ANA Discussion Forum
AN Community => AN Community => Topic started by: ppearl214 on November 10, 2010, 05:37:01 am
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Hi all
Ok, this is NOT to bring praise and stuff..... but only as an FYI in case any of you see this and say "HEY! I KNOW her!" while watching your tv news.........
I've been tapped to do a human-interest health update story re: my AN and CK journey. This is being taped tomorrow at Beth Israel in Boston where I had my CK treatment for my AN almost 5 years ago. My radiation-onc, Dr Anand Mahadevan and I will be interviewed for this story, which will then be fed out to *gulp* over 200 stations nationwide for potential pick up of the story (they can capture the story if they want to air it), including the networks here (ie: ABC, NBC, CBS, etc). The ANA is already aware of this and a part of my interview will cover my pre-treatment research, which includes how I came to these forums seeking out treatment options..... so, the forums are going to be publicized as well.
So, this is to give you a heads-up, in case you are drinking your morning coffee and see my big nose flash across your tv screens (I feel bad for those that have big manly-man big screen tv's with my nose taking up most of the space). Yes, it will be me. Unsure of airing date but once they edit the piece and feed it out, don't know where it may air. It could possibly be picked up in areas that offer CK (ie: N. CA, OKC, Boston, Atlanta, etc) so just letting you know.
The goal of me doing this is the hope that it brings info to those possibly seeking out options for treatment of AN's and nothing more. Seems I'm being tapped for these things (ie: see my thread about guest-speaker spot in Feb in San Fran) and as I told the ANA, if this helps to bring a face to AN's, then I'm all for it. AN's need to be brought to the forefront and public awareness to help our cause works for me, thus, my reason for doing this.
... and yes, I even "grew new blonde hair" for the occassion, granted, it cost me $155 to grow the blonde hairs.
I do this for you all.... and for those down the road that also have this diagnosis....... so, hoping this helps the cause.
Phyl
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Phyl that's awesome!! I hope I can view this in NY. Congrats! Joan
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Another movie star in our midst!!! ;D
I should have gotten your autograph last year - before you were famous!
Congratulations and I know it will be awesome! I hope I get to see it from here!
Lori
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ohhhh...how exciting!! let us know where & when we can see it - hope it is on the web as i do't watch much news/tv
love ya!
k ;D
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Ooooooh, I love rubbing elbows with the rich and famous! :o
Like Kay, I hope it is on the web as that is where I get most of my news. I can only take the noise of TV for a limited amount of time.
Smile pretty and if you know beforehand when it will be airing, we'll set the DVR to record it.
Thanks again for the huge contributions you continue to make in support of acoustic neuroma patients!
Clarice
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Go Phyl !!!!!!! Please post the story if you can can't wait to see your beautiful blonde locks ;D
Break a leg!
Liz
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Phyl ~
Thanks for the heads-up on your upcoming AN-related TV interview. I admire your willingness to put yourself out there to further awareness of acoustic neuroma and the ANA, (especially, the discussion forums). I'm far less photogenic than you, Phyl (I had a face for radio) so I'm happy to see you and those who can do these kinds of highly public presentations well, make the effort for AN awareness. Kudos to you (and the doctor)!
I second Liz's suggestion that you try to post the video, photos, transcript or a link once the interview has been completed. We're all anxious to see it (and your newly-grown blond locks).
Jim
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Well, alright! Sure hope I catch it here in Atl! If not, hope we can see it via the web somehow! Very cool!
And, when might you be heading down here? Holidays, maybe? Make sure you let me know :)
Cindy
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You are a rock star, Phyl. Of course, some of us knew that already! ;)
Debbi
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Rock on, Phyl! We will all bask in your reflected glory...and beam right back at you! :D :D
Priscilla
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As someone has been known to say.....You rawk Phyl....can't wait to see it.
Patrick
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Hi all
There is a website for the group doing the taping.... as soon as I know it's out there, will advise.
Phyl
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Phyl .....
Will keep checking this thread for the website info ...... Did you finish the taping yesterday or is it a several day thing? Even though you have done this before, it has to be exhausting to "be on one's best" for such an occasion.
Clarice
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Why am I so very not surprised that you're being asked to do this?? :D
You're a great face to put to an AN awareness program and I'm so thrilled that you're doing this! Like everyone else, I anxiously await updates of where we can see this awesome story!
