Stanford-bound this weekend

[novagirl]

Hello all:

I have not posted in a while. Here is my update: I've been in w&w for three years (diagnosed with an AN on the right side in July of 2009). My AN showed slight but steady growth. The doctor who has been following me here at the Georgetown University is very pro-surgery and against CK, even though I originally went to Georgetown because I wanted CK..... Anyway, I have been in touch with Stanford (they are INCREDIBLY responsive and easy to work with!), and am going to get CK there next week. This forum has been a great resource and support to me for the last three years, so just wanted to thank you all for being there. I know a lot of people posted on here about their great experience at Stanford, so am praying for a smooth treatment and peaceful death of the tumor .

Wellness wishes to all.

[leapyrtwins]

Good luck.

I've heard nothing but great things about Stanford & Dr. Chang.

Jan

[MDemisay]

Dear Novagirl,

Congratulations! You've conquered your toughest hurdle, that of deciding the treating facility and doctor. You should be coasting on easy street now.A relaxing CD meditation would help I used Dr. Wayne Dyer's I AM meditation available through Hale House. Would you like me to pray for you?

Mike

[novagirl]

Thank you, Jan and Mike.
Mike - your prayers would be greatly appreciated.
Thank you!

[Suu]

Good luck Novagirl.
We're right beside you all the way. 

Best wishes,
Suu xx

[Jim Scott]

Novagirl ~

Thanks for your participation on these forums over the years.  My thoughts and prayers will be with you as you prepare for your CyberKnife treatment at Stanford.  May it go well and without complications. 

Jim

[MDemisay]

Novagirl,

Prayers were said for you wishing you well on your way toward treatment. May I offer a suggestion? It would be helpful for us to know how you are doing, would you post regularly, it has been helpful to me and a number of others here on the forum and it helps to keep us connected.....Only if you are feeling up to it, of course!

Mike

[novagirl]

Thank you everyone. I'll keep you updated on my progress.

[It is what it is]

My thoughts and prayers are with you as well.  I had a consultation with Dr. Chang and was very impressed with him. Please let us know about you and your experience.  With caring,

Karen

[novagirl]

Hi All - just a quick update from Stanford. Day 1 (Monday) was pretty uneventful: an MRI and then consults with Dr. Soltys and Dr. Chang. Both are amazing - very responsive and caring. Day 2 (Tuesday) had my mask fitted and a CT scan with contrast - the entire procedure took 15 min tops. Tomorrow I start my three days of treatments. I was worried it would be difficult to breathe through the mask, but it is fine. The make sure the mask is molded in such a way that you are able to breathe just fine. So anyway, everythis is moving along as scheduled. Thank you everyone for your support and prayers. It really helps.

[It is what it is]

Thanks for sharing about your experiences so far.  Continuing to keep you in my thoughts and prayers. 

Karen

[novagirl]

Thank you, Karen.
Had my first treatment today. Had to wait a bit before we started as they had to reboot the computer. But once we started, it was pretty easy. They gave me two pills: a steroid and an anti-nausea pill. My husbad and daughter got to see the treatment room. Overall, I'd say the procedure was ALOT easier than getting an MRI. For one, you are not enclosed in a tube. The treatment itself lasted only 30 minutes and I just laid there listening to a CD I brought from home (I was listening to Chopin - I play the piano, so it was really relaxing to listen to something familiar and took my mind off of the treatment itself). I also asked the therapist to cut out the space for the nose in the mask - it made a lot of difference for me. The robot itself is pretty noiseless. I could hear when it was moving around, but tried to keep my eyes mostly closed. It comes around from all sides, so it was pretty freaky to stare into its "eye" when it was right in front of me. The therapist was letting me know when we were half way through and then with 10 minutes to go - which I also found helpful. After the treatment, we drove to Half Moon Bay and walked on the beach. I didn't feel any different, maybe a bit tired and felt a little fullness on the AN side, but that's about it. Two more days to go....

[It is what it is]

Thank YOU!  It's great to receive such a thorough report of your experience.  I'm glad to hear your family is with you. 

Karen

[MDemisay]

Novagirl,

Glad to hear your family is with you for your treatment as you go through this.

I must say I didn't think about music at all (I find classical music relaxing as well) good for you! I chose meditation to get me "there" to a relaxed state of consciousness, you chose relaxation of pleasant music to get you "there". May I ask what Chopin classic it was? Whatever works for you! Congratulations on your first treatment on your road to wellness.



I will continue to pray for you.

Mike

[novagirl]

Thank you, Karen and Mike.
Mike - I used Chopin's favorite piano works CD - it has a nice mix of nocturnes and waltzes, beautiful music. I think the therapists enjoyed it too .
So I am all done with CK - yay! Days 2 and 3 were just as easy as day 1 - 30 min of laying still.
I also saw Dr Soltys and Dr Chang today. My first post-ck MRI and hearing test are in 6 months. Dr. Soltys said it would most likely show swelling. Dr. Chang thinks it might look the same as now. They both agree that it will take 2 to 3 years for the tumor to die. I asked Dr Chang about supplements or diet regimens that he recommends to his patients. He says that a lot of people take anti-inflammatory supplements to try and mitigate any possible swelling. He thinks the effect of those supplements will be minimal, but nonetheless if I were to take something, his top three choices would be vitamin e, vitamin c and fish oil. Overall I had a very positive experience at Stanford. The entire team was great, the doctors are just awesome. No regrets about this decision whatsoever.

So now I join the ranks of toastie-posties