We're here in beautiful Lubbock, Tx. If you want to know just how beautiful it is, go to the Wasco Brothers web page (www.wascobrothers.com), then go to the photos section and scroll down until you see beautiful Lubbock. Actually, it's been really nice here, not too hot, which also means no thunderstorms or tornados. I was really looking forward to that so I hope things will turn around.
I've decided not to go to MD Anderson. I'm putting all my eggs in Dr. Sugarbaker's basket. It becomes more and more obvious that he is the very, very best. He's done 1600 of these surgeries now and everytime I talk to Ilse, his wife, my confidence in him grows. I'm going to have surgery on July 9 and this horrible disease is going to be gone. At least for a period of time, if not forever. I had a long discussion today with one of Dr. Sugarbaker's former patients. She told me something that I had already figured out which is that going to him is not like going to a normal doctor. Serendipitous things just happen. She said that in case I hadn't figured it out, going to him and having this surgery is the mythic hero's journey. I've had that feeling since I first heard about him. The first day I talked to his wife I e-mailed Sharon and told her that he was the guy.
On a practical note, he recommends that a friend or family member be with the patient at all times. Sharon can do it, but I'm afraid she'll be worse for the wear. If any of you are thinking in terms of a vacation in Washington DC during the month of July, we've been given a free apartment (serendipity?) 5 miles from the hospital and we'd love to have some vistors to spell Sharon.
Wednesday, May 20, 2009
Monday, May 18, 2009
Enough!
Okay, so I spent a couple of days whining and feeling sorry for myself. Occasionally, it gets a bit overwhelming and I succumb, but not today. Today, things are looking up. Sharon and I are in Lubbock at my Dad's house. We're hanging here for awhile. Then on the 22nd, Don, his wife Ruth, Louie and Fleet are driving up for the weekend. Don rented a 7 passenger van. Monday the 25th we're going to all pile in the van for the trip to Austin. Sharon and I are supposed to fly to Houston from Austin that evening to be at MD Anderson in Houston the next morning, but I'm thinking about canceling all that stuff. They want to redo all the tests that have been done. Maybe their tests are better, but I'm sold on going to Dr. Sugarbaker in Washington DC. MD Anderson is just going to cost a bunch of money for tests that won't be used. Besides, it would be way more fun to hang in Austin for a few more days. We'll see.
Bigfoot
Bigfoot
Sunday, May 17, 2009
What's a Day Worth?
Yesterday sucked. Oh, it was a beautiful day and there were definitely highlights, but for me it sucked. I've tapped into a network of people that are in the process of surviving what I have. As I talk to them I'm getting a much clearer picture of what I'm in for and more importantly, what my family and friends are in for. This disease is so rare and yet there are two of us in Hood River and a third just passed away. What are the odds?
The doctor in DC recommends that someone, family or friend, be with the patient at all times. As I read through accounts of what the month in the hospital will be like I began to worry for Sharon. My part is easy, I really just lay there and have them do things to me. But for someone who loves you, this seems like an almost impossible load to bear.
Is it worth it? The cost is horrendous. Even if my insurance company pays 90%, which I expect, there are so many other costs, physical, mental and psychic. What really is an extra day of life worth? How do you place a value on that? I know my friends and family love me and I love them, but are there limits to what I should ask them to endure just so I can have more time? It seems so incredibly selfish.
And yet, I want to live. I feel obligated to do everything I can to live longer, but the doubt just keeps nagging at me and I start to understand just how small, unknowing and fragile I really am and how little control I really have over anything. It would be easier to concentrate on having a good death, but when I think about that I feel like a coward. Like my friend David Lindsay back in Texas used to say, "It's just gonna be fucked". This my friends, is fucked.
Today we're off to Texas and I profoundly hope that it will be a better day.
The doctor in DC recommends that someone, family or friend, be with the patient at all times. As I read through accounts of what the month in the hospital will be like I began to worry for Sharon. My part is easy, I really just lay there and have them do things to me. But for someone who loves you, this seems like an almost impossible load to bear.
Is it worth it? The cost is horrendous. Even if my insurance company pays 90%, which I expect, there are so many other costs, physical, mental and psychic. What really is an extra day of life worth? How do you place a value on that? I know my friends and family love me and I love them, but are there limits to what I should ask them to endure just so I can have more time? It seems so incredibly selfish.
