Author Topic: Now, even more confused ... and in tears....  (Read 46256 times)

ppearl214

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Re: Now, even more confused ... and in tears....
« Reply #45 on: March 03, 2006, 01:02:55 pm »
UPDATE:

Ok, nerves are FINALLY beginning to set in and I don't think a Gray Goose martini, straight up, shaken/not stirred, extra olives is going to help. Reality setting in that this time next week, final decision will be made and course of action will be mapped out.

This coming Monday, meet with Beth Israel CyberKnife team.  My best friend is coming with me and Mark, can't thank you enough for the encouragement and questions I didn't think of until I spoke to you.   The moral support of everyone here is fantastic  and I KNOW that I wouldn't be able to get through all this without you.

Next Thursday, next audiology test at Brigham Womans in the morning, meet with neuro-oncology team at 1pm. Now, they have Novalis (ehhhhhhhhhhhhhhhhh..... Dr. Claus and I still have our issues with it as it pertains to me), but will still meet with them to hear them out and TRY to find out what new "machine" they have coming.  Having difficult time trying to find out.

Been binging on chocolate (my poor waistline... I lost it... anyone find it for me???).  Hard to focus at work but still harrassing my Europe/Middle East customers just enough for a good laugh.  My family have been WAY too supportive (I think they forget I'm an adult and actually able to think for myself, even with a growth or 2 in my brain!) but they really do rock!

So, this weekend... binge eating, working out with my personal trainer (who is also a physical therapist, so will discuss with him what we need to do to keep my legs strong, blah blah blah... he's such a sadist!), and trying to keep nerves intact.

So, with that, I just want to wish everyone TGIF and a terrific weekend... and if you see an emotional, long haired, green eyed woman with a 1/2 Boston accent-1/2 Southern accent roaming around here looking blank faced... just nudge me along... I'll be fine! :)

Have a great weekend all!

Phyllis
« Last Edit: March 03, 2006, 01:06:14 pm by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Battyp

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Re: Now, even more confused ... and in tears....
« Reply #46 on: March 03, 2006, 04:27:54 pm »
Phyl,
I just wanted to tell you I just love your sense of humor and your positive attitude!  Glad things are starting to work out on your decision making progress!

ppearl214

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Re: Now, even more confused ... and in tears....
« Reply #47 on: March 03, 2006, 06:02:40 pm »
*slips batty-one a $100*

thanks for the nice words... the money I owe you... shhhhhhhhhhhhhhhhhh......

(thanks hun!)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Larry

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Re: Now, even more confused ... and in tears....
« Reply #48 on: March 04, 2006, 02:28:20 am »
Phyl,

As we say down under  "she'll be right mate". Just keep thinking of all the fun times you are going to have after all this is over and lets not forget the geiger counter at work. perhaps you could take it in after you see the guys on Monday.

Anyway, keep laughing. Just on that note. I actually listened to a woman who specialises in "laughter" a wee while a go. She says that when you are down in the dumps, no matter where you are or what you are doing, think of something really funny that has happenned to you and break out into forced laughter. That will get you going and peobably eberyone else around you will start smiling and wondering whats this woman on about? Just keep laughing.

Actually, I could picture you and Cakes walking down the street laughing like a couple of mad women having everyone else in fits.

Go get 'em.


Larry
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
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Battyp

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Re: Now, even more confused ... and in tears....
« Reply #49 on: March 04, 2006, 08:58:55 am »
Larry where in australia?


Larry

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Re: Now, even more confused ... and in tears....
« Reply #50 on: March 04, 2006, 08:32:02 pm »
I was born and bred in Melbourne but have been living in Sydney for the last 6 years. It's a great place, climate would be similar to Florida. Autum (fall) and Spring has temperatures around mid 20's, winter around 20 but does get cold at night and summer is hot - in the 30's. All measured in celcius. To convert double and add 32.

Larry
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Battyp

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Re: Now, even more confused ... and in tears....
« Reply #51 on: March 04, 2006, 09:26:21 pm »
Larry where your ears burning?  Phly and I were just talking about finding me a man in melbourne austraila  lol  I'm from melbourne fl when I'm signed into yahoo I get some strange messages from down under lol  I bet it's pretty there plus you guys have roos  lol

Larry

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Re: Now, even more confused ... and in tears....
« Reply #52 on: March 05, 2006, 12:23:45 am »
Sorry gals, this down under guy is taken. Mind you, I'm damaged goods now anyway - old age and teenage girls have aged this battle weary body to a pulp.

We do have kangaroos but they are considered a pest. They are well marketed as a tourist thing but the farmers hate them.

