Author Topic: ...and .... HERE I AM!!!  (Read 6368 times)

Pascale

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...and .... HERE I AM!!!
« on: September 10, 2008, 11:32:10 pm »
Hello everyone!!!!  ;D

I am here, in Stanford!!  :D

On Monday I met with Dr. Chang and his crew, and they were very nice and took the time to answer all our questions.

Tuesday I had the mask done. The doctor in charge of the mask was in the "halloween" mood and gave me a "pinocchio" nose, saying I will be ready for halloween!!!  ;D :D (I will post the picture once the treatment done, for those who have no clue what I just said  ;)
He was super sweet and funny, all part of the crew.

Today was my first day. I got there at 11:45am for my 12:00pm appointment. After 5 minutes there, one of the doctors informed us the machine had some little glitches but that they were working on it and would give us an update in 15 minutes...  ?????? .. me, as a worrier, I started to think "maybe it's a sign...that I should not do it"...BUT, they got it fixed so quickly that my worries went away.

So anyways, I went it, layed on the table, they put the mask and my heart started pounding so fast. I was completely stress and worry free all this time, but I guess it was only then that I realized "this is not a CT scan or an MRI....it's radiation...there will be radiation going through me head!!"....so yeah, my heart was going off but I knew I was in verry good hands. I asked them to put some Ella Fitzerald, closed my eyes and tried to not think about anything. I fell in and out of sleep and after 40 minutes it was over. Not bad at all!  ;D

After I left, I went home, got something to eat and started to feel very tired. I was feeling a pain in the back of my ear that was very sharp and I guess that is what was making me tired. So I went to bed and slept for 2 hours. Woke up felling a bit better but still felt pain behind my ear....Has any of you felt that? I had no headache, no nausea...only that pain. So we'll see how tomorow will be.

I have a question for all of those who did have treatment with Dr. Chang:

- The day of each treatment, was Dr. Chang or Dr. Gibbs present at the begining to check up and make sure the machine was set correctly as they had asked? Because neither of them showed up during mine...and that made me a bit worried and upset at the same time since they had told me they would be there.... >:(

Anyways, will be sending an email to Dr. Chang asking about this and about this pain behind my ear...

See you all tomorow!  ;D
2.1 x 1.8 x 1.7 cm AN.
CyberKnife treatment completed on 09/12/2008 with Dr. Chang and Dr. Gibbs at Stanford.

:D

Omaschwannoma

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Re: ...and .... HERE I AM!!!
« Reply #1 on: September 11, 2008, 04:10:51 am »
Your description of thoughts while lying on the table made me feel as though I were the one going through it!  I think you are doing the right thing in writing and asking your doctor why he wasn't there and what's up with the "glitches" thing?  This way you will feel you have covered all bases.  As for the ear pain, I'm sure this is all part of the rads treatment and pretty normal, the fact there were "glitches" spoken about though would have anyone questioning this.  Glad you are proactive here, and I'm sure you are feeling normal symptoms post treatment.  Although, Steve will be better informant as he is experienced one! 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

ppearl214

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Re: ...and .... HERE I AM!!!
« Reply #2 on: September 11, 2008, 05:48:06 am »
Pascale,

Congrats on day 1! :)  Brought back memories to me of 2-1/2 yrs ago... and you choose Ella! :)  My first day was Elton John "Goodbye Yellow Brick Road" albumn. So, did you look for the "eye"? :)  Continued wishes to you..... let's get that sucker dead... and listen (as you have) if the fatigue sets in.... napping is well worth it!

Hang tough... we're cheering you on! :)
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Re: ...and .... HERE I AM!!!
« Reply #3 on: September 11, 2008, 05:52:38 am »
Like Arushi, I think Steve or someone else who has been through this will be able to answer your question.

I just wanted to say thanks for the recap of yesterday.  It sounds like things went well and I know you are in good hands with Dr. Chang and his crew - they have an excellent reputation  :)

From what I recall, Steve's mask (he shared his pics with us) was very pinocchio-like and I think his netting was blue.  Phyl's was white though.  So I'm anxious to see what color you got.

Good luck with day 2,

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

sgerrard

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Re: ...and .... HERE I AM!!!
« Reply #4 on: September 11, 2008, 09:07:06 am »
- The day of each treatment, was Dr. Chang or Dr. Gibbs present at the beginning to check up and make sure the machine was set correctly as they had asked?

Chang and Gibbs did most of their work for you on Tuesday, when they developed your treatment plan. After that, it is in the computer, and they just need to make sure that the correct program is loaded for you. I think one or the other stops by to double check that the techs are matching the programs to the patients, but that can be done in about 2 minutes, so you probably won't catch them at it. I think I saw Dr. Gibbs once during my three treatment sessions.

Sounds like Larry made you feel right at home! Just coast through it now, and take it easy for a while. The AN is history.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Mark

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Re: ...and .... HERE I AM!!!
« Reply #5 on: September 11, 2008, 09:34:36 am »
Pascale,

wonderful recap of your first CK day, glad it went well. As Steve said, Dr. Gibbs and Chang's work was in getting the treatment plan set up with the CK team. In my 3 days I never saw Dr. Gibbs and I saw Dr. Chang briefly at the end of day 1. Otherwise my primary contact was Dr.Martin who is no longer there and Larry ( the mask guy and CK operator  :)). As I recall my conversation with Dr. Chang went something along the lines of:

Dr. Chang  "how do you feel?"

