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...

10/31/2010

I wrote this earlier tonight as a part of the private journal I've been keeping lately. I'm still undecided about what I should choose to share with everyone and what I want to keep to myself, but I figured I'd give this one a try. It's much more personal than everything else so hopefully it goes over well...

And just like that this whole thing became real. It hit me like a ton of bricks when I came across her facebook page. Everyone wrote their condolences and I had no idea what they meant until I came across the post that asked what color her wings were…she was gone. I remember it like it was yesterday. I was sitting there in the waiting room, nervous as all hell, but there were angels in the room that day. I never thought I believed in angels until I was sitting there wondering what was going to happen to me. It was my first appointment at Sloan Kettering and all I can remember feeling was that I shouldn’t have to be there, I was too young to be there. I looked around the room and everyone was old and looked to be in rough shape. Who was I kidding? I was in pretty rough shape too. I hadn’t had a full night of sleep in about a week and was in so much pain it was hard to sit still in one position for any amount of time. I offered a word or two as my parents filled out the paperwork with so many questions I couldn’t even keep track. Truthfully I wasn’t really concerned. My mind was in a million different places, all of which were somewhere other than here. A gentleman came up to us as we huddled around the paperwork and said, “Excuse me, but are you a cancer patient?” Cancer patient?!? And that’s when it hit me. That’s what I was. I was no longer the normal 21 year old college kid with nothing too much to worry about other than how much spare money I had for beer this weekend or which girls paid noticeably more attention to me lately. But no, here I was sitting in the waiting room of a hospital for people with cancer. I hesitated for a moment and then replied that I was a patient. This was the hardest admission of my life. I’ve been caught in lies and have been forced to admit when I was wrong, but admitting that I was a cancer patient was the most difficult thing I’ve ever had to tell anyone. He handed me a bracelet which read ‘I am Strong’ and looked me dead in the eye and told me that I was in the best hospital in the world. He was a survivor of a radical surgery in which the doctors removed most of his vital organs and then pieced him back together. He saw how worried I was sitting there in that room and said he just knew he had to come over and talk to me. I wanted to break down and cry right then and there in front of everyone, but I was already being stared at by since I was so young and in such bad condition that I couldn’t give in to my emotions and show weakness on only my first day. I saw him once more after that while I was waiting to have a colonoscopy done at the main hospital building. He was standing in the hallway and shook my hand and told me that there was nothing to worry about because I would be taken care of. My second angel came in the form of a small blonde who I had stolen the title of ‘Youngest Patient’ from. She knew just how to keep me calm because she had been in the same situation as me a few years earlier. She even handed me a Victoria’s Secret magazine during one of my future treatments because she knew how much the chemo sucked, so she thought she’d provide me with some enjoyment. She always knew how to put a smile on my face long before I realized that it was ok to smile or laugh in a place that was in the most serious business of all. I wasn’t too sure angels ever existed, but I have always believed in signs from God or whatever it is that is out there. Maybe there are just strange coincidences…but I have experienced things that sometimes show evidence that something else is going on. These people knew that they needed to come and speak to my family and I. They were compelled to share their stories as something for us to use as hope. I’m not sure I would have made it through those first few days with the strength that I did had I not met those very special individuals. I am forever grateful I did meet them though, and I know that I’ll see them again, hopefully not for a very long time, and be able to thank them for having the courage to come and speak to the new kid who was sick and terrified of the journey that lay ahead of him. That is why I am doing all of this…who knows, maybe someday I’ll be someone’s angel…

Hmm...

