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. 

2014 continued...

Ok so I left off my last post with after my brain surgery and then being able to go back to work in mid-April and finish the year. 

Well in June I started to have some serve stomach issues that just wouldn't go away. I had a CT scan that showed I was having bad colitis that was probably from the chemo treatment. We tried everything to help it.. Steroids and more steriods.. A few infusions of medicine they use for people with Crohn's disease.. A very bland diet.. Stopping the chemo for a few weeks but nothing was working. It lasted the whole summer and then in September it finally just ended. Yes my body is cray cray, we still don't know why it suddenly started or ended but I'm happy it ENDED! 

Also in June they saw a slight spot on my right ovary. They said they weren't worried yet because it was so small that it could just be a cyst that will just go away. I wasn't ready to deal with more cancer so I just hoped they were right. They said we will rescan in 6weeks and I will have a sonogram then as well. My next scan still showed the spot so they are getting more concerned and of course so am I.. Another surgery and my last ovary.. I just didn't want to deal with another bump in this long awful road. We talked about waiting again for another 6 weeks since the spot hasn't grown but they are thinking it needs to come out and I will have to meet with my GYN surgeon again to see what he thinks. Now I have to be honest this all hit me really hard, I know I have stage 4 cancer and it's in my brain but knowing that you are taking away my chances of ever having my OWN child just was straight damn emotional!!! Yes I sort of gave up hope that being able to carry a child was probably not in my future because of all the chemo/immunotherapy treatments that I have had and continue to undergo, BUT the fact that you are forever taking away this option from me physically by taking away my last ovary..this was tough..I felt like I would be less of a person, less of a women, less of a wife...
Having children is always something I wanted..longed for..I think most women can understand that. Having you own baby in your arms is an unbelievable experience of true unconditional love(so I'm told and can only imagine). And my main Drs. know how strongly I feel about this so they suggest that I go see a Dr at Cornell about freezing my eggs. This gave me some hope, yes I could freeze my eggs for a surrogate!! 
So a week or so later I go to see this very nice Dr. and they run some tests, they decide that yes I can freeze my eggs but I don't have that many with only one ovary and it may not work. I left there very confused about what to do and then I went to see my surgeon. And he said freezing your eggs.. umm NO not an option. He said if there is cancer in your ovary it is not good to go 'poking around' in there because it could lead to the cancer spreading. Ok so not confused anymore just sad, very very sad. He also agreed that the ovary should come out, that he is about 70percent sure it is melanoma. After hearing all this I didn't leave the house for a while. This was just all getting to be too much. I didn't want to live like this anymore, all this heartache. How can one person be put through all this pain and be ok. I was NOT ok. Yes I broke...My fighter face just couldn't be found. And I am not a 'talker' I didn't tell anyone I broke, I just cried to myself at night. I said I wasn't feeling that well to my family and friends. I didn't know or maybe I didn't want to know how I could share this pain I was feeling with other people..not even my husband who I TELL everything too. I thought he was hurt by me too. I was sick of hurting people with my problems. Plus on top of all this one of my best melanoma friends was dying because of the melanoma in her brain. I just mentally gave up. 
It was now September and I went back to work and ended up having a very big class of 27 students. I felt like I wasn't good enough to handle all these kids everyday, last year I only had 18. How was I going to do this, get up everyday and live like I wasn't in my own bubble of struggle.
And then she died my dear friend died...yes I had many friends die of melanoma over the years that was very hard but this one was my support. I don't know many people with brain cancer and she was the one I went to with all my questions, my hopes, and my biggest fears. She was my rock. I knew if she could do it then I could too. Oh Brandi how I still miss you so much. So one night I just had a I guess you could call a severe panic attack, I called my mom and just cried and cried and said I don't know what to do. I told her everything and how I can't move forward. Luckily Joe was home and came up from the basement in hearing me crying and tried to calm me down. I was shaking and couldn't even focus my thoughts. My mom told me to take a Xanax immediately and she was coming right over. I told Joe how sorry I was for ruining his life and how he deserved better. It was all just terrible. My mom came and gave me the biggest hug, Joe told me he loved me more than life and I finally snapped out of it. I looked at them both and I KNEW they would do anything for me. And I realized once again how strong the amazing people around me made me. After that night slowly but surely my strength kept coming back. 
I had my surgery on Friday, October 10th. And by then I was feeling a lot better. I think I needed to break, I needed that night to let it all out, I hardly ever cry or complain or yell or scream. I never say why me..but maybe I needed to. I also broke down to my oncologist and told him how I had been feeling and he of course gave me even more strength, he told me to get off FB and social media for awhile and just try to live my normal life. 
AND that I have been doing. I have been going out and hanging with my friends, I went to Boston with my sister and my two wonderful cousins for a long girls weekend. I just got back from Disney World with my hubby and we had such a FUN time. I got my body scans back right before Christmas and there is no cancer to be found(maybe a little bit in my spleen still but its probably just dead cells). I had an emergency brain MRI in November because my left arm went numb and I had to be rush to urgent care and that looked great, cancer still shrinking and no new growth!! 
I had alittle stumble with having severe iron anemia, having a bad reaction to my treatment and getting kicked off my clinical trial, but my iron levels are getting better and I am on a new very similar treatment that is more spread out(once every 3 weeks instead of once every 2 weeks). And so far no crazy side effects from it yet. My class I turned out to love, all nutty 27 of them! I AM HAPPY.. I AM LIVING.. I AM LOVED.. I realized A LOT this year. I now know its ok to fall apart and to talk to people about my fears. I know that this journey probably will continue to be long and hard. I know that through everything I have the best doctors, a WONDERFUL family, and the most amazing friends.  
Thank you all for reading this, your support truly means so much to me. 

