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.
Tuesday, April 06, 2004
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.
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