Friday, January 27, 2012

The four letter word...

Sorry I sort of fell off a bit with writing, I haven't been feeling so well these last few weeks. But finally getting some of my energy back and thought I would take advantage with a blog update...
Ok so I left off on Month 7 - October

This month for me was very very special.. I have mentioned a few times that I have wonderful boyfriend but I am not sure that I talked about why he is so wonderful. Joe and I started dating at the end of October of last year.. now not going into too much detail but I have been through a lot of ups and downs in my past relationships and when we met I really wasn't looking to get into another one, but as you can see he won me over. And the day I knew he was "the one" was unfortunately the day I was diagnosed with Melanoma. I have talked about all the terrible things that this disease has brought into my life but the kindness and compassion I have received(and DO receive) from others continues to be my shining light, and Joe just happened to shine one of the brightest. He has truly shown me how to love and be loved unconditionally..
As I have stated before Joe and I had only been dating for around 4 months when I was diagnosed, we were just beginning to get to know each other when the person that I was, good or bad, would be changed forever. I can honestly say I am not the same Julie I was before cancer, then my biggest worry was...hmm I cant even think of a worry worth mentioning, now that I guess I have seen what real worry is all about.. those of you who have or have a loved one with cancer or a terminal sickness knows what I mean..But this worry like it or not we are stuck with, facing it head on.
So finding myself in a situation that most guys would run from and run fast, I understood that this may be the end of my new romance. The fun loving, carefree Julie that Joe started to fall for, quickly became sad, scared, and well lets just say not so "fun"anymore. Over night he found himself dealing with a heck of a lot more than he had ever bargained for. However, Joe didn't leave, he didn't go running... Joe didn't even blink an eye. But instead he held my hand, looked into my eyes and said this journey we are fighting together. And as much as I pushed him away and begged him to go, go and have a life that I may never be able to give him, he stood his ground. He made me a promise the day I found out that my cancer had spread, and though it was maybe the saddest day of my life, Joe made me find a bit of hope.

And on a Sunday morning in October 2011 almost a year from the day we met he kept his promise. He got down on bended knee and asked me the one question that I felt with all of my heart I was ready to answer without a single doubt in my mind.. Julie Ann Abramaitis will you marry me?

Joe you are and continue to be my light in all of my sorrow, you allow me to cry on your shoulder in the middle of the night, you allow me share my deepest and darkest fears and worries.. Joe you simply allow me to be me.. the new me! YOU are my gift from God and I love you with all that I have...

Tuesday, January 17, 2012

Why I love my job!!

I just want to start this post off by thanking so many of my family, friends, and acquaintances for not only reading but sharing my journey with others...when I hear how my story has touch your lives or even better has gotten you to make an appointment to get a skin check, I truly feel happy. Now when I am feeling down or sad and , yes at times, wondering why me..I have an answer. Maybe God has given me this terrible illness for a reason, maybe just maybe this is my purpose in life, to help educate others.             

Because skin cancer is NOT just skin cancer!!

One of my favorite posts:
"I'm sharing an enlightening story about one of my sororrity sisters who was diagnosed with stage 3 melanoma!! I truly admire her strength and bravery through out this whole process, as well as appreciate her sharing her thoughts and life on this matter!! If I can send any message at all, be proactive and get a full body scan every 6 months!! Thanks to Julie I finally made an appointment with the derm today and did infact have a questionable beauty mark that was sent to the lab. Life is too precious to waste on tanning salons and or thinking your invincible!! We have health insurance for a reason, use it wisely. Thank you Julie for opening up my eyes wide!!" 
~Cory Brody

