Sunday, July 28, 2013

Still in Shock..

So the one thing that us warriors fear most has some how become my reality.. How did this happen, I mean I always knew there was a chance and yes it was like the rest, my biggest fear, but I guess like anything else you don't really believe it could happen to you. 

And it has and I think to be honest I'm not sure I have fully accepted it. I'm sort of just hoping to wake up and it all be a big scary dream. I haven't even wrote the words yet.. its like my fingers don't want to type it.. ok here it goes.. I have f***ing Brain Cancer. Wow! I'm in utter shock.

And one of the big reasons I'm in shock is that it wasn't even my scheduled time to have a brain scan. I just had one last month and got the ALL clear. Yes of all people I should know how fast Melanoma spreads.. but a month gosh! Well I guess maybe it was a blessing in disguise that Dr. Wonder got me into this study, because for the protocol I had to have a brain MRI within a month of my start date and I was just a few days shy. None of us expected it to show anything it was just another hoop to jump through for the drug company. 

I had my scan done on Thursday and I had no scan-xiety I was positive I was all good. But that Friday morning I woke up at 8:30am with a bad feeling waiting for the call. I remember thinking what if Dr. Wonder calls because if its him and not the nurse then I'll know. And sure enough an hour later my phone rings and not only was he on the line, my other doctor Dr. Magical was too. My heart dropped I didn't need the introductions.. the how are you doing.. I was like ok just say it tell me the bad news. "Your brain MRI came back with a few spots that are showing concern." A FEW no this is not happening right now. NOT AGAIN. How much bad news can a person hear in such a short span of time. I didn't even ask any questions I just listened, I listened to first the sadness in their voice at having to tell me this terrible news and then the hope.. uh with them there is always the hope. After hearing everything I just cried and told them I am scared. They said we know and its ok to be scared but then you need to fight because Julie you are a fighter, we know this! 

So thats the plan keep fighting. I found that my Dr. had pulled some very BIG strings to get my in this new trial and then pulled some even bigger ones to keep me to stay in it. (Usually any sort of new melanoma especially a brain tumor could have made me ineligible for the study). As my mom had asked him.. So you pretty much had to sell your soul to the devil? And his answer, "For Julie I would do just about anything!" Aaaah!

So starting Thursday as planned I will do the 12 week cycle of chemo.. and in 6 weeks I will get another brain scan. If the tumors(after reading my radiology report, which was a big mistake, there are 6 of them..yikes I thought it was only 2) are growing we will have to talk about radiation and/or surgery. 

Miracles do happen and I am in no way ready not to fight as hard as I can to stay on this Earth as long as possible. I have waaay to much to live for. The stats are grim to say the least.. but heck I have beaten all of the 'so called' Stats!! The stats of any of this happening should have been on my side and I totally blew those out of the water.. haaaa yeah I am still trying to have a sense of humor about it all! But seriously when this all completely sinks in I know the fighter in me is going to once again kick some serious ASS!!

I wanted to thank everyone for the prayers.. WOW I was so overwhelmed by the outpouring of support. There are good people in this world and I thank God everyday that so many of them are in my life. I wanted to give a special thanks  to an amazing friend of our family to reach out an offer me a wonderful gift.. Lets just say acupuncture is in my very near future. LOVE YOU ALL!


Thursday, July 11, 2013

Emotions Running High

It has been awhile since, I guess you can say, I was emotionally ready to write anything about my crazy life of all things Melanoma! But this post was needed in so many ways, mainly to get my head straight about all that has transpired in the last few weeks. 

I am just going to back track a little first about my love/hate relationship with my frenemy I call "chemo in a bottle", (to the medical world Zelboraf). You see this friend has been one of those 'people' who tend to treat you very very harshly but in the end seems to be able to shove a big fat 'I told you so' right back in your face and....THANK GOD!! 

I have been on Zelboraf for the last 5 months and as you have probably read, seen or heard me complain LOUDLY I have endured many many side effects while on this drug. However, scan after scan this drug has also proven its point.. hard work does pay off!!!
But now it has come time to say a bittersweet farewell to my friend and I can honestly say, "Zel buddy sorry you will NOT be missed."  

Before I go on to talk about my new adversary.. I know many people are wondering why my doctors suggested a breakup with Zel since he was showing some wonderful results. The reason is simple.. The plan was to only take Zelboraf for a somewhat short amount of time to get my tumors more under control and then to move on to another chemo called Yervoy, which is potentially less harsh on the body. However, my recent great scan results came at just the right time and my Dr. Wonderful was able to secure me a spot in this new clinical trial that has been showing to be extremely successful. 
And they will keep Zelboraf waiting around just in case my tumors need a friendly reminder that they messed with the wrong girl!!! 

So now it's out with the old in with the new...

New Clinical Trial:
Ok bare with me here as I am still learning as well, but the things that I do know about it equally fills me with so much hope and excitement, while utterly scaring the crap out of me!!!

The hope part comes into play in the statistically stand point.. it is WORKING for many people. 
The scared silly part is my whole life for awhile is going to change.. Because the commitment to this trial is HUGE!! Especially for me as I am still planning on working during this time as well.

So the plan is this... I will be involved in a research study that is combining two different types of drugs that has been showing great promise in the Melanoma field, Yervoy(Ipi) and Anti-Pd1. I will start the trial on August 1st after I undergo a few more tests to make sure I officially qualify such as: Chest X-ray, EKG, blood work, and a Brain MRI. And then once I am approved the schedule will be as follows: *All appts. will be at Memorial Sloan in Manhattan

Week 1: Blood work, meet with Dr., get an infusion of Ipi, get infusion of Anti-pd1
Week 2: Blood work, meet with RN
Week 3: Blood work, meet with RN
Week 4: Blood work, meet with Dr., get an infusion of Ipi, get infusion of Anti-pd1

Repeat this cycle 3 more times.

Week 12: Scans

Week 13: Blood work, meet with Dr., get infusion of Anti-pd1 only

Week 14: break

Week 15: Blood work, meet with Dr., get infusion of Anti-pd1 only

Week 16: break

Repeat this cycle for 2 years until either medicine stops working, side effects become too severe, or I become NED(no evidence of disease) and I decide I need a break!! 

SO basically to sum it up for the first 12 weeks I will need to go in once a week for blood work and/or treatment. After that I will go in once every two weeks for blood work and treatment.

My biggest obstacle and the one that is giving me the most inner turmoil at the moment is my job. It you don't already know teaching is my life.. it's my passion.. and I am not ready to give it up. It is the one part of my life that truly takes me out of my forever stay at "Hotel Melanoma" and makes me feel like I am just a normal underpaid..hehe teacher!!

However, and I KNOW I have mentioned this in the past, my principal and co-workers have been amazing through this journey so far and I am in GREAT hopes that something can be worked out.. Where as I will be able to get another 'combo treatment' of a mixture of my normal life and my life LIVING with Cancer.

Thanks for reading and holding my hand once again on this crazy journey. I love you ALL and remember PLEASE PLEASE WEAR SUNSCREEN!!