Friday, September 25, 2009

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.

Wednesday, August 12, 2009

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

Monday, July 20, 2009

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

Monday, July 6, 2009

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.

Sunday, June 21, 2009

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...

Tuesday, June 9, 2009

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

Friday, May 29, 2009

So my last post left off right before my first treatment when I wasn't doing very well at all...

The ride to Manhattan was very uncomfortable and I was feeling another fever coming on, but I had an appointment with my doctor and was scheduled for my first round of chemo. After an explanation of every side-effect that is possible, I was examined by my doctor and even though my blood counts and liver function was not looking very good she determined it was best to start the treatment anyway. I receive three different chemo drugs which take about two hours to prepare and mix. The wait was awful and I had to be wrapped in warm blankets because I was feeling very cold from the fever that had developed. After a wait that seemed like forever I was taken back to a small area with a reclining chair which would serve as my chemotherapy room. Since I was incredibly dehydrated from the fevers still I would have to have one I.V. filled with hydrating fluids placed in my arm, and the I.V. from which I received the chemo placed in the meta-port in my chest. I never really minded needles, but I've discovered that taking a deep breath as the needle goes in does help a lot. That trick works really well for the arms...the needle in the chest still pinches like hell when it goes in, but once it's in I can't even notice. So the process of receiving the chemo treatments takes a total of two hours which gives me some time to relax. The last part of the process is the Baxter Bottle. The pump is basically a slightly enlarged baby bottle with a balloon full of chemo drug that is pumped in through my chest over a period of 48 hours. I wear the bottle attached to my belt-loop of my jeans and it really doesn't get in the way too bad when I sleep. On the Saturday I went back to the city to be taught how to disconnect the pump, which turned out to be a relatively easy process as long as you don't mind taking a needle out of your own chest. The best part about my first treatment is that the fevers stopped immediately, and as gross as it sounds, I actually felt my liver gradually shifting back into place.

The second treatment was much easier because I did not feel terrible from fevers and dehydration anymore. So I became familiar with my regular routine for chemo: get my blood drawn, meet with the doctor, wait two hours, have the chemo pumped in for two hours, take the pump home and disconnect on Saturday night. My visit with the doctor went very well and she said my blood counts had all risen back to normal levels, and my liver function was back to normal as well. The only concern was that I had lost about 5 more lbs. so my orders were to eat everything in sight.

The third treatment started off with good news that my blood counts were even higher and that my energy levels suggested that from a clinical perspective, the chemo has been doing what it's supposed to. The bad news was that since I started my chemo the day after my meta-port was placed, the incision started to form a scab and looked as if an infection could be starting. As a result I was put on antibiotics for a week and could not take the pump home with me because leaving a needle in close to the infected site would only make matters worse. Well the good news was that I gained back 5 lbs. and I show no signs of slowing down my new eating habits. The bad news is that I do experience some of the side-effects, but I admit it could be worse. I can't tell if my hair is falling out faster than normal (thanks to my dad), but I took care of that problem by shaving my head so I keep my self esteem pretty high haha. I am very sensitive to cold...I have to wear oven mitts while grabbing things out of the freezer or else my hands will start tingling for a while. I also can't drink cold liquids because it feels like my throat is closing. Sometimes I get tired easily, but I do the activities that I can at my own pace. The last side-effect is that I have nausea that comes out of nowhere sometimes, but luckily they have given me some awesome medication that either puts me to sleep or makes that feeling go away. Luckily these side-effects only last for 4 or 5 days, then I'm pretty much back to my old self...just a lot skinnier. But just know that I am doing fine and honestly the hardest part of this process is the mental side of things. I am always positive through this and I am way too stubborn to ever give up fighting because the alternative is not being here with those that I care about. I'll keep everyone updated soon because I am going to the genetics clinic next week as well as having my regularly scheduled treatment...LIVESTRONG...I love you all.

-Nate

Thursday, May 28, 2009

Hey everyone,
I know I said I'd get to this a lot sooner, but I haven't really had the urge to write anything until now. Well here's what's been happening in the two months I've been home in New Jersey:

I've already undergone three treatments of chemotherapy at Sloan-Kettering in New York City. The facility there in Manhattan is absolutely amazing, but I guess I shouldn't have been so surprised since it's one of the most advanced cancer centers in the world. When I got home to New Jersey on April 1, I was running on about two hours of sleep every night because it was very hard to adjust to the fact that my life had been turned upside down in the matter of an hour in a doctor's office. Almost immediately after I came home I began running fevers well over 100 degrees and had almost completely lost my appetite because my liver had shifted and was pressing against my stomach. Between the nausea and lack of an appetite I've lost close to 30 lbs. since mid-March. The fevers continued for about ten days, I went to the emergency room one night because of a temperature that was 105 degrees. After determining there were no viruses or infections causing the fevers I was sent home, but was still very dehydrated and uncomfortable.

By the time I was ready for my scheduled liver biopsy and meta-port placement I was used to having the fevers all the time. I would take Tylenol for temporary relief, but breaking the fever meant sweating so profusely I would have to change clothes two to three times each night. Waiting for the nurses on the morning of my procedures I sat pleading with my body asking that the fevers would leave me just long enough for the doctors to be able to perform their tasks with no problems. Of course I was arguing with something that was trying to kill me so why should it listen? Well, my temperature began to rise and I was sent to the urgent care center, which is Sloan's version of an emergency room for its patients. In the urgent care center I was tested for infections and sent for x-rays because there was no apparent explanation for my fevers. The lack of answers mean the scheduled procedures were put on hold and I would have to be admitted to the hospital so they could determine how much of a risk it would be to perform any sort of surgery on me while having the fevers. I was in the hospital for three boring days and was so dehydrated I went through at least ten bags of I.V. fluids. After every blood test the doctors could think of was performed they determined I was most likely experiencing "tumor fevers." It is common for the tumor itself to be causing high fevers, but the problem was it was preventing me from starting my treatment.

The doctors finally decided that the benefits of doing the liver biopsy and placing the meta-port in my chest far outweighed the risks my fevers presented. The biopsy was a piece of cake and I really didn't feel a thing thankfully. The meta-port placement was just as painless and having it in meant I would start chemo the very next day. I guess I should explain what a meta-port is since I've been talking about it so much...it is a small piece of plastic that has a catheter which runs into a vein. This allows the doctors easy access to pump the chemo into me without having to stick my arms with needles everytime I go for a treatment. But everything was in place and the road to recovery was finally about to begin...