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.