Andrew McMahon, of Jack's Mannequin, was diagnosed with Leukemia in 2005 and eventually made a full recovery thanks to a stem cell transplant he received from his sister. While in the hospital for several months, he recorded a documentary entitled "Dear Jack". The documentary is extremely powerful and i recommend it for all to see. After his illness, Jack's Mannequin released the album "The Glass Passenger" and many of the songs featured capture the emotions and struggles he faced during his battle with Leukemia. This album was first introduced to me by my brother and I am extremely thankful he brought it to my attention. While the entire album is great music in general, the lyrics have gotten me through some very difficult days, especially at the beginning of things when I really didn't have a grasp on the new direction my life was taking. The song that I quickly identified with when things first started off was one called "Spinning"...here is a small part of the chorus:
I keep forgetting when the earth turned slowly
So I just waited til the lights come on again
I lost my place but I can't stop this story
I've found my way, but until then
I'm only spinning
This described my life perfectly at the time. Everything was going so fast around me and I could hardly keep up with all of it. Actually, I wasn't even keeping up at all. Everything was moving and life was continuing faster than I'd ever seen, but I was not moving at all. I wasn't in school, I couldn't work, my only job was to focus on getting better. Everyday was the same, I spent the days alone in my new home in Jersey where I didn't know anyone. I did a lot of thinking those days and had no idea what life held in store for me. It was a scary time and I could have easily given up and lost sight of my reasons to continue on and accept whatever challenges my battle would present. I almost did lose it...but that's not who I am. Things go wrong and sometimes it seems like you're up against the world on your own. It's standing against that last domino in the line not knowing if you have the strength to keep it standing when the weight of the others come crashing...it may seem like there is nothing you can do, but just hold on because you're stronger than you think. At the end of the day, it was very simple...I was sick and with the help of a little faith and the love of those around me, I'd regain my footing and catch up with the world.
Wednesday, January 19, 2011
1/19/11
Well this can't be right...I feel fine...hmmm...this is me being utterly confused/surprised. Here I was getting myself all psyched out for the new treatment and expecting the worst, and I feel absolutely normal. I sat there in the waiting room at the hospital all nervous because I had no idea what to expect or how bad the side effects would hit me from this new treatment. Turns out I had some extra support there with me that day, one of my best friends growing up, Lou, was in the city for work and hung around the hospital with us which was exactly the lift I needed that day. I would be lying if I said I wasn't extremely nervous going into the day because I know how badly the other treatments affected me. They called me back into the treatment suite where I sat in the recliner and awaited whatever would come next. Of course things didn't go smoothly...why should they? When the drugs arrived, one of the IV bags was leaking so they had to be sent back down to the pharmacy and I'd have to wait until a new batch was ready. After about an hour, the drugs were back and it was time to begin. The first step was the same as it has been for the last two years almost...the nurse had to access the port in my chest. This step is accomplished with an inch long needle and the nurse yelling at me to "take a deep breath!!" as it pierced my skin. I give Lou credit, because it's not an easy thing to watch especially if you are weary of needles. This step, has unfortunately become like nothing for me and I simply take my deep breath and endure the pinch as the needle finds its way into the port. The first drug they administered was called Avastin and was only a ten minute infusion. That portion went off without any problems. The next would be a half hour infusion of Irinotecan which had the potential for more side effects than the Avastin. I braced myself for whatever was next and simply told myself "Well, this will probably suck." I've become very insightful throughout all of this I swear. They gave me a mega-dose of steroids...triple what I had taken a few times during my early treatments. I guess I need to start working out this semester so I can at least put them to good use. So the infusion started and I felt absolutely fine for the first five minutes. About ten minutes in, I was reading an article on my blackberry when I suddenly noticed I could barely focus on the screen. I looked up and the feeling hit me...I was incredibly drunk! Well, not drunk I guess, but I was definitely out