It feels like it's time for an update.
I'm coming towards, what I hope is, the end of my chemo. The schedule has me down for one more treatment and then scans to see how the therapy has worked. I don't feel too positive about it. I'm sure that I'm not done.
The last couple of months have brought a relatively new part of my cancer to light; pain. Until now, the cancer itself has not caused me any pain. When it all started I had an infection that hurt quite a bit. All of the surgeries brought post-op pain with them. At one point I also had some adhesions that brought an almost unbearable pain. With all of that, the cancer itself has never hurt, but of course that has changed. Last month I had to take another trip into the hospital for excruciating pain in my abdomen and chest. The general consensus was that it was the tumors causing the pain. I've been on a fairly regular regimen of narcotics since then. The pain has subsided a little, and I'm less and less dependent on the pills, but it still stings a little.
So that's the basics. On the psychological and emotional fronts, things have been a bit rocky as well. The last few days in particular, have been difficult. I'm back into my head. Back into thinking about the enormity of the situation, about the absolute hugeness of cancer. As I began this post I thought I was going to be able to share with you the sadness and dull grinding of the situation, but now I find that I cannot. You have heard it all before, as I have laid it all out before. Cancer is bad. Chemo is bad. This is horrible. Blah Blah Blah.
I'll try and regroup and see if I can't find the words. For now, know that I'm trying, and the trying is harder. I love you all.
B
Monday, December 03, 2007
Friday, October 26, 2007
I stood beneath an orange sky
I've said it before, and I will continue to say it with conviction, because never before in the history of our lexicon have two words been combined to form a single sentence which bears such validity; chemo sucks.
I won't bore you with the horrible details. Those of you who check this blog are well aware of the physical, emotional, and psychological beatings I take.
Here I am though, toughing through it. I don't often strike a self congratulatory tone, but I have to say sometimes I'm impressed with my own ability to deal with it. I'm a strong, resilient, and resourceful sonofabitch. But then you knew that, didn't you?
Or did you? It occurred to me lately that my life has gone through several dramatically different stages over the years. Through them all, I feel that I've always been me, but the circumstances around them have varied. I was speaking with a long time friend the other day and it came up that there are a lot of people in my life right now that don't know what I look like with hair. Yes, that seems silly, but it's symbolic of an often overlooked but none the less important truth; we are all a sum of our parts, but not everyone knows all those pieces. By the way, my hair was brown and curly.
It struck me that there are even some of you who don't know a Billy without cancer. As I move on with my life and meet knew friends, there will be many more of you. Though you may not know what I was like before this disease set up shop in my intestinal track, you still know my strengths, my weaknesses, my philosophy. You know me. But I wanted to share with you some things you may not know.
When I was in grammar school I was "gifted". I skipped grades for certain subjects and was taking high school courses starting in the sixth grade. I grew up in a very close Sicilian family where the women outnumbered the men by 2 to 1. My father first taught me how to fire and care for a gun when I was around 6. I went to an all boys high school. I am an Eagle Scout. I was involved in some questionable activities as a teenager with a certain group of friends. We once threw a party that did considerable damage to a house. I stood on the George Washington Bridge for Hands Across America. I was in a fraternity. Actually, I was president of my chapter briefly. I've always wanted to be an actor, or a director. I have been mugged, shot at, and in quite a few fights. I have attended, at last count, 4 colleges, one of them twice. I have been an EMT since I was 19. I volunteered on a first aid squad and worked for professional services for over 10 years. I've watched people die, I've saved peoples' lives, I've delivered babies. I once swam for over a mile. I worked in strip clubs, and a few other bars, for over 10 years. I was a dj, a bouncer, and a club manager. I dated a few strippers. I hung with VIPs at the Limelight, when it was relevant. I held my mother's hand as she died. I've been in love too many times to count. I was engaged briefly in the late 90's. I've been to about 30 states and 9 countries.
The things you think about when you have cancer!
I hope I get to add a lot more to that list.
I won't bore you with the horrible details. Those of you who check this blog are well aware of the physical, emotional, and psychological beatings I take.
Here I am though, toughing through it. I don't often strike a self congratulatory tone, but I have to say sometimes I'm impressed with my own ability to deal with it. I'm a strong, resilient, and resourceful sonofabitch. But then you knew that, didn't you?
Or did you? It occurred to me lately that my life has gone through several dramatically different stages over the years. Through them all, I feel that I've always been me, but the circumstances around them have varied. I was speaking with a long time friend the other day and it came up that there are a lot of people in my life right now that don't know what I look like with hair. Yes, that seems silly, but it's symbolic of an often overlooked but none the less important truth; we are all a sum of our parts, but not everyone knows all those pieces. By the way, my hair was brown and curly.
It struck me that there are even some of you who don't know a Billy without cancer. As I move on with my life and meet knew friends, there will be many more of you. Though you may not know what I was like before this disease set up shop in my intestinal track, you still know my strengths, my weaknesses, my philosophy. You know me. But I wanted to share with you some things you may not know.
When I was in grammar school I was "gifted". I skipped grades for certain subjects and was taking high school courses starting in the sixth grade. I grew up in a very close Sicilian family where the women outnumbered the men by 2 to 1. My father first taught me how to fire and care for a gun when I was around 6. I went to an all boys high school. I am an Eagle Scout. I was involved in some questionable activities as a teenager with a certain group of friends. We once threw a party that did considerable damage to a house. I stood on the George Washington Bridge for Hands Across America. I was in a fraternity. Actually, I was president of my chapter briefly. I've always wanted to be an actor, or a director. I have been mugged, shot at, and in quite a few fights. I have attended, at last count, 4 colleges, one of them twice. I have been an EMT since I was 19. I volunteered on a first aid squad and worked for professional services for over 10 years. I've watched people die, I've saved peoples' lives, I've delivered babies. I once swam for over a mile. I worked in strip clubs, and a few other bars, for over 10 years. I was a dj, a bouncer, and a club manager. I dated a few strippers. I hung with VIPs at the Limelight, when it was relevant. I held my mother's hand as she died. I've been in love too many times to count. I was engaged briefly in the late 90's. I've been to about 30 states and 9 countries.
The things you think about when you have cancer!
I hope I get to add a lot more to that list.
Monday, October 08, 2007
"All that we see or seem is but a dream within a dream" E.A. Poe
4 am. Do you know what's on TV at 4 am? Lots of infomercials for air beds, or a pain relief light, or food storage bags, or titillating videos featuring hundreds of drunk girls being drunk girls. Maybe if I mounted one of those lights on my new bed I could trick myself into forgetting the day ahead of me and actually get some sleep, but I doubt it. And since I've mastered the bachelor style of buying what I need to make my meals as I need them, and I spent my 20's and early 30's surrounded by drunk girls, I need to find something else. Thankfully the "I Love Lucy" of the 21st century, "Law and Order" is always on, somewhere.
For those of you who are still following me (which seems awfully redundant. who else would be reading this?) here is an update.
I started chemo 3 weeks ago. The first dose was so toxic that I spent an entire week evacuating every drop of fluid from my body. I dropped 24 pounds in 7 days. Instead of my second treatment, my doctor ordered me to belly up to the IV bar for a few days and replenish during week 2. I got a little bit of a break that week, but it was short lived. Last Monday I returned for treatment. My doctor read me the riot act for not coming to see him sooner that first week. I suggested that we just take as read that I will be sick and deal with those consequences. He balked and said that we should adjust the meds and I wouldn't be as sick. He gave me the lowest dose of the drugs and sent me on my way. Turns out the doc might know what he was talking about. I didn't vomit this week at all. I did have a little issue with fluids shooting out of my ass at supersonic speed, but at least I was able to eat and maintain hydration. Tomorrow he'll hear the news and turn the drugs up just a little.
Once again, the drugs do more than just force my body to empty itself from every orifice. Chemo fogs my head, saps all of my energy, obliterates my libido. I spent the week either in bed or on the couch. The walk in between often wears me out. Though, by Saturday some of me had returned. In a rebound affect, my appetites went from one extreme to the other. ALL of them. Someday, when my mind is clear and I can write like I know I can write, I'll try to explain the absolute frustration of that phenomena.
I'm starting to miss my life. Sure, in the last 3 years (it's been 3 years since my first diagnosis) I've tried to grab hold of the moments in between being sick. But sometimes I think about how things were going right before it all started, and man was it sweet. I was at the beginning of what could have been a fantastic chapter, and I'm anxious to get back to it.
After this last round of drugs, my psyche took a big hit. I was spiraling down pretty quick, considering maybe it was time to bring in a professional. But then there was a moment. A text message on my phone. A notification that slapped my face and reminded me why I do this. My sister, my little sister, my love and savior told me she is going to bring another life into our family!!!! While I am excited that there will be another Lamazza-Dall-Klag, the part that gives me strength is that I know this is what my sister really wanted. She is maternal. She loves family. Knowing how happy this makes her is enough to get me to do anything. She, above all others I know, deserves to be happy.
If this week goes not horribly, maybe I'll write more. I have so much more to write, but my brain can't make the connections right now.
For those of you who are still following me (which seems awfully redundant. who else would be reading this?) here is an update.
I started chemo 3 weeks ago. The first dose was so toxic that I spent an entire week evacuating every drop of fluid from my body. I dropped 24 pounds in 7 days. Instead of my second treatment, my doctor ordered me to belly up to the IV bar for a few days and replenish during week 2. I got a little bit of a break that week, but it was short lived. Last Monday I returned for treatment. My doctor read me the riot act for not coming to see him sooner that first week. I suggested that we just take as read that I will be sick and deal with those consequences. He balked and said that we should adjust the meds and I wouldn't be as sick. He gave me the lowest dose of the drugs and sent me on my way. Turns out the doc might know what he was talking about. I didn't vomit this week at all. I did have a little issue with fluids shooting out of my ass at supersonic speed, but at least I was able to eat and maintain hydration. Tomorrow he'll hear the news and turn the drugs up just a little.
Once again, the drugs do more than just force my body to empty itself from every orifice. Chemo fogs my head, saps all of my energy, obliterates my libido. I spent the week either in bed or on the couch. The walk in between often wears me out. Though, by Saturday some of me had returned. In a rebound affect, my appetites went from one extreme to the other. ALL of them. Someday, when my mind is clear and I can write like I know I can write, I'll try to explain the absolute frustration of that phenomena.
I'm starting to miss my life. Sure, in the last 3 years (it's been 3 years since my first diagnosis) I've tried to grab hold of the moments in between being sick. But sometimes I think about how things were going right before it all started, and man was it sweet. I was at the beginning of what could have been a fantastic chapter, and I'm anxious to get back to it.
After this last round of drugs, my psyche took a big hit. I was spiraling down pretty quick, considering maybe it was time to bring in a professional. But then there was a moment. A text message on my phone. A notification that slapped my face and reminded me why I do this. My sister, my little sister, my love and savior told me she is going to bring another life into our family!!!! While I am excited that there will be another Lamazza-Dall-Klag, the part that gives me strength is that I know this is what my sister really wanted. She is maternal. She loves family. Knowing how happy this makes her is enough to get me to do anything. She, above all others I know, deserves to be happy.
If this week goes not horribly, maybe I'll write more. I have so much more to write, but my brain can't make the connections right now.
Tuesday, August 28, 2007
She stands upon Southampton Dock
First off, the surgery went very well. The doctor was able to remove my gallbladder with a laparascope, and I was out in two days. I'm actually back in my own home right now. My belly is a little sore, with seven little incisions about, but other than that I'm physically fine.
Now, onto the truth telling portion of our show.
