]

Praise god nothing new, whew, you gave us a scare but you r one tough bird. Never say never and Hawaii is a go. I used to live there so if you need any tips on places to visit,let me know. Mahalo.....

[Redwolf8812]

Thank You, Lord!
http://i992.photobucket.com/albums/af43/highbarstud/bth_smiley-Dancing.gif

Love, Penny

[Vicky]

Praise God!! So happy to hear and just know we will continue to pray for healing and answers and a wonderful trip to boot!!

[ammebarb]

Just seeing your posts today, Denise, and can't really express how relieved I am to see the result of the mri. Thank you, Lord! Now, enjoy your weekend.

Barb

[StephN]

NED -

Enjoy your weekend and walk carefully using your cane.

Have you taken any physical therapy? Maybe you have and I missed the post, but some specific exercises sure helped me, and I STILL do some of them.

[whatz]

NED,
PTL!!!! woot, woot ;-)

[Becky]

Yippee skippy!

[SusanN]

Indeed, Blessed be the Lord!! So glad to hear this news!!

[caya]

So happy to see your post Denise!
Keep well, enjoy your weekend sweetie!

xo
all the best
caya

['lizbeth]

NEDenise,


Hoorah! & Huh?

I am so glad that no big scary new lesions have dared to pop up in your brain.

I am even more glad that you don't have any bleeders.

What crazy symptoms. Shaking arm, you (of all peoples) short of words, and an UFO. Ah . . . the misadventures of being a breast cancer survivor! It sounds like something out of a House episode - quick, sell the rights to the story and make some spending money for Hawaii!

[LoisLane]

Yeah for Denise!!! OMG I did it again put the smiling face in wrong. So very happy to hear your news

[Andrea Barnett Budin]

Hi NED,

Just scooped in for a quickie. Computer out all day, and me out and about all wk...

Whoa! And YAY! I'm going w/Caroline's take. Of course your adrenals are shot! How could they not be?

Sending my love (even in my absence, I am beaming it your way anyway allll the time). Plus healing energy, soothing serenity... PRAYERS!!!

Assume you will be fine. LIVE in that assumption. You're drawing it to you. It already exists. Stay certain. And hold on!

Great big hugs, my NEDenisey,

Andi

[KirisMum]

Just checking in, Denise, and hoping for continued good news. You are our shining star. :)

[Pray]

Thank God! Thank God! I am praying ever so hard for you Denise and your beautiful family. Your strength and courage leave me in awe! Thank you for your sharing spirit, you are so loved by so many my friend. May the peace of The Lord be with you and your family always.

[starwishn2]

We need a "LIKE" button her! LIKE LIKE LIKE!

[LeahM]

Ah Denise! YAY!!!

[Cat]

Yippee! Enjoy your reprieve, you deserve some relief. Looking forward to hearing about Hawaii.

[healing]

Happy! Happy! Joy! Joy!

[CarolineC]

Denise!

Hope you're enjoying you weekend! You are one amazing woman! To celebrate I want you to watch this video- the words "when I'm feeling down I only wanna be with you" reflect how I feel about this site. I listen to this song everyday. Usually I post the lyrics version but I like watching everyone dance and celebrate.

I'm Alive by Michael Franti http://www.youtube.com/watch?v=Fw0oOjZydZY

[CarolineC]

Oops, sorry I just watched it and the insulting preview of Britney Spears' new song is the advertisement so maybe put the video on mute until the actual video plays because I find the preview songs are different and not usually what I find very positive.

[jacqueline1102]

Glad to hear the update, Denise. Hope you enjoyed the weekend with your family. As you can see from all the responses, know you are really cared about.

Peace to you,

Jackie

[deb808]

Denise,
I really really do hate cancer too .... I'm so sorry for the hell you're going through and will be praying for you and sending out healing light for strength in dealing with this new hurdle. I hope you find out quickly whats going on and fix it so you can take that trip to Hawaii with your family.
Hugs,
Debbie

[rhondalea]

Hi Denise,

I'm so glad that it's not anything dire, although having experienced similar symptoms (all but the shaking arm), I know it feels pretty dire anyway.

We have different genes, which explains why your brain has held up better than mine did, even with the additional treatment you've been subjected to. But holding up better isn't immunity to the detrimental brain effects of the treatments.

Aricept has worked for me--I'm very nearly myself again, although I still tire pretty easily (whether the labor is physical or mental)--but I have another friend who's taking Ritalin. Focalin is also possibility (and it's better than Ritalin for those who are taking tamoxifen, although that doesn't apply to you). If one of those won't screw up the medicines you're currently taking, you might want to consider a trial just to see if it will help some of the symptoms.

