Steve Kay
Mar 14th 2006
MY UPDATE PAGE
March 14, 2006. Tuesday. I got up and didn't feel well. I hadn't had much sleep. I was wheezing and coughing off and on every hour or two. I took an Ativan about 3:30am because I was a little anxious. It didn't do much but it calmed me down a little. I got a couple of hours sleep in a row for 2 or 3 times. I got up as Lydia arrived. She got the handicap placard and off she went. I got up while she was downstairs. I had been sucking 3 liters/minute all night and am really beginning to notice the difficulty getting any air in the bottom of my lungs. After Lydia finished she left. I called Jose. He was only a couple of blocks away. He said he would stop by for a minute. I put my oxygen on and headed out to meet him downstairs. The elevator was broken. I called him and told him I would take the stairs and would meet him half way on level 3. By the time he arrived I was on the ground floor already. He could only stay a minute or so since he had a pick up soon after. He left and I headed back to the lobby. I thought the elevator would be fixed right away. There was a fire truck in front of the building. It turned out to be a false alarm but it shut down the elevator. I was told that it would be 2 hours before it was fixed.
I thought humm. I had a massage appointment in 30 minutes. I decided to walk up. My plan was to go up slow and stop at the second floor and take a break. I set out on my trek up the stairs. I got to the 2nd floor and was panting like a tired dog. I sat down to catch my breath for the next 10 minutes. Molino the building maintenance manager saw me struggling and offered to carry me up with one of his assistances but then he said he would be right back. I waited until I got my breath back and off I set. This time I could either take the stairs 2 more levels or try to go all the way and make it to my floor the 5th floor. I decided even though I was gasping for air on level 4 I could make to the top. I did. When I got to the 5th level it was only a short ways away to my front door. I got to my apartment and immediately put on the concentrator oxygen at 3 liters/minute. I sat in the big blue chair for the next 10 minutes just calming down. I decided to take a picture of my condition so I did. It is the one on the left above.
At 11am Michael arrived just as I was making a fried egg sandwich. I ate the sandwich then Michael gave me a foot massage for about 30 minutes. I dozed off and he left. I woke up a few minutes later and waited for my 11:45am appointment. I had an appointment with an IHSS worker that was named Howard.
He didn't show up by 12:15pm so I called him. He said he was sorry and would be right over. I waited and waited and waited. No Howard.
My next appointment was at 2:30pm with the social worker from IHSS. Andrea arrived at 2:30pm and started reevaluating me. I showed her my film and then gave her a tape. She told me she would now give me 120 hours. I used to have 83 hours of worker time that the city pays for. Today I got an increase to 120. I thanked her and she left.
I finally got a call from Howard the missing appointment at 3:15pm. This time he told me that he forgot to bring my phone number and when he got all the way across town he had to go back. I told him thanks for calling but I didn't think it would work out.
I called IHSS and asked for a new list of names.
After that I remembered that tonight was the night that my name was coming off the medallion taxi list. I had added my name on the list in 1992. Back then if you drove for 5 years full time you qualified for a medallion. I had qualified under the old rules before I decided to go into the limousine business. The city since changed the rules. I am now not eligible for a medallion even though I kept my A card up for all these years. An A card is a permit to drive a taxi in San Francisco. I still have a current A card that was renewed last December 2005 and is good until December 2006. But tonight my hope of ever getting a medallion came to an end. The taxi commission removed my name from the list. I went to City Hall with Michael and said my goodbyes and thanked the City for giving me the opportunity to drive a taxi for 5 years. My goodbye was filmed for live TV on public access television for the taxi commission hearings tonight March 14, 2006.
I had Michael drive me home. On the way I offered him an opportunity to be a IHSS worker for part of the hours that I have available. He said yes he would do it. I will now pay him for his time helping me. I started typing this update. I decided to take another picture after I returned from City Hall. It is the other picture above. I haven't had the television on all day. I guess it's time for a little Law and Order.
I am feeling more difficulty breathing in the last week. I have put my Ativan and Morphine back in my shirt pocket. I feel more safe going out of my house with someone to accompany me. I am still ambulatory but am feeling weaker and weaker. I have a hard time getting out of bed some mornings and look in the mirror and see my arms are flabby and the muscle mass is going away.
I am so grateful for all of the support from the people that are helping me. It is amazing how so many people are so compassionate in this end of life situation. I understand how some others are finding it hard to deal with death. I have been abandoned by a couple of my friends and many of my family but I am not mad at them. I understand they need to take care of themselves. I am glad that I don't have to spend this difficult time alone. Thank you to all of the people that are making this process manageable on an emotional, spiritual, financial, and actively supportive level. You are making a big difference. I am not sure I could handle this as good as I am without all of the love, support, and prayers that you are all giving me.
I look back to November 11th 2005 when I was first diagnosed to die in 2-3 months and told the only therapy was chemotherapy. I remember deciding not to do chemotherapy but instead deciding to live everyday as long as I can. I remember choosing to live quality days as much as I could. I have lived just that. It is now March 14th. 4 months have passed since that prognosis and I am still walking around. I am so thankful to God for these days. If I would have chosen chemotherapy I would have been dead by now. I am still not too far from the end but what a great way to end.
I got to perform at Purple Onion with my best friend. I got to share my story with Shari Carlson's singing class. I got to have that final performance filmed. Then I got to learn how to edit on an Apple computer. I got to complete the film project. I got to screen it. I got to share it with people and inspire others to live life to the fullest and thank God for the gift he gave you. I got to go to Las Vegas and rent a scooter. I got to get to a point where I am today grateful, thankful, peaceful, and content.
This was another quality day. I am not sure how many I have left but I keep thanking God for each one as a bonus.
That's it for today.
Steve
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