From: Free Fire Zone
21 in Phoenix
I was 21 in Phoenix in November of 66. Stayed in a one-room apartment near downtown, saw the sound of music at the theatre down the road. That night I was alone, walked across the street to the liquor store, bought a small bottle of rum and some Coca Cola, some chips and dips, took it all back to the apartment. My first legal drink in CONUS, having just turned 21, you see. In the liquor store, I'd showed him my driver's license, and he said happy birthday. I was adult now, able to drink. I was a child until that day; because we used children as soldiers in our country, I was enfranchised to kill, but not to drink or vote. I counted this as a sort of irony, but I had no problem with it. American children overseas, you see, can drink liquor. If the children happen also to be soldiers, then in fact it's an activity assumed of them. Most of my soldiering had been done overseas--a year on Okinawa, where I played with the toys according to the customs of the 173d Airborne Brigade, and then 17 months in Vietnam, a different, yet not different theme. Anyhow, it doesn't work quite the same way back home, and in those days in Arizona, you had to be 21 to legally get drunk.
I was only a couple weeks out of the bush, in the middle of my soldiering years, in limbo, before I went to be an ASA troopie back east. I was still thinking I might be a sort of civilian at the time, but it really wasn't working out very well.
Sat down at my kitchen table in the little apartment. I might have invited someone over, that could have happened, but I didn't really want to talk about it. Drank the pint of rum and the soda, listened to the reel to reels I'd made, good, good guitiars. Got pretty drunk, thought about people I didn't wan't to think about, things I didn't want to know about what they were doing at just that minute, my team, you know...what an asshole I was for training Oconner to do my job, because it was my job, not his, and he didn't need to have the team behind him because he just ...might get killed. I had already heard some news, about how Lieb and Jones got fucked up on the extraction the week I left...they...turned out okay, Jones went back to the team and Lieb went home with two broken arms. I wouldn't have put them there. It wasn't Oconner's fault. It was mine. And that was okay. It passed.
Next day, or maybe the day after that, I'd hopped on the back of the TR6 and blasted to work out at Litchfield, the bike singing and humming, asking for more. I was entranced, and didn't notice anything amiss until actually I pulled into the company parking lot, when I noticed the two AHP interceptor Chryslers zooming up on either side of me, and another one veering in from the other end of the parking lot--cops stood, each shielded behind his vehicle, hand on the weapon at his belt, the tactical pause, until they all were in place and ready to proceed--very calm, very good at what they were doing. It took a full ten seconds before I realized I was being captured. I had no idea they even were chasing me. I took great pains to obey them, to show them by body language that they were successful, letting them be as calm as they were willing to be. In the short version, the interviewing officer told me that he thought 135 mph was a bit excessive. I couldn't believe the trumpet was going that fast, and told him so. I know he believe me, and he laughed and shook his head. Cost me most of what I made that month at Litchfield, and I was lucky I didn't have to do more than ten days while we got it ironed out.
Not long after that I was on a plane to Devens, and got there at night, in civilian clothes, put my head down on the bottom bunk in a transient barracks, safe again.
Wednesday, November 10, 2004
Letter from Seattle
7 November 2004
Nick....
Happy Birthday, son.
It was good to hear your voice. Things are going well here, as I said.
I try to remember how it was when I was about your age, and when I do, I don’t worry so much. Parents always want their kids to be happy and do well. Some parents just have strange ways of thinking about what it takes to be be happy, and they forget how it is to be young. I haven’t forgotten that. Your mom and grandmother worry about you more than I do regarding certain things. They are afraid for you, but I have faith in you. They just don’t want you to be hurt--well, neither do I, but pain comes and goes, and we just keep on keeping on. I know times are going to be hard for you now and then, but you are smart and strong, and if you keep your head you’ll do fine.
You can make some bad decisions that may cost you years of grief to straighten out. If I knew how to help you avoid that I would tell you the magic words, so you wouldn’t have to do any unnecessary struggling to regain ground you might not have lost if you’d made better decisions. But life is for living. That’s your job. All I can tell you that’s wise is this: don’t think like a criminal. That’s a dead end. No matter what, don’t steal and try not to lie very much. As you get experience (and I know you are getting that now) you will see what I mean.
I had great adventures when I was your age. In my case, many of them came to me while I was in the Army. Most of my Army days had not much to do with combat or Vietnam. I spent over 7 years and a soldier, and 17 months of that in Vietnam. I was decorated several times, but I was never a hero, just some dumbshit trying to do his job, so some other dumbshit wouldn’t have to come out there and do it for me.
But I was only a couple years older than you are now when I got out of the Army, and moved to Hawaii to go to school. Talk about a wow experience!
I wish I could compress the stories and squirt them to you in this note, so you could get a taste--just a touch of the flavor--of what it was like to be in my early twenties, and living in Paradise.
I guess this note is just a sort of one-sided conversation, so don’t worry that I’m getting senile. You know I like to write, I just don’t write letters very much, but I will, if you want to read them.
I’d like to tell you some of my stories. I have a lot of them. Not with moral endings, or with any themes for good living, but just stuff that happened to me. I have written a few of them down already, and they are in my computer down in Oregonoia. Might be, now that I have some spare time, I can type up a few more and send them to you from time to time while I’m up here in Seattle.
Maybe sometime I’ll tell you about how I lived on the flank of a volcano and grew million-dollar crops of Narcoweed for the Filipino Teixeira. His sons and I built a real grass hut in the middle of a field of wild orchids, near a small stream that washed down the hill on a gleaming bed of black pahoehoe, which is a kind of lava that’s so smooth that it looks like glass. His daughter, named Lanai, same as the island, came up from Keeau two or three times a month, to bring me food and sing with me while I played my guitar.
I was one of about ten farmers working for the the family--they didn’t like to have us going into town a lot, so they made up food for us, stuff like minced spiced meat and rice, and packed it into these neat bamboo tubes, about four inches across and maybe two feet long...a joint of bamboo, and sealed the ends the old way, by tying it with a ti leaf cover, using bamboo threads. The food would keep for days, and it was always delicious. They treated me and the other guys like family.
Sometimes two of the sons, Bong and John, would come up, and we would hunt the small Hawaiian pigs by running them down with their two little dogs. The boars were not as big as the California boars, and maybe got about three hundred pounds or so. The dogs were nuts, and real good hunters. They would run the pig to ground, and when it was winded, they would be running around it to keep it from regaining it’s strength before we could get there. When we got ready, John or Bong would whistle, and the little dogs would charge. One would catch the boar on the snout, and the other would catch him by the nuts. He’d be totally grossed out for about five seconds with pain and shock, and while he was confused, one of us would slip in and slit his throat with a long butcher knife. We were wild kids. This would confuse him, but it didn’t look like it hurt. When we did it right, he would bleed out in a few seconds, standing there while the dogs held him. Then we would field dress him and take him back to my hut.
We cooked the pig in a pit at my hut. Bury it wrapped in ti leaves, stuffed with seasoned breadfruit or jackfruit...soak this stuff in shoyu and butter and garlic, put in some other stuff in the pig’s ribs. Wrap it up good and cook it all day in the pit. Dig it up that night and pull the meat of with your fingers, it was so tender.
We’d sing music and talk story all night at those times--John, Bong, Lanai, maybe even the old man and some of the other brothers would be there. Life in Paradise.
I also had a great time while living in town...Honolulu and environs...but those are a whole other set of stories....
Ah well.
Enclosed is something you can take to the bank. Take care son.
I hope you have a good birthday
Love...
Nick....
Happy Birthday, son.
It was good to hear your voice. Things are going well here, as I said.