2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Battyp

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Re: Now, even more confused ... and in tears....
« Reply #53 on: March 05, 2006, 12:33:42 pm »
Funny you should say "damaged goods"  thats how I feel.  Surely you have friends down under that aren't taken?  lol  Teenage girls?  OMGoodness!  You are battle weary  lol  I have a teenage boy he's bad enough but the girls seem worse. 

How can something so cute be considered a pest?  Actually saw a panda attack a man on tv yesterday...rotten little buggers  ;D

My niece named my dog "joey" as she thought he resemebled a baby kanagroo...he's a lasa aphsa  lol

ppearl214

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Re: Now, even more confused ... and in tears....
« Reply #54 on: March 05, 2006, 11:42:03 pm »
gawd, willl you 2 get a room somewhere!?!?!? ;)

Larry, thank you hun for the kind words.  And yes, aussie ears must have been burning cuz we were certainly talking about the land down under as I have numerous dear friends in Sydney area.  Trying to get there sooner than later (in my winter/your summer, of course!)

batti-one... you are priceless my dear.  And thank you so so so so so very much for all you have shared with me. :)


Ok, I'm now officially a nervous wreck. 12:40am Sunday night and my CK consult is tomorrow. My best friend is accompanying me to the appt (my dad said he would call ship-to-shore tomorrow... told him to have a few drinks for me instead).  My cheeky bloke is trying to give me a LOT of support and my dog (my pug, Beanie) has been curled up with me most of the weekend. I think she senses something is up.

Will check in with you all tomorrow to let you know what they say. And to top things, I got a zit!  A damn zit!  Can you tell my nerves are getting the best of me?

Will check back in tomorrow post-consult. You all have a great day! :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

matti

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Re: Now, even more confused ... and in tears....
« Reply #55 on: March 06, 2006, 11:00:44 am »
phyl - We're all with you today.  I Know how you are feeling, deep breaths... 

Hey Beanie, take good care of mommy!

sending you a hug!
matti
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

Battyp

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Re: Now, even more confused ... and in tears....
« Reply #56 on: March 06, 2006, 11:37:35 am »
Phy,
  You know we're all rooting for you today!  Remember it's good news Monday! 

M

ppearl214

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Re: Now, even more confused ... and in tears....
« Reply #57 on: March 06, 2006, 06:35:47 pm »
UPDATE:

Ok, where to start?

Met with CK team at BI. OMG, I am impressed!  SUPER impressed is more like it.

Well, radiologist read my films and found the report states my tumor at wrong size. It's slightly larger than the report BUT... it grew lenghwise, not height!  There is room in the IAC for the nerve and tumor to swell for radiosurgery! He then tested me for hearing, balance (gawd, I failed that miserably... Kate, gawd bless her, was ready to jump up and do the heel/toe test for me. I couldn't do one step), reflexes, etc.  He sat me down and started to talk to me about options (micorsurgery vs. radiosurgery). Well, needless to say, I blew him away with my research! :)  (Can't thank you all enough for all you have shared with me, as well as my NS and primary care dr).  So, he saw I did my homework and I said, " forget all that, talk to me about CK".  He gave me my hearing retention chances, facial nerve, course of treatments (recommend 5 consecutive days and that's it) and discussed immediate and long term affects (permanent risks and temporary affects).  Then, met with Neuro-oncologist. He started the conversation the same way as the previous dr and I said the same "cut to the chase here, talk to me about CK". He was rather impressed I did my homework as well.

So, all in all, they both feel I'm a perfect candidate for CK, that it should not wait and since the tumor has room to swell and is still small enough, they see it as a VERY viable option for me.

So, I meet with BW on Thursday to see about Novalis and will hear them out.

BTW, BI can start my treatments in the next 2-3 weeks. Doubt my cheeky bloke would be here for it  (should that be my final decision) but hey, can't have everything.

Will further update after this week's appt at BW.

Hoping you all are having a good day today and feeling ok. :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Battyp

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Re: Now, even more confused ... and in tears....
« Reply #58 on: March 06, 2006, 06:46:40 pm »
Yeah!  I'm thinking cheeky bloke can get after treatment when you'll really need a lift!  So tell him to get busy working on it!

matti

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Re: Now, even more confused ... and in tears....
« Reply #59 on: March 06, 2006, 08:22:35 pm »
Glad to hear it all went so well for you Phyl.

 My thoughts have been with you all day!

You were impressed with them, and without a doubt, they were impressed with you. Way to go!

Keeping my fingers, toes and eyes crossed that your cheeky bloke can make it here. Do you want Battyprincess and I to call him?  ;)

Take care and thanks for the update
matti







 




3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50