Tuesday, April 06, 2004
Day 9 - Tuesday
I am exhausted beyond belief. The light is on in Gary's room, and I tell him I'm going to take a short nap. Robert is somewhere out in the hall squirreling arround. I cover my head with one of the blankets and plop the chair back. Within 20 minutes, I wake up to find the lights out and Robert at the control desk. It's sort of a shocker.
I'm hungry and cramped up. I decide to go to the college and get something to eat. There's a rumor they have a really nice all-night cafe across the skywalk. Robert says he's going to clean Gary up while I'm gone. I have no idea what his bio status is -- that is, whether he's been pooping himself or not. I've watched every organ shut down on the monitors. His stomach isn't working, but they've been giving him sugar water in his IV. The water part seems to be going directly into his belly. They've got a catheter in him, and he's produced very little urine, so his kidneys aren't working. His liver is, of course, non-functioning. Still, his heart is strong and has a very regular rhythm, and his breathing seems to be regular, ahead of the machine.
The all-night cafe isn't what it's cracked up to be, and I eat some fruit and what I can scavange from there. I get coffee and head back to the room. Before I can get there, I get a call on my cell from ICU. They say I need to get there now. When I arrive, Gary's not doing well at all. His numbers are all bottoming out. I hold his hand and tell him to do what he needs to, that I'm there. Doctors come in and can't find a pulse. The machines show nothing. Robert insists he feels something. He changes out the connections on the EKG. There is a faint beat to his heart. He lasts a few more minutes. Finally, they turn everything off. It's 3AM.
I tell them to remove all the machinery and I'll be back in 10 minutes. I went out to call Mom and tell her, and returned to say my final goodbye to Gary. As I laid my head on his chest and said goodbye, I heard a final sigh. A last expulsion of air from his lungs.
This was not how things were supposed to turn out. I meant to bring him back home, alive, one way or another. Over the years, Gary and I have had our differences, our wars, our threats, long conversations, and incoherant ramblings. We've been fishing, hunting and, our favorite, travelling in the West. I just never thought this would be our last trip.
I went back to the hotel at 6AM and collapsed into the bed, awakening at noon. What to do now? I went to the restaurant in the parking lot of the hotel and had potatoe pancakes and sausage (weird, but good). I drove mindlessly around Portland. I talked to people on the phone. I went back to the hotel and started packing.
The hospital was anxious to get rid of the body, and I had to figure out how to get him back to San Antonio. Mom called mortuaries. Nothing seemed to work. The guy at the VA, David, was particularly obstinate and mean to Me-Ma. He seemed to want everything recorded over the phone and she didn't quite get it -- so he decided to be an ass. Finally, I got the two of them working together and at least got authority to get Gary home however I could. I told David I'd come in tomorrow to figure out what we would do. I explained that this case wasn't typical because of the distance.
I spent a lot of time on the phone, and then finally, fell to sleep.
I'm hungry and cramped up. I decide to go to the college and get something to eat. There's a rumor they have a really nice all-night cafe across the skywalk. Robert says he's going to clean Gary up while I'm gone. I have no idea what his bio status is -- that is, whether he's been pooping himself or not. I've watched every organ shut down on the monitors. His stomach isn't working, but they've been giving him sugar water in his IV. The water part seems to be going directly into his belly. They've got a catheter in him, and he's produced very little urine, so his kidneys aren't working. His liver is, of course, non-functioning. Still, his heart is strong and has a very regular rhythm, and his breathing seems to be regular, ahead of the machine.
The all-night cafe isn't what it's cracked up to be, and I eat some fruit and what I can scavange from there. I get coffee and head back to the room. Before I can get there, I get a call on my cell from ICU. They say I need to get there now. When I arrive, Gary's not doing well at all. His numbers are all bottoming out. I hold his hand and tell him to do what he needs to, that I'm there. Doctors come in and can't find a pulse. The machines show nothing. Robert insists he feels something. He changes out the connections on the EKG. There is a faint beat to his heart. He lasts a few more minutes. Finally, they turn everything off. It's 3AM.
I tell them to remove all the machinery and I'll be back in 10 minutes. I went out to call Mom and tell her, and returned to say my final goodbye to Gary. As I laid my head on his chest and said goodbye, I heard a final sigh. A last expulsion of air from his lungs.
This was not how things were supposed to turn out. I meant to bring him back home, alive, one way or another. Over the years, Gary and I have had our differences, our wars, our threats, long conversations, and incoherant ramblings. We've been fishing, hunting and, our favorite, travelling in the West. I just never thought this would be our last trip.
I went back to the hotel at 6AM and collapsed into the bed, awakening at noon. What to do now? I went to the restaurant in the parking lot of the hotel and had potatoe pancakes and sausage (weird, but good). I drove mindlessly around Portland. I talked to people on the phone. I went back to the hotel and started packing.
The hospital was anxious to get rid of the body, and I had to figure out how to get him back to San Antonio. Mom called mortuaries. Nothing seemed to work. The guy at the VA, David, was particularly obstinate and mean to Me-Ma. He seemed to want everything recorded over the phone and she didn't quite get it -- so he decided to be an ass. Finally, I got the two of them working together and at least got authority to get Gary home however I could. I told David I'd come in tomorrow to figure out what we would do. I explained that this case wasn't typical because of the distance.
I spent a lot of time on the phone, and then finally, fell to sleep.
Monday, April 05, 2004
Day 8 - Monday
As I said, around Midnight I drove back to the hospital. I went in through the night entrance. I ran into Pam who was just leaving and she said she had tried to call me on my cell just has he had taken a turn for the worse. I never got the call. She was headed back up to 9D with his now empty bed. Once inside ICU, I saw Gary, just outside his room and heaving. He was non responsive and breathing hard. I told him I was there, and we were going to do everything we could to get him better. I met Dr. Hamm and Dr. Wheeler. I was a bit surprised to see Dr. Hamm. They introduced me to the ICU team and we got ready to call Mom and Me-Ma. As next of kin, they are the ones responsible for making the next few decisions.
After the conference call where the Docs explained the options to them, they decided that they wanted to do intebation and insert the breathing tube, as well as giving him a course of IV antibiotics and fluids. They wanted to do everything possible to save his life. I generally agreed with this, except I had qualms about the breathing tube, which were later resolved when I saw how much it helped reduce the stress on him.
After the decisions were made, the team went in to action. Upon leaving the conference call, I found a resperatory therapist and a nurse standing over him. They were saying that this was the wrong course of action. I knew he could hear them, even if they treated him like a vegetable. There was a general air of angst in the room. I came in and stopped everything. I told them that this was not their decision, and it was wrong for them to talk that way, especially in front of him. They were free to have their opinions, but not at his expense. We were doing this for a reason, and we all needed to be aware that he was still alive. I was, to say the least, angry. I asked the resperatory therapist why she believed it was the wrong thing. She said she had read his file. I said I knew him all my life, and that took precedence over any file she had. I said I was going to stay with him for as long as he was here, and that I would appreciate her cooperation in this difficult time. After my rant, she immediately backed down. They inserted the tube, and she went off and got me a really comfy lazy-boy type chair, and some blankets and pillows.
The head of ICU showed up and said he totally disagreed with what we were doing. He seemed like a really negative, tired, grumpy little man, who shouldn't be working with Veterans. Once again, I told him that it wasn't his choice, nor mine really. But this was the course we were going to take, and we would pursue it with all optimism and due dilligence. I also told him that I did not in any way want Gary to be in any pain at all. He's had enough of that. Dr. Wheeler said they had authorized any pain medication necessary. The respratory therapist came back in and with the nurse there, said the tube didn't matter that much because, looking at his stats on the computer, he would "pronounce" himself soon anyway.
So this is how it was. Me, Gary and the ICU nurse sitting, watching monitors and trying to determine if he was in any pain. For the first few hours, he seemed comforable as could be possible. The nurse (I think her name was Irma, but I'm not sure) was exceptionally nice and said he must be a good man if he had someone who cared so much. We talked for a while about him and about home. At 7AM, the changing of the guard occured, and we drew a male ICU nurse, who didn't speak to me for hours. He didn't even introduce himself. I don't think he agreed with the breathing tube either. I noticed that at some point someone had changed his wrist band to read "DNR." That wasn't there before and bothered me, but I didn't say anything.
Finally, I the nurse decided he'd talk to me. We discussed the breathing tube, and I explained to him why we decided to do it. He said "so this must be one of those Texas matriarchy things that I've heard about." I told him it was, and if he knew what was good for him, he'd take care of Gary with all due respect and responsibility, or he'd have a bunch of powerful Texas women to answer to.
At around 9AM, Dr. Molly -- the head of ICU, by my understanding -- came by with a clutch of students. She wanted to talk, wisely outside of the room, about the DNR order. I told her about the bracelet that miraculaously changed, and that I wasn't sure it was a good thing. The family had not yet made our wishes known on this topic. She was bright-eyed and understanding, obviously a good teacher and was "on stage." She wanted to call Mom and talk to her about it. I gave her the number and told her that I would call them and let them know she'd be calling around 1PM CST.
I went outside and talked to Mom -- warning her of the impending call, and that they should discuss the DNR issue. I had a crappy lunch -- Oregon chicken fried meat at the Canteen. There was a guy there selling buttons and pins. Believe it or not, I found two for the 1/9: Walking Dead. I bought them both. One for me and one for Gary. He would love it. I put mine on my jacket.
I started my period at 2PM, a week ahead of schedule. I didn't bring anything with me, for some reason, when I left the hotel. I had to go buy pads at the commissary and stash them in the car. All I had was a pen and a notepad. And my jacket didn't seem warm enough, although it had been hot all week.
I talked to Gary almost constantly while I was in the room (even letting him know that the Spurs had beat the Lakers). I knew he could hear me. At about 4PM, I decided that Mom and Me-Ma should get the opportunity to talk to him as well. I told the nurse and he quickly re-routed phones (you couldn't make long distance calls from the room), and called Mom and Me-Ma, transferring the call to his room, where I held the phone to his ear so he could hear them. After talking with them, Gary's blood pressure and heart rate went up to normal levels for about an hour. "Rallying for Mom, eh?" said the nurse. "Don't count it out," I said.
The nurse and I worked with Gary throughout the day, determining his pain level. I would ask him if he was in any pain, and he'd touch his stomach if he was. We tried several different medications, waited hours, and asked again. We finally found a drug that seemed to work, and the nurse rigged up a drip of it, so that he'd have a constant supply. After that, he didn't respond to my questions about pain. That was good.
Soon, it was time for the changing of the guard again. It must have been around 6PM. This time, we drew Robert, a male nurse from Florida who was most likely gay, by his demeanor. But he was kind. He had moved here recently to get out of the Florida "scene" and was trying to buy a house. He didn't seem to need any explanations. We watched the monitors, and he explained to me what several of them were.
9:25PM
Pulse = 54
Blood Pressure = 90/40
11:00PM
Pulse = 57
Blood Pressure = 90/30
Robert also explained that Gary was essentially breathing on his own, with the assistance of the machine. It was set to force air into his lungs 13 times per minute, but he had been breathing about 30 times per minute, which is normal. He was, however, filling with fluid, and you could almost watch his abdomen get larger. We were losing him.
At 11:15PM, Robert went to lunch, and another nurse sat in.
After the conference call where the Docs explained the options to them, they decided that they wanted to do intebation and insert the breathing tube, as well as giving him a course of IV antibiotics and fluids. They wanted to do everything possible to save his life. I generally agreed with this, except I had qualms about the breathing tube, which were later resolved when I saw how much it helped reduce the stress on him.