I try to remember how it was when I was about your age, and when I do, I don’t worry so much. Parents always want their kids to be happy and do well. Some parents just have strange ways of thinking about what it takes to be be happy, and they forget how it is to be young. I haven’t forgotten that. Your mom and grandmother worry about you more than I do regarding certain things. They are afraid for you, but I have faith in you. They just don’t want you to be hurt--well, neither do I, but pain comes and goes, and we just keep on keeping on. I know times are going to be hard for you now and then, but you are smart and strong, and if you keep your head you’ll do fine.
You can make some bad decisions that may cost you years of grief to straighten out. If I knew how to help you avoid that I would tell you the magic words, so you wouldn’t have to do any unnecessary struggling to regain ground you might not have lost if you’d made better decisions. But life is for living. That’s your job. All I can tell you that’s wise is this: don’t think like a criminal. That’s a dead end. No matter what, don’t steal and try not to lie very much. As you get experience (and I know you are getting that now) you will see what I mean.
I had great adventures when I was your age. In my case, many of them came to me while I was in the Army. Most of my Army days had not much to do with combat or Vietnam. I spent over 7 years and a soldier, and 17 months of that in Vietnam. I was decorated several times, but I was never a hero, just some dumbshit trying to do his job, so some other dumbshit wouldn’t have to come out there and do it for me.
But I was only a couple years older than you are now when I got out of the Army, and moved to Hawaii to go to school. Talk about a wow experience!
I wish I could compress the stories and squirt them to you in this note, so you could get a taste--just a touch of the flavor--of what it was like to be in my early twenties, and living in Paradise.
I guess this note is just a sort of one-sided conversation, so don’t worry that I’m getting senile. You know I like to write, I just don’t write letters very much, but I will, if you want to read them.
I’d like to tell you some of my stories. I have a lot of them. Not with moral endings, or with any themes for good living, but just stuff that happened to me. I have written a few of them down already, and they are in my computer down in Oregonoia. Might be, now that I have some spare time, I can type up a few more and send them to you from time to time while I’m up here in Seattle.
Maybe sometime I’ll tell you about how I lived on the flank of a volcano and grew million-dollar crops of Narcoweed for the Filipino Teixeira. His sons and I built a real grass hut in the middle of a field of wild orchids, near a small stream that washed down the hill on a gleaming bed of black pahoehoe, which is a kind of lava that’s so smooth that it looks like glass. His daughter, named Lanai, same as the island, came up from Keeau two or three times a month, to bring me food and sing with me while I played my guitar.
I was one of about ten farmers working for the the family--they didn’t like to have us going into town a lot, so they made up food for us, stuff like minced spiced meat and rice, and packed it into these neat bamboo tubes, about four inches across and maybe two feet long...a joint of bamboo, and sealed the ends the old way, by tying it with a ti leaf cover, using bamboo threads. The food would keep for days, and it was always delicious. They treated me and the other guys like family.
Sometimes two of the sons, Bong and John, would come up, and we would hunt the small Hawaiian pigs by running them down with their two little dogs. The boars were not as big as the California boars, and maybe got about three hundred pounds or so. The dogs were nuts, and real good hunters. They would run the pig to ground, and when it was winded, they would be running around it to keep it from regaining it’s strength before we could get there. When we got ready, John or Bong would whistle, and the little dogs would charge. One would catch the boar on the snout, and the other would catch him by the nuts. He’d be totally grossed out for about five seconds with pain and shock, and while he was confused, one of us would slip in and slit his throat with a long butcher knife. We were wild kids. This would confuse him, but it didn’t look like it hurt. When we did it right, he would bleed out in a few seconds, standing there while the dogs held him. Then we would field dress him and take him back to my hut.
We cooked the pig in a pit at my hut. Bury it wrapped in ti leaves, stuffed with seasoned breadfruit or jackfruit...soak this stuff in shoyu and butter and garlic, put in some other stuff in the pig’s ribs. Wrap it up good and cook it all day in the pit. Dig it up that night and pull the meat of with your fingers, it was so tender.
We’d sing music and talk story all night at those times--John, Bong, Lanai, maybe even the old man and some of the other brothers would be there. Life in Paradise.
I also had a great time while living in town...Honolulu and environs...but those are a whole other set of stories....
Ah well.
Enclosed is something you can take to the bank. Take care son.
I hope you have a good birthday
Love...
Monday, November 08, 2004
B&S See
We are folks in a boat, afloat on The Big & Scary Ocean. Can't stay dry, but won't drown while the boat floats. Might starve.
Lifeboat condundrum--who has to get out when the boat gets full? Who gets to drown while we watch? We are wired to help when we can, but always, always, to survive, when we can figure out how. We draw the arbitrary lines. We try to make it work. Malthusian logic comes from somewhere, even though it's sometimes misapplied because, I think, of haste and panic. Do you understand yet?
Then, never mind. I press on.
You throw the net out to help...try to see all the lost souls floating around--they are trying to not drown--and you feel the despair...can't help them all, hell, can't even help all the ones you can see. Noses just above the water line, heads bobbing, always some asshole splashing around making it harder for the marginals. Here and there a hand goes up, a head goes under. Ah, shit, this time it was someone you knew. You wait to see if he’ll come up again. A bunch of guys in a boat, staring at the water. Ah.
Never mind. You are still in the boat, but it wasn't that long ago that you, yourself, were in the water, and you know what it feels like when the water splashes up into your eyes, covers the nose, and you have to hold your breath until you can get steady enough to breath again. Oh jeez, and you can't lose your head. Control. Control yourself.
But then, you help one guy, just because you can, and he turns out to be some lousy asshole that you don't even want around the house, on account of how he's a bad influence on the kids. But at least you know he won't...won't drown in the living room in front of you, with you watching. Ah. There goes my metaphor. Try not to care too much about that. Caring is expensive in the short run.
The one you loved sank out of sight and your heart is never the same again. What's the use? He was better than me. I can't take his place, and I don't know how to help them. I just watch them sink, one by one, or groups at a time.
Throw the net. Save a whale, maybe hug a goddam tree. That all works to keep the memes alive...they drive you, you know. It's not your good heart, it’s just a bunch of electro-chemical chains popping and slurping around in the dark box of the brainpan. Oldfarts impart survival values to the system by virtue of surviving--beyond the passing of the genes, they provide an example for the youngsters who otherwise would prefer to shun them. The genes are just nature's way to have kids around to listen to the goddam stories. But you have to figure out a way to get them to listen to the stories. For you existentialists, that's why the cosmic muffin invented the feeling of lonliness.
"Arrhgh..." sez Og. That means Sabre-toothed cat. Ooog, his son, listens, or not. The lesson is uncomplicated and valuable.
"Oooohh, nooooo...." sez Ramon to his lover, Harold. That means, for example, redvoter iz Aunt Emma, or something like that. The lesson is not so clear.
That was just an illustration.
Do you think this is bullshit?
You have to do what you can, is all it means. The unverse doesn't compute, but then it doesn't have to compute at my level, is what I think.
Does this trip have a purpose? Does it need to have one? Okay, make one up, if that's what you need to do, but try to be careful, because you have to account for all the Mormons, too, if you see what I mean. Your cosmic muffin is as good as my cosmic muffin. I like the idea that the trip is the reason, not the destination. The deal with the 79 virgins okay, and the prospect of sitting at the foot of the lord and playing a harp to accompany the singing of fundamentalist hymns has its attractions. But to me those are just examples of another trip, not a reason for this one, and they don’t get me off the wheel of inquiry. Endless speculation. My metaphor is as good as your metaphor. For me, it all comes back to the trip.
It's a waste to not try, even if you are trying to cast your net so wide that you don't get anything done. You probably won’t save a single whale, for example. Just try to not let me drown before I actually have to.
I'll try to do the same for you.
Lifeboat condundrum--who has to get out when the boat gets full? Who gets to drown while we watch? We are wired to help when we can, but always, always, to survive, when we can figure out how. We draw the arbitrary lines. We try to make it work. Malthusian logic comes from somewhere, even though it's sometimes misapplied because, I think, of haste and panic. Do you understand yet?