of it. I couldn't focus and my center of balance was off, my vision was all over the place, and judging by my dad's reaction, I had a pretty stupid look on my face. I informed the nurse I was feeling "funky" and she said that it was normal. My eyes were also watering at an incredible rate and it looked as if I was sitting there crying my eyes out (this was a normal side effect). So I sat there in my altered state for the remaining twenty minutes and when it was time for the IV to be taken out, I told the nurse that I wasn't feeling too hot and probably wouldn't make it too far if I tried to get up and leave. At that point she decided to give me the backup plan...Atropine (yeah it's the same name of the stuff in the movie The Rock that they tell Nicholas Cage to inject into his heart if he comes in contact with the VX-Poison Gas). Luckily, I had not been exposed to VX Gas at this point and did not have to stab myself in the heart with a giant syringe. The atropine was administered and within a minute I began to feel exponentially better than I did. Finally, I was ready to leave and was able to walk out to the parking garage under my own power. It did feel like I had just gotten the crap beat out of me and I slowly walked out of the hospital, but relatively speaking, I really didn't feel too bad. The next day I fully expected to wake up and feel like death...this was not the case. I woke up and felt great! Of course, I had some trouble sleeping because the steroids make you feel a bit wired, but if insomnia is my harshest side effect, I will take that 100 times out of 100. Since the treatment, I've been feeling great and really have nothing to complain about. Who knows if things will get worse because I'm sure these drugs take time to build up in my system and then side effects might come along, but until then I'm just thankful I feel great and pray that this stuff works. It's a bit scary that I don't feel terrible because I'm not sure if that means these drugs won't affect me...it's going to sound ridiculous but I'd almost rather feel like crap as long as that means the treatment is working. For now I guess it's just a leap of faith. Just have to take it one day at a time, one treatment at a time, and eventually we'll get this thing figured out.
Over the weekend I had the privilege of being invited to the American Cancer Society's Hope Lodge in Manhattan to attend their all-star reception. The reception was set up to honor those who had raised a significant amount of money for their respective Relay for Life. I was invited to briefly speak and share my experiences with those present. What I said and the message I am trying to spread is not why I went...I wanted to thank the volunteers and employees of the American Cancer Society for all they do in support of those fighting for their lives. The Hope Lodge was an amazing place that provided a place to live for people who are receiving treatment in the City which required them to be there for a few days. Everyone knows a hotel room in the city is extremely expensive, and not everyone is able to drive in everyday to receive the treatment they need. This establishment is meant to take the burden off of these people. Believe me, when you are sick, the world seems like it is going a million mile per hour between setting up appointments, travel arrangements, and on top of it all feeling like crap. Having one less thing to worry about can mean the world to patients. It's nice knowing that you have a large organization on your side and they can lend you a helping hand. Why do I support the American Cancer Society when I own my own non-profit organization that also raises money for an eventual cure for cancer? It's simple, the American Cancer Society is a huge organization that offers more than just money to fund new treatments and research, they provide resources and services that help a great deal of people. While RELENTLESS Against Cancer will continue to do its part, we cannot offer these services to people because we do not have the resources. We are doing our part to donate to institutions that are doing research and working on new treatments because the research is not cheap. On top of that I want to spread a message...it's no secret that I do not identify myself with Lance Armstrong and his "Livestrong" message, and I do not support organizations who have lost their way and spend over $1million per year of donor money to sue small companies (such as mine) for using the phrase "For the Cure" in any of their fundraisers (you know which one I'm talking about). Our message is simple...the fight against cancer is something that must be renewed each and every day. Every day you wake up is a chance to make a difference. While the ultimate goal cannot be accomplished in one day, everyday we are closer to making it a reality. Our efforts must be tireless, an overwhelming opponent can only be defeated by RELENTLESS work and refusal to accept failure.