After the decisions were made, the team went in to action. Upon leaving the conference call, I found a resperatory therapist and a nurse standing over him. They were saying that this was the wrong course of action. I knew he could hear them, even if they treated him like a vegetable. There was a general air of angst in the room. I came in and stopped everything. I told them that this was not their decision, and it was wrong for them to talk that way, especially in front of him. They were free to have their opinions, but not at his expense. We were doing this for a reason, and we all needed to be aware that he was still alive. I was, to say the least, angry. I asked the resperatory therapist why she believed it was the wrong thing. She said she had read his file. I said I knew him all my life, and that took precedence over any file she had. I said I was going to stay with him for as long as he was here, and that I would appreciate her cooperation in this difficult time. After my rant, she immediately backed down. They inserted the tube, and she went off and got me a really comfy lazy-boy type chair, and some blankets and pillows.
The head of ICU showed up and said he totally disagreed with what we were doing. He seemed like a really negative, tired, grumpy little man, who shouldn't be working with Veterans. Once again, I told him that it wasn't his choice, nor mine really. But this was the course we were going to take, and we would pursue it with all optimism and due dilligence. I also told him that I did not in any way want Gary to be in any pain at all. He's had enough of that. Dr. Wheeler said they had authorized any pain medication necessary. The respratory therapist came back in and with the nurse there, said the tube didn't matter that much because, looking at his stats on the computer, he would "pronounce" himself soon anyway.
So this is how it was. Me, Gary and the ICU nurse sitting, watching monitors and trying to determine if he was in any pain. For the first few hours, he seemed comforable as could be possible. The nurse (I think her name was Irma, but I'm not sure) was exceptionally nice and said he must be a good man if he had someone who cared so much. We talked for a while about him and about home. At 7AM, the changing of the guard occured, and we drew a male ICU nurse, who didn't speak to me for hours. He didn't even introduce himself. I don't think he agreed with the breathing tube either. I noticed that at some point someone had changed his wrist band to read "DNR." That wasn't there before and bothered me, but I didn't say anything.
Finally, I the nurse decided he'd talk to me. We discussed the breathing tube, and I explained to him why we decided to do it. He said "so this must be one of those Texas matriarchy things that I've heard about." I told him it was, and if he knew what was good for him, he'd take care of Gary with all due respect and responsibility, or he'd have a bunch of powerful Texas women to answer to.
At around 9AM, Dr. Molly -- the head of ICU, by my understanding -- came by with a clutch of students. She wanted to talk, wisely outside of the room, about the DNR order. I told her about the bracelet that miraculaously changed, and that I wasn't sure it was a good thing. The family had not yet made our wishes known on this topic. She was bright-eyed and understanding, obviously a good teacher and was "on stage." She wanted to call Mom and talk to her about it. I gave her the number and told her that I would call them and let them know she'd be calling around 1PM CST.
I went outside and talked to Mom -- warning her of the impending call, and that they should discuss the DNR issue. I had a crappy lunch -- Oregon chicken fried meat at the Canteen. There was a guy there selling buttons and pins. Believe it or not, I found two for the 1/9: Walking Dead. I bought them both. One for me and one for Gary. He would love it. I put mine on my jacket.
I started my period at 2PM, a week ahead of schedule. I didn't bring anything with me, for some reason, when I left the hotel. I had to go buy pads at the commissary and stash them in the car. All I had was a pen and a notepad. And my jacket didn't seem warm enough, although it had been hot all week.
I talked to Gary almost constantly while I was in the room (even letting him know that the Spurs had beat the Lakers). I knew he could hear me. At about 4PM, I decided that Mom and Me-Ma should get the opportunity to talk to him as well. I told the nurse and he quickly re-routed phones (you couldn't make long distance calls from the room), and called Mom and Me-Ma, transferring the call to his room, where I held the phone to his ear so he could hear them. After talking with them, Gary's blood pressure and heart rate went up to normal levels for about an hour. "Rallying for Mom, eh?" said the nurse. "Don't count it out," I said.
The nurse and I worked with Gary throughout the day, determining his pain level. I would ask him if he was in any pain, and he'd touch his stomach if he was. We tried several different medications, waited hours, and asked again. We finally found a drug that seemed to work, and the nurse rigged up a drip of it, so that he'd have a constant supply. After that, he didn't respond to my questions about pain. That was good.
Soon, it was time for the changing of the guard again. It must have been around 6PM. This time, we drew Robert, a male nurse from Florida who was most likely gay, by his demeanor. But he was kind. He had moved here recently to get out of the Florida "scene" and was trying to buy a house. He didn't seem to need any explanations. We watched the monitors, and he explained to me what several of them were.
9:25PM
Pulse = 54
Blood Pressure = 90/40
11:00PM
Pulse = 57
Blood Pressure = 90/30
Robert also explained that Gary was essentially breathing on his own, with the assistance of the machine. It was set to force air into his lungs 13 times per minute, but he had been breathing about 30 times per minute, which is normal. He was, however, filling with fluid, and you could almost watch his abdomen get larger. We were losing him.
At 11:15PM, Robert went to lunch, and another nurse sat in.
Sunday, April 04, 2004
Day 7 - Sunday
I got to the hospital by 8:25, and Gary was in sheer pain. I called the nurse; she called Doctors. They were on rounds. He's howling. The nurses page the doctors repeatedly. Apparently, all they get is a "we're on our way." He looks at me with white eyes and says "help me."
Mom calls at a bad time - the nurse answers and hans the phone to me Me-Ma wants to talk to him. He can say nothing truly coherant. She asks him if he's in pain. "Yes," he manages to say. She gets me on the phone and tells me I've got to get a doctor there right now. I'm doing all I can.
After I threatened to call 9-11 and get him moved to a public hospital or get some emergency service somehow, the doctors show up around 11. They tell me that the moaning and howling is because of his ecephalopathy. Patients in his condition do this, according to them, and it's not necessarily indicative of pain. He can't really communicate with me, except that he's in pain. I feel truly powerless. They take blood to check his ammonia levels.
At noon, Dr. Wheeler returns and says his levels aren't that high. I ask her if she thinks he's really in pain (he's been howling for hours now). She says she's not sure. She decides that they need to tap him to reduce the pressure. I finally meet Dr. Orloff and she assures me that they will be able to stabilize him and we'll return to SA on an ambulance flight. I need to have hospice arranged.
At 2PM, they decide to tap him. It takes almost an hour to find the right people and set up for the proceedure. They're going to do it in his room. I can't stand to see this, and Emmitt comes in to watch and give me blow-by-blow reports while I sit in a wheelchair in the hallway. In fact, it's the one I brought Gary up in yesterday. For some reason, I fix on that and roll the chair around and down the halls. They remove almost 7 liters of fluid from Gary's abdomen. Dr. Wheeler says a sample needs to be tested to see if there's an infection.
After the tap, he seems truly restful. So comfortable. I just sit and watch him sleep for a good long while. Relief.
But by 4PM, he's awake and now he's hallucinating. They move a porto-potti next to his bed because he's messed himself. I can tell it's full of blood, but the nurse thinks it's just hemmeroids. It's everywhere. On the floor. In the bed. The nurses try to clean him up and make him comfortable again.
He doesn't make much sense at all to me, and even less to the Doctors and Nurses attending him. A lot of the time, what he's talking about isn't that crazy, it's just that you have to know him to understand. He is fascinated by my hands. He holds them, open and closes my fingers, plays with my ring and watch with a look of almost astonishment. He plays with my hair and messes with my hands some more as if they are unique mechanical objects. Finally, he says "Kiss my hand and tell me goodbye. You should leave now." He repeats this over and over, until finally, I decide I should go. I kiss his hand and tell him I love him. My presence in his room seems to do nothing but agitate him.
By 7PM, I'm in the car. I don't know where to go or what to do. I go to Starbuck's and get a coffee and I wander around Barnes and Noble. I buy the Kubler-Ross book on dying, because I know I've got to steel myself. I don't really know what to expect, but It's happening. I call back to the hospital, and they say he's stable. Me and Mom go back and forth with Pam, the nurse, who says he's sleeping. I've left my cell phone number with them, and I'm exhausted.
I call Nell around 8PM and talk to her about encephalopathy and hospice. She's going to see what she can do to arrange for our arrival. I check back with the nurse at 9PM. I've talked with everyone, and no one really knows what to tell me. Finally, I try to sleep for a bit. It seems that as soon as I lie down, I get a call on my cell from Dr. Wheeler. They're going to move him to ICU and they need us to make some decisions. They're decisions I shouldn't make, but Mom and Me-Ma have had enough, I think. I can do this myself. I should get back to the hospital. It's midnight. I call Joe and decide to get back there before I call Mom.
Mom calls at a bad time - the nurse answers and hans the phone to me Me-Ma wants to talk to him. He can say nothing truly coherant. She asks him if he's in pain. "Yes," he manages to say. She gets me on the phone and tells me I've got to get a doctor there right now. I'm doing all I can.
After I threatened to call 9-11 and get him moved to a public hospital or get some emergency service somehow, the doctors show up around 11. They tell me that the moaning and howling is because of his ecephalopathy. Patients in his condition do this, according to them, and it's not necessarily indicative of pain. He can't really communicate with me, except that he's in pain. I feel truly powerless. They take blood to check his ammonia levels.
At noon, Dr. Wheeler returns and says his levels aren't that high. I ask her if she thinks he's really in pain (he's been howling for hours now). She says she's not sure. She decides that they need to tap him to reduce the pressure. I finally meet Dr. Orloff and she assures me that they will be able to stabilize him and we'll return to SA on an ambulance flight. I need to have hospice arranged.
At 2PM, they decide to tap him. It takes almost an hour to find the right people and set up for the proceedure. They're going to do it in his room. I can't stand to see this, and Emmitt comes in to watch and give me blow-by-blow reports while I sit in a wheelchair in the hallway. In fact, it's the one I brought Gary up in yesterday. For some reason, I fix on that and roll the chair around and down the halls. They remove almost 7 liters of fluid from Gary's abdomen. Dr. Wheeler says a sample needs to be tested to see if there's an infection.
After the tap, he seems truly restful. So comfortable. I just sit and watch him sleep for a good long while. Relief.
But by 4PM, he's awake and now he's hallucinating. They move a porto-potti next to his bed because he's messed himself. I can tell it's full of blood, but the nurse thinks it's just hemmeroids. It's everywhere. On the floor. In the bed. The nurses try to clean him up and make him comfortable again.
He doesn't make much sense at all to me, and even less to the Doctors and Nurses attending him. A lot of the time, what he's talking about isn't that crazy, it's just that you have to know him to understand. He is fascinated by my hands. He holds them, open and closes my fingers, plays with my ring and watch with a look of almost astonishment. He plays with my hair and messes with my hands some more as if they are unique mechanical objects. Finally, he says "Kiss my hand and tell me goodbye. You should leave now." He repeats this over and over, until finally, I decide I should go. I kiss his hand and tell him I love him. My presence in his room seems to do nothing but agitate him.
By 7PM, I'm in the car. I don't know where to go or what to do. I go to Starbuck's and get a coffee and I wander around Barnes and Noble. I buy the Kubler-Ross book on dying, because I know I've got to steel myself. I don't really know what to expect, but It's happening. I call back to the hospital, and they say he's stable. Me and Mom go back and forth with Pam, the nurse, who says he's sleeping. I've left my cell phone number with them, and I'm exhausted.
I call Nell around 8PM and talk to her about encephalopathy and hospice. She's going to see what she can do to arrange for our arrival. I check back with the nurse at 9PM. I've talked with everyone, and no one really knows what to tell me. Finally, I try to sleep for a bit. It seems that as soon as I lie down, I get a call on my cell from Dr. Wheeler. They're going to move him to ICU and they need us to make some decisions. They're decisions I shouldn't make, but Mom and Me-Ma have had enough, I think. I can do this myself. I should get back to the hospital. It's midnight. I call Joe and decide to get back there before I call Mom.