Then, never mind. I press on.
You throw the net out to help...try to see all the lost souls floating around--they are trying to not drown--and you feel the despair...can't help them all, hell, can't even help all the ones you can see. Noses just above the water line, heads bobbing, always some asshole splashing around making it harder for the marginals. Here and there a hand goes up, a head goes under. Ah, shit, this time it was someone you knew. You wait to see if he’ll come up again. A bunch of guys in a boat, staring at the water. Ah.
Never mind. You are still in the boat, but it wasn't that long ago that you, yourself, were in the water, and you know what it feels like when the water splashes up into your eyes, covers the nose, and you have to hold your breath until you can get steady enough to breath again. Oh jeez, and you can't lose your head. Control. Control yourself.
But then, you help one guy, just because you can, and he turns out to be some lousy asshole that you don't even want around the house, on account of how he's a bad influence on the kids. But at least you know he won't...won't drown in the living room in front of you, with you watching. Ah. There goes my metaphor. Try not to care too much about that. Caring is expensive in the short run.
The one you loved sank out of sight and your heart is never the same again. What's the use? He was better than me. I can't take his place, and I don't know how to help them. I just watch them sink, one by one, or groups at a time.
Throw the net. Save a whale, maybe hug a goddam tree. That all works to keep the memes alive...they drive you, you know. It's not your good heart, it’s just a bunch of electro-chemical chains popping and slurping around in the dark box of the brainpan. Oldfarts impart survival values to the system by virtue of surviving--beyond the passing of the genes, they provide an example for the youngsters who otherwise would prefer to shun them. The genes are just nature's way to have kids around to listen to the goddam stories. But you have to figure out a way to get them to listen to the stories. For you existentialists, that's why the cosmic muffin invented the feeling of lonliness.
"Arrhgh..." sez Og. That means Sabre-toothed cat. Ooog, his son, listens, or not. The lesson is uncomplicated and valuable.
"Oooohh, nooooo...." sez Ramon to his lover, Harold. That means, for example, redvoter iz Aunt Emma, or something like that. The lesson is not so clear.
That was just an illustration.
Do you think this is bullshit?
You have to do what you can, is all it means. The unverse doesn't compute, but then it doesn't have to compute at my level, is what I think.
Does this trip have a purpose? Does it need to have one? Okay, make one up, if that's what you need to do, but try to be careful, because you have to account for all the Mormons, too, if you see what I mean. Your cosmic muffin is as good as my cosmic muffin. I like the idea that the trip is the reason, not the destination. The deal with the 79 virgins okay, and the prospect of sitting at the foot of the lord and playing a harp to accompany the singing of fundamentalist hymns has its attractions. But to me those are just examples of another trip, not a reason for this one, and they don’t get me off the wheel of inquiry. Endless speculation. My metaphor is as good as your metaphor. For me, it all comes back to the trip.
It's a waste to not try, even if you are trying to cast your net so wide that you don't get anything done. You probably won’t save a single whale, for example. Just try to not let me drown before I actually have to.
I'll try to do the same for you.
Thursday, November 04, 2004
Playing With Drugs...
We drove to Seattle from Southern Oregon last week, about 7 and a half hours. This was not a hard drive, and the changing weather made it even more interesting...some rain, some sun, a couple of coffee breaks, and RedBud drove the last 150 miles. We checked into the Puget Sound VA to get our apartment assignment and keys, and directions. That night we ate at a Vietnamese Restaurant around the block from the the Apartment.
Next day was a clear day, didn't have any appointments. We make short tour of the neighborhood, all abuzz, small town folks in the big city. RedBud was glazed over by the time we found a restuarant to eat breakfast--our ritual. It didnt' help that he only place we could find didn't serve breafasts on weekdays, and anyhow it was a Marie Callendars place. The food was good, and after a while RedBud calmned down. No markers, you know. Rituals are important, and we either eat breakfast at home, and play a game of chess before we start our days, or we go out to eat, read the paper and share the puzzles. These are important things.
We got our cable stuff set up, and over the next few days all that came through. Our aparment manager, Sarah, is a 9-year myeloma survivor, and now one of my new heroes. Thursday we went up to our appointments at the VA. We settle into our routines here. Over the weekened we met a couple more folks in the building...a youngish couple, Mormons, with two children. They came by the appartment for trick or treat. We gave the two-year old caveman a banana, and the three-year old ballerina a banana.
This week we toured the SCCA building, and had my veins checked. Tuesday I had the Hickmah catheter installed. This was similar to the PICC line I lived on all summer, but the Borg plugs are two instead of one, and they come out my chest instead of my arm. The operation was like all of them: they wheeled me in on a guerney and gave me drugs, so I floated throught the procedure, aware only of vague tugs and pulls and background conversations. Later on it was over, and some guy wheeled be back up to the room on the MTU ward. I met a couple new nurses and talked to my docs, and they began the chemo. This was not like the last chemo.
The drug came down the line like a train. In a matter of an hour I was in a rush, more or less off my feet and somewhat disoriented. I ate supper. But two hours later the nausea hit. My nightly routine is to urinate every hour or so when I drink lots of fluids, and these guy have me drinking lots of fluids. But every time I returned from the bathroom the nausea would hit. I complained, and the nurse brought me a drug to help me sleep. The night passed. By midnite the last of the chemo drips were done, and I slept better, having to get up only once or twice to use the bathroom. I was in a haze, uncomfortable, and feeble.
By morning the chemo haze was gone, and I felt week but clear. I was skeptical, but my trip to the bathroom didn't bring on any nausea. Breakfast came. I was skeptical, but it went down and stayed down.
They have given me a battery of drugs...six or seven different kinds, including something to lower my blood pressure a little. I am working on keeping this stuff straight.
I napped off and on during the morning. At 0930 the nurse hooked up today's drip. She assured me that it wouldn't be as intense as last night. It wasn't. The drip last four hours. During that time RedBud arrived, and we chatted. She flitted in and out during the drift session, since I was sort of drifting in and ouf of naptime, catching up on my sleep from last night's doings.
Later on Charlie came in and showed us how to maintain the Hickman Line. We came back home, to the apartments.
Thursday night was uneventful, except for learning to sleep with the Hickman device...a two-headed snake, that dangles six inches down from my right upper chest. Nothing to it. Like sleeping with a new baby...you never really forget it, and you won't roll over on it. Friday we had our leisurely breakfast in the apartment before going back to the hospital for the last infusion. Good, but not quite normal. This afternoon we stopped off at Safeway to look the place over and get a discount card, some low-fat ice cream and chocolate milk. I'm told to take stuff with high calcium content, to help with the seeding and fertilizing of the stem cell process. Never mind. I may try to explain that later.
Anyhow, Seattle grows on you. It may grow on me more. I'm hearing talk about a possible follow up transplant after my auto...an allo, taken from the allo data base. That's not for sure, and it's some five or six months down the road. This is tremendously good news, if it comes to pass. Maybe more on that later, too
By the way, this isn't all about the transplant. I have more I want to say in this blog. I don't know how, yet.
Bloggers, blog on!
blog out....
Next day was a clear day, didn't have any appointments. We make short tour of the neighborhood, all abuzz, small town folks in the big city. RedBud was glazed over by the time we found a restuarant to eat breakfast--our ritual. It didnt' help that he only place we could find didn't serve breafasts on weekdays, and anyhow it was a Marie Callendars place. The food was good, and after a while RedBud calmned down. No markers, you know. Rituals are important, and we either eat breakfast at home, and play a game of chess before we start our days, or we go out to eat, read the paper and share the puzzles. These are important things.
