CK...Here I come!!

[Musicman]

I have done a few--very few!--posts here, but, as with all of you, I'm hoping my experiences may help others down their road.

I have my fitting scheduled for the CyberKnife mask on Monday morning, March 26.  I begin with an IV to get a current CT and MRI.  My suspicions at this point is my AN may have grown.  (I tend to be a bit of a hyperchondriac, but I believe my hearing has noticeably worsened in the last 3 weeks.  Definitely, the ringing is louder!).

I must say, I am a little uneasy about all this.  I don't know specifically what days my treatments will be, but they should all occur during that same week.  The official letter from Stanford inidicated that, depending on complexity and proximity, the planning would be any where from one to a few days.  My doctor says mine is on the small scale.  There normal "small" AN's are 19mm and mine is 17mm.  Plenty of room for them to work.

For me, it's the unknown.  Regardless of how much I have read and how much I read here, it's still my brain we're now talking about.  Growing up in the 60's and 70's, I have been bombarded with how bad radiation is for a person from X-rays to treatment of cancers.  (By the way, for me I was surprised that an AN is not a "cancer" but just a tumor.  I didn't discover that until my most recent appointment!).  So, I am significantly gun-shy of radiation treamtnet.  Again, this is why I chose CyberKnife in that it's procedure is intended to reduce collateral damage to healthy areas of nerves and brains by vectoring lower dosage radiation to create a higher dosage only to problem areas.

Still, I have to confess, I am a little unsettled right now.  I believe I have made the right choice of treatments for me and I wouldn't do anything different as of now, but, I am a little anxiouis as the day draws near--9 days away!

[ppearl214]

Musicman... first, let me preface by saying... since you made your decision of CK, you are in the hands of the best of the best. Stanford is a leader in CK treatments and you are going to do great!

As for the anxiety.... ah, "fear of the unknown".... I know many folks that recently endured CK and GK that will note (well after the fact)... "heck, what was I so worried about?"   I admit I was the same prior to my CK and what helped me.... I got to see the CK prior to my treatment.... suggestion.... when you go in for your mask fitting, if no one is on the treatment table having CK done, ask if they will let you into the treatment room so you can see it, get a sense of it and really get a good feel for it.  For me, it totally helped my anxiety by seeing it first.  If that cannot be done, if you go to my frappr page (noted in my sig line here/below), take a look at my pics. You will see me goofing off on the treatment table, flipping the perverbial "bird" to my AN and what the mask did to my face during treatment.  Actually, rather comical when you see it.

The chance of you getting cancer from CK (or other radio-surgery treatments) is practically nil.  You have more chance of being struck by lightening vs. getting cancer from radio-surgery.  This is not a "disposable" radiation, such as cancer patients receive and the radiation actually disappears from the treatment room.

You are approx the same age as me.... and I'm doing just fine... just as many other radio-surgery patients here are doing (regardless of which radio protocol).  As we know, there are risks involved with any AN treatment (microsurgical and radio-surgery)  but I have such faith that you are going to do well, just like many of us.  Before you can say "djgtfoa ru tvnprajtdunp9vtqmweoinv tp9e mqowuo" 10 times fast, it will be done and hopefully, you (also) will be saying "heck, what was I so worried about?"

BTW, during treatment, keep a look out for the "eye"... for those that have had CK... we know the "eye"

Hang in there!
Phylo

[Musicman]

Thank you.  It was SOMEwhat reassuriing to see your pictures.  I'm not particularly claustraphobic, but I am a little concerned about being "locked down" by the mask.  What's that experience like.  Does it seem unduly confining?  How long were each of your treatments?

[Lorenzo]

hi,

my schedule at Stanford was over a week too. First day was the consult with the docs and the mask making and audio test. Second day was CT and MRI. DAy three, four and five were treatment days. Day one was the most stresful! I have NEVER in my life signed so many papers!!!

The mask is an experience. Not unpleasant per se, but the 'onion bag face' one has after the session is always interesting to look at. Also, I had the red as a beetroot then instant change to blanched almond effect after each treatment. I'm not claustrophobic at all, so I don't know if it would cause probllems. It isn't unpleasant all in all. In fact, I nearly fell asleep the third day.

And by the way, those pesky steroids are going to give you lots of energy and hunger too. They did for me! Except nobody ever told me about the constipation, so I ate! Not a good idea... Eat vegetables!!! 

Good luck with your treatment.

Ciao

Lorenzo

[ppearl214]

Hello Onion Bag face  .  Mesh Mask Face Here   I still have my mask and was thinking of hanging it on a wall to put the dog's toy in!

Musicman, sometimes Ativan (the "happy" pill) is given at the time of treatment to help with any anxiety (ie: claustrophobia, nerves, etc).  I actually slept through my treatments.  Ask if you can bring music as well. I found that to be more exciting than the treatments!   Easter time last year... and I brought in... Chipmunks Christmas (along with other guilty pleasures).  I was sleeping or rocking my feet back and forth to the music.