A Brand New Year!!! 2015 it's going to be my year ❤️

January 3rd, 2015

Well it has been exactly a full year since I have written in my blog. And it's not that I haven't thought about updating it time and time again.. It's just that I think I physically/ emotionally couldn't do it. I was in such great hopes last year that 2014 was going to be my year to have only amazingly calm and peaceful things happen.. Or as us Melahomies call it, I wanted to be 'boring.' For us boring health is that best health you can get!!!

Well I think I lasted being some what boring for almost two months. And then in February the intense and I mean intense headaches started to come. I waiting a few days but then they got so bad I knew I needed another Brain MRI immediately. The next morning Dr Magical had me come in to see her and get a full head scan. When she came back with the results she said well you are getting a limo a.k.a an ambulance ride to the main hospital right now. One of my tumors that was radiated started bleeding out and the blood was pushing in my brain, causing severe pressure. I would have to go and receive a few more brain scans and then meet with the top brain oncology surgeon Dr. Blue Eyes. It just all happened so fast I didn't even have time to be upset about this one. We all knew that melanoma spots in the brain had a tendency to bleed. Within minutes I was literally attached to hospital boards and moved into the ambulance. Luckily the drivers were very nice and even cute too lol. Once we got to the ER it was a mad house of patients everywhere.. And I mean everywhere.. I was first seen by the Dr oncall who gave me some meds for the headache and fluids to help me stay hydrated. Then I was put with my IV fluid drip bag right back into the waiting room. I was told I would be getting a room upstairs when one became available. This lasted until about 2:00am, when my mom just flipped out and said you have a young women out here in the waiting room with a serve brain bleed sitting in a chair for hoooours and if nothing is going to be done tonight we are going home. Well let's just say with in ten minutes we were moved to a very nice room on the neurology floor. That night mom stayed over and we just tried to sleep and save all the thinking for tomorrow. The next day I had a couple of different types of brain scans and then was able to meet with my yes another new Dr. We call him Dr. Blue Eyes, Dr Blue Eyes is a brain surgeon if you could ever imagine one, What a brain surgeon looks or sounds like that was him.. Yet he was also very good looking in a cool way. But the best part was that he was smart and kind and left nothing out. He showed us what the scans looked like and how he wanted to remove the two tumors that were very close together. He said that there was too much blood to know if they are growing bigger underneath or just heavily bleeding but either way he said actual brain surgery is our best option. I was terrified of the the side effects that he said can happen. I mean my brain is me, it's who I am, I was never the pretty one or the funny one, I was always the smart one... The one with a good brain!! Now not only have I let them send intense radioactive lasers through my brain.. I'm going to let them remove parts of my brain. BUT at this point what am I to do, there is nothing I can do but put back on that damn fighter face and say ok I can do this too. A few days later my surgery was set for March 7th. I don't remember much right after the surgery I know my family was there when I finally woke up and I know I was kept in the ICU for the first night. After I was showing to be stable enough to walk a bit I was moved back into a regular room. The second night was the worse night yet. I was feeling pretty good a bit foggy and stuff but nothing too crazy and I told everyone to go home and get a good nights sleep I will be fine there alone over night. Well as I was falling asleep I awoke with these crazy beyond painful knee and leg cramps. I called the nurses right away but they didn't know what could be