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.