The mask (when you do your fitting) may seem a bit claustrophic at first, but honestly, try taking a deep breath... then another... and then, it's a piece of cake...  I promise you will be fine.  Please remember that it is short term and the ultimate goal in the long run should help with any temp uneasiness you may experience.

Phyl

[marystro]

Hi Musicman,

I read your post and remembered how anxious I was before CK.  Once I was done with the first day of treatment, I thought to myself, "did I really have treatment?"  It was a piece of cake.  Mark my words.

About the face mask, it was a little tight but Larry (the nicest tech there, and heck, everyone is nice there!) made it comfortable.  It did mess up my hair  .  I have my mask on the shelf in my closet.  See it everyday and reminds me of how lucky I am finding CK.  May be I will use it for some sort of basket?  Phyl, you give me an idea.  I may use it to keep our cat's toys in it 

They will give you a little pill after each treatment day.  It's steriod and I did not feel any different from it.  I slept well everyday and basically just lounging around.

I did not have any post CK effect until 6 months later when swelling and radiation set in.  My 6 month post CK MRI last month shows necrosis and a little worsened hearing.  Overall, given the alternative (surgery), I am one lucky gal!!  I am sure others will atest to it also...

Good luck and enjoy the ride!!!  You will be fine.

Mary

[Musicman]

Music?  Walkman or boombox?  I'm assuming boombox because a headset would get in the way of the mask?  I love the Katona Twins on their classical guitars.  Maybe I could take my Spanish audio CD's?

[marystro]

Boombox?!  Just bring your fav CDs.  My then 8-year old son gave me his jungle music.  Larry and I forgot the nurse who was there told me just don't jump off the table when lions, tigers and monkeys are all making noises lol     I felt asleep on my husband CD on the 3rd day however...

[Musicman]

I guess what I'm really asking is if they have playback capabilities or do I have to bring my own.  Sounds like you're saying to bring CD's which meant they can play them?

[BevM]

Hi Musicman:  Another Stanford CK graduate here!!!  Agree totally with Mary and Lorenzo.  My treatments were about 45 minutes each (3) and the time goes by pretty quickly.  They have a the boom box and many CDs including one I left there.   You probably want to bring your own though.  I was concerned about being attached to the table before I went but you will find the mask tolerable.  Since they want you to be perfectly still, I was not certain about opening my eyes.  I did "peek" a few times and found myself chuckling at myself!  Between the music and my tinnitus, the movement of the cyberknife was very quiet.  I remember my "peeking" and the "eye" of the Cyberknife was "staring" back at me.  I came away amazed at the technology,the expertise and the caring attitude of everyone I came in contact with.  Truly a class act!

Bev

[Lorenzo]

I'm going to take my mask one of these days and mount it like a trophy and put it up on the wall. It could also work as a light fixture, but it smells when heated up with the light bulb... sigh. Do you know what i really liked about the mask? The very hi-tech bits of sticky tape with fat marker lines for a rough positioning on day two. Always makes me laugh the contrast of CK and sticky tape. Love it!
CK was an experience! The worst past was the anxiety of session one and what would happen. In my case, nothing. No smells, hardly any noise, but I was settled in at a slightly off position that first day. So, I would say toanybody that goes for treatment, take your time in getting comfortable before they start. 45 minutes is long when the neck starts hurting.
Ciao, Onion Bag Face

[Musicman]

Thanks for the comfort warning.

[pearchica]

Hi Music Man: good luck with the CK treatment.  I too was scheduled on a Monday for my CT scan- they decided not to do an MRI.  I then went back to Ukiah (3 hours from Stanford) only to get a call Tuesday afternoon if I could come in.. I told them no, was too far away. They then scheduled me for Wed, Thurs, and Friday. The only disconcerting element I found was the initial scheduling... however, I did go in Wed, had the first treatment, and then after that they then told me what time to come in on Thursday, and then they had me come in Friday morning to get me on the road.

I think I was the most jittery day 2- the first blue pill (Decadron) had kicked in plus lack of sleep plus nerves.  However, by day three it was a breeze- also I knew it was behind me.

I know for me it was very sobering being in the waiting room with all the cancer patients. I am so grateful that if I had to get a tumor, that it is benign.

Good luck and keep us updated!  Take care, Annie

[Musicman]

"I too was scheduled on a Monday for my CT scan- they decided not to do an MRI."

I got the full treatment on Tuesday, CT followed by an MRI.  I wish I knew why.  I was initially told the CT would be all I should plan for, but, if after viewing the CT the doctor wanted/needed more info, the MRI would happen.  Well, I guess they needed more info!

Anyway, just had my first treatment this morning.  Fortunately for me, I live less than 20 mintues from Stanford AND this is my Spring Break as a teacher.  Everyone was so cooperative in working the scheduling for me.

[pearchica]

Hey Musicman: I have been thinking of you this week sending positive cyber rays from my location.  Hope all is well.  Take care, Annie