Over the weekend I had the privilege of being invited to the American Cancer Society's Hope Lodge in Manhattan to attend their all-star reception. The reception was set up to honor those who had raised a significant amount of money for their respective Relay for Life. I was invited to briefly speak and share my experiences with those present. What I said and the message I am trying to spread is not why I went...I wanted to thank the volunteers and employees of the American Cancer Society for all they do in support of those fighting for their lives. The Hope Lodge was an amazing place that provided a place to live for people who are receiving treatment in the City which required them to be there for a few days. Everyone knows a hotel room in the city is extremely expensive, and not everyone is able to drive in everyday to receive the treatment they need. This establishment is meant to take the burden off of these people. Believe me, when you are sick, the world seems like it is going a million mile per hour between setting up appointments, travel arrangements, and on top of it all feeling like crap. Having one less thing to worry about can mean the world to patients. It's nice knowing that you have a large organization on your side and they can lend you a helping hand. Why do I support the American Cancer Society when I own my own non-profit organization that also raises money for an eventual cure for cancer? It's simple, the American Cancer Society is a huge organization that offers more than just money to fund new treatments and research, they provide resources and services that help a great deal of people. While RELENTLESS Against Cancer will continue to do its part, we cannot offer these services to people because we do not have the resources. We are doing our part to donate to institutions that are doing research and working on new treatments because the research is not cheap. On top of that I want to spread a message...it's no secret that I do not identify myself with Lance Armstrong and his "Livestrong" message, and I do not support organizations who have lost their way and spend over $1million per year of donor money to sue small companies (such as mine) for using the phrase "For the Cure" in any of their fundraisers (you know which one I'm talking about). Our message is simple...the fight against cancer is something that must be renewed each and every day. Every day you wake up is a chance to make a difference. While the ultimate goal cannot be accomplished in one day, everyday we are closer to making it a reality. Our efforts must be tireless, an overwhelming opponent can only be defeated by RELENTLESS work and refusal to accept failure.
Tuesday, January 11, 2011
1/11/11
Wow, it's been one hell of a ride the last few weeks! I've done a lot of traveling, connected with old friends, held an amazingly successful fundraiser, and also went to the doctor. Let's start with the most important part...the doctor visit. When I last left off I was expecting to be put on the new treatment of Avastin and Irinotecan because most of the signs were pointing towards the conclusion that the maintenance drugs were no longer keeping things in check. I had a scan last week, and our suspicions were confirmed...the weaker drugs were no longer working and one spot on my liver had begun to slowly grow, and one spot on my lung had crossed the 1 centimeter threshold. It was much easier to hear these results than I had thought it would be, mainly because I had been preparing myself for the worst, and as it turned out, it really wasn't too negative. So this Thursday I'll be starting the new regiment which will consist of an hour long infusion with a whole laundry list of new side effects to be aware of. I'll lose some hair, but genetics and the dryness of the winter have already helped me come to terms with my future enrollment in the Hairclub for Men. The nausea is supposed to be pretty brutal, but I'm not too worried because I can always be medicated and sleep through it. Other than that, they just want me to report any discomfort during the treatment because increased blood pressure and blood clots are always possible, but they mostly look for those complications in elderly patients. I'll admit I'm nervous, not because I'm unsure of how successful this new tactic will be, but because I don't know what to expect. I don't know how badly this will suck. I don't know if I'll be bouncing back quickly and feeling better each day as I have in the past. All I can pray for is that there aren't any mouthsores...I miss spicy food!! I definitely wouldn't mind some buffalo wings with ranch sauce next time Ron comes down at Hooters haha. But we'll see what happens, I know my doctor and nurses will take care of me.
As for my travels, if you didn't know this about me, I can drive for hours on end by myself and be absolutely entertained with my music and the scenery around me. I drove to Charlotte, NC for New Year's because it had been so long since I'd seen my friends that I had grown so close with over the short two and a half years I spent down there for school. It immediately felt like old times as we fell into our old routine of sleeping in, staying out late, and making up mindless activities when we were bored (i.e. "House Golf"--using a pitching wedge and a putter with ping pong balls trying to chip and putt into drinking glasses...the wedge is only for use on the carpet and the putter is for the tile floor). It was an amazing time catching up with people I had grown to consider my family when I was at school so far from home. It was through these people that I realized home is not simply a physical place, it is the sense of family and belonging that happens when you have a group of people who care for each other. Of course this sense of family was at it's peak when we lived in our basic dorm rooms our freshman year because of our close proximity, but I can recall in great detail the first time I caught myself calling the dorm "home" over the phone when telling my friend we would wait for him to go eat dinner once he got back home...To all of my friends in Charlotte, thank you for all of the great memories and for those we have yet to form. It was an amazing time ringing in the New Year with you guys and one of these days when someone makes it big and gets rich I expect a private jet to fly me down there once in a while so I don't have to freakin drive the 11 hours!