I'm sad. Many of you who see me on a regular basis don't know this. Many of you who talk to me a lot do not know this. Since this whole ordeal has started there have only been three people who have seen the actual physical manifestations of my grief, and two of them were family. I'm not saying that I've been sad the whole time, but right now that is simply the truth.
It's a truth that is very difficult to admit. Part of me feels that if I let people know that I'm sad, I'm letting them down. Everyone does their best to be supportive and optimistic about the whole situation, and I don't want them to think their efforts are not doing me any good. Honestly, they are. I love all of you and I greatly appreciate all that you have done for me. But tonight, and for the last few weeks, I've been sad. I'm sad that I have cancer, that I still have cancer, that I need to go back to chemo. I'm sad because I miss my mother. I'm sad because in spite of my normally strong outlook on the big picture, there is still a part of me that knows this shit is going to kill me. I'm sad because this is the toughest thing I have ever had to do in my life.
For those of you who will see me after reading this, we will not speak of it. We will joke about the cancer. We will be sarcastic and witty. We will discuss politics, and television, and food, and video games. But we wont talk about my sadness. I know that all of you, in the privacy of your own worlds away from me, feel your sadness for me. You may share that sadness with others, but not with me. You think that if I see you are sad for me that I will in turn become more sad. For the most part this is fine, this is after all, me. When my mother was dying from cancer, I was the biggest joker of them all with her, and she needed that, as do I. My mother had her sad moments, but she kept them from most people. She kept them to share with my sister and my father and me, and even then I suspect she kept many from us. In fact, now I'm sure of it. This is how our relationships are, you and me. We have been friends for years. We always joke about life. We call each other names and make fun of each others proclivities. When there is serious work to be done, we do it, and we do it well. This is the way it has always been and this is the way we will deal with the cancer. It is good. It is me.
I'm not depressed, at least I don't believe I am. I'm not ready to throw in the towel (how I hate using such a trite euphemism). I'm not crying myself to sleep. But this is probably the longest stretch that I have been really sad since the whole thing started. Part of it is because I'm feeling beat down, that I've tried so hard for so long and it's still not done. I'm not sad 24 hours a day either. I've had many moments of happiness in the last few weeks. I've been out, I've seen friends, I've had fun. I'm looking forward to my vacation in a couple of weeks. (though, there is an odd mental struggle I'm having as well. Do I really need a vacation since I've not really been working for a few weeks now?) But still, I am sad. My mind is dull and listless. My body is lazy. My soul is pulling me down by my shoulders.
For those of you who have been following this blog, you know that it is at this point, before I close, that I would turn it all over and tell you that I'm fine. That sharing this with you has been the catharsis I needed and just getting the words out there has helped. That I'm going to be fine. I'm not going to do that tonight. I'm sad.
Now, onto the truth telling portion of our show.
I'm sad. Many of you who see me on a regular basis don't know this. Many of you who talk to me a lot do not know this. Since this whole ordeal has started there have only been three people who have seen the actual physical manifestations of my grief, and two of them were family. I'm not saying that I've been sad the whole time, but right now that is simply the truth.
It's a truth that is very difficult to admit. Part of me feels that if I let people know that I'm sad, I'm letting them down. Everyone does their best to be supportive and optimistic about the whole situation, and I don't want them to think their efforts are not doing me any good. Honestly, they are. I love all of you and I greatly appreciate all that you have done for me. But tonight, and for the last few weeks, I've been sad. I'm sad that I have cancer, that I still have cancer, that I need to go back to chemo. I'm sad because I miss my mother. I'm sad because in spite of my normally strong outlook on the big picture, there is still a part of me that knows this shit is going to kill me. I'm sad because this is the toughest thing I have ever had to do in my life.
For those of you who will see me after reading this, we will not speak of it. We will joke about the cancer. We will be sarcastic and witty. We will discuss politics, and television, and food, and video games. But we wont talk about my sadness. I know that all of you, in the privacy of your own worlds away from me, feel your sadness for me. You may share that sadness with others, but not with me. You think that if I see you are sad for me that I will in turn become more sad. For the most part this is fine, this is after all, me. When my mother was dying from cancer, I was the biggest joker of them all with her, and she needed that, as do I. My mother had her sad moments, but she kept them from most people. She kept them to share with my sister and my father and me, and even then I suspect she kept many from us. In fact, now I'm sure of it. This is how our relationships are, you and me. We have been friends for years. We always joke about life. We call each other names and make fun of each others proclivities. When there is serious work to be done, we do it, and we do it well. This is the way it has always been and this is the way we will deal with the cancer. It is good. It is me.
I'm not depressed, at least I don't believe I am. I'm not ready to throw in the towel (how I hate using such a trite euphemism). I'm not crying myself to sleep. But this is probably the longest stretch that I have been really sad since the whole thing started. Part of it is because I'm feeling beat down, that I've tried so hard for so long and it's still not done. I'm not sad 24 hours a day either. I've had many moments of happiness in the last few weeks. I've been out, I've seen friends, I've had fun. I'm looking forward to my vacation in a couple of weeks. (though, there is an odd mental struggle I'm having as well. Do I really need a vacation since I've not really been working for a few weeks now?) But still, I am sad. My mind is dull and listless. My body is lazy. My soul is pulling me down by my shoulders.
For those of you who have been following this blog, you know that it is at this point, before I close, that I would turn it all over and tell you that I'm fine. That sharing this with you has been the catharsis I needed and just getting the words out there has helped. That I'm going to be fine. I'm not going to do that tonight. I'm sad.
Monday, August 20, 2007
Will someone please tell Barney those are not candy
Tomorrow. The day after today. The day before the day after tomorrow. A week from a week and a day ago. Domani. (in actuality, for clarity's sake, we're talking Tuesday, August 21st here).
Surgery.
They're taking out my gallbladder. I'm going to wind up with nothing more than a hollow cavern where I once had a working digestive system.
I'm going to write something soon. Something beautiful and prophetic and epic, and melodic, and all sorts of nice stuff. It's been a while, but I can feel it in there somewhere. I just hope it's not in my gallbladder.
See you all in a week or so.
Surgery.
They're taking out my gallbladder. I'm going to wind up with nothing more than a hollow cavern where I once had a working digestive system.
I'm going to write something soon. Something beautiful and prophetic and epic, and melodic, and all sorts of nice stuff. It's been a while, but I can feel it in there somewhere. I just hope it's not in my gallbladder.
See you all in a week or so.
Monday, July 30, 2007
Ward, you were a little hard on the Beaver last night
Good news friends, I didn't have to go to chemo today!
Oh wait....this is me we're talking about. Hmmmm There has to be a catch.
The summer started out promising, looking like I was going to be able to enjoy a few months of cancer free fun. But of course nastiness reared its head once again and the cancer slithered out from behind whatever rock it called home. It was a rough couple of weeks there. I was pretty angry. I was scared. I wasn't sure how I was going to make it through another round of chemo. But I've been through this before. I retreated for a bit, but came out the other end. As always I settled on the "it could be worse" approach and steeled myself for another round of sickening medicine. I was ok with it, as much as anyone could be. But then, oh yes then, right then, there were the stones. The pain that I'm having in my abdomen, blinding body doubling pain which leads to projectile vomiting, is being induced by gallstones. This is an issue that has to be resolved before I can start chemo.
"Oh Billy, that's not too bad" you say? "They can do that with a scope and a small incision" you think? Well, first off let's just say that ENOUGH IS ENOUGH already. Cancer, infections, adhesions, more cancer, more infections and now gallstones????
To top it off, my surgeon is not sure that he can remove my gallbladder with a laparoscope. Seems that the abundance of surgeries I've already have may have left far too much scar tissue right in the path that he would normally use. Chances are pretty good that I'll be back on the operating table by the end of the week, flayed open once again.
I'm not beaten yet, not much. But I have to ask; How much longer to I have to be upbeat? Why do I have to "look on the bright side"? Why is it necessary to "keep my chin up", "fight the good fight", "don't give up"?
Stay tuned. I'm sure there's more good news to come. (yes, that was dripping with sarcasm)
Oh wait....this is me we're talking about. Hmmmm There has to be a catch.
The summer started out promising, looking like I was going to be able to enjoy a few months of cancer free fun. But of course nastiness reared its head once again and the cancer slithered out from behind whatever rock it called home. It was a rough couple of weeks there. I was pretty angry. I was scared. I wasn't sure how I was going to make it through another round of chemo. But I've been through this before. I retreated for a bit, but came out the other end. As always I settled on the "it could be worse" approach and steeled myself for another round of sickening medicine. I was ok with it, as much as anyone could be. But then, oh yes then, right then, there were the stones. The pain that I'm having in my abdomen, blinding body doubling pain which leads to projectile vomiting, is being induced by gallstones. This is an issue that has to be resolved before I can start chemo.
"Oh Billy, that's not too bad" you say? "They can do that with a scope and a small incision" you think? Well, first off let's just say that ENOUGH IS ENOUGH already. Cancer, infections, adhesions, more cancer, more infections and now gallstones????
To top it off, my surgeon is not sure that he can remove my gallbladder with a laparoscope. Seems that the abundance of surgeries I've already have may have left far too much scar tissue right in the path that he would normally use. Chances are pretty good that I'll be back on the operating table by the end of the week, flayed open once again.
I'm not beaten yet, not much. But I have to ask; How much longer to I have to be upbeat? Why do I have to "look on the bright side"? Why is it necessary to "keep my chin up", "fight the good fight", "don't give up"?
Stay tuned. I'm sure there's more good news to come. (yes, that was dripping with sarcasm)
Monday, July 16, 2007
Ten ways to Sunday
Friday the 13th. Sure, it sounds ominous, but does it have to be? Was I destined for bad news last week when I visited my oncologist to get the results from my latest cat scan? Would this dark day of dark days hold fast its reputation? You bet your sweet patootie it would!!! I've got cancer. Still. "Several" lymph nodes, is how they put it. So it's back to chemo for me, starting on July 30th.
This next section is devoid of insight, poetry, journalistic integrity, or any redeeming social value what so ever. If you are of slight mind and delicate sensibilities, and are easily offended by words, go no further. Then again, if you are of slight mind and delicate sensibilities, and are easily offended by words, you're not reading this, because you and I probably wouldn't get along anyway.
This goddamnmotherfuckercocksuckerassreamingshiteatingsonofamotherlesswhore disease just won't seem to go away!!! I'm so fucking pissed! How much more of this shit am I expected to deal with?!?! I've lost out on half of my 30's, and I'll be goddamn lucky to make it anywhere into my 40's. Sure, I'm alive, but this is living? Having to shove gallons of poison into my veins every few months? Having to spend my summers puking up every last bit of chum? Wasting away until I look like a fuckin heroin addicted anorexic? Having to curl up in a mental haze while having some vague sense of the reality of the world around me? What the fuck did I ever do to you? You'd think I'd spent my life molesting puppies and painting apocryphal scenes with the entrails of human sacrifices. This totally sucks! SUCKS!!!!!!!!!!!
Whew! Ok, got that out.
I'm not about to tell you there was a "good" part of the news I got, because in reality there is none. Sure, it could have been worse, I could be writing my own eulogy, but the fact is that when you are told you still have cancer, after 3 years, and that you have to go back to the worst hell on earth that you have ever experienced, none of it is actually good. I won't refer to it as "good" news but for those of you who need to find the bright side, I offer you a few "facts": The cancer hasn't spread to organs, it looks like it's in the lymph nodes; the last time I took this particular chemo drug, it did a very good job on the tumors I had at the time; this most likely isn't new cancer, it's just cells that have avoided all the previous attempts at banishing them from my body.