It's going to sound very strange, but perhaps the most frustrating part about this whole thing is the fact that I feel fine most of the time. Weird, I know. Who would want to feel crappy all the time? I'm not saying that I wish I were sicker, because believe me, I am incredibly thankful for the fact that I can pretty much go about living a normal life and pursuing everything I wish because I have responded so well to treatment thus far. I just get nervous sometimes because when things first started, I was so sick that it was very easy to notice improvements in my condition. Now though, I have no clue what the hell is going on inside my body. Now I simply have to wait and see what the CT scan results will say every few months. There wasn't as much worry when I could tell I was improving because I would be gaining weight or having more energy to actually make it through an entire walk around my small neighborhood. I remember when I was in the hospital, I had trouble simply walking up and down the hallway. That's when it was easy to stay motivated. That's when every extra step I took during those times when I wasn't sure I could keep going, those are the steps that would mark my improvement. Now though, I feel great which is pretty stupid to complain about. Now I worry. Now it scares me so much to even think about receiving bad news that I don't think I slept the night before my meeting with the doctor when she revealed how things were looking. It's a relief when things are going great, but that one time when things changed a bit towards the negative that it was such a crushing blow. Not as difficult as it was when hearing the original diagnosis, but pretty damn close. If things aren't going so well there's no one to blame. I can't blame myself because there is nothing I could do to improve my odds. I can't run one extra mile on the treadmill. I can't study harder. I can't do any sort of work that will help. It's incredibly frustrating. The only thing I can do is put my faith in modern medicine and do my part in fundraising towards an eventual cure. The day will come when all a patient will have to do is take a pill or have a few infusions to eliminate the cancer. All I can do is wait and stay positive until that day comes. All I can do is continue to live each day to the fullest and continue without any regrets. To sit around and feel sorry for myself would be the same as giving up. People give me credit, but I don't always understand it. I guess I just find it hard to believe that anyone would ever choose to accept defeat when you're in the fight for your life. I have so much left to accomplish, so much more I can do, and I see no reason why I won't.

October 2010

Wow, it's been a while since I've updated this! When I last left off, I was still receiving the basic treatment and things were going well. One of my CT scans showed signs of the growths on my lungs starting to show up a little more noticeably. This result prompted my doctor to elect to put me back onto the oxaliplatin chemotherapy. Hearing that things weren't still going as planned was such a shock. Not quite as shocking as my initial diagnosis, but it blindsided me. I was a bit shaken because I knew that the next few months weren't going to be enjoyable since I knew what to expect from my previous experience with this treatment. The side effects would make me incredibly tired, nauseous, and sensitive to cold. The only problem with this treatment was that it is very risky to re-introduce it back into your body. My body was already trained to recognize that this stuff was going to wreak havoc on my system and really throw me for a loop. The first treatment didn't go too bad, it was just difficult getting used to the idea that I would have to be hooked up to the IV for two hours at the hospital instead of the thirty minute treatment I was used to. The next few treatments didn't go as well though. There is a high risk of having reactions to the treatment when it is brought back into the regiment, sometimes it could even be fatal. On my second treatment, I awoke about halfway through the process with incredibly itchy palms, a rash on my face and chest, and profuse sweating. I felt fine, but apparently that's when there is a very large risk that your throat will close and you could stop breathing. I don't always take risks like that too seriously, but once there were five nurses and one doctor all in my room taking measurements and hooking me up to machines to take my vitals, I realized just how serious this was. It reminded me of the scenes you'll see on tv in the medical shows when a patient is "coding." It was a pretty scary incident, but I was given some incredibly powerful sedatives similar to benadryl and don't really remember the rest of that night or the day after. My next treatment was to be drawn out to take four hours instead of two. The reasoning behind this was that maybe a slower infusion would mean that my body would not react quite so harshly. Well, that didn't help either. I reacted pretty much the same way and was treated to the same dose of sedatives to help curb the effects. The ensuing treatments pretty much went the same way and I simply decided I would have to suck it up and do whatever the doctor deemed best. The oxaliplatin treatments lasted about five times when the doctor finally decided to go back to the old routine of the 5FU and leukavorin which was such a relief. That's about where I am now with the treatments, but my next posts will get into the formation of the foundation as well as some new genetics testing which is now available.

Winter 2009-2010

There hasn't been much news to report on my progress. Things are still going in the right direction with this current method of chemo. I'd like to report that I am in great shape and the only side effects I experience are mouthsores and nausea. I go to the gym almost everyday and I'm closing in on 170 lbs. It's been amazing to see how my body has repaired itself from being on the verge of death to being in some of the best shape of my life. We will keep this routine for at least another month until another CT scan is scheduled which will reveal if we need to be more aggressive in our approach. Lack of progress will result in going back on the potent Oxalliplatin which will make me sensitive to cold, lose some more hair, and feel just plain miserable for a few days. I've been keeping myself busy lately by picking up a part time job at Best Buy. It's pretty mindless and is a constructive way to earn some money at least instead of being bored to death at home. I'll be starting school in a few weeks at Fairleigh Dickinson University and will be commuting this semester which I'm not looking forward to. I'm excited to be going back to school and knowing what I want to do now. At Charlotte I was always waiting around for something to happen that would make me sure of the career path I was starting down. My whole experience has made me see that I won't be able to make a difference by becoming an actual doctor because the harsh truth is that there is a lot of uncertainty and time is of the essence. I will continue in the field of finance and pursue an MBA in healthcare administration. My ultimate goal will be to work with Sloan Kettering or a similar organization in an administrator's role who will have a unique perspective due to my familiarization with the healthcare industry.