causing it and I could tell they were very concerned and started calling all these Drs and x-Ray techs to come see me. They finally just ended up giving me a massive amount of pain killers and I was able to lay partially still for some leg scans. They told me later that they were afraid the cancer was traveling down to my joints. I finally ended up falling asleep with an amazing nurse sitting with me holding my hand. The next day the neuro team came in and said it was probably my head bandage wrap was on too tight but at that point I was feeling better and just said, take the wrap off look at the staples and sent me home pleeeease!! I just need my bed and my family. Well they did just that and despite some minor side effects that seem to come and go I am still here and still living. I had to take 5weeks off of work to recover and make sure all my normal brain functions were still normal. I was able to go back to work and finish up the school year before my next big adventure began... I will write more later I promise! Thank you for reading, I hope you didn't forget about me an my oooh so exciting stories. But seriously I write for many many reasons but mostly I write for myself and for me to get my story out there for others to listen to and hear what Melanoma is really about. I love you all please get your skin checked and wear sunscreen especially when skiing or snowboarding!!!!!!! 

What a Year!

First off just a quick update of the past two months. 

On November 6th I had brain radiation called SRS. There were four spots total that needed to be radiated. My surgeon was amazing but the whole process was pretty awful. As soon as I got there in the morning they screwed on the "halo" which was slightly painful, but I think the thought and the sounds of something being screwed into my head was worst than the actual pain. Pain I can handle, pain I am use to... But all this weird brain stuff totally freaked me out. After the halo was on I was taken to get a brain MRI, every uncomfortable with a two pound metal thing on your head. Then I had to sit in a chemo suite type room for about 7hours, NOT fun. Luckily I had my mom, Joe, and (even my friend Christina stopped by) for some distraction. Finally after they had all the mathematical stuff figured out for the radiation I was taken into this stark white room with all this high tech medical equipment everywhere. I had to lay on table with my "halo head" now screwed into the table itself so you cannot move at all. Then for about two hours, no one talks to you, but different doctors and nurses come in and out and take weird measurements of your head, then they leave and weird machines and stuff circle your head but you see nothing..(not even any cool laser beams or anything). And the whole time you are just hoping and praying that they are getting these measurements right and not zapping something important up there. I was just so scared and nervous lying there not knowing what was really happening and thinking omg they are zapping my brain right now. It was just a very not fun and freaky experience. Then you come out and they unscrew the halo which hurts so much more then when they put it on. And then you need to lay there in the chemo suit for a few hours and not talk and try to sleep. Yeah right.. sleep with throbbing welts on your head from the screw spots. Finally I got to go home and be under 48 care(thanks mom) in case I had a seizure or paralysis. 

Ok ok.. I know I made this probably sound more awful than it actually is but I honestly didn't like it one bit. However, most people I spoke to that went through it thought it wasn't so bad. 

Luckily, I didn't have any terrible side effects. Just had a 'fogging' head for a few weeks, some swelling and slight headaches. 

I was doing pretty good for the next few weeks, I was able to start getting my chemo treatment again, I had a chest CT and my lung swelling (from the chemo) was getting a lot better, and best of all I was feeling good. I had an amazing Thanksgiving with my family with tons of laughs and great food!!!

