9/16/11---Update

Well I haven’t gotten on here in a while to update things because the road has continued to be just as rocky as it has been the entire summer. I’ll start with the brain treatment and go through the events leading up until now and hopefully be able to explain why I’ve sort of disappeared without hurting anyone’s feelings…

The brain treatment went according to plan and the doctors are extremely happy with the results. The actual procedure was hell…it was a test of endurance and was terribly uncomfortable. My head was locked into place and the entire procedure took about three hours without being able to move at all. I was laying on a carbon fiber table, which is an incredibly hard material, that offers no cushion or give whatsoever. My head was not just locked into place, but it was pressed into place which after a while became so painful I could have sworn the back of my head was bleeding. My tailbone and back began hurting incredibly bad too because of the table, but I was not allowed to move any part of my body in fears of throwing off my head positioning by even the slightest bit. By the end of the procedure I felt like I had run a marathon…I was close to tears twice during the treatment when the pain started to become unbearable, my back and head were sore, I was sweating, and my head felt a little off from normal. At home I experienced a few headaches and slightly blurred vision, but other than that I felt alright.

A few days later we met with the doctor who performed my SIRT procedure. It was a very quick appointment and we learned that the liver was in decent shape. The first round of treatment when he was only able to get about 60% of the radioactive material packed into the tumors showed some signs of concern. There was still a bit of activity going on in terms of disease, although it was less than it had been prior to the operation. The side of the liver from the second treatment when he was able to get over 90% of the radioactive materials packed in looked great and showed no signs of activity from the disease. The best part is that he is able to repeat the procedure on the troubled side of the liver in the future although that wouldn’t be for a few months since my body has gone through so much in such a short period of time.

The Thursday of that week we met with my regular oncologist who we were hoping was going to review the rest of the scan results and present a plan going forward for us. The last few days however, I started to develop some pretty bad back pain that was starting to radiate down my right leg. In the waiting room, this really started to cause a lot of discomfort and I had to lay down on the couch. When we met with the doctor I had to lay down the entire time because my leg was in incredible pain and was only comfortable in certain positions. The meeting did not go as great as we planned. While she was happy about the progress the liver was making, there were still the small spots on my lungs which had some time to get a little bigger, and the new developments with my spine and brain were not steps in the right direction. Our options came back to something we started to try but never really gave a fair shot…xeloda pills. This is basically a pill form of the 5FU chemo I had previously received, but it does act in different ways which might be able to help me. The tough news was that the clinical trial we were positive I’d be able to try had the xeloda failed, I am no longer eligible for due to the metastasis in my brain. Unfortunately there is no way to fight the rules of a clinical trial. The worst part was that my doctor did not have any immediate suggestions or alternatives of what to do. The xeloda is pretty much our last mainstream option for treatment so we need to come up with more options. The pain in my back/leg we figured was being caused by the inflammation around my spine and could have been affecting a nerve just like sciatica. So the plan for that was to give it a few days and if it didn’t improve then I’d call her.

I was pretty down from the news we had gotten at the doctor and it took me a few days to really take it all in because it was a very difficult pill to swallow. I had my phone off for a few days and didn’t respond to much in terms of email or texts…I just wanted to have some time to figure things out. My spirits were lifted though a bit when my dad told me of an email he received from my doctor saying that she had found some possibilities of clinical trials that we could look into that allowed for brain metastasis which was under control. The plan for now would be to start the xeloda for about a month and gauge how I am feeling to see when the appropriate time to look into one of the clinical trials would be.

That takes us up until the last weekend of August and I can tell you that a lot more has happened since then. I’ve decided to keep this one a little more private. While I was in the hospital for the last two weeks I decided to keep that part of my battle between myself, my family, and a few close friends…I’ll have another update for everyone shortly, but I am still on a lot of the same medications I was on in the hospital so I am frequently drowsy and sometimes have a hard time sitting down to write. So for now I’m just taking it one day at a time and controlling the things I can control…this is just another bump in the road. Thank you all for the continued support and be RELENTLESS in everything you do.

8/18/11 --Here We Are

So much has happened over the last few weeks I’m still trying to put it all into perspective so for now I’m just going to give a medical update and let you know where we stand. I stayed in the hospital for two weeks and received ten rounds of radiation on my spine in hopes of reducing the swelling and controlling the pain. I’m still on steroids for the inflammation and the pain has started to get better, although all of my activity at the NJ State Fair last week probably didn’t do much to help speed up my recovery. Oh well, it was worth it and I’ll finally have some time to rest coming up. I’ve lost a lot of weight though. I’m down to about 138 lbs. and I started the summer off close to 170 lbs. It’s a good thing these steroids make me want to eat just about everything I see, but I need my body to start cooperating so I can actually do some physical activity and gain some muscle back because it’s so much harder to put that weight back on without doing too much running around. Today I went for a PET scan which was ordered by the doctor who performed my SIRT procedure so he can check the progress of my liver and how the radiation is hopefully doing its job to destroy the disease. Tomorrow I am scheduled to undergo a very highly concentrated dose of radiation to the lesion in my brain which is supposed to be over 90% effective in killing the entire mass. Of course there are risks…many of the risks pose such a small threat they aren’t even worth listing, but it is a high dose of radiation into my brain so I guess nothing should be taken for granted. I went through the simulation stage of this procedure the other day and hopefully everything goes just as smoothly. I’ll lay on a table similar to having a CT scan done except I’ll have my head held down by a device that looks like it should be used in some type of torture chamber instead. I had a custom mouthpiece made which hooks into a metal housing which will force me to be locked into the table. There’s no way my head will move during this as a vacuum will provide extra suction through the mouth piece just for safe measure. To make sure everything is lined up correctly, they made small tattoos on my eyebrow and each side of my head at my hairline (they look like freckles so it’s not exactly Mike Tyson). Only difference between Monday and tomorrow is that tomorrow they will actually be applying the high dose of radiation. Apparently the procedure will take about an hour and a half and I’ll probably lose a small patch of hair about the size of a dime…small price to pay which is fine with me.

There aren’t many side effects, I just need to be careful and report any changes in my vision or if I start having bad headaches that won’t go away. The worst part though…I can’t drive for six weeks because I will be at a higher risk for seizures. This presents a major problem since I’m a commuter student. I’ve weighed all of my options over the last few days and decided that trying to be a full-time student strictly via email until I can finally make it to class in October would be silly and unnecessarily stressful for me. Unfortunately, I’ll have to take a medical leave of absence for the semester. I’m not happy about it, but I just want to get all of this taken care of. I want to get back into a somewhat predictable routine again where I can expect when I’ll feel like crap from chemo or other treatment. It’s been one long and way too exciting of a summer for me and I don’t want to add any extra stress because I just need to focus on getting myself better for a while. The time off will give me a chance to put all of my energy towards RELENTLESS Against Cancer and perhaps start writing a bit more. My time in the hospital forced me to take a very deep look into some issues I had been avoiding for some time. I’m sure it’s standard procedure, but once someone develops a brain tumor, the hospital support staff sort of forces you to start asking the tough questions of yourself and really take a look inward. I’m very thankful I had that opportunity because there’s a lot to think about and consider. I may not make it seem all that serious, but a brain tumor is a brain tumor…that’s as serious as it gets. I’m not scared or nervous about the procedure tomorrow. Things such as pain and side effects don’t bother me anymore. I just want it to be successful. I just want to get those scan results next week and hear from my oncologist next Thursday that she’s confident in whatever plan she has for me going forward. I’ve had an entire summer of getting kicked around by this thing and I just want to know that it’s going to be our turn to be on the offensive.

