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.