So here we are...the holidays are upon us and it's absolutely freezing out. I just want to thank everyone for their support lately because it has been very overwhelming to know that my journey has in some way affected them. It's pretty crazy. I never set out to accomplish anything great at the beginning of all of this, my only goal was to just share my story and keep people updated with how I was doing. I guess that's just how I am. The New Haven Register hit the nail right on the head...I enjoy putting others before me. I understand that my situation is very serious and I need to focus on getting better, but I can't help but think of everyone else throughout all of this. When I think of the day I was diagnosed, while I remember every detail of that day, the thing that stands out the most was that I didn't dwell on what had just occurred in the doctor's office, I looked ahead to the next steps. I worried about how to tell my friends and other family members, I honestly felt like I was ruining everyone's day by telling them. I begged my father to go back to New Jersey so my mother didn't have to be alone. When it comes down to it, I'll take care of myself when the situation calls for it, but I want everyone else to be ok as well. It sounds silly, but it's just my nature.
My last treatment sucked. I didn't eat for about three days and I left my bed probably twice. It's strange because sometimes it hits me hard and sometimes I'm feeling pretty well. Just need to roll with the punches I guess. I have a scanned scheduled for the first week of January, but all the indicators are pointing towards a new treatment. Based on some levels in my blood, the doctor believes these current drugs have run their course and are starting to become ineffective. While that sounds terrible, it's actually not as bad as it seems. My doctor expected this to happen much sooner, and we have gotten more than we could have hoped for out of this form of treatment. The new stuff will be about an hour long infusion and I won't have to wear the pump for two days following, which is good news because I couldn't sleep on my stomach with that thing hooked up. Bad news is it sounds like the side effects are going to be pretty rough. Even more nausea, fatigue, and probably hair loss. I mean my hair is falling out either way (for those of you who know my dad you'd understand), but I'm pretty nervous because I don't want it all to fall out. I have a decently shaped head and could always shave it, but I don't want to lose everything...truth be told it's very satisfying when people tell me I look like a normal kid with nothing wrong with me. But that's just me being selfish...hair is hair...I'm still the same person no matter what and I'm still here to complain about it. So we'll see what happens. I'm very excited for the bowling event that is coming up on the 8th...we have over 70 people signed up and it will be a great time. Well this is all for tonight, I'm driving down to Charlotte tomorrow and can't wait to see all of my friends there. It's hard to imagine that it's been almost two years since I've left, but we all still keep in touch and I cannot thank them enough for being there for me. That's all for this week...have a safe and happy new year and I'll probably post something twice next week because I really want to talk about some of the music that has influenced me throughout this whole thing as well as my scan results.
Monday, December 27, 2010
Monday, December 20, 2010
12/21/2010
Anne, the girl who I met at the hospital provided me with so much hope and inspiration. She was the youngest one there before I arrived and showed me that being happy is contagious. Unfortunately, she passed away earlier this fall and I am forever grateful for the lessons she taught me in the all too short of time we shared...so, Anne, this is for you...
Anne what’s it like? How do we look from so far up above? They always told me not to be scared and that it wouldn’t happen, but now I can’t help and wonder if I’ll be seeing you sooner than I’d like. Don’t get me wrong I wish I could see you right now, offering that reassuring smile and Brooklyn accent to make me get out of my head for a while. God I wish I knew how it ends.
This is something I’ve written as a tribute to the girl who taught me that cancer is something you must make the best of. Annie, I know that I’ll see you again someday and I’ll just be that lost kid who lives in Jersey, but I know that you would be proud…So here it goes, something that gives everyone a little insight into what we have to face…
And Annie does it hurt? I must admit that while I write this I can’t but help and think about the Jack’s Mannequin song “Annie use your telescope”…And every time it never fails, it bring a tear to my eye…
And Annie how do I pretend to be so confident, when I know that I’ve got the world betting against my success. I try to sit here and act like nothing is wrong while I try to provide an example for my brother and best friend. But I know that you’re here telling me not to doubt myself because I have what it takes. But I don’t know…how do I know? There’s got to be a purpose..there’s got to be a meaning…yet why do I cry? Why do I cry? Why can’t I drive to school and hear “Dakota” and hear those lyrics that my brother cried when I was given such a terrible future..and I can just cry. Still to this day I can just cry. What should I do? I don’t know what to do. Sometimes I just want to break down and cry. I know people are watching, but I don’t always know what to do. I just endure as much as I can and accept that I not only do it for myself. I can’t imagine what it would be like to be my friend, my sibling, my aunt, uncle, father, or mother…knowing that you are powerless..knowing that the burden rests upon my shoulders. Knowing that my best friend cannot help me with this burden….what shall I do? I just don’t know. The hardest thing I’ve ever had to admit is that I don’t know. I’ve always known. What do I do? I don’t have the answers…I offer no solutions..I simply endure and hope that tomorrow will be brighter and offer more hope than today. I simply AM…and I just hope that this is good enough. Annie I hope that I make you proud…because I miss you and I sure could use your attitude while others look towards me for hope. Please help me, because I’m not quite sure I can do it on my own. Annie this might sound strange, but I love you.
Monday, December 6, 2010
12/6/2010
Alrighty it's been way too long since I updated this...