And yet, I want to live. I feel obligated to do everything I can to live longer, but the doubt just keeps nagging at me and I start to understand just how small, unknowing and fragile I really am and how little control I really have over anything. It would be easier to concentrate on having a good death, but when I think about that I feel like a coward. Like my friend David Lindsay back in Texas used to say, "It's just gonna be fucked". This my friends, is fucked.
Today we're off to Texas and I profoundly hope that it will be a better day.
Saturday, May 16, 2009
The difference a day makes
Yesterday was a great day. I had errands to run early, insurance stuff to do, hospice stuff to do, stuff stuff to do. Chic and I had already planned to get together in the late AM and he came over. As I was finishing some stuff he cleaned up the kitchen and then we loaded Daisy and Pepper in the car and went over to the high school to the Indian Creek Trail.
http://www.hoodlivin.com/running/indian-creek/
It was great, we walked and talked about things heavy and deep, long and loose, inside/out, old/new, glad/sad and finally happened on a bench for a rest. As we sat there, we truly shared our feelings for each other, ourselves, our families. I remember talking about fear. We walked awhile more and came back to our car. Hunger reared its head and we dropped off the dogs and went to the Taqueria. Our deep discussion continued over huevos rancheros and I wonder what the girls next to us must have thought as we shut out the world and talked about things way stranger than alien abductions.
As we were getting ready to leave I started feeling dizzy. As I pushed my chair back I simultaneously tweaked my left knee and almost passed out. Sometimes it sucks being me. Chic had to drive me home where I promptly passed out on the sofa. It seems like I can go pretty hard and do what I want up to a point. Once I reach that point, it's a wall. The point is always changing and it's easy to misjudge. It's a fine line, if I don't do enough I feel bad and if I do too much I feel bad. If I can keep a good balance life is pretty good.
Thursday, May 14, 2009
Cut to the Chase
I don't think I'm a blogger. I was planning on writing a nice story that told about all things that have happened to me, but I just don't have the time. So, in a nutshell here it is.
1) After diagnosis we started doing some research and found that the Mother of All Surgeries (MOAS) as it is called is performed at about 8 places around the country. Look it up if you really want to know. www.surgicalconcology.com
2) I had already sent my info to MD Anderson in Houston when I talked to Dr. Sugarbaker's wife Ilse. He's the guy that invented the surgery. He's done over 900 surgeries for this very thing and after 10 years 67% are still alive. Those odds are so much better than assisted suicide. His office is in Washington DC.
3) Dr. Sugarbaker reviewed my records, declared me an ideal candidate and I have surgery scheduled for July 9, 2009, my birthday. We'll have to make a trip to Washington DC in June for check out, etc.
4) We're leaving this Sunday for Texas. While there we'll visit friends and family and go to MD Anderson on May 26, 27, and 28th to run tests and talk about their approach.
For now, I'm doing everything I can to prepare for surgery. June will be spent in mental and physical preparation. I expect a fight with my insurance company and I also expect to kick their ass if they mess with me on this.
1) After diagnosis we started doing some research and found that the Mother of All Surgeries (MOAS) as it is called is performed at about 8 places around the country. Look it up if you really want to know. www.surgicalconcology.com
2) I had already sent my info to MD Anderson in Houston when I talked to Dr. Sugarbaker's wife Ilse. He's the guy that invented the surgery. He's done over 900 surgeries for this very thing and after 10 years 67% are still alive. Those odds are so much better than assisted suicide. His office is in Washington DC.
3) Dr. Sugarbaker reviewed my records, declared me an ideal candidate and I have surgery scheduled for July 9, 2009, my birthday. We'll have to make a trip to Washington DC in June for check out, etc.
4) We're leaving this Sunday for Texas. While there we'll visit friends and family and go to MD Anderson on May 26, 27, and 28th to run tests and talk about their approach.
For now, I'm doing everything I can to prepare for surgery. June will be spent in mental and physical preparation. I expect a fight with my insurance company and I also expect to kick their ass if they mess with me on this.
Tuesday, May 12, 2009
April Fools!!
April 1, 2009. I was supposed to be flying to Texas that afternoon, but instead I found myself on the phone telling my friends Fleet and Don that this was not an April Fool's joke, but that I had been diagnosed with advanced abdominal cancer, that there was no treatment and that instead of coming to see them I was going to die. Downright rude.
