I have decided that my word of the month will be attack. One of the definitions for this word is to set upon in a forceful, violent, hostile, or aggressive way, with or without a weapon; begin fighting with. This is my attitude toward cancer. I'm going to attack this with every weapon at my disposal. Medical, mental, nutritional, I'm going after this motherfucker. Things need to change up a bit, need to take a different approach. I beileve that if I am so exhausted from working out, my body won't have anything left for the cancer cells. All of my nutrients and energy will go toward making me stronger, leaving nothing to fuel the cancer cells. Starve those bastards, basically.
Another defitition is to set about (a task) or go to work on (a thing) vigorously. So I am attacking my training and my movie. These two things take up the majority of my day. Not only does this keep me focused, it keeps my mind off of more negative things. If I'm too busy trying to get faster on the bike or improve my running endurance, I don't have time to dwell on melanoma. And worrying about getting enough good footage and music rights is far more productive than worrying about how much the IL2 treatment is going to suck. I even have a plan of what to specifically attack when I'm stuck in the hspital in a few weeks.
S right now I have gone into attack mode. It mght be time to start listenng to those Rollins Band albums again, get into te correct mindset. It's time to end the defensive mindset, and begin to attack.
Wednesday, May 9, 2007
Monday, May 7, 2007
Update
It’s been almost a week since I received the news that I still haven’t yet delivered the knockout punch to my melanoma. So far, I haven’t received any further news from my doctor about the next step to take, although I’m fairly certain that I will hear something tomorrow. A lot of people have been wondering how I have been handling things in the days since hearing the bad news.
Mainly, I have been working out. Every day I have done two of the following: swam, ran, or gone for a bike ride. (The exception being today- Mondays are rest days) I have actually reached the point where when I run I no longer suffer from shin splints after a mile or so. The Harriman Triathlon is less than two weeks from today, and I have every intention of being on the start line. I also plan on doing the full 100 mile route on June 2nd’s Ride to Montauk.
Mentally, I am doing okay. Probably as good or better than could be expected for someone in my situation. I haven’t had a Brian Wilson meltdown, becoming a bedridden hermit or anything like that. A few minor panic attacks here and there, but half of those are not even related to the cancer and probably would have happened anyway.
I’ve been working on my documentary, spending hours in front of the computer editing. It’s looking pretty good, although I do tend to swear at the monitor. A lot. The more high tech you go, the more things can potentially (and will actually) go wrong.
I wish I had more information to tell you all, but as of today I don’t know a hell of a lot more than I knew last week. I’ll keep you updated, though, as soon as more information becomes available to me.
Mainly, I have been working out. Every day I have done two of the following: swam, ran, or gone for a bike ride. (The exception being today- Mondays are rest days) I have actually reached the point where when I run I no longer suffer from shin splints after a mile or so. The Harriman Triathlon is less than two weeks from today, and I have every intention of being on the start line. I also plan on doing the full 100 mile route on June 2nd’s Ride to Montauk.
Mentally, I am doing okay. Probably as good or better than could be expected for someone in my situation. I haven’t had a Brian Wilson meltdown, becoming a bedridden hermit or anything like that. A few minor panic attacks here and there, but half of those are not even related to the cancer and probably would have happened anyway.
I’ve been working on my documentary, spending hours in front of the computer editing. It’s looking pretty good, although I do tend to swear at the monitor. A lot. The more high tech you go, the more things can potentially (and will actually) go wrong.
I wish I had more information to tell you all, but as of today I don’t know a hell of a lot more than I knew last week. I’ll keep you updated, though, as soon as more information becomes available to me.
Sunday, May 6, 2007
Cold air masses
The other day my mother remarked that we don't seem to have much of a spring season anymore. It almost seems like we go from winter to summer. These last few days have really felt that way. Even though it has been sunny, it sure as hell has not been warm. A lot of cold winds have been blowing around, and I cn't figure out where all of this cold air is coming from.
Back when I was in colege at SUNY Fredonia, campus was about two miles from Lake Erie. I would often go for long bike rides, particularly during finals wek when I probably should have been studying. But that's besides the point. I would sometimes ride south into Chatauqua County, and when I would get into the hills it would be a warm, spring day. But if I decided to ride home on Route 5, which basically followed the Lake Erie shoreline, there would be a very cold breeze coming off of the lake. Obviously a huge mass of water that was maybe 40 degrees F would cool the air traveling across its surface.