We got our cable stuff set up, and over the next few days all that came through. Our aparment manager, Sarah, is a 9-year myeloma survivor, and now one of my new heroes. Thursday we went up to our appointments at the VA. We settle into our routines here. Over the weekened we met a couple more folks in the building...a youngish couple, Mormons, with two children. They came by the appartment for trick or treat. We gave the two-year old caveman a banana, and the three-year old ballerina a banana.
This week we toured the SCCA building, and had my veins checked. Tuesday I had the Hickmah catheter installed. This was similar to the PICC line I lived on all summer, but the Borg plugs are two instead of one, and they come out my chest instead of my arm. The operation was like all of them: they wheeled me in on a guerney and gave me drugs, so I floated throught the procedure, aware only of vague tugs and pulls and background conversations. Later on it was over, and some guy wheeled be back up to the room on the MTU ward. I met a couple new nurses and talked to my docs, and they began the chemo. This was not like the last chemo.
The drug came down the line like a train. In a matter of an hour I was in a rush, more or less off my feet and somewhat disoriented. I ate supper. But two hours later the nausea hit. My nightly routine is to urinate every hour or so when I drink lots of fluids, and these guy have me drinking lots of fluids. But every time I returned from the bathroom the nausea would hit. I complained, and the nurse brought me a drug to help me sleep. The night passed. By midnite the last of the chemo drips were done, and I slept better, having to get up only once or twice to use the bathroom. I was in a haze, uncomfortable, and feeble.
By morning the chemo haze was gone, and I felt week but clear. I was skeptical, but my trip to the bathroom didn't bring on any nausea. Breakfast came. I was skeptical, but it went down and stayed down.
They have given me a battery of drugs...six or seven different kinds, including something to lower my blood pressure a little. I am working on keeping this stuff straight.
I napped off and on during the morning. At 0930 the nurse hooked up today's drip. She assured me that it wouldn't be as intense as last night. It wasn't. The drip last four hours. During that time RedBud arrived, and we chatted. She flitted in and out during the drift session, since I was sort of drifting in and ouf of naptime, catching up on my sleep from last night's doings.
Later on Charlie came in and showed us how to maintain the Hickman Line. We came back home, to the apartments.
Thursday night was uneventful, except for learning to sleep with the Hickman device...a two-headed snake, that dangles six inches down from my right upper chest. Nothing to it. Like sleeping with a new baby...you never really forget it, and you won't roll over on it. Friday we had our leisurely breakfast in the apartment before going back to the hospital for the last infusion. Good, but not quite normal. This afternoon we stopped off at Safeway to look the place over and get a discount card, some low-fat ice cream and chocolate milk. I'm told to take stuff with high calcium content, to help with the seeding and fertilizing of the stem cell process. Never mind. I may try to explain that later.
Anyhow, Seattle grows on you. It may grow on me more. I'm hearing talk about a possible follow up transplant after my auto...an allo, taken from the allo data base. That's not for sure, and it's some five or six months down the road. This is tremendously good news, if it comes to pass. Maybe more on that later, too
By the way, this isn't all about the transplant. I have more I want to say in this blog. I don't know how, yet.
Bloggers, blog on!
blog out....
Monday, November 01, 2004
Short time
If you haven't already done so, don't forget to vote against the candidate of your choice.
Seattle is a huge beautiful city. More some other time. We just got here a couple days ago.
Seattle is a huge beautiful city. More some other time. We just got here a couple days ago.
Saturday, October 23, 2004
Seattle
RedBud and I are going to Seattle this coming Tuesday, 25 October. I have a couple of Seattle stories already. Here's one.
The first time I saw Seattle was in the early 70's. I was hitch-hiking with a friend. We came in over the mountain from Idaho, having spent a night on the rez, shooting pool and drinking wine with a bunch of locals who had picked us up on the road.
Dark on the road, right after sunset, not much traffic. The wind blew at us, blew through us, if you want to know the truth. Snow lay in patches on the flats, and in bunches under the pines. I was mulling our prospects, looking around for a suitable place to bivouac. We had good gear in our rucks, and some power bars.
But a car loaded with local Nez Perce folks pulled over and we got in. I sat in the back with three huge men, Jaymi sat up front with two huge women. They were headed to a town up the road about 60 miles. One of the guys in the back reached into his jacket, pulled out a peace pipe and some buds. We smoked, and had conversation. Another of the men reached down beneath his legs and pulled a bottle of wine out of a case, unscrewed the cap. He filled the cap and held it up to toast: "To our dead brothers," he said, and tossed the cap, and the sip of wine, out the window, then he passed the bottle to me. The party was on. Whoever had the bottle when it was emptied threw it out the window, making sure the bottle held a swallow for our dead friends. Our dead friends probably were drunk by the time we got to town.
The town was houses and a few stores on a couple of paved streets, some more houses on some unpaved streets. The streets seemed to lead vaguely into the flank of a shallow, wooded hill. No streetlights were visible, except for a single bulb above the pair of gas pumps out in front of the store. The store was closed. The only place open was the bar. We played pool and talked story. Dark faces framed by long black hair, denim and parkas, sweaters and boots. People laughing back and forth. Cigarette smoke wafting around the neon signs at the bar, in the dark air above the lamps over the pool table.
Outside on the snow porch was where we went for more peace pipe. The rez police were somehow elsewhere, said one of my friends, dark eyes glinting in the yellow light above the door on the porch. Out beyond the porch dogs bark across the small town to one another. At the time I believe I understood what they were trying to say.
Sometime later, or early in the dark of the morning, we slept warm, zipped up in our bags on someone's summer porch. Sucking in the cold air through the end of my goose-down mummy bag, blowing out visible air into night. Jaymi was curled like a cat in her own bag, still, a faint haze of her warm breath rising over her. I woke several times to listen to how quiet the town became, when the dogs were sleeping. That next morning we were up and off, back on the road again. My rucksack pulled at familiar places, a comfortable weight, a sort of tangible type of freedom. Jaymi walked behind me, toting her own ruck, lost in her own thoughts. We ate breakfast at the restaurant--home style everything, from a Kountry Kitchen that knew how to make gravy--then walked a mile or so, crunching on new snow along the muddy road, to a wide spot near a small bridge, where we could hear the stream. Sun came and loosened the snow on the branches of the pines, and it fell in rhythmic rushes, a tempo all it's own. The big part of the Cascade range was before us, a huge wall of rock and trees. Time stopped for us while we waited for the car to come.
A couple of rides took us into Seattle. From the very top of the mountain, the time thing kicked back in. Houses all over the place. It was hard to make conversation with the drivers. We exited the last ride in the middle of everything. We ate at a Chinese restaurant on the waterfront, then went for a walk along the piers.
For supper we bought clam buckets, and ate while we sat on a pier and contemplated the water. At some point we saw a submarine sliding through the water toward us. I was surprised at how small it was, like a toy. Several sailors were on deck, and the skipper was in the con tower, shouting obscenities to them,as they threw ropes to folks on the dock. The skipper wore a turtleneck sweater, a billed cap. He had a hard, lined face, and his scraggly beard seemed wrongly pasted on. A few well thrown obscenities later the submarine was secured. I realized that the dozen or so onlookers on the pier were family members or friends of the sub's crew.
We picked up our rucks and walked away from them. We walked to the revolving restaurant, took the elevator to the top, admired the sunset and the panorama as we ascended. Had some rum and coffee and watched the lights go by. We went back down to the ground, and walked around the the city. After a supper, again at the Chinese food place, we found a wilderness camping opportunity near a cloverleaf interchange. The bushes were damp from rains, but we found a place near the bridge and I hid us well. Nobody would get to us unheard, and we would be dry.
