Steve Kay
Mar 23rd 2006
MY UPDATE PAGE
March 23, 2006. Thursday. 12am I took 8 drops of morphine and 2 Ativan because I couldn't sleep because I was wheezing no matter which way I turned. I tried to go back to sleep, but I couldn't. I was anxious and trying to cough up green gunk, but it wouldn't come up. The coughing made the muscles in my chest tight. At 2am I took 8 more drops of morphine and 2 more Ativan. Still nothing changed,. I hadn't slept and was now concerned. I called hospice by the bay and spoke to the triage desk. I asked to speak to the nurse on duty. They told me to take 8 more drops of morphine and 2 more Ativan. They asked if I wanted a nurse to come for a visit. I said "yes". 15 minutes later a nurse came to my apartment to check on me. I reviewed everything and he said to take 8 more drops of morphine. We waited a few minutes and then he said to take 16 more drops of morphine and 2 more Ativan. 20 minutes later I was still awake and he told me to take 16 more drops of morphine. He then said he had to go. I replied "I am not asleep yet". He decided to hang around. I got dozy in 20 minutes later. He said goodbye and left.
I woke up at 6 am and was feely groggy. I felt unsure of myself to get out of bed. I took my time. Things seemed a little fuzzy. I got some more water from the refrigerator and came back to bed. Lydia arrived at 9:15 and ran my bathwater. She helped me into the bath and helped me get dressed. She left about 10am.
I had arranged to be picked up at 10 for my 11:30 appointment with Dr. Cafaro. The driver of the van called at 9:50am while Lydia was still here to let me know he was down stairs. I told them I would be 10 more minutes. I was still feeling groggy so I decided to take my wheelchair. I put a fresh B tank in my O pod and made sure I had 2 fresh B tanks in my black bag. Lydia pushed me in the wheelchair to the van. The van had a lift so I was raised right on to the van in the wheelchair.
I paid my $1 for the ride and went to the doctor's office. I went up the elevator and waited in the lobby. I was real early. I sat for about an hour and a half until my appointment time. I was using 4 liters per minute on my O pod. I only had and hour and a half per tank at that rate. Mark the doctor's assistant called me in and they took my blood pressure. I weighed 173 lbs. He said he would send in the Dr. Cafaro. She came in and asked how things were going. Maurice from Hospice by the Bay had suggested I stop taking HIV meds. She agreed so I stopped the HIV meds today. We also discussed the situation with the green gunk and the lymphoma making it more difficult to breath. Dr. Cafaro asked me if I wanted to go to the hospital. I said no. She asked if I wanted to go to a hospice and I said no. I had lived in one for over a year and I didn't want to go again. I told her I wanted to die in my own apartment. She said that is fine. She ordered a hospital bed to be delivered to my apartment tomorrow. She also said she would get me a morphine pump so that I can control the pain level myself. I thanked her for allowing me to have these choices for the end my life. I didn't choose to take the chemotherapy in November when it was presented as the only option for treatment and I am still alive. I have gone to Las Vegas 3 times. I made a film that has helped other people that I did not even know. I am grateful to finish my life with quality days. I understood that both choices I had in November ended in death but I am really glad for the choice I made. Dr. Cafaro told me I was amazing. I asked her if she would come see me at my apartment in my final days. She said she would come once, since she didn't do that very often. I thanked her and left.
The van was outside and took me home. I then called Carlos at New Leaf. I told him I didn't have enough energy to come to his office today. I asked him to my apartment. He said yes. Carlos arrived at 3:10pm. He sat in the black chair and I sat in the big blue chair. We talked and finished at 3:50pm. At 4pm Open Hand people came with lunch. Then Maria Elena brought some fish, rice and corn on the cob. I hadn't eaten the Open Hand meal so I gave it to her. She stayed and cleaned. Next Michael called. I invited him to come by at 6:30pm. I told him I needed to get out for a while. Matt was supposed to come at 6pm until 8pm. Matt called and changed his arrival time to 5:30pm. Michael showed up early at 5:00pm. Matt knocked on the door at 5:30. Maria Elena hadn't left yet. I had gotten a call from Costco. They told me my new glasses were done and that I could pick them up. I asked Michael if he would go get them. He said he would. Maria Elena left about 5:45pm. Matt and I talked for a few minutes. Michael came back with my new glasses. I can now see without having to look through scratches any more. If I only have a couple of weeks to live I might as well be able to see what I can without scratches. LOL. Charles has volunteered to coordinate the vigil people to sit with me at the end. He has agreed to organize the scheduling. I gave his number to Michael, Shari, Maria Elena, Jose, Simone and Matt. If you would like his number to help let me know. Shari told me about web-appointments.com. It is an online scheduling program that will allow you to pick times that you would like to help. Charles is looking into it.
At 6:30pm Michael and Matt took me out for a little drive in Michael's van. Michael checked the black bag to make sure that I had fresh B tanks. He also put a new B tank in the O pod. Michael got my jacket. I sat in the wheelchair and was pushed to Michaels van. We drove to the Ferry building. We parked and watched the bay bridge. It was really pretty all lit up under the moon light. It was nice to get some fresh air and just to be outside for a while. I felt that I was still alive. I got thirsty. I asked Michael if he could go to the World Trade Center Club to get me a cup of water. He came back a few minutes later with some of water. Matt asked if we could take him home to his house. Michael said we could so we did. Michael and I then came back to my house. We hung out for a while and watched Law and Order. I was in the Big Blue Chair and Michael was in the Black chair. When Shari called Michael. He mentioned that she had called about 20 minutes later. He said she was wondering if she could come over after he left. I called her back and we arranged for her to come over tonight. Michael and I watched TV until I fell asleep. When I awoke at 10:30pm. Michael was gone. Then the entrance bell rang to let me know someone was at the front door. I guessed it was Michael and Shari. I buzzed them in. Shari hung around and is typing this update for me tonight. I didn't feel like typing tonight.
Oh, I also I just remembered that I talked to Tom from Ace Pharmacy and we started on the timed release morphine. 12 hour tabs to ease the pain of the chest muscles. Tom sent the delivery guy to pick up my HIV meds. He also sent back the vitamin C and the multivitamin. I am very grateful for him.
I got a call from my sister Nanc and she is on her way with her friend Jen to see me. She will arrive sometime Friday. I also got a call from Howard Meehan. He also wants to come by tomorrow as well.
That's it for today.
Steve
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