Month 6 - September
Speaking of educating, before I knew it September rolled around. And for the first time I wasn't dreading the end of summer; I was actually happy about going back to work. For me this was a chance to actually start living again. I just had gotten my clean scans, which means I am at least Cancer-free for the next three months, and my next treatment would also not be for another 3 months(since I was now done with the intensive treatment). Three months may not seem like a long time to most people, but at this point I was taking it as a new lease on life. I had spent the last 6months in "cancer-land" and I was ready to take a much needed break. Now I had something else to focus on...being a good teacher! Im not going to lie I was very happy and excited to go back but also a little nervous. What would everyone say, did the parents of my new class know, would they question me about it, how would I respond, would they question my ability to teach, would my principal and co-workers treat me differently..and the list goes on. 
However, NONE of this happened. I was welcomed by all with open arms. The parents who knew told me that they were there for me if I needed anything and how happy they were that I was back and feeling good; and not one person said a word about it affecting my teaching. My principal was extremely good about me taking days off for my various Dr. appointments. And before I knew it I was back to my old self and back in my old routine.. ok yeah I was more tired and worn out at the end of the day than I use to be and I did have to cut back on doing after school teaching and tutoring. But just being around these wonderful children was probably the best medicine I could have received. They didn't see me as being different, they just see you as being their kind and great(hehe) teacher! And my class this year is very overly affectionate and, yes maybe a bit clingy and needy at times, so in other words they are EXACTLY what I need. When I am in the classroom I have no time to worry or even think about myself, I have 25 little people taking ALL of my time and full attention : ) 

AND this is why I truly LOVE my job and my school for always being kind, supportive, and very caring!! 

Thursday, January 12, 2012


Month 5- August

For my third lovely trip to the blood suckers and chemo suite Joe was able to come with us and finally experience all the FUN first hand. It started off ok with the blood suckers, they took the blood from the top of my hand, which turns out to have my best vein! Then during the 3 hour wait for the mixture I finally got a chance to meet my friend Chelsea, whom I have talked about. Since she is from a different state this was the first time we had a chance to meet in person. She happened to be getting her scans done at a near by Sloan center, yeah not the most fun place to have our first "date" but as I tell my kids.. you get what you get and you don't get upset! And upset we were NOT, it was like we had known each other for years. We talked non-stop with her and her mom(because we both are lucky enough to have amazing Mommas who wouldn't even think of having us go to any of these appts. without them!). It was just so nice to finally be able to talk to someone face to face that can relate to exactly what I am going through and feeling. Plus we got to help distract her from the nasty scan juice that you need to drink before your scans. Even though we only had an hour to talk, it was by far the best hour I have had at Sloan EVER!

And thats were the fun ended.. after that we went back to the chemo suite for my treatment. Since the blood test was taken from my hand I was very happy to inform the nurse that I saved my arm vein all for her, however, she insisted on trying to put the IV in the side of my wrist. Well lets just say that didn't work out so great, as soon as she put in the needle I felt a pain like I have never experienced before(and I have been through ALOT of pain). I immediately started screaming on the top of my lungs "GET IT OUT, GET IT OUT," the entire chemo suite heard me but all the "not so bright" nurse said was its ok I have good blood return. It was so painful that I couldn't even talk to tell her what was happening so I tried to point at my hand. As soon as I started to point the assistant nurse came flying over and grabbed my hand down, thinking I was reaching to try and to put out the IV on my own. I was finally able to explain through tears of pain that my hand was pounding and blowing up(which no one could see because it was still wrapped from the blood test). OMG what a scene it was, nurses rushing in, Joe and my mom thinking I lost my mind, me screaming bloody murder! As it turns out she went through the same vein as the blood suckers did and hit a nerve.. I ended up having all the nurses in the chemo suite calling me "The Wolverine" and maybe permit nerve damage to my wrist and hand...ooh the FUN just never ends! 

