Author Topic: My turn to nuke the alien . . .  (Read 15135 times)

6pick

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My turn to nuke the alien . . .
« on: October 09, 2010, 05:19:34 pm »
My turn to leave for Stanford tomorrow for 5 fun-filled days of alien eradication. I'm scheduled for CK with Drs. Chang and Gibbs. CT scan and mask fitting at 7:15 am Monday morning. Tuesday is a day off, then treatments on Wednesday, Thursday, and Friday. I'm looking forward to my Postie Toastie designation.   ;D

See ya on the other side.

Mark
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

free2be

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Re: My turn to nuke the alien . . .
« Reply #1 on: October 09, 2010, 06:58:10 pm »
Mark,

I was just thinking of you and your upcoming week. Try not to get a cold while you're there; if you can manage that, all will go well. Have some fun and enjoy your stay at the RCI (I assume). We enjoyed it...great coffee! That's important to me :)

Keep us informed.

Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

leapyrtwins

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Re: My turn to nuke the alien . . .
« Reply #2 on: October 09, 2010, 09:56:00 pm »
Good luck, Mark.

Dr. Chang is one of the best.  You are in excellent hands.

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

6pick

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Re: My turn to nuke the alien . . .
« Reply #3 on: October 09, 2010, 10:15:22 pm »
Thanks, Jan, I appreciate your support.

Ooh, Connie - I didn't think to tell you about the excellent coffee at RCI, I'm glad you stayed there and experienced it. I'm a big fan, too. Yes, we're staying there again, and I'm going to ask for extra coffee . . . full bodied, no decaf!

Mark
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

Jim Scott

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Re: My turn to nuke the alien . . .
« Reply #4 on: October 10, 2010, 01:52:04 pm »
Mark ~

I'm sure you'll have a successful CK procedure but prayers will be said for you and positive thoughts are coming your way.  See you as a 'postie-toastie.:)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

6pick

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Re: My turn to nuke the alien . . .
« Reply #5 on: October 10, 2010, 07:41:50 pm »
Thanks for the welcomed prayers, my intention is to keep you post-ed   8)

I'm settled in at the hotel, pouring a glass of wine. My wife asked me if I was stressed. I am not.

I thought out loud, though, that I notice some of the other AN posters seem to be stressed "going in" and it makes me wonder, am I missing something? Should I be stressed? (Her response was supportive of my having been keeping busy with no time to think about it and, therefore, whether I am missing something or not, it doesn't matter.)

For me, none of the choices are clear. But I made a choice and it's time to get on with it. Am I worried about the aftermath? I recognize that there will be an aftermath. But I am happy to be here taking action against this intruder. I am hopeful that the tinnitus will disappear (although I realize that in some it doesn't and may even increase), I am hopeful the occasional pain (AN side headaches) will disappear. But my focus it to be confident that everything will turn out perfectly. I am a very lucky man: the tumor is benign, I have one very good ear, I have some of the very best doctors helping me, I have so many people supporting me on this forum, I have so much going for me. Stressed? No, excited! Let's get on with it!

Mark
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

moe

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Re: My turn to nuke the alien . . .
« Reply #6 on: October 10, 2010, 08:17:14 pm »
Great attitude, Mark!
Good luck tomorrow. Everything will hopefully go as planned and you'll be nuked before you know it, and on your way. (x5)
let us know how things go!
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

nanramone

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Re: My turn to nuke the alien . . .
« Reply #7 on: October 10, 2010, 08:59:51 pm »
Good luck!

leapyrtwins

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Re: My turn to nuke the alien . . .
« Reply #8 on: October 11, 2010, 07:07:00 am »
Mark -

I think stress depends on the individual.  I didn't have CK, but I was very calm the day of my surgery and all the days leading up to it once I made my decision. 

IMO when you have a game plan and are confident of your choice and your doctors, a whole lot of the burden is taken off your shoulders.

I'm sure things will go well today.

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

Doc

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Re: My turn to nuke the alien . . .
« Reply #9 on: October 11, 2010, 10:53:39 am »
Been there done that....piece of "irradiated" cake...nothing to it. I still have my mask hanging from the wall here in my office. Looks like that water creature from the movie, Abyss...pretty cool!

Best of Luck Mark!

Take Care!
  ;)
Doc
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

6pick

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Re: My turn to nuke the alien . . .
« Reply #10 on: October 11, 2010, 04:51:20 pm »
Hey thanks, Maureen, nanamone, Jan, and Doc (I get to keep my mask? Cool. I've got just the place . . .).

Now:
Greetings from Palo Alto . . . well actually, I’m in Menlo Park. I’ve just undergone day 1 getting fitted for my mask/cradle, having the CT scan and MRI ending with an audiogram. Everyone who has helped me so far has been extremely kind.

In case any newbies want to know what the procedures might be like while going through them, I thought I might jot some notes about what I am experiencing at Stanford University while undergoing the CK treatment.

After fitting me with an IV for injecting the contrast material/X-ray die, and don’t forget all the paperwork, the CT scan came first. Sandy asked me to lie on the table that moved into the machine and fitted me with the mask/cradle right then and there with the help of Dr. Lieberson, Assistant Professor, Neurosurgery. Sandy placed the cradle material under my head and began to knead it to start it’s solidifying to shape. The cradle (Sandy likes to call it a pillow) was just a soft lump of stuff that my head rests on taking the form of a base to which the mask attaches rendering my head motionless (of course, that’s the point). Dr. Lieberson then brought the mask material over and it appeared to be a rectangular piece of green cloth with diamond shaped holes in it measuring maybe about 5” by 15”. They warned me that it would feel like a wet cloth, and I suppose it did – but not so wet as I imagined it would feel. They laid it across my face covering only my chin, mouth, and part of my nose. They then pulled it up to cover my forehead, attached it to the cradle, and told me it was going to tighten up – which it did in mere seconds.