In the beginning of December I had my organ CT scan and had some great news and some 'bump in the road news'. The great news was that my liver tumors were barely visible and my spleen tumor was still shrinking. However, there was a spot on my ovary. When Dr. Magical called to tell me the news she was trying her best to not freak me out or get me upset since she wasn't even sure the spot was Melanoma. But my response to the news this time was that I am sort of use to these "bad news" phone calls and out of them all this one was by far not the worst. I said this I can handle. 

They of course had me come in the next day to meet with them and a gyn oncology surgeon... yup yet ANOTHER doctor added to my list. After a short discussion Dr. Wonder and the surgeon both agreed they wanted my whole ovary removed as soon as possible. Ok this was alittle bit hard to hear but I agreed. If there is a chance it is melanoma I want it OUT!!! My surgery was scheduled for the next week, December 10th. 

Luckily I got the call the night before that my surgery was the first one of the day and I should be at the hospital at 5:45am. The surgery went very well, I was in a lot of pain when I woke up but the nurses were great. They let my mom come in pretty soon afterward and let her stay with me the whole time in recovery. I do NOT do pain medication so I was able to convince them that the pain wasn't that bad(even though my god it was)and they let me get away with taking only Tylenol with codeine. I also convinced them that I am not going to sleep or rest in recovery and I am fine to go home ASAP. I was home on my couch by 12:00pm :) The next few days were pretty rough but remember pain I can handle. Sadly, we did find out that it was Melanoma..again hard to hear but it is OUT now and we move on. 

A week later I felt almost fully recovered and was able to move around pretty well. And most importantly to me I was able to be back at work. 

On December 19th, I was back at Sloan for my follow up brain MRI from the radiation. I was very nervous but Dr W said what ever the scans showed wasn't a final say on if the radiation is working, and that it can take months for it to start doing its magic. This helped us ALOT with the worry. However, the scans looked great and it was the BEST christmas present me and my family could ever ask for.. The tumors were shrinking and there was NO NEW growth(meaning no new tumors). YAAAAAAAAAY! 

Christmas was as you can imagine a wonderful time. The love of family is truly magically. And I have tons and tons of love coming from these amazing people. 

Last night I was feeling good and able to go out with some pretty incredible friends to help celebrate the coming of a new year!!

Now of course YES this has definitely been the most difficult year of my life but I have to remember all the wonderful things this year has also brought me. I got married to the most amazing person, I had two pretty awesome trips to Jamaica, I ran a 5K on chemo and raised over 10,000 dollars for Melanoma research, I learned who my true friends really are(there are sooooo many of you), and I gained a whole year of being blessed to live on this Earth and create so many wonderful memories with so many wonderful people. 

LOVE YOU ALL!!!! AND OF COURSE...DONT TAN!!!!

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. 

I'm doing ok!!

So I realized that I have once again been totally slacking in my blog writing.  A great deal has happened since my last post including the shock of my new diagnosis setting in and my life of fighting Cancer moving on.

I started the ipi/anti-pd1 trial on August first and received my first dose of this combo treatment. I felt pretty good afterward, no side effects for the first 3 weeks. My family and I even got to sneak in an AMAZING trip to Jamaica. I had a wonderful time and God kept me feeling good both mentally and physically the whole trip!!

The morning after we got back I was scheduled for my 2nd chemo dose. That night and morning I started having intense headaches, during my visit with Dr. Magical I mentioned the headaches and she order a brain MRI for that same day. They are very diligent to say the least at Sloan! But I was nervous as all heck. It was August 22nd, I was suppose to be starting work in less than two weeks and if the tumors were spreading or getting bigger that would mean radiation or surgery ASAP... Not the normal work life I was more than anxious to be a part of again. Yes its great having summers off as a teacher but not when all you have to concentrate on is cancer. I needed this scan to be ok, I needed to get back into the classroom, I needed to be around my co-workers and students, I simply needed to be NEEDED!! Luckily that morning I got the call that the tumors were stable and still to small to do anything about right now. However, you know me I can't go unscathed they did find that my pituitary gland was swollen as a result of the chemo and I may need to go back on steroids. This was Friday, by Sunday morning I was in the emergency room getting IV steroids because the headaches had gotten so intense. That helped for a few days then I started getting really high fevers and by Wednesday I was back in Sloan Urgent Care with a 103.5 temperature. After many, many tests I was sent home with high dose steroids and surprisingly Celebrex for the fevers. My blood test showed that my thyroid level was a little low and my liver enzymes were extremely high. Within a few days on the celebrex and steroids I was feeling much better. I was able to start school and begin working!!

