Sunday, February 26, 2012

I'm at the right place!

As you all know Melanoma has brought upon may tears for myself and my near and dear, but luckily this time they were tears of joy! I continue, as my new mole mate friend puts it, to be a Cancer Veteran.

"Cancer is part of me now. It’s part of all of us who’ve experienced it, whether we call ourselves survivors or continue to grope, as I do, for a word that makes sense of this new place. How can I call myself a “survivor” when I will spend the rest of my life monitored and tested, a veteran who knows all too well that another deployment could be as close as the next CT scan? We cancer vets live daily with our cancer — in the scars on our bodies, the memories of the people who were kind when we needed help, and the way that we can never again take for granted what a gift it is to make plans." ~Mary Elizabeth Williams  

Last Thursday I started my day like all the rest, waking up early, going to work and missing my bed oh so dearly. But in the forefront of my mind, as much as I tried to block it out, I knew.. today is Scan Day! It's the day that may change my life...
Now usually I get my scans done in the morning but with my myriad of doctor appointments, unforeseen hospital visits, yes the occasional days that I feel to sick to get out of bed I didn't want to miss yet another day of work. 
So after work I picked up Joe, went to my mom's, and got our usually taxi driver(AKA my dad) to drop us at the nearby subway station. After a short train ride we arrived at, what feels like my second home, Memorial Sloan Kettering! After a short wait I was giving my chilled "cocktail," which seemed to just not want to go down..ugh! Then I was called in get changed into my lovely gown and get my IV put in. Well we all know how my veins feel about this part of the day, they go running for their lives... Even after all the usual methods of hot water packs, brutal tapping and searching those puppies just didn't want to show their face. So the nurse suggested we wait a bit and a least get me into the scan room to lie down. I truly do feel bad for the nurses that get me sometimes; what seemed like almost an hour later still no luck. Finally, he tried this small tiny vein and bingo we got blood flow hurray! Since it was so small he needed to hand pump in the dye but it worked : ) After the scans I was of course starving as usually so we went and got something to eat and then headed home. I probably got home around 7:45pm and to my surprise 5mins later I get a call from Sloan. My first reaction was did I leave something there? Why are they calling so late. But as soon as I answered I heard the most amazing sound.. The happy and cheerful voice of Dr. Wonder!! He got the results sent to his office and thought I might want to hear the great news before I went to bed worrying. SCANS ARE CLEAR! I literally wanted to jump through the phone and kiss him.. He gets it. He gets what its like to be on the other side of things and this is why I truly love my team! 

Then this past Thursday I was back to my home away from home with momma in tow for my 6th Ipi/placebo treatment. I was sad to see that my favorite assistant, AK, was transferred to a different Dr. but everything after that went very smoothly. I was able to get and IV placed right away with no problems, vein in hand was working great, 12 vials without even breaking a sweat(yes I do mean from the nurse)! Then I was sent in to meet with my team. But this time I was the one about to ask all the hard questions. They started off of course by congratulating me on my scans and asking about Joe and my wedding plans, about my birthday and snowboarding. Went it got to asking about how I was feeling a got out my list of questions.. Starting with simple, was this or that normal, showing them by rashes, talking about my last urgent care visit and then I got to my last question...

The question that had been on my mind from day 1 but I think now I was finally ready to ask it. I needed to know more about statistics, I needed to know about life expectancy, in the long run, and not just 5 years, I needed to know if it was even a possibility that I would have a chance to grow old, and probably the most painstaking for me, I needed to know are children realistically part of my future. 
Because lately, and I'm not sure if this is just a coping mechanism that I adopted but I have come to terms with some of these issues. I have almost in a way accepted the fact that my life is not going to be a long one, and the dreams I have always had for my future are not a reality anymore. And I was, as difficult as it is to even type these words, Ok with it.. 

However, my Doctors were NOT. They told me yes no one knows your future but there is no reason for us to think at this stage that you will not and I quote, "get away with not having to deal with the joy of wrinkles!" They would not whip out a statistics chart because they simply don't believe in them. Instead they gave me a pep talk!!! Haa "a pep talk" that was not the answer that I wanted... but wow it sure as heck was the answer that I NEEDED!!  In terms of child birth they feel it is still an option, and one they would like to revisit after my treatment(in 2 years). Adding in today's day and age there are so many possibilities in that area. And if that wasn't enough they introduced me to a fellow mole mate in stage IV, who is at the moment on a clinical trial that has her cancer free!! She was honestly such a breathe of fresh air and an extremely inspiring person. Finally I was off the chemo suite to get my injection, which also went extremely smoothly. 