I’m still trying to put into words how amazing the NJ State Fair was so don’t think I’ve intentionally left that experience out…next week when I finally have some time to relax and reflect I’ll get it all written down because it truly was one of the most fulfilling weeks of my life. But thank you all so much for your love and support throughout all of this…you make it easy for me to hold onto the precious hope that keeps me going everyday.

7/30/11-- Wrong Turn

This entire journey over the last two and a half years has been one of incredible uncertainty. The entire time though we always thought we knew what could or would happen if things started to take a turn towards the wrong direction. We always thought things would start spreading to my lungs and the tumors on my liver would continue to grow and eventually cause the organ to stop functioning properly. Well, a week ago, cancer reminded me that it does not follow any sort of plan, it does not try to be predictable, and just when you think you have it figured out, you don’t. My world was turned upside down again about a week ago by some developments that not only caught me completely off guard, but have shaken me to my very core. I was just about recovered from my SIRT treatment and was beginning to feel better with the occasional bouts of nausea. I was experiencing a lot of pain and a lot of fatigue however, and I was keeping up with it for a time with my medications, but it eventually caught up to me and knocked me on my ass. Last Friday I finally got out of the house to grab some lunch and came home very tired and my back was pretty sore which was expected because it was the most I had exerted myself in some time. As the night wore on, however, I noticed that my back was starting to get even stiffer and I was in excruciating pain at about midnight. Saturday morning, my father had to run to get my pain prescription filled and the pain was so horrible I tried laying on the floor to see if the flat surface would help. The pain was so bad I really hadn’t eaten much and running on a stomach full of oxycodone meant I was pretty nauseous and needed to throw up. After struggling to stand up, I made it to the bathroom and did my thing. My dad came into the bathroom and I experienced something very scary, I was not able to stand up from a seated position. I did not have the strength and it hurt too much to do something so simple. That was the final straw, it was time to call the doctor. The doctor I spoke to on the phone made me realize that something very serious could be wrong if my spine was out of whack so I told my parents it was time to head into the urgent care center in the city.

We got to the city and I spent a few hours going back and forth between hydration fluids as well as morphine for the pain. I ended up getting an MRI of my spine done and it revealed some inflammation around my spine which is related to the cancer. The main concern here is that the inflammation can affect the spinal cord and eventually cause either the disks or the bones to contract and cause paralysis. The doctors decided to admit me to the hospital and begin treating me with powerful steroids as well as radiation to my lower back. The bad news didn’t end here however…

Since the pain was in my spine, it is protocol to also do an MRI on the brain since it’s all related. The MRI revealed a very small 7mm lesion on my brain which has not affected my function at all which is a very good thing. They are still deciding if they want to treat the lesion with radiation to the entire brain or a very directed method which is very powerful. The neurologists still have time to decide what the course of action will be for that because they caught it so early. One more test we are waiting on is the result from the spinal tap…which is not a fun procedure even though they numb you, try to imagine a giant needle being shoved into your spine. I honestly forget what those results will even tell us, I just know that I have to do at least ten rounds of radiation on my spine and will be in the hospital for at least another week. I’m a bit out of it because of all the pain medications they’ve been giving me, but I need them. The pain in my back gets unbearable without them. All in all I’m not sure what is going to happen. I just know that I’m incredibly lucky to have such supportive friends and family and there’s no way I’d even come close to holding it together without them. I’m just taking it one day at a time and trying to stay as active as I can by walking around the halls and talking to everyone. We’ll see what happens…sure I’m scared, and sure I’m still confident that I can and will come out on top of this thing, but this is not how I expected anything to go. One day at a time…I’m sorry I’m not super insightful or very descriptive for this post, but it’s tough to stay awake and stay focused on things for very long. Hopefully I’ll have some better news to report next time, but being relentless means sustaining your efforts when it is understandable to give up…just can’t give in…one day at a time.

7/12/11 SIRT Part 3

Leading up to this last of the SIRT treatments I was feeling terrible...it was the worst I've been in a while. Everything was starting to catch up with me. I was undergoing chemotherapy, external radiation on my rib, and about to repeat an internal radiation procedure which I had almost six weeks ago. The radiation on the rib really threw me for a loop and made me incredibly sick. I couldn't keep any food or liquids down for about two days. At that point the dry-heaving was so miserable I couldn't even drive my self to my appointment and my mother had to come home early from work so I could receive my radiation as well as some hydration fluids through an IV that the doctors thought were a good idea. It's a good thing I received those fluids because I was in pretty rough shape heading into that weekend and I most likely would have wound up in the hospital at some point. But I survived that weekend and had my last radiation session on my rib which is thankfully starting to feel a bit better. I'll just have to take it one day at a time there because I can't forget I still fractured the bone a while back and it needs to heal at some point.

Each phase of the SIRT treatment has been different in terms of what I experienced, what I was awake for, what I felt, etc. This one was the absolute worst of the three. Things were running a bit behind that day in the surgery center so I could tell I'd have to wait a bit longer which wasn't much fun since I hadn't had anything to eat or drink in over 12 hours. The wait was uncomfortable because I was still in some pain from my rib and I elected not to bring any pain medicine with me for the trip like an idiot. Anyways, once I was back and getting all set up for the surgery I was brought into the room and everyone was already talking about having to stay late because their first surgery went long. I completely trust the doctors and surgeons I see, but it's not always comforting witnessing everyone being asked if they could stay a bit late if mine goes overtime. Oh well...we were underway...bring on the anesthesia! Wait, no anesthesia? What's going on here? I don't know if this was done in order to save time or if I just got lucky my second time and my dosage of drugs was high enough to keep me asleep the whole time, but I was wide awake for too much than I'd like to recall.

The nurse affirmed that she was in fact serious that the folley would be inserted as I was awake and being prepped to go. I won't go into detail but my instructions were to "Clench your toes and hands." Awesome. After I was put on the operating table my arms and legs were strapped down accordingly and I was really hoping this would be the part where I take my nap and wake up in recovery...wrong again! "Ok this should be the worst part," a voice said as the needle pierced the skin near my groin to deliver its numbing agent. Before the area was completely numb the incision was made and I winced at the sting. I did finally become a bit groggy during parts of the procedure, but there were times I was able to sing along to the songs playing over the speakers, inform the surgeons who was singing a particular song they couldn't figure out, and at one point hear my surgeon tell the nurse to "Give him something more because he is completely awake." I wish my adventure ended there, but that would be letting me off the hook too easily. When it came time to inject the radioactive material I had no idea that I was about to experience some of the worst pain I've ever felt, and it was a good thing my arms and legs were strapped down because I just wanted to get the hell out of there. Each push of the material felt like someone had a knife inside my mid-section and was slowly turning it. I finally let out an "Ow" loud enough to catch their attention. It didn't take the nurse long to administer more sedatives once she saw the agony on my face. That's the last part of the procedure that I remember...overall it sucked and I'm glad I won't have to be doing that again anytime soon.