But here in the landlocked Catskills, there is no lake of ice water cooling the air. Just bitter winds that seem to blow right through your skin chilling you to the bones. And I really wish that they would go away. As much as I love to ski, I have hung up my sticks for the time being, and want to see green trees and wear shorts comfortably. It's May, I shouldn't be freezing or having to turn up the heat.
Back when I was in colege at SUNY Fredonia, campus was about two miles from Lake Erie. I would often go for long bike rides, particularly during finals wek when I probably should have been studying. But that's besides the point. I would sometimes ride south into Chatauqua County, and when I would get into the hills it would be a warm, spring day. But if I decided to ride home on Route 5, which basically followed the Lake Erie shoreline, there would be a very cold breeze coming off of the lake. Obviously a huge mass of water that was maybe 40 degrees F would cool the air traveling across its surface.
But here in the landlocked Catskills, there is no lake of ice water cooling the air. Just bitter winds that seem to blow right through your skin chilling you to the bones. And I really wish that they would go away. As much as I love to ski, I have hung up my sticks for the time being, and want to see green trees and wear shorts comfortably. It's May, I shouldn't be freezing or having to turn up the heat.
Friday, May 4, 2007
Red Tape
Well, I was hoping to know what my next round of treatments would be by this evening, but apparently I'm going to have to wait a little bit longer to find out what the next plan of attack is going to be. Because the last round of treatments involved a double blind study of a protocol awaiting F.D.A. approval, my doctor has had to go through a bunch of channels to find out exactly what medication I was recieveing the last few months. Apparently, I was getting and approved medication, so now the challenge is to get an exception for me and allow me to knowingly take the unapproved (but promising) protocol.
I read that it costs over $1billion to introduce a new medication on the market. That goes for the stuff that ends up being unapproved as well. That's why drugs cost so much damn money (the lesson here, kids, is that you should learn how to grow your own pot). And a big reason for these extensive studies is the legal system. I never could understand the mentality of some people. I mean, we live in a country where people will sue someone who gives them CPR for cracking heir ribs in the process. Excuse me, asshat, but if you didn't revieve CPR, you would be a DEAD MOTHERFUCKER! I'd reather be a living motherfucker with a cracked rib than a dead motherfucker with a perfectly healthy rib. But that's just me. I mean, I also think that the skiing at Snowbird is better than Alta, so what do I know?
I read that it costs over $1billion to introduce a new medication on the market. That goes for the stuff that ends up being unapproved as well. That's why drugs cost so much damn money (the lesson here, kids, is that you should learn how to grow your own pot). And a big reason for these extensive studies is the legal system. I never could understand the mentality of some people. I mean, we live in a country where people will sue someone who gives them CPR for cracking heir ribs in the process. Excuse me, asshat, but if you didn't revieve CPR, you would be a DEAD MOTHERFUCKER! I'd reather be a living motherfucker with a cracked rib than a dead motherfucker with a perfectly healthy rib. But that's just me. I mean, I also think that the skiing at Snowbird is better than Alta, so what do I know?
Thursday, May 3, 2007
Taking the power back
Last night I talked to two friends of mine who told me that even if I spend all of next wek in the hospital getting the shit pounded out of me by IL2, I should still enter and start that triathlon I signed up for on May 19. Earlier in the day I had already gotten back on the horse (a carbon fiber horse) and rode 31 miles. Now right now I am not anywhere near to being what I would call in shape, so today I decided that I needed to test my body.
First stop: the campus of SUNY Delhi, the nearest pool where I can swim laps. I figured that I might as well try for 1000m, the didtance of the swim leg of the Harriman race. After seven or eight links (a link is a half lap, or 25m. It takes 40 links to swim 1000m) my arms began to get sore. But I was determined to swim until I reached my goal or my arms gave out. And my arms didn't give out. After a few more laps the pain faded, and I just kept on swimming, until I finally counted to 40. I felt so good that I even did a few more laps for god measure. Plus, it cost me three bucks to use the damn pool, and I wanted my money's worth.
