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Archive => Archives => Topic started by: ppearl214 on July 17, 2006, 11:24:28 am

Title: For when we all feel like crap -- physically, emotionally, spiritually
Post by: ppearl214 on July 17, 2006, 11:24:28 am
I heard this song on the radio on my way back to the office from lunch hour... and the more I thought about the lyrics and what they mean... it applies to us all, regardless of treatment, regardless of outcomes, regardless of how crappy we feel.  It's time to stand up, shout as loud as we can and gain our strength from each other!  So, sing along with me as I'm singing it at the top of my lungs...dang it! :)

xoxoxo to you all! Hang in there!

==================================================

IT’S MY LIFE
By: Bon Jovi

This ain't a song for the broken-hearted
No silent prayer for the faith-departed
I ain't gonna be just a face in the crowd
You're gonna hear my voice
When I shout it out loud

Chorus:
It's my life
It's now or never
I ain't gonna live forever
I just want to live while I'm alive
(It's my life)
My heart is like an open highway
Like Frankie said
I did it my way
I just wanna live while I'm alive
It's my life

This is for the ones who stood their ground
For Tommy and Gina who never backed down
Tomorrow's getting harder make no mistake
Luck ain't even lucky
Got to make your own breaks

Repeat Chorus:

Better stand tall when they're calling you out
Don't bend, don't break, baby, don't back down

Repeat Chorus Two Times:
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: Captain Deb on July 17, 2006, 11:52:45 am
This is one of my favroite Buffet Songs for when I feel particularly "Wonkyheaded!"


Gravity Storm
[/size]

Apple fall out of the tree and hit the ground
Pretty soom we realize we're earthly bound
Babies fall and babies cry in early years
Mamas dust them off and wipe away the tears

[Chorus:]
Ohhhhhhhh watch out for that gravity storm
It don't give no warning signs
Ohhhhhhhh watch out for that gravity storm
Ohhoo

All your life you have to deal with ups and downs
So listen to your heartstrings as you move around
Don't forget to listen to the steady beat
Don't forget to balance on your ready feet

[Chorus]

I will keep you warm
Shelter in the storm
All your life
I well keep you warm
Shelter from the storm
All your life

Apple fall out of the tree and hit the ground
Pretty soom we realize we're earthly bound
Babies fall and babies cry in early years
Mamas dust them off and wipe away the tears

[Chorus]

I will keep you warm
Shelter in the storm
All your life
I will keep you warm
Shelter from the storm
All your life

RAWK ON!!

Capt Deb 8)
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: ppearl214 on July 17, 2006, 02:13:23 pm
me likey, Capt'n! :) thanks for sharing! :-*
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: ppearl214 on July 24, 2006, 08:29:20 am
I didn't think I'd be bumping up this thread anytime soon, but having one of them days and need a good cry.  In all my discussions and research and blah blah blah, seems I am alone in my "benchmark" of CK treatment and amount of RADS received.  The side affects for me have interferred with my work life, my personal life and emotionally, I am now drained. As many of you know, I have such wonderful support around me, a wedding to plan  :o (I'm talking the big ceremony next year) and so much to deal.  I know I'm a mentally strong person and I know I'm entitled to my down days, but I have to say, I'm feeling alone in many aspects as I have no one to share the extent of the treatment I received against others that also had CK. Now, don't get me wrong... I do not question my decision. I do not question if other options for me should have been done. I'm thrilled I had CK done and have recommended it to many.  But.. and yes, there is a but (and not my fat derriere, thankyouverymuch!)..... the side affects from this dosage is really wearing me thin.

I know many of you have been following along with my journey here. Gawd knows how many of you have tolerated my phone calls and such. I know many of you have given so much to me that trying to give back just doesn't seem to add up, regardless of what I try to do. 

If you are planning CK, please please please make sure the radio-team gives you no more than 21Gy (18Gy-21Gy is the standard, thus far).  For this person that has been zapped and whacked beyond imagination (and yes, knowing I am part of a study at BI for CK).... I urge you (all potential radio-patients) to reconfirm the amt of Gy they are going to dose you.  I thought I was safe with 30 Gy.  As one dealing with the after affects, I implore you to make sure your CK centers stick to the standard.

So, that is my rant for the day.  Not often I have one... I think I was overdue.  Heck... if I had more than 2 cups of coffee today, can you imagine just how bad this rant woudl be? ;)

Thanks all for your good ears... truly. No replies back to this rant necessary... just needed to get it out and to see it in black/white does help.

xoxoo
Phyl
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: wind6 on July 24, 2006, 11:53:45 am
Ok Phyl, no real reply as requested but, a cyber hug instead(((((((Phyl)))))).
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: Obita on July 24, 2006, 12:50:38 pm
Dear Phyl:

I could go back and read your posts to find this out but there are four zillion so I will just ask.  Why did you get so much radiation?  I am a Translabber so I don't know a whole lot about GK, CK etc.... so I am just wondering. 

I say:  Rant here, just don't kick your pc.  We would miss you while it is in the shop.

I hope your day is getting better,  Kathy
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: nannettesea on July 24, 2006, 01:07:52 pm
Oh, Pearly, so sorry.  I also know how it feels to be completely alone, not about being hit with a lot of rads, but finding no one else out there who has symptoms like mine so long after surgery.