Saturday, April 03, 2004
Day 6 - Saturday
Got up at 6:30am. Packed up, cleaned up, and moved out of the Lodge by 8am. Got to Gary by 8am. He seemed to be holding up quite well. He had a good breakfast and was ready to get up and walk downstairs. So I helped him put on his tenny shoes (Converse High Tops that required all the strings to be straight and flat), and we went downstairs. He was animated, even excited, about getting home. He wanted a fan in his room. It was hot in during the day because of all the glass. Downstairs, he had a couple of cigarettes and we talked about Joe and his land and Bill and all kinds of things. I told him my plan was to go get laundry done and to bring him some more skivvies -- then on Sunday, I'd bring street clothes and we'd get out of there Monday morning early. He said it was a plan.
We went back upstairs. He was moving slowly, but well. I was encouraged. I didn't tell him I had moved out of the Lodge and had all of our stuff in the rental car. Too much information. I left a little after 10am to find a hotel and do some shopping. Checked into a Days Inn or something and went to Target. Got him a fan and new skivvies. Stopped by McDonald's drive through and ate on Terwilliger on the way to the hospital. Didn't want to take McDonald's to his room to eat.
When I got there, he seemed really confused. He asked me about the fan though, and was thrilled when I pulled it out of a Target bag. The nurse said we needed to have permission to use it, but I plugged it in anyway. He thought it made a lot of noise, but what did you want for $10 anyway? He wanted to walk downstairs with me again -- we planned on three times per day over the weekend. He needed a shower though, he thought. He wanted me to wait. I could hear him banging around in there, and asked if he needed help -- of course, he refused. The nurse got him new pajamas and he got his razor and cleaned up his beard. I helped him lace on the Converse tennies again, just right, and we started to go downstairs. I could tell he wasn't good on his feet. Still, he talked just fine, even though he seemed so much more out of breath that he was just that morning. He smoked a couple of more cigarettes, and then he was ready to go back upstairs. When he stood up, he said he was really lightheaded. I saw a wheelchair that was unused near the bus stop. I asked if he wanted me to wheel him up. "That'd be a great idea," he said, and got into the chair.
I took him back to his room and told the nursing staff that he might need help. He was having trouble breathing. They took his O2 level and found it really low. A bit of oxygen, and he was doing OK by their standards. But he wasn't the same. He wasn't making much sense. I stayed with him until around 8PM after they brought him dinner. He wasn't interested in the food. He just wanted to sleep and for me to go away. I left a note for them to leave his dinner for him. If we were going to travel back, he would need all of his strength. I had to go do laundry. I wanted everything to come back clean.
Another stop at Taco Bell, and a bit of time getting a little lost to get back to the motel, and I was in laundry mode. I sanitized each of the four machines. Then I separated everything and began the laundry ordeal. I was talking to Mom and Joe and watching TV periodically. I finally got to bed at 4AM.
We went back upstairs. He was moving slowly, but well. I was encouraged. I didn't tell him I had moved out of the Lodge and had all of our stuff in the rental car. Too much information. I left a little after 10am to find a hotel and do some shopping. Checked into a Days Inn or something and went to Target. Got him a fan and new skivvies. Stopped by McDonald's drive through and ate on Terwilliger on the way to the hospital. Didn't want to take McDonald's to his room to eat.
When I got there, he seemed really confused. He asked me about the fan though, and was thrilled when I pulled it out of a Target bag. The nurse said we needed to have permission to use it, but I plugged it in anyway. He thought it made a lot of noise, but what did you want for $10 anyway? He wanted to walk downstairs with me again -- we planned on three times per day over the weekend. He needed a shower though, he thought. He wanted me to wait. I could hear him banging around in there, and asked if he needed help -- of course, he refused. The nurse got him new pajamas and he got his razor and cleaned up his beard. I helped him lace on the Converse tennies again, just right, and we started to go downstairs. I could tell he wasn't good on his feet. Still, he talked just fine, even though he seemed so much more out of breath that he was just that morning. He smoked a couple of more cigarettes, and then he was ready to go back upstairs. When he stood up, he said he was really lightheaded. I saw a wheelchair that was unused near the bus stop. I asked if he wanted me to wheel him up. "That'd be a great idea," he said, and got into the chair.
I took him back to his room and told the nursing staff that he might need help. He was having trouble breathing. They took his O2 level and found it really low. A bit of oxygen, and he was doing OK by their standards. But he wasn't the same. He wasn't making much sense. I stayed with him until around 8PM after they brought him dinner. He wasn't interested in the food. He just wanted to sleep and for me to go away. I left a note for them to leave his dinner for him. If we were going to travel back, he would need all of his strength. I had to go do laundry. I wanted everything to come back clean.
Another stop at Taco Bell, and a bit of time getting a little lost to get back to the motel, and I was in laundry mode. I sanitized each of the four machines. Then I separated everything and began the laundry ordeal. I was talking to Mom and Joe and watching TV periodically. I finally got to bed at 4AM.
Friday, April 02, 2004
Day 5 - Friday
Came in at the usual time, around 8:45; Gary was hungry -- they sent him a liquid diet for breakfast. Sharin was his nurse today. Dr. Vasquez from cardio came in around 8:50. She wanted the stress test done. Dr. Nicole Wheeler showed up a bit later and said his AFP was incredibly high. That's the level in the blood that is an indicator for cancer. They can't believe it's just from the liver, so they plan to do bone scan this afternoon (to see if there's bone cancer), and possibly do the stress test. At 9:10, someone showed up and did an EKG (finally). So I went downstairs to get a cookie and coffee, and made some phone calls.
By the time I was back upstairs, about 10:15, Gary said Nicole had returned and told him something. He couldn't remember -- but she had left a note in his drawer. I opened his drawer and found a paper towel. It said "Note: Like I said this a.m. don't believe it until it happens :) Angiography had a cancellation and says they will do the angio today. So the other scans (heart and bone) will be done later. Wanted to keep you updated. Thx. Nicole 10:00."
At 12:15, they came and took his vitals. Blood pressure was 102/53.
I stayed with Gary until his "lunch" came -- another clear liquid set of goodies. I helped him set up the boullion and tea. Then I went downstairs and had Burger King from the Canteen. Yum.
At 2PM, they came to get him for the angio. It was supposed to take at least an hour or two even. I followed him to radiology and waited. At some point, Anne paged me (I had left a message that I wanted to talk when she had time) and I went up to the 8th floor to meet with her. I was worried about the THC stuff. She said they were more worried about the cancer. His AFP numbers had skyrocketed. Of course, if everything was OK, they still wouldn't put him on the list for 60 days because of the THC, and then he'd have to take all the testing again. In Oregon. Great. We all knew he couldn't last that long.
Guess it was about 3:00 when they brought him back to his room. Pamela would be his nurse tonight. She was really efficient and worried about him moving around too much. Because of the angio, he could get a stroke or seizure by "throwing a clot." He was cranky about getting settled. Finally he did, though.
At 4:30, the Liver Team showed up. They drew all the curtains around us and explained that Gary was not a candidate for a transplant because the liver cancer had completely engulfed one lobe of the liver. They were there for a very short time. Gary asked them how long he had. They refused to answer.
I stopped Dr. Hamm in the hallway and asked him what the plan was. I was concerned that we were scheduled to be on a plane tomorrow, but I didn't think Gary had the strength to do it. He seemed sort of flippant about it -- we could leave tomorrow if we wanted. But I knew Gary couldn't handle it. Finally, we decided it would be best if he stayed over the weekend, ate normal meals, got a bit of exercise and got on the plane on Monday.
I stayed and at 7PM they sent him some real food. Baked salmon and other goodies. He enjoyed it. He even gave me a bite. He wasn't that upset. He said we'd go home and he'd eat good food and excersise. Fruit and vegetables. Nothing too much to worry about. He'd see how long he could last. Anyway, maybe they could do some kind of dialisis that would clean his blood the way the liver does. Ann stopped back by to check on us, and he asked her about that. She said the technology just wasn't there yet.
I left around 10PM. He walked me to the door of his room. I cried and so did he. I told him we just had to stay positive and get home.
I went back to the Liver Lodge, by way of the Taco Bell. I was so upset. I called all around. Talked to everyone. Didn't know what to do. Started planning for departure. Step one was to get out of the Lodge -- I almost left that night, but Joe talked me into staying. I started packing up stuff, because I knew I'd leave that morning for good. At 3AM, I finally hit the sack.
By the time I was back upstairs, about 10:15, Gary said Nicole had returned and told him something. He couldn't remember -- but she had left a note in his drawer. I opened his drawer and found a paper towel. It said "Note: Like I said this a.m. don't believe it until it happens :) Angiography had a cancellation and says they will do the angio today. So the other scans (heart and bone) will be done later. Wanted to keep you updated. Thx. Nicole 10:00."
At 12:15, they came and took his vitals. Blood pressure was 102/53.
I stayed with Gary until his "lunch" came -- another clear liquid set of goodies. I helped him set up the boullion and tea. Then I went downstairs and had Burger King from the Canteen. Yum.
At 2PM, they came to get him for the angio. It was supposed to take at least an hour or two even. I followed him to radiology and waited. At some point, Anne paged me (I had left a message that I wanted to talk when she had time) and I went up to the 8th floor to meet with her. I was worried about the THC stuff. She said they were more worried about the cancer. His AFP numbers had skyrocketed. Of course, if everything was OK, they still wouldn't put him on the list for 60 days because of the THC, and then he'd have to take all the testing again. In Oregon. Great. We all knew he couldn't last that long.
Guess it was about 3:00 when they brought him back to his room. Pamela would be his nurse tonight. She was really efficient and worried about him moving around too much. Because of the angio, he could get a stroke or seizure by "throwing a clot." He was cranky about getting settled. Finally he did, though.
At 4:30, the Liver Team showed up. They drew all the curtains around us and explained that Gary was not a candidate for a transplant because the liver cancer had completely engulfed one lobe of the liver. They were there for a very short time. Gary asked them how long he had. They refused to answer.
I stopped Dr. Hamm in the hallway and asked him what the plan was. I was concerned that we were scheduled to be on a plane tomorrow, but I didn't think Gary had the strength to do it. He seemed sort of flippant about it -- we could leave tomorrow if we wanted. But I knew Gary couldn't handle it. Finally, we decided it would be best if he stayed over the weekend, ate normal meals, got a bit of exercise and got on the plane on Monday.
I stayed and at 7PM they sent him some real food. Baked salmon and other goodies. He enjoyed it. He even gave me a bite. He wasn't that upset. He said we'd go home and he'd eat good food and excersise. Fruit and vegetables. Nothing too much to worry about. He'd see how long he could last. Anyway, maybe they could do some kind of dialisis that would clean his blood the way the liver does. Ann stopped back by to check on us, and he asked her about that. She said the technology just wasn't there yet.
I left around 10PM. He walked me to the door of his room. I cried and so did he. I told him we just had to stay positive and get home.
I went back to the Liver Lodge, by way of the Taco Bell. I was so upset. I called all around. Talked to everyone. Didn't know what to do. Started planning for departure. Step one was to get out of the Lodge -- I almost left that night, but Joe talked me into staying. I started packing up stuff, because I knew I'd leave that morning for good. At 3AM, I finally hit the sack.
Thursday, April 01, 2004
Day 4 - Thursday
April 1, 2004
Figured out how to take the trash out (this sounds like it would be easy, but there are protocols to be followed) and cleaned up the room. Got to the hospital by 8:15. Didn't even get lost. It does take 45 minutes to get from one place to the other in morning rush hour traffic, but it's kind of a nice drive, especially if you don't have to ride the stupid VA shuttle.