I've been recovering pretty well so far from the procedure...they were able to get 30% more of the radiation directly into the liver which is very good. I've just been very tired and the steroids they have me on not only bring me back to the acne filled days of high school, but make me wired at odd hours of the night. I fell asleep at 7am today and woke up at about 1pm so hopefully I'll be able to figure that out in the next few days. Either way, the nausea hasn't been too bad and I've been able to relax without having anything to worry about. Thanks to my family, my appetite has been pretty good so far and they've taken it upon themselves to make sure I'm eating healthier and doing all we can to help me gain some strength and a few pounds. That's about it for now though...nothing else too exciting going on...one day at a time.

7/3/11 Almost

Where have I been? Honestly, I’m not even sure. It’s been a while since I’ve written anything and I apologize, but the spark was gone…I had nothing to write about. My life had become so mundane that my routine was literally driving me mad. I won’t go through all the details, but there are some things that have happened and are about to happen which are pretty important. The first part of SIRT went just as planned and the recovery for that was not bad at all, but my nagging rib injury came back…this time however, it was not a simple fix with some relaxation. Around the area where the rib was hurting/fractured, there began to form some inflammation as well as something harder. Scans revealed that that there is something there behind all the inflammation that is not letting my bone heal properly which is why I keep reinjuring it doing stupid things. They haven’t said what the growth is, whether it is cancerous or not, in fact, at this point it doesn’t really matter…it just has to go. So the solution has been five treatments with radiation directly through the skin and into the area. That’s what I’ve been doing the last week and the rib hurts like hell right now, but they said it would get worse before it started to feel better. Oh well, at least I know it’s working then. Hopefully that will get resolved quickly because I really want to play some golf and get back on my motorcycle. With all of this going on it seems like I’m stuck in my own world while everyone else is living their lives. A very frustrating feeling indeed. My oncologist also started me on chemo pills called Xeloda which is taken for two weeks and then I get a week off. Truthfully, this Xeloda medicine is our last try before we go to the clinical trials. If the SIRT can keep my liver under control and the Xeloda can keep my lungs and anywhere else under control, then we can buy more time…however that is a big if. It’s another episode of the waiting game. A few months on the Xeloda and then a scan. I know the SIRT will do its job…I need this to work. My last installment of the SIRT procedure is this Wednesday and hopefully the recovery goes smoothly. The main thing is I need to gain weight. I’ve lost too much weight and am now down to about 150 lbs. I just need to get my energy back so I can start doing more activities that will enable me to grow stronger. Unfortunately, moving from my bed to the couch and possibly out to subway for lunch doesn’t live up to how I used to workout.

I’ve been absolutely exhausted and in a lot of pain for the last month. The pain in my rib has come and gone, sometimes not so bad, but sometimes it’s almost unbearable. The doctors told me I’d be very tired, but I had no idea what real fatigue felt like until this summer. I’ll easily sleep more than twelve hours, stay awake for eight, then go right back to sleep. It’s not as fun and relaxing as it sounds. I’m too exhausted to go out and do much of anything. I walk as much as I can around my neighborhood, and even though progress has been slow, I keep at it. I haven’t been myself…I haven’t answered every alert on my phone…some messages and emails and other things have fallen through the cracks and for that I apologize. I’ve needed this month to focus on myself and to try to recover and deal with what has been some of the hardest times since I first became sick in 2009. One more hump in the road to get over this week then I can fully concentrate on recovering. Once August rolls around I’ll be close to my normal self again. I just have to take each day as it comes and hope that tomorrow is better.

5/25/11

This past weekend was the annual Relay for Life of Greater Sussex and it was another great job not only by the volunteers but by everyone who came out to show their support. My team did another amazing job of having someone on the track at all times throughout the night. Unfortunately, I had to go home around midnight because I was extremely exhausted. Walking around and talking to people throughout the entire day was the most activity I had done in a while so it all caught up with me very quickly. Plus, staying awake all night and being outside was not the best environment for me to be in since I have to be ready for surgery on Friday. Either way, the ceremonies of the event were beautiful again and I was a bit surprised I didn’t find them to be as emotional for me personally as they were last year. Maybe it was because last year was my first time participating as someone who was dealing with cancer, but I’m not sure. I’m thinking it’s because I wasn’t really in the mood to have a day of reflection. Things have been difficult lately while I’ve tried to gain as much strength back for my second surgery as I can so maybe I’ve been preoccupied with that. Sunday night had us heading up to Connecticut where my high school had dedicated its senior night for baseball to RELENTLESS Against Cancer and it was a great turnout. It’s always nice to see my friends from home, especially the guys I grew up playing baseball with. The stories we share are endless and they’re all filled with great memories of a life that sometimes doesn’t even feel as if I’m the same person who lived it. I guess I’m not in many ways, but I do know every lesson I’ve learned in what I sometimes refer to as my “previous life” has helped me cope with the difficult reality of my situation.

So this Friday is the big day…I’ll go for the first of the two SIRT procedures and I’m kind of looking forward to it. I’m definitely not looking forward to any of the physical side effects that go along with it, but I’m looking forward to the fact that some sort of treatment will be happening. Some sort of proactive step will be occurring…all of this waiting around has really made me worry a lot. Last time I spoke about how I was surprised I wasn’t recovering as quickly, but I came to a realization over the weekend: I’ve gone almost two months without any sort of treatment, my body is not only dealing with recovering from surgery on a major artery, but it’s also going through the process of getting sick again. While I was busy being “mapped” and scanned and recovering, the disease has had nothing but time to grow. This realization kept me awake for a few nights. How could I be so eager to fight this illness yet here I am waiting around and giving it time to grow. What if something happens and I take a turn for the worst? It’s frustrating trying to tackle those questions in my head. My main oncologist called me the other day and it was strange, but I immediately felt the same relief I did when I first met her as soon as she started talking to me. She explained that I have been on chemo for so long that patients in my boat typically get a “chemo holiday.” I told her I was frustrated because I don’t like to sit around when I know there is something we could be doing to fight back. She immediately put me at ease and said she wanted me to come in for an appointment with her where we will discuss getting back on some form of treatment which I could still receive while going through the SIRT procedure. I hung up the phone and immediately felt as if she had sensed my growing nervousness and had just provided me with a huge hug that instantly made me feel reassured about everything.

It’s good to know there is a plan. Inaction is torture when you know there is so much that needs to be done. So for now we deal with Friday. I’m not nervous for the procedure itself…it’s going to suck, that’s the bottom line so there’s no sense in getting worked up over something I can’t change. I just hope my body can recover enough for the third procedure. I’ll have 6 weeks to do it. They say I’ll be more tired and probably won’t have much of an appetite for two weeks because it will be similar to having radiation poisoning, but hopefully whatever treatment I start will allow me to eat and gain my strength as quickly as possible. I just don’t want my body to give out on me…I don’t think it will, but it’s been through hell and things are only going to become harder over the next few weeks. That’s alright, I’m ready.