Oh, and for the flying things? Try a sleep mask.

I hope you had a fabulous weekend.

Love,
rl

P.S. to everyone else: I'm trying to be back. I don't know how it will go, but I've missed you all terribly, so I'm put forth my best effort.

[KDR]

Enjoy your weekend! Yay, Denise! I knew it, didn't I?

[deb808]

Yes! There is power in prayer... so happy for your good news...

[KsGal]

How was your weekend? Im just so glad you were able to spend it without stressing out about any new tumors. I hope it was wonderful and you were able to relax. Praying for you, as always. Know that you are amazing, and we all admire you.

[Saygoon]

Keep us posted on your progress - lots of healing thoughts coming your way!

[carlatte7]

Oh, Denise....i am sorry that you are dealing with more- again-, but glad no new uglies are the problem. Sending prayers...

[norkdo]

Denise....i come to look for you here. I want you to post more often! Please!!! prayers and love go out to you.

[Andrea Barnett Budin]

Me too. I am looking for an update on you, Denise.

I think of you ALL the time.

What's happening? Did I miss a post????

LOVE,
Andi

[NEDenise]

Hello My Friends,
Soooo sad about losing Amanda... have been in a bit of a funk. okay... a lot of a funk. Her pain must have been unimaginable. I'm glad she's found much needed peace. But, I just can't stop thinking about her husband and kids. So sad. Such emptiness.

I will miss her already, and want to post a remembrance, but I just can't yet. There are so many priceless things about Amanda... I don't want them to fade.

Losing so many friends, in such close succession... is starting to become overwhelming. It definitely has made me realize how much we need each other... well, at least it's made me realize how much I need all of you! As Shirley pointed out to me... you never know when or who your posts might reach out to... whether they were intended for that person or not.

At first, I thought I needed a break from the board and all the sadness... but I've realized that's exactly what I DON'T need. No one in the world understands what it's like to be us... except us. We have to be here to support each other. So... here I am... tear stained cheeks and all.

Honestly, I haven't been feeling well at all. I'm relieved that the MRI showed nothing tragic, of course.
And the weekend was fabulous!
The kids did great at the band competition,
the fall leaves were in their full splendor...
I got to spend LOTS of time with Ted and our youngest, Ben.

But... I just don't feel well. Like... full blown chemo, not good.
Which can reeeaaally drag your mood to the dumps.
The arm shaking is lessened.
The off balance-ness is tolerable.
No more visual symptoms at all.

Still having trouble with speech.
Now in the spirit of full disclosure... I have always talked fast... really fast.
I've actually had students ask me to slow down because they couldn't "listen that fast".
But this isn't exactly slower speech.
It feels more like how I talk when I've been awake waaaay too long and it just comes out slowly,
a little too quietly, and not crisp...
I drop the consonants on the ends of some words.
Does that make sense?
My brain is sharp... but not my tongue.
And, I could lapse into a nap at any time of the day or night, just by closing my eyes for a few minutes.

On top of that, I have a dull headache almost 24/7 and feel just a little bit nauseous too. I thought it might be related to my thyroid and adrenals but so far we haven't found evidence of that.
As far as Ritalin is concerned I took that before BC for what we thought was chronic fatigue. (thanks for the reminder Rhonda - and welcome back! I've missed you!)
I now think it was the beginning of BC ravaging my body.
I'm torn between wanting to feel better, and being afraid to mask symptoms that might kill me.

Now, friends, remember, you asked.
Please don't think I'm worse off than I am.
My cancer seems to be stable.
It doesn't get a whole lot better to my way of thinking! :)
I just wish I had more energy and could get more done!

Thank you all for caring about me and checking in on me.
I'm sure you don't realize how much your concern and support mean to me.
Believe me when I tell you that I get much more from being here than I could ever give back!

Sorry this got long. Hope it didn't drone on or ramble too much!
Love to all of you!
And unending prayers as you face the challenges in your life... BC related or not!
Denise

PS- Caroline, I loved the song... no "inappropriate" ad before the version I watched.