Gary said he was having trouble breathing. I think it's because of the fluids that have accumulated. He's more round now than ever. Probably doesn't have room to breathe. The cardiologist stopped by and said everything with his heart was all good. She didn't understand why they had not yet taken a simple EKG, but she would get on them and make sure it was ordered. She's a really kind person and makes Gary feel better. She's not afraid to touch him or just to really talk to him. She asked him what happened -- why he wasn't feeling so positive today. He just told her he felt bad. She said that although it wasn't her specialty, she knew they wouldn't be doing the anthroscopy today because his blood clotting levels were not good enough. He was at a 1.5 when he needs to be at least at 1.85 before they'll feel that it's safe. She still is planning on doing the stress test, and she was going to put in orders for that when they could get around to it.
Then the physical therapist stopped by. Gary had good oxygen levels even after he took a short walk with her. He thought she was funny because she was obviously playing for the other team. She seemed genuinely nice and decided that he should have a walker to help steady him. The weight he had gained because of the water retention made him less than stable on his feet. He's carrying around at least 50 extra pounds in fluid. She said she'd order it and come by later in the day to show him how to use it.
At around 10AM they came in and gave him his meds. He got 80MG Lasix, his spironolactone (finally one of the docs ordered it), a multivitamin, his Lithium, some Zinc and some Leprezal (that's a new one to me).
Then Dr. Wheeler brought by another resident to introduce to Gary. His name was Dr. Angelisti. Gary liked him. I don't think Gary really understood that most of these people were just student, and they came by to stare at him and undertstand his "pathology." Even if he would have known, he probably wouldn't have cared though. He said he liked Angelisti because he didn't say much and had good hands. He's been really focused on hands. Anyway, they said they were going to do the angio tomorrow, and he'd get fresh frozen plasma tonight to bump up that clotting factor. But they didn't plan on doing the Chemo tomorrow, they didn't think that his liver could handle it. The angio was to check visually on the progress of the cancer, and see if he was still operable -- and could still be put on the Liver List (that was our goal here, remember?)
This morning his nurse was a guy named William. He was very efficient and professional. Gary liked that and told him what a good job he was doing. BP 117/65. Gary took a shower. I went downstairs and ate BurgerKing in the canteen (ug). Bought Gary some cough drops and some post cards. We wrote them out and sent them off to Mom, Me-Ma, PNut and Joe. He seemed thirsty all the time and his throat hurt him.
He got a good lunch today at the right time. I sat and talked with him for a couple of hours. We talked about everyone and we remembered good times fishing and stuff. Gary told me that he didn't even want Bill to know when he died. Tough shit for brothers. He started by saying that he guessed I could have the Frenchie. I told him not to talk like that. I told him we had to be more positive, that things would work out.
There was an idiot in the next bed that kept chiming in on our conversations. Finally, Gary got tired and said he was going to nap. I said I'd just stay and read the paper. No sooner than he got snoozing that Physical Therapist woman-thing came by with a walker and wanted to teach him how to use it. Do you really need to teach someone how to use a walker? Um, just sorta lean into it and use it to support you.... Anyway, she woke him up and he was friendly and nice and let her get him up, and walk him down the hall and back. Whatever. He went back to sleep. I read more newspaper.
By 4PM, the Liver team, including Anne and Dr. Hamm (head dude), came by. Gary was groggy and cranky. They said his billyruben was up and they needed to go study his CT scan. So they left as quick as they came. Gary got up, was cranky and went to the bathroom. While he was there, the real "Gordon Wells" came in. Apparently, he had stopped by Gary's room yesterday around this time and told him about the THC levels. It had turned up on a drug scan. Well, duh. If you're that sick, you've got to do something. This was the guy that Gary told me earlier seemed more like a cop than someone who worked at a hospital. He was a jerk. He told me that we had kept other patients up at the Lodge and they had complained because the TV was on, etc. Someone really needs to give this guy a lesson in "social work," if that's what he's supposed to be doing. I wanted to strangle him. But it really didn't matter, because he was not going to be in the office tomorrow, so if I needed anything, I'd have to talk with someone else. What an ass. Meanwhile, Gary was in the bathroom yelling and crying.
Dr. Hamm came back about a half an hour later. I don't know if he would have stopped or not, but I saw him in the reflection of the mirror by the bathroom door and smiled at him. I was by the bathroom door trying to help Gary. He had been in there for quite a while and was trying to clean himself up. He had bad diarrhea. He'd messed his underwear. He wanted new pajama bottoms. I was trying to get the nurses to get pajama bottoms. I kept telling him just to slow down and be patient, but he's yelling at me in one ear while Dr. Hamm was sternly telling me in the other about his THC levels, and how they don't do transplants on people who are not "clean and sober" for at least 60 days. He was really arrogant, very pessimistic, and not too terribly professional.
He should have been able to see that I had my hands full and didn't need a lecture about being "clean and sober." You know, I hate that phrase and I also hate the word "compliance." Someone at the Lodge told me that it means you've got to do whatever they tell you, even if you don't understand it or if it doesn't make sense. And you've got to do it with a smile on your face. Otherwise, they'll simply not consider you for treatment. Anyway, Dr. Hamm said they were going to do the angio tomorrow to look at the cancer on his liver, and see if in 60 days he could be reconsidered for the list. They were going to give him the platelets to bump up the clotting factor tonight. I left and found an orderly who had the combination to the room where they keep the pajamas, and got Gary a clean pair.
I finally got him squared away and awake enough to tell him what everyone had said. Then I had to take a break and soak in everything. I was mad at him, mad at them, and just generally upset by the whole course of events. If there was a bad time for all of them to want to come by and dish out some crap, they had managed to appear. Just a few hours ago, Gary could have handled them fine. But he made a really bad impression on all of them. I could tell. Not that it really made any difference.
While I was downstairs, Dr. Wheeler had gone by Gary's room. In fact, I saw her leaving and she just smiled and acted like everything was great. Gary said she had been by, made him sign a paper about the possibility of contracting HIV from the platelets, then gave him the lecture about THC. I told him I'd speak to Anne about that tomorrow. They should not keep him from getting a liver if that's all they had. It is just plain stupid and immoral. Gary said he would not stay alive for 60 or 90 days with or without pot. He just felt he would not live that long. So I needed to convince her that it didn't matter. He wished I had been there to talk to Dr. Wheeler with him. There's only so much I can bear, though, so I don't think she told him anything I had not already heard or could do anything about. I planned to talk with Anne about this situation tomorrow when I could track her down.
I left at 5:15 and went to Walgreens to get my Welbutrin prescription. It was ready. Gary wanted to go back to sleep now and not have me sit there and watch him. At Walgreen's I also got Gary his Prep H. I stopped back by the hospital and left it in his night stand. He was sound asleep. I tried to tell him it was there, but I figured he'd find it when he needed it.
I stopped at a pull-out on Terwillinger and took this picture of Mt. Hood. Just as soon as I got back into the car, Mom called and wanted the number for the hospital. They had probably figured out that things were not going well here. At 6PM, I went to the Target and bought Gary some new underwear. He'd gone through all the ones he'd brought.
I decided to get some real food, and went to some Sportsbar to eat. It was really crowded, but I managed to eat a steak, salad and mashed potatoes. I decided to go next door to the Barnes & Noble and look for a book or two to read. While I was there, Mom called and said they'd talked to Gary, and that he was confused about his medicine and wanted me to call him. So I did and he told me they were not giving it to him right. He was just generally confused. I asked him if he wanted me to come back, but he said no, just make sure I brought all of his medicine with me tomorrow (I brought it with me every day). I told him I'd go over my list with the nurse in the morning.
By 9PM, I was back at the lodge and I watched the Apprentice. My favorite guy got kicked off. Then I washed the starch out of the new underwear in the bathroom sink, trying not to let anything touch anything. That place so gave me the creeps!
I called home and talked to Joe around 11:30. He'd been watching a show about Rwanda and was all upset about genocide. At midnight, I got off of the phone and went to bed. Listened to NPR until I fell asleep. I don't know what it is about boring liberal news radio, I generally don't agree with any of it, but it droning on just makes me feel more like I'm at home.
Figured out how to take the trash out (this sounds like it would be easy, but there are protocols to be followed) and cleaned up the room. Got to the hospital by 8:15. Didn't even get lost. It does take 45 minutes to get from one place to the other in morning rush hour traffic, but it's kind of a nice drive, especially if you don't have to ride the stupid VA shuttle.
Gary said he was having trouble breathing. I think it's because of the fluids that have accumulated. He's more round now than ever. Probably doesn't have room to breathe. The cardiologist stopped by and said everything with his heart was all good. She didn't understand why they had not yet taken a simple EKG, but she would get on them and make sure it was ordered. She's a really kind person and makes Gary feel better. She's not afraid to touch him or just to really talk to him. She asked him what happened -- why he wasn't feeling so positive today. He just told her he felt bad. She said that although it wasn't her specialty, she knew they wouldn't be doing the anthroscopy today because his blood clotting levels were not good enough. He was at a 1.5 when he needs to be at least at 1.85 before they'll feel that it's safe. She still is planning on doing the stress test, and she was going to put in orders for that when they could get around to it.
Then the physical therapist stopped by. Gary had good oxygen levels even after he took a short walk with her. He thought she was funny because she was obviously playing for the other team. She seemed genuinely nice and decided that he should have a walker to help steady him. The weight he had gained because of the water retention made him less than stable on his feet. He's carrying around at least 50 extra pounds in fluid. She said she'd order it and come by later in the day to show him how to use it.
At around 10AM they came in and gave him his meds. He got 80MG Lasix, his spironolactone (finally one of the docs ordered it), a multivitamin, his Lithium, some Zinc and some Leprezal (that's a new one to me).
Then Dr. Wheeler brought by another resident to introduce to Gary. His name was Dr. Angelisti. Gary liked him. I don't think Gary really understood that most of these people were just student, and they came by to stare at him and undertstand his "pathology." Even if he would have known, he probably wouldn't have cared though. He said he liked Angelisti because he didn't say much and had good hands. He's been really focused on hands. Anyway, they said they were going to do the angio tomorrow, and he'd get fresh frozen plasma tonight to bump up that clotting factor. But they didn't plan on doing the Chemo tomorrow, they didn't think that his liver could handle it. The angio was to check visually on the progress of the cancer, and see if he was still operable -- and could still be put on the Liver List (that was our goal here, remember?)
This morning his nurse was a guy named William. He was very efficient and professional. Gary liked that and told him what a good job he was doing. BP 117/65. Gary took a shower. I went downstairs and ate BurgerKing in the canteen (ug). Bought Gary some cough drops and some post cards. We wrote them out and sent them off to Mom, Me-Ma, PNut and Joe. He seemed thirsty all the time and his throat hurt him.
He got a good lunch today at the right time. I sat and talked with him for a couple of hours. We talked about everyone and we remembered good times fishing and stuff. Gary told me that he didn't even want Bill to know when he died. Tough shit for brothers. He started by saying that he guessed I could have the Frenchie. I told him not to talk like that. I told him we had to be more positive, that things would work out.
There was an idiot in the next bed that kept chiming in on our conversations. Finally, Gary got tired and said he was going to nap. I said I'd just stay and read the paper. No sooner than he got snoozing that Physical Therapist woman-thing came by with a walker and wanted to teach him how to use it. Do you really need to teach someone how to use a walker? Um, just sorta lean into it and use it to support you.... Anyway, she woke him up and he was friendly and nice and let her get him up, and walk him down the hall and back. Whatever. He went back to sleep. I read more newspaper.
