Author Topic: Now, even more confused ... and in tears....  (Read 46275 times)

okiesandy

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Re: Now, even more confused ... and in tears....
« Reply #60 on: March 07, 2006, 09:49:57 am »
Phyllis,

I would rather go to Paris. Will in the fall or early next spring. Never bought shoes in Paris. Last time I was there they were just coming out with the long pointed toe shoes. Thought they would never go over here. Can't go over with me, I have big feet.

 I have never been to Boston. If they have shoes, sales and a casino, I am all for it. Pamper your self and take a week off. Your boss will not want you back if you are still glowing and foaming. He/she will never know you are pampering yourself.

Won a little on the slots...my reward for being a good girl during CK. Hey, seven pairs of shoes in two days is not bad.

Have you set a date for the CK yet?  You are going to do great. You need me in Boston to hold your hand and help you shop and go to the casino I'll be there. (;).

Sandy
Cyberknife 1/2006
Clinton Medbery III & Mary K. Gumerlock
St Anthony's Hospital
Oklahoma City, OK
Name of Tumor: Ivan (may he rest in peace)

ppearl214

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Re: Now, even more confused ... and in tears....
« Reply #61 on: March 07, 2006, 12:58:23 pm »
Sandy, you rawk! Thank you!   Yep, those pointy toed shoes are awesome (did get me a pair last Sept in London!) but the french fashions.. gotta have it. Ok, shoe shopping, slots and lunch during um.... "treatment" week sounds great to me! :)

I'm 98% sure of the CK.  Been talking to Dr. Medbury as well and still owe him drinks for the heads up on CK that he has given me!  Will still meet with BW re: Novalis so I'm not ruling out anything and trying to remain open minded, but for me... based on all data and info re: my case, CK is looking the way to go.

Sandy, you are on!  :)

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 #62 on: March 08, 2006, 02:52:22 pm »
Phyl - Good luck tomorrow!

Hugs to you!
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

ppearl214

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Re: Now, even more confused ... and in tears....
« Reply #63 on: March 08, 2006, 04:16:22 pm »
You rawk hun! Thank you! :-*

Hearing test at 11:15am, clinic meeting with neuro-oncology team at 1pm. They will discuss Novalis with me... but... but... I got word through my loverly grapevine today that .....hmmmmmmm.. for those of you interested or researching... Brigham Woman's has a Cyberknife machine on the purchasing books.  FYI.

Huggles back atcha matti!
xoxo
Phyl

Phyl - Good luck tomorrow!

Hugs to you!
matti
"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 #64 on: March 08, 2006, 04:27:00 pm »
Go get Phyl,

Pleased to hear that even with a little growth, CK is available.

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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ppearl214

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Re: Now, even more confused ... and in tears....
« Reply #65 on: March 08, 2006, 09:08:47 pm »
Thanks Larry. Yep, there was some more growth (seems pretty rapid to be based on the annual avg's quoted to me) but hey, I'm ready to rock and roll and it's time. I'm mentally (I think...) prepped but just ready to do something about this and get it overwith.

Decision time this weekend.  Anyone gamblers around here? (pffffft, silly question, eh?)

Ok, place your bets on which treatment I will do?  Now, granted, we have pretty well ruled out microsurgery, but as for radio-surgery, will it be:

1.  Proton
2.  GK
3.  CK
4. Novalis
5. continued wait and hold
6. Say screw it and just go drinking

Phyl
"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 #66 on: March 08, 2006, 09:42:26 pm »
I reckon in this order.

6, 7, 8, 9.

I take it that 7-9 will be along the same lines as 6. Sounds much better that the other options.

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 #67 on: March 09, 2006, 07:59:30 am »
I'm with Larry..somehow I'm thinking 6 will be first  lol

when you come to maybe 3  lol

If I leave now I might be able to join you for happy hour  lol ;D

matti

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Re: Now, even more confused ... and in tears....
« Reply #68 on: March 10, 2006, 08:19:40 pm »
Phyl - Was hoping you would be checking in to update us, but I know you have alot on your plate right now. Hope it all went well yesterday. We're thinking about you!

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 #69 on: March 10, 2006, 08:39:25 pm »
Yeah matti, Phyl's been real quiet the last few days...do you think she started with #6 and forgot what number was next? 