Fourth Treatment
Three weeks later me and mom are back again for the fourth treatment round. After the drama last week AK(dr. assistant), told us to try and see if we can get an IV line put in before the blood test so that we can use the same vein for blood and treatment. What a great idea because there was no way anyone was going near my hand or wrist, which was still in severe pain from the last time. The nurse's said they would do it and this time I only had to give 4 vial's of blood, yes I asked them if there was so mistake, but they say thats what the order read and I was NOT arguing. I had actually been up all night with really bad stomach pains and diarrhea and was still having it that day so was unable to eat or drink the massive amount of water and gatorade I usually need to drink before a blood test. It was all going so smoothly, I was so happy! So when I went in to meet with Dr. Magical I was in a pretty good mood, and after a little chit chat I told It was that I only had to give 4 vials today and good thing because of the diarrhea I have been having.. AND at the word "diarrhea" she was like what Diarrhea!! And then at that second the research nurse walked in and Dr. Magical was like oh you just came in for the good part she was just telling us about her diarrhea. I thought ok haha funny, but then the research nurse was like, Diarrhea!!! And im just sitting there like what is so friggin exciting about my Diarrhea, then it clicked, Diarrhea was the main side effect of the wonder drug....which meant I was probably getting the GOOD STUFF, and not the placebo!!! However, it also meant I was unable to get my 4th and last intensive treatment because it would make me really sick and it could cause colon disease. It was very bitter sweet, happy that there was a good chance I was getting the drugs, but not good because I didn't want to miss a round of treatment of something that may help me live longer. I didn't have a say in it either way so after taking my wonderfully placed IV line I was sent on my way..though not without A LOT of meds..ugh! AND I was put on a BLAND and I mean BLAND diet of only bread, dry pasta, bananas, plain chicken, and plain potatoes for 3weeks, along with two types of steriods and about three other stomach medicines. They said without all that the diarrhea would continue and get worse and worse. Yup another delightful trip!!

A week later, I'm back for my scheduled organ scans, the first one since I began the treatment. AND I was so frigging nervous, not only was I getting my scans done, I was meeting with my head Oncologist a few hours after to get a physical and the scan results. Usually you don't get your results that same day, and you would think it would be better not to have to wait overnight or a few days for the results but I tell you those few hours waiting were HORRIBLE. Just knowing that the Dr. would be looking you in the eyes in just a couple of hours and tell you your faith is just completely nerve-racking. All I could think about was how he would do it, would he come in and examine me first and then put out the 'terrible news file' like my last Dr. did. Would I be able to hear it in his voice or read it on his face, would he look at me with pity, etc., etc. 
Ok I getting ahead of myself let me first explain what happens during a scan: you can't eat or drink anything for a few hours before the scan and then you have an hour to drink this large delightful "cocktail" that tastes awful, then you need an IV line put in for the contrast dye, and lastly you get to lay still in a tube and feel like you peed yourself when the dye flows through your veins. So this experience to begin with is not so pleasant. After all that fun stuff we waited extremely impatiently, I might add, for the results. And they ended up taking much longer than expected, so of course I immediately thought it meant bad news. When they finally called us in I was so nervous I thought I was going to faint(it didn't help that I had nothing to eat all day because of the scan drink and my stupid bland diet). After what felt like HOURS sitting on the table, though probably only five minutes, Dr. Magical(my most favorite Dr) walked through the door  and immediately gave a THUMBS UP! Honestly what at a great way to give results, I didn't even have time to read her voice or her face or stare at that file wondering what was in it..We were so happy and relieved that we all started hugging and crying!! But of course I cannot have a trip to Sloan without some sort of drama, so then she says well the wonderful news is there is no sign of Melanoma and, of course there's a AND, the small tiny not so good news is that the scans showed a possible blood clot in my groin area. Huh? A blood clot seriously? Well good thing she and Dr. Wonder thought the same thing, that it was very weird and extremely unlikely that I could have a blood clot there because I am young and very active. That they think it is just a mistake on the scan..pheww, However, she said since we are not completely sure you need to stay and have a full MRI with dye contrast done, and the earliest we could get you in is 6pm, mind you it is only 3:30pm and we have already been there since 8am! So back to the waiting room we go with still no food because now I couldn't eat anything again for the new scan. There was also another huge problem.. where in the heck were they going to put this new IV line, hand and wrist still a big no, I had to take blood that morning through my arm and had the first IV in another vein in the arm. So they decided to call in the head chemo nurse to do the IV instead of one of the scan nurses. Ok Im thinking well she my best option lets do this, of course she could not get the IV in and after MANY tries she ended up putting a smaller butterfly or something line in, now off for the scan I go. But when I get there the technician tells me that there is no way that they can get the dye into that IV and I need a bigger one.. umm what.. they just got the best nurse to put this in and there is ABSOLUTELY no veins left! After him yelling a bunch they decide that they are going to hand pump the dye in, I still don't even know what that meant, I was so out of it and drained at this point.. I go in for the MRI and it was looongest scan I have ever had, it look almost two hours. And if any of you know about MRI's they are terrible because of the pounding noises and the constant.. deep breathe.. hold it..breath..crap you have to do over and over and over. I really thought I was going to pass out laying down. Finally the scan is over and NOW, duh why didn't I think of this, we have to wait for the results before they would let me leave. It's about 8:00pm at this point and pretty much EVERYONE at Sloan is gone, just me, mom my and my amazing team of Dr.'s. Picture me and mom just sitting with these Dr.'s eating crackers just waiting and waiting. FINALLY at around 10:00pm the scan comes back... yet this time is shows I have two blood clots one in both sides of my groin. Ok pretty much IMPOSSIBLE.. So Dr. Wonder says I can go and he will have to scan re-read tomorrow just to give me the definite ok, but he is about 99percent sure I am fine. And tired as tired could be but HAPPY as ANYTHING that there was NO SIGN OF MELANOMA, mom and I get on the subway and head HOME!!

