Friday, February 15, 2013

Life's a heck of a ride..


So to say a lot has happen in the last month would be an understatement! 

Lets start with the good, no more like AMAZING part. I got married to the man of my dreams on an absolutely gorgeous day. It honestly couldn't have been a more perfect and special day!!! Thank you to everyone who was able to come and help us celebrate.. because that we did ; )

Then we were off to paradise!! The honeymoon of my dreams, everyday was better than the last. The resort was huge, ALL inclusive and most importantly had a swim up pool bar with a shady cover :)- We did it all!! Snorkeling, climbing waterfalls, swimming with and RIDING dolphins and sting rays, couple massages.. You get the point! It was truly a magical vacation filled with many many wonderful memories. 
~Pictures to Follow~

Well as we all know life can't stay perfect forever...



Right after we returned from our honeymoon I had my two month scans for the clinical trial I was on and in a instant my world was changed forever. The day after a scan is always the worst because it's hard to do anything without thinking about that phone call and waiting to hear the all clear!! But to be honest that day at work I had a positive feeling and it was a pretty good day. My mom texted me in the morning that Dr. W was in meetings all day and we wouldn't get results until later and I was ok with that. Though when I was leaving work I began to think about it and I felt something seemed off so I decided to call my mom.. but she didnt pick up the phone and I remember thinking thats weird because I was sure she would be waiting by the phone for the Dr to call. So I decided to call Joe and see if he had spoke to my mom and heard anything but he said no and that he was actually home because he got out of work early(which never happens). So now I just have this nervous feeling like whats going on.. 
Now this part is very hard to write but I think for some reason I need to share it because I dream about it every night and maybe just maybe if I say it out loud it will make it all alittle less unbearable... Well I get home and walk into my house and see my mom sitting on my couch and I just knew.. I dropped all my things and said No please No.. Because as much as you think you try and prepare yourself for this news..this very moment, you simply just cant. I remember yelling just tell me just tell me and her crying. This is the imagine I play over and over again and again. I will spare the rest because none of it is pretty and to be honest I barely got any truthful information out of my mom. I mean can you blame her, how can you possibly be ok with giving this news to your own child..you just cant. At this point I just wanted to be alone. 
An hour later I got the call from Dr. W and heard all the crazy details. Many spots on your liver, spot on your spleen, and possibly on your lungs as well. I just cried to him and asked him a LOT of hard questions.. Lets just say he is a strong and amazing man. 

The next day me, Joe, and momma when in to see our team and discuss our next step. It was a tough visit. But the main question was how did it spread so damn quickly I just had all clear scans 8 weeks ago.. And the answer, which I already knew, is that Melanoma is a tricky beast! Then I had one last question for Dr. W.. how is this your job..how do you do this everyday?? and his answer was one I will hold in my hopes.. he said he has been doing this for over 15 years and every year his job gets easier because there are more and more treatment options being developed and tested as we speak, etc.,etc. Umm have I mentioned I LOVE my Doctors ; )

That same day I met with the radiologist to schedule a liver biopsy to of course be positive its Melanoma(which we were), and to see if I had the braf gene mutation(which is a good thing because it gives me more treatment options). 
And of course the day they had available was that Wed. Feb 6th.. my birthday. Ugh I cried again.. well I guess it worked because they immediately changed the day to the 7th and made sure I had the best surgeon scheduled, men hate to see girls cry..hehe

Well birthday was great.. filled with love, family, and friends!! I have so much love and support in my life. And I can't even begin to describe what an amazing feeling that is.

The following day the liver biopsy went smoothly enough, minus the pain I had after all my good drugs wore off.. but the pain soon wore off too!

On Tuesday I had a brain MRI to make sure the stupid melanoma didnt sneak its way up there too. LUCKILY that was all clear and I was beyond happy to hear some good news. I also received news that my tumor tested positive for  the BRAF gene..more good new! Thursday(yesterday) I was back in the office for more blood work, an ekg, and to set up my new treatment plan. This was a much more positive appt. than the last and we ALL left with a smile on our faces. 
Because just as fast as the shock and sadness came, the FIGHT set it!!! And it was stronger and more powerful than ANY tears I shed. This Stupid Cancer messed with the WRONG girl. And the WRONG team! AND I have sooo many many people on this determined team.


So the plan.. I will first be enjoying my last week before chemo starts in Florida with mamma bear visiting Grams for winter recess! Then when I get back next Friday I will start a chemo called Zelboraf.. it is in pill form, 8 huge pills a day to be exact, ugh. Wish me luck on swallowing those suckers. This is just plan A...we have a B, C, D, E and maybe even F to try next : )

THANK YOU ALL SO MUCH FOR READING THIS.. It was very, very difficult for me to write but if one person reads this and wears sunscreen or stops tanning it was more than worth it.. LOVE EVERYONE!!

7 comments:

  1. Julie...my name is Jolaina and I have st4 also that has unfortunately gone to my brain and lung along with 14 sub q tumors. Your story brought back so many memories of that day I found out I was st 4. We are fighters. Thank you for sharing and know your not alone in this fight. Keep posative and dont let the fear of the future dictate your today. I will be following you and know your not alone...

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  2. Sending you all my positively to you. Hearing the words relapse has got to be the absolute worst! I wish for you the least harmful but most aggressive approach. Your doctors and rest of the team along with your family are nothing short of amazing! Hang tight my friend! Your fight is long but you are not defeated! And yes, continue with this journal, I vow to wear sunscreen and am telling all of my friends the danger of the sun. You ARE changing/helping lives! I will be praying for you and sending you good vibes! (Anais'mom)

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  3. I love you, my melanoma sister. I cried while reading this until I got to the very end. Your will to fight is so obvious. Supporting you every step of the way from Virginia. I love you!

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  4. Thinking about you Julie. It brings a lot of memories back for me. I remember these exact feelings when we found out that Jillian's cancer progress to Stage IV also. fight fight fight! And we are all standing by your side as well!

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  5. CONGRATS on your marriage. Stay positive. Don't let this ugly beast win!!!

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  6. To you Julie & Chelsea, thank you so much for being the strong people and role models that you are! How unselfish of you to share your stories and hope that it reaches others...all the while going through your own fights and lives(congrats Julie on your marriage)....bravo, kudos, thanks and you are in my prayers. To Jolainajo, you are in our prayers as well, fight girl fight!!! I grew up in Florida worshipping the sun and my tan, never used a tanning bed but I know the damage is done...I am on your warrior side, warning everyone about the dangers! You all are truly amazing!

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  7. Hello Julie,
    From Australia my prayers and thoughts are with you as you embark on this fight of a lifetime. I follow Chelsea, Erin, Katie and Melissa. All amazing young women - making a difference, as you are dear girl.
    Hugs
    Rose

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