5/18/11 - Mapping

Well I had the first portion of the SIRT procedure done last week, and I’m finally feeling well enough today to start writing a bit about it. the entire preparation process for this treatment is very particular and is carefully planned. I started with a CT scan and a PET scan on May 6^th which would be used to take better pictures of the blood vessels that are connected to the ones which will be involved during the treatments and try to see where they lead. The CT scan was business as usual and besides a very long wait time due to one of the machines being down, there really isn’t anything exciting to report from that. The PET scan was a new one for me and I had absolutely no idea what to expect. I was called back into the room where they measured my height and weight. After that, I was put in my own small cubicle with a recliner and was told to wait. The nurse came in with a cart that looked like it was made of lead and had one of those radioactive/nuclear symbols on the side. She pulled a cone shaped container out of it and inside of that was a syringe filled with some sort of isotope. The whole scene reminded me of kryptonite or something, but it was only a small dose of radiation that would show up on the scans. After the injection I had to drink the red contrast dye for an hour, then proceeded to have the scan done…I fell asleep inside the machine so I guess it took a while.

The next part of the process was the mapping procedure which was done last Wednesday on May 11^th. I didn’t really know what to expect, but they said it could take a long time because the doctor would want to be very careful to make sure everything was properly planned so nothing unexpected would happen when they did the actual treatment. I was awake for most of the surgery…all six hours of it. I dozed off only when the nurse gave me a fresh dose of sedatives, but I was usually awake a few minutes later because they took several scans throughout the procedure to make sure they were on the right track. Luckily, my doctor has a good taste in music so the sounds of his ipod filled the surgical suite the entire time. The surgery itself sucked…it would best be described as being put through the gauntlet. The operation was a series of laying there for long hours, putting my arms over my head, putting them down, becoming very cold, do you need more medicine?, you’re doing great…it was all very tiring. To top off a six hour surgery, I was not allowed to move from laying on my back for another four hours since they needed time for the glue holding the incision in my femoral artery to set. This was incredibly annoying and even painful because I pretty much hadn’t moved from laying on my back since early that morning.

We finally got home after what seemed to be a longer than normal ride, but either way I was relieved…mostly because I really needed to throw up. Apparently I got too excited about the crackers and apple juice I was allowed to have and didn’t pace myself slow enough. The recovery has been a bit longer than I expected and I still walk with a bit of a limp. I had low grade fevers for about a week which have finally subsided today. I’m still trying to get my appetite back and I really need to because I’ve probably lost a good amount of weight from everything. It’s a bit scary thinking I have to do this two more times and they’ll be injecting radiation each time which will add to the side effects. I know I’m in great hands with my doctors because they are very precise in what they do, they actually filmed my surgery as a training guide for the World Conference of Oncology. But, I’ll admit I have been a bit worried how my body will handle this surgery two more times, but I guess it’s up to me to prepare myself as much as I can on the days when I’m feeling well. Perhaps I was a little too optimistic and overestimated my body’s ability to recover since it only took a few days to bounce back from treatments. Either way, this is going to be a very difficult and trying summer…so for now I’ll wait and prepare myself because next Friday the storm is coming…

Tomorrow, hopefully the rain holds off, the North Haven community has been so generous in showing their support for me that they are dedicating their senior night for the baseball team to RELENTLESS Against Cancer. Their support has meant so much to me and I’m really hoping the weather holds out because it would be great to see everyone. The game is at 7pm at Bob Demayo Field in North Haven where the old high school used to be.

5/3/11 SIRT

So much has happened since my last post…so many new developments it’s been hard to wrap my head around everything that has gone on. I spent the week worried about what the next step in this whole process would be, but I realized that worrying wasn’t going to help or fix anything. It was time for me to be patient and let things unfold before I tried to worry about things which were way beyond my control. Over the weekend some relatives came over and it was great to see them and have them here in Jersey. I felt great since I haven’t had treatment in a while and for some time it almost felt like things were back to normal. Of course it was back to reality and back to visit another doctor on Monday. We arrived at the main facility at Sloan-Kettering yesterday and we didn’t know what to expect. My Dad had a folder of information about different types of procedures he had questions about and I just knew I had to remain calm and listen carefully to what the doctor would tell me. We waited about an hour to see the doctor, even though my parents were getting antsy I was playing games on my iphone and knew that the long wait probably meant he spends a lot of time with his patients. This assumption was comforting to me because I don’t like doctors who only spend a minute or two with you especially when you are going to be discussing something which could potentially be life-changing.

The office worker called us back and we found our place in a small examination room. The doctor was almost immediately in the room and I instantly felt better about everything because he came in and radiated confidence and a caring nature that was hard to ignore. We got to talking about the possible procedure and he immediately showed us pictures of my CT scans and said he wanted to do the SIRT procedure on me. The schedule of events and description of the procedure are going to be the best I can do…there was a lot of information being thrown my way and here is how I understood it all:

The SIRT procedure is effective in stopping tumor growth for 6-12 months usually and can sometimes kill some of the cancerous tissue. After the 6-12 month period, if things start to grow again, the procedure can be repeated and is usually just as effective. This Friday I am scheduled for another CT scan as well as a PET scan…these scans will allow the doctors to get a better look at my blood vessels and get a better idea of where each vein and artery lead. After these scans, I will then go next Wednesday for a somewhat “dry” run of the procedure. A small incision will be made in my leg near my hip and a tiny catheter will be placed into the main artery. Other catheters and instruments will then be snaked up the artery and close to my liver. This procedure will give the doctor a better look at the exact blood vessels they will need to temporarily block when they give the radioactive dose so they do not harm any of my other organs. The entire procedure will be simulated and a non-radioactive dye will be released to mimic the path of the SIR-spheres. As long as less than 20% of this dye reaches my lungs then we are able to proceed…if more than 20% gets to my lungs, then I am no longer a candidate for SIRT.

Assuming everything goes well with the “mapping” stage I will have the actual procedure done on May 27^th. Since the liver will be receiving radiation, they are only able to treat one side of the organ at a time to reduce the risk of total liver failure and death. After the first dose I will have to wait six weeks and undergo the procedure again in July. So in total I'll have the outpatient procedure three times...hopefully I'll be able to play some golf in-between! From what I’m told it sounds like it will leave me feeling very tired and without much of an appetite for two weeks. They also say I could experience flu-like symptoms with a low grade fever as well as some nausea and vomiting. Sounds fun!

I’m not scared or nervous about receiving this treatment, I just hope like hell it works. I knew that at the beginning of everything there would come a time when I might have to do something like this and I welcome the opportunity as long as it can help move things in the right direction. The next few months are busy between the Relay for Life events here in NJ as well as CT, but the way the schedule works out I will be at both. There’s a chance I won’t be feeling well for the one in Cheshire, but I will be there and participate as much as my body lets me. That is the point of the Relay…cancer is not something that is fought alone; I cannot walk throughout the night on my own. That’s why I will have all of you there…my army will be present and together WE will walk all night and show everyone that no matter how difficult it gets or how I feel, together we can achieve anything because we are RELENTLESS.