Due to all these crazy side effects, along with a terrible skin rash(also a chemo reaction), I was unable to get my 3rd combo treatment. They thought my immune system was in complete overdrive and needed a break. I was a bit sad and disappointed... I need this chemo and I felt my body was once again letting me down. BUT my Drs. assured me that my body is not letting me down it is doing its job just a little too well and maybe just maybe it means its working!

Two weeks ago my liver levels started to finally go down, and though the rash did flare up a bit again in between it started to improve in time for my 4th and last combo dose treatment. I felt ok for a few days afterward and then I started to get the headaches again. I was brought back in for more test and they found that my thyroid levels are continuing to lower.. low enough that I was put on thyroid meds the next day and will meet with an endocrinologist for further testing.

So now that we are up to date...looking back on the last few months, I am doing OK! I am here, I am working, and most of all I am living. I'm not letting these little things get in my way.

Next week on the 23rd I will have CT scans to see if the treatment is working on the tumors in my liver and spleen, and of course see if there is any new growth. To say I am anxious and nervous is an understatement. But I am NOT giving up hope. I will also have my 1st single dose treatment of just the anti-pd1 chemo. It will be another long day at my second home, Sloan, but I know my mom and Joe will keep me in good spirits as usual.
PRAYERS WELCOME <3

Thank you for reading!!

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!

AND I HAVE TO OF COURSE END WITH.. WEAR SOME FRIGGIN SUNSCREEN!!!

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!!

A Tough Month..2 years in the making!

So again I have have to apologize for not writing in a while it has been a tough month for me physically and mentally. So different than this month was last year. Last year on March 31st I was celebrating my 1 year cancer-versary. It was a very big milestone for me because it was a hard year. This year on my 2 year cancer-versary I didn't even bring it up, mention, or remind anyone of it because this year I just couldn't bring myself to celebrate something that has taken me and my family's life by storm. 
Am I glad that I am still here fighting two years later...that's a given, but Am I disappointed and deeply saddened that this year came with a stage 4 diagnosis and a "statistical" prognosis of having a 15 percent chance of living in the next five years..YES of course.. And I'm sorry that is just something not worth celebrating!!  

Well as I'm sure most of you have read in my FB posts, 'my chemo in a bottle' has not been so kind to me to say the least. I have been very very sick and in and out of Sloan Hospital more times than I care to even mention. 
But I am still not giving up on it and my Doctors are not giving up on me :) As of yesterday we have yet a new plan. Starting yesterday (after I could barely get myself out of bed without help and started getting rashes all over and a high fever again, even though I hadn't taken the chemo since Friday morning) the plan is to take a low dose steroid and a couple of Ibuprofen every morning with my first chemo dose, then take chemo again at dinner and at night tylenol. If this doesn't work we will try the steroid twice a day. So once again fingers crossed!! Because if it doesn't I not sure there are many other creative ways we can come up with to make my body handle this drug.

And I guess since this seems to be a bit of a "Debbie Downer" post I would also like to address another issue that has been bothering me lately. I am sure my warrior friends can relate and even those with other illnesses or that have close family members with illnesses(right Claudia)! 
Although I know most of these people have the utmost best intentions at heart.. I just can't handle any more advice or opinions on my treatment. Remember everyone I am the one living with this disease so BELIEVE ME I have well researched all my options. And I have FULL confidence in my amazing team of doctors(which are MANY) to continually fill me in on all of the new proven ways of treating Melanoma. I sincerely appreciate all the books, names of other doctors, articles, email links, natural healing methods, supplements from Germany, etc. etc. that I have been receiving in the last few months but its honestly too much. Right now I am simply just trying to get through each day, but I assure you I am doing all things possible to beat those damn statistics!!! I truly hope I have not offended anyone by saying this because like I said these people are people I love and care for and who just want to help in anyway possible. 