(((huggles)))
Katie
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Phyl:
Thanks for all that you do to spread AN awareness. I'm looking forward to seeing this on tv.
Syl
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I'll second Patrick...YOU RAWK!
Huggles,
Brenda
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Hopefully this can lead to the beginning of the end of the mindset that the best remedy for small ANs is the brutal surgery that has left so many of us with the life-altering side-effects of chronic head and neck pain. Will we be able to view it on Youtube?
You go you Poster Girl!
hugs and big sloppy kisses on your forehead!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/skull_sword_through_head_lg_clr.gif)
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Phyl,
Be sure to give us an internet link to a channel that carries it, in case our local station doesn't. Maybe you'll make national news and get an offer for a book or movie deal! You can dream, can't you?
Connie
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You all are too much! Truly! :-* :-* :-*
Quick lowdown..... did the segment today. Probably one of the most profound... and surreal moments ever. I had NO clue we were doing this inside the CK center where I was treated.... tears..... it just hit me.... Almost 5 yrs ago, I walked through those doors in the hopes that my treatment choice would do the trick... and here I was, almost 5 yrs later, walking through those same doors knowing (in my case) that indeed, it did the trick. Then, to really throw me for a loop, they had me demonstrate the begnnings of a treatment! Had me lay on the treatment table while the tech was demonstrating what it was to put on a mask with the CK robot next to me. Needless to say, it was "Groundhog Day" all over. Had no clue, got through it and have to say.... didn't think I'd react with the tears the way that I did. Everyone scrambling for tissues for me.... they didn't realize it would impact me in such a way... and I have to say, not in a negative way... truly :) More happy tears knowing that this machine, in my AN journey, paid off and worked. Very surreal, indeed.
Anyway, they did the 1-1 interview with Dr M... they brought us into exam room together and showed what a follow up appt would be... then interviewed me. Of course, I noted the ANA and the forums as part of my "research" process. Heck, they even had me doing some of my knitting...... with pics of me and da bloke surrounding me. Took 2-1/2 hrs total for all of the process to be done... and it has to be edited down to 1:57mins. Go figure, eh? :)
So, they have to go through the edit process, do "scripts" for what the newscasters will read, have the hospital PR and CK PR and me do a final check that it's good to go... and then.... well, it's not 200 stations that it's being fed.... but 300!!!!!!!! :o :o :o
Spoke to the ANA office after, gave them the lowdown and will advise airing dates. Based on all inputs together from all communications (ie: PR companies, producer, etc), there is a good chance this will be picked up by many stations.
300 tv stations?!?! *faints in disbelief!*
Phyl
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Whew! What an emotional wringer! In the name of all of us, thank you, Phyl, for all you do to raise awareness of acoustic neuroma treatments in such a gracious and heart-felt way.
Can hardly wait to say "I know her!!!" 8)
Clarice
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Can't wait! I was always very interested in CK - here is my chance.
Eve
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Damn. I'm away from the Forum for a few days and I miss something like this.
Congrats, Phyl.
Can I have your autograph? ;)
Jan
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autographs? :) funny!
Waiting on word that the final edits/scripts/approvals done, then will let you all know when it's going out. Should be on their website as well. Will keep you updated. Another face/voice (much like Kris in LA) for AN's...... let's hope it helps our cause! :)
Phyl
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:D Phyl,
Eagerly awaiting word of your debut!! Beyond your 15 minutes of fame you will always be a Super Star to all of us here!! Who knew as a result of my AN I'd know a real live celebrity!!! :o
Best always,
Mary (AKA/Grammy Mary) ;D
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Who knew as a result of my AN I'd know a real live celebrity!!! :o
Not quite, m'dear! My military chief emailed me on Friday to see how it felt to be a celeb. Responded back that if I had the paycheck of Anjelina Jolie, then I could respond to his question more appropriately! :D
Waiting to hear when the edits are done.... will keep you all updated.
Phyl
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Hey, Phyl!
I go on vacation, and you end up in the news! Well, I can't wait to see the bit. You are one of, if not THE, best advocate for us ANers.
Best of luck with your debut. What will you wear for the red carpet? ;D
e
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Oh Phyl, this is so freakin' awesome. The airing probably won't make it out west, but then, maybe it will. Maybe you should be on Dr. Oz's show! Doesn't look like we are going to make it on Ophrah's show...so maybe Dr. Oz would be better anyway.
We're so proud.
Sue in Vancouver, WA