All of the above was the exciting part. The rest is just sliding into the CT scanner for I guess 10 minutes or so (one loses time in those things) and then on through the Stanford University maze of hallways to arrive at the MRI department which, until their planned move by November 11 this year, was a pretty cold place (temperature-wise). About 10 minutes waiting then into the tube, about 15 minutes of imaging then out and done until my audiogram at 1:00 pm.

My appointment began at 7:15 am (and one of the nurses was calling in late as I arrived) and I was out by 10:00. The worst part for me was no food or drink except water 4 hours before the procedure and the directions to drink at least 8 glasses of water after the procedure before I have any coffee, soda, or alcohol (I am a coffee snob and I like my red wine). So all in all, a pretty simple, fast, and painless day 1.
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

LisaP

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Re: My turn to nuke the alien . . .
« Reply #11 on: October 11, 2010, 05:44:07 pm »
Hi,

Thanks for the info, I am W&W and like to know how others are receiving treatment.  Keep us posted on how things go.


LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

moe

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Re: My turn to nuke the alien . . .
« Reply #12 on: October 11, 2010, 07:42:18 pm »
Kinda scared me there, Doc!
Is that what you get to keep on your wall? You could also rob a bank if that if you wanted (halloween is around the corner too).
Again, best of luck, Mark!
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

free2be

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Re: My turn to nuke the alien . . .
« Reply #13 on: October 12, 2010, 06:24:52 am »
Mark,

My recent experience with the Stanford CK mask and CT was exactly like yours (except our faces are different so my mask wouldn't fit you. :) It was a very quick and easy process; much faster than i had imaged. And i agree, the worst part was no coffee or caffeine before hand and none until drinking 8 glasses of water to get the contrast material washed out. But, I'm glad they are insistent on getting rid of that stuff, but boy did I want my coffee! That's your longest day. The treatments don't take that long and are no big deal. The mask was tight the first day and then they adjusted some things for me (cut out my nose cover; I knew I had a big nose, but now it feels like it was huge). It didn't help that I had that stupid cold. I have a picture I had them take too, but I'm not so sure about posting it. It is certainly not my best image!

I hope you're having some fun today. If you were going into San Fran or anything, I should have sent you our BART passes as we had money left on them.

It's good that you aren't nervous. I was just stressing about the whole natural aspect, but once they gave me a little more detail about the bugger being bigger than I thought, it was obvious what I needed to do. Once I really made that decision, I wouldn't say I was nervous...I was something...I just kept saying, "it's just another day, right"?

So, relax and enjoy your stay. I assume the weather cooled down from when we were there. I was disappointed it was so hot for our visit.

Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

6pick

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Re: My turn to nuke the alien . . .
« Reply #14 on: October 13, 2010, 08:23:54 pm »
Doc, I think we all should make it a tradition to post our picture-in-mask on this forum - what d'ya think, Connie?

Connie, thanks for the BART pass offer, but we went west. My wife used to live in this area and frequently visited her mother living in Santa Cruz, so a trip down the coast was memory lane for her. The weather prediction was low 70s all week, but it's been in the 90s since we've been here . . . go figure.   ???

My experience in this process so far is just what Connie and Doc have said here - ain't no big thing. But for anyone wanting to know why it "ain't no big thing", read on:


I’ve just undergone day 3 – day 2 being a day off and a trip for my wife and me to the coast where we downed a beer sitting on the sand watching surfers and sea otters at Scott Creek beach. The doctors and technicians spent the day programming the robot.

But day 3: the room is smallish with little but the robot and the table upon which I laid (and a little CD player with great music). Dr. Gibbs was there briefly along with another doctor (whose name escape me, but I’ll try to get it for tomorrow) and two CyberKnife therapists (one of whom introduced himself as Jackie). After I took a steroid for swelling (Dr. Gibbs described my alien as “generous”) and a pill for nausea, we got right to it – I want to fry this sucker. I was down for about 45 minutes with the mask securing me to the table. It was a bit tight, but that’s the point. The pressure was mostly at the nose, mouth, and chin. They kindly asked me if I was warm enough and, even though I was fine at the time, I get cold easily, so to be prepared, Jackie brought me a blanket. The therapists folded around me a “wrap” of sorts to keep me on the table. My wife shot a picture that I’ll try to upload when I get home and everyone left the room so the party could begin.

As I mentioned, I was down for about 40 minutes. It was very quiet in the room. The volume on the music was very low and I could hear it clearly. The therapists came in to check on me after about 30 minutes and reassured me that the small head movements I was forced to make swallowing from time to time, or from taking deep breaths offered no challenges to the procedure. The in-room controller lasers would readjust the robot as needed and if my positioning got too out of whack, the therapists would see it from the control room from which they monitored constantly and would stop the procedure, come out themselves and readjust my table.

Right now it’s 3 ½ hours post treatment. I have fullness and tinnitus but I can’t say it’s any more or less than it was last week. Dr. Gibbs said I might have the fullness, but in any case, there is no pain.

I expect I'll write tomorrow, but I don't expect I'll have much to say that will be different than what I've written today.

'K, time for wine . . .

Mark
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

 


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