I hoped into my car, and drove home. But first I stopped at the local rail trail to go for a run. Wanted to run four miles, but the trail only has mileage markers at road crossings. So I calculated the distance from one road to another via the trail to be 2.3 miles, 4.6 roundtrip. Again my philosophy was to run until I couldn't run anymore. I had my iPod on, and had a playlist designed for a 45 minute running workout. Actually,it's 48 minutes to be precise. And I swear that iPod helped me run the entire distance (okay, I slowed down to walk around a few puddles and cross one of the roads, but never more than a few steps at a time) Every time I felt like giving up, the next song would take me to the next level. I mean, you can't fucking quit when you hear "Sabotage" by the Beastie Boys or the Rollins Band destroying their way through "Tearing". I mean, I wouldn't want Henry to think I'm a pussy. And I finished my 4.6 mile run in 48 minutes on the nose.
It felt good to reach these numbers today. I now know I have the endurance to swim the distance, and the run was a PR as far as distance goes. I don't know when, if ever, I have run that far without stopping.
On a related note, I recieved this in an email from an oncologist friend in SLC: For responders to immunotherapy (and I would cautiously put in you that category), we sometimes can see waxing and waning of metastatic lesions. That news helps to give me hope, and makes it easier to get into a positive frame of mind.
First stop: the campus of SUNY Delhi, the nearest pool where I can swim laps. I figured that I might as well try for 1000m, the didtance of the swim leg of the Harriman race. After seven or eight links (a link is a half lap, or 25m. It takes 40 links to swim 1000m) my arms began to get sore. But I was determined to swim until I reached my goal or my arms gave out. And my arms didn't give out. After a few more laps the pain faded, and I just kept on swimming, until I finally counted to 40. I felt so good that I even did a few more laps for god measure. Plus, it cost me three bucks to use the damn pool, and I wanted my money's worth.
I hoped into my car, and drove home. But first I stopped at the local rail trail to go for a run. Wanted to run four miles, but the trail only has mileage markers at road crossings. So I calculated the distance from one road to another via the trail to be 2.3 miles, 4.6 roundtrip. Again my philosophy was to run until I couldn't run anymore. I had my iPod on, and had a playlist designed for a 45 minute running workout. Actually,it's 48 minutes to be precise. And I swear that iPod helped me run the entire distance (okay, I slowed down to walk around a few puddles and cross one of the roads, but never more than a few steps at a time) Every time I felt like giving up, the next song would take me to the next level. I mean, you can't fucking quit when you hear "Sabotage" by the Beastie Boys or the Rollins Band destroying their way through "Tearing". I mean, I wouldn't want Henry to think I'm a pussy. And I finished my 4.6 mile run in 48 minutes on the nose.
It felt good to reach these numbers today. I now know I have the endurance to swim the distance, and the run was a PR as far as distance goes. I don't know when, if ever, I have run that far without stopping.
On a related note, I recieved this in an email from an oncologist friend in SLC: For responders to immunotherapy (and I would cautiously put in you that category), we sometimes can see waxing and waning of metastatic lesions. That news helps to give me hope, and makes it easier to get into a positive frame of mind.
Wednesday, May 2, 2007
Time to make a run
In the last 24 hours, I have recieved a lot of support messages from people. I was thinking of a good metaphor, and I guess it's like playing basketball. You might be losing a game, and thinking your defeated. But the crowd is still behind you, cheering. That's when you have to step it up, hustle your ass off, and take those big shots. It's easy to win when your ahead. But it's those come from behind wins that you remember. And even though there are only a few guys on the floor playing the game, all of those people in the stands share the experience of winning.
Right now I'm down by ten. There's plenty of time on the clock left. But the sooner I start to cut into that lead, the better. It's time to take things to the next level. Reach inside and accomplish things that I never thought I could do before. SHUT THAT MOTHERFUCKER DOWN!!! Take the big shot, make the big steal, grab the important rebound. Work harder than the opponent. Fuck the odds. Remember the 1980 US Olympic Hockey team. Nobody is unbeatable. Everyone has it's weakness. Gotta find the weakness, exploit it, and take it the fuck out!!!
Right now I'm down by ten. There's plenty of time on the clock left. But the sooner I start to cut into that lead, the better. It's time to take things to the next level. Reach inside and accomplish things that I never thought I could do before. SHUT THAT MOTHERFUCKER DOWN!!! Take the big shot, make the big steal, grab the important rebound. Work harder than the opponent. Fuck the odds. Remember the 1980 US Olympic Hockey team. Nobody is unbeatable. Everyone has it's weakness. Gotta find the weakness, exploit it, and take it the fuck out!!!