I was having fun pretending I was well. The summer had started very well. There was trips down the Shore, a wedding, a visit from Dave, a new apartment, a new position at work. But now it stops. The brakes have been hit hard and I've got two weeks to skid into the abyss. I don't know how bad the chemo will be, but I'd put my money on "horrible". I'm sure by now you know the drill. When I'm too sick to care for myself, and you all know how much I LOVE that, I'll be staying at Dad's. I will, however, be doing everything in my power to spend as much time as possible in my own place.
Oh, yeah...forgot to mention, I'm also having some sort of "red hot iron jabbed into my stomach" pains that so far, doesn't seem to be directly related to my current infestation of carcinoma. It got so bad that I had to hit the ER on Saturday and get dosed up with dilaudin just so I could stop crying. I have to go see some other docs to figure out what the hell that is before I can start the chemo. Oh joy of joys!
That's it for now. I'm going to Kentucky tomorrow for a couple of days for work. I hope I can make it through that. Then it's back home on Thursday and I'll try and figure out where my head is at then. Should I party my last couple of weekends before chemo? That is, of course, if my body will actually let me. Or will I just retreat into myself, watch a lot of movies, play a lot of X-Box, and sulk quietly until they come to take me away? Yeah, I know what you want, but you know that sometimes I just have to be left alone. I'll figure it out later.
This next section is devoid of insight, poetry, journalistic integrity, or any redeeming social value what so ever. If you are of slight mind and delicate sensibilities, and are easily offended by words, go no further. Then again, if you are of slight mind and delicate sensibilities, and are easily offended by words, you're not reading this, because you and I probably wouldn't get along anyway.
This goddamnmotherfuckercocksuckerassreamingshiteatingsonofamotherlesswhore disease just won't seem to go away!!! I'm so fucking pissed! How much more of this shit am I expected to deal with?!?! I've lost out on half of my 30's, and I'll be goddamn lucky to make it anywhere into my 40's. Sure, I'm alive, but this is living? Having to shove gallons of poison into my veins every few months? Having to spend my summers puking up every last bit of chum? Wasting away until I look like a fuckin heroin addicted anorexic? Having to curl up in a mental haze while having some vague sense of the reality of the world around me? What the fuck did I ever do to you? You'd think I'd spent my life molesting puppies and painting apocryphal scenes with the entrails of human sacrifices. This totally sucks! SUCKS!!!!!!!!!!!
Whew! Ok, got that out.
I'm not about to tell you there was a "good" part of the news I got, because in reality there is none. Sure, it could have been worse, I could be writing my own eulogy, but the fact is that when you are told you still have cancer, after 3 years, and that you have to go back to the worst hell on earth that you have ever experienced, none of it is actually good. I won't refer to it as "good" news but for those of you who need to find the bright side, I offer you a few "facts": The cancer hasn't spread to organs, it looks like it's in the lymph nodes; the last time I took this particular chemo drug, it did a very good job on the tumors I had at the time; this most likely isn't new cancer, it's just cells that have avoided all the previous attempts at banishing them from my body.
I was having fun pretending I was well. The summer had started very well. There was trips down the Shore, a wedding, a visit from Dave, a new apartment, a new position at work. But now it stops. The brakes have been hit hard and I've got two weeks to skid into the abyss. I don't know how bad the chemo will be, but I'd put my money on "horrible". I'm sure by now you know the drill. When I'm too sick to care for myself, and you all know how much I LOVE that, I'll be staying at Dad's. I will, however, be doing everything in my power to spend as much time as possible in my own place.
Oh, yeah...forgot to mention, I'm also having some sort of "red hot iron jabbed into my stomach" pains that so far, doesn't seem to be directly related to my current infestation of carcinoma. It got so bad that I had to hit the ER on Saturday and get dosed up with dilaudin just so I could stop crying. I have to go see some other docs to figure out what the hell that is before I can start the chemo. Oh joy of joys!
That's it for now. I'm going to Kentucky tomorrow for a couple of days for work. I hope I can make it through that. Then it's back home on Thursday and I'll try and figure out where my head is at then. Should I party my last couple of weekends before chemo? That is, of course, if my body will actually let me. Or will I just retreat into myself, watch a lot of movies, play a lot of X-Box, and sulk quietly until they come to take me away? Yeah, I know what you want, but you know that sometimes I just have to be left alone. I'll figure it out later.
Monday, June 25, 2007
mmmmmmmm, forbidden doughnut
Well hello there happy reader, and welcome back to my life. I've been on a bit of a hiatus, but it's time to get back to this thing we call Billy's Colon. Since it's been a while, I have a few things to tell you about, so this one will be a doozy.
Let's start with recapping this last weekend; Dave...drinking...Jody and David and Eileen and Karen ... rehersal ... Tom and Maggie ... drinking ... Jon ... bikes ... drinking ... James ... wedding ... drinking ... Marci ... drinking ... pizza ... pass out ... 4 hour drive to a graduation/birthday party. There were lots of other people, too many names to remember though. Might have something to do with the drinking. Oh, it was a wonderful weekend.
'Lil Jody is a pal from back in the college days. This past Saturday she wed a lovely young bloke by the name of David and the two of them were kind enough to invite me to the festivities. It was a reunion of sorts; there were quite a few people who I haven't seen since those wonderful haze ridden days at Bethany. I was unbelievably happy to see them all again. Back in the day, some I hung out with, Jon, Tom and Maggie (though it took Tom a while to remember me, you sick sick bastard) and some who were passing acquaintances, but have now become quick and close friends, James and Marci. I really could go on and on about how great it was to be with these people and tell you about all the fun we had, but that would just take too long. Since this is my little place to talk about cancer, let me tell you a cancer story about this weekend.
Ok, so now I get it. I've mentioned a few times that I feel like sometimes people don't quite get that I have cancer, that when I'm well I feel like it's hard for people to understand what is going on. Well now I can see why, and Marci be her name. I'm sure that there had to be more than one occasion when our paths crossed during our tour of duty in the Ohio Valley, though neither of us could recall specific incidents. Our times there overlapped for about a semester, but as the school was at most, populated by 800 students, there simply must have been a party or event we both attended. She is a wonderfully happy, scary smart, and absolutely adorable woman! During our far too brief reunion this weekend she made me laugh, made me think, made me trickle a bit of beer through my nose. As if there wasn't enough about those couple of days that added quality to my life, those baby blues of hers would have been worth the trip alone. And oh, did I mention, Marci beat cancer!!!??!!!! Yup, 10 years my junior, and she has had to fight the fight as well. She has a fantastic attitude about her battle. She's strong, and optimistic, and has a great sense of humor about it. I know that there have been times, plenty of times, that she has been a mere shell, a hairless zombie tossing her cookies from dawn til dusk, but I never would have known as James, Dave, Marci and myself sat, laughing our asses off, eating pizza at 3 am, curbside, listening to the crash of the Atlantic. Surely Marci and I want this to be our lives, we don't want people to treat us differently, and it is a triumph that we can exist in a world where it is hard for someone to look at us and know our bodies have betrayed us. Marci, for the glimpse of what it is like to see me from the other side, and for so many other things you brought to me in that brief 24 hours, I thank you. I hope we don't wait another 10 years for pizza.
This weekend's harried whirlwind of activity has been indicative of my life for the last month. I have been hanging out down the shore with good friends, where I met a lovely bartender with whom I'm quite smitten. I've been very busy with a new position at work. I think I'm really going to enjoy the new job, though for now it is a bit daunting. Those of you who know me well, know that the challenge is what I'm going to enjoy the most. I've also been in the process of moving to a new apartment in Bayonne. I'm going to be back living all on my own. Though I do love Vinny like a brother, and for the most part I've lived without him for the last few months, I am looking forward to being on my own again.
But. Let me repeat that. BUT as was expected, there's a small roadblock on the horizon. I was having such a good time pretending that the last 3 years were nothing more than an illusion, and then today I took a peek at my calender for the next couple of weeks. Guess what's coming up folks. It's a CAT scan!!! That ugly little test that over the last few years has given me plenty of anxious and sleepless nights. The test will be on July 9th, which means I should get the results around the 13th. FRIDAY the 13th. I know, I know, that is a silly superstition, but I feel still worth mentioning. I'm not by any means convinced that the news on FRIDAY THE 13th will be bad, but I'm not counting it out either. I don't feel like I have any new growth, but I also didn't know for quite some time about the original tumor. I have plenty to keep my mind occupied for the next couple of weeks with moving and work, so perhaps the wait won't be too bad.
The last surgeries took a toll on my digestive tract, and I'm sure I'm not helping by living like I've never even had a cold, but that is me. You know that. You know me.
So, for now, that about wraps it up. Life is pretty good, even with the occasional stomach cramp. I'm going to try and write some more. Some more poetry, some more blogs, maybe some letters. I want you all to know that I always deeply appreciate that you check up on me!! I've been quite lucky to have this support system. I'll keep you updated on the next CT exam.
Billy
Let's start with recapping this last weekend; Dave...drinking...Jody and David and Eileen and Karen ... rehersal ... Tom and Maggie ... drinking ... Jon ... bikes ... drinking ... James ... wedding ... drinking ... Marci ... drinking ... pizza ... pass out ... 4 hour drive to a graduation/birthday party. There were lots of other people, too many names to remember though. Might have something to do with the drinking. Oh, it was a wonderful weekend.
'Lil Jody is a pal from back in the college days. This past Saturday she wed a lovely young bloke by the name of David and the two of them were kind enough to invite me to the festivities. It was a reunion of sorts; there were quite a few people who I haven't seen since those wonderful haze ridden days at Bethany. I was unbelievably happy to see them all again. Back in the day, some I hung out with, Jon, Tom and Maggie (though it took Tom a while to remember me, you sick sick bastard) and some who were passing acquaintances, but have now become quick and close friends, James and Marci. I really could go on and on about how great it was to be with these people and tell you about all the fun we had, but that would just take too long. Since this is my little place to talk about cancer, let me tell you a cancer story about this weekend.
Ok, so now I get it. I've mentioned a few times that I feel like sometimes people don't quite get that I have cancer, that when I'm well I feel like it's hard for people to understand what is going on. Well now I can see why, and Marci be her name. I'm sure that there had to be more than one occasion when our paths crossed during our tour of duty in the Ohio Valley, though neither of us could recall specific incidents. Our times there overlapped for about a semester, but as the school was at most, populated by 800 students, there simply must have been a party or event we both attended. She is a wonderfully happy, scary smart, and absolutely adorable woman! During our far too brief reunion this weekend she made me laugh, made me think, made me trickle a bit of beer through my nose. As if there wasn't enough about those couple of days that added quality to my life, those baby blues of hers would have been worth the trip alone. And oh, did I mention, Marci beat cancer!!!??!!!! Yup, 10 years my junior, and she has had to fight the fight as well. She has a fantastic attitude about her battle. She's strong, and optimistic, and has a great sense of humor about it. I know that there have been times, plenty of times, that she has been a mere shell, a hairless zombie tossing her cookies from dawn til dusk, but I never would have known as James, Dave, Marci and myself sat, laughing our asses off, eating pizza at 3 am, curbside, listening to the crash of the Atlantic. Surely Marci and I want this to be our lives, we don't want people to treat us differently, and it is a triumph that we can exist in a world where it is hard for someone to look at us and know our bodies have betrayed us. Marci, for the glimpse of what it is like to see me from the other side, and for so many other things you brought to me in that brief 24 hours, I thank you. I hope we don't wait another 10 years for pizza.