Next morning we had breakfast at a franchise place, then, Jaymi and I hitched down to Anacortes Island, to wait at the ferry for our friends, who were driving up from California. It took us all day to get there, but we were in no hurry. No ferries were running, and the place was technically closed, but we got to sleep inside. My friends were from Hawaii. Bob had been to the mainland on one occasion, but Carol and her son had never been out the state. We were touring the west together that winter, and this phase of the trip was taking us to Bamff. The Bamff part didn't quite happen, but that's another story.
Next week RedBud and I will check into the apartments the VA has set aside for their patients. We plan to be there about three months. If I can manage to get back into this site I'll post from there now and then.
The first time I saw Seattle was in the early 70's. I was hitch-hiking with a friend. We came in over the mountain from Idaho, having spent a night on the rez, shooting pool and drinking wine with a bunch of locals who had picked us up on the road.
Dark on the road, right after sunset, not much traffic. The wind blew at us, blew through us, if you want to know the truth. Snow lay in patches on the flats, and in bunches under the pines. I was mulling our prospects, looking around for a suitable place to bivouac. We had good gear in our rucks, and some power bars.
But a car loaded with local Nez Perce folks pulled over and we got in. I sat in the back with three huge men, Jaymi sat up front with two huge women. They were headed to a town up the road about 60 miles. One of the guys in the back reached into his jacket, pulled out a peace pipe and some buds. We smoked, and had conversation. Another of the men reached down beneath his legs and pulled a bottle of wine out of a case, unscrewed the cap. He filled the cap and held it up to toast: "To our dead brothers," he said, and tossed the cap, and the sip of wine, out the window, then he passed the bottle to me. The party was on. Whoever had the bottle when it was emptied threw it out the window, making sure the bottle held a swallow for our dead friends. Our dead friends probably were drunk by the time we got to town.
The town was houses and a few stores on a couple of paved streets, some more houses on some unpaved streets. The streets seemed to lead vaguely into the flank of a shallow, wooded hill. No streetlights were visible, except for a single bulb above the pair of gas pumps out in front of the store. The store was closed. The only place open was the bar. We played pool and talked story. Dark faces framed by long black hair, denim and parkas, sweaters and boots. People laughing back and forth. Cigarette smoke wafting around the neon signs at the bar, in the dark air above the lamps over the pool table.
Outside on the snow porch was where we went for more peace pipe. The rez police were somehow elsewhere, said one of my friends, dark eyes glinting in the yellow light above the door on the porch. Out beyond the porch dogs bark across the small town to one another. At the time I believe I understood what they were trying to say.
Sometime later, or early in the dark of the morning, we slept warm, zipped up in our bags on someone's summer porch. Sucking in the cold air through the end of my goose-down mummy bag, blowing out visible air into night. Jaymi was curled like a cat in her own bag, still, a faint haze of her warm breath rising over her. I woke several times to listen to how quiet the town became, when the dogs were sleeping. That next morning we were up and off, back on the road again. My rucksack pulled at familiar places, a comfortable weight, a sort of tangible type of freedom. Jaymi walked behind me, toting her own ruck, lost in her own thoughts. We ate breakfast at the restaurant--home style everything, from a Kountry Kitchen that knew how to make gravy--then walked a mile or so, crunching on new snow along the muddy road, to a wide spot near a small bridge, where we could hear the stream. Sun came and loosened the snow on the branches of the pines, and it fell in rhythmic rushes, a tempo all it's own. The big part of the Cascade range was before us, a huge wall of rock and trees. Time stopped for us while we waited for the car to come.
A couple of rides took us into Seattle. From the very top of the mountain, the time thing kicked back in. Houses all over the place. It was hard to make conversation with the drivers. We exited the last ride in the middle of everything. We ate at a Chinese restaurant on the waterfront, then went for a walk along the piers.
For supper we bought clam buckets, and ate while we sat on a pier and contemplated the water. At some point we saw a submarine sliding through the water toward us. I was surprised at how small it was, like a toy. Several sailors were on deck, and the skipper was in the con tower, shouting obscenities to them,as they threw ropes to folks on the dock. The skipper wore a turtleneck sweater, a billed cap. He had a hard, lined face, and his scraggly beard seemed wrongly pasted on. A few well thrown obscenities later the submarine was secured. I realized that the dozen or so onlookers on the pier were family members or friends of the sub's crew.
We picked up our rucks and walked away from them. We walked to the revolving restaurant, took the elevator to the top, admired the sunset and the panorama as we ascended. Had some rum and coffee and watched the lights go by. We went back down to the ground, and walked around the the city. After a supper, again at the Chinese food place, we found a wilderness camping opportunity near a cloverleaf interchange. The bushes were damp from rains, but we found a place near the bridge and I hid us well. Nobody would get to us unheard, and we would be dry.
Next morning we had breakfast at a franchise place, then, Jaymi and I hitched down to Anacortes Island, to wait at the ferry for our friends, who were driving up from California. It took us all day to get there, but we were in no hurry. No ferries were running, and the place was technically closed, but we got to sleep inside. My friends were from Hawaii. Bob had been to the mainland on one occasion, but Carol and her son had never been out the state. We were touring the west together that winter, and this phase of the trip was taking us to Bamff. The Bamff part didn't quite happen, but that's another story.
Next week RedBud and I will check into the apartments the VA has set aside for their patients. We plan to be there about three months. If I can manage to get back into this site I'll post from there now and then.
Saturday, October 02, 2004
October
The Rolling Stones doing Wild Horses--computer radio. Headsets drive the eardrums to the center of the skull. Foreigner does Hot Blooded. It all sounds great if you crank it up so you can hear the riffs. Rock and Roll lives. Ground Control to Major Tom.
I saw an earthquake once that changed my mind about stuff. Rocks are rocks and ground is ground, and when you go in the water the rules change. But it's orderly. When in Rome, grope the Romans, and they'll grope you. Sometimes the Cosmic Muffin changes the rules.
Everything was pale gold-white because of the dim moon. Blue green lights at midnight, across a broad expanse of wild orchids--they grow like grass on the Hilo side of the Big Island. The land seems almost level, but we lived at about fifteen hundred feet elevation or so, on the slope of Moana Kea. Or maybe it was Moana Loa. One of the Moanas. From our house the land seemed level, because the gentle slope of the mountain's side was so unrippled, like a slanted prairie. The wild orchids were maybe eighteen inches high, and grew as dense as good wheat for thousands of acres in all directions. A mile downhill from us, and near to the ocean, was a strip of macadamia trees, part of a local orchard. On the other side of the order were some farm houses, with banana trees growing in the planting spaces running along their porches. I say porches because all the houses had large, covered porches. Each house's yard was about a two-hundred foot square, and the property squares ran along beside the water for miles in either direction. North along the coast only a few miles was Hilo. Around the bend to the south you eventually get to the leeward side, to Kona.
We were almost asleep when the house awoke--it groaned like a live thing. I could actually feel it quiver. Seven of us lived in the house--a married couple and their two adolescent daughters, me, an exjarhead named Curtiss, and a hippy named Brent. We all went to the windward windows, looking out across the orchids. The macadamia trees were a dark line between the pale expanse of orchids and the sea. The old moon was behind us, to the south and east, and the sea was the color of an old rifle barrel--grey and slick. Pale blue clouds were small patches in the sky, and the stars glared.
Above the line of macadamia trees, huge glowing blue/white balls bounced on some invisible thing above the macadamia trees. I was transfixed by the image.The fields of pale orchids rippled under subtle puffs of wind from the shoreline. I could hear the breakers, smell electric salt. The house groaned again, and began to tremble. The macadamia trees heaved—I saw them move and didn't want to admit it. The rules had just changed.