On my way home I stopped at the University of Delaware to visit a friend whom I have reconnected with after a few years. We went to high school together and it was great seeing her. I also didn't mind being able to stop for a rest on my way back to Jersey haha. But I actually learned quite a bit about science while I was there and got to go into some of the labs and see some of the experiments they were doing. I was like a little kid in a candy store seeing all of this stuff that looked as if it should be on the set of something on the Discovery Channel. It was a short visit, but it was great seeing someone who I admire and have all the respect for in the world.
The trip to Connecticut was next for our first ever independent fundraiser "Bowling for the Battle". The toughest part was actually getting to CT. There's always traffic there, add some snow on top of that along with people who do not know their vehicle's limits = one hell of a drive up. Now I'm lucky seeing as I drive a Jeep Grand Cherokee that is an absolute beast and a blast to drive in the snow, but it was very frustrating knowing I couldn't utilize some of its capability while sitting in 5 hours of stop and go traffic for a journey that should only have taken 2 hours. So needless to say that sucked. But despite the consensus belief in my car, we made it to my aunt's house. The next day was one I had been looking forward to for months. It was overwhelming seeing old faces and talking with friends and neighbors as if we hadn't missed a beat. We had about 170 people come to the event and raised over $4,000 that we will donate to the Yale Cancer Center which has not only helped my mother defeat her thyroid cancer, but has been working closely with my family in terms of genetic studies in hopes to find the gene that torments my family and could most likely help others down the road. It was amazing hearing all of the stories of those I had not previously met, and those I've lost touch with over the years. The thing I noticed is that younger people don't really have any idea how to ask me how I'm doing or how things are going when it comes to my illness. I don't blame them, it is a delicate issue, and some consider it a very private matter. I'm not one of those people obviously. I don't mind questions about it, if anything I welcome questions because I hope I can educate and make people realize that they have to be the biggest advocate for their own health because no one else is going to tell you that the excruciating pain in your side definitely warrants a doctor's visit even if it turns out to be nothing. But the entire day was amazing. None of it would have been possible without my sister's hard work and dedication, along with the love and support of my parents, brother, aunts, uncles, and cousins. This was our first step towards our ultimate goal, it was a small step, but as I always say in golf "it was positive yardage". The only way we will rid the world of cancer is through the selfless volunteering and giving of the wonderful individuals out there. It's tough to believe, but even the smallest donation of time, money, or just listening can leave a lasting impression on someone for a lifetime.
As for my travels, if you didn't know this about me, I can drive for hours on end by myself and be absolutely entertained with my music and the scenery around me. I drove to Charlotte, NC for New Year's because it had been so long since I'd seen my friends that I had grown so close with over the short two and a half years I spent down there for school. It immediately felt like old times as we fell into our old routine of sleeping in, staying out late, and making up mindless activities when we were bored (i.e. "House Golf"--using a pitching wedge and a putter with ping pong balls trying to chip and putt into drinking glasses...the wedge is only for use on the carpet and the putter is for the tile floor). It was an amazing time catching up with people I had grown to consider my family when I was at school so far from home. It was through these people that I realized home is not simply a physical place, it is the sense of family and belonging that happens when you have a group of people who care for each other. Of course this sense of family was at it's peak when we lived in our basic dorm rooms our freshman year because of our close proximity, but I can recall in great detail the first time I caught myself calling the dorm "home" over the phone when telling my friend we would wait for him to go eat dinner once he got back home...To all of my friends in Charlotte, thank you for all of the great memories and for those we have yet to form. It was an amazing time ringing in the New Year with you guys and one of these days when someone makes it big and gets rich I expect a private jet to fly me down there once in a while so I don't have to freakin drive the 11 hours!
On my way home I stopped at the University of Delaware to visit a friend whom I have reconnected with after a few years. We went to high school together and it was great seeing her. I also didn't mind being able to stop for a rest on my way back to Jersey haha. But I actually learned quite a bit about science while I was there and got to go into some of the labs and see some of the experiments they were doing. I was like a little kid in a candy store seeing all of this stuff that looked as if it should be on the set of something on the Discovery Channel. It was a short visit, but it was great seeing someone who I admire and have all the respect for in the world.