This weekend's harried whirlwind of activity has been indicative of my life for the last month. I have been hanging out down the shore with good friends, where I met a lovely bartender with whom I'm quite smitten. I've been very busy with a new position at work. I think I'm really going to enjoy the new job, though for now it is a bit daunting. Those of you who know me well, know that the challenge is what I'm going to enjoy the most. I've also been in the process of moving to a new apartment in Bayonne. I'm going to be back living all on my own. Though I do love Vinny like a brother, and for the most part I've lived without him for the last few months, I am looking forward to being on my own again.
But. Let me repeat that. BUT as was expected, there's a small roadblock on the horizon. I was having such a good time pretending that the last 3 years were nothing more than an illusion, and then today I took a peek at my calender for the next couple of weeks. Guess what's coming up folks. It's a CAT scan!!! That ugly little test that over the last few years has given me plenty of anxious and sleepless nights. The test will be on July 9th, which means I should get the results around the 13th. FRIDAY the 13th. I know, I know, that is a silly superstition, but I feel still worth mentioning. I'm not by any means convinced that the news on FRIDAY THE 13th will be bad, but I'm not counting it out either. I don't feel like I have any new growth, but I also didn't know for quite some time about the original tumor. I have plenty to keep my mind occupied for the next couple of weeks with moving and work, so perhaps the wait won't be too bad.
The last surgeries took a toll on my digestive tract, and I'm sure I'm not helping by living like I've never even had a cold, but that is me. You know that. You know me.
So, for now, that about wraps it up. Life is pretty good, even with the occasional stomach cramp. I'm going to try and write some more. Some more poetry, some more blogs, maybe some letters. I want you all to know that I always deeply appreciate that you check up on me!! I've been quite lucky to have this support system. I'll keep you updated on the next CT exam.
Billy
Thursday, May 17, 2007
That is the ugliest mustache I have ever seen
As many of you may know, today was D-day with my oncologist. I was to get the results of my latest cat scan and discuss the next round of chemo. I was not really looking forward to this. I haven't slept well in the last week. Plus I was having a really good time the last month and a half, being able to forget that I have cancer.
Well my friends and friendettes, great news!!! My scan came back clean. Now, this doesn't mean the cancer is gone, but it does mean that it's not growing anything new. Also, my doctor decided to hold off on the chemo. He feels that since I'm in no immediate need right now, and that I'm still healing from the last surgeries, and we don't want to use up all the drugs which would reduce their efficacy, that I should wait before we start anything. My next scan is in two months. Oh, we also decided that we would do scans every two months rather than every four so that we can catch the next tumors earlier.
So....I have at least a couple of more months to enjoy!!! And, if all goes well next scan, that should bring me all the way through the summer. This is going to be a GREAT summer!!! I can't wait to see everyone at Jody's wedding.
This has been a great week for news. On top of the cancer news, I found out I have a new position at work, which I really wanted and look forward to.
I'll post more, soon I hope. But for now I'm just going to be ridiculously happy and enjoy the time I have!
Well my friends and friendettes, great news!!! My scan came back clean. Now, this doesn't mean the cancer is gone, but it does mean that it's not growing anything new. Also, my doctor decided to hold off on the chemo. He feels that since I'm in no immediate need right now, and that I'm still healing from the last surgeries, and we don't want to use up all the drugs which would reduce their efficacy, that I should wait before we start anything. My next scan is in two months. Oh, we also decided that we would do scans every two months rather than every four so that we can catch the next tumors earlier.
So....I have at least a couple of more months to enjoy!!! And, if all goes well next scan, that should bring me all the way through the summer. This is going to be a GREAT summer!!! I can't wait to see everyone at Jody's wedding.
This has been a great week for news. On top of the cancer news, I found out I have a new position at work, which I really wanted and look forward to.
I'll post more, soon I hope. But for now I'm just going to be ridiculously happy and enjoy the time I have!
Thursday, May 10, 2007
Poem
It's been a while since I've written something. This popped out after a curious image flashed across my tv for a couple of seconds.
remember when our world was in black and white?
when the days were free
and we played at night
the streets our world
in children's sight
it all seemed big
and lamps shone bright
remember when our world was in black and white?
remember when our world was in black and white?
when grown-ups were giant
and we hid from their sight
we tumbled and laughed
and played polite
we phoned with cups
with string pulled tight
remember when our world was in black and white?
remember when our world was in black and white?
we worried over candy
used pillows to fight
we stressed over the loss
of a ball or a kite
we feared the closet
and kept on the light
remember when our world was in black and white?
remember when our world was in black and white?
next week was too distant
our birthday far from sight
santa took for ever
to visit us that night
there was no week, or month or year
there was just good night
remember when our world was in black and white?
remember when our world was in black and white?
we tumbled off our skates
or fell from short height
a simple hug and kiss
would make it all alright
finding that lost toy
would fill us with delight
remember when our world was in black and white?
remember when our world was in black and white?
our universe was in our home
the walls held us tight
our moms held the court
our dads played the knight
our sisters on our left
our brothers on our right
remember when our world was in black and white?
remember when our world was in black and white?
when the days were free
and we played at night
the streets our world
in children's sight
it all seemed big
and lamps shone bright
remember when our world was in black and white?
remember when our world was in black and white?
when grown-ups were giant
and we hid from their sight
we tumbled and laughed
and played polite
we phoned with cups
with string pulled tight
remember when our world was in black and white?
remember when our world was in black and white?
we worried over candy
used pillows to fight
we stressed over the loss
of a ball or a kite
we feared the closet
and kept on the light
remember when our world was in black and white?
remember when our world was in black and white?
next week was too distant
our birthday far from sight
santa took for ever
to visit us that night
there was no week, or month or year
there was just good night
remember when our world was in black and white?
remember when our world was in black and white?
we tumbled off our skates
or fell from short height
a simple hug and kiss
would make it all alright
finding that lost toy
would fill us with delight
remember when our world was in black and white?
remember when our world was in black and white?
our universe was in our home
the walls held us tight
our moms held the court
our dads played the knight
our sisters on our left
our brothers on our right
remember when our world was in black and white?
Monday, May 07, 2007
And here we go again...
For the last month or so I have been having the time of my life. It's been the healthiest point of the last two and a half years. I've gone to AC a couple of times, hung out with many friends, and even took a quick trip to Europe (see the previous blog). I've come to live my life in the spaces in between. In the times between chemo and surgery. In the time between hospitals and home rest. In the times between symptoms and not.
I had a cat scan today. The last one, in March, was clean. This one was a prelude to my next visit with my oncologist. He wants to know how things are looking before we start chemo again. Yup, that's right, chemo.
I've mentioned this before, but it bears repeating. Sometimes I think it's difficult for people who know me to understand the actual enormity of my disease. And believe me, it has nothing to do with them. It's just that I see them when I'm well, in those spaces, and when I'm well, it is difficult to imagine that there is anything wrong with me. Most people don't see me at the worst. The only indication they get of insidiousness of the cellular junkyard that is my abdominal cavity is this here blog. The fact is that I still, and pretty much will forever, have cancer. It doesn't look like it's going anywhere. I just have to keep beating it back and keep it a bay.
The next few days will bring some anxiety, a couple of sleepless nights, and more than a few fruit flavored Tums.
I should have the results by the end of this week, or the beginning of next. I'll let ya know what happens so stay tuned and I'll see you back here, same bat time, same bat channel.
I had a cat scan today. The last one, in March, was clean. This one was a prelude to my next visit with my oncologist. He wants to know how things are looking before we start chemo again. Yup, that's right, chemo.
I've mentioned this before, but it bears repeating. Sometimes I think it's difficult for people who know me to understand the actual enormity of my disease. And believe me, it has nothing to do with them. It's just that I see them when I'm well, in those spaces, and when I'm well, it is difficult to imagine that there is anything wrong with me. Most people don't see me at the worst. The only indication they get of insidiousness of the cellular junkyard that is my abdominal cavity is this here blog. The fact is that I still, and pretty much will forever, have cancer. It doesn't look like it's going anywhere. I just have to keep beating it back and keep it a bay.
The next few days will bring some anxiety, a couple of sleepless nights, and more than a few fruit flavored Tums.
I should have the results by the end of this week, or the beginning of next. I'll let ya know what happens so stay tuned and I'll see you back here, same bat time, same bat channel.
Oh, I love to go a'wandering
There will only be a little cancer in this post. I got back from Amsterdam last week and this is the tale. Some details have been omitted for brevity's sake. But all the good parts are still there.
Dougie and I arrived in Amsterdam on Saturday morning around 8am and promptly headed to a couple of cold Heinekens. Michele met us at the airport, and we all hung around waiting for other friends to get in from various locales. After we all gathered for a while and said our hellos, Dougie and I were off to another flight, this one to England. We went to Doug's parent's house, and dined with them. Saturday night was spent in the Tap, Dougie's local pub in Abingdon. As we sat around sipping pints, many people came and went and it seemed that every one of them knew Dougie. Every few minutes I could hear, "Dougie! Mate! How have you been?" or "Doug! Welcome back." I shall now and forever refer to him as Lord Dougie, Benevolent and Wise Ruler of Abingdon. Night one, over and out.
After a very late night out I caught a few z's and awoke early for our flight back to Amsterdam.
We relaxed for a little bit and then it was time to start the Queen's Day Marathon. We walked over to Leidseplein to meet up with the Group. The Group, by the way, is an eclectic gathering of anywhere between 20 and 30 people at any given time, representing about half a dozen countries. We've all been friends for years, some longer than others. It's been two years since I've seen most of them (thank you stupid tumor). I would love to tell you all about each and every one of them, but I want to keep this blog manageable. Trust me, they all ROCK! The hugs were given out like candy on Easter, the kisses thrown about liberally, the laughter rang throughout the streets, and the beer poured from every tap. I had to recount my cancer story more than a few times, but I didn't mind a bit. I was incredibly happy to see all these people again and to celebrate the life I have fought for over the couple of years. Later we all went for a lovely dinner at a Japanese hibachi restaurant. Following dinner was rounds at our regular haunt on Leidseplein, the Black and White. Somewhere around 2 in the morning, Dougie, Reede and I headed over to my favorite pub in all of Amsterdam, the Turnpike. There I met up with Swannet, one of the sexiest Dutch women I know (yes Ian, I'm aware she's your wife, but let's be honest here) and Henne, the owner and good friend. Dougie and I stumbled home around 3:30. Night two, in the bag.
Monday was Queen's Day. The Group met up at the Turnpike. Now, let me tell you a little something about the friendship that I share with this gang of people. I met most of them back in 2003, my first ever Queen's Day. Since then we have all remained close in spite of our geographical differences. The last time I saw them all was the following year, just before I got sick. In the time I've been absent, they have all kept in contact and followed my situation. The decision to gather at the Turnpike was for my consideration. Queen's Day is usually spent walking around the entire city visiting various pubs but knowing feeling that the usual journey might be a bit too much for me, and knowing that the Turnpike was my favorite spot, they all decided to hang out there for the day. On top of that, Dougie and Helen (my Australian Queen) arranged for everyone to sport these cool colon cancer tattoos!
As the day wound down we traveled to our traditional Queen's Day dinner spot, The Cafe de Klos. The ribs at the Klos are absolutely epic and worthy of a blog all their own, but for now I will leave it at that.
With our bellies full and the night upon us it was back to Leidseplein. Once again it was a few pints at the Black and White and then over to Bourbon Street. By the time we were partying at Bourbon Street, the gaggle was Reede, Dougie, Hassan and myself along with three very lovely Scottish girls who were friends of friends. We closed the club and Dougie, Reede and I found our way back to the Turnpike. It was somewhere around 4:30 when Dougie and I collapsed back at the flat. Night three, accomplished.