Phyl please know we're all here for you when you're ready for us!

Put down the cheeky bloke!

ppearl214

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Re: Now, even more confused ... and in tears....
« Reply #70 on: March 10, 2006, 10:28:01 pm »
Hi all,

sorry if any of you were or have been worried about me. As you note here, just lots on my mind and really, REALLy trying to weigh things out.

UPDATE:

Had my hearing test done yesterday (my 6-month follow up from my baseline done last Sept).  AN (left) ear hearing is diminishing again, losing another 2 decibels.  Has now dropped below the bottom of the "normal" level. Oh, well. Also starting to experience more symptoms, especially the "vertigo"... mild/tolerable but noticeable.

Well, I did meet with Brigham Woman's Radio-Oncology dept yesterday.  It was, shall I say, an interesting appt. I commend them over there for the care that they provide and they're genuine concern with their patients. I was VERY impressed with who they are and what they do and what they provide. What left me feeling weird was the conversation with the Director of Radio-Oncology.  A wonderful man, truly knows his stuff. He was trying to convince me that "conventional radio-therapy", and that the 27-day treatments would be good to save my hearing.  Needless to say, I had to share with him my lifestyle issues/concerns. He then said he could do a 5-day course of treatment on me.  He did say that micro-surgery should not be done on me (as did my primary physican, my *OMG!* neurosurgeon, 2 radio-oncologists and my gut).  I admire what they have done in the world of LINAC treatments (as it originated with them), we discussed "accuracy" of the Novalis vs. other radio-surgery treatments, etc.  A good 2 hrs spent there with interesting discussion.

After my appt, I then stopped upstairs at my neurosurgeon's office. Left a message to have her call me (haven't heard anything yet but I know she's been busy). Also put in a call to my primary care physician who has referred me to the best of the best in Boston.  Did speak to her tonight and she let me bounce a few things off of her.  She's VERY supportive and understands my concerns. She certainly did help me with this final decision.

Everyone I have met with has confirmed, also, it's time to treat. No more wait and hold.

So, as I shared with one or 2 of you here, when I have these kind of stresses or decisions in my life to make, I get quiet.  So, thanks for understanding during this "quiet" time for me.

DECISION:

Yes, the final decision has been made.  So, do I tell you now or let you all continue to place your bets?  Option #6 is a given, as well as 7, 8 and 9.    Hmmmmmmmmmmm....

ooops, time to walk the dog..... ;)

« Last Edit: March 10, 2006, 10:29:39 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 #71 on: March 11, 2006, 07:25:54 am »
I'm all for 6...not sure about 7,8 and 9 since we have clashing handcuffs  lol

Just know we're here to support whatever decision you make! 


ppearl214

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Re: Now, even more confused ... and in tears....
« Reply #72 on: March 13, 2006, 09:13:49 am »
I just wanted to say thank you to EVERYONE on this board... for hugs, support, giggles, shoulders, etc.

I will be having the Cyberknife done at Beth Israel, week of April 3, 5 doses.  After ALL the research, appts, talking to folks, etc, I made my decision last Friday, I'm at peace with my decision and I'm ready to rock and roll! :)  And, for those of you that chose #6 (and subsequent numbers thereafter), you all are winners!  Belvedere Martini, double, straight up, shaken/not stirred, extra olives anyone? :)


Truly, thank you all for ALL the support. Let's get this baby zapped and time to plan France! :)

xoxoxo to you all.
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 #73 on: March 13, 2006, 10:22:16 am »
Ohh that drink sounds so james bondish...will sean connery show up for one?  If so count me in! 

Know we're here for you!  Heck matti and I will even come stay with you think you can tolerate the antics?  lol


matti

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Re: Now, even more confused ... and in tears....
« Reply #74 on: March 13, 2006, 03:16:57 pm »
Phyl - I am sure you are feeling a great sense of relief and a whole lot of exhuastion. It is  such a roller coaster ride, full of emotions and decisions. You know we are all here for you!

Yes! Batty and I would love to come stay with you. I hope you like reality tv, cause we sure do! Oh! and we really couldn't/shouldn't drive you anywhere during the pm hours. We"ll bring lots of treats for beanie.

Hugs to you!
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