For when we all feel like crap -- physically, emotionally, spiritually

[Captain Deb]

Now Pearly, I ain't had a call from ya on yer free cell phone fer TWO WHOLE DAYS!!! WTF!!!
You know I'm always ready to splash around in the "Pity Pool" with ya, ya Wench!!

SPLASH!  SPLASH!!  SPLASH!!

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Just don't go to the deep end of the Pity Pool PLEEEEEEEASE!!!

Can ya take some time off work? You have sooo much on your plate right now, sounds like you need some "ME" time, girl. Just to eliminate some of the stressors might ease your symptoms a bit.
You know we all love you so much!!

Capt Deb
draggin' herself around like a slug from new meds!

[Larry]

Hey girly,

why dontcha come to the land down under for a week or so. Even though its winter here (probably be good fer ya with that heatwave ya havin) it's still around 72 degrees F.

Yer can relax at lotsa cafe's drinkin cafe' late's, mix with the socialites and do lots things.

I agree with the drug induced pincushion parrot - take a day or two off - pull a sickie as they say here.

Laz

[ppearl214]

Ok, I am going to preface this by saying a

HUGE THANK YOU

to each and everyone of you. You have NO clue the inner strength you all gave me... because... this morning, I had a LONGGGGG talk with my radio-oncologist about what has happened and what is going to happen!  yep, this girl grew female nads and made my point clear to the doc (of course, in a politically correct, polite way). I have to be my own best patient advocate, right?

In speaking with him, I shared that 30Gy is too much. He told me that he used the same amt on 2 other patients and are waiting for their authorization for me to speak to them re: our post treatment issues.  I also am used as a reference by BI for those interested in CK at BI.  Well, I did speak to another prospective patient who is also looking to fly to Stanford for CK treatment but insurance won't pay for that since CK is offered right here (actually, less than 10 miles from this guy's house!).  He was also told 30Gy by BI and also felt too high.  I don't believe he is willing to be a "study" patient but I reminded him of this newer technology and it's folks like us that help make these treatments in the future better for those that will be in our shoes.  The doc is going to do a courtesy call to this potential patient so he can also share his concerns with the doc.  How kewl is that!?!

So, this am... I *coff* delicately shared with BI that 30Gy may still be deemed safe BUT, the aftercare and afteraffects of the patients are compromised.  He listened to what I had to say, I listened to what he said.. and guess what?  Not only will he be discussing this further on the CK Society website (still no confirmation on the secret handshake) BUT, he is also going to his CK mgt to advise of our conversation and recommending that for all AN treatments, they will lower the protocol from 21Gy-25Gy.  I did state that 25Gy may still be too much but I give him credit for listening to me.. and as part of a study at BI for CK use, I requested further investigation of the radio treatments of AN's as it applies to CK.

Well, all in all, without going into the full 1/2 hr conversation, he was open to what I shared. He appreciated my feedback at this is a learning lesson for all for this new technology.  As with any "study group", there are certain limits they will try to push and I let him know that he physcially pushed mine too far and they need to revamp their AN treatments.

Ellen, I will talk to you on Sunday at the brunch about this... but know that BI is listening to me VERY carefully! Will fill you in then when I see you.

So, thank you ALL for the inner strength you have reenforced in me.... you all just... rawk!

xoxo
Much Love and all that gooey stuff!
Phyl

(edited to note following:  In stating this "new" or "newer" technology, it is in reference to how long it's been around (approx 10 yrs) vs. Gammaknife (over 35 yrs, etc)

[Larry]

You tell 'em girly.


Laz

[marystro]

Hi Phyl,

Did you ask him why the higher dose?  Is it to study if there is better long term effect comparing to lower dose or other academic reason?  I am still baffled 18 - 21Gy is working why change it unless there is some underlying concern about the effectiveness of the lower dose...  Hmmm.  Wonder if I should post a question to Dr. M and Dr. S on the CK site....

Mary

P.S. You are one brave girl!

[debora]

Phyl,   I know pretty much how you are feeling,  I was zapped also and quite sick for a long time, started to feel much better after a long fight and out of the blue last Thursday I was on the ground again and so completely sick I couildn't stand, walk, sit or hold my food in.  Another trip to the hospital and pumped full of meds to get me to quit puking and being so DAMN dizzy.  Does this mean I have to feel like shi- for another year, does this mean I will have to fight this vertigo for that amount of time again?  I don't know if I am up to it, I don't know if I want to keep feeling like I can't do anything on my own.  My Dad is dying in a different state and I have been able to drive to go see and help out, now I can't even go more than 15 minutes in a car. This has been the worst year of our life and now on top of all the deaths going on in our family  I get to fight this shi- all over again.  I understand your pain, I just can't cry because I am so damn mad!!!!!!!!!!!!!!!!!!!!!  Deb

[ppearl214]

Hi all and thank you so much.

Mary, I had a longggggg talk with my Dr. M about the protocols used on me, who made that decision, why that decision was made and I have to also keep in mind that I signed onto this CK study... BUT, I certainly drove my point about lowering the protocol for AN treatments and he listened to each and every word I had to say.... and for that, I'm thrilled.  Yes, still having my side affects but overall.. the one thing I keep in mind..... I'm doing fairly well, yes, it interferes with certain aspects of my life but overall, I could be in worse shape... I'll take what I got!

Huggles to you all and for those still feeling crappy, sh_tty, lousy, down in the dumps, etc.... our shoulders may be overly used but always available for further use! I'd take advantage of that!

Phyl

[Sue]

You go girl!  So proud of the way you spoke up. How are they going to know unless you give them the report with the power point presentation?  I mean really!!  Hope you feel better soon. I obviously didn't get anything like you got, because I'm feeling pretty good. I'm sure it was just the normal zap.  I'll try to remember to ask him on Monday.

Take care,
Sue

[okiesandy]

Phyl,

I am so proud of you.  I have had to go up against some real Sh-- Headed doctors in my journey. I think my Dr. M was a lot more in tune with my needs and emotions than the neurotologist's I talked to. As you know the day before treatment they said I was going to have 1 shot. All along I had been told 3 shot. I spazzed, cried and just generally wimped out. Poor Dr. Medberry had never seen this side of me.  He said fine, not a problem, if you feel more comfortable with three we can re-figure an go with that. I can't even envision most of the doctors I went too even thinking that I should question or be upset about their decisions. I am sure I would have done just as well with one shot as three. Just couldn't seem to handle a last minute change (remember I am ancient and old people don't like change). 

I have said it before and I will say it again. It is about time all of us put a stop to the beating around the bush, and in some cases out and out lies and get some straight answers when we are researching this. I am a strong woman, but under the stress of having to sort out all of the information and miss-information to reach a treatment decision I just want the real skinny when I ask a question. If you ask two many questions they seem to think you are some kind of a nut case. Sounds like you at least got the doctors attention. Good for you girl.

Huggs and blessings to a powerful woman,

Sandy

[ppearl214]

HI Sue and Sandy,

OH, a tough lesson I have had to learn (I already knew it but have never taken on such female nads before to have the nerve to speak up as I did).  I do believe my Dr. M (not your's Sandy, although your's has been a gawd-send to me) is now listening very carefully and understands what I was sharing with him.  But, as I noted, I have no issue being part of a study if it will help future patients in their AN treatments.  I'll deal.... and in time, hope things alleviate... but for future AN patients... if it helps, then I know I've done well.

xoxoxo to you all!
Phyl