Sunday, November 3, 2013

Lions, and tigers, and brain surgeons? OH MY!!




Ok so here it is I got my results for my brain MRI on October 31st, and let's just say I had better Halloweens. 

The day started out early for blood tests, then I had a CT of my chest to check up on my lung inflammation, next mom and I walked over to another building for my brain MRI, then we had a nice lunch while waiting to go back and meet with Dr. Magical for results of both scans. 
As soon as she walked in I knew it wasn't good. She came in an gave me a big hug, which is not unusual, my Drs. are huggers! After the hug I asked was that a good news or bad news hug. She cut right to the chase and said the news is not so good. She started by saying my chest CT is showing a little less inflammation and they are sure its from the chemo and not melanoma in the lungs. Then she said but the brain mets are growing and its time to get rid of them. Before I could ask any questions she said Dr. Wonder was able to get me an appt. to meet with the best radiologist they have in 30mins. My first response.. so no trick or treating for us huh?(we were suppose to go trick or treating with Jax and my amazing nieces afterward). Ok maybe that wasn't the best first response, but we do love trick or treating right Mom!! Then I got more serious and we asked as many questions as me and mom could think of even though we would be asking the same questions to the radiology surgeon very shortly. But because Dr. Magical is wonderful she sat with us and tried her best to answer as many as she could. My biggest one for her was if this would kick me out of the clinical trial, that seemed to be working great on the rest of my tumors. She thankfully said no, that it might put my next dose on hold but they will figure it all out. Then yes I cried and said I just don't want this anymore...she looked like she was about to cry with me. But just as soon as I had my teary moment I apologized to her and said I am sorry I am strong and I will fight this too. She looked at me and said Julie we ALL know just how strong you are and no one will very doubt your ability to fight. So mom and I said ok lets do this.. where are we off to next? More hugs and on we went! 

We took the shuttle bus over to the main hospital meet yet another Dr. I will add to my ever growing list. Luckily for me Dr. Wonder was right he was great and knew his stuff. He and his team treated mom and I like family as soon as we arrived. They told us Dr. Wonder was their favorite and they were more than happy to have us. Now remember it was halloween and already almost 6pm, I am sure everyone wanted to go home just as much as we did but they surely didn't show it, they even gave us tons of candy! Dr. hmmm lets call him Dr. J explained the whole procedure that is know as SRS or gamma knife. He gave us every single potential side effect, short term and long term. He sat with us for over an hour and answered all our crazy questions. I had tons!! And then my great Dad came into the city to finally take us home.
So basically on Wed Nov. 6th I will go into hospital around 6:30am. I will get a metal halo type device fitted on my head, and screwed on with very small needle like pins, next I will have a brain CT with the halo on, then I will wait a few hours while they mathematically plan out the radiation. There are 4 tumors in total as of now(I had another MRI on Friday to get a closer look just to make sure they aren't missing anything). I will be awake for the procedure which will take about and hour and a half. Then I wait in recovery for a while to make sure I don't have any immediate reactions. Then I get to go home. I will have to be under 48 hour watch with someone around(Mom and Joe will take turns), to make sure I don't have any seizures. After that we will wait 6-8weeks and rescan to see if it worked. I wont go into all the side effects or things that can go wrong because I am confident that what ever happened my Drs. are on it and its not for us to worry about. 
Pray for me and family on Wednesday because I know your prayers are what is keeping us all going!!! NO sadness just positive thoughts. Love you all and thanks for all your constant support. 


20 comments:

  1. I always pray for you Julie...and will continue to do so! Your strength is truly amazing and inspiring.

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  2. Julie, you're an inspiration, & I've faced the beast myself. Keep it up!!!

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  3. I know you don't know me Julie, but I know your mom and dad. They are such great people and my thoughts and prayers are with you. You are a very strong young woman and I know you will do fine, especially with all the support you have your way. Love to you all.

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  4. Julie, you are an amazingly strong woman that is a true inspiration to all melanoma warriors worldwide:) I will be praying for you without ceasing...Show that beast who's boss!!!

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  5. Hi Julie, you are such an awesome fighter. Had this exact same scenario and treatment in June. It's not so bad :) hang in there, it is a very long day. I highly recommend bringing people that can make you smile and won't get on your nerves after 8 hours. On a positive note, I went back for my follow up CT and my tumors were completely gone, not even a shadow left behind. Praying you have the same outcome!!

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  6. Sending you positive vibes :)

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  7. Sending prayers to you girl!! I happened to stumble across your blog and I am so glad I did. Never have I met such a strong person that you seem to be! I will be your prayer warrior in this battle with this evil disease. I was told I had stage IIB melamona 2 years ago. Prayer is powerful and so are you!

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  8. Prayers will always be said for you. You are very strong and positive. We all love you.. Love Fran and Frank.

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  9. Julie-

    Just stumbled across your blog while researching Ipi and Nevo. I will be starting this same trial on 11/11. Can we email regarding advice you may have? I'm stage 3C unresectable. sharrel.paul@gmail.com. Look forward to chatting with you!!

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    1. Yes Shari I would love to chat, this is a crazy week but email me any time with any questions julienyc33@aol.com I more than willing to help!!! Plus I am the queen of side effects I've pretty much had them all lol!!

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  10. Julie Your in my prayers day and night. God bless you and protect you!!!! Positive healing energy sent your way.....

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  11. I am praying for you, sending very positive thoughts and a huge hug!

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  12. good karma....positive vibes...hugs, et al...:)

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  13. Hope your surgery went ok , speedy recovery. Thank you for the awareness you are raising, greatful I found your blog.

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  14. I am praying for you.God will bring you through.

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  15. Forza e coraggio,un abbraccio dall'Italia, ti seguo e ti sto accanto! :-)

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  17. Hi,

    I just stumbled across this blog and wanted to send you lots of healing thoughts and many well wishes. My mom passed away one month ago from skin cancer. It was a real eye opener and has lit a fire under me to keep a close eye on my skin. Being red headed and fair skinned I know the risks. So I am wishing you the very best.

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  18. Hi,
    I am wishing you the best. I hope your surgery went ok

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  19. Your positive attitude will take you far! Continue to be strong and show this beast you are going to never stop fighting! I hope you are doing well and look forward to your next blog entry...sendings lots of hugs to you.

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