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

My last treatment on July 16th was a bit more rough on me than the previous ones have been. It started with the usual routine of having my blood drawn and meeting with the doctor. She discussed with us that the direct chemo into my liver might not even be used on me, but if we did need to cross that bridge it wouldn't be for a few months. It was tough after hearing the good news of the previous visit that I'd be doing this regiment of chemo for probably another 6-9 months. After that my body would get a little break from it for a few weeks then go right back on it. We'll just have to wait and see what happens which is tough, but one way or another I have to keep going even if there isn't an end in sight. This round of treatment left me exhausted which was not fun because I pretty much rotated from my bed, to my chair, to the couch, back to my bed for about two and a half days. It was frustrating being so tired because the weather was so nice and I wanted to get out and do things, but small tasks like going to the kitchen to make a meal was like climbing a small mountain. On Sunday I finally felt better and went for a long ride on my motorcycle up to Orange County Choppers who was putting on a car show. It was a good day and finally nice to get outside and enjoy riding through the back roads with their beautiful scenery...This Wednesday we'll be meeting with the people at the genetics clinic to discuss the results and suggestions for the rest of my family so I'll be keeping my fingers crossed that they were able to identify what is causing all of this mess. I hope everyone is doing well...LIVESTRONG

My last trip to the doctor at Sloan Kettering was one that I was pretty nervous about since I would find out the results from my CT scans. Getting the scans done was no problem and I did not throw up the dye that they make you drink, which I am pretty proud of myself for. I guess I was nervous simply because the only other time I went for a CT scan my whole life was turned upside down with the cancer diagnosis. Luckily this time was much different. I had my bloodwork done and was weighed in at 150lbs. which is a typical weight for me when I haven't been working out regularly. When we met with the doctor she informed us that everything in terms of function with my liver has returned to normal. The scans revealed that I am responding very well to the chemo and the focus for my treatment has now shifted to my liver. The doctor told us that she is no longer worried about my colon, and the tumor was barely visible on the scans. The original scans showed that I had a few spots on my lungs which were very small in size and of very little concern. Those spots have shown no changes which could mean they are of no threat to my health since every person has some sort of small spots on his/her lungs. The scans also showed evidence of the cells dying in the tumors on my liver, but there is still a long way to go. So now the plan of attack will be focused on the liver. My doctor is going to collaborate with one of her collegues about a type of chemo that would be pumped directly into my liver through my abdomen. This new treatment probably won't be for a few more months, and in the meantime, I'll still be receiving my regular chemotherapy treatments. I'll admit the routine does start to get old after a while, but there are no other alternatives and every bit of good news helps along the way. Well there's really nothing else too exciting to report, but I hope everyone is doing well and I love you all...LIVESTRONG.

On June 18th I went for my fifth chemotherapy treatment at Sloan-Kettering. Prior to the treatment I met with my doctor who was very pleased with the way my blood counts and liver function has been responding so far. Since this was the fifth round of chemo, they want to do some CT scans on the 24th so hopefully they will be able to get a better idea of exactly how much progress I've made. The chemo hasn't been too bad this time...I really didn't experience any side-effects except for a runny nose and I slept for pretty much the entire day on Saturday, but I really can't complain when I see how other people at the hospital are reacting to the chemo. Like I've said a few times before, the hardest part of this process is that I feel fine...I have started going to the gym every night, but it is hard being in there and having to take it easy while my inner athlete wants to push my limits. As boring as it is in New Jersey I'm starting to adjust and our new place is starting to feel like home. I'm looking for a part time job or something small just to keep me busy during the day so I don't drive myself too crazy...I'm also starting to research some of the schools around here that I might be able to commute to so this way I don't fall too far behind in my studies. Of course, being a finance major, I might want to stay in school a bit longer due to the economy...but we'll see, I'm in no rush. I'm just looking forward to Wednesday and getting these scans done so we can see how things are going. I'm not sure when we'll get the results of the scans, but I'm scheduled for my regular chemo treatment on the following Thursday July 2nd, so perhaps we'll have to wait until then to meet with my doctor. There hasn't been any news yet about the genetic testing, but my doctor believes we should find out whether or not it was successful in the next week or two so I'll be keeping my fingers crossed in hopes that they were able to isolate this genetic mutation. We did get a bid of good news this week because someone in the family (I won't mention names in case they don't want me to) had a colonoscopy done and there were growths that were found. Thankfully everything was removed and the tests showed that nothing had started to develop any sort of cancerous cells yet. Like I had mentioned earlier, screening for this sort of stuff doesn't start until you're closer to being 30 years old...this person was much younger and my doctor said it was a good thing everything was found now because a few more years would've meant someone else in the family would have to follow a similar path as mine. Hopefully I'll have some good news to write about in the next two weeks, but just remember, you have to be an advocate for your own health...If you suspect something isn't right then go see the doctor even if it ends up being nothing you will have that peace of mind. I love you all and LIVESTRONG...