I'm also working on a side project with my best friend Ronny. We've always tried to be entreprenuers, but we would come up with ideas that we were not ready to tackle. This new project is something that will be charitable and show a different side to the fight against cancer than that which has been advertised by the Lance Armstrong LiveStrong Foundation. His foundation focuses on being "strong". (Obviously). Mine will focus on what it takes to persevere through the difficult times that every patient will inevitably experience. This idea came to me when I was feeling very down about things. I will not lie to anyone who wonders what it's like, or has to live with (and hopefully through) being a cancer patient. It is the most difficult thing you could ever imagine. I can handle any physical task that is thrown my way. I can handle having a few tough weeks and feeling like I'm in a rut. I thought I could handle this...I was wrong, but only for a short time. When I was first diagnosed I was told to be strong and stay positive. The words of encouragement can only get you by for so long until you yourself have to actually believe in them. The words of encouragement are like playing with "house money." At first everything seems fine until it runs out and you're left with nothing but yourself crying over a bowl of spaghettio's because you just realized your life will never again be the same and never again be seen as "normal." I wear bracelettes to remind me that I am capable of a strength no one may every truly know. I was at a point in my life where the fire had seemed to burn itself out. The drive to live, the drive to succeed were fading. There have been many times I've simply felt as a burden to my family both emotionally and financially. I'm not proud of having those thoughts, but at the end of the day I can only give myself a break because I am human. Sure, I've debated just hopping on my motorcycle and heading out west so no one would have to deal with what could possibly be my inevitable fate. How selfish of me. That's not who I am. Since when did what I think have to come first? It didn't, and it never will. If you stare into the bathroom mirror long enough at a 135 lb frame of what used to be yourself, there will still be a hint of that fire burning in your eyes. It may be very tough to recognize because it has been a while since you've felt its warmth, but it's still there and can be rekindled as long as you will let it. I decided it was time to put everything I had left into this life that has been given to me. If the efforts weren't entirely for me, they were for my friends and family who offered those words of encouragement at the beginning of things. I can't let them down. There's no way in hell I can do that. I read an article about a collegiate wrestler who was diagnosed with a rare form of cancer that took his life after two years. He also wrote a blog, and after his passing, a family member wrote that he had "Lost the battle to cancer." I'll be damned if those words are ever uttered in the same sentence as my name. From that moment on I promised myself that I would not rest or let myself hit rock bottom again. There may be some tough times ahead of me, even tougher than things have been. They could be painful, could be lonely, could be tiresome. This is my journey and it is no longer time to feel sorry for myself. It is time to give back and if the day comes when it's my time, then it will be when I have given everything I could, my knowledge, compassion, and spirit are what I will leave behind. I want to spread my attitude to those in the same situation as me. It may not look good, and there is way too much that is uncertain, but impossible is not in my vocabulary. I know I can do this, I will fight this battle and it will end when I say it's over, this disease will have to do its worst, I am not a professional athlete, I do not have to be the strongest because I am RELENTLESS.

August-September 2009

Well it's been a while since I've updated this, but there really hasn't been too much to write about. Lately the routine has been the same, sometime I'll head over to Sloan just for treatment. The new regiment of chemo they have me on is so much better than what I was on before. The drug oxalliplatin is very potent and has a cumulative effect on the body, so my side effects started to get so bad I didn't even have the energy to get out of bed for two or three days. Since then, my doctor deemed the risks of continuing the oxalliplatin far too much considering I probably wouldn't continue to benefit from taking it. So now I barely have any side effects at all and just continue to go into New York City every other week for treatments. Some good news is my doctor has given me the "ok" to head back to school for the spring semester which I'm really looking forward to. Obviously I won't be able to return to school in Charlotte since that commute to NYC every other week would be impossible. I'm looking at Seton Hall and Fairleigh Dickinson as my two choices since I'll be able to commute from home, both are a little under an hour away. Throughout the last month or so I've come to the realization that I could be doing this the rest of my life. All I can do now is just pick up the pieces of the life I once had and try to rebuild the best I can around my situation. It is unfortunate and people tell me that I have terrible luck and that they don't know how I do what I do and haven't fallen apart...the answer is quite simple actually...I do this because I have to, because I hope I can be an example for anyone else who has difficult things to deal with in life. I always remind myself that it could be much much worse.

