Sunday, November 3, 2013

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. 

Wednesday, October 16, 2013

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.

Thank you for reading!!

Sunday, July 28, 2013

Still in Shock..

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

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

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

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

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

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

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

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


Thursday, July 11, 2013

Emotions Running High

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

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

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

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

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

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

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

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

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

Repeat this cycle 3 more times.

Week 12: Scans

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

Week 14: break

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

Week 16: break

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

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

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

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

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

Tuesday, April 2, 2013

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 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 ; )-

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 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 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!!

Friday, January 4, 2013

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!!