June 3 & 4, 2009

This week was going to be busy since we had to make two trips into the city, one for a consultation with the genetics department and another for my regular treatment. The Wednesday trip to the genetics facility was relatively easy for me, but it was up to my Dad to try to remember a lot of the medical history for many of my relatives. After discussing everyone's medical history from my grandparents and their brothers and sisters to my youngest cousins, the woman we were working with made suggestions concerning who should get tested and/or colonoscopies in the near future. The field of genetics is one that is cutting edge and can offer the keys to early detection in certain types of cancers...the unfortunate part is that there is no guarantee they will be able to find the exact gene that has been mutated. That being said, the doctors will still make screening suggestions pertaining to each family member solely based on our family tree. After we had the uncertainty of this process explained to us we then went over what they do know about certain types of genetic mutations and their links to colon cancer. Basically there is an acronym for everything in medicine, so I don't remember all of the mutations and syndromes that were explained to us. I only had to have some blood drawn for the tests and we will hear the results in another two to three weeks. Hopefully they will be able to identify a specific mutation in my genes, because that would be the most help to the rest of my family. Of course any discovery of a faulty gene won't help me at all, but there is a reason for everything, my burden could possibly be the key to saving a family member's life. So far many members of my immediate family are going to get their colonoscopies done even if they aren't supposed to for a few years. A person with a family history of colon cancer is not supposed to have a colonoscopy done until they are 25-30 years old. I am 21, and it takes somewhere around ten years for a pollup to grow into cancer, and who knows how much longer to reach your liver. There's a chance this has been growing inside of me since my early teens, so it is a good thing everyone is getting themselves checked now...the last thing our family needs is another surprise like mine.

Ok, so hopefully I'll have some good news to report back in a few weeks about the genetic stuff. This brings us to Thursday June 4th which was my fourth chemo treatment. The scab that I had talked about last time had healed up pretty good and the nurses deemed it safe to give me the full dose this time. I didn't have an appointment with my doctor since I had seen her the day before at the genetics site...turns out she's probably the smartest person I've ever met because she studies genetics on the side of treating colorectal cancers. So I received the full two hours worth of chemo which was no problem at all, and they hooked up my Baxter bottle so I could take it home for the next 48 hours. I rested over the next two days and unhooked the pump with the help of Lacey (who is studying nursing so I figured it would be good practice) on Saturday. Unhooking is a very easy process that requires sanitizing everything with alcohol wipes and two injections. A syringe of saline solution and one of heparine are injected to clean the port and then prevent any blood clots from forming. After the injections, we carefully remove the tape that keeps everything in place (even shaving doesn't make this pain free). Finally the needle is removed from the port with a good tug and chemotherapy has been completed. Luckily I didn't have very many side-effects this time...only a little bit of sneezing and a runny nose, and a little fatigue, but it really was not bad at all. In another two weeks I'll go for my fifth round of chemo. After that, they should be doing all of the body scans on me to check my progress and see if there are any changes that need to be made to my treatment. Well that's about it for now, but I love you all...LIVESTRONG