The expanse of land holding the thousands of acres of orchids turned liquid, began to float before my very eyes. Pali shuddered, a wave of land radiated from a point in the macadamia orchard. The wave came up the hill at an alarming rate. It charged, covered the mile or so from the in orchard to the house in a matter of seconds. I could already see a second wave coming before the first one arrived. The house screamed and shuddered. I’m not a superstitious man. I did hear Pali whisper to me—so soft, and such a low frequency that my human ears didn’t hear her voice, but I felt her trembling with my entire body. The house creaked, surfed over the wave as it passed us, a rolling motion. That first wave was about three feet high. So was the next one. Several more. The house mumbled and groaned constantly throughout the rest of the night. More burnt salt. The pale floating lights were gone. The waves of land stopped coming, but nobody went back to bed.
The electricity never did go off. At some point the house stopped mumbling, and groaned only when the waves of land passed under us.
I like earthquakes better than I like tornados. With tornados you can always harbor the illusion of survival. The twisting finger of the funnel might not reach out for you in particular, but you never know, and have to stay on your toes until it leaves the area. Nerve wracking. But the earthquake changes the rules that let you distinguish between liquids and solid ground. You might as well surrender at once, enjoy the ride. It will touch you. The weight and mass of the entire earth wil focus on you for those few heartbeats, and you wil experience with perfect clarity the mass of your ass on a scale of one to 300 gigazillion.
More internet radio. Rock and roll forever.
EOM
I saw an earthquake once that changed my mind about stuff. Rocks are rocks and ground is ground, and when you go in the water the rules change. But it's orderly. When in Rome, grope the Romans, and they'll grope you. Sometimes the Cosmic Muffin changes the rules.
Everything was pale gold-white because of the dim moon. Blue green lights at midnight, across a broad expanse of wild orchids--they grow like grass on the Hilo side of the Big Island. The land seems almost level, but we lived at about fifteen hundred feet elevation or so, on the slope of Moana Kea. Or maybe it was Moana Loa. One of the Moanas. From our house the land seemed level, because the gentle slope of the mountain's side was so unrippled, like a slanted prairie. The wild orchids were maybe eighteen inches high, and grew as dense as good wheat for thousands of acres in all directions. A mile downhill from us, and near to the ocean, was a strip of macadamia trees, part of a local orchard. On the other side of the order were some farm houses, with banana trees growing in the planting spaces running along their porches. I say porches because all the houses had large, covered porches. Each house's yard was about a two-hundred foot square, and the property squares ran along beside the water for miles in either direction. North along the coast only a few miles was Hilo. Around the bend to the south you eventually get to the leeward side, to Kona.
We were almost asleep when the house awoke--it groaned like a live thing. I could actually feel it quiver. Seven of us lived in the house--a married couple and their two adolescent daughters, me, an exjarhead named Curtiss, and a hippy named Brent. We all went to the windward windows, looking out across the orchids. The macadamia trees were a dark line between the pale expanse of orchids and the sea. The old moon was behind us, to the south and east, and the sea was the color of an old rifle barrel--grey and slick. Pale blue clouds were small patches in the sky, and the stars glared.
Above the line of macadamia trees, huge glowing blue/white balls bounced on some invisible thing above the macadamia trees. I was transfixed by the image.The fields of pale orchids rippled under subtle puffs of wind from the shoreline. I could hear the breakers, smell electric salt. The house groaned again, and began to tremble. The macadamia trees heaved—I saw them move and didn't want to admit it. The rules had just changed.
The expanse of land holding the thousands of acres of orchids turned liquid, began to float before my very eyes. Pali shuddered, a wave of land radiated from a point in the macadamia orchard. The wave came up the hill at an alarming rate. It charged, covered the mile or so from the in orchard to the house in a matter of seconds. I could already see a second wave coming before the first one arrived. The house screamed and shuddered. I’m not a superstitious man. I did hear Pali whisper to me—so soft, and such a low frequency that my human ears didn’t hear her voice, but I felt her trembling with my entire body. The house creaked, surfed over the wave as it passed us, a rolling motion. That first wave was about three feet high. So was the next one. Several more. The house mumbled and groaned constantly throughout the rest of the night. More burnt salt. The pale floating lights were gone. The waves of land stopped coming, but nobody went back to bed.
The electricity never did go off. At some point the house stopped mumbling, and groaned only when the waves of land passed under us.
I like earthquakes better than I like tornados. With tornados you can always harbor the illusion of survival. The twisting finger of the funnel might not reach out for you in particular, but you never know, and have to stay on your toes until it leaves the area. Nerve wracking. But the earthquake changes the rules that let you distinguish between liquids and solid ground. You might as well surrender at once, enjoy the ride. It will touch you. The weight and mass of the entire earth wil focus on you for those few heartbeats, and you wil experience with perfect clarity the mass of your ass on a scale of one to 300 gigazillion.
More internet radio. Rock and roll forever.
EOM
Friday, August 27, 2004
New Terms, too
Remission.
This word is an attempt at humor. Maybe it's just an expression of irony. Some cancers are curable, some aren't--Myeloma isn't. Remission in the case of Myeloma is the period between one's last bout with chemotherapy and one of the medical events I described in my last entry, or else some other medical event I haven't yet written down here.
I'm in remission. I'm done with chemotherapy, and looking toward a significant medical procedure. I guess I haven't actually talked about the transplant yet. I'm in line for a peripheral autologous stem-cell transplant. I'll go to Seattle for about three months to get this done. It looks like I'll go up there sometime in September.
The docs there will install a Hickman Catheter in my chest. Over the period of a few days they'll use it to withdraw a quantity of my blood, from which they will extract the some blood cells, clean them up, process them to recover the stem-cells and eliminate any stray myeloma cells that might be there, then freeze these cells, so they can store them for a while. Then they'll hit me with chemicals and /or radiation, which will pretty much sterilize my blood and bone--the immune system will be totally destroyed. Then they'll put the stem cells back into my body. The stem cells will differentiate, then begin to reproduce, and eventually rebuild my immune system.
While this is happening, I'll live in an isolation ward. People will put on gowns and wear masks when they come to visit. I will be weak, and need a nurse to take care of me for a while. Mucus membranes will slough, taste buds will get a chemical thrill, hair falls out. All that. I'll be in the isolation ward for a few weeks. I may develop an attitude problem off this phase of my treatment. It might take as long as a year before my immune system recovers.
According to the stats that describe the state of the art, I'll be symptom free for maybe three or so years. Eventually the Myeloma cells will return. I have a few other temporary remedies at my disposal, but they will only stall the process. I have spent the past three or four months coming to grips with these details. This is where irony blends into that sort of gentle cancer humor I'm learning to appreciate. The word survivor has been re-defined, for example. Optimism has blended shades of meaning, too. Right now, on account of how medical research is still leaping an bounding, optimism is still connected to survival. For example, in three years, someone might develop a vaccine that renders myeloma a mere nuisance. I'm still optimistic. Later on in the process, I may let go of the optimism, and work on the finer details that attend the notion of acceptance. You can extrapolate all that on your own time. I've got all this stuff in the bag already.
Needless to say this is harder on RedBud than it is on me.
I did time on the PICC line this summer. A PICC line was inserted into a vien in my upper arm, and its tip stopped in the large vein a couple of inches above my heart. A valve on the running end of an external infusion line dangled from my arm. I wore a cuff made of cotton mesh on my upper arm to stow and protect the valve when it wasn't in use. I plugged a chemical bag into the valve once a month. I wore the bag for 96 hours. In the bag with the chemicals was a rather expensive in fusion pump. I slept with the pump like it was a newborn baby. A little green LED on the pump blinked every two seconds to let me know it was still alive.
I got a thrombosis during the first infusion cycle. That was sort of exciting. Had to pull the PICC line and take blood thinners for a while. That sucked, actually. I spent a few days in Portland, in ICU, while they shot me up with stuff. It was sort of uncomfortable when the clots were in the vien. The guy that read the ultra sound images said the vein had begun to clot from the insertion point all the way down into my chest as far as he could see. Felt like steel bands on my arm and chest. In the hospital, I had to be hooked up to an IV; had to push the IV stand around with me to the toilet. That first two days, I wasn't supposed to walk to the toilet, but I couldn't deal with the goddam bedpans in any meaningful way. Most of the major discomfort went away the second day, but I had to hang around for a few days to make sure all the clots were gone, and so the docs could figure out how to deal with this development. I got three weeks off from the PICC line for that, but had to have another one inserted for the next infustion cycle.