When I left off I was pretty nervous about getting the scan results because it seemed like there wasn't really any action going on in this ordeal lately so I figured some bad news was on the horizon. Turns out I was sort of right, but also sort of wrong. The scan results were very vague and the interpretation by the radiologist didn't specify whether things were getting better or worse, she simply said that things in my liver "looked different"......Looked different? What the hell does that mean? This isn't exactly looking at a piece of art and any interpretation you come up with is alright. This is my life we're talking about here. So that wasn't exactly the answer I was looking for, but one thing was for certain, nothing had definitively improved. My doctor seems worried that my current treatment has gone as far as it can and the disease is starting to adapt to it and will eventually be immune to the drugs. That's the bad news. The good news is that there are other treatment options that she has been saving for a rainy day and are supposedly pretty effective. I haven't been put on the new stuff yet, but I'm pretty certain that move will be coming fairly soon...hopefully after exams so I don't have to worry about feeling terrible while taking them. The new ones are called irinotekan and avastin. The side effects don't sound too terrible I guess, but the thinning of the hair may result in having to shave my head again (luckily it appears I was only dropped once or twice as a child since I only have a few dents in my head). Oh well, it's just hair, I was going to lose it eventually (for those of you who have met my dad you will understand)....so it's not the end of the world. Eventually I'll be able to just take a pill and it will grow back just as I hope there will be a pill I can take to make me better.
I also started having some headaches shortly after Thanksgiving and had migraine headaches for two days in a row which I haven't had since I was about 13. I decided to let the doctors know because they always yell at me when I try to be a hero and not call them when something from the long list they gave me is acting up. I can't help it, I'm stubborn and don't really consider things to be noteworthy unless I'm really feeling terrible. So just as a precaution they scanned my head and it turns out that little hamster running on his wheel up there is still doing his job. So that was definitely a relief. Here I am just doing the same old routine and doing the treatment every other week until the doctor decides to change things up.
One other thing though that has been bothering me...
That whole "change your facebook profile picture to a cartoon to support children who are abused"...apparently it turns out the whole thing was a scam created by pedophiles because it would entice children to accept their friend requests due to the inviting nature of the cartoon picture. The whole thing is sick, but the thing that really upset me about everything was that people felt better about themselves for "doing their part." What did they do? Did they volunteer at an after school program for kids who didn't want to go home to abusive parents? Did they donate any sort of time or effort to organizations dedicated to actually helping those innocent kids who can't speak out against abuse? NO. No one did that. They simply copy and pasted a picture to their facebook account and hopefully it helped them sleep better at night for "doing their part". I'm not saying everyone needs to go out and try to save the world. We all have our own battles and sometimes do not have the means to help others. All I'm trying to say is if you do have a cause that you believe in, fight for it. Make a difference through your actions. There are wonderful organizations out there that share the same beliefs as you...the most selfless and genuine act someone can perform is to become a volunteer who expects nothing in return, but is not afraid to donate whatever they can, whether it be time, money, or enthusiasm, to truly make a difference.
When I left off I was pretty nervous about getting the scan results because it seemed like there wasn't really any action going on in this ordeal lately so I figured some bad news was on the horizon. Turns out I was sort of right, but also sort of wrong. The scan results were very vague and the interpretation by the radiologist didn't specify whether things were getting better or worse, she simply said that things in my liver "looked different"......Looked different? What the hell does that mean? This isn't exactly looking at a piece of art and any interpretation you come up with is alright. This is my life we're talking about here. So that wasn't exactly the answer I was looking for, but one thing was for certain, nothing had definitively improved. My doctor seems worried that my current treatment has gone as far as it can and the disease is starting to adapt to it and will eventually be immune to the drugs. That's the bad news. The good news is that there are other treatment options that she has been saving for a rainy day and are supposedly pretty effective. I haven't been put on the new stuff yet, but I'm pretty certain that move will be coming fairly soon...hopefully after exams so I don't have to worry about feeling terrible while taking them. The new ones are called irinotekan and avastin. The side effects don't sound too terrible I guess, but the thinning of the hair may result in having to shave my head again (luckily it appears I was only dropped once or twice as a child since I only have a few dents in my head). Oh well, it's just hair, I was going to lose it eventually (for those of you who have met my dad you will understand)....so it's not the end of the world. Eventually I'll be able to just take a pill and it will grow back just as I hope there will be a pill I can take to make me better.
I also started having some headaches shortly after Thanksgiving and had migraine headaches for two days in a row which I haven't had since I was about 13. I decided to let the doctors know because they always yell at me when I try to be a hero and not call them when something from the long list they gave me is acting up. I can't help it, I'm stubborn and don't really consider things to be noteworthy unless I'm really feeling terrible. So just as a precaution they scanned my head and it turns out that little hamster running on his wheel up there is still doing his job. So that was definitely a relief. Here I am just doing the same old routine and doing the treatment every other week until the doctor decides to change things up.
One other thing though that has been bothering me...
That whole "change your facebook profile picture to a cartoon to support children who are abused"...apparently it turns out the whole thing was a scam created by pedophiles because it would entice children to accept their friend requests due to the inviting nature of the cartoon picture. The whole thing is sick, but the thing that really upset me about everything was that people felt better about themselves for "doing their part." What did they do? Did they volunteer at an after school program for kids who didn't want to go home to abusive parents? Did they donate any sort of time or effort to organizations dedicated to actually helping those innocent kids who can't speak out against abuse? NO. No one did that. They simply copy and pasted a picture to their facebook account and hopefully it helped them sleep better at night for "doing their part". I'm not saying everyone needs to go out and try to save the world. We all have our own battles and sometimes do not have the means to help others. All I'm trying to say is if you do have a cause that you believe in, fight for it. Make a difference through your actions. There are wonderful organizations out there that share the same beliefs as you...the most selfless and genuine act someone can perform is to become a volunteer who expects nothing in return, but is not afraid to donate whatever they can, whether it be time, money, or enthusiasm, to truly make a difference.
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