By 4PM, the Liver team, including Anne and Dr. Hamm (head dude), came by. Gary was groggy and cranky. They said his billyruben was up and they needed to go study his CT scan. So they left as quick as they came. Gary got up, was cranky and went to the bathroom. While he was there, the real "Gordon Wells" came in. Apparently, he had stopped by Gary's room yesterday around this time and told him about the THC levels. It had turned up on a drug scan. Well, duh. If you're that sick, you've got to do something. This was the guy that Gary told me earlier seemed more like a cop than someone who worked at a hospital. He was a jerk. He told me that we had kept other patients up at the Lodge and they had complained because the TV was on, etc. Someone really needs to give this guy a lesson in "social work," if that's what he's supposed to be doing. I wanted to strangle him. But it really didn't matter, because he was not going to be in the office tomorrow, so if I needed anything, I'd have to talk with someone else. What an ass. Meanwhile, Gary was in the bathroom yelling and crying.
Dr. Hamm came back about a half an hour later. I don't know if he would have stopped or not, but I saw him in the reflection of the mirror by the bathroom door and smiled at him. I was by the bathroom door trying to help Gary. He had been in there for quite a while and was trying to clean himself up. He had bad diarrhea. He'd messed his underwear. He wanted new pajama bottoms. I was trying to get the nurses to get pajama bottoms. I kept telling him just to slow down and be patient, but he's yelling at me in one ear while Dr. Hamm was sternly telling me in the other about his THC levels, and how they don't do transplants on people who are not "clean and sober" for at least 60 days. He was really arrogant, very pessimistic, and not too terribly professional.
He should have been able to see that I had my hands full and didn't need a lecture about being "clean and sober." You know, I hate that phrase and I also hate the word "compliance." Someone at the Lodge told me that it means you've got to do whatever they tell you, even if you don't understand it or if it doesn't make sense. And you've got to do it with a smile on your face. Otherwise, they'll simply not consider you for treatment. Anyway, Dr. Hamm said they were going to do the angio tomorrow to look at the cancer on his liver, and see if in 60 days he could be reconsidered for the list. They were going to give him the platelets to bump up the clotting factor tonight. I left and found an orderly who had the combination to the room where they keep the pajamas, and got Gary a clean pair.
I finally got him squared away and awake enough to tell him what everyone had said. Then I had to take a break and soak in everything. I was mad at him, mad at them, and just generally upset by the whole course of events. If there was a bad time for all of them to want to come by and dish out some crap, they had managed to appear. Just a few hours ago, Gary could have handled them fine. But he made a really bad impression on all of them. I could tell. Not that it really made any difference.
While I was downstairs, Dr. Wheeler had gone by Gary's room. In fact, I saw her leaving and she just smiled and acted like everything was great. Gary said she had been by, made him sign a paper about the possibility of contracting HIV from the platelets, then gave him the lecture about THC. I told him I'd speak to Anne about that tomorrow. They should not keep him from getting a liver if that's all they had. It is just plain stupid and immoral. Gary said he would not stay alive for 60 or 90 days with or without pot. He just felt he would not live that long. So I needed to convince her that it didn't matter. He wished I had been there to talk to Dr. Wheeler with him. There's only so much I can bear, though, so I don't think she told him anything I had not already heard or could do anything about. I planned to talk with Anne about this situation tomorrow when I could track her down.
I left at 5:15 and went to Walgreens to get my Welbutrin prescription. It was ready. Gary wanted to go back to sleep now and not have me sit there and watch him. At Walgreen's I also got Gary his Prep H. I stopped back by the hospital and left it in his night stand. He was sound asleep. I tried to tell him it was there, but I figured he'd find it when he needed it.
I stopped at a pull-out on Terwillinger and took this picture of Mt. Hood. Just as soon as I got back into the car, Mom called and wanted the number for the hospital. They had probably figured out that things were not going well here. At 6PM, I went to the Target and bought Gary some new underwear. He'd gone through all the ones he'd brought.
I decided to get some real food, and went to some Sportsbar to eat. It was really crowded, but I managed to eat a steak, salad and mashed potatoes. I decided to go next door to the Barnes & Noble and look for a book or two to read. While I was there, Mom called and said they'd talked to Gary, and that he was confused about his medicine and wanted me to call him. So I did and he told me they were not giving it to him right. He was just generally confused. I asked him if he wanted me to come back, but he said no, just make sure I brought all of his medicine with me tomorrow (I brought it with me every day). I told him I'd go over my list with the nurse in the morning.
By 9PM, I was back at the lodge and I watched the Apprentice. My favorite guy got kicked off. Then I washed the starch out of the new underwear in the bathroom sink, trying not to let anything touch anything. That place so gave me the creeps!
I called home and talked to Joe around 11:30. He'd been watching a show about Rwanda and was all upset about genocide. At midnight, I got off of the phone and went to bed. Listened to NPR until I fell asleep. I don't know what it is about boring liberal news radio, I generally don't agree with any of it, but it droning on just makes me feel more like I'm at home.
Wednesday, March 31, 2004
Day 3 - Wednesday
March 31, 2004
It's 7:30 AM, and I wake up at the Travellodge confused, but comfortable. I get dressed, make coffee in the tiny coffee pot, and open the windows onto the downtown street. At 8AM, I called Enterprise Rent-A-Car to come pick me up and take me to their offices to rent a car (a promise they had made during a phone call the night before). At 9AM, they called back and said they couldn't do it -- they didn't have a car -- spring break, wrong location, any excuse -- WHATEVER.
So I got out a phone book and called Dollar Rent-A-Car. OK, so they get some kind of award. By 9:15, they had picked me up, and by 9:30, the car was rented and I was given perfect instructions on how to drive back to the hospital. Along the way, the driver told me that the cherry trees were blossoming this week, and they only blossomed for about a week. The streets were lined with them.
I had not noticed until he mentioned it. And once I noticed, the town seemed overwhelmingly full of them. The picture above is a tree that stood outside the Liver Lodge.
By 10, I was in Gary's room. He had already seen several doctors, and was very positive. I guess he thought about things. That's the only way he could be. He was polite with everyone, but there were more tests to take today -- a lot more -- and they denied him breakfast. At 11AM, I went downstairs and brought up a bagel and cream cheese, which I ate on the sly so he wouldn't have to watch -- but he still saw it and told me to eat somewhere else next time. I don't know if he ever got to those chicken breasts, but they were gone from the drawer of his nightstand.
They took him back to radiology for something. I went down there and waited until they took him back to his room. He knew I had rented a car and he was happy about it -- and he didn't want me waiting around in his room for them to take him to more tests. I told him if they'd let him out for a bit we could go for a drive and maybe see the coastline this far up north. He said it was nothing to look at. I went downstairs at 1PM and ate a hotdog. Really bad idea. I checked in on him, and he told to put miles on that car if I was being charged by the day, I wandered around the hospital and took some pictures. I read the newspaper. I didn't want to leave.
Later in the afternoon, one of the Cardiologists and a team of residents came by to listen to his heart. It was Dr. McMurty - not his usual cardiologist. I think they wanted to all hear his heart as a learning experience. He was in good spirits about it, and let them all put stethescopes on him and hear him tick. Dr. McMurty though looked like she had just been up for way to long. She would talk about how well his heart was working to her "class" and then they'd listen -- she told him to take deep breaths, then normal breaths, and all 5 or 6 of them had their stethscopes to his back. At one point, she said "can you stop breathing now?" He said "that's what I'm in the hospital to avoid." All the students laughed. She just had this blank stare on her face for a moment ant then said, "you know what I mean." It was funny. Guess you had to be there.
At 3PM, they came back to his room to take another sonogram. Said they'd lost the one from yesterday. I waited in his room.
There was a rainbow that you could see from one end to the other from his window.
Finally, he got to come back and eat. His nurse was basically useless. She ate lunch for an hour after he asked for a pain pill. He had also asked repeatedly for his Spirolactine - that he understood worked with his other medicine, but no one would order it for some reason. I got in the nurse's face when I found her in that breakroom eating. She kept saying he was asking for a shot. She was nuts. But everyone was saying that Gary said things he didn't (like he wanted a shot). I was there -- they said he said crazy things because he wouldn't take his Lactulose. I saw him drink that stuff. Finally, they brought him a pain pill and some food. Blood pressure 110/67. He wanted to sleep and for me not to watch him. He also wanted some Prep-H. I studied the maps I brought and found a near-by Walgreen's, where I went and got 2 out of 3 of my prescriptions filled.
I also had no Internet connection. This sounds minor, but keeping track of everything in one place is so important to me that I'm entering all this stuff now and re-living it. Don't know if it's healthy for me or not, but I feel like I need to do it. If I would have been able to be on the net, I would have somehow felt better and less alone.
Somewhere, I heard you could hook your cell phone to your notebook for a connection. Since there was no phone line at the Lodge, this sounded like a way to get back online. I mean, that's why I bought this groovy notebook anyway. I found a Radio Shack and bought a cable from them. But they said I needed the software. So I had to drive to another Radio Shack to get that. I also got a small Grundig shortwave radio on sale that both Joe and Gary would love. I needed to listen to NPR to sleep right. By 7:30, I was back at the Liver Lodge with Taco Bell and all of what I thought were the necessary components to get online. I managed to avoid everyone there and get in through the back door. I figured that if they disliked me for my aloofness and my cell phone, they'd really hate it that I had rented a car.
I had no luck with the connection. Somehow, the software wasn't working and you know what? I didn't really care. Spent time on the phone with everyone after chowing my tacos, and then I crashed alone in that wonderful Lodge bunk.
I wanted to just pack up and leave that night. Move out of there -- what was I doing there anyway? I needed to get a hotel, or something -- but it got late, so I stayed and decided I'd figure things out in the morning.
It's 7:30 AM, and I wake up at the Travellodge confused, but comfortable. I get dressed, make coffee in the tiny coffee pot, and open the windows onto the downtown street. At 8AM, I called Enterprise Rent-A-Car to come pick me up and take me to their offices to rent a car (a promise they had made during a phone call the night before). At 9AM, they called back and said they couldn't do it -- they didn't have a car -- spring break, wrong location, any excuse -- WHATEVER.
So I got out a phone book and called Dollar Rent-A-Car. OK, so they get some kind of award. By 9:15, they had picked me up, and by 9:30, the car was rented and I was given perfect instructions on how to drive back to the hospital. Along the way, the driver told me that the cherry trees were blossoming this week, and they only blossomed for about a week. The streets were lined with them.
I had not noticed until he mentioned it. And once I noticed, the town seemed overwhelmingly full of them. The picture above is a tree that stood outside the Liver Lodge.
By 10, I was in Gary's room. He had already seen several doctors, and was very positive. I guess he thought about things. That's the only way he could be. He was polite with everyone, but there were more tests to take today -- a lot more -- and they denied him breakfast. At 11AM, I went downstairs and brought up a bagel and cream cheese, which I ate on the sly so he wouldn't have to watch -- but he still saw it and told me to eat somewhere else next time. I don't know if he ever got to those chicken breasts, but they were gone from the drawer of his nightstand.
They took him back to radiology for something. I went down there and waited until they took him back to his room. He knew I had rented a car and he was happy about it -- and he didn't want me waiting around in his room for them to take him to more tests. I told him if they'd let him out for a bit we could go for a drive and maybe see the coastline this far up north. He said it was nothing to look at. I went downstairs at 1PM and ate a hotdog. Really bad idea. I checked in on him, and he told to put miles on that car if I was being charged by the day, I wandered around the hospital and took some pictures. I read the newspaper. I didn't want to leave.
Later in the afternoon, one of the Cardiologists and a team of residents came by to listen to his heart. It was Dr. McMurty - not his usual cardiologist. I think they wanted to all hear his heart as a learning experience. He was in good spirits about it, and let them all put stethescopes on him and hear him tick. Dr. McMurty though looked like she had just been up for way to long. She would talk about how well his heart was working to her "class" and then they'd listen -- she told him to take deep breaths, then normal breaths, and all 5 or 6 of them had their stethscopes to his back. At one point, she said "can you stop breathing now?" He said "that's what I'm in the hospital to avoid." All the students laughed. She just had this blank stare on her face for a moment ant then said, "you know what I mean." It was funny. Guess you had to be there.