4/26/11 - Scan Results

When faced with adversity there comes a defining moment when you are forced to make a decision. Whether to fold or refuse to give in. Adversity can occur in all different forms, but perhaps the worst is when you don’t see it coming and it absolutely blindsides you. This is what happened to me on Friday. I wasn’t feeling well last week because I had come down with a virus and had a low fever, cough, headache, and sore throat for pretty much the whole week. I still went into the city and had my CT scan done as scheduled because I was very curious to see how these new drugs were working. I was very eager to hear the doctor tell me that the scans looked good and things were continuing to move in the right direction. For this reason, I was upset I was sick because I knew I would not be able to go into the city to meet with my doctor. Treatment would definitely be postponed until I felt better because I needed to recover first before my white blood cell count took the hit from chemo. I called my doctor’s office and made it known my main concern was to somehow get the results from my scan and luckily my doctor agreed to call me the next day to let me know how things were looking. I figured this was a good sign because if it were any sort of bad news she would probably want to talk to me in person. I’ll admit I was able to sleep a bit easier Thursday night knowing I was looking at another week of feeling great before having treatment and then most likely receiving some good news in the morning regarding my scan results.

I answered my cell phone around 5pm on Friday and it was a strange number so I knew this was finally the call I had been waiting for all day. My excitement faded, fast. This is not what I was expecting. How could this be? I could barely wrap my head around what I was being told. I took notes on my laptop and none of them seemed to make any sense. My doctor said she would call back again at 7pm when both of my parents were home so we could discuss what just happened. I put the phone down and didn’t know what to do. Was I supposed to cry? Be mad? I sat there and stared into space. I could feel my heart pounding and decided to take a shower to pass the time. As I stood there and the water poured over me I realized I couldn’t cry. I realized it was no time to be sad, days like this were to be expected. I’ve always known something like this would happen, but nothing ever prepares you for it.

My parents got home and I tried to explain what was happening as best I could. They weren’t devastated, but they were upset. This long journey has taken a toll on all of us and it has weighed quite heavily upon all of our shoulders, not just mine. There were some tears, but we quickly pulled it together. I reminded them that whatever comes next is just the next step and that this is a bump in the road. My doctor called back promptly at 7pm and the conversation was a repeat of what I already knew. The chemo that I was receiving for the last three months of avastin and irinotekan did not work. While my colon and lungs remained stable, the tumors that engulf my liver grew, one even doubled in size. While they are still smaller than what they were when I was first diagnosed, this growth is a step in the wrong direction. Even worse, it means we can’t buy any more time on these drugs. The ones I had previously been on bought me almost two years of progress and stability. These haven’t done anything.

So what’s next? There’s a lot that’s up in the air. I’m meeting with a doctor on Monday at Sloan’s main facility to discuss the possibility of doing a procedure called SIRT which involved SIR-Spheres. If it’s determined this type of procedure could benefit me then it is done as an outpatient procedure. A small incision will be made in my leg and a small tube is then inserted into the main artery that feeds my liver. The tube is snaked through the artery and placed very close to the liver where it can direct microscopic beads (spheres) of radioactive matter that can potentially help. Side effects are minimal ranging from flu-like symptoms to nausea, but I most likely wouldn’t be allowed around people since I’d be radioactive. That, of course, is the simple version of what the procedure really is. Other options include another type of chemo which is given in pill form, but my doctor didn’t seem too enthusiastic about it. Another option is to try reintroducing oxaliplatin again. That drug sucked. Since I had such a bad reaction to it last time, my doctor said we’d have to turn treatment into a two or three day process and I’d have to be heavily medicated throughout. I’ll obviously do what I have to do, but I’d rather not go that route. Either way, none of these are cures and the list is starting to dwindle which is a very real and scary thing. I’ve begun the search of alternative treatments and have found one doctor that comes highly recommended by some people I trust. Right now my army is in intelligence mode, everyone is scouring the internet for information on procedures that could help, even if it’s a long shot. We’re not desperate yet, but if something could help then why the hell not?

So we’ll see what happens. I’m meeting with this doctor on May 2^nd and hopefully I’ll get some answers. Hopefully I’ll get some good news. Either way, this is adversity. This was totally unexpected. I could have felt sorry for myself. I couldn’t cry in the shower because my decision was already made…I am faced with a problem, there is a solution somewhere and it will present itself when the time is right. For now I just have to remind myself that no matter what happens next week, this battle is very far from over.

4/12/11

This past weekend I was lucky enough to be asked to speak at two Relay for Life events. I learned a very valuable lesson though about agreeing to things very far in advance: I need to realize that despite how my mind feels about doing these events, I must also remember my body might not be as enthusiastic about it two days after treatment. Well you live you learn, right? I definitely learned this weekend. I don’t mind speaking in public and I like to think I put together some coherent thoughts once in a while and the audience could take something away from it. I didn’t feel that great after treatment on Thursday and I promptly went to bed right when I got home. Friday never really happened since I didn’t venture out of my bed until after 5pm. I wasn’t feeling that well and I knew that if I stood up to walk around I’d immediately have to run to the bathroom to puke. Only problem was I had no interest in running anywhere and I couldn’t stand the thought of what my mom’s face would look like if I told her I threw up on the new carpet. So the solution was to remain in bed. Usually I’d begin feeling a lot better on Saturdays so I kept my fingers crossed because I knew it was too late to cancel on the Relays. Saturday came around and I was really hating myself for saying I’d be feeling well enough to speak later that night. I didn’t eat much of anything except for some toast and stayed on the couch watching golf until I absolutely needed to get ready. After a car ride of constant mental reminders to focus on objects in the distance and having my finger on the window control just in case, we made it to Fairleigh Dickinson University in Madison (Hey I go there!). Yes, I was speaking at my school and I wasn’t too sure how I felt about it, but knew it was something I needed to do. I transferred up here because of my illness and it follows and affects me in every facet of my life, school has been somewhere I can blend in and pretend to be normal if only for a few hours a day. My professors are aware I have a medical condition and I don’t go into any detail unless I miss some classes and feel I owe an explanation. Either way we were there and it was showtime. I wasn’t schedule to speak for a few minutes so I wandered around to a few of the buildings trying to find a vending machine that was working because I figured some carbonation might help settle my stomach. I got my drink and came back to declare to my parents that “I would consider this a moral victory if I don’t puke on the stage.” My dad laughed and my mom shook her head but they both knew I was serious. I spoke for only a minute to the crowd of about 120 because I didn’t want to bore them and we were in a gym so the terrible acoustics meant I could only hear my own voice which got very annoying. I was able to get my point across and had I been feeling a little better I might have made more sense. We made our way to the next Relay at Blair Academy, a small boarding school about 30 minutes from my house. The students there raised over $30k in a short period of time and the energy and enthusiasm they brought to the event was truly amazing. I spoke a little longer because I was starting to feel a little better, but it was still an abbreviated version of my usual spiel. I can only hope they were able to take something away from what I said. Anything at all and I’d have done my job. It was an inspiring evening for me because it was great to see young people getting involved in such a great cause. For me, it’s not about trying to tell these young people a story that’s supposed to make them feel sad, it’s a story that’s supposed to make them realize that anything can happen. I want them to realize that the only way your generation can become the one that cures cancer is to be proactive in the fight.