I left there with a new perspective.. you just never know what great things are to come.. And hope is always an option!

As my mom has written.. 
"I just can't say enough about her Dr. and his team. We are bonded as a family and we have so much trust in them.  They really show how much they care. They cry with us, they laugh with us, they give us a hug when we need it, and always share their heart. Their personal treatment and their professionalism makes our tough journey so much easier." 

So true mom.. so true!! 

I have been exhausted these past few days since my treatment but even though my bed as become my new best friend, I just hear the simple words of my fellow warrior friends saying.. ITS WORKING!! Love u all : )

Monday, February 13, 2012

Birthday Blues.. NOPE NOT THIS YEAR!!!

Sorry I havent written in a few weeks; I was sort of taking a little break from "Melanoma world." But since it is scan week for me I have no choice but to be pulled back in. On Thursday I will receive my 5th organ CT scan and I am trying very hard not to freak out..

AND then I remind myself it's ok to freak out because, well because I have Cancer and I think that anyone in my situation is allowed to freak out on the week you are going to find out if this awful thing has spread to your vital organs!! So this week I am giving myself the "Official Cancer Card" pass. 
YES!! It's an actual card.. LOL!! (thanks Nick)

This week I am officially allowing myself to do whatever I want to do, say whatever comes to my mind, and EAT whatever the heck I want!! Sorry in advance for anything I may or may not do ; )-

Ok now on to the FUN stuff I have been doing while on a brief hiatus from the Big C. First my birthday was probably one of the BEST birthdays I've had so far. It started off with dinner with my dad and Joe at Connolly's on Thursday. Then Friday straight from a half day at work I went up to the Pocono's with my snowboarding/skiing buddies. And despite the fact that I had been feeling nauseous all day, me Joe, Joey and Josh were able to go night skiing(my favorite time to go) at Big Boulder. Ok yeah they might of had to deal with me throwing up a few times, thanks guys!! But even though I felt pretty sick it was an amazing time. I honestly haven't felt this great mentally since being diagnosed. 

I have to admit I was a little nervous about going snowboarding, since I haven't really done anything this physical since my surgeries but I am so glad I went. For me, being on a snowboard gives me this sort of indescribable freeing feeling. When I was snowboarding I wasn't that poor sad girl with cancer, I was a cool carefree boarder chick..hehe but its true, I was doing something that I love to do and I was doing it with a confidence that I have sadly been lacking for awhile. 

The next day Saturday I was feeling much better and me, the J boys, and Tara went to, Camelback, another nearby ski resort. It was such a wonderful day!! I did end up falling right on my lymph node dissected arm, while trying to land a jump, oops sorry mom. I promised I would try to be careful but I was in the groove.. well so I thought.. lol And even though it hurt like hell and I was afraid it was going to start swelling any second, I was FINE!! Afterwards we came back to the house we were renting, and had a wonderful home cooked meal thanks to chef Amy : ) Delicious!! Then we all went out to our favorite townie bar SHENANIGANS! When we came home everyone surprised me with a 'Giants' themed Bday cake : )

On Sunday we drove home early to rest up for Meghan's big super bowl party!! I was so friggin nervous watching this game... I mean this whole season alone has given me enough grey hairs but this game was intense. AMAZINGLY they pulled off another huge Superbowl win and happy couldn't even describe how I was feeling!! I actually cried yup I cried.. hey I deserve some happy tears once in awhile.. 
Now whats funny is my older sister is going to read this post and say how can someone care this much about a stupid football game but my younger sister is going to say yeah I know, I almost cried too : ) Jess this is why your my mini me.. and Jill I don't know how we are related.. jk Love u both!!

Well the next day was finally my actually birthday and by then I was just simply pooped! But I some how made it into work probably still on a GIANTS high! The kids all made me cards and were so excited that it was my birthday, but they wanted to know where my cupcakes were?? (Usually every year my mom would make me cupcakes to bring to share with the class ..yes I AM FIVE.. and yes your just But this year she was in Florida helping my sister) Well I tried to explain to them that I didn't have any time with my long weekend and the Superbowl when I hear a knock on my classroom door.. And standing there was my wonderful Joe with balloons and cupcakes for the whole class!! Thanks MOM : ) She called Joe and had it all planned out. Have I told you yet that I have the best mom and finance ever. The kids were thrilled and ok so was I!