The trip to Connecticut was next for our first ever independent fundraiser "Bowling for the Battle". The toughest part was actually getting to CT. There's always traffic there, add some snow on top of that along with people who do not know their vehicle's limits = one hell of a drive up. Now I'm lucky seeing as I drive a Jeep Grand Cherokee that is an absolute beast and a blast to drive in the snow, but it was very frustrating knowing I couldn't utilize some of its capability while sitting in 5 hours of stop and go traffic for a journey that should only have taken 2 hours. So needless to say that sucked. But despite the consensus belief in my car, we made it to my aunt's house. The next day was one I had been looking forward to for months. It was overwhelming seeing old faces and talking with friends and neighbors as if we hadn't missed a beat. We had about 170 people come to the event and raised over $4,000 that we will donate to the Yale Cancer Center which has not only helped my mother defeat her thyroid cancer, but has been working closely with my family in terms of genetic studies in hopes to find the gene that torments my family and could most likely help others down the road. It was amazing hearing all of the stories of those I had not previously met, and those I've lost touch with over the years. The thing I noticed is that younger people don't really have any idea how to ask me how I'm doing or how things are going when it comes to my illness. I don't blame them, it is a delicate issue, and some consider it a very private matter. I'm not one of those people obviously. I don't mind questions about it, if anything I welcome questions because I hope I can educate and make people realize that they have to be the biggest advocate for their own health because no one else is going to tell you that the excruciating pain in your side definitely warrants a doctor's visit even if it turns out to be nothing. But the entire day was amazing. None of it would have been possible without my sister's hard work and dedication, along with the love and support of my parents, brother, aunts, uncles, and cousins. This was our first step towards our ultimate goal, it was a small step, but as I always say in golf "it was positive yardage". The only way we will rid the world of cancer is through the selfless volunteering and giving of the wonderful individuals out there. It's tough to believe, but even the smallest donation of time, money, or just listening can leave a lasting impression on someone for a lifetime.
Monday, December 27, 2010
12/27/10
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.
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 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.
Wednesday, November 3, 2010
The Wait...
The absolute worst time for me are the days leading up to a CT scan/hearing the results from the doctor. Luckily this time my scan appointment is the day before I'm scheduled to meet the doctor so there won't be too much waiting involved. It's just sitting here waiting for the days to pass until I get to hear what is going on that kills me. I'll be the first one to admit that I spend way too much time in my head constantly thinking. I think of every scenario possible hundreds of times over. Waiting to fall asleep is the worst. I'll lay here for hours just thinking and tossing and turning. There isn't anything else I can do though besides keep busy and just let the days pass until it's time to head into the city and drink that red dye crap. I must admit I drink that stuff like a champ...the first time I drank it down in Charlotte I puked because they carbonated it for some reason. In NY they just mix it with some Crystal Lite stuff so it's just like drinking a giant juice box. But back to the point...the CT scans are the measure of progress, it either reveals that things are improving, stable, or getting worse. Of course, the first two options are always the goal. While hearing that things haven't improved wouldn't be as bad as being diagnosed all over again, but it would be pretty damn close. Getting sick and not feeling too well again isn't my fear because I can deal with that and have already overcome that once and have no reason to believe I can't do it again if I have to. I know there are still many other treatment options available and drugs that my doctor has up her sleeve for a rainy day, but I don't want to cross that bridge. Crossing one treatment option off the list and deeming it as ineffective is what I fear most. I know I can deal with whatever treatment they give me because, well, I've gotten used to the fact that the mouthsores really only go away for a few days and that it always hurts, or that sometimes I just don't have the energy to do everything. It sucks, but it's reality. I just want to know what the next leg of this journey will hold...that's what being RELENTLESS is all about though. There may be no end in sight and there is a good chance that things can change out of nowhere, but being sick does not dictate the paths I choose to walk. At the end of the day I have the final say, but I'm human and wish I had all the answers right now...
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