Best Wishes to Palace

[Palace]

Hello:


I leave for my first of the three in a row CK treatments. (in two more hours)   My husband wants to know can he watch through a window?  They let him during the Ct. scan.  It is four in the morning.........maybe in two hours someone will know the answer to this.  He was a mechanical engineer so, this part of the ordeal he will love if he gets to watch the machine.  (other than on the NET)

Oh, I will let you know what they do about the swelling situation where, I have the problem with steroid use.

We are leaving at dawn so we can see the "downed trees" this time.  (or deer running across the mountain winding roads)

I have a horrible headache but, I have to go get ready to leave.........



Thanks again,



Palace

[marystro]

Hi Palace,

They let my 8-year old son in to watch the last 5 minutes of the treatment.  You could ask them if they will let your husband watch at the end.  90 minutes each treatment is quite long.  I think mine was 30 - 45 minutes.  You will be in and out and fast.  Did you bring any CDs for them to play there?  After each treatment, they will give you a tiny purple pill (I think it's steriod) for the day.  I did not have any headache from them.  Good luck in your treatment.

[Palace]

Marystro:


I'm still online.  I was about to log off and you came on.  Thank you so much for the reply.  OK, I will tell Richard about that.  Remember, they are afraid to give me steroids because, I was in ER all night when the ENT gave me steroids.  I know it is made in the body natuarally and seem impossible to be allergic to steroid.  It will be interesting to see what they do for me and I wonder the dose of that purple pill you mentioned.

Oh, I did sign up when Oprah offered one thousand dollars for a stranger.  I thought if I win it I will give it to a stranger on the list who needs it to pay for their medical bills due to AN problems.  (or whomever I don't know on the list that needs it the most)  We are going down fast financially with this so, I would like to help someone else.  I hope the Oprah team picks my story about AN and someone needing the money.  It isn't that much but, it would help someone on the list.

Again, thanks for your answer about Rick getting to watch some of it and yes, I have my CD's ready.



BIG HUGS.......sort or worried here.........Love, Palace

[Obita]

Good luck Palace!!  I'm sending The Luck O' The Irish your way!!

Kathy

[nancyann]

Hi Palace - keep the good thoughts in your head, stay peaceful, stay positive.  Thinking of you, Nancy

[Palace]

Obita-Kathy,


Our first Golden Retriever came with her papered-name of, "Way-Mar's Kerrie of Kilarney."  (the Irish luck is coming down from the Rainbow Bridge where she is now)

Thank you for the *Luck O' The Irish..........walking out the door in about 90 minutes.

I remembered to feed the dogs before we leave!

My two relative dogs, Molucca and Molokai (littermates) are "cheering" at home today.  They are relatives to "Kerrie" dog.

The tumor is trembling in horror of what is to come for it today!



Thanks guys & gals,



Palace

[Obita]

Palace:

My AN recovery was so much sweeter with my now 13 year old Golden, Maggie Rose O'Brien - Irish she is!!

Hugs for you, chin and ear scratches to the four legged ones. 

Kathy

[Palace]

 

OK, thank you for so much help so far.  I'm home and they gave me Decadron.  (4 mg)  I will only take it if I feel extreme symptoms coming on.  (such as, spinning room....extreme headache, total dizziness, really bad ear pressure or extreme loud ear.....some of the things one of the doctors mentioned today.  I wanted to talk with the doctors after the first TX but, they had to leave. 

Here is my next question.  Is the CK dose or fractionized placement on the tumor the same each day or different.  For example....do they hit say the middle of the tumor the first day, more towards the outter part the second day and more extreme to the edges of it the third day.  I go three days.  I know this is a difficult question and maybe there is no firm answer as perhaps each case is different.  (or do they plan the CK on an AN basically, the same on a medium to larger tumor?  Does anyone know the answer to that?  Hummmmmmm, it just hit me that I should be asking this on the CK forum with those doctors. 

I have a slight headache now and the balance is more off but, that is all so far.  (only 4 hours after my first treatment right now)

My questiion is that if I don't have extreme symptoms from swelling the first day, will I expect that I will have no problems the second and third days.  (or is it sort of an accumulative thing.........building swelling and pressure as the duration of TX you have in a row?

Can anyone answer these questions?  If not.......I'll try the Cyberknife forum very soon.

The CD's playing that I brought helped me so much.  I brought "Torch Songs."  Does anyone know what those are?  LOL  No, you do not need to answer that question, too.



Again........thank you so much for helping me along this stressful journey,



Palace

[Captain Deb]

Yikes, Palace, did they tell you to take the decadron "as needed?" Swelling is much easier to control with a pre-emptive strike, than it is to get rid of once it starts. Please don't try to be your own MD on this one. I had the stuff pre- and post op and it really didn't affect me much, although different people react differently to it. 
Capt Deb

[Palace]

Captain Deb,


Yep, as needed because.........they were afraid to even give me any because, I went to ER that night from Pred., remember.  (meaning the steroid experience)  So, it is easier to control if I take it now!  Well, the pharmacy will close at seven and I have one pill.  I live way up in the mountains and about 45 min. from emergency.  I'm trying to remain cool about this.  How long does it take to swell?  (any ideas on that?)  I hope I have no problems in the middle of the night.



Again.......thank you,



Palace

[Crazycat]

Palace,

  They had me on that stuff (dexamethasone) 4 a day, 10 days before surgery.

  Paul

[vcschaub]

Steroids (both Decadron and Prednisone) are powerful drugs that must be taken in a strict manner. Dosage must be tapered down as a person goes off of them. Please be careful how you take your Decadron.

[lmurray69]

wishing you the best you are in my prayers too...keep us informed please..Linda

[Captain Deb]

Steroids (both Decadron and Prednisone) are powerful drugs that must be taken in a strict manner. Dosage must be tapered down as a person goes off of them. Please be careful how you take your Decadron.

Ditto! Take this stuff exactly as prescribed--no more and no less!

Capt Deb

[Palace]

Hello 


I'm almost there.  One more trip to be "waffle-face!"  I still haven't taken any pills.  (no Decadron)  The exhaustion is beyond belief but, I'm not complaining at all.  Tomorrow night is celebration time.  I can't wait!  Thank  you all so much for your help and I hope I have helped others already, as well.

Look under the Cyberknife forum with my nickname of Lacie about my latest post there regarding hearing loss.  I will be interested in the doctors answers.  I just posted that under general questions.

ONE MORE DAY!!!!!!!!!!  Are purple pirate sox proper........after all it will be a Friday?



Good night all,



Palace