But thank you to those Relays for having me and I’d love to come back and speak again hopefully on a day I’m feeling better so I can do a better job. I have a scan next Tuesday and we’ll get the results on Thursday so fingers crossed that this stuff is doing its job.

4/1/11

The ride was long, about ten hours. I left during a slight drizzle in Charlotte and ended up in Jersey when it was dark outside. I left my key on the coffee table for my roommate. My room looked as if someone had lived there, but the closet and drawers were empty, only the furniture remained. I remembered only a few months back when we moved in and I didn’t have anything except for an air mattress because getting the big screen tv was more of a priority than buying a bed. It didn’t seem real. This wasn’t what I had planned. I wanted to cry but I had nothing left. I was exhausted from barely sleeping the last few nights and the rollercoaster had left me physically and emotionally drained. I’d made the drive back north plenty of times but none under circumstances like these. I made those trips knowing I’d be back pretty soon, but this one was made with so much uncertainty. I usually drive and listen to loud music to sing along to on long trips, but I kept it relatively quiet in hopes of slowing my thoughts down. I don’t remember any details from the drive because I suppose I was in a daze and just wanted to know what would happen next. It wasn’t the type of anticipation I was used to. Instead of hoping that things would get better and turn out to be alright in the next few days/weeks/months, the anticipation was blind. I knew something lay ahead of me but what? I’d passed exit 52 so many times while driving through New Jersey on my way up to Connecticut that I never took the time to read the sign. Turns out I was exiting into a town called Butler and onto Route 23. New Jersey didn’t make sense to me because I needed to take a left turn into the apartment complex my parents were staying at until we would be able to move into our new place, but I wasn’t allowed to. They make you go around a jug-handle on the right so I could cross the street and get to where I needed to go. Whatever, I wasn’t going to analyze the practicality of the roads tonight. I just wanted to sleep. I just wanted to lay down and let the last week catch up with me. I wanted it to hit me and I wanted to finally relax because things were about to change and I was finally home with my parents. It wasn’t the home I had grown up in for twenty years. We traded that for a crammed studio apartment with outdated everything. That didn’t matter though, I was there with Mom and Dad and I could finally rest. I only remember one song from the drive to New Jersey…O.A.R. told me that “Each day is a gift”. I’d taken a lot of things for granted up until that point in my life. Things always seemed to have a way of working out in my favor, maybe this would too…this can’t be happening to me…maybe this wasn’t really happening…maybe I’d wake up in my apartment and everything would be in its place…maybe it was all some sort of joke…after all, it was April 1, 2009.

Happy New Year!

Vacation in Florida was great. It was bittersweet. The whole week offered an escape from everything that is my life and I was able to enjoy some unforgettable memories with great friends. I know I’ll never be able to fully escape everything here, but just relaxing in the sunshine with nothing to do but play cards and listen to the sounds of people as they played in the pool next to us. I guess that’s why it’s been so hard coming back. Vacation offered me an escape and a way to lie to myself that the last two years have been just a dream. I was rudely reminded that they were in fact reality when we arrived back in Jersey and the temperature was in the 20’s with snow on the way. Awesome. This week marks the two year anniversary since all of this started and it’s hard to comprehend and put everything that’s happened in its place. But here we are…here I am. I was so sick in 2009 that I wasn’t even sure I was going to live this long. i’ve been through hell and I’m sure there is more to come, but as long as the sun rises tomorrow, I’ll be here ready to fight.

On April 1, 2009 I was driving to New Jersey from Carolina with my car packed with as much of my stuff as it could fit, and my life had been turned upside down. I had no idea I was in for a battle that could last this long. I honestly had myself fooled into thinking that I could get through this in a year and resume my life down in Charlotte. How ridiculous of me. I guess I was just being optimistic, but I was just lying to myself. Truth is I was scared and I would think and act in a confident way to make sure I didn’t worry anyone around me. I didn’t want to show them how scared I was or how unsure I was of what lay ahead of me.

I’m a bit scattered tonight, as I have been pretty much since vacation…I’m not sure what’s going on with me, I’ve been constantly tired and have little interest in anything other than the NCAA tournament. This last treatment hit me a bit harder than usual and I was actually throwing up for two days which is always fun. I can only hope that this isn’t a sign of things to come because I was actually getting used to feeling halfway decent after chemo. Oh well, it’s not supposed to be easy. So to end this clouded thought of mine I think I’ll do it with a sort of resolution. I always hate New Years and how the gym is always crowded with the “Heroes” who make it their resolution to start working out. Yeah that’s great, but they always last about a month and then it dies down. For me, being here another year and making it to another April 1^st is kind of like New Years for me. So I guess it’s time for a resolution…my goal this year is to tell my story. I know you think I have been telling it through this blog and everything, but this is just sort of my day to day thoughts and a way to vent. I want to write something that is completely honest, something that will give everyone a look at what really goes on inside my head (besides the hamster running on its wheel). I’ve always had an easy time writing, but this is going to be tough because I have to be more honest with myself than I have ever been. I have to really take a look at what I’m really all about. On April 1, 2012 I will have my story ready…

3/8/11

It's funny, but when I go longer than two weeks without treatment I sometimes forget about everything that's going on. Even if it's only for a minute, forgetting about all of this offers a nice break from reality. After my whole broken rib and flu incident, my treatment schedule got screwed up and I went about three weeks without having to go to the doctor which is an incredibly long time. I ended up getting back into the swing of things last Thursday and having my regular treatment. It's hard to believe, but by the time it hits mid-April, I'll have been undergoing chemotherapy for two full years. Two years...even I can't believe it. By the time the summer rolls around I'll have had fifty treatments...fifty times they've pumped me full of drugs...fifty times I've been hooked up to those machines...fifty times I've come home from the city knowing that I'll be feeling like shit...fifty times I've prayed that this would be the last time...
I look back and think about all of the crazy things that have happened throughout all of this and can't believe this is my life. It's been amazing to see how my body has broken down and then repaired itself, but it also makes me nervous knowing the hell it has been put through. While my mind remains strong and my determination has not wavered, I can't help but wonder how much more my body can take. I never thought my treatments or illness would last this long. I had no idea that there were people like me whose only hope is to endure the treatments for as long as we can until something that will cure us comes along. Sure, there are days I am tired, and there are days when I don't feel like myself, but just knowing that tomorrow could possibly be better makes things easier.
I'd never compare what I'm going through to a war, because there is no way I could possibly grasp the hell that soldiers must endure in battle. There is one song, however, that was written to describe the spirit of the warrior. "War Song" by O.A.R. has been one of my favorite songs since I discovered it, but since my diagnosis, it has taken on a new meaning with me. Here are the lyrics:
"War Song"