Never a dull moment in my journey.. love you all!!   

Sunday, January 8, 2012

Winter Makes Me Happy!

     Well since my sun loving days are over, not that I even loved being in the sun that much because I usually "over heat" very quickly, I am glad for Winter!! In the winter I just feel a little more normal.. In the winter I don't have to worry about being outside for too long, or finding an outfit that covers my scars, or passing up going to the beach with my friends. Because as if us Melanoma patients don't have enough to worry about, we worry about the SUN! And yes sometimes we may "over" worry, I know I do, but isn't that normal to form a strong dislike of the very thing that caused our suffering!
Month 4
After my first treatment I didn't have that many side effects besides fatigue and itchy skin. I think the hardest thing about this month was learning to deal with the sun..Since this was my first summer with Melanoma and with the knowledge of the true dangers of UV rays, I was truly AFRAID of the sun. I pretty much didn't leave the house without globs of sunscreen and I would only stay outside for very short periods of time. I didn't want to go to the beach or the park or anywhere sunny. And the one time I did attempt to go to the beach, I felt very out of place. Not only was I, by far, the palest girl there, I was also the one wearing 100spf sunscreen, a coverup, a hat, and under a huge umbrella. It was such an uncomfortable experience that never went back! And this made me not only sad but mad too, why was I letting the sun ruin my summer.. a summer that I was feeling, mostly, healthy enough to enjoy. My doctors would even tell me that I can't live my life fearing the sun, that actually some "safe" sun exposure is good for you. But I just couldn't get passed it; maybe next summer will be different. I hope that it is because I don't want to spend my healthy time afraid of ANYTHING. I want to live my life to the fullest and do and experience the most I can..just as everyone should.. because frankly in life you just never know! After my last blog a good friend of the family send me a very inspirational message, she said,"Don't look back, don't look down--always look ahead to your continued journey in life, and keep on going."
And I will try my very best to do just that!! Yes there will be days that I will be sad, depressed, and asking why is this happening to me, but that's ok too because I have learned that life is made out of little moments and as long as you allow yourself to truly be happy in these tiny precious moments you are allowing yourself to LIVE!!

My second treatment was very similar to my first one, a lot of blood sucking, uncooperative veins, IV lines, and prayers of getting the good stuff! And an awesome and unconditionally loving mom right by my side, holding my hand through every step of the way : ) Side effects were also the same, mainly fatigue. 