Well on that note what can I say to end this somewhat depressing post..lol Well maybe just that I am still laughing out loud even through my tears.. I am still here!! I am still soooooooooo very hopeful that Melanoma is about to get it's ass kicked!!! 

And of course that I truly love you all and appreciate everyones continued prayers and support.. even when you have to hear me vent just a little ; )-

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!!

2 Weeks!

Well I can't believe it's finally almost here.. Our wedding day! 

If you remember Joe and I first started dating just 4 months before my cancer diagnosis. So even though my life at the time was no where near "ordinary" my love life was straight out of a fairytale.. I was literally knocked off my feet by the unconditional love and support Joe gave me and continues to give me each and everyday. And in two short weeks I get to walk down the aisle and marry my prince. 

Now has it all been perfect, hell no, relationships are hard and wedding planning well its pretty darn stressful. 
However, we are fighting the black beast together so come on everything else in comparison is NOTHING. Our lives are different now, the little things aren't as 'life threatening' as they use to be. Did I still get irritated when the invitation came back printed wrong.. of course. Did I blame it on Joe, most likely! Lol But that stupid C word forced me, us, to see the big picture in life. And in this picture I am getting married to a wonderful man, whom I love with all my heart and soul. 
Joe, you are my rock... my gift from God.. my soulmate.. and my best friend. We will walk through this crazy journey called life together, by each others side, hand in hand.. through sickness and health. Because no matter what our future holds we will never be alone and that means everything!!! 

Thanks for reading and wish us luck on our BIG DAY. Love you all and can't wait to make some amazing new memories very soon with my family and close friends!!

A quick thank you!

I was given this quote awhile ago from one of my awesome molemates and I just wanted to share it will all of you... Because honestly I would be LOST in this journey without the support of my family and friends. I have been having a rough few weeks with being sick, stressed, and a bit sad...but you all have been so wonderfully supportive whether it be through a quick text, phone call, email, or post that I cant help but feel loved <3. 
Just a short update I took my Dr.'s advice and stayed home yesterday to rest and sleep. Today I still feel exhausted but not as dizzy and nauseous. Straight from work I took a nap and plan to do the same for the rest of the week. If my body needs rest then thats what I have to try my best to give it. Plus I have a big night planned for this Saturday. It my bachelorette party and I am not canceling it!! I still need to live my life to the fullest I can and continue to create happy moments with my amazing friends. 
Well remember I love all of you guys and all your support needs the world to me : ) As my mom tells me all the time.. WE ARE IN THIS FIGHT TOGETHER!!

Keep Smiling!!

When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile.  —–Unknown

I thought this quote fitting for how I am feeling today. I have been really pretty great these past few months in terms of my health and my positive thinking, but as we all know that can't last forever... because unfortunately life will always give you a reason to cry. I guess it's how you handle those moments that really matter. This month is what I like to call my "busy" month... When I am pulled back into the world of Cancer. Am I luckier than most of my warriors who aren't given a busy month because every day for them is "busy?" Yes but does it always make it easier.. not completely. 

Well my month started as usual with my skin check visit with my dermatologist, and I'm happy to say this was my first visit where we both felt I didn't need any biopsies. I say both because my doctor greatly takes into consideration my feelings on removing any marks/moles on my body. If I say I am worried about it, it's GONE end of story! 