Later that day I could barely move so me and Joe just ordered chinese food and watched a movie... 

BEST BIRTHDAY EVER!! Thank you to all my friends and family for making it so special.

And thanks for reading.. I will update again after my scans! Please if you could remember on Thursday to maybe keep me in your thoughts and prayers.. LOVE U ALL!!

Thursday, February 2, 2012

Blast from the Past

Ok so this is going to be my last "blast from the past," blog post. I am going to keep posting and spreading my message but in present time : )

Month 8 thru 10 - November, December, January

In the middle of November I had my second scan since being in, I guess you can say 'remission', though us in the Melanoma world refer to it as NED(no evidence of disease), because with Melanoma you are never really rid of it. When you are NED it's just not showing its ugly head little at the moment...BUT we will take it, and cherish it, and be utterly thankful to hear these lovely words for as long as we can! 
So as you can imagine the time right before scans can be very stressful and down right scary, your mind is just consumed with thoughts of what if the Dr. doesn't say those lovely words. And since I will unfortunately have to go through this torture every few months until well... ALWAYS I am hoping with time it gets easier, but right now I just can't see that happening. Knowing that it can come back at anytime whether it is a few months from now or a few years from now just doesn't put me at much ease. 

This time, unlike my last scans, I didn't receive my results that same day, which actually made me a lot less nervous. Dealing with the craziness of getting the actual scans AND hearing the results all at once is just too much. The day went pretty smoothly, well besides almost passing out when the nurse put in the IV line for the dye contrast and getting yelled at for not telling her before hand that I get queasy with needles.. umm I do NOT get queasy with needles.. someone with cancer learns very quickly there is no room for queasiness or a low tolerance for pain. So I was a little bit offended by her reaction, usually the nurses at Sloan are a lot more understanding. I mean did she ever consider that maybe I almost fainted because I haven't been able to eat for the last few hours, or that I had to drink a "cocktail" mixture of who knows what, OR that I am nervous out of my friggin mind!! So after some ice packs behind my head and putting my feet up for a while I was able to get on with the scan.

AND then the following day I got the call that everyone wants to hear, "My scans continue to show no sign of Melanoma!" WHOOHOO My family and I were so thankful to get this news, especially knowing that we would be able to truly celebrate the upcoming holidays : )
Two weeks later I was scheduled for my 4th treatment injection, which has been a long time coming since I wasn't able to get my last one in Sept. But of course since nothing seems to go according to plan with me, the Monday before my treatment my earlobe started to hurt. Not really thinking anything of it I went to work the next day. Throughout the day it started to feel more and more irritated but it was such a busy morning I didn't even have time to check it out, so when I went down to the teacher's lounge for lunch I couldn't understand why everyone was starring at me and telling me they think I should go home or to see a Dr. ASAP. I literally looked like DUMBO!! I immediately went home and went to my general Dr. who said I had a bad infection probably from an earring or something, gave me antibiotics, and said I should be better by Thursday for my treatment. However, it got even worse and the next day I was sent home from work again. Since I was so eager to get my 4th treatment I didn't tell my Oncologist and showed up for my treatment like it wasn't a "big" deal, no pun intended.. but literally it had gotten so bad that the glands in my neck and shoulder were swollen and the infection started spreading from my ear to my neck. Dr. Wonder took one look at me and said not only would I not be able to again receive treatment but I needed to be admitted into the hospital ASAP for IV antibiotics!! I ended up having to stay there for three days : ( NOT fun.. though they did have bingo and some pretty cool arts and! Luckily, it started clearing up and after ten more days of oral antibiotics I was finally able to get my treatment on Dec. 15th. Yipee..

Thankfully with all that drama over with, my Christmas and New Years Eve ended up being amazing, and besides some very itchy skin, extreme exhaustion, and a small but painful trip to Sloan's urgent care due to a virus or side effects I have been doing pretty good! So on that note I just want to say THANK YOU to everyone for following my story of my last crazy 9 months!! It has been a very tough journey but writing this blog about what I have been through has been extremely therapeutic in helping me cope with my new life. Please keep read, sharing, and spreading awareness. 
This weekend I am heading to the slopes to go snowboarding or with this weather "slushboarding" to celebrate my birthday weekend and then coming home to root, root, root for the home team GO GIANTS : ) 
Thank you God for allowing me to enjoy another birthday, life is a gift remember to cherish each day... Especially BIRTHDAYS!!