Oh my God, tell me this won't last forever
Tell me that I'm not alone
Tell me this will come together now

Packed my things up just the other day
Said my goodbyes to all these things I've saved
Out in the driveway, we laugh under the moon
Among my friends for now, but I'll be leaving soon

Many days from now, I'm sure
I'll be back among your graces
And with you I won't pretend
No, not at all

Crack the morning
Up and running quick
No sleep again last night but that's the way it is
Out in the open under broken skies
I feel every footstep
I see everybody's eyes
Oh and this is summer in another world
Far from the driveway and my baby girl
Soon comes the winter
With it quiet nights
And darker days and darker fights

But many days from now, I'm sure
I'll be back among your faces
And with you I won't pretend
No, not at all

Oh the fever is burning
Over at midnight but never like this
Hot under their fire
The stars are all falling but never like this
I hope you never see this

Wait, wait for my love
Don't forget me, never let me go
If you wait, wait for my love
I'll remember, never let you go
Until I'm fine, fine, fine
Until I'm fine, fine, fine

To be back in my room
I have the same dream every night
Just me among my things
No one else is there
There's no one left to fight
Just me among my things

Many nights from now, I know
I'll be back among your graces
Until then I'll just pretend
That I'm not cold

Oh my God, tell me this won't last forever
Tell me that I'm not alone
Tell me this will come together
Oh my God, you know

Wait, wait for my love
Don't forget me, never let me down
And just wait, wait for my love
I'll remember, every one of you
Just wait, wait for my love
Until I'm fine, fine, fine
Until I'm fine, fine, fine
I'll be fine, fine, fine
I'll be fine, fine, fine


When I was diagnosed, I had to put my life on hold, pack my things, say goodbye to my friends, and travel to my new home without knowing what the future would hold. I don't know how or when all of this will end, but I'll be fine, fine, fine...


Check out my interview with Dr. Ellen Matloff from Yale's Genetic Counseling Center on her program "Cancer Bytes"

Also, a little bit about our donation...

....And we're back

Sorry for the two weeks I took off of writing...things have been quite chaotic for me the last two weeks and I'm not finally able to have a few minutes to myself to get all of my thoughts caught up with everything. In a nutshell my last two weeks have been comprised of one case of the flu, two emergency room visits, one treatment, and one broken bone. I wasn't joking when I said things have been crazy...
So I ended up getting a flu-like virus because I pretty much have that sort of luck lately and it was not fun at all. The worst part about getting sick is that I have to worry about how I'll be able to recover. Undergoing chemo means that my immune system is working overtime constantly to try to regenerate itself after taking the punch each treatment gives. Of course there is always that one worry that tops everything...what if this is the sickness that I can't come back from? That's very scary to think about because the flu can easy turn into pneumonia which could easily turn into organ failure and death. For many cancer patients this is how their battles end. Our bodies take a beating from the treatments and catching a cold or the flu could be the tipping point for any of us no matter how healthy we may seem. So it's easy to understand why I'd have to go into the city to the Urgent Care center at Sloan. I had a fever of about 102.5 that lasted a few days and I knew my doctor would yell at me if I didn't call to report it to her. That of course would mean a field trip into the city to visit Sloan's version of an emergency room. It's meant for current patients only and some are in much worse shape than others. It's always a long wait, but as I sat there in the lobby I got to observe many different people. Some seemed to have similar ailments as mine, some didn't look like they were doing too well, one woman was visiting her husband and tripped and broke her ankle, but there were also those who might not make it out of that hospital this time. It's always a sobering trip to the main hospital because I am not always exposed to the true perils of cancer at the outpatient facility where I receive my treatments. Here is where some people come in with what starts off as a simple case of the flu but never make it out because they are outmatched this time by the illness. I had some bloodwork done and other cultures to ensure I didn't have any sort of infection. I was also sent for a chest x-ray to make sure there were no signs of pneumonia (the x-ray tech was gorgeous so this helped cheer me up even though I felt like crap). All in all my trip to Urgent Care wasn't very eventful and I began feeling better the very next day thanks to some miracle flu drugs they gave me. Little did I know things were just starting to get exciting...
My flu-like virus left me with a lingering cough that was simply annoying more than anything. It was all annoying until I woke up during the night and twisted my body awkwardly only to let out a very violent series of coughs. I took a swig of gatorade and rolled over. The next day I was a little sore right underneath my left pectoral muscle and figured that I might have pulled it a bit during my awkward twisting motion the previous night. I continued on in my day and the pain started to grow worse and worse. The next day I was a bit cranky because I had not slept well thanks to that same pain and to make matters worse I had to go to class. I couldn't sit still in class from the pain and I almost had to leave my second one because the pain was so intense that every breath I took made me wince in agony. I had a few errands I needed to run after school, but I decided to put them off and flew home to seek the relief of some pain killers. I felt a little better once the medicine kicked in and I was able to make up for some of the sleep I lost. When I awoke, however, I was reminded that something was definitely wrong...The worst pain I've ever felt in my life was from my knee surgery in high school where the doctors removed much of the cartilage in my right knee and inserted plastic anchors. When those pain meds wore off I was in absolute agony. When i awoke from the nap I turned to get out of bed and felt immediately as if someone had stabbed me and was twisting the rusty blade in the wound. I let out a not so nice series of French words (had no idea I knew any) and took a second to get myself oriented for another attempt. I gathered my strength and forced myself out of bed even though I almost passed out from how painful it was. I really didn't feel like passing out while no one else was home because I could only imagine how shocking that sight would be for my parents to find me face down on the floor. I shuffled my way down the stairs and sat on the couch while the minutes until my dad got home slowly passed by. When he came in he knew I was not joking around because every breath I took and every small movement resulted in pain so bad I was close to tears. I assured him I was not having a heart attack and we decided it was still best to head to the local emergency room to get it checked out. Luckily we picked a good time and date when no one else was getting hurt so there wasn't a wait when we got to the hospital. I waited for what seemed like hours, but in reality it turned out to be about 35 minutes for the x-ray tech to be ready for me. They took yet another chest x-ray and finally the oxycodone I took at home was starting to kick in. This made moving and breathing much easier...of course the feeling of being on drugs was welcomed at this point after I spent the entire day angry that I wouldn't be able to begin working out and getting in shape for my spring break trip to Florida in March. The doctor saw nothing wrong on the x-ray and simply sent me home telling me to take the pain meds as I needed. I knew there was no way nothing was broken so I got my clothes back on and started walking out of the hospital before the nurses even discharged me. I was not a happy camper to say the least because I knew that with no conclusions being reached locally, my doctor would want me to head into the city for more tests at Urgent Care. I was not in the mood for this so we decided to go back home and regulate the pain until tomorrow. The night and following day were agonizing when the pain meds wore off and I hadn't moved from my position on the couch. That night when my parents came home they said I had a message from the emergency room we were at last night and they wanted me to call back. I talked to the radiologist who had the chance to take a closer look at my x-ray that morning and indeed it showed that one of my ribs was broken. I KNEW IT WAS THE WHOLE TIME!!!!! It was nice having some sort of confirmation because there is no way a person should be in agonizing pain like I was in for absolutely no reason. Plus, it's nice to know that whatever was ailing me was not really related to my underlying condition. I rested the next few days because there isn't anything you can do for a broken rib except try not to sneeze or cough because they both hurt like hell. Go figure, I've played sports my whole life and have never broken a bone, but I coughed and broke my damn rib. One day I'm going to look back on all of this and laugh...for now I will simply try not to cough or sneeze too hard so I can be fully healthy to start playing golf again in the spring.