Next I had my CT organ scans I have to say leading up to them this time I wasn't as nervous as usual(probably because I have been too busy with work and wedding planning to think much). However, when that actual day comes around it NEVER gets any easier. I wish there was someway to help my fears but so far I haven't found any way to make this day any less utterly terrifying. Straight from work last Wed., in the blizzard no less, mom and I made our way into the city just in time to enjoy my lovely chilled cocktail of scan juice..yuck. Nurse comes in and I tell my whole vein story per usual.. I can only use one arm.. my veins in that arm hate me.. the best spot is my poor used and abused hand..yada yada yada. Well lets just say he sure added to the abuse part of my hand because he ended up not getting a good line in, which led to the radioactive dye infiltrating the vein during the scan. NOT FUN! It caused me not only be in a lot of pain but to become very sick the next two days after. Oh the joys of tanning huh!! 

BUT being sick wasn't too bad when you get the call that the scans are still showing No Evidence of Disease. Then at least I was able to be sick with a very huge smile on my face : )

Lastly, is treatment day.. which was yesterday. This is always the most dreaded for me because on this day I am truly a cancer patient. I am that young lady in the chemo suite with an IV drip in her arm... 

Well it started out searching for a good nurse to take my 'multiple' vials of blood, which went very well.. thanks Krystal my new favor blood sucker. Next came usually my favorite part, if you can have one in all this, my meeting with my doctors because I usually come out of these appts. feeling very optimistic. However, this time was not really the case. First off my favorite research nurse, Nurse Motherly, is no longer working in this location.. Yes Im growing to like her replacement Nurse Gretchen but still she was there from the beginning : ( Secondly, Dr. Magical who always brings a smile to my face was replaced by Dr. Nice who I like but is just not as 'Magical' per say. And in our conversation he happens to mention how my scans looked good but my lungs showed a bit of inflammation though nothing we need to worry about right now! WHAT, have you met me.. telling me not to worry is like telling me not to eat.. umm its going to happen. So of course I told him I wasn't satisfied with that answer I need to know more, what does this mean, didn't I get the ALL CLEAR scan call?? Well I think he majorly regretted telling me this tidbit of info but the damage was done. So when my main doc., Dr. Wonder came in he knew I wasn't happy. He explained that this could just be a side-effect from the Ipi(chemo treatment), or its just spots that are on my lungs from being sick in the past, etc, etc. Of course he doesn't actually say or it can be signs of something to come. BUT of course that is all I am hearing because when you have Melanoma all you ever have in you is fear.. hope and fear.. So now I just have to wait for my next scans in 3months to see if the so called "spots" stay spots, disappear, or.. and I'll just leave it at or.

So did I choose this moment to cry nope Mom and I went straight to Bloomingdales, and I had a reason to buy this gorgeous.. slightly expensive necklace, because hey you only live once right!! After that I held my head high and went in for my chemo treatment and laughed and joked around with the wonderful people who work there, whom I've come very fond of for making a terrible experience a little less.. terrible. 

Ok ok so no one is perfect, I might have went home and shed a few tiny tiny tears. It happens. But as the saying goes for all the hundreds of reasons that life keeps giving me to cry it gives me a thousand more to smile. 

For instance, through all this craziness this month I was able to go to Key West, FL to celebrate a gorgeous wedding of two amazing and very dear friends of mine. I was given another three months, despite the inflammation, to live my wonderful life disease free. Also, I have the most amazing fiance in the world, whom I get to walk down the aisle with in two short months. I have a great job that is understanding of all my appts. and sudden sicknesses. I have incredible parents who would do anything for me, my mom who has never ever ever missed one of my appts. and holds my hand and my heart through it all. I have amazing friends who helped me raise over a thousand dollars to my Melanoma fight for a cure fundraiser. I unfortunately am unable to make it to North Carolina tomorrow for the walk because of my treatment schedule and feeling very weak and tired. But I am there in spirit with all my fellow warriors who have also raised tons of money and awareness!!! LOVE U GUYS : ) And lastly I am thankful for all of you that are reading this and always supporting me. 

Jody, Jen, Tracy, Pauline, Nancy, Irene, Cliff, Tim, Maspeth Lions, Diana, Richard and Lorraine, Ann Marie, Jules, Maspeth Knights of Columbus, and my parents. YOU ALL ARE HELPING US GET ONE STEP CLOSER TO FINDING A CURE AND FOR THAT I AM FOREVER GRATEFUL!!

