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.