On Tuesday, Dougie and I decided we were not going to stay out too late. The weather was gorgeous and our day began with an Irish breakfast. Later that evening we returned to Leidseplein to catch a very important football match for Dougie's Liverpool squad. After a nail biter Liverpool emerged victorious and the night continued. There was dinner at an Indian restaurant and then back over to Bourbon Street. Dougie and I found our way back to the flat somewhere around 3. So much for not staying out late. Day four, said and done.
There are many other stories to tell. Many other things I could tell you about the wonderful people I was with, but as I've mentioned before, I want to keep this as brief as I can.
Here are two sites with some pictures from Queen's Day.
Gordon's Pictures
Reede's Pictures
Wednesday was the flight home. I miss that place already.
Dougie and I arrived in Amsterdam on Saturday morning around 8am and promptly headed to a couple of cold Heinekens. Michele met us at the airport, and we all hung around waiting for other friends to get in from various locales. After we all gathered for a while and said our hellos, Dougie and I were off to another flight, this one to England. We went to Doug's parent's house, and dined with them. Saturday night was spent in the Tap, Dougie's local pub in Abingdon. As we sat around sipping pints, many people came and went and it seemed that every one of them knew Dougie. Every few minutes I could hear, "Dougie! Mate! How have you been?" or "Doug! Welcome back." I shall now and forever refer to him as Lord Dougie, Benevolent and Wise Ruler of Abingdon. Night one, over and out.
After a very late night out I caught a few z's and awoke early for our flight back to Amsterdam.
We relaxed for a little bit and then it was time to start the Queen's Day Marathon. We walked over to Leidseplein to meet up with the Group. The Group, by the way, is an eclectic gathering of anywhere between 20 and 30 people at any given time, representing about half a dozen countries. We've all been friends for years, some longer than others. It's been two years since I've seen most of them (thank you stupid tumor). I would love to tell you all about each and every one of them, but I want to keep this blog manageable. Trust me, they all ROCK! The hugs were given out like candy on Easter, the kisses thrown about liberally, the laughter rang throughout the streets, and the beer poured from every tap. I had to recount my cancer story more than a few times, but I didn't mind a bit. I was incredibly happy to see all these people again and to celebrate the life I have fought for over the couple of years. Later we all went for a lovely dinner at a Japanese hibachi restaurant. Following dinner was rounds at our regular haunt on Leidseplein, the Black and White. Somewhere around 2 in the morning, Dougie, Reede and I headed over to my favorite pub in all of Amsterdam, the Turnpike. There I met up with Swannet, one of the sexiest Dutch women I know (yes Ian, I'm aware she's your wife, but let's be honest here) and Henne, the owner and good friend. Dougie and I stumbled home around 3:30. Night two, in the bag.
Monday was Queen's Day. The Group met up at the Turnpike. Now, let me tell you a little something about the friendship that I share with this gang of people. I met most of them back in 2003, my first ever Queen's Day. Since then we have all remained close in spite of our geographical differences. The last time I saw them all was the following year, just before I got sick. In the time I've been absent, they have all kept in contact and followed my situation. The decision to gather at the Turnpike was for my consideration. Queen's Day is usually spent walking around the entire city visiting various pubs but knowing feeling that the usual journey might be a bit too much for me, and knowing that the Turnpike was my favorite spot, they all decided to hang out there for the day. On top of that, Dougie and Helen (my Australian Queen) arranged for everyone to sport these cool colon cancer tattoos!
As the day wound down we traveled to our traditional Queen's Day dinner spot, The Cafe de Klos. The ribs at the Klos are absolutely epic and worthy of a blog all their own, but for now I will leave it at that.
With our bellies full and the night upon us it was back to Leidseplein. Once again it was a few pints at the Black and White and then over to Bourbon Street. By the time we were partying at Bourbon Street, the gaggle was Reede, Dougie, Hassan and myself along with three very lovely Scottish girls who were friends of friends. We closed the club and Dougie, Reede and I found our way back to the Turnpike. It was somewhere around 4:30 when Dougie and I collapsed back at the flat. Night three, accomplished.
On Tuesday, Dougie and I decided we were not going to stay out too late. The weather was gorgeous and our day began with an Irish breakfast. Later that evening we returned to Leidseplein to catch a very important football match for Dougie's Liverpool squad. After a nail biter Liverpool emerged victorious and the night continued. There was dinner at an Indian restaurant and then back over to Bourbon Street. Dougie and I found our way back to the flat somewhere around 3. So much for not staying out late. Day four, said and done.
There are many other stories to tell. Many other things I could tell you about the wonderful people I was with, but as I've mentioned before, I want to keep this as brief as I can.
Here are two sites with some pictures from Queen's Day.
Gordon's Pictures
Reede's Pictures
Wednesday was the flight home. I miss that place already.
Monday, April 23, 2007
Sophie seems a bit tweeked tonight
Today's good news/bad news about my cancer.
Good News: I gained a few pounds. I'm up to 205
Bad News: I have to shave my belly
After I left the hospital last, I still had open wounds from my surgery and they were bandaged. The bandages had to be changed on a daily basis until the wounds no longer needed to be packed with gauze. I had a nurse come and take care of this situation for the last month or so. The bandages were stretched across my belly and secured with tape. Let me fill you in on some information about tape that you may not be aware of. There seems to be two choices in medical tape. You can either have tape that holds the bandages on by adhering with super strength and winds up peeling off sections of your skin when you remove it. Or you can have tape that is gentle on the epidermis, but often falls off while you're sleeping, or walking, or sitting, or breathing. The last time I was on chemo, I lost some of my body hair. Not all of it, and not uniformly, but still there was some thinning. One of the places that saw a little less foliage was on my belly. Today I visited my surgeon and he said the wounds were healing well. I no longer need to have a nurse change the bandages, I can do it myself. I also don't need the bandaging to be as expansive, stretching two bandages across my gut and taping them down, I can go with simple 4x4s over the two remaining sites.
So how does this all tie together? Well, since you've decided to take the long road with me, I'll bring it all home now. When my belly hair was sparse, and the bandages wrapped around to my sides, the tape wasn't that difficult to adhere or remove. But now the hair has filled back in, and it's decided to sprout thickest right around the sites of the wounds. In a proactive attempt to mitigate the pain involved with bandage removal I'm going to shave. Nobody tells you this when you first get cancer. The doctors don't tell you. The support groups don't tell you. The books don't tell you. I'm going to put together a little class on all the stupid stuff people have to go through with cancer. Dave can help teach.
Oh, and on another good note, I'm going to Amsterdam on Friday!!!! One last big bash before the new round of chemo. That's life baby.
Good News: I gained a few pounds. I'm up to 205
Bad News: I have to shave my belly
After I left the hospital last, I still had open wounds from my surgery and they were bandaged. The bandages had to be changed on a daily basis until the wounds no longer needed to be packed with gauze. I had a nurse come and take care of this situation for the last month or so. The bandages were stretched across my belly and secured with tape. Let me fill you in on some information about tape that you may not be aware of. There seems to be two choices in medical tape. You can either have tape that holds the bandages on by adhering with super strength and winds up peeling off sections of your skin when you remove it. Or you can have tape that is gentle on the epidermis, but often falls off while you're sleeping, or walking, or sitting, or breathing. The last time I was on chemo, I lost some of my body hair. Not all of it, and not uniformly, but still there was some thinning. One of the places that saw a little less foliage was on my belly. Today I visited my surgeon and he said the wounds were healing well. I no longer need to have a nurse change the bandages, I can do it myself. I also don't need the bandaging to be as expansive, stretching two bandages across my gut and taping them down, I can go with simple 4x4s over the two remaining sites.
So how does this all tie together? Well, since you've decided to take the long road with me, I'll bring it all home now. When my belly hair was sparse, and the bandages wrapped around to my sides, the tape wasn't that difficult to adhere or remove. But now the hair has filled back in, and it's decided to sprout thickest right around the sites of the wounds. In a proactive attempt to mitigate the pain involved with bandage removal I'm going to shave. Nobody tells you this when you first get cancer. The doctors don't tell you. The support groups don't tell you. The books don't tell you. I'm going to put together a little class on all the stupid stuff people have to go through with cancer. Dave can help teach.
Oh, and on another good note, I'm going to Amsterdam on Friday!!!! One last big bash before the new round of chemo. That's life baby.
Friday, April 13, 2007
Welcome To The Monkey House
Two posts today. The first one will be quick.
Kurt Vonnegut passed away on Wednesday.
For many reasons he was one of my all time favorite authors. I would consider myself lucky if I could have even an ounce of his skill, creativity, insight, and wit.
I also shared a connection with my mother regarding Mr. Vonnegut. She always remembered my admiration for him. Many a Christmas there was a Vonnegut book in my stocking.
I will miss them both.
And now for a very long and in depth look at Billy's psychosis....
Kurt Vonnegut passed away on Wednesday.
For many reasons he was one of my all time favorite authors. I would consider myself lucky if I could have even an ounce of his skill, creativity, insight, and wit.
I also shared a connection with my mother regarding Mr. Vonnegut. She always remembered my admiration for him. Many a Christmas there was a Vonnegut book in my stocking.
I will miss them both.
And now for a very long and in depth look at Billy's psychosis....
They're always after me lucky charms
It's been a while since you've heard from me. I know, I know; you yearn for more pearls of wisdom clicked out on my keyboard. Well, I've been busy. Busy mostly trying to get back in the swing of life and pretending I don't have cancer until the next obvious 2x4 whacks my head. That will come in may when I resume chemo. blech
I've been working. I make it into my office three or four days a week, and work from home the other days. I've gone out once or twice with friends. I've got some plans on the horizon that don't include tumors or doctors or surgeries. But this blog isn't about that is it? No, it's about cancer, so let's get on with it.
Things were pretty quiet on the cancer front. I still have open wounds from my last surgery and I have a nurse come every other day to change the bandaging. I've seen my surgeon once since my last hospital stay. He said things were looking good. The wounds were healing well, and my early March CAT scan looked very good. My oncologist hasn't bugged me. Before I was discharged from the hospital he told me to come see him around April. He said he wanted me to get healthier and stronger before I see him and begin chemo again. I'm going to Amsterdam at the end of April, so I'm going to wait until May to see him. Oh yeah, did I mention I'm going to Amsterdam? Well I am. I am going to Amsterdam.
My brain hasn't had to deal with too much cancer stuff since I've made it back to my apartment. I've let it take a break from that. I'll be consumed with it soon enough. But, as many of you may know, I'm a bit of a tv junkie. Most nights are spent laying on the couch watching the tube. While many may see it as the lowest form of art, it is still indeed art. TV shows are stories. Stories written by talented people, told by talented people. Sure, not all of it, but still...
Last night on CSI New York they told a story of a group of young people who had been diagnosed with terminal diseases. These people had decided to commit suicide, each with a fantasy tint, rather than to let the diseases ravage them to an ugly and undignified death. I've dealt with this idea. Hell, I'm still dealing with it. I vacillate on the issue. I'll tell you more later. I have something else I'd like to tell you about today.
Tonight on my recorded episode of Crossing Jordan from last night (remember? I was watching CSI New York) the main character is going in for brain surgery. Right before the surgery there is a small moment when she starts to get anxious. This reminded me of something very real for me, and that's what I want to talk about. Before all of my surgeries, 5 or so in 3 years, I've had some time to think about them. I've had the wonderful luxury of being able to spend a few days stewing in a hospital bed before they sliced me open. For the most part I was calm. I never worried about what would happen during the surgery. There is no good in worrying. It solves nothing. Though, there is plenty to worry about. Simple surgeries, if there actually is such a thing, are still dangerous. I have been on the table for 15 plus hours at a pop. That's a lot of time for something unexpected to happen. But for those days before, I was relaxed. Until, right up until, they put me on the gurney to wheel me to the OR. Allow me a moment to try and explain to you the minutes for me right before the surgery.
