I'm going with my gut and have made a decision!

[chloes mema]

Suu

Thanks, feeling emotionally better but my neck pain has now started to include my upper back so I made an appointment for a deep tissue massage today.    I also went to the gym and did a good work out which I had hoped would help but didn't.

I hate to be such a wimp.  Had a bit of a pity party last night which I think did help; got some of the frustration out.

Now I'm waiting for that inevitable call which will tell me what the dates and times are for my CK.  Trying not to stress over this any more.  (good luck with that)

Karen 

[chloes mema]

In case any one was wondering, I'm still sitting around waiting for a call from the CK center for a procedure date.

Stopped by the center on Monday, they said they were working on the protocol then Dr. Greenberg needs to sign off then they will call me.  Figuring that Dr. Greenberg only comes to this end of town on Fridays I suspect I'll get a call this Friday afternoon.  (Wonder if that's why I'm starting to get another tension headache, Friday is just around the corner as they say.)

Also, Dr. Bartels is out of town this week, I think, and he needs to be at the first procedure session so that should have been my first clue that nothing will happen till next week.

Will keep you all posted.   

Karen

[Suu]

Hello again Karen

Friday is sooooooooooooo soon!  Are you prepared for the call?  Breaths in and out dear friend.  If you find yourself at loose ends then please do come here and journal your thoughts, email me or someone else, or you could always hop on a plane and come over and do my ironing for me?? 

You definitely aren't a wimp or you'd be moaning at every turn and you aren't doing that. 

I'm not in your shoes but can feel your 'excitement' (couldn't for the life of me think of an alternative word) at waiting and I'm sitting beside you all the way.

Hoping for news of any sort and fingers crossed that it comes before next week.

Kindness and hugs,
Suu xxoo

[chloes mema]

Hi again Suu

I'll come do your ironing.     Actually, ironing relaxes me, can you believe that?   

Had a horrid headache last night but it's either stress and / or allergies.  (couldn't be that glass of white wine, right?)  I just want to be happy and healthy for my big debut.   

I'll email you and keep posting.  Thanks again for your friendship and support.  As others have posted, I could NOT get through this with out the support and friendship of this forum. 

Karen

[chloes mema]

Finally I have a start date for my first CK procedure!!!!!!  (I think I'm a happy fate)  (oh, what a typo that was - happy face)

Well, I finally decided to get pushy this morning so after numerous phone calls on my part for two hours this morning I finally got a call from the cyber knife center and my first procedure is scheduled for this Thursday at 4:30pm.  I'm a morning person so my preference for any of this would be to have it at 8am in the morning but after what it took to get this appointment I wasn't going to push it.  My daughter said the only concern she has about doing it so late in the day is who do I call if I have an adverse reaction hours after I get home.  So my plan is before I get on that table Thursday is to get names and phone numbers!!! 

I wasn't home to take the call so my husband tracked me down via cell phone to let me know.  I was out doing "retail therapy"!!!   

Any way, it's now on the calendar.  I called the cyber center back to ask if I was only having one treatment or three.  Lisa said three but she only had a date for the first one which is a little nerve wracking for me especially after what I went through this morning just to get this first one set up.  Essentially, my life has been put on hold since last Monday.  I cleared my calendar for last week and this week, except for a 10:30am appt on Thursday, and now it looks like I'll have to clear next week's calendar also.  The only concern I have for next week is we have friends coming down from NC and 8 of us are going out to dinner Tuesday night and I'm the one coordinating this whole thing.  No biggy but still.

So the moral to the post is it pays to shake the tree!!!

Karen

[Tumbleweed]

Finally I have a start date for my first CK procedure!!!!!! 
So the moral to the post is it pays to shake the tree!!!

Karen

Karen, shake the tree some more! CK is typically delivered in three sessions (sometimes more) 24 hours apart. The fact that you only have one treatment scheduled has me a bit concerned. You don't want to wait too long between treatments or the tumor might have time to recover from the first one. At least that's my understanding. If it were me, I'd want to know the dates for all three treatments before beginning the first one.

Best wishes,
TW

[Suu]

WTG Karen - Happy fate and happy face are the same thing aren't they? 

Thursday is sooooooooooooooo close!  Afternoon might be better than morning because you can sleep after it and wake the next morning with a differnt perspective on the little gremlim LOL

Can you update us on what you're doing in the leadup over the next couple of days till Thursday?  Pack, unpack, shopping (always a good standby for nerves)?

I'll be here waiting for you as will the rest of this bunch of wonderful bloggers on here.

Hugs,
Suu xxoo

[MDemisay]

Karen,

It's good to have so many praying for you! I don't know where I'd be if it weren't for all of you!

Now we have to pray for Karen, God will see her through this, with excellent results!

