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DebG
Pick a cause & stand up for it
Member since 5/05 18602 total posts
Name:
The cure IS worse!
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I'm home! and back online! DebG update
hehe..did ya miss me?
Anyway, had a nice time up in Boston! Got to spend lots of quality time with friends and family, which is always soo nice.
Went to Dana Farber (which I personally think is the highest I can go...BRILLANCE! My doc there is a pioneer in the ACC field which is great, because not so many cases like mine...plus comeon, it's affiliated with Harvard, gotta be some smartypants in the bunch, lol) and met with a different oncologosit and a different head and neck surgeon (well different from the ones in FL, I have met with these two particular doctors about my case before though).
Anyway....long story short. Second Opinion docs don't agree with the first opinion I got AT ALL! NOT EVEN CLOSE! So no surgery happened or is happening on me soon.
I am more confused than ever and have a LOT to figure out.
A few points from the visit
Got yelled at again because of weight/nutrition. In fact, got yelled at three times.
The doc was impressed with how much spunk I had
Also impressed I was able to make the trip
Impressed at what he saw on my MRI
More impressed at what he saw when he stuck the camera up my nose
Believes I have fought this almost better than anyone could have expected and is impressed that I was able to make it through the rediculously hard tratment regiment that was set up for me.
The docs did say that think we got a lot of the cancer and what's left is one of three things:
A. scar tissue
b. dead cells
c. live cancer
I got a little afraid when he said C, but he said let's just keep looking at them and see what happens. The might be beat up so bad that they are in no oshape to move or reproduce (I CAN ONLY HOPE!)
Sadly, he did tell me that I will probably live with my current level of pain for the rest of my life.
Considering some days I can't even get myself out of bed, that was hard to hear.
Soooo some good there, some not so good but hey...like I say...the news could always be worse (as in, I am sorry Debg, there is nothing more we can do for you....my BIG fear)
Missed you all 
eta
few clarifications
no surgery...right now.
He wants to wait 4-6 months and see if the swelling in my head goes down.
Message edited 4/2/2007 11:19:25 AM.
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Posted 4/1/07 10:32 PM  |
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rose825
Best Friends
Member since 6/05 10228 total posts
Name:
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Re: I'm home! and back online! DebG update
definately missed you and have been waiting for updates!!!
Sounds like overall it was a pretty good response
Hopefully, you can get some good pain meds.
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| Posted 4/1/07 10:35 PM |
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Jesaroo
is not the girl you knew
Member since 5/05 14266 total posts
Name:
Jes
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Re: I'm home! and back online! DebG update
Ok well let's focus on the good. news. That is definatly some good things you heard today!!!!!!
Noq, when will they know if its A, B or C?
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| Posted 4/1/07 10:36 PM |
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CunningOne
***
Member since 5/05 26975 total posts
Name:
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Re: I'm home! and back online! DebG update
Sounds very promising. I am glad that you didn't hear there is nothing more they can do. You are so strong, continue to stay so!
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| Posted 4/1/07 10:36 PM |
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LI2VA
Love my life!!
Member since 11/05 3125 total posts
Name:
Melissa
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Re: I'm home! and back online! DebG update
That's wonderfully positive news.
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| Posted 4/1/07 10:38 PM |
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Goldi0218
My miracles!
Member since 12/05 23902 total posts
Name:
Leslie
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Re: I'm home! and back online! DebG update
Deb your spirit continues to amaze me. I think you have some promising news there and I hope you get the answers you are looking for!
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| Posted 4/1/07 10:38 PM |
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Jax430
Hi!
Member since 5/05 18919 total posts
Name:
Jackie
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Re: I'm home! and back online! DebG update
Deb, I've been thinking about you and I'm so glad to have an update. I would imagine that it's quite confusing and a little disconcerting to have two teams of doctors giving such different opinions. However, I am so glad to hear that they think that they got most of the cancer. You are one strong woman.
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| Posted 4/1/07 10:39 PM |
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dm24angel
Happiness
Member since 5/05 34581 total posts
Name:
Donna
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Re: I'm home! and back online! DebG update
so glad your back and Thanks for the long update, Im glad to hear most of it and glad to know whats going on with you.
Pain wise....what is exactly causing all the pain and what about pain meds long term?
You sound very upbeat in your post and Im SOOO happy to hear that 
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| Posted 4/1/07 10:39 PM |
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randella
Love my little man
Member since 8/05 16290 total posts
Name:
Randi
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Re: I'm home! and back online! DebG update
glad you had a good trip-- sounds like you have a lot of great medical minds on your side!
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| Posted 4/1/07 10:40 PM |
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aliasPook
Blessed x 3
Member since 6/05 2460 total posts
Name:
Laurie
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Re: I'm home! and back online! DebG update
You amaze me! Glad you were happy with the doctors there...
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| Posted 4/1/07 10:40 PM |
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MrsERod
Praying for Everyone.