Tuesday, May 1, 2007
Overcome by fear
Today my worst fear came true, again. Yet another round of treatment has failed to get control of the melanoma in my lungs. Naturally, I am extremely upset right now. It is becoming much more difficult to try and maintain a positive outlook on things.
The news today was much worse than previous visits. It seems that the progression this time was more severe than it had been in the past. Even though the doctors are telling me that things are relatively small, it is not comforting news to me.
Right now I am in shock and incredibly angry. Angry at a lot of things. This news is just incredibly painful to accept. Plans that I had made are yet again being pushed away, the future yet again filed with uncertainness. I just want my fucking life back. I want to move forward, not be stuck in a holding pattern. I’ve been dealing with this for a year now, trying anything and everything. Yet there are still no fucking answers, just more questions.
It’s going to be a rough couple of weeks. I was feeling kind of depressed as it was. I had a few things I was looking forward to and planning, but now a lot of that will have to be put on hold. Like this triathlon I had been training for in a few weeks. It looks like next week I will probably be back in the hospital on Interleukin II again. A week of that will pretty much negate any training that I have done. There is pretty much no way that I will be able to swim 1000 meters, bike 29 miles, and run a ten K a week after I get out. I have also been thinking strongly about moving back to New York City and concentrating on my career. I’m not so sure about that now. Hell, moving anywhere. I’m stuck back at my parents’ house, living in the town I never liked living in. I don’t really have any friends here anymore, nobody to talk to or go out with or just to do things with to take my mind off of all of this shit.
I haven’t been this scared in a long time, if ever. Hearing the bad news doesn’t get easier, it gets harder. The more times you hear it, the less hope you have. You try to ignore the statistics and the negative facts, but you can’t. I can’t help but wonder what is going to happen to me.
I can not rationalize any of this. This doesn’t make sense to me. Just about everything I think of is pissing me off. There is a lot of rage in me right now, as well as a deep sadness. I’m too sad to even cry. I don’t want to do anything. There’s nothing to say. Nothing anyone can say to me. I feel emotionally numb. I’m trying to get excited about something. Anything. I can’t think of anything at the moment. I don’t even want to listen to the new Dinosaur Jr. album- the first one with the original lineup in nearly two decades- that I downloaded last night, hours after its release.
It’s supposed to rain tomorrow. If it was a nice day, I might go out for a long bike ride to take my mind off of things. But if I wake up tomorrow to the sound of raindrops pelting my window, I probably won’t even want to get out of bed. I’m not looking forward to waking up tomorrow. I just want to stay in my dreams, where none of this shit will be there to bother me. Actually, I hope I don’t have any dreams tonight. If I dream, than I only get to wake up to disappointment. I’ve had enough of that, I don’t need anymore.
Fuck, how the hell am I supposed to cope with this? I don’t have any fucking clue. I just wish I could go back in time and change things. Can’t help but think if only I had caught this sooner I wouldn’t be in this situation. I would have gone on with my life and been doing whatever it is people do with their lives. I’d still have worries, like car payments and global warming, but I wouldn’t be questioning how much time I might have before I die. That’s a pretty damn tough thing to have to think about. Nobody has given me any sort of timetable (and that’s good), but it doesn’t stop me from worrying. I mean, I’m not talking about a broken bone or a torn ACL, I’m dealing with fucking cancer.
I’m trying hard to be positive, I really am. But it’s not easy. The fear is overwhelming, nearly paralyzing. I feel like I’m looking out into a void, wondering what is out there. I’m looking for some light, but for now all I see is darkness out there. Even if there is light at the end of this tunnel, I know it is going to be a rough road. The IL2 treatment beats the shit out of you. If it works this time, I’m certainly willing to take it. A few days in hell is a small price to pay to get this shit out of my body. And it showed signs of working the last time. And in conjunction with the last round of therapy, it might be just the combination I need to defeat this once and for all.