Me  "Fine, but that was too easy"

Dr. Chang "I can schedule an OR suite , if you'd rather do surgery" ( laughing)

Me "That's OK, forget I brought it up"  ;D

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

mindyandy

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Re: ...and .... HERE I AM!!!
« Reply #6 on: September 11, 2008, 11:50:20 am »
CONGRATS!!! I'm glad to hear it went fairly smoothly. Good luck on day 2....KEEP US INFORMED!!!
I'll be thinking of you ;)
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

Pascale

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Re: ...and .... HERE I AM!!!
« Reply #7 on: September 11, 2008, 12:33:50 pm »
Hello everyone!!

Tks for the replies.

Ok, so I guess I need to relax and not worry if I don't see Dr, Chang or Dr. Gibbs in the radiation room during my treatments...good to know!

I sent an email to Dr. Chang asking him to be present for the begining of my second treatment, today at 1pm just to make sure everything is setup ok... I think that's asking too much then... :( poor doctor...I'm not the only one in the face of the Earth!!!  :D Well, thanks for all the input...Will be going for my second one in a little bit.

Oh! how about the pain behind the ear? anyone had such thing?

Take care!!
2.1 x 1.8 x 1.7 cm AN.
CyberKnife treatment completed on 09/12/2008 with Dr. Chang and Dr. Gibbs at Stanford.

:D

Pascale

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Re: ...and .... HERE I AM!!!
« Reply #8 on: September 11, 2008, 12:38:25 pm »
PS:

- my mask is blue  ;D

- I did not look for the "eye"  :o ..... I opened my eye at the begining and saw this huge thing moving on top of me and , freaked out as I was, I closed my eyes!! I thought "better have my eyes closed so I don't see the red radiation thing coming at me"...stupid thought...I know heheheheheh. Today I'll try "confronting" it and tell him "you better hit the target right!! "  ;D :D ;) :)

2.1 x 1.8 x 1.7 cm AN.
CyberKnife treatment completed on 09/12/2008 with Dr. Chang and Dr. Gibbs at Stanford.

:D

marystro

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Re: ...and .... HERE I AM!!!
« Reply #9 on: September 11, 2008, 05:02:17 pm »
De ja vu for me...

What you described about laying there and the music brought back memories!

I didn't see the doctors much and I knew that it was in very good hands.  I did see Scott (Dr. Soltyz) at the end.  Scott and us (hubby, son and I) all talked about where to eat afterwards in Palo Alto.  And yes, Larry is your man.  He was so sweet and funny.  I got the "pinnochio" nose also and took the mask home for halloween.

Regarding the pain behind the ear... I did not have that but heard other people got that after treatment.  Not sure if it was immediate or days/months later.  My guess is all these will subside eventually.  Some takes longer.

You shouldn't worry about it.  I know, I know, it's annoying...
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

marystro

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Re: ...and .... HERE I AM!!!
« Reply #10 on: September 11, 2008, 05:11:23 pm »
Hey Pascale,

Call me when you come home.  I am in San Diego.  I think we talked briefly a while back.  Let's get together.

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

mindyandy

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Re: ...and .... HERE I AM!!!
« Reply #11 on: September 12, 2008, 09:48:26 am »
Pascale--
I'm thinking of you. How are you feeling? Talk to me girl..... :)
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

Pascale

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Re: ...and .... HERE I AM!!!
« Reply #12 on: September 12, 2008, 01:12:53 pm »
alright!!!

I'm done!!!  ;D

The day 2 was great, both Dr. Chang and Gibbs were presente, the whole time (says my mom). They are very sweet. Again yesterday I came home, ate and went to bed from 6:30 to 10:30. then woke up, ate again and back to bed until this morning.

Today it was great too. I asked the "machine operator" (  ;) ) to take a picture of me with the mask and stuff, will post it later. Dr. Gibbs and Chang came by at the end to see how everything went and stuff...

So I'm good to go!!! In 6 months I will come back to have the MRI, CT scan and hearing test done here, or, if I change my mind, I'll do them in San Diego...no sure yet.

Anyways, I'll keep on posting anything new!!
Thanks for the support!
Pascale
2.1 x 1.8 x 1.7 cm AN.
CyberKnife treatment completed on 09/12/2008 with Dr. Chang and Dr. Gibbs at Stanford.

:D

Pascale

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Re: ...and .... HERE I AM!!!
« Reply #13 on: September 12, 2008, 01:17:22 pm »
PS:

I now have a SIGNATURE!!!! showing the completion of my treatment! I was soooooooo jealous of those who had it!!!  ;D :D ;) :)

 8)
2.1 x 1.8 x 1.7 cm AN.
CyberKnife treatment completed on 09/12/2008 with Dr. Chang and Dr. Gibbs at Stanford.

:D

sgerrard

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Re: ...and .... HERE I AM!!!
« Reply #14 on: September 12, 2008, 06:57:49 pm »
Yeah, that signature does look pretty sharp, Postie;D

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.