The experience of the trip from my hospital room to the operating table is unlike any other I have met in my lifetime. At first it's calm, simply moving from my bed to the gurney. Then they begin to wheel me towards our destination. I tell my family everything is fine and that I love them. I lay back and watch the ceiling roll by. Hallway to hallway to elevator to hallway. Then we get to the door outside the OR suite. We have to make a brief stop so that the orderlies can don hair caps and feet covers. I start to feel a little nervous. They punch in the combination to the door and wheel me through. I begin to feel anxious. As the surgical teams mill around quickly and they bring me towards my operating room I begin to think about what I'm going to go through. The anesthesia, the cutting open, the removing of big chunks of my body. Everyone is walking around. They all seem very focused on what they are doing. The orderly passes me off to an OR nurse who tells me he/she will be my nurse and asks me some basic questions. I start to breath a little faster. My mind goes into overdrive. She brings me to the door of the room. She goes in to alert the team that I am here. For a minute or two, which feels like days, there is a brief calm. Right outside the room is quiet. It's a little bit off the fairway of the OR suite so there isn't much traffic. I take deep breaths. The world slows down. But then the door opens. In the room is the table, thin and long with wings where they will place my arms. This cross like table bares an eerie resemblance to the table used when they put a prisoner to death, if you can believe tv and the movies. My brain kicks back into hyperdrive. My breathing gets very very rapid. This is the point that is unlike any other, EVER, in my life. I'm terrified. I'm not sure what I'm scared about, but it is an overwhelming feeling. Then I begin to panic because I don't know why I'm scared. This in turn makes me even more afraid. It's a spiral, downward and quick. I try to tell the nurses that this is not normal for me. They try to calm me down as they attempt to move me onto the table. As they stretch out my arms I begin to ask for drugs, something to calm me down. There are lots of reassuring voices, one nurse holds my hand delicately as others strap my arms down. By now I'm probably hyperventilating and making no sense to anyone. It's that room. The lights, the machines, the table, it instills an anxiety that takes over my mind and body. My surgeon comes in and suddenly I'm calm again. I'm still afraid, very afraid, but I trust him with every cell of my being. He is a great guy who has always been open and honest with me. I tell him I'm nervous. I tell him I'm scared. He tells me to stop. The nurses finish strapping me it, wrapping my legs with some sort of medical apparatus. I can't stop the fear though. I get anxious again. I don't want to be there. I don't want to have surgery. I don't want to be me any more. Then there is the sweetest, loveliest, most reassuring voice the heavens have let loose upon this earth. It's my anesthesiologist telling me I'm about to get some pharmacological help. The plunger is pushed and I begin to quiet down. The edge is taken off. Not just the edge of the anxiety, but also the edge of my vision. My eyesight begins to blur. I'm scared, but I don't care any more. Then that lovely voice tells me that I'll be asleep soon. A darkness washes over me. My body goes limp. I'm out.
I'm bothered that this happens to me. I don't like that my mind can melt like this. I'm also bothered that I can remember it so vividly. My mind and body can recall this experience 100 percent. But if you ask me, I'll deny it all. I'm not afraid of anything.
I've been working. I make it into my office three or four days a week, and work from home the other days. I've gone out once or twice with friends. I've got some plans on the horizon that don't include tumors or doctors or surgeries. But this blog isn't about that is it? No, it's about cancer, so let's get on with it.
Things were pretty quiet on the cancer front. I still have open wounds from my last surgery and I have a nurse come every other day to change the bandaging. I've seen my surgeon once since my last hospital stay. He said things were looking good. The wounds were healing well, and my early March CAT scan looked very good. My oncologist hasn't bugged me. Before I was discharged from the hospital he told me to come see him around April. He said he wanted me to get healthier and stronger before I see him and begin chemo again. I'm going to Amsterdam at the end of April, so I'm going to wait until May to see him. Oh yeah, did I mention I'm going to Amsterdam? Well I am. I am going to Amsterdam.
My brain hasn't had to deal with too much cancer stuff since I've made it back to my apartment. I've let it take a break from that. I'll be consumed with it soon enough. But, as many of you may know, I'm a bit of a tv junkie. Most nights are spent laying on the couch watching the tube. While many may see it as the lowest form of art, it is still indeed art. TV shows are stories. Stories written by talented people, told by talented people. Sure, not all of it, but still...
Last night on CSI New York they told a story of a group of young people who had been diagnosed with terminal diseases. These people had decided to commit suicide, each with a fantasy tint, rather than to let the diseases ravage them to an ugly and undignified death. I've dealt with this idea. Hell, I'm still dealing with it. I vacillate on the issue. I'll tell you more later. I have something else I'd like to tell you about today.
Tonight on my recorded episode of Crossing Jordan from last night (remember? I was watching CSI New York) the main character is going in for brain surgery. Right before the surgery there is a small moment when she starts to get anxious. This reminded me of something very real for me, and that's what I want to talk about. Before all of my surgeries, 5 or so in 3 years, I've had some time to think about them. I've had the wonderful luxury of being able to spend a few days stewing in a hospital bed before they sliced me open. For the most part I was calm. I never worried about what would happen during the surgery. There is no good in worrying. It solves nothing. Though, there is plenty to worry about. Simple surgeries, if there actually is such a thing, are still dangerous. I have been on the table for 15 plus hours at a pop. That's a lot of time for something unexpected to happen. But for those days before, I was relaxed. Until, right up until, they put me on the gurney to wheel me to the OR. Allow me a moment to try and explain to you the minutes for me right before the surgery.
The experience of the trip from my hospital room to the operating table is unlike any other I have met in my lifetime. At first it's calm, simply moving from my bed to the gurney. Then they begin to wheel me towards our destination. I tell my family everything is fine and that I love them. I lay back and watch the ceiling roll by. Hallway to hallway to elevator to hallway. Then we get to the door outside the OR suite. We have to make a brief stop so that the orderlies can don hair caps and feet covers. I start to feel a little nervous. They punch in the combination to the door and wheel me through. I begin to feel anxious. As the surgical teams mill around quickly and they bring me towards my operating room I begin to think about what I'm going to go through. The anesthesia, the cutting open, the removing of big chunks of my body. Everyone is walking around. They all seem very focused on what they are doing. The orderly passes me off to an OR nurse who tells me he/she will be my nurse and asks me some basic questions. I start to breath a little faster. My mind goes into overdrive. She brings me to the door of the room. She goes in to alert the team that I am here. For a minute or two, which feels like days, there is a brief calm. Right outside the room is quiet. It's a little bit off the fairway of the OR suite so there isn't much traffic. I take deep breaths. The world slows down. But then the door opens. In the room is the table, thin and long with wings where they will place my arms. This cross like table bares an eerie resemblance to the table used when they put a prisoner to death, if you can believe tv and the movies. My brain kicks back into hyperdrive. My breathing gets very very rapid. This is the point that is unlike any other, EVER, in my life. I'm terrified. I'm not sure what I'm scared about, but it is an overwhelming feeling. Then I begin to panic because I don't know why I'm scared. This in turn makes me even more afraid. It's a spiral, downward and quick. I try to tell the nurses that this is not normal for me. They try to calm me down as they attempt to move me onto the table. As they stretch out my arms I begin to ask for drugs, something to calm me down. There are lots of reassuring voices, one nurse holds my hand delicately as others strap my arms down. By now I'm probably hyperventilating and making no sense to anyone. It's that room. The lights, the machines, the table, it instills an anxiety that takes over my mind and body. My surgeon comes in and suddenly I'm calm again. I'm still afraid, very afraid, but I trust him with every cell of my being. He is a great guy who has always been open and honest with me. I tell him I'm nervous. I tell him I'm scared. He tells me to stop. The nurses finish strapping me it, wrapping my legs with some sort of medical apparatus. I can't stop the fear though. I get anxious again. I don't want to be there. I don't want to have surgery. I don't want to be me any more. Then there is the sweetest, loveliest, most reassuring voice the heavens have let loose upon this earth. It's my anesthesiologist telling me I'm about to get some pharmacological help. The plunger is pushed and I begin to quiet down. The edge is taken off. Not just the edge of the anxiety, but also the edge of my vision. My eyesight begins to blur. I'm scared, but I don't care any more. Then that lovely voice tells me that I'll be asleep soon. A darkness washes over me. My body goes limp. I'm out.
I'm bothered that this happens to me. I don't like that my mind can melt like this. I'm also bothered that I can remember it so vividly. My mind and body can recall this experience 100 percent. But if you ask me, I'll deny it all. I'm not afraid of anything.
Friday, March 23, 2007
Come in here dear boy, have a cigar...
I've been doing a lot of thinking lately, well ok, I always do a lot of thinking. I have some ideas about immortality, but I'm going to save them for the next entry. Today will simply be a cancer update.
I'm better. I'm not great, but I'm certainly better than, say, a month ago. I've spent the last few weeks recouping at dad's. This week I was able to drag my ass in to my office twice. I'm not able to stand a full day, but still, it's a step. I'm thin, very thin, disgustingly thin. I came out of the hospital 190 pounds, and three weeks later I'm still 190 pounds. I don't like being this thin. I feel like all I've done for the last few weeks is eat, but still no weight. My sister reminded me, as she often has to do since my brain seems to be nothing more than a giant sieve, that this is how it always happens. I stay thin for 4 or 5 weeks, and then BAM, lots of weight. I guess we'll have to see.
I had a ct scan last week. The scan was to check on how the infection was doing. I was on IV antibiotics at home, and the doctor wouldn't stop them until a ct scan showed him I was clean. Well...I'm clean. No more infection. So that's good news! I went to see my surgeon last Monday. He said my surgical wounds are healing very well, and it should only be a few more weeks before they're all closed up. Also, he took a glance at the ct scan and told me that my innards look to be in good shape. There are no obvious signs of growth. Now he wouldn't say the words, that is for my oncologist, but what he hinted at is that there are no signs of cancer. Yes, this is good news. BUT, let's temper it with a bit of reality. I've had clean ct scans in the last couple of years. They are not the end-all-be-all for diagnosing cancer, especially my cancer. As we all know by now, I will always have cancer, it's just going to be a matter of degree. I am going to see my oncologist in April and we'll find out more then.
Tomorrow, as some of you may or may not know, is my birthday. I'll be 38. 40 is just around the damn corner. For my birthday.........I'm going home!!!! I'm moving back into my own apartment tomorrow, after a 3 and 1/2 month hiatus. I'm really looking forward to it. Some friends are going to come by and help me settle back in. I'll make them some dinner and then we'll just relax at my place. Sure 10 years ago this would not have passed for a birthday party, but then again I was a totally different person, with about 100 more pounds on me. (did I mention that I'm very thin?)
There are a lot of things going on for me right now. Work is changing, I've got some trips coming up, and then there's always the cancer. I'm pretty sure my next couple of blogs will be a bit more profound and introspective, so perhaps you'll want to skip those.
I'm better. I'm not great, but I'm certainly better than, say, a month ago. I've spent the last few weeks recouping at dad's. This week I was able to drag my ass in to my office twice. I'm not able to stand a full day, but still, it's a step. I'm thin, very thin, disgustingly thin. I came out of the hospital 190 pounds, and three weeks later I'm still 190 pounds. I don't like being this thin. I feel like all I've done for the last few weeks is eat, but still no weight. My sister reminded me, as she often has to do since my brain seems to be nothing more than a giant sieve, that this is how it always happens. I stay thin for 4 or 5 weeks, and then BAM, lots of weight. I guess we'll have to see.