Member since 5/05 26170 total posts
Name:
MrsERod™®
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Re: I'm home! and back online! DebG update
hey mama!!!!! soo not surprised the doc was taken by your level of 'spunk' 
Glad you're back home safe and sound!
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| Posted 4/1/07 10:41 PM |
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CHRISTINEL
My lil Princess... ;)
Member since 7/06 1590 total posts
Name:
Christine
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Re: I'm home! and back online! DebG update
Glad you are home safe and sound.
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| Posted 4/1/07 10:42 PM |
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MelToddJulia
Love my Family!
Member since 7/05 29064 total posts
Name:
Mel
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Re: I'm home! and back online! DebG update
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| Posted 4/1/07 10:48 PM |
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DebG
Pick a cause & stand up for it
Member since 5/05 18602 total posts
Name:
The cure IS worse!
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Re: I'm home! and back online! DebG update
Posted by ThusSpokeLaLolita
Noq, when will they know if its A, B or C?
Quite possibly, NEVER  
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| Posted 4/1/07 10:51 PM |
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Stefanie
♥
Member since 5/05 23599 total posts
Name:
Stefanie
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Re: I'm home! and back online! DebG update
That's wonderful news Deb!!
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| Posted 4/1/07 10:53 PM |
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DebG
Pick a cause & stand up for it
Member since 5/05 18602 total posts
Name:
The cure IS worse!
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Re: I'm home! and back online! DebG update
Posted by dm24angel
Pain wise....what is exactly causing all the pain and what about pain meds long term?
the pain is that the cancer was HUGE...it's all still there pushing on things that shouldn't be getting pushed on, on top of that, the tumor broke my sinus cavity (right thru the bone  )
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| Posted 4/1/07 10:53 PM |
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MrsERod
Praying for Everyone.
Member since 5/05 26170 total posts
Name:
MrsERod™®
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Re: I'm home! and back online! DebG update
what about surgery to replace the bone? is that even a possibility? 
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| Posted 4/1/07 10:56 PM |
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monkeybride
My Everything
Member since 5/05 20541 total posts
Name:
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Re: I'm home! and back online! DebG update
Glad that you're back and that overall you got a lot of good news. I'm sorry about the pain diagnosis but hopefully they can manage you on meds. I'll still be praying that you beat it all. Pain and everything.
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| Posted 4/1/07 10:58 PM |
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DebG
Pick a cause & stand up for it
Member since 5/05 18602 total posts
Name:
The cure IS worse!
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Re: I'm home! and back online! DebG update
Posted by MrsERod
what about surgery to replace the bone? is that even a possibility?
At this current time, the reward is not worth the risk.
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| Posted 4/1/07 10:58 PM |
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Moehick
Ready for the sun!
Member since 5/05 30339 total posts
Name:
Properly perfect™
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Re: I'm home! and back online! DebG update
Deb so glad to hear you are back and in good spirits!
Some really really good news there...and as for the pain...lets hope and  that it lessens or goes away completely...you never know
Love ya lots
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| Posted 4/1/07 10:59 PM |
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nrthshgrl
It goes fast. Pay attention.
Member since 7/05 57538 total posts
Name:
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Re: I'm home! and back online! DebG update
Woo hoo! Going from INOPERABLE to not necessary to operate is HUGE!!!!!!!!
Praying for a lifetime of A&B for you!! And that you go from "you need to live in your current level of pain" to "we have an idea..."
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| Posted 4/1/07 11:03 PM |
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evnme
My little lamb
Member since 8/05 12633 total posts
Name:
aka momma2b
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Re: I'm home! and back online! DebG update
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| Posted 4/1/07 11:04 PM |
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Gertyrae
Peace out Homies!
Member since 5/05 20046 total posts
Name:
Gerty ®
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Re: I'm home! and back online! DebG update
Wow...it must have been nice to get some good news! You have been fighting such a great fight that you deserved to get some upbeat news.
Hopefully, the final answer is A and/or B and that the pain subsides very soon!!!
Keep up that upbeat attitude, chickie!!!!!
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| Posted 4/1/07 11:07 PM |
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dm24angel
Happiness
Member since 5/05 34581 total posts
Name:
Donna
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Re: I'm home! and back online! DebG update
Posted by DebG
Posted by dm24angel
Pain wise....what is exactly causing all the pain and what about pain meds long term?
the pain is that the cancer was HUGE...it's all still there pushing on things that shouldn't be getting pushed on, on top of that, the tumor broke my sinus cavity (right thru the bone )
Thats what I thought....
Thats just horrible and I hope new med options become available for you.
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| Posted 4/1/07 11:07 PM |
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Tumbalina
Better than the news!
Member since 2/06 2840 total posts
Name:
Angela
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Re: I'm home! and back online! DebG update
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| Posted 4/1/07 11:17 PM |
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