On Friday evening, we had the show until 9, and a lot of people came to connect with me. Stuart Dunkel was there painting new works, and people came to meet him as well. After we headed back to the hotel, I went to the restaurant and watched everyone eat. When finished, I had Amy order me some vanilla ice cream, which I took to the room. I had a couple of drops of the RSO, and it was very good. After brushing my teeth and getting rid of my shoes and pants, I  tried to get on the bed. Like last night, it didn’t work, so Amy called Neil and Lance to help me get into bed. I went to sleep. 

Saturday night, I woke up twice. The first time Amy came around and made sure the urinal worked correctly, the second time I made sure the hose was sitting down a bit… worked well. At 7, Amy got up to shower, and when she got back to help me get up, I informed her that I was too tired and needed to sleep. So rather than going to the show by 9:30, we decided 12 would be better. By 10, I got up with a lot of help from my wife, showered, brushed my teeth, and took my medications, protocol, and shakes. Amy put a towel over me, which was a good thing because at one point I started coughing and the syringe overflowed, and 2 ounces poured out.

I cleaned up, got dressed, and we headed to the car; Neil came back to help. We got to the show, and people were stopping by to see me and Stuart. I took a shake around 3 and used a portable urinal, which worked well. By five, the show was over, and we headed back to the hotel. They invited me to join them for a brewery trip and dinner, but I declined. Amy took two bananas and mixed them for me, but they were so liquid that most of it spilled out of my mouth. Around 7, I took a shake through the feeding tube, almost coughed, as it seemed to move up to my throat, but took a small break. At 7:40, Amy came back with a burger for me. It was good. Finally had some ice cream and RSO.  I had the same issue getting into bed, so the family helped me.

Sunday, I woke up a few times and made a mess. We finally got up Amy helped me get out of bed (needs to push me from the back to get my legs to the edge of the bed). I used the scooter to make my way to the shower. After we finished, I brushed my teeth, and then had my breakfast and drugs. Once we were ready to head to the show, Neil came back to help me get into the car, and then put the scooter in the car. Made it by noon and just hung around.  By about two, I went into the closet, had my lunch, used the urinal (which Amy had cleaned), and then hung out for the rest of the show. When it ended, the family cleaned out the closet and then started packing. I went into the closet and had my dinner, drugs, and the urinal (it is crazy how many times I need to use it). They finished packing in about 2 ½ hours, and Neil took Lance to the train, and we took Nathan back to the hotel. Amy went for dinner, and when she returned, she brought me spaghetti and meat sauce. After I ate, she went downstairs and brought me some ice cream (used the RSO). Neil and Amy helped me get into bed and went to sleep.

Monday, I had the same issue during the night (took the underpants off early in the night). Woke up early and had the Radicava (I will say the amount of coughing and grunting is crazy). We got up around 8:30 and got ourselves together since we were heading home. There was so much stuff in our bedroom, and while I was eating, Amy took stuff down and into the car. By 10:30, Neil and Nathan came by with a luggage cart and helped move all the big stuff. We finally got into the car and headed home – Amy did it in under 4 hours! After she unloaded everything and got me upstairs, we decided to get me a haircut and shave before my physical therapy. Got to the barber shop around 4:35 (was in a wheelchair and then walked to the therapist). The therapist did a few things with me, and then he helped me get back into the car (Amy had bought us dinner, Italian food, and got me a bunch of ice cream). Amy helped me get out to the car, onto the first chairlift, then up for the walker, then she helped me get into the indoor chairlift, and then into the kitchen for dinner – chicken parm! After I had an ice cream, I had another about an hour later with the RSO. Finally brushed my teeth, got to the bedroom (which was a very slow process since my feet were swollen), and almost fell on the floor (somehow I was close to the bed so I was able to get on the edge). I finally got into bed with Amy’s help, and she put some ice on my feet. I texted the family that I was not going in on Tuesday.

Tuesday night was the same as other nights – and I had to remove my underpants at one point. Not sure what time I took the Radicava, but by 8:30 we got to the shower (Amy used the wheelchair), washed off, got back in the wheelchair (after a bit of time on the toilet), Amy took me to the bed, got dressed, and then I used the walker to get to the kitchen. Kathy (our housekeeper) was there, and Amy asked her to put my compression socks on, which she was happy to help with. After breakfast, I went to my office, and Amy had things to do. When she got back, my parents came over to spend a little time with me, and then I went back to the office. Around 4:00, a gentleman came by to see about reconfiguring the bathroom. At 6:45, she started making me a White Castle dinner. After I had two ice creams and RSO, I brushed my teeth in the kitchen. After I got up (which is getting more difficult), I went to the bedroom, sat on the edge of the bed, and Amy got me ready. Then, with her help, I got on the bed. My legs are swollen again, so she put ice on them, and finally massaged them. I went to sleep.

I will say that now both my legs and arms have tremors. I am also having trouble walking, and as I mentioned, my feet are swollen. I am also having difficulty sitting up. When I’m sitting in a chair, my body constantly moves left or right – worried that I will fall.

On Wednesday, I woke up a couple of times, but I was using a different urinal, and it worked well. I got up about before 6 and took the Radicava; then fell back to sleep, and we started the process around 8:30. Amy had to roll me into the bathroom (my feet are so swollen that my left foot does not lie flat on the floor, it tilts left). After we were done, I got dressed and then walked to the kitchen – it took so long. I ate my breakfast (the shaking of my hands made it so difficult), brushed my teeth, and then got on the chairlift. It took a bit of time to get to the car. We arrived at the gallery around 12:30, and my daughter put on my compression socks. I also received a lovely gift from an artist – Sharon Hourigan! I had my Doxy, followed by lunch 2 hours later, and then some gelato. We headed out around 5:20 and got home before 7:00. Amy made me some dinner, and while I was eating, a young gentleman arrived who would live here during the week to help me. Amy talked to him for a while, and then he went into the kitchen to meet me. He will start on Monday! After, I had some ice cream and the RSO. Then I made my way to the bedroom with the wheelchair. Amy helped me get into bed, and after that, I went to sleep.

Thursday, I got up before 6:00 and took the Radicava while I was in bed (the main issue is that while the bed can lift, during the night, somehow, I slip down, and it isn’t easy to keep myself at least 45 degrees after I take the medication. I do my best to keep up, but it is very difficult and painful. I fell asleep and Amy got me up at 8:00. She took me to the shower (left foot and ankle were a bit better), then rolled me to the bed to get dressed – it