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.