Saturday, June 13, 2015

Is Summer Here YET??

Well I know.. I know it's been another long time since I have written but life gets in the way!! What can I say. Life for me hasn't been too 'normal' over the years. But speaking of years it has been over 4years already since I was first diagnosed. And I'm still HERE! 

Just a few updates from my last blog post. I have been doing very well in terms of the cancer in my body. Nothing new has grown and liver and spleen continue to shrink or maybe is almost gone. My brain is looking ok too right now. I have another body organ scan on July 1st and next brain MRI(if all goes well) won't be until October 8th. So we just keep praying!! 

However, the immunotherapy treatment that I have been on has been making me feel pretty sick and completely EXHAUSTED!! I have still been working as a teacher and with 27 3rd graders my body is sort of saying this might be too much. There are some days that I just can't get out of bed, either my joint pains are very bad, or I'm just so tired I can't physically move my body. So I have decided along with my Drs. and family that I need to take a year off of teaching. And if you know me this was a very very hard decision for me to make. I LOVE teaching!! But I feel so guilty for missing so much school lately that I think I need to finally listen to what my body is saying... Please Julie give me some time to just rest and relax!!!!!! My school has been wonderful with it and I will take a year medical leave. 

And two days ago might have sealed the deal in me finally saying ok yup I need it. So on Thursday(day after my treatment) we had field day at school. It was a very hot and humid day in NY and I probably shouldn't of went in but I didn't want to let the kids down. I'm usually a pretty active person and love field days and stuff. I didn't feel well most of the day but got through.. until the extremely hot bus ride back to school. I knew it wasn't looking good for me and so did the kids, they were very nice and trying to be helpful. Saying to the other kids don't talk loud, rubbing my leg, telling me to breathe, etc. Yes they are pretty wonderful! As soon as we got to school I got up quick to get out of the bus before I passed out but I only made it to the sidewalk. And down I went, luckily my amazing friend/co-worker Jody realized and literally caught me just in time. But I fainted in front of the kids. Jody had some of the parents bring the kids inside quickly and called for the school nurse to come out immediately. One of the parents had a folding chair and I was able to sit on it. The nurse got me ice packs and cold water. They called my husband who came right away. But when they tried to have me stand to get into Joe's car I went down again and my eyes started rolling in the back of my head and I was becoming a bit unresponsive. They called the ambulance ASAP. Of course the police and fire fighters come first.. It was all just craziness, but that is my life right! I eventually made it to the ER was given IV steroids and fluids, got a few EKG's and tons of blood work. I threw up a few times and had a very bad headache but after a few hours I started to feel like I just want to be home. They wanted to keep me over night but again I just wanted to go home. They made me sign a crazy release against there wishes form and finally let me go. They were in contact with my team of Drs at Sloan and I promised that if I was feeling worse I would go straight to Sloan's ER. I didn't feel good that night but the next day I felt a bit better and knew just like everything else I would get through this too. 

Now it's Saturday and per Drs advice I haven't left the AC and the couch. I'm going to take it easy and then come Monday try and get through the last 6 days I have left of work. I hope I have enough energy to make it. Prayers are like always more than welcomed!!! 

Thank you for reading and please remember to wear sunscreen. I PROMISE you a tan is NOT worth any of this. 





4 comments:

  1. Hi Julie, I'm Lindsey! I have a question and would love to speak with you. Could you please email me when you have a chance? Thanks so much, I look forward to hearing from you :) lindseyDOTcaldwellATrecallcenterDOTcom

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  2. Hi Lindsay. You might want to look into a company called Provectus out of Knoxville, TN. Their website is PVCT.com. They are currently running Phase 3 Trials or Melanoma world wide and also offer a Compassionate Use Program in the U.S. at these locations.

    St. Luke's Hospital and Health Network, Bethlehem, PA;
    M.D. Anderson Cancer Center, Houston, TX;
    University of Louisville, Louisville, KY;
    Sharp Memorial Hospital, San Diego, CA;
    Melanoma Institute Australia, Sydney, Australia;
    Princess Alexandra Hospital, Brisbane, Australia; and
    Royal Adelaide Hospital, Adelaide, Australia.

    Their PV-10 drug is based on "Rose Bengal"; and industrial dye which has been used in the medical community for decades. From what I have read, after a single injection into the tumor, PV-10 ablates the tumor and also offers an immunilogical effect with also destroying distance tumors (other tumor that were not injected). There are very little (if any) side effects to using PV-10. Since it also seems to work on ANY tumors, they are currently beginning FDA Trials for the Liver. Other trials will soon follow.

    Parties are encouraged to contact Peter Culpepper at:

    E-mail: pete@pvct.com
    Blessing to you and best of luck.


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  3. I read the sadness on your friends Facebook and the curiosity got the best of me because you were so young and beautiful. After reading your blog and finding out the cause of your departure, I am really heartbroken, even though we never met. Melanoma is no fair. It's evil. And I am so sorry for you and all of your loved ones who were affected by it. May you fly with the angels and forever live painfree.

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