10/31/2010

I wrote this earlier tonight as a part of the private journal I've been keeping lately. I'm still undecided about what I should choose to share with everyone and what I want to keep to myself, but I figured I'd give this one a try. It's much more personal than everything else so hopefully it goes over well...

And just like that this whole thing became real. It hit me like a ton of bricks when I came across her facebook page. Everyone wrote their condolences and I had no idea what they meant until I came across the post that asked what color her wings were…she was gone. I remember it like it was yesterday. I was sitting there in the waiting room, nervous as all hell, but there were angels in the room that day. I never thought I believed in angels until I was sitting there wondering what was going to happen to me. It was my first appointment at Sloan Kettering and all I can remember feeling was that I shouldn’t have to be there, I was too young to be there. I looked around the room and everyone was old and looked to be in rough shape. Who was I kidding? I was in pretty rough shape too. I hadn’t had a full night of sleep in about a week and was in so much pain it was hard to sit still in one position for any amount of time. I offered a word or two as my parents filled out the paperwork with so many questions I couldn’t even keep track. Truthfully I wasn’t really concerned. My mind was in a million different places, all of which were somewhere other than here. A gentleman came up to us as we huddled around the paperwork and said, “Excuse me, but are you a cancer patient?” Cancer patient?!? And that’s when it hit me. That’s what I was. I was no longer the normal 21 year old college kid with nothing too much to worry about other than how much spare money I had for beer this weekend or which girls paid noticeably more attention to me lately. But no, here I was sitting in the waiting room of a hospital for people with cancer. I hesitated for a moment and then replied that I was a patient. This was the hardest admission of my life. I’ve been caught in lies and have been forced to admit when I was wrong, but admitting that I was a cancer patient was the most difficult thing I’ve ever had to tell anyone. He handed me a bracelet which read ‘I am Strong’ and looked me dead in the eye and told me that I was in the best hospital in the world. He was a survivor of a radical surgery in which the doctors removed most of his vital organs and then pieced him back together. He saw how worried I was sitting there in that room and said he just knew he had to come over and talk to me. I wanted to break down and cry right then and there in front of everyone, but I was already being stared at by since I was so young and in such bad condition that I couldn’t give in to my emotions and show weakness on only my first day. I saw him once more after that while I was waiting to have a colonoscopy done at the main hospital building. He was standing in the hallway and shook my hand and told me that there was nothing to worry about because I would be taken care of. My second angel came in the form of a small blonde who I had stolen the title of ‘Youngest Patient’ from. She knew just how to keep me calm because she had been in the same situation as me a few years earlier. She even handed me a Victoria’s Secret magazine during one of my future treatments because she knew how much the chemo sucked, so she thought she’d provide me with some enjoyment. She always knew how to put a smile on my face long before I realized that it was ok to smile or laugh in a place that was in the most serious business of all. I wasn’t too sure angels ever existed, but I have always believed in signs from God or whatever it is that is out there. Maybe there are just strange coincidences…but I have experienced things that sometimes show evidence that something else is going on. These people knew that they needed to come and speak to my family and I. They were compelled to share their stories as something for us to use as hope. I’m not sure I would have made it through those first few days with the strength that I did had I not met those very special individuals. I am forever grateful I did meet them though, and I know that I’ll see them again, hopefully not for a very long time, and be able to thank them for having the courage to come and speak to the new kid who was sick and terrified of the journey that lay ahead of him. That is why I am doing all of this…who knows, maybe someday I’ll be someone’s angel…

Hmm...

