It's almost been two weeks since the first of the new treatment and I'm feeling great. School started again yesterday and I'm ready for it to be over. It's tough being older than pretty much everyone in all of your classes and having nothing in common with them. I've been forced to take a business ethics class and everyone in the class is a freshman with half of them having never worked a job in their life so they believe they've never had an "ethical dilemma". That revelation left me searching for a very solid surface for me to slam my head against repeatedly. But, alas, I survived my first day of classes and am looking forward to get Thursday over with simply because I know it will be a long day and, knock on wood, hopefully I'll feel fine again.
I've been getting a lot of messages from people throughout the course of this journey I'm on and I truly appreciate the words of encouragement from everyone, there are even messages that bring me to tears because I am beginning to realize that I might be able to help people get through adversity by spreading a positive attitude. I understand it's difficult to approach someone who is dealing with a situation that you maybe cannot relate to or feel like your problems are small and petty compared to theirs. My answer to that is simple...we all have our battles, we all have our own demons and I never for a second think that the crap I'm dealing with is ever more difficult or a bigger deal than whatever you are going through. People say that they know their lives cannot compare to mine, I disagree. I might be over-simplifying things, but I've been dealt a crappy hand of cards and refuse to fold until I can make a winner out of them...it happens to everyone at one point or another in life and what defines you as a person and says the most about your character is what you do when the shit hits the fan.
Originally, I was going to write about another Jack's Mannequin song that has helped me out, but instead I'm thinking it's a good day for motivation. It's a new year and a new chance to write our stories and to make a difference....Eventually, all of this will make its way into a book so at least I can claim to be a writer when I meet girls...just kidding (sort of). But one day I want to be able to share what this journey has been like from the moment I realized something was wrong, to where I am today. For now, this will suffice...
The day I was diagnosed was hell. I won't go into detail because I've only told a few people all of the events of that week and I don't want to start writing and leave things out because as you could imagine a lot of it was a blur. The day I was officially diagnosed by the oncologist in North Carolina I was sent a message from one of my friends who had transferred across the country because his family had moved out there. He ended his message of encouragement with a quote that has been my battle cry if you will, it has stuck with me from the instant I read it. The quote if from "The Count of Monte Cristo"....
"Life is a storm, my young friend. You will bask in the sunlight one moment, be shattered on the rocks the next. What makes you a man is what you do when that storm comes. You must look into that storm and shout...'Do your worst, for I will do mine!'"
I don't believe any further explanation is needed...
Later that day, I wrote an email to my family and tried to be as positive as I could after the horrible day I was having. I explained that whatever tough times that were ahead of me were nothing I could not handle and that I have never truly failed at anything before in my life and I wasn't about to start. My fighting spirit began on day one and I'll even admit, there were days when it was barely still alive, but you have to hit rock bottom before your climb to the top. This illness will do its worst...cancer's only job is to kill and it does not ever take a break until its mission is complete and you've been consumed by it. I have to do my worst in return and defy its mission by waking up every morning and living my life on my terms by surviving just one more day, because everyday is one day closer to a cure. Whatever you are up against, welcome the challenge and remember that you are stronger than you think because you can and will weather the storm.
Tuesday, January 25, 2011
Wednesday, January 19, 2011
Spinning
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.
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.
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.
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