Well, that title is misleading, because the mask was made of titanium and plastic, but I sure felt a glimmer of what it would be like to be the Man in The Iron Mask.  Even though I had to wear that stupid frame thing, it was for a specific, GOOD purpose, but it still felt so demeaning and inhumane.   I can't believe that it has been 6 weeks since I had gamma knife. 
     I have put off blogging about my Gamma Knife a.k.a Stereotatic radiosurgical treatment.  Gamma Knife is brain surgery without the knife.  They use radiation beams to destroy the bad cancer cells in the brain, leaving most of the rest of the brain tissue undamaged.  I slept through the actual gamma knife procedure, it was the PREP for it that was terrible.  I have found that the prep for MOST of these tests, and treatments etc. turns out to be worse than the actual procedure. 
     When I found out I had a brain tumor, for the first time since I was diagnosed with stage 4 inflammatory breast cancer, I felt completely hopeless.  I felt like I was secure in my illness, I felt like things were under control, and when I received that phone call from my doctor, I felt deep, heartbreaking, gut-wrenching sadness. 
       Anyway, the actual gamma knife treatment was painless.  It was getting the shots of numbing medicine that was incredibly painful.  I was supposed to receive some drugs in an IV to send me to La-la land, but I didn't receive them until right as the neurosurgeon was injecting numbing medicine into my head prior to screwing the frame into my head.


In this picture you can see the nurse injecting my relaxing, la-la land medicine, right as they were prepping my head frame. 


For the radiation planning, they put this lovely plastic helmet on, to measure the angles of radiation.  I felt ridiculous in this get up.


This picture is the tray of screws they use to screw the frame into your head.  I am glad that mine weren't the big huge long ones.  you can see which size they used in the empty spots on the tray.


Don't I look absolutely pathetic?  I was so miserable with the frame.  It was so uncomfortable.  There were two screws in my forehead, and 2 screws in the back of my head.  I couldn't rest comfortabley because of the metal around my head.  I can't even find the words to describe how I was feeling during this whole procedure.


Here is a closeup of what the frame screwed into my head looked like.  I was so swollen and sore for weeks on the spots where the screws were.  I couldn't turn my head, and I had four mini headaches where the screws were.


This picture is of what they attach to the frame for the MRI, CT scan and actual radiation.  It attaches to the head frame, so on each machine your head is in exactly the same place.  This way they make sure they are accurate in their planning of the radiation and the actual radiation.  Luckily I was able to sleep during most of the scans and actual radiation. 


Here I am on the machine where they do the radiation.  I lay on the table and the round part opens and then they beam high dose targeted radiation at the tumor.  I am not sure how the whole thing works, I just hope it did!  The radiation onc. told me that there is a 70% chance that I will have more tumors grow, and even though the radiation has a high success rate on treated tumors, there is a high likely hood that after a period of time, treated tumors may start to grow again.
      


These are the screws that were in my head. 


Here I am after I was all done.  I felt like the hunchback of notre dame.  I had all these weird misshapen lumps on my head for weeks after like Quasi Modo in the Disney version of Hunchback.  It is hard to see in the picture, but I had big fluid filled bumps from where they injected the numbing medicine.  As time passed, those lumps moved from my forehead down t my eyes, and I really had a swollen face for weeks after.  At least my eyes are finally back to their normal shape, because I had a lot of swelling around my eyes and eyebrows. 
     I am so nervous for my brain MRI today.  I see my local radiation onc, on Wednesday.  After already having bad news with my other scans, I am so scared that my brain MRI will be bad news as well.
    So that is my gamma knife experience.  I really don't know if I could do it again.  I guess I will make the decision when and if I have to. 


Nancy
10/6/2008 05:05:02 am

Amber -

Can I tell you that I am so frustrated and inspired at the same time? I want so badly to know what to DO to help you. It is frustrating to realize that there is nothing I can DO. We all do little things, but it just doesn't feel like enough. At the same time, I am so inspired by you. I know you are scared and sad and that you feel weak sometimes, (I read all the way to the end of that blog) but the definition of courage is to do something even when you are afraid. You continue to face this challenge with courage instead of bitterness. You help me every day. You say you feel bad for the nice things that people do for you, but you need to know that your example to me and others is worth more than any soup or casserole you could make. Thank you so much. Love, Nancy

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10/6/2008 09:25:08 am

Dear Amber,

I don't useally post a comment because I always talk to you about your Blog in person. But I do need to say that, that was a most difficult day and an even more difficult thing to watch you go through. In fact words can not even express how extremly hard that day was. So much sorrow and pain that dad and I felt as we watched you go throught this whole procedure. I felt that in some way that is what our Heavenly Father must have felt like as he watched Christ suffer in the garden and on the cross. As we had to turn away from your pain and as dad had to leave the room because your suffering was causing him much heart ach. I new at that moment that Heavenly Father was so mindful of you and the suffering that you were going through and that he will always be with you through all of this most difficult journey that you are called to bare. We are so blessed as parents to be able to grow and learn through your great trial. Even though it is really, really hard each moment that we spend together I cherish. At the doctor at the hospital waiting for test. Driving in the car going out to lunch and just visiting with you at home or on the phone. I want to tell everyone who reads this to always treasure you husband and children they are priceless gifts. You never know when one of those will be called upon to make a difficlt journy in this life. Do not waste a moment.

Love Mom, SMILE!!!:)

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Trish
10/6/2008 12:24:40 pm

Amber,

After reading your post today, you continue to amaze me. You are sharing your experience and helping others to understand it. Your blog is so raw and true. I am inspired by you and your family. I am reminded how life is fragile and how we all are really connected. Your mom is so right when she says to not waste a moment.

THANK you for sharing your journey with all of us. I am praying for you and your family. You are totally amazing!

Trish

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Love you Amber!!
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So glad that I have you as my neighbor.. Your kids are so wonderful.

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