At 3PM, they came back to his room to take another sonogram. Said they'd lost the one from yesterday. I waited in his room.
There was a rainbow that you could see from one end to the other from his window.
Finally, he got to come back and eat. His nurse was basically useless. She ate lunch for an hour after he asked for a pain pill. He had also asked repeatedly for his Spirolactine - that he understood worked with his other medicine, but no one would order it for some reason. I got in the nurse's face when I found her in that breakroom eating. She kept saying he was asking for a shot. She was nuts. But everyone was saying that Gary said things he didn't (like he wanted a shot). I was there -- they said he said crazy things because he wouldn't take his Lactulose. I saw him drink that stuff. Finally, they brought him a pain pill and some food. Blood pressure 110/67. He wanted to sleep and for me not to watch him. He also wanted some Prep-H. I studied the maps I brought and found a near-by Walgreen's, where I went and got 2 out of 3 of my prescriptions filled.
I also had no Internet connection. This sounds minor, but keeping track of everything in one place is so important to me that I'm entering all this stuff now and re-living it. Don't know if it's healthy for me or not, but I feel like I need to do it. If I would have been able to be on the net, I would have somehow felt better and less alone.
Somewhere, I heard you could hook your cell phone to your notebook for a connection. Since there was no phone line at the Lodge, this sounded like a way to get back online. I mean, that's why I bought this groovy notebook anyway. I found a Radio Shack and bought a cable from them. But they said I needed the software. So I had to drive to another Radio Shack to get that. I also got a small Grundig shortwave radio on sale that both Joe and Gary would love. I needed to listen to NPR to sleep right. By 7:30, I was back at the Liver Lodge with Taco Bell and all of what I thought were the necessary components to get online. I managed to avoid everyone there and get in through the back door. I figured that if they disliked me for my aloofness and my cell phone, they'd really hate it that I had rented a car.
I had no luck with the connection. Somehow, the software wasn't working and you know what? I didn't really care. Spent time on the phone with everyone after chowing my tacos, and then I crashed alone in that wonderful Lodge bunk.
I wanted to just pack up and leave that night. Move out of there -- what was I doing there anyway? I needed to get a hotel, or something -- but it got late, so I stayed and decided I'd figure things out in the morning.
Tuesday, March 30, 2004
Day 2 - Tuesday
March 30, 2004
Gary can't sleep. He's so paranoid we won't make it to the 7:20 bus that he wants to be up early. Last night, I convinced him to take his Lactulose solution, and when he wasn't worried about getting to the bus, he was in the bathroom. Kept the whole Lodge awake.
We called home around 6:15AM and talked to mom. Told her to talk to Dr. Kahn. By 7AM we were on the Vancouver bus. Too early. We had to wait for 20 minutes to roll. I got back out and bought a newspaper. Gary was looking for Spurs basketball scores. I was preoccupied with the classifieds and how the state lottery chairman was cheating the state really bad. Finally, the bus takes off. Unfortunately, I don't pull out my video camera and take shots from the bus. I think about it, but then I think that maybe it would embarrass him.
At 8AM, we're on the 4th floor of the hospital, checking in at "short stay care" for the "procedure" that neither of us are certain of. They take Gary in the back and want me to wait in the tiny waiting room, but I ask if I can just come back since other family members (wives, sisters, etc.) seem to be going back with their guys when they call. They let me go back with him, although they're worried they don't have enough room. There's plenty of room when I get back there. They make Gary change clothes, although we haven't agreed to anything. The nurses promise that Dr. Ives (who will actually be performing the "procedure" and the head of liver surgery, Dr. Orloff, will be by to talk with us first).
At 10AM, Dr. Ives shows up. I have a list of questions to ask him. So does Gary. It's clear that he doesn't know all that goes in to a liver transplant. But at the same time, Dr. Ives seems good, and he answers our questions well. We're relatively satisfied. They will do an anthroscopy, and then decide if they can do the chemo. Gary will be awake through all of it. He keeps saying that he'll be able to tell if the guy is "all thumbs" and not capable of the chemo. The chemo is kind of scary; it all depends on the main artery running through the liver. If the cancer is isolated, that is, if it's not near or utilizing the main artery for blood support, they can use the chemo to make it smaller. Gary agrees to sign the consent form to have the procedure done when they take him down to radiology on the 2nd floor.
Then a psychyatrist showed up. She resembled a bird. Some kind of crested water fowl. Anyway, she wanted to move Gary to another private room to talk, but he said talking where he was would be fine. He had no secrets. She asked him about delayed stress syndrome. I noticed at this point she had moved her chair far away from striking distance. He said he couldn't explain it to her. There was a long pause, then she insisted. He said it was as if the hospital blew up, and 3/4 of all the people she knew were dead. He asked her how she would feel. She just bobbed her head. He thought he did fine. I said nothing.
I sat with him for a while after Dr. Ives left, and when they started bringing in IV's and getting him on a gurney, I left and went down to radiology, expecting to meet him there.
I found the place and prepared to camp out. This thing could take a couple of hours. But after 20 minutes or so, he didn't show up. So I went to the desk to ask. The clerk was confused. She said he was scheduled, but he was still on the 4th floor. She didn't know why. So I packed back up and headed up to Short Stay Care. They gave me a particular nurse's name, who I looked up. She took me to Gary, who still thought he was waiting to get up to the 4th floor for the procedure. I told him it wasn't happening, from what I knew was going on. Neither of us could figure out why. Someone came in and told me I had to leave -- this area was only for patients and nurses. I asked where they were taking him. They said they were checking him in to 9D shortly. So that's where I headed.
At 9D, they didn't know he was coming. I waited. Didn't know if they would take him to the fourth floor for the procedure and then to 9D or if they were sending him straight to 9D. I went back to the fourth floor, and they said he wasn't scheduled. So I headed back to 9D and waited some more. At 12:30, he finally showed up in 9D. The rumor is that he refused to consent to the procedure. This is not true. We will discover this later.
Between 1PM and 4:45PM, I shadowed him through procedures all over the hospital. Sometimes, I wasn't sure where he was, they moved him around so fast. Sometime, during this fun, I ate a sandwich and a bag of chips, but Gary had nothing. They took 17 more vials of blood, did a CAT scan, an Echo and a sonogram.
At 4:45, they took him back to a really nice room in 9D, where they finally allowed him to eat. They had brought the food in at noon, but told him he couldn't have any, since he had all these tests to take. So after every test, he'd get to come in, look at it for ten minutes, and then go to another test. At 4:30, this whole thing irritated me, and I went to the canteen before it closed and bought two chicken breasts (skinless and baked) and some mashed potatoes and took them back to his room, placing them on top of the 4 hour old lunch they had left for him. When he arrived, he asked me to hide them in his nightstand. He didn't want to get in trouble for eating unauthorized food.
Emmett, the nurse, took the lunch to the microwave an heated it back up. Gary ate and swore it was wonderful. He told Emmett he really wanted to talk to a doctor. Gary and Emmett really hit it off. Both hunters and fishermen, formerly heavy equipment operators; Emmett had even lived in Texas (a bit north of San Antonio) for a while, so he knew what we were coming from. He paged a doctor, and finally at 6PM, a resident - Dr. Nicole Wheeler - showed up. She talked with us a while and did a perfunctory physical exam. She said things showed up in Gary's levels that made Dr. Ives not want to do the procedure. She said that test he took today would answer a lot of questions he had. She was nice, but almost too kind. Gary was discouraged. And cranky. I don't blame him. He had been through too much today to be positive. Which is the lecture I gave him. He had to remain positive. It is important to everything overall -- the doctors even treat you differently if you have hope. I kissed him and made it to the 6:15 VA bus, even though I thought I would stay longer and just take a cab back to the Lodge.
I made it to the bus though, and sat in the back with a guy that looked a lot like an old friend of mine - Jody Moore - but this guy was much more preoccupied with pop corn. He was like the RainMan of popcorn. All kinds of pop corn -- and things you could put on it. I thought about whipping out the camera, but with popcorn rainman next to me, it would have been too strange. Looking back on it though, it certainly wouldn't have been any stranger than he was.
In any case, I had to get out of that oppressive lodge. It sounds weird, I know, because it was only 2 nights there now, but I couldn't shower and the place and the people gave me the heebie jeebies. Like they were watching me all the time -- it was clear they thought I was arrogant -- with my own phone and all. Plus, we had kept them up all night last night.
They were probably relieved to see me arrive alone. I announced to the folks in the den who were watching TV that Gary had been admitted to the hospital, and I was going to go spend the night with a friend, then I called the Travellodge downtown, made a reservation, and called a cab. I just needed to get out of there. No one protested, that's for sure.
I had the cab stop off at SafeWay to look for food and Lysol (I wanted a CLEAN shower). By 1:45AM, I was in some weird travellodge in downtown, showered, fed, and talking to Joe. Man, I wished he could have come along for this. It's hard alone.
Gary can't sleep. He's so paranoid we won't make it to the 7:20 bus that he wants to be up early. Last night, I convinced him to take his Lactulose solution, and when he wasn't worried about getting to the bus, he was in the bathroom. Kept the whole Lodge awake.
We called home around 6:15AM and talked to mom. Told her to talk to Dr. Kahn. By 7AM we were on the Vancouver bus. Too early. We had to wait for 20 minutes to roll. I got back out and bought a newspaper. Gary was looking for Spurs basketball scores. I was preoccupied with the classifieds and how the state lottery chairman was cheating the state really bad. Finally, the bus takes off. Unfortunately, I don't pull out my video camera and take shots from the bus. I think about it, but then I think that maybe it would embarrass him.
At 8AM, we're on the 4th floor of the hospital, checking in at "short stay care" for the "procedure" that neither of us are certain of. They take Gary in the back and want me to wait in the tiny waiting room, but I ask if I can just come back since other family members (wives, sisters, etc.) seem to be going back with their guys when they call. They let me go back with him, although they're worried they don't have enough room. There's plenty of room when I get back there. They make Gary change clothes, although we haven't agreed to anything. The nurses promise that Dr. Ives (who will actually be performing the "procedure" and the head of liver surgery, Dr. Orloff, will be by to talk with us first).
At 10AM, Dr. Ives shows up. I have a list of questions to ask him. So does Gary. It's clear that he doesn't know all that goes in to a liver transplant. But at the same time, Dr. Ives seems good, and he answers our questions well. We're relatively satisfied. They will do an anthroscopy, and then decide if they can do the chemo. Gary will be awake through all of it. He keeps saying that he'll be able to tell if the guy is "all thumbs" and not capable of the chemo. The chemo is kind of scary; it all depends on the main artery running through the liver. If the cancer is isolated, that is, if it's not near or utilizing the main artery for blood support, they can use the chemo to make it smaller. Gary agrees to sign the consent form to have the procedure done when they take him down to radiology on the 2nd floor.
Then a psychyatrist showed up. She resembled a bird. Some kind of crested water fowl. Anyway, she wanted to move Gary to another private room to talk, but he said talking where he was would be fine. He had no secrets. She asked him about delayed stress syndrome. I noticed at this point she had moved her chair far away from striking distance. He said he couldn't explain it to her. There was a long pause, then she insisted. He said it was as if the hospital blew up, and 3/4 of all the people she knew were dead. He asked her how she would feel. She just bobbed her head. He thought he did fine. I said nothing.
I sat with him for a while after Dr. Ives left, and when they started bringing in IV's and getting him on a gurney, I left and went down to radiology, expecting to meet him there.