Swim

Not a whole lot going on here lately...this whole school thing is getting in the way of developing profound thoughts then blogging about them. But no, to say that nothing has gone on lately would be a lie. Last weekend I had the amazing opportunity to speak at a health day at a synagogue as well as a Relay for Life kickoff event with over 100 people in attendance. Going into that day I was very nervous because giving a presentation in business class is one thing, but talking about something that could get pretty personal and sharing feelings/emotions is sort of scary for me. Tell me to give the class a presentation on a company and it's no problem, as long as I know the information I'll be fine because I have a knack for talking in circles while I'm searching for what I'm really trying to get across in my head. It's always easier to write about what's going on with this illness than it is to actually sit down and talk about it. Strange, i know, but hey I'm human and some things do scare me...like talking about very personal stuff....or riding horses....but we'll leave the whole horse thing for another time. The Relay for Life is an amazing event that the American Cancer Society holds in thousands of communities across the globe over the course of the summer and it raises a ton of money for our goal of eliminating cancer. I went to one way back in high school when I just thought it would be a fun event to attend with some friends. Little did I know the impact it would have on my life or how much the event would eventually mean to me.

I don't remember all of the details from that Relay, but I do remember that I made a luminaria (a paper bag filled with sand and a candle with a person's name who has or is currently battling cancer) for my grandfather who had died of colon cancer when he was just 39. I was named after him. It was a strange feeling writing the name we share on that luminaria because I thought I knew just how serious it was. Little did I know that a few years later I'd be walking at a Relay for Life in New Jersey and see several bags alongside the path with my name on it again, although this time those bags were meant for me. The Relay begins with a survivor lap that honors those who are currently battling cancer as well as those who have given the disease hell and have come out victorious. My mother and aunt walked in that lap and I just remember feeling so thankful to see so many people taking that lap and smiling because they had beaten the odds and are still here to make an impact on all of our lives. Why didn't I walk in the lap if it is meant for those who are still dealing with cancer? I'm just not ready to. I tell people that I am in the process of surviving...I want to watch that lap because I want it to be a goal. I will someday walk in that lap once my battle is over. I learned as an athlete that the game is never over until that last out is recorded, and I'm not going to celebrate an early victory just yet. I will eventually when this weight is lifted, but until then, I will watch my mom and aunt take that lap and eventually take my place beside them when the time is right. As night falls, the most powerful and emotional part of the Relay takes place...the silent lap. This lap is in memory of those who have lost their battles and in their memories, we walk quietly with candles as the luminaria glow in the darkness. Even though I had over 50 friends and family there I walked alone. I reflected on the rollercoaster of a year that had passed since my diagnosis when my mom caught up with me. "Well this wasn't part of the plan" she said to me as she fought back the tears. No it wasn't...but this was the road we were now on and I couldn't respond...I gave her a hug and tried not to cry because I knew that I needed to keep it together not just for myself, but for everyone there. The night went on and we continued our commitment of having someone from our team walking at all hours. A terrible storm came and dumped a ton of rain on the Relay...some teams huddled in their tents, some packed up and called it a night, but not ours. We made a commitment and there was no way in hell we would pack it in. We are supposed to be RELENTLESS and a little rain wasn't going to stop us. I knew I had the support of my friends and family, but I didn't realize they shared the will and determination as they refused to stop walking no matter how bad the storm got. My legs started to get tired and my knees were killing me so I was taking breaks in walking more frequently. When the rain was at its worst you could count the number of people walking on your fingers. Among them, with his hands in his pockets and his body drenched, was my best friend Ron. Every time he passed by our tent we offered him an umbrella or a towel or to even take his place. Every time he passed he refused and continued to walk when a lot of people had given up. If I were counting, I'd say that him and my father walked the most out of anyone at that Relay...and they did it for me. When I was tired and needed a break they were there to pick up the slack. That's how I get through each day...I know that the physical burden is mine and mine alone, but I have an entire army behind me to pick up the slack when I need them.

I've said it a million times, but there are many quotes and songs out there that have helped get me through the difficult days. There has been one song that I discovered along the way that perfectly describes how it is to deal with being sick. There are good days and bad days, but you must always stay positive and hold on until tomorrow because it's one day closer to all of this being over. There are many times throughout this ordeal when things have become overwhelming or it's hard to find any sort of positive thoughts. I could have packed it in numerous times and called it quits, but I had come so far and I had so many people believing in me that I couldn't let that happen. I am fighting for my life here which is the most important fight I'll ever take part in...how could I just give up? The decision to turn this whole thing into something positive took a lot of time and wasn't possible without facing those terrible days when I didn't want to get out of bed because I honestly didn't see any point. I realized that my life would never be normal again and it would never be close to the path I had always envisioned for myself, but why is that such a bad thing? My life could still be whatever I wanted and sitting around feeling sorry for myself was not going to improve anything. I didn't realize how lucky I was because I found the strength to get out of that hospital bed when I could barely make it a few feet without having to stop and catch my breath. People all around me in that hospital never made it out of there...I did because there is so much more I have to contribute and accomplish in this life. So here it is....the song that has probably gotten the most use in my whole library. It's another Jack's Mannequin song and it's called "Swim"...

You've gotta swim
Swim for your life
Swim for the music
That saves you
When you're not so sure you'll survive
You gotta swim
And swim when it hurts
The whole world is watching
You haven't come this far
To fall off the earth
The currents will pull you
Away from your love
Just keep your head above

I found a tidal wave
Begging to tear down the dawn
Memories like bullets
They fired at me from a gun
A crack in the armor
I swim to brighter days
Despite the absence of sun
Choking on salt water
I'm not giving in
I swim

You gotta swim
Through nights that won't end
Swim for your families
Your lovers your sisters
And brothers and friends
Yeah you've gotta swim
Through wars without cause
Swim for the lost politicians
Who don't see their greed as a flaw

The currents will pull us
Away from our love
Just keep your head above

I found a tidal wave
Begging to tear down the dawn
Memories like bullets
They fired at me from a gun
Cracking me open now
I swim for brighter days
Despite the absence of sun
Choking on salt water
I'm not giving in
Well I'm not giving in
I swim

You gotta swim
Swim in the dark
There's no shame in drifting
Feel the tide shifting and wait for the spark
Yeah you've gotta swim
Don't let yourself sink
Just find the horizon
I promise you it's not as far as you think
The currents will drag us away from our love
Just keep your head above
Just keep your head above
Swim
Just keep your head above
Swim, swim
Just keep your head above
Swim

1/25/11 "Do Your Worst, For I Will Do Mine"

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.

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.

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.

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.