[norkdo]

Oh thank you Denise for your post. Thank you thank you.
Your spirit is such a massive treat. Whether low or celebratory it makes not one whit of difference. It just is something I crave to read. You are the most splendid, alive, and life-giving treat. It makes no difference whether your post is indicating sadness or disability or joy and accomplishment. You are the light and soul, to me, of this board and I can't stop rereading your posts, whatever they indicate.
Of course I would love great news and I know those will come. But don't forget to sleep a ton. The body heals during sleep. It has to shut down operations to heal. (My vet instructed "no walks" while my new four month old great dane is recuperating from kennel cough and ringworm...the latter provided by the free kitten the farmer gave me when i purchased the boston great dane pup at three months of age...thanks kitty!) It hit me like a lightning bolt. Of course! Bodies can only heal during shut down of operations!
Me too, re sleep.
I recall such fatique for a couple of years before discovery of "our" (yours and mine) onset of cancer at stage three.
Fatigue went away after treatment (well after the post treatment fatigue went away). Now it is back. I know it is advancement of the cancer beyond the node in my chest that was treated by radiation and so-called "disappeared" but i may be lucky and perhaps it isn't. I find out end of next month when i go for my scans. No symptoms but fatigue. Funny enough the fear is so minimal that the cancer advances because i have read these boards and know that the signature lines contain survival beyond the worst of symptoms that you, for example, are currently enduring.
So thank you for sharing everything as God is in the details of the posts and the excellent survival beyond the worst of pain and weird symptoms.
Love you,
Inspired by you.
You, to me, have become the heart of this site.
Manda's passing is hard on us. We honour her incredibleness in our tears for her.

[KsGal]

Denise...Im sorry that you have not been feeling well. I've been feeling the same, although so far my scans are stable. I think that, in my case, it's stress. I apparently can't handle emotional things or stressful things like I used to, which means I am less "me" than I used to be, which upsets me more.
Losing so many sisters here in what feels like a short period of time, and witnessing how fast things can change with this disease has really frightened me. Seeing so many warm, loving, intelligent women lose the battle right in front of my eyes has saddened and depressed me. But then, we should be sad. It's a terrible loss.
Apparently, in my "new normal" state, I need to find a new way to deal with and express my feelings that my brain can handle. Apparently laying in bed isn't fixing anything..
Just want to make sure that you know how much you mean to everyone here, how everyone looks forward to hearing from you and how much you inspire others to keep going forward. This site has been such a tremendous help to me, and all of us, and I am just so grateful to have found it and all of you. I certainly wish we could have all met under different circumstances.
Im going to keep working on getting my positive attitude back...but big hugs to everyone, and all of you are in my prayers.

[Pamelamary]

So glad to hear from you, Denise, even if you are feeling less than your usual self. Ramble you may do, but in the most delightful way, and drone - never! Which is part of why you shed so much light on this forum....
Warmest wishes..... Pam

[Bunty]

Denise - even in your darker moments, you inspire. Love you my friend. We are all here - right now - always.
Marie xx

[Lien]

Hi Denise,

Your symptoms could be burn-out stuff. You have been under a lot of strain for a very long time. Sometimes our bodies just tell us enough is enough and we need to do relaxing and fun things for ourselves. If your cortisol levels are elevated all the time, your system just crashes sometimes. I could be wrong ofcourse, but at might be something like that.

Hugs

Jacqueline

[Andrea Barnett Budin]

Hi Denise,

So distressed to hear about your crappy symptoms. They all suck. Wouldn't wish them on anyone.

You are overwhelmed, stressed out and your body is messed up.

I am praying for you to find the way around all this.

If you haven't checked out my latest post in A SIMPLE FORMULA FOR CHANGING YOUR FUTURE, please take a look. I had you, and well, all of us in mind, when I wrote those words.

It's the only way around our far too many losses in far too short a period of time.

GROUP HUG, EVERYONE!

We must keep moving forward. Onward and upward. Which takes a hell of a lot of effort, I know.

Once in the chemo room days (10 yrs of them for me) the social worker sensed I wasn't myself. I am usually sunshiney, as you are Denise! Apparently, my glow was rather tarnished.

She came over to me, brought a chair up beside me and asked me what was going on.

I stammered. Clueless. I responding, I realized that not only my dearest friend on the planet, Sue, had passed on, but this one and that and oh that one too. My chemo mate for 5 yrs, who sat beside me every wk, who I talked to and e'd and went to dinner with as both our husbands always accompanied us and were there to support one another as caregivers.

The social worker suggested that I write each person's name down and then touch each name, close my eyes and think of them. That I take a few moments to send them my love, which I did at length, and then to send them my blessings and prayers for them.

When I got home, I made my list. To my amazement, there were over 20 names!!!!!!

That alone shook me, but also served to get me out of my funk, which I hadn't fuller realized I had sunken into.

One by one, I did as she suggested. And it was an amazingly gratifying experience. I felt very connected to each one for the few minutes I spent with them. I had a form of closure, sending my love and offering my blessings and prayers. I felt they were with me! Truly! That they heard me. That my words were heard.

You may want to try that out. May it help bring your joy and serenity back. And may your lousy symptoms lessen with each hour of each day, NEDdy!

I love you.

ANDI