We've been doing a lot of work and collaboration with the genetics department at Sloan Kettering and also Yale because apparently my family is incredibly unique with this situation. This fast growing and early development of cancerous tissues is not only found in myself and my siblings, but also other distant relatives. All of this points to some sort of genetic mutation that only needs to come from one parent, and is almost definitely from my father's side of the family. I've also been contacted by the Cleveland Clinic to participate in a study they are organizing...there may or may not ever be results from this study, but if there is anything I can do to help my family or anyone else I will gladly do all I can. The study that Yale is doing is called a "Linkage" study which the genetics people at Sloan have not had to conduct in almost ten years...that just goes to show how unique this problem within my family is. All in all I gave about seven tubes of blood (not fun) to the two studies, so now all we can do is just sit and wait and hope that something can be discovered...that's all for now so LiveStrong everyone and take a moment to pause and take in a deep breath and smile just to appreciate all that's around us.

July 30, 2009

Sorry I didn't get around to writing this post sooner, I spent about 9 days in North Haven just to get my mind off of everything and to see all of my friends before they head back to school in a few weeks. So we had an interesting trip to the doctor last time...about two days before it was time to go for chemo my side started hurting very badly like someone had hit me with a baseball bat or something. The pain was exactly the same as what I had been experiencing at the very beginning of things back in March which prompted me to go to the doctor in the first place. So needless to say it was a very anxious two days for me because I had no idea what was going on and couldn't help but fear the worst. It was very difficult to sleep the pain was so bad and the pain killers only put me to sleep for a few hours before they wore off and I immediately awoke. I called the doctor's office to inform them of the pain I was experiencing and they immediately scheduled me for a CT scan first thing in the morning I was supposed to come in. It was a very long two days waiting for that scan...my thoughts ranged from either something was shifting around in a good way or that I had stopped responding to the treatment and things were taking a turn for the worst. I arrived at the hospital Thursday morning not knowing what to expect. The day I was diagnosed had already been the worst day of my life and probably my parents' lives as well, I couldn't bare the thought of another day like that again after things had been looking somewhat promising. I proceeded to do what I had to for the scan and we then had to wait about an hour for the results so we grabbed some breakfast that I wasn't very enthusiastic about eating. When we got into the doctor's office I met with my nurse at first to discuss the side-effects I had experienced from my last treatment and if I needed any of my prescriptions refilled. On her way out she gave me a wink and said not to worry because I was about to receive good news from the doctor regarding my scans. So as it turns out, one of my ribs is broken. My doctor said it looks like an old injury that just hasn't healed...what a relief! I can't help but wonder if this broken rib is what caused me to go to the doctor in the first place, if so, then thank God. Well that was certainly a load off my back to say the least. She then went on to say that nothing has really changed since my last scan, but it had only been a few weeks since my last one. Another piece of good news was that I was going to be taken off of the chemo drug that was causing most of my fatigue and other side effects. The process only took about a half hour a the hospital and I still had the pump to take home with me for the 48 hours. I experienced very minimal side effects and was up and out riding my motorcycle all day Saturday...so all in all things turned out to be pretty good...I just want to thank everyone though in North Haven who I had seen or hung out with over the last week. It really meant a lot to me to see some old faces because I'll admit it does get tough out here in Jersey without seeing some familiar faces too often. It's funny how I wanted to get far away so badly for college, but now I go up to visit and I don't want to leave...somehow hanging out with everyone in a community that has shown me so much overwhelming support makes me forget everything that is going on with me. I'm so thankful for my friends and family and everyone who has sent me their best wishes and prayers because it means the world to me and it's honestly what gets me out of bed every morning. I'll be heading back to the doctor this Thursday and then down to Charlotte next week to visit some friends before they have to start school again. I love you all...LIVESTRONG