I found the place and prepared to camp out. This thing could take a couple of hours. But after 20 minutes or so, he didn't show up. So I went to the desk to ask. The clerk was confused. She said he was scheduled, but he was still on the 4th floor. She didn't know why. So I packed back up and headed up to Short Stay Care. They gave me a particular nurse's name, who I looked up. She took me to Gary, who still thought he was waiting to get up to the 4th floor for the procedure. I told him it wasn't happening, from what I knew was going on. Neither of us could figure out why. Someone came in and told me I had to leave -- this area was only for patients and nurses. I asked where they were taking him. They said they were checking him in to 9D shortly. So that's where I headed.
At 9D, they didn't know he was coming. I waited. Didn't know if they would take him to the fourth floor for the procedure and then to 9D or if they were sending him straight to 9D. I went back to the fourth floor, and they said he wasn't scheduled. So I headed back to 9D and waited some more. At 12:30, he finally showed up in 9D. The rumor is that he refused to consent to the procedure. This is not true. We will discover this later.
Between 1PM and 4:45PM, I shadowed him through procedures all over the hospital. Sometimes, I wasn't sure where he was, they moved him around so fast. Sometime, during this fun, I ate a sandwich and a bag of chips, but Gary had nothing. They took 17 more vials of blood, did a CAT scan, an Echo and a sonogram.
At 4:45, they took him back to a really nice room in 9D, where they finally allowed him to eat. They had brought the food in at noon, but told him he couldn't have any, since he had all these tests to take. So after every test, he'd get to come in, look at it for ten minutes, and then go to another test. At 4:30, this whole thing irritated me, and I went to the canteen before it closed and bought two chicken breasts (skinless and baked) and some mashed potatoes and took them back to his room, placing them on top of the 4 hour old lunch they had left for him. When he arrived, he asked me to hide them in his nightstand. He didn't want to get in trouble for eating unauthorized food.
Emmett, the nurse, took the lunch to the microwave an heated it back up. Gary ate and swore it was wonderful. He told Emmett he really wanted to talk to a doctor. Gary and Emmett really hit it off. Both hunters and fishermen, formerly heavy equipment operators; Emmett had even lived in Texas (a bit north of San Antonio) for a while, so he knew what we were coming from. He paged a doctor, and finally at 6PM, a resident - Dr. Nicole Wheeler - showed up. She talked with us a while and did a perfunctory physical exam. She said things showed up in Gary's levels that made Dr. Ives not want to do the procedure. She said that test he took today would answer a lot of questions he had. She was nice, but almost too kind. Gary was discouraged. And cranky. I don't blame him. He had been through too much today to be positive. Which is the lecture I gave him. He had to remain positive. It is important to everything overall -- the doctors even treat you differently if you have hope. I kissed him and made it to the 6:15 VA bus, even though I thought I would stay longer and just take a cab back to the Lodge.
I made it to the bus though, and sat in the back with a guy that looked a lot like an old friend of mine - Jody Moore - but this guy was much more preoccupied with pop corn. He was like the RainMan of popcorn. All kinds of pop corn -- and things you could put on it. I thought about whipping out the camera, but with popcorn rainman next to me, it would have been too strange. Looking back on it though, it certainly wouldn't have been any stranger than he was.
In any case, I had to get out of that oppressive lodge. It sounds weird, I know, because it was only 2 nights there now, but I couldn't shower and the place and the people gave me the heebie jeebies. Like they were watching me all the time -- it was clear they thought I was arrogant -- with my own phone and all. Plus, we had kept them up all night last night.
They were probably relieved to see me arrive alone. I announced to the folks in the den who were watching TV that Gary had been admitted to the hospital, and I was going to go spend the night with a friend, then I called the Travellodge downtown, made a reservation, and called a cab. I just needed to get out of there. No one protested, that's for sure.
I had the cab stop off at SafeWay to look for food and Lysol (I wanted a CLEAN shower). By 1:45AM, I was in some weird travellodge in downtown, showered, fed, and talking to Joe. Man, I wished he could have come along for this. It's hard alone.
Monday, March 29, 2004
Day 1 - Monday
March 29, 2004
We're supposed to be on the 7:20 shuttle. We can't make it. I wake up just in time to call the Texas Workforce Commission in San Antonio and make my claim for unemployment. I call Gordon to tell him we're running late. It was a bad flight. Gary doesn't want to get up until the afternoon -- like 1PM or so -- he's exhausted. Gordon says he's already missed appointments -- it's 10AM in Portland. I get Gary moving. The whole Lodge is torn up by his rummaging about, taking his shower, getting ready to go. He swears he lost a t-shirt somewhere in the ordeal. Everyone's trying to find it for him. I convince the driver of the 11AM shuttle to pick us up at the back door of the lodge, because he can't breath strong enough to make it to the bus stop in time. Finally, at 11AM, we board the shuttle for the hospital.
The ride to the hospital is an adventure. Clearly, the driver's done this before. He negotiates freeways and the winding road to the hospital in break-neck speed. In fact, he's scary good. Gary thanks him for the wild ride and tells him he's a professional. In fact, he's a volunteer. It seems that the grand ole USA can't even pay bus drivers to get patients from one location to the other, and I notice that there are signs on the bus asking for volunteers.
We go to the 8th floor and meet Ann (highly recommended nurse-facilitator) and her assistant (award-winning admin) and they are upset at us for being late. A guy with a pony tail, whom I assume is Gordon Wells, said they have been looking for us. They end up sending us to the lab for blood tests. They tell us to do the blood tests, get something to eat, and return. We also go over some document about his blood and tissue being used for testing. He says he'd like to do anything that will help people who have this disease in the future, so he signs without reading -- I glance through it and it looks harmless, and the assistant says she will have a copy ready for us in the afternoon. If we don't like what it says, we can just undo it.
Unfortunately, the blood test is quite involved (27 vials of blood or so), and there's one of our Lodge-mates in front of us who has to do the same test -- and she seems to bleed slowly. We wait for over an hour to get his tests started. Finally, we get to the canteen around 3:15 and eat something I can't identify but reminds me of food we had in Cline's Corners NM about 12 years ago. We return to 8D at 4PM, and they act like we've been messing around. Gary gets a lecture about taking his Lactulose Solution. This is supposed to clear the ammonia from his brain and help him think better. It gives him diareahhahaa. He hates it. I can't blame him. He didn't take it yesterday because we were going to be in flight for so long.
Ann tells us that Gary's scheduled for a Chemo Embolization tomorrow. We have no real idea what that is, and they give some vague social-worker explaination about what they will do to him. We're supposed to be there on the first bus, check in on the 4th floor, and they will do the proceedure and keep him overnight on the 9th floor. I get Ann to give me a copy of the document we signed this morning. She seems surprised that I remembered. And she told him that his tests showed he was not sick enough to be admitted to the hospital. He thought she had the wrong results or something, because the platelette count she quoted was higher than he ever has had. At any rate, they sent us back to the Lodge.
We went downstairs and exited the hospital doors at exactly 4:30. The bus back to the Lodge should have been there, but... no bus. We waited. The last bus, we were told, leaves at 6:30. So we waited some more. We started to get cold. We didn't want to miss the last bus, so we waited outside. The gentleman at the front information desk had none (information, that is). Finally, at 6:20, the bus showed up and we got on board. A rowdy ride back, but this time I took notes on how to get from the hospital to the Lodge.
We were worried about the Chemo Embo thing and we talked about it -- at great length. We made a list of questions to ask. We decided to get mom to talk to Dr. Kahn back in Temple. Why couldn't they do the proceedure there? Why didn't they? They were going to do some kind of surgery at one point, but backed out because it was too dangerous. Was this the same thing? We didn't know.
We ate more of the chicken and potato salad from last night. Gary wanted Fritos with his food. I wanted a Diet Coke. I asked Roberto where there were snack machines. He gave me long and convoluted directions, and then offered me a Diet Coke. He gave me one of the Lemon ones that I hate. I didn't want to hurt his feelings, so I took it. Momentarily, I went down the long weird hallways to find the machines. I got Gary his Fritos and me my real DC. When I got back, Gary said he didn't eat Fritos, and that he asked for potato chips. I went out again and took the long walk to get him chips. I know he said Fritos.
I didn't feel like eating, but Gary insisted, so I ate some chicken and potato salad. Lights out at around 11 again, but Gary couldn't sleep.
We're supposed to be on the 7:20 shuttle. We can't make it. I wake up just in time to call the Texas Workforce Commission in San Antonio and make my claim for unemployment. I call Gordon to tell him we're running late. It was a bad flight. Gary doesn't want to get up until the afternoon -- like 1PM or so -- he's exhausted. Gordon says he's already missed appointments -- it's 10AM in Portland. I get Gary moving. The whole Lodge is torn up by his rummaging about, taking his shower, getting ready to go. He swears he lost a t-shirt somewhere in the ordeal. Everyone's trying to find it for him. I convince the driver of the 11AM shuttle to pick us up at the back door of the lodge, because he can't breath strong enough to make it to the bus stop in time. Finally, at 11AM, we board the shuttle for the hospital.
The ride to the hospital is an adventure. Clearly, the driver's done this before. He negotiates freeways and the winding road to the hospital in break-neck speed. In fact, he's scary good. Gary thanks him for the wild ride and tells him he's a professional. In fact, he's a volunteer. It seems that the grand ole USA can't even pay bus drivers to get patients from one location to the other, and I notice that there are signs on the bus asking for volunteers.
We go to the 8th floor and meet Ann (highly recommended nurse-facilitator) and her assistant (award-winning admin) and they are upset at us for being late. A guy with a pony tail, whom I assume is Gordon Wells, said they have been looking for us. They end up sending us to the lab for blood tests. They tell us to do the blood tests, get something to eat, and return. We also go over some document about his blood and tissue being used for testing. He says he'd like to do anything that will help people who have this disease in the future, so he signs without reading -- I glance through it and it looks harmless, and the assistant says she will have a copy ready for us in the afternoon. If we don't like what it says, we can just undo it.
Unfortunately, the blood test is quite involved (27 vials of blood or so), and there's one of our Lodge-mates in front of us who has to do the same test -- and she seems to bleed slowly. We wait for over an hour to get his tests started. Finally, we get to the canteen around 3:15 and eat something I can't identify but reminds me of food we had in Cline's Corners NM about 12 years ago. We return to 8D at 4PM, and they act like we've been messing around. Gary gets a lecture about taking his Lactulose Solution. This is supposed to clear the ammonia from his brain and help him think better. It gives him diareahhahaa. He hates it. I can't blame him. He didn't take it yesterday because we were going to be in flight for so long.
Ann tells us that Gary's scheduled for a Chemo Embolization tomorrow. We have no real idea what that is, and they give some vague social-worker explaination about what they will do to him. We're supposed to be there on the first bus, check in on the 4th floor, and they will do the proceedure and keep him overnight on the 9th floor. I get Ann to give me a copy of the document we signed this morning. She seems surprised that I remembered. And she told him that his tests showed he was not sick enough to be admitted to the hospital. He thought she had the wrong results or something, because the platelette count she quoted was higher than he ever has had. At any rate, they sent us back to the Lodge.
We went downstairs and exited the hospital doors at exactly 4:30. The bus back to the Lodge should have been there, but... no bus. We waited. The last bus, we were told, leaves at 6:30. So we waited some more. We started to get cold. We didn't want to miss the last bus, so we waited outside. The gentleman at the front information desk had none (information, that is). Finally, at 6:20, the bus showed up and we got on board. A rowdy ride back, but this time I took notes on how to get from the hospital to the Lodge.
We were worried about the Chemo Embo thing and we talked about it -- at great length. We made a list of questions to ask. We decided to get mom to talk to Dr. Kahn back in Temple. Why couldn't they do the proceedure there? Why didn't they? They were going to do some kind of surgery at one point, but backed out because it was too dangerous. Was this the same thing? We didn't know.
