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Emergency mri &%#@$!!
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! |
Re: Emergency mri &%#@$!!
Praying, praying, praying. Please keep us posted ASAP. Thanks.
Love, Penny |
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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. |
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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
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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 |
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Oh, Denise...you do not need this aggravation. No no no. Sending positive energy your way.
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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 |
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Oh Denise! Crossing eyes, fingers and toes for you - will be waiting to hear your news.
Pam. XOXO! |
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I hate cancer too!
NEDenise I am sending everything at you tonight esp hugs and parayers xx |
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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 |
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Praying!!! Sending all the positive healing thoughts I can! And hugs.
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Sending healing thoughts to you. Awaiting good results.
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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. |
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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 |
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Sending you every ounce of every good vibe I have.
I really really really hate cancer to And I really really really love you |
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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.
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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 |
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Prayers for you, Denise. With all the strength I can muster, you have my prayers.
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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 |
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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. |
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I hate that you are going through this. Hugs and prayers for you and your family.
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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! |
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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 |
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Dearest Denise...sending you HUGE HUGS and praying for strength, peace and healing!!
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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 |
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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 |
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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 |
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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.
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Aloha - you better get in practice saying that Denise! Good to hear your update, and have a restful, peaceful weekend.
Love Marie x |
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So glad to hear the news. Deep breath and enjoy the weekend!
Xoxo |
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Oh Denise, I'm praying so hard and often for you and great MRI results. I envision you doing the Hula with your family!
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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
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Didn't get to read the thread until today. Glad you are going on your trip as planned. Have a good one.
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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.....
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Praise God!! So happy to hear and just know we will continue to pray for healing and answers and a wonderful trip to boot!!
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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 |
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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. |
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NED,
PTL!!!! woot, woot ;-) |
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Yippee skippy!
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