I should know what is going to happen next in a few days. My doctor has to make a few calls, talk to a few people, before coming up with a game plan. But until then, it’s going to be a rough week of waiting. At least when I’m in treatment, I feel like I’m fighting, being proactive. Right now I just want to hide away, though. Disappear. Disconnect from reality. I wish I knew what to say to make me feel better, but I don’t. I haven’t felt this bad in a long time. I just want it to go away.
The news today was much worse than previous visits. It seems that the progression this time was more severe than it had been in the past. Even though the doctors are telling me that things are relatively small, it is not comforting news to me.
Right now I am in shock and incredibly angry. Angry at a lot of things. This news is just incredibly painful to accept. Plans that I had made are yet again being pushed away, the future yet again filed with uncertainness. I just want my fucking life back. I want to move forward, not be stuck in a holding pattern. I’ve been dealing with this for a year now, trying anything and everything. Yet there are still no fucking answers, just more questions.
It’s going to be a rough couple of weeks. I was feeling kind of depressed as it was. I had a few things I was looking forward to and planning, but now a lot of that will have to be put on hold. Like this triathlon I had been training for in a few weeks. It looks like next week I will probably be back in the hospital on Interleukin II again. A week of that will pretty much negate any training that I have done. There is pretty much no way that I will be able to swim 1000 meters, bike 29 miles, and run a ten K a week after I get out. I have also been thinking strongly about moving back to New York City and concentrating on my career. I’m not so sure about that now. Hell, moving anywhere. I’m stuck back at my parents’ house, living in the town I never liked living in. I don’t really have any friends here anymore, nobody to talk to or go out with or just to do things with to take my mind off of all of this shit.
I haven’t been this scared in a long time, if ever. Hearing the bad news doesn’t get easier, it gets harder. The more times you hear it, the less hope you have. You try to ignore the statistics and the negative facts, but you can’t. I can’t help but wonder what is going to happen to me.
I can not rationalize any of this. This doesn’t make sense to me. Just about everything I think of is pissing me off. There is a lot of rage in me right now, as well as a deep sadness. I’m too sad to even cry. I don’t want to do anything. There’s nothing to say. Nothing anyone can say to me. I feel emotionally numb. I’m trying to get excited about something. Anything. I can’t think of anything at the moment. I don’t even want to listen to the new Dinosaur Jr. album- the first one with the original lineup in nearly two decades- that I downloaded last night, hours after its release.
It’s supposed to rain tomorrow. If it was a nice day, I might go out for a long bike ride to take my mind off of things. But if I wake up tomorrow to the sound of raindrops pelting my window, I probably won’t even want to get out of bed. I’m not looking forward to waking up tomorrow. I just want to stay in my dreams, where none of this shit will be there to bother me. Actually, I hope I don’t have any dreams tonight. If I dream, than I only get to wake up to disappointment. I’ve had enough of that, I don’t need anymore.
Fuck, how the hell am I supposed to cope with this? I don’t have any fucking clue. I just wish I could go back in time and change things. Can’t help but think if only I had caught this sooner I wouldn’t be in this situation. I would have gone on with my life and been doing whatever it is people do with their lives. I’d still have worries, like car payments and global warming, but I wouldn’t be questioning how much time I might have before I die. That’s a pretty damn tough thing to have to think about. Nobody has given me any sort of timetable (and that’s good), but it doesn’t stop me from worrying. I mean, I’m not talking about a broken bone or a torn ACL, I’m dealing with fucking cancer.
I’m trying hard to be positive, I really am. But it’s not easy. The fear is overwhelming, nearly paralyzing. I feel like I’m looking out into a void, wondering what is out there. I’m looking for some light, but for now all I see is darkness out there. Even if there is light at the end of this tunnel, I know it is going to be a rough road. The IL2 treatment beats the shit out of you. If it works this time, I’m certainly willing to take it. A few days in hell is a small price to pay to get this shit out of my body. And it showed signs of working the last time. And in conjunction with the last round of therapy, it might be just the combination I need to defeat this once and for all.
I should know what is going to happen next in a few days. My doctor has to make a few calls, talk to a few people, before coming up with a game plan. But until then, it’s going to be a rough week of waiting. At least when I’m in treatment, I feel like I’m fighting, being proactive. Right now I just want to hide away, though. Disappear. Disconnect from reality. I wish I knew what to say to make me feel better, but I don’t. I haven’t felt this bad in a long time. I just want it to go away.
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