We ate more of the chicken and potato salad from last night. Gary wanted Fritos with his food. I wanted a Diet Coke. I asked Roberto where there were snack machines. He gave me long and convoluted directions, and then offered me a Diet Coke. He gave me one of the Lemon ones that I hate. I didn't want to hurt his feelings, so I took it. Momentarily, I went down the long weird hallways to find the machines. I got Gary his Fritos and me my real DC. When I got back, Gary said he didn't eat Fritos, and that he asked for potato chips. I went out again and took the long walk to get him chips. I know he said Fritos.
I didn't feel like eating, but Gary insisted, so I ate some chicken and potato salad. Lights out at around 11 again, but Gary couldn't sleep.
Sunday, March 28, 2004
Horrible flight to Portland
March 28, 2004
7:30AM - Mom picks me up at my house with my bags packed and ready to go. Joe (very understanding husband) and I have been up until 5AM packing and making sure I have everything that Gary or I might need. I already feel beat to smithereens.
8:30AM - We stop at the Boerne HEB to use the bathrooms and buy extra cigs for Gary -- just in case he wants them.
9:00AM - At Gary's house. He's rummaging through bags and shuffling over a card table to find his latest prescriptions. He's trying to remember everything. He comes out to the truck and gives my grandmother and envelope with pictures he's saved and his dogtag (which he wore all the time).
10:00AM - Airport. There is much consternation over Gary's steel toed boots. There has been for days. He decides he'll just wear them and take them off to get through the metal detector. We get our baggage unloaded and he talks for a while on the side with my grandmother. Don't know what they're talking about. He is already tired. We get the bags checked and the porter informs us that he takes tips. We scramble for dollar bills. Hadn't even considered it. Gary refuses my offer for a wheelchair. We barely make it onto the plane. It leaves at 11:42.
11:50 - We're on the plane and relieved we've made it. Immediately before landing, Gary says, "When we get off, look for a head. I think I'm going to puke."
3:35 - We're in Dallas and due to board on the plane for Portland. Of course, the terminal is on the opposite side of the airport, and Gary just can't walk without losing his breath. He's also stopping at every bathroom to throw up, sometimes staying in there for 30 minutes. I'm worried we won't make the connecting flight, or maybe we shouldn't even try. He assures me that this is the right thing to do. I flag down one of those electric cart dudes who gives us a ride to the correct terminal. Finally, we board. Gary's really sick.
6:20 PST - We land at the Portland airport. Gary has thrown up all the way (that's a three hour flight, folks). He smells like bile. I follow Gordon's instructions and call for the admission and cab, and we wait. Gary seems to be feeling a bit better now that we're on solid ground. I flag down the cab and he strikes up a conversation about hunting and fishing in Oregon as opposed to Texas. He convinces the taxi driver to stop off at a SafeWay on the way to the Liver Lodge. He hasn't eaten all day. So I run in and get one of those roasted chicken, some potato salad and some bread, water and diet coke. It seems to be a long way to the Lodge, and the neighborhood looks like a lot of warehouses and junk yards.
9:00 PST - We arrive at the Liver Lodge. The taxi driver assures us that it just looks so dismal because it's late and dark. We're greeted at the door by Roberto, who was transplanted in January and can't help me sling luggage and another guy who says he's in chronic rejection and that no body from Temple ever makes it. Seems he's kind of moved into the Lodge permanetly. Later I notice he's the only one with an air conditioning unit hanging from his window. I think his name is Paul. I'm out of breath, and Gary's half nuts. Paul gives me a quick tour of the Lodge and I sign something that says I know what's going on. I'm in a daze. We move in to room 11 and flip the sign to "occupied." I dump out the bag of medicine he's brought, because I was told I needed to report a list of what he was taking, when, etc. We spend about half an hour figuring it out. Here's what we wound up with:
Finally, we eat our chicken, and we're in bed by 11PM PST. I listen to Gary snore, talk in his sleep, and breath... and when I can doze, I have nightmares. This Lodge is creepy.
7:30AM - Mom picks me up at my house with my bags packed and ready to go. Joe (very understanding husband) and I have been up until 5AM packing and making sure I have everything that Gary or I might need. I already feel beat to smithereens.
8:30AM - We stop at the Boerne HEB to use the bathrooms and buy extra cigs for Gary -- just in case he wants them.
9:00AM - At Gary's house. He's rummaging through bags and shuffling over a card table to find his latest prescriptions. He's trying to remember everything. He comes out to the truck and gives my grandmother and envelope with pictures he's saved and his dogtag (which he wore all the time).
10:00AM - Airport. There is much consternation over Gary's steel toed boots. There has been for days. He decides he'll just wear them and take them off to get through the metal detector. We get our baggage unloaded and he talks for a while on the side with my grandmother. Don't know what they're talking about. He is already tired. We get the bags checked and the porter informs us that he takes tips. We scramble for dollar bills. Hadn't even considered it. Gary refuses my offer for a wheelchair. We barely make it onto the plane. It leaves at 11:42.
11:50 - We're on the plane and relieved we've made it. Immediately before landing, Gary says, "When we get off, look for a head. I think I'm going to puke."
3:35 - We're in Dallas and due to board on the plane for Portland. Of course, the terminal is on the opposite side of the airport, and Gary just can't walk without losing his breath. He's also stopping at every bathroom to throw up, sometimes staying in there for 30 minutes. I'm worried we won't make the connecting flight, or maybe we shouldn't even try. He assures me that this is the right thing to do. I flag down one of those electric cart dudes who gives us a ride to the correct terminal. Finally, we board. Gary's really sick.
6:20 PST - We land at the Portland airport. Gary has thrown up all the way (that's a three hour flight, folks). He smells like bile. I follow Gordon's instructions and call for the admission and cab, and we wait. Gary seems to be feeling a bit better now that we're on solid ground. I flag down the cab and he strikes up a conversation about hunting and fishing in Oregon as opposed to Texas. He convinces the taxi driver to stop off at a SafeWay on the way to the Liver Lodge. He hasn't eaten all day. So I run in and get one of those roasted chicken, some potato salad and some bread, water and diet coke. It seems to be a long way to the Lodge, and the neighborhood looks like a lot of warehouses and junk yards.
9:00 PST - We arrive at the Liver Lodge. The taxi driver assures us that it just looks so dismal because it's late and dark. We're greeted at the door by Roberto, who was transplanted in January and can't help me sling luggage and another guy who says he's in chronic rejection and that no body from Temple ever makes it. Seems he's kind of moved into the Lodge permanetly. Later I notice he's the only one with an air conditioning unit hanging from his window. I think his name is Paul. I'm out of breath, and Gary's half nuts. Paul gives me a quick tour of the Lodge and I sign something that says I know what's going on. I'm in a daze. We move in to room 11 and flip the sign to "occupied." I dump out the bag of medicine he's brought, because I was told I needed to report a list of what he was taking, when, etc. We spend about half an hour figuring it out. Here's what we wound up with:
Promethazine - 25mg tab - 1 every 6 hours as needed for nausea/vomiting
Lithium Carbonate - 300 mg SA tab - 2 twice a day
Diazepam - 5 mg - 1 twice a day as needed
Tramadol - 50 mg - 1 every 6 hours for pain as needed
Furosemide - 40 mg - 1 twice a day to reduce fluid retention
Ciprofloxacin - 500 mg - 1/2 per day for prophylaxis peritonitis
Omeprazole - 20 mg - 1 per day 20 minutes before largest meal
Spironolactone - 25 mg - for fluid retention - he forgot it; we think this should be the dosage
Lactulose Solution - 2 tablespoons per day
Finally, we eat our chicken, and we're in bed by 11PM PST. I listen to Gary snore, talk in his sleep, and breath... and when I can doze, I have nightmares. This Lodge is creepy.
Thursday, March 25, 2004
Arranging Flights
The flight has been arranged via someone in Temple, TX. But I'm still unsure about how I'm going to get this short-breathed, thirsty, sick guy to Portland. I call American Airlines to discuss transportation for Gary. I'm concerned he can't make the walk in Dallas from one terminal to the other. The woman on the other end of the phone was very understanding, but said we'd have to ask for assistance from the ticket counter -- it couldn't be pre-arranged.
Wednesday, March 24, 2004
Pre Flight
We checked our bags, pre flight -- zero hour
The Very Abbreviated Backstory....
I have been just fired (laid off, sorta) from my job at NewTek, and I am the obvious person in our very small family to go act as caregiver for my Vietnam-vet Uncle. I'm writing all of this blog using notes I took during the ordeal in the hopes that someone may read it, and it may inform them as to what's up with Liver Transplant patients whose orders originate in Temple, TX. Also, I want to get the chronology clear in my mind as to what happened. Over a month later, I am still confused as to the order of events, and I think that sorting through all my notes will help me figure out what actually happened.
So Today....
Spoke with Gordon Wells via telephone. He explained how things would go. We will be sent to Portland, OR for an evaluation week. If things go well, my uncle would be approved for a liver transplant and placed on the transplant list. If things didn't go well... it would just be over.
He would be subject to a slew (for you non-Texans, that's a "shit load") of tests that would determine his eligibility.
We leave on Sunday, March 28 for our first stop in Dallas. The flight will depart San Antonio at 11:42. We should arrive in Portland some time around 9PM, where we are to call the VA Admissions Office and they will call RadioCab to take us to the Liver Lodge in Vancouver, WA, a communal assisted living barracks where liver patients stay while they are evaluated or after transplant surgery.
The Lodging unit was C-13, and comes equipped with 2 beds, a fridge/freezer, TV, closets / dresser, and a small table. There will be only one phone for about a dozen residents, and two communal bathrooms, so Gordon said we should bring a robe if we wanted to take a shower. Bring travellers' checks, a bank card, sweaters, a rain coat, medications, etc. There will be a shuttle to take us from the quarters/clinic to the hospital, about 12 miles away in Portland. 7:20AM is the first run of the shuttle, and we should be on it on Monday morning to start the fun. Gary would be admitted to the hospital on Monday morning to complete the testing as an in-patient, and I would stay at the Lodge to act as his caregiver on a daily basis.
The Very Abbreviated Backstory....
I have been just fired (laid off, sorta) from my job at NewTek, and I am the obvious person in our very small family to go act as caregiver for my Vietnam-vet Uncle. I'm writing all of this blog using notes I took during the ordeal in the hopes that someone may read it, and it may inform them as to what's up with Liver Transplant patients whose orders originate in Temple, TX. Also, I want to get the chronology clear in my mind as to what happened. Over a month later, I am still confused as to the order of events, and I think that sorting through all my notes will help me figure out what actually happened.
So Today....
Spoke with Gordon Wells via telephone. He explained how things would go. We will be sent to Portland, OR for an evaluation week. If things go well, my uncle would be approved for a liver transplant and placed on the transplant list. If things didn't go well... it would just be over.
He would be subject to a slew (for you non-Texans, that's a "shit load") of tests that would determine his eligibility.
We leave on Sunday, March 28 for our first stop in Dallas. The flight will depart San Antonio at 11:42. We should arrive in Portland some time around 9PM, where we are to call the VA Admissions Office and they will call RadioCab to take us to the Liver Lodge in Vancouver, WA, a communal assisted living barracks where liver patients stay while they are evaluated or after transplant surgery.
The Lodging unit was C-13, and comes equipped with 2 beds, a fridge/freezer, TV, closets / dresser, and a small table. There will be only one phone for about a dozen residents, and two communal bathrooms, so Gordon said we should bring a robe if we wanted to take a shower. Bring travellers' checks, a bank card, sweaters, a rain coat, medications, etc. There will be a shuttle to take us from the quarters/clinic to the hospital, about 12 miles away in Portland. 7:20AM is the first run of the shuttle, and we should be on it on Monday morning to start the fun. Gary would be admitted to the hospital on Monday morning to complete the testing as an in-patient, and I would stay at the Lodge to act as his caregiver on a daily basis.
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