It's going to sound very strange, but perhaps the most frustrating part about this whole thing is the fact that I feel fine most of the time. Weird, I know. Who would want to feel crappy all the time? I'm not saying that I wish I were sicker, because believe me, I am incredibly thankful for the fact that I can pretty much go about living a normal life and pursuing everything I wish because I have responded so well to treatment thus far. I just get nervous sometimes because when things first started, I was so sick that it was very easy to notice improvements in my condition. Now though, I have no clue what the hell is going on inside my body. Now I simply have to wait and see what the CT scan results will say every few months. There wasn't as much worry when I could tell I was improving because I would be gaining weight or having more energy to actually make it through an entire walk around my small neighborhood. I remember when I was in the hospital, I had trouble simply walking up and down the hallway. That's when it was easy to stay motivated. That's when every extra step I took during those times when I wasn't sure I could keep going, those are the steps that would mark my improvement. Now though, I feel great which is pretty stupid to complain about. Now I worry. Now it scares me so much to even think about receiving bad news that I don't think I slept the night before my meeting with the doctor when she revealed how things were looking. It's a relief when things are going great, but that one time when things changed a bit towards the negative that it was such a crushing blow. Not as difficult as it was when hearing the original diagnosis, but pretty damn close. If things aren't going so well there's no one to blame. I can't blame myself because there is nothing I could do to improve my odds. I can't run one extra mile on the treadmill. I can't study harder. I can't do any sort of work that will help. It's incredibly frustrating. The only thing I can do is put my faith in modern medicine and do my part in fundraising towards an eventual cure. The day will come when all a patient will have to do is take a pill or have a few infusions to eliminate the cancer. All I can do is wait and stay positive until that day comes. All I can do is continue to live each day to the fullest and continue without any regrets. To sit around and feel sorry for myself would be the same as giving up. People give me credit, but I don't always understand it. I guess I just find it hard to believe that anyone would ever choose to accept defeat when you're in the fight for your life. I have so much left to accomplish, so much more I can do, and I see no reason why I won't.

October 2010

Wow, it's been a while since I've updated this! When I last left off, I was still receiving the basic treatment and things were going well. One of my CT scans showed signs of the growths on my lungs starting to show up a little more noticeably. This result prompted my doctor to elect to put me back onto the oxaliplatin chemotherapy. Hearing that things weren't still going as planned was such a shock. Not quite as shocking as my initial diagnosis, but it blindsided me. I was a bit shaken because I knew that the next few months weren't going to be enjoyable since I knew what to expect from my previous experience with this treatment. The side effects would make me incredibly tired, nauseous, and sensitive to cold. The only problem with this treatment was that it is very risky to re-introduce it back into your body. My body was already trained to recognize that this stuff was going to wreak havoc on my system and really throw me for a loop. The first treatment didn't go too bad, it was just difficult getting used to the idea that I would have to be hooked up to the IV for two hours at the hospital instead of the thirty minute treatment I was used to. The next few treatments didn't go as well though. There is a high risk of having reactions to the treatment when it is brought back into the regiment, sometimes it could even be fatal. On my second treatment, I awoke about halfway through the process with incredibly itchy palms, a rash on my face and chest, and profuse sweating. I felt fine, but apparently that's when there is a very large risk that your throat will close and you could stop breathing. I don't always take risks like that too seriously, but once there were five nurses and one doctor all in my room taking measurements and hooking me up to machines to take my vitals, I realized just how serious this was. It reminded me of the scenes you'll see on tv in the medical shows when a patient is "coding." It was a pretty scary incident, but I was given some incredibly powerful sedatives similar to benadryl and don't really remember the rest of that night or the day after. My next treatment was to be drawn out to take four hours instead of two. The reasoning behind this was that maybe a slower infusion would mean that my body would not react quite so harshly. Well, that didn't help either. I reacted pretty much the same way and was treated to the same dose of sedatives to help curb the effects. The ensuing treatments pretty much went the same way and I simply decided I would have to suck it up and do whatever the doctor deemed best. The oxaliplatin treatments lasted about five times when the doctor finally decided to go back to the old routine of the 5FU and leukavorin which was such a relief. That's about where I am now with the treatments, but my next posts will get into the formation of the foundation as well as some new genetics testing which is now available.