Anyhow, I'm done with all that PICC line stuff, and I won't have anymore chemotherapy until after they draw the stem cells in Seattle. I'm in remission.
This word is an attempt at humor. Maybe it's just an expression of irony. Some cancers are curable, some aren't--Myeloma isn't. Remission in the case of Myeloma is the period between one's last bout with chemotherapy and one of the medical events I described in my last entry, or else some other medical event I haven't yet written down here.
I'm in remission. I'm done with chemotherapy, and looking toward a significant medical procedure. I guess I haven't actually talked about the transplant yet. I'm in line for a peripheral autologous stem-cell transplant. I'll go to Seattle for about three months to get this done. It looks like I'll go up there sometime in September.
The docs there will install a Hickman Catheter in my chest. Over the period of a few days they'll use it to withdraw a quantity of my blood, from which they will extract the some blood cells, clean them up, process them to recover the stem-cells and eliminate any stray myeloma cells that might be there, then freeze these cells, so they can store them for a while. Then they'll hit me with chemicals and /or radiation, which will pretty much sterilize my blood and bone--the immune system will be totally destroyed. Then they'll put the stem cells back into my body. The stem cells will differentiate, then begin to reproduce, and eventually rebuild my immune system.
While this is happening, I'll live in an isolation ward. People will put on gowns and wear masks when they come to visit. I will be weak, and need a nurse to take care of me for a while. Mucus membranes will slough, taste buds will get a chemical thrill, hair falls out. All that. I'll be in the isolation ward for a few weeks. I may develop an attitude problem off this phase of my treatment. It might take as long as a year before my immune system recovers.
According to the stats that describe the state of the art, I'll be symptom free for maybe three or so years. Eventually the Myeloma cells will return. I have a few other temporary remedies at my disposal, but they will only stall the process. I have spent the past three or four months coming to grips with these details. This is where irony blends into that sort of gentle cancer humor I'm learning to appreciate. The word survivor has been re-defined, for example. Optimism has blended shades of meaning, too. Right now, on account of how medical research is still leaping an bounding, optimism is still connected to survival. For example, in three years, someone might develop a vaccine that renders myeloma a mere nuisance. I'm still optimistic. Later on in the process, I may let go of the optimism, and work on the finer details that attend the notion of acceptance. You can extrapolate all that on your own time. I've got all this stuff in the bag already.
Needless to say this is harder on RedBud than it is on me.
I did time on the PICC line this summer. A PICC line was inserted into a vien in my upper arm, and its tip stopped in the large vein a couple of inches above my heart. A valve on the running end of an external infusion line dangled from my arm. I wore a cuff made of cotton mesh on my upper arm to stow and protect the valve when it wasn't in use. I plugged a chemical bag into the valve once a month. I wore the bag for 96 hours. In the bag with the chemicals was a rather expensive in fusion pump. I slept with the pump like it was a newborn baby. A little green LED on the pump blinked every two seconds to let me know it was still alive.
I got a thrombosis during the first infusion cycle. That was sort of exciting. Had to pull the PICC line and take blood thinners for a while. That sucked, actually. I spent a few days in Portland, in ICU, while they shot me up with stuff. It was sort of uncomfortable when the clots were in the vien. The guy that read the ultra sound images said the vein had begun to clot from the insertion point all the way down into my chest as far as he could see. Felt like steel bands on my arm and chest. In the hospital, I had to be hooked up to an IV; had to push the IV stand around with me to the toilet. That first two days, I wasn't supposed to walk to the toilet, but I couldn't deal with the goddam bedpans in any meaningful way. Most of the major discomfort went away the second day, but I had to hang around for a few days to make sure all the clots were gone, and so the docs could figure out how to deal with this development. I got three weeks off from the PICC line for that, but had to have another one inserted for the next infustion cycle.
Anyhow, I'm done with all that PICC line stuff, and I won't have anymore chemotherapy until after they draw the stem cells in Seattle. I'm in remission.
Sunday, August 08, 2004
New terms
Below are a few new terms I learned during the past few months. The world they describe didn't really exist until I learned I had cancer. I've done my homework, and I know about these things, but they don't really come into focus until their time is ripe.
Event Free Survival Time.
Overall Survival Time.
Treatment Objectives:
1. Extending disease-free survival and the length of life;
2. Providing lasting relief of pain and other disease symptoms.
Terms:
Relapse: The disease begins to progress again.
Refractory: The disease doesn’t respond to treatment.
Palliative: The treatment is designed to reduce the symptoms and pain associated with the disease rather than to extend the survival of the patient.
Conventional Therapy: Cyclic treatment given to expose and kill myeloma cells. Conventional chemotherapy is typically given to older patients, or to patients who will undergo SCT
Salvage Therapy: Treatment for patients who have not responded to primary therapy or who experience relapsed disease. High dose dexamathasone alone or in combination with other drugs.
Radiation Therapy: To damage cancer cells and prevent them from growing. To stop bone damage, and/or in conjunction with Stem Cell Transplants.
Supportive Therapy: Address the symptoms and complications of the disease.
Event Free Survival Time.
Overall Survival Time.
Treatment Objectives:
1. Extending disease-free survival and the length of life;
2. Providing lasting relief of pain and other disease symptoms.
Terms:
Relapse: The disease begins to progress again.
Refractory: The disease doesn’t respond to treatment.
Palliative: The treatment is designed to reduce the symptoms and pain associated with the disease rather than to extend the survival of the patient.
Conventional Therapy: Cyclic treatment given to expose and kill myeloma cells. Conventional chemotherapy is typically given to older patients, or to patients who will undergo SCT
Salvage Therapy: Treatment for patients who have not responded to primary therapy or who experience relapsed disease. High dose dexamathasone alone or in combination with other drugs.
Radiation Therapy: To damage cancer cells and prevent them from growing. To stop bone damage, and/or in conjunction with Stem Cell Transplants.
Supportive Therapy: Address the symptoms and complications of the disease.
Friday, August 06, 2004
The point of the log
The first one is the hardest.
Summer here in southern Oregon is neon green when it first emerges from Spring. I like it just fine. I'm transplanted from California.
Life is a rope and a rope comes from threads. I wanted to write about how Multiple Myeloma changed my life. Problem is that it didn't make a huge change in what I do, but it did modify the way I look at what I do. No surprises there. But I don't think I can write it all--all those little threads are important, and looking at the rope is complicated, because I can't seem to see both the threads and the rope at the same time.
Our rental house overlooks the Rogue River. We're in a downstream sort of neighborhood, a mile or so downstream from the little town of Gold Hill. Gold Hill is a river town, with three restaurants and a Harley shop. Two of the restaurants are breakfast places, and the third serves excellent Mexican food. I could throw a rock, and on a lucky day, maybe I could hit the river from my back yard. It's for certain I could pick off the rafters with my wrist rocket--but I wouldn't. Not me. The walls in the living room and kithchen are all glass, so, even though our place is sort of small, we have decent ambience...brings the yard into the house, so to speak.
The landlord uses the 150 foot space between the house and the river as his landfill project, so part of our ambience include his piles of brush. In the winter he burns the garbage there, too. On the other hand he keeps the dump pretty tidy.