I was diagnosed with peritoneal carcinimatosis due to mucinous adenocarcinoma, which is a fancy way of saying "appendix cancer". "Why can't they just cut out your appendix?" my Dad wanted to know and its a good question. The only problem is that it had spread to something called the omentum. That's the lining in your abdomen wall. It's supposed to be pretty thin and mine is now about 3 inches thick. In addition, my abdomen is full of probably several liters of fluid all of which contains cancer cells that are actively infecting all the other internal organs that are susceptible to this kind of cancer. Apparently, not all organs are. This is so rare that one estimate is that there are fewer than 1000 cases active worldwide at any one time. The doctors here told me that it's generally fatal, but that a few places do an operation that can extend your life a couple of years. Without coming out and saying it, they let me know that it really wasn't a good idea to do this surgery, but that they didn't really know that much about it either.
My wife Sharon and I began to slowly inform friends and family and in general try to absorb the blow. I began preparing to die. It's amazing how much there is to do. I had decided that the surgery option was really not for me, but I left the door open a crack and added to my now growing list, "decision on surgery".
I haven't ever wanted to associate with any formal religion and in fact, I wouldn't want to be part of any religion that would have me. I think they're all pretty much full of it. However, times like these will test you and make you question yourself. You do find yourself naked and alone asking "what the fuck is this all about?"
Which is exactly where I found myself; in the shower, naked and alone. I had just come from an appointment with an oncologist who had explained the assisted suicide law to me. Folks it just don't get much more grim than that. Talk about nothing left to lose. I decided that to try and get my arms around the surgery question I would just offer up the question to whoever or whatever was out there, be it God in a flowing robe, space aliens, or Jimmy Swaggart on drugs. Amazingly, I think I got an answer, although I'm not sure who from.
I had an overwhelming rush of what I can only call a "raging will to live". It wasn't what you think, it wasn't me breaking down and saying I wanted to live because, really, I was and still am ok with the idea of dying. In fact, I'm planning on doing it, I'm just not sure when yet. We'll all die, how can you not be ok with it? This was something way more primal. It felt like the essence of the primitive "will-to-live" force that must inhabit all of us and everything around us from my little chihuahua, Pepper, to the trees in my yard to the tiniest lichen that gains a foothold on a windswept mountain top. It got my attention.
The next day I called up my local doc and told him I wanted to talk about surgery.
More to come.
I was diagnosed with peritoneal carcinimatosis due to mucinous adenocarcinoma, which is a fancy way of saying "appendix cancer". "Why can't they just cut out your appendix?" my Dad wanted to know and its a good question. The only problem is that it had spread to something called the omentum. That's the lining in your abdomen wall. It's supposed to be pretty thin and mine is now about 3 inches thick. In addition, my abdomen is full of probably several liters of fluid all of which contains cancer cells that are actively infecting all the other internal organs that are susceptible to this kind of cancer. Apparently, not all organs are. This is so rare that one estimate is that there are fewer than 1000 cases active worldwide at any one time. The doctors here told me that it's generally fatal, but that a few places do an operation that can extend your life a couple of years. Without coming out and saying it, they let me know that it really wasn't a good idea to do this surgery, but that they didn't really know that much about it either.
My wife Sharon and I began to slowly inform friends and family and in general try to absorb the blow. I began preparing to die. It's amazing how much there is to do. I had decided that the surgery option was really not for me, but I left the door open a crack and added to my now growing list, "decision on surgery".
I haven't ever wanted to associate with any formal religion and in fact, I wouldn't want to be part of any religion that would have me. I think they're all pretty much full of it. However, times like these will test you and make you question yourself. You do find yourself naked and alone asking "what the fuck is this all about?"
Which is exactly where I found myself; in the shower, naked and alone. I had just come from an appointment with an oncologist who had explained the assisted suicide law to me. Folks it just don't get much more grim than that. Talk about nothing left to lose. I decided that to try and get my arms around the surgery question I would just offer up the question to whoever or whatever was out there, be it God in a flowing robe, space aliens, or Jimmy Swaggart on drugs. Amazingly, I think I got an answer, although I'm not sure who from.
I had an overwhelming rush of what I can only call a "raging will to live". It wasn't what you think, it wasn't me breaking down and saying I wanted to live because, really, I was and still am ok with the idea of dying. In fact, I'm planning on doing it, I'm just not sure when yet. We'll all die, how can you not be ok with it? This was something way more primal. It felt like the essence of the primitive "will-to-live" force that must inhabit all of us and everything around us from my little chihuahua, Pepper, to the trees in my yard to the tiniest lichen that gains a foothold on a windswept mountain top. It got my attention.
The next day I called up my local doc and told him I wanted to talk about surgery.
More to come.
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