Mike

[chloes mema]

Unbeknownest to me that several of you were concerned that I only had one date and I could not get any information via phone yesterday, I stopped by the cyber center this morning and my second treatment is next Monday (3 days after the first) and the third treatment is Tuesday.  I had gone in with the attitude that if they did not have dates scheduled I was NOT going to do Thursday's first treatment.  When I first spoke with Dr. Bartels about the treatments he said the three treatments had to be done within ten days.

As was posted on another thread, we certainly have to be our own health care advocates.  And, in my case, shake that tree!!!! 

I will say I'm a bit concerned with this cavalier attitude from the cyber center and the doctors offices.  Thank heaven for this forum and those of you that have spurred me on through emails and PM or I'd be just sitting here letting fate take its course. 

Thanks everyone for your prayers, wishes, and especially your solid advice.  I'll keep posting as long as I can sit up to reach a keyboard. 

Suu - as to what I'm doing before my procedure.  Yesterday I did lots of retail shopping then was trying to find a drawer to put the new clothes in and low and behold I found a whole drawer full of clothes I had totally forgot about.     So washed those last night.  Also, went to the gym for 2 1/2 hours yesterday.  Today all I've done is go grocery shopping and I'm trying to work up the energy to clean house just in case I have none for the week end.  Eating healthy, having a glass of red wine at night.  Tomorrow plan to do my normal 2 hours at the gym and Thursday I have a pedicure appointment in the morning.    Want that french pedicure to look good while I'm laying on that table with my toes sticking out the end of the blanket.     (that'll never happen, I'm too short) 

Karen

P.S. I don't know if I'm just tired or getting depressed or what but I sure do not have any enthusiasm for doing anything now that I have all the dates set.

[MDemisay]

Karen,

I just have read your post now at 3:35 pm. You must be exhausted from all that stress and activity! Do yourself a favor and try to nap if possible or do some active breathing exercises with your feet up!

I cannot imagine the stress you must have been under (just like a receptionist not to understand, sometimes I just wish the dolts that delay us would experience a tenth of the frustration that they dole out)!

For now RELAX......RELAX......RELAX and trust in God that you've done your level best to see that you receive the best care, the rest is in HIS hands!

Your friend,

Mike

[lrobie]

Karen,

I'm glad you have all three dates sets.  You will have to keep us updated, if you are up to it, as you go through your treatments.  It sounds like you keep yourself very busy.  No wonder you are tired!!

Lisa

[Suu]

Karen - the set date makes it real.  I reckon I've asked in every second post on this wonderful site that deep breathing is relaxing, emailing any one of us is refreshing, and above all look in the mirror and smile.

Guess what?  You have my permission to not do anything! You can print that out and show your family that you have a note stating that you are off the clock and will not be doing a single thing for as long as you don't want to. 

Your guts has been right up to now and rely on it to get you through to the other end of this little hiccup in life.

Love and hugs dear friend.

Suu xxoo

[Tumbleweed]

I stopped by the cyber center this morning and my second treatment is next Monday (3 days after the first) and the third treatment is Tuesday.  I had gone in with the attitude that if they did not have dates scheduled I was NOT going to do Thursday's first treatment.   

Hi, Karen:

To my knowledge, Dr. Chang always performs CK treatments 24 hours apart from one another. The fact that your second treatment is scheduled 4 (not 3) days after your first, but the third treatment follows 24 hours after the second, seems to me to be a result of scheduling convenience on the part of the medical facility. If it were me, I'd ask your doctor if it would be optimal to have all three treatments completed within 48 hours (24 hours lapse between first and second and between second and third treatments). With all the other poor communication to you that you've reported with this institution, I am nervous that your care is not being given first priority (over scheduling ease).

You want and need a successful outcome (tumor control). Please make sure every aspect -- including scheduling/staggering of treatments -- is being lined up in your favor.

Sincerely,
TW

[chloes mema]

OK, I'll be back on the phone again in a couple of hours asking why these appts aren't all three back to back. 

Sorry to say but my first thought was that Thursdays first appt was either created for me or they pushed someone else out of that spot because I had called everyone on my list Monday morning.

This is why I (we) belong and are grateful to this forum.    Thanks everyone.  Keep mentoring me and I'll get through this.

Karen

[chloes mema]

OK, I just sent an email to Dr. Bartels, left a message for the surgical coordinator, and did speak with Dr. Greenberg.

According to Dr. Greenberg, with slow growing / no growth schwannomas you do not need to have treatment back to back.  He actually prefers to do every other day.  So I didn't get a chance to question it (he had basically finished the call & disconnected) but then why is my 3rd appointment exactly 24 hours after the 2ND one.  I'll have to ask that question tomorrow.

I'm just telling you what he told me.  These doctors are either going to wish they never took on my case or respect me for being such a pest.   

Karen