If you would still like to donate you still have time please visit the below link.. thank you!

http://www.aimatmelanoma.org/en/aim-for-action/1158/1159/charlotte-2012/4784.html

GOT PINK??

It is Breast Cancer Awareness Month. So be sure to get your PINK on!! And of course get those precious boobies checked ; ) 

Yes I know what your thinking.. Don't I usually go on AND on AND on about Melanoma, the BLACK beast?? Well guess what cancer doesn't discriminate on what color ribbon it brings into your life so why should I. What ever type of Cancer you have or support we ALL feel the same pain and experience the same fears. We warriors are all in this fight together because in the end we all have the same dream.. A CURE! So this month I show my support for those who are kicking this ugly 'pink' disease in the A$$, especially my amazing family friend Kathy Carione AND my incredibly strong and invincible Grandma, Esther Lambert. These two women are true survivors in all sense of the word. LOVE YOU BOTH!!


I also wanted to tell a story about an email that I received today from an old friend from college. His email truly touched me in many ways but it also made me realize how Skin Cancer is dramatically on the rise among young adults. It seems like everyday more and more people are hearing those dreaded words, You Have Melanoma. I don't want to go into too much details about our private conversation but I did want to say that because of people out there with wonderfully big mouths like us in spreading awareness where ever we go, to anyone and everyone who will listen we just might be saving a life or two. Because you never know who will be listening to our rants and raves at just the right time!! 

MY POINT: WHAT EVER CANCER OR DISEASE THAT YOU HAVE OR SUPPORT IN WHICH EARLY DETECTION CAN SAVE A LIFE, SPREAD THE WORD AS LOUD AND OBNOXIOUSLY AS YOU CAN!!!!! (PINK, BLUE, or ORANGEADE) WE ARE IN IT TOGETHER.

I'M BACK!!

Ok so maybe my break was a little longer than expected but I can say one thing, I NEEDED IT!! I'll try to fill you in on the last couple of months as short and 'sweet' as I can. I started my summer off working for a nearby summer camp for 4 weeks. I was very nervous at first because I would be outside for a lot of the day and as we all know I have been fearing the sun since my diagnosis, but if I was going to truly "Live and NOT Just Survive" I needed to get over my fears. So I put on a hat and lots of sunscreen and guess what I was fine, I was more than fine I was pale and I was happy : ) 

Then in the beginning of August I started my Cancer Patient role again. I first started with Dr. Hottie my Dermatologist, I had two moles removed and both were benign(yaaaaay). Next I had my scans, this time I had both a body CT and a brain MRI. The visit went smoothly, I was able to have both scans done in the same day. Scanxiety was at an all time HIGH but I am very happy to say that both test came back CLEAR!!! (insert happy dance!) Then I had my 3 month treatment, we had a few glitches with my blood and it turned into a nearly 12 hour visit, but in the end I was able to get my treatment and my usual pep talk from my doctors so all was good.

Now here comes the best part, the part where I was truly LIVING it up!! My Trip to Aruba... Yup me a Melanoma patient at a tropical island, I thought that side of me was over.. NOPE. Did I mention that I was living not just surviving yet?? After my summer camp job I felt a little more confident of my ability to be in the sun and stay pale and beautiful ; ) Well Aruba was no different. SUNSCREEN PEOPLE it works!! And for me I added in a large hat, a cabana umbrella on the beach, and "trolling it" under the bridge(there was a walking bridge over the pool that I liked to hangout under when I felt the sun was too much so we called it trolling lol). I even went quad riding on the insanely rocky, muddy, bumpy cliffs of this 'Happy Island'. I was scared out of my mind, almost died a few times, and dirty as all heck but it was worth the crazy amazing experience! A special thanks to my parents for taking us, it reminded me once again that "Life Is Wonder!"

 

NOW I am back at work with a new class of misfits, I mean lovely children, and just trying to live my normal life. While in the meantime praying my little heart out for my Melanoma Warriors, because there are still too many of us who don't get to jump in the sand. 

Love you all and remember get your annual skin checks!! 

P.S. Jax is also doing great and still continues to give me love and pure joy!