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.