Next month is full of a little more craziness at Sloan, some good news, and a very great adventure!!

Tuesday, January 3, 2012

Like it or not I am in for the long haul!

I know through this blog I am going back in my journey with Melanoma, and I will continue, but I just wanted to say a very sad farewell to one of my fellow melanoma warriors, Randi, who passed away December 29th. She like myself was diagnosed with stage III melanoma and was healthy for 5 years when in April of 2011 the melanoma appeared suddenly in her brain and then spread quickly to other areas. She left behind an amazing family so please keep them in your prayers! AND please as in the words of my great friend Chelsea,

"As you head out to celebrate the end of 2011 (good riddance) and the beginning of 2012, consider adding "Protect My Skin" to your resolution list. You may think you look prettier with a tan, but I am sure you would agree that you look prettier alive than dead. You may think that mole is nothing to worry about but it may be the same type of mole that began my stay in Hotel Melanoma. Consider it."
(I couldn't have said it better.. if only someone I knew told me these words 9 months ago)

Remember I am using this blog to get my story out there and in that hopefully help others but I am also using it to hopefully help myself cope with the craziness that is now my life, and stories like Randi's sometimes make it a lot tougher in the coping department...It's a hard fact to swallow that there is no cure or even a proven treatment for Melanoma and I will be living the rest of my life in constant fear of my cancer returning in places that simply won't allow me to fight the good fight! BUT I promise you all that even though as I say, "Im in for the long haul," I am going to try my darnedest to never give up hope and until it is my time I will continue to try to spread awareness to many others!! 

SO that being said I continue my story...After my first visit with Dr. Wonder, he sent me for more scans. I first had an MRI of my brain and then a CT scan of my chest, abdomen, and pelvis. Even though I just had a PET scan, not even two months prior, they needed to double check everything before I was officially approved for treatment. And as we also know Melanoma can spread at ANYtime. 
First Day of Treatment June 24th 2011:
I arrived at Sloan around 8am and was soon called into the lab for vitals and blood test, yes I know they had told me that I needed to give a lot of blood for the trial but I don't think anyone told my veins or body just how to handle that. Now remember because I had a full lymph node dissection in my left under arm I can never have blood drawn from that arm, so I only have one arm to work with and lucky me the veins in that arm are pretty much umm non-existent. After being stuck multiple times and almost fainting just as many, the bloodsuckers(which I like to refer to them as), had to stop at 9 vials all while secretly cursing and hoping to never get me in their chair AGAIN! Then right from the lab AK(dr assistant) came to take me into the Dr.'s office for a physical exam and to discuss my scan results. This was thankfully a pleasant appt., my scan results were clear, physical looked good, and I got to be reassured again that I was in good hands. Now that I was official approved to receive the treatment I needed to wait around 2-3 hours while the drugs or salt water was being mixed and sent over to the chemo suite. During the wait my mom and I would discover our favorite spot at Sloan.. THE GIFT SHOP!! And of course we found some place to stuff ourselves so I could get some energy from having all that blood drawn. Next we are called into the dreaded chemo suite... a "suite" not so much! We are brought into this small curtained off room with, I guess, a decently comfy chair. A nurse comes in to take more vitals and then another nurse comes in to insert the IV line, which of course having used up all my semi-good veins for the bloodsucking, I had nothing really left. Finally after much sweat and tears(by the nurse) She was able to find a vein in my wrist..ugh! Then for the next two hours you sort of just sit there and hope and pray that the clear fluid flowing through your veins is not salt water! After the two hours you need to sit and wait in the room for another hour to make sure your vitals stay normal and you don't have any immediate reactions. And finally you are sent on your way home to possibly deal with some not so fun side effects!

Thanks again for reading and keeping me and sadly too many others in your prayers!!  

Next post some side effects and dealing with my first summer "AFAID" of the sun!