Cry all you want, have a big 'ol pity party.  Then rest.  I'm seeing a massage/reiki practitioner who says to put my hand on my head, just feel the emotions, and it really is calming.  Feel what you are feeling, and then let it go and *as you have said* surround yourself with light.  It will be all right, to quote the little bracelet Kathleen gave me and I now wear 24/7 as I hold her in the light.  And all of us.

so much love, vent ANY time.

Nan, the dizzy one--change to dizzy Diva   ;D
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: Derek on July 24, 2006, 01:37:45 pm
Hi there Phyl...

Not sure if blokes are allowed to give out 'huggles' to you ladies but your new pal in the uk would like to send you a zillion cuddles in your hour of need...tomorrow will be a better day for you.

Take care

Derek
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: ppearl214 on July 24, 2006, 02:00:27 pm
thanks folks... and Derek... all blokes are allowed to give huggles.. my bloke lives outside SE London/Brixton and I know those UK huggles... worth every bit of Cadbury, Jaffa Cakes and Radox bath (but, I'll forgo the Marmite, ok? :) ) I can get.. thank you all.. tomorrow IS another day! :)

xoxo
Phyl
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: Raydean on July 24, 2006, 02:09:28 pm
Hi Phyl

I don't have the answers to the spoken and unspoken questions that you have.  I do know alittle about being alone or at least feeling that way.  Both you and Chet were/are in unchartered areas when dealing with the AN.  the harder we try to find the answers or direction, the more elusive it becomes.  The aloneness of the situation at times can be overwhelming
 
You may be alone physically in the area of treatment that you received and the possible outcomes.  
This much I do know that the people that love you so dearly, including many on this forum are surrounding you with love, the Angels are also holding you within their embrace.  All things are possible.
I now that you will  somehow change this situation  into a positive, and use it to the good of others.
Phyl, you are so dearly loved by so many.  i wish you could see the wonderful person that we see. You have touched so many peoples lifes in such a positive way.  You're our designated cheerleader!! But even cheerleaders need cheering on sometimes.

So today it's ok to cry, yell, toss things, stomp your feet, jump on the bed  whatever will make you feel better. Tomorrow will bring a new day and a new beginning.

Sending big hugs and love along with a open phone line anytime.
Raydean

 Ã‚ 





Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: Sue on July 24, 2006, 02:28:44 pm
So sorry, Phyll, that you have had some really bad days.  :'( Yes, we had our zap's about the same time, but I am not going through anything like you are.  I don't even know how hard they zapped me...if they told me I have forgotten. I have had my 3 month MRI and will go see doctor next Monday. If I can REMEMBER I will ask him about that. Why are you so "special" that they had to drill you with the Super CyberKnife...the Heavy Duty Dose...the Super Size Me zapper?  Not that it's any of my business, mind you.  Just curious why they had to go above and beyond the norm.  ???

That massage therapy sounds great. Maybe we should all do Tai Chi and also some meditation.  Or a Spa Day. 

Prayers and good wishes for you, Phyll.   :-* :-* :-*

Sue in HOT, HOT, HOT Vancouver
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: marystro on July 24, 2006, 05:13:19 pm
Hi Phyl,

We love you, angel girl!  You are our line, our pick-me-upper, our best girl.  As Alex (my son) says, we love you all the way to the moon and back.  Don't give up hope.  It will be better.  Not sure why they gave you so much dosage??  Thanks for reminding me to check with my doctors on the dosage.  We are all treading new water with new medical technology.  Stay strong and I know you are.  Thinking about you all the time.  Talking about you all the time.

Mary
xxoooxxxoooo
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: matti on July 24, 2006, 07:39:27 pm
Phyl - Wish I was there to give you a big hug and wipe away your tears.

Luv ya,
cheryl 
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: Larry on July 24, 2006, 09:59:01 pm
Oh girly,

Agree with all the above posts. You have been there for everyone else so now its our turn. You gotto be strong kiddo. Just think of what the cheeky bloke would say if ya didn't have the energy to blow up your sword!!!!!!!!!! Actually, I think it's currently stopping the PBW from sinking so ya gotto remain strong, can't have all the wenches and co drowning now can we.

hugs all over for the girly.



Laz
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: DeniseSmith on July 25, 2006, 06:29:23 am
Phyl,
just saw this post this a.m. I hope you are feeliing better today.   You are a strong and caring person.  I am happy to have "met" you through this forum.  Your kind words and humor have helped me when I was down.   Hang in there!  You are doing GREAT! ::)

As someone, don't know who, said, this too will pass.   

Your cyber friend,
Denise 8)
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: Captain Deb on July 25, 2006, 10:31:53 am
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!!
[/size][/color]

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!
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: Larry on July 25, 2006, 04:42:38 pm
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
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: ppearl214 on July 26, 2006, 09:46:59 am
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)
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: Larry on July 26, 2006, 05:14:47 pm
You tell 'em girly.


Laz
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: marystro on July 26, 2006, 05:24:50 pm
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!
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: debora on July 26, 2006, 09:11:17 pm
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
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: ppearl214 on July 27, 2006, 09:27:43 am
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
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: Sue on July 27, 2006, 11:49:06 am
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
Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: okiesandy on July 27, 2006, 02:45:31 pm
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).  ;D

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

Title: Re: For when we all feel like crap -- physically, emotionally, spiritually
Post by: ppearl214 on July 28, 2006, 05:57:05 am
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