Out neighbors are accommodating. This is closer to people than RedBud and I have ever lived, but we are adapting. The landlord--his name is Bud--also owns a small place right in front of us. An experiment with the previous rentor was unsuccesful, and he's gone. He was a druggie, but a nice enough kid. About two weeks after they moved in he brought his project car over and dismantled it in the driveway, leaveing parts in stacks all around it. His girlfriend made him pick up the parts and pull the car into their carport. Shortly after that they had a spat. He broke the glass windon in the front door. The deputies arrived shortly thereafter, and looked on while she removed her belongings. He got notice from Bud some weeks later, to move, but he sort of tried to ignore it. Didn't work in the long run. He made friends with river trash who live a bit upstream, and they got to be a problem--people I don't know walking through the yard to the river, all hours of the day and night, knocking on his door at midnite or two in the afternoon, stuff like that.
Anyhow, he's gone, and a new couple moved in. He works nights. They don't play loud music. He claims they are spades players.
I found out about the MM in May, this year (2004). I had broken my hand in a freak accident, and radiolist told me the bone looked funny, and made sure I was having my regular doc follow up on it. Lindy Gomez at the Roseburd VA did her job the right way. In short order I was up a Portland, getting handled by the cancer people from the OHSU, or whatever it's called. They are linked to the VA both literally and figuratively--literally by a covered ramp.
I went to chemotherapy. Four months on a PICC line. Now I'm in remission, waiting for the final word on a stem-cell transplant. I'll do that in Seattle.
The chemotherapy wasn't as bad for me as I suppose it is for many people, but it was a roller coaster ride nevertheless. Kicked my ass pretty good, is what it did. Hair loss and pumpkin face, too, but by the time the fourth month came around those were the most noisome of the symptoms. Fatigue and out of control appetite were my companions. At first the appetite thing was okay, because I was losing a few pounds to the VAD regimine, a good thing.
But once the cancer was under control the weight loss stopped, and the appetite only slowed a little. I felt stuffed all the time. Anyhow that's done. I'm still weak, but I feel better than I have in a long time. My other blood problem used to kick my ass daily, but the steroids seem to have brought it under control. This is a good thing--no cappilliary bleeding and its associated pain for me to deal with.
I kept a fairly detail journal of all these happenings, so I'm not going to go into any more detail here in this blog. I do hope to keep up with my Seattle goings on, if I can figure out how to do it from Seattle. We are taking RedBud's laptop--a Mac--with us. I am not a Mac-qualified operator.
A stem-cell transplant is a big deal. I don't know how much it will cost the government to do this, but I'm grateful to them for doing their job on me. Briefly, persons with MM live about seven months after they discover they have it. This disease sucks your bones dry, and you die from associated pathologies, such as spinal collapse, kidney and liver failure, and other stuff. People with treatment live a few years longer. Right now about fifty percent of us hit the 5-7 year mark. A smaller lucky few of us last quite a bit longer, for various reasons. A statistically insignificant few of us who have alleogeneic stem cell transplants may be cured. I'm getting an autologous stem cell transplant.
Alleogeneic transplants require a donor with a near perfect HLA blood match...this takes a lot of luck in the stem-cell donor data base search, or a twin. Mortality from this process is high. Anyhow, I don't have a twin, so I'm going for the other one. New research is hopeful, and if I last five years, there may actually be a cure for this shit. Every day is a blessing, then.
I'm becoming familiar with a whole new set of terms, which I shall introduce in my next blog session.
Summer here in southern Oregon is neon green when it first emerges from Spring. I like it just fine. I'm transplanted from California.
Life is a rope and a rope comes from threads. I wanted to write about how Multiple Myeloma changed my life. Problem is that it didn't make a huge change in what I do, but it did modify the way I look at what I do. No surprises there. But I don't think I can write it all--all those little threads are important, and looking at the rope is complicated, because I can't seem to see both the threads and the rope at the same time.
Our rental house overlooks the Rogue River. We're in a downstream sort of neighborhood, a mile or so downstream from the little town of Gold Hill. Gold Hill is a river town, with three restaurants and a Harley shop. Two of the restaurants are breakfast places, and the third serves excellent Mexican food. I could throw a rock, and on a lucky day, maybe I could hit the river from my back yard. It's for certain I could pick off the rafters with my wrist rocket--but I wouldn't. Not me. The walls in the living room and kithchen are all glass, so, even though our place is sort of small, we have decent ambience...brings the yard into the house, so to speak.
The landlord uses the 150 foot space between the house and the river as his landfill project, so part of our ambience include his piles of brush. In the winter he burns the garbage there, too. On the other hand he keeps the dump pretty tidy.
Out neighbors are accommodating. This is closer to people than RedBud and I have ever lived, but we are adapting. The landlord--his name is Bud--also owns a small place right in front of us. An experiment with the previous rentor was unsuccesful, and he's gone. He was a druggie, but a nice enough kid. About two weeks after they moved in he brought his project car over and dismantled it in the driveway, leaveing parts in stacks all around it. His girlfriend made him pick up the parts and pull the car into their carport. Shortly after that they had a spat. He broke the glass windon in the front door. The deputies arrived shortly thereafter, and looked on while she removed her belongings. He got notice from Bud some weeks later, to move, but he sort of tried to ignore it. Didn't work in the long run. He made friends with river trash who live a bit upstream, and they got to be a problem--people I don't know walking through the yard to the river, all hours of the day and night, knocking on his door at midnite or two in the afternoon, stuff like that.
Anyhow, he's gone, and a new couple moved in. He works nights. They don't play loud music. He claims they are spades players.
I found out about the MM in May, this year (2004). I had broken my hand in a freak accident, and radiolist told me the bone looked funny, and made sure I was having my regular doc follow up on it. Lindy Gomez at the Roseburd VA did her job the right way. In short order I was up a Portland, getting handled by the cancer people from the OHSU, or whatever it's called. They are linked to the VA both literally and figuratively--literally by a covered ramp.
I went to chemotherapy. Four months on a PICC line. Now I'm in remission, waiting for the final word on a stem-cell transplant. I'll do that in Seattle.
The chemotherapy wasn't as bad for me as I suppose it is for many people, but it was a roller coaster ride nevertheless. Kicked my ass pretty good, is what it did. Hair loss and pumpkin face, too, but by the time the fourth month came around those were the most noisome of the symptoms. Fatigue and out of control appetite were my companions. At first the appetite thing was okay, because I was losing a few pounds to the VAD regimine, a good thing.
But once the cancer was under control the weight loss stopped, and the appetite only slowed a little. I felt stuffed all the time. Anyhow that's done. I'm still weak, but I feel better than I have in a long time. My other blood problem used to kick my ass daily, but the steroids seem to have brought it under control. This is a good thing--no cappilliary bleeding and its associated pain for me to deal with.
I kept a fairly detail journal of all these happenings, so I'm not going to go into any more detail here in this blog. I do hope to keep up with my Seattle goings on, if I can figure out how to do it from Seattle. We are taking RedBud's laptop--a Mac--with us. I am not a Mac-qualified operator.
A stem-cell transplant is a big deal. I don't know how much it will cost the government to do this, but I'm grateful to them for doing their job on me. Briefly, persons with MM live about seven months after they discover they have it. This disease sucks your bones dry, and you die from associated pathologies, such as spinal collapse, kidney and liver failure, and other stuff. People with treatment live a few years longer. Right now about fifty percent of us hit the 5-7 year mark. A smaller lucky few of us last quite a bit longer, for various reasons. A statistically insignificant few of us who have alleogeneic stem cell transplants may be cured. I'm getting an autologous stem cell transplant.
Alleogeneic transplants require a donor with a near perfect HLA blood match...this takes a lot of luck in the stem-cell donor data base search, or a twin. Mortality from this process is high. Anyhow, I don't have a twin, so I'm going for the other one. New research is hopeful, and if I last five years, there may actually be a cure for this shit. Every day is a blessing, then.
I'm becoming familiar with a whole new set of terms, which I shall introduce in my next blog session.
Friday, July 30, 2004
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