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!!!!!!!