I had a ct scan last week. The scan was to check on how the infection was doing. I was on IV antibiotics at home, and the doctor wouldn't stop them until a ct scan showed him I was clean. Well...I'm clean. No more infection. So that's good news! I went to see my surgeon last Monday. He said my surgical wounds are healing very well, and it should only be a few more weeks before they're all closed up. Also, he took a glance at the ct scan and told me that my innards look to be in good shape. There are no obvious signs of growth. Now he wouldn't say the words, that is for my oncologist, but what he hinted at is that there are no signs of cancer. Yes, this is good news. BUT, let's temper it with a bit of reality. I've had clean ct scans in the last couple of years. They are not the end-all-be-all for diagnosing cancer, especially my cancer. As we all know by now, I will always have cancer, it's just going to be a matter of degree. I am going to see my oncologist in April and we'll find out more then.
Tomorrow, as some of you may or may not know, is my birthday. I'll be 38. 40 is just around the damn corner. For my birthday.........I'm going home!!!! I'm moving back into my own apartment tomorrow, after a 3 and 1/2 month hiatus. I'm really looking forward to it. Some friends are going to come by and help me settle back in. I'll make them some dinner and then we'll just relax at my place. Sure 10 years ago this would not have passed for a birthday party, but then again I was a totally different person, with about 100 more pounds on me. (did I mention that I'm very thin?)
There are a lot of things going on for me right now. Work is changing, I've got some trips coming up, and then there's always the cancer. I'm pretty sure my next couple of blogs will be a bit more profound and introspective, so perhaps you'll want to skip those.
Monday, March 12, 2007
Jesse is a friend, you know he's been a good friend of mine
As I've mentioned before, cancer brings with it a wide variety of other physical and emotional tribulations. During my most recent sojourn at the Hotel De Hackensack I experienced two physical events for the first time; I passed out, and I hallucinated.
During the last week I was in the hospital, on Wednesday my doctor told me I would be discharged on Friday. When Friday rolled around, I was told I couldn't leave, maybe Saturday. On Saturday I was told I couldn't leave, maybe Sunday. On Sunday, blah blah blah, until I was discharged on Tuesday. The reason the carrot was yanked away so many times was because the level of a drug I regularly take called Coumadin, was not high enough. I take this drug to prevent blood clots, but when I'm in the hospital for surgery, they need to stop this medicine. Blood clotting is very important when it comes to surgery. Playing the "not today, maybe tomorrow" game has happened every time I've been in for surgery. Knowing this would be an issue, I tried to make it a point to let all my doctors know that we needed to start the Coumadin again early, so I wouldn't have to delay my discharge. Of course, nobody payed attention and so I spent an extra 4 days. Sure, 4 days doesn't seem all that long, but when you consider that I was laying in that bed for 2 months, those 4 days felt like an eternity. On that Sunday, a physical therapist came by to walk with me. Walking is a difficult process after you've been supine for 2 months, and so I needed therapy for it. Most times it's a pleasant enough experience. The therapists are nice, and it does feel good to get out of the room, if even for just a couple of minutes. But on that day I was pissed and determined to show everyone that I was fine; fine enough to be sent home and fine enough to take care of myself. The therapist wanted to try some steps, so I jumped out of bed and made my way, grunting and mumbling under my breath, to the stairwell. I went through the door, I looked up at the top of the staircase and started to feel light headed. I grabbed for the hand rail as I heard the therapist calling my name, yelling, asking if I was ok. The hallway went dark. The next thing I knew there were about 10 people all around me, the therapist was waving smelling salts under my nose, and a large orderly was trying to get me to sit in a wheel chair. I passed out. Not your "been drinking since 11 this morning and need to nap" pass out, but actually passed out. This is not something I recommend.
The other event was when I hallucinated. I'm not talking about when you've been sitting at the bar, it's now 3 am, the bartender is ushering the glasses through their three sink dance, the bouncer is flipping over the bar stools and placing them atop the bar so that the cleaning crew can have full and clear access to mop the floor and clean the grit and grime you and your friends trod around in all night, and OH MY GOD that chick at the end of the bar is the hottest thing ever!! I'm talking about my mind telling me that my sister is sitting right beside me, discussing the most recent insanity of our father, while in reality she is most likely tired and fed up at the end of her shift, and on her way home. The doctors at Hackensack, and probably other hospitals as well, are very concerned with a patient's pain. They feel that pain intrudes on the body's natural process of healing, so they are very generous with pain medication. After my surgery they placed me on a PCA (patient controlled analgesia) iv pump. The pump has a little button, which the patient is supposed to press to deliver the pain medicine. Depending on an assortment of factors, the pump is set to only allow a certain amount of medicine to be dispensed in a certain time period. The first few times I had this pca, the drug of choice was morphine. My sister said that I had a reaction the last time I had the morphine (it's these parts of my recovery, right after the surgery, that I have trouble remembering so if Chrissy says it's so, it's so) so this time they hooked me up to a drug called dilaudid. I stayed on the pca pump about two days too long. The last couple of days, I would be in the middle of a conversation with my sister, or my father, or one of my friends, my hands flying around in mid sentence, and I would wake up, clear up really, and realize that nobody was there. These weren't dreams, I wasn't asleep. The presence of another person was incredibly real. My mind vaguely understood what was going on and I had to force myself to not press that button unless I truly needed it. After a couple of days of lower dosing, I was clear enough to let people know that it may have been time to change off the dilaudid.
And they said cancer wouldn't be fun...
During the last week I was in the hospital, on Wednesday my doctor told me I would be discharged on Friday. When Friday rolled around, I was told I couldn't leave, maybe Saturday. On Saturday I was told I couldn't leave, maybe Sunday. On Sunday, blah blah blah, until I was discharged on Tuesday. The reason the carrot was yanked away so many times was because the level of a drug I regularly take called Coumadin, was not high enough. I take this drug to prevent blood clots, but when I'm in the hospital for surgery, they need to stop this medicine. Blood clotting is very important when it comes to surgery. Playing the "not today, maybe tomorrow" game has happened every time I've been in for surgery. Knowing this would be an issue, I tried to make it a point to let all my doctors know that we needed to start the Coumadin again early, so I wouldn't have to delay my discharge. Of course, nobody payed attention and so I spent an extra 4 days. Sure, 4 days doesn't seem all that long, but when you consider that I was laying in that bed for 2 months, those 4 days felt like an eternity. On that Sunday, a physical therapist came by to walk with me. Walking is a difficult process after you've been supine for 2 months, and so I needed therapy for it. Most times it's a pleasant enough experience. The therapists are nice, and it does feel good to get out of the room, if even for just a couple of minutes. But on that day I was pissed and determined to show everyone that I was fine; fine enough to be sent home and fine enough to take care of myself. The therapist wanted to try some steps, so I jumped out of bed and made my way, grunting and mumbling under my breath, to the stairwell. I went through the door, I looked up at the top of the staircase and started to feel light headed. I grabbed for the hand rail as I heard the therapist calling my name, yelling, asking if I was ok. The hallway went dark. The next thing I knew there were about 10 people all around me, the therapist was waving smelling salts under my nose, and a large orderly was trying to get me to sit in a wheel chair. I passed out. Not your "been drinking since 11 this morning and need to nap" pass out, but actually passed out. This is not something I recommend.
The other event was when I hallucinated. I'm not talking about when you've been sitting at the bar, it's now 3 am, the bartender is ushering the glasses through their three sink dance, the bouncer is flipping over the bar stools and placing them atop the bar so that the cleaning crew can have full and clear access to mop the floor and clean the grit and grime you and your friends trod around in all night, and OH MY GOD that chick at the end of the bar is the hottest thing ever!! I'm talking about my mind telling me that my sister is sitting right beside me, discussing the most recent insanity of our father, while in reality she is most likely tired and fed up at the end of her shift, and on her way home. The doctors at Hackensack, and probably other hospitals as well, are very concerned with a patient's pain. They feel that pain intrudes on the body's natural process of healing, so they are very generous with pain medication. After my surgery they placed me on a PCA (patient controlled analgesia) iv pump. The pump has a little button, which the patient is supposed to press to deliver the pain medicine. Depending on an assortment of factors, the pump is set to only allow a certain amount of medicine to be dispensed in a certain time period. The first few times I had this pca, the drug of choice was morphine. My sister said that I had a reaction the last time I had the morphine (it's these parts of my recovery, right after the surgery, that I have trouble remembering so if Chrissy says it's so, it's so) so this time they hooked me up to a drug called dilaudid. I stayed on the pca pump about two days too long. The last couple of days, I would be in the middle of a conversation with my sister, or my father, or one of my friends, my hands flying around in mid sentence, and I would wake up, clear up really, and realize that nobody was there. These weren't dreams, I wasn't asleep. The presence of another person was incredibly real. My mind vaguely understood what was going on and I had to force myself to not press that button unless I truly needed it. After a couple of days of lower dosing, I was clear enough to let people know that it may have been time to change off the dilaudid.
And they said cancer wouldn't be fun...
Thursday, March 01, 2007
Oh my! Where has all the time gone?
Yes, my dear friends, it has been a while since I've let you all in on my condition. Yes, this blog was specifically set up for just that purpose. Yes, I even had internet access while in the hospital. I'm just a bad friend is all.
Last you heard, I was going to be in the hospital for a couple of weeks. Well, let me tell you something; that did not really go as planned. Turns out that all the vomitting I was doing may not have been just a reaction to my chemo. The doctors took some pictures and checked the jam-cam in my colon and found a blockage. After some non-invasive attempts to relieve the blockage didn't work, it was time to call in the surgeon. I'm pretty sure I've said this before, but it bears repeating; my surgeon totally rocks!!! I think if he had gone to Bethany, or any of the other fine institutions of higher learning which I attended, we may have hung out and gotten drunk together. My surgeon said that since they were going to open me up to remove the blockage he might as well go ahead and take out all the cancery stuff. And that's what he did. He removed what was left of the tumor, (quick side note, after only two treatments of the new chemo, that tumor had already shrunk in half) lymph nodes, some intestine, and some other areas that they suspected some cancer cells might be. All my margins came back clean. All of this means that there are no obvious signs of cancer in my abdomen at this time. Now, before you go all jump-for-joy on me, just know that it doesn't mean I'm in remission. There may still be some cells swimming around somewhere, which has been the case before. Only a pet scan will show for sure. That's coming up soon. Also, if you've been following along you already know that I'll never really get rid of the cancer, but will be able to live with it in check. That should have been it, I should have been out of the hospital by the end of January, but of course my body has to be difficult.
Right around the day I was supposed to go home, I started spiking fevers and feeling generally run down. Turns out I developed an infection in the surgical sites. This has happened before, so now my surgeon says "this is just how your body deals with it", it's an inevitability. This meant another surgery, to clean it out, and a few more weeks in the hospital, which works out to be about 150 more hours of the food network. I can't really eat right now, but I have a million recipes I want to try out.
February came and went while I was flat on my back in the post-surge ward. I finally made it out of there on the 27th. I'm at my dad's right now, recovering. I still have open wounds from the last surgery and I have to take iv antibiotics about 4 times a day. I'm also pretty weak and probably under 200 pounds. Two months in the hospital will do that to ya. I'm getting a little better every day, and should be back to some sense of normalcy in two or three weeks, which is cool since I have a birthday coming up right around that time.
That's the long and short of it my friends. My last two months in a nutshell. There is some work to be done. I need to get my strength back and still have to go back for some chemo, but the year is looking up. I am going to try and hit Europe in the spring, there's a couple of weddings this summer, and maybe a trip to San Fran in the fall. I've had my beat down mental days, but as always I have a slightly skewed optimism. I love all of you, and thanks for all the cards/flowers/balloons/candy/phone calls/text messages/emails!!! I'll hit ya with some more cancer tainted wisdom soon.
Last you heard, I was going to be in the hospital for a couple of weeks. Well, let me tell you something; that did not really go as planned. Turns out that all the vomitting I was doing may not have been just a reaction to my chemo. The doctors took some pictures and checked the jam-cam in my colon and found a blockage. After some non-invasive attempts to relieve the blockage didn't work, it was time to call in the surgeon. I'm pretty sure I've said this before, but it bears repeating; my surgeon totally rocks!!! I think if he had gone to Bethany, or any of the other fine institutions of higher learning which I attended, we may have hung out and gotten drunk together. My surgeon said that since they were going to open me up to remove the blockage he might as well go ahead and take out all the cancery stuff. And that's what he did. He removed what was left of the tumor, (quick side note, after only two treatments of the new chemo, that tumor had already shrunk in half) lymph nodes, some intestine, and some other areas that they suspected some cancer cells might be. All my margins came back clean. All of this means that there are no obvious signs of cancer in my abdomen at this time. Now, before you go all jump-for-joy on me, just know that it doesn't mean I'm in remission. There may still be some cells swimming around somewhere, which has been the case before. Only a pet scan will show for sure. That's coming up soon. Also, if you've been following along you already know that I'll never really get rid of the cancer, but will be able to live with it in check. That should have been it, I should have been out of the hospital by the end of January, but of course my body has to be difficult.
Right around the day I was supposed to go home, I started spiking fevers and feeling generally run down. Turns out I developed an infection in the surgical sites. This has happened before, so now my surgeon says "this is just how your body deals with it", it's an inevitability. This meant another surgery, to clean it out, and a few more weeks in the hospital, which works out to be about 150 more hours of the food network. I can't really eat right now, but I have a million recipes I want to try out.
February came and went while I was flat on my back in the post-surge ward. I finally made it out of there on the 27th. I'm at my dad's right now, recovering. I still have open wounds from the last surgery and I have to take iv antibiotics about 4 times a day. I'm also pretty weak and probably under 200 pounds. Two months in the hospital will do that to ya. I'm getting a little better every day, and should be back to some sense of normalcy in two or three weeks, which is cool since I have a birthday coming up right around that time.
That's the long and short of it my friends. My last two months in a nutshell. There is some work to be done. I need to get my strength back and still have to go back for some chemo, but the year is looking up. I am going to try and hit Europe in the spring, there's a couple of weddings this summer, and maybe a trip to San Fran in the fall. I've had my beat down mental days, but as always I have a slightly skewed optimism. I love all of you, and thanks for all the cards/flowers/balloons/candy/phone calls/text messages/emails!!! I'll hit ya with some more cancer tainted wisdom soon.
Thursday, January 25, 2007
What was that about the best laid plans?
and now it's January 25th and I'm still in the hospital. Things keep going up and down. I was going to write about some other difficulties dealing with cancer, but I'm tired so I'm just going to leave this little update. I'm still not sure when I'm getting out of here.
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Friday, January 19, 2007
Clinically speaking...
Well all, it's been a busy busy month for me. Just to get you caught up, I'll forgo any of my usual charm and wit, and will go with a more straight forward approach.
Dec 27th, 2006 - (threw up) I visited my doctor for my first treatment of the chemotherapy Irinotican
Dec 28th, 2006 - (threw up) Any substance that might have once been food has now turned into pure liquid and is heading at full speed towards the nearest exit.
Dec 31st, 2006 - (threw up) A fearless band of British explorers brave outrageous winter weather and the Garden State Parkway in order to chime in the new year by watching me sink into my couch in between volatile visits to the bathroom.
Jan 3rd, 2007 - (threw up) I return for my second round of chemo. My doctor said "If you were so sick, why didn't you call me?" to which I replied "I thought this was just how the chemo was going to be." My doctor looked down, shook his head, and mumbled "idiot". Later that day the doctor admitted me to the hospital for dehydration.
Jan 6th, 2007 - (threw up) I'm re hydrated and keeping down most of my food, so they let me out of the hospital. I head to my dad's house to chill until my next chemo.
Jan 10th, 2007 - (threw up) I went back for round three of the chemo. My body, even after having spent that time in the hospital, was still not ready for chemo. I had not stopped throwing up since I left the hospital and my bowels have been flowing like the Hudson. My doctor said he wouldn't give me chemo because my body couldn't handle it just then. He also felt that there had to be another reason the vomiting and diarrhea. He said I needed to rehydrate again and also have a ct scan. I could do them on and out patient basis, or he could admit me. I decided to try the outpatient route.
Jan 11th, 2007 - (threw up) I wake up to go have my ct scan but my body is just exhausted and I don't have enough energy to walk to the front door. I decided to go with my other option; get admitted back into the hospital. Later that evening I'm admitted and had a ct scan which revealed a blockage in my colon.
Jan 13th, 2007 A colonoscopy shows that the blockage is in part because there is a lot of swelling in my colon, most likely from the chemo. The doctor also finds 2 ulcers, again probably from the chemo.
Over the next few days I've gotten a little better, then a little worse, then a little better. I also got another round of chemo on the 17th. It looks as though things are leveling out. I'll probably be home tomorrow. With a few medicinal adjuncts, I should be able to return to a chemo schedule where I'm only sick for a few days and then I have good days in which to live. We shall see.
Dec 27th, 2006 - (threw up) I visited my doctor for my first treatment of the chemotherapy Irinotican
Dec 28th, 2006 - (threw up) Any substance that might have once been food has now turned into pure liquid and is heading at full speed towards the nearest exit.
Dec 31st, 2006 - (threw up) A fearless band of British explorers brave outrageous winter weather and the Garden State Parkway in order to chime in the new year by watching me sink into my couch in between volatile visits to the bathroom.
Jan 3rd, 2007 - (threw up) I return for my second round of chemo. My doctor said "If you were so sick, why didn't you call me?" to which I replied "I thought this was just how the chemo was going to be." My doctor looked down, shook his head, and mumbled "idiot". Later that day the doctor admitted me to the hospital for dehydration.
Jan 6th, 2007 - (threw up) I'm re hydrated and keeping down most of my food, so they let me out of the hospital. I head to my dad's house to chill until my next chemo.
Jan 10th, 2007 - (threw up) I went back for round three of the chemo. My body, even after having spent that time in the hospital, was still not ready for chemo. I had not stopped throwing up since I left the hospital and my bowels have been flowing like the Hudson. My doctor said he wouldn't give me chemo because my body couldn't handle it just then. He also felt that there had to be another reason the vomiting and diarrhea. He said I needed to rehydrate again and also have a ct scan. I could do them on and out patient basis, or he could admit me. I decided to try the outpatient route.
Jan 11th, 2007 - (threw up) I wake up to go have my ct scan but my body is just exhausted and I don't have enough energy to walk to the front door. I decided to go with my other option; get admitted back into the hospital. Later that evening I'm admitted and had a ct scan which revealed a blockage in my colon.
Jan 13th, 2007 A colonoscopy shows that the blockage is in part because there is a lot of swelling in my colon, most likely from the chemo. The doctor also finds 2 ulcers, again probably from the chemo.
Over the next few days I've gotten a little better, then a little worse, then a little better. I also got another round of chemo on the 17th. It looks as though things are leveling out. I'll probably be home tomorrow. With a few medicinal adjuncts, I should be able to return to a chemo schedule where I'm only sick for a few days and then I have good days in which to live. We shall see.
Friday, January 05, 2007
You put the "lida" in "holidays"
When I was a child, holidays bore the full and epic importance of the events they commemorate. Valentine's Day was a celebration of love. Easter was the essence of my religion, remembering the resurrection of Jesus. In adolescence and young adulthood, the year was clearly divided in terms of school. Holidays became bold lines of demarcation. The summer began with Memorial Day, summer camp was in full swing by Independence Day, and Labor Day brought us back to academics. As I got older, holidays afforded an opportunity to revisit youth. Halloween was a time dress up in silly costumes, Thanksgiving a chance to revisit my Alma mater for the traditional football game. In adulthood Christmas had taken on it's more secular face and become a time for my family to gather together. New Year's Eve, some time ago, had become my first grown up holiday as I was able to invite my friends into my home to celebrate.
If you want to see the true meaning of holidays, take a walk down to the corner shop, pick yourself up some cancer, and view the world through tumor colored glasses. Holidays loose the holi and are just days.
This Christmas was wonderful because I got to spend some time with my family, including the newest member, my cousin's son Jonah. I love my family very much. Sitting the whole clan around the kitchen table, laughing and talking, snacking, while Aunt Frannie finishes cooking the day's meal is a comforting event that I look forward to every time we gather. The meal was delicious, as always. It was absolutely wonderful. But, even as we passed out our gifts to each other, my mind was two days away, the first day of my new chemo.
For the third December in a row, the end of the year brought with it not promises of new and exciting opportunities wit a fresh year, but instead the spectre of cancer and a new round of chemo. This year I began on December 28th. My doctor felt confident that this chemo would not make me too sick. Perhaps there would be a little nausea and some diarrhea, but nothing too debilitating. I also spoke with several people who had taken this drug, and they suggested the same outcome. It was not to be. By the next day, even with plenty of drugs to help me, I was vomiting on a daily basis.
New Year's Eve was a quiet event. Dougie and Naomi took pity on my ridiculously sick body, and spent the evening perched in my living room, watching me sleep, bitch and moan, and try to put some food down my gullet only to toss it all up at some point. I was passed out as 2006 gave way to 2007, curled up on my couch beneath layers of blankets as Doug and Naomi blew noise makers, wore silly hats, popped corks, danced around my living room, and cheered in the new year. Alright, that might have just been my delusion, I was passed out! The truth is that Doug was playing a video game on his laptop and I think Naomi was flipping through tv channels. Who has better friends?
Things haven't been much better this week. I'm actually writing this from a hospital bed. More on that later.
If you want to see the true meaning of holidays, take a walk down to the corner shop, pick yourself up some cancer, and view the world through tumor colored glasses. Holidays loose the holi and are just days.
This Christmas was wonderful because I got to spend some time with my family, including the newest member, my cousin's son Jonah. I love my family very much. Sitting the whole clan around the kitchen table, laughing and talking, snacking, while Aunt Frannie finishes cooking the day's meal is a comforting event that I look forward to every time we gather. The meal was delicious, as always. It was absolutely wonderful. But, even as we passed out our gifts to each other, my mind was two days away, the first day of my new chemo.
For the third December in a row, the end of the year brought with it not promises of new and exciting opportunities wit a fresh year, but instead the spectre of cancer and a new round of chemo. This year I began on December 28th. My doctor felt confident that this chemo would not make me too sick. Perhaps there would be a little nausea and some diarrhea, but nothing too debilitating. I also spoke with several people who had taken this drug, and they suggested the same outcome. It was not to be. By the next day, even with plenty of drugs to help me, I was vomiting on a daily basis.
New Year's Eve was a quiet event. Dougie and Naomi took pity on my ridiculously sick body, and spent the evening perched in my living room, watching me sleep, bitch and moan, and try to put some food down my gullet only to toss it all up at some point. I was passed out as 2006 gave way to 2007, curled up on my couch beneath layers of blankets as Doug and Naomi blew noise makers, wore silly hats, popped corks, danced around my living room, and cheered in the new year. Alright, that might have just been my delusion, I was passed out! The truth is that Doug was playing a video game on his laptop and I think Naomi was flipping through tv channels. Who has better friends?
Things haven't been much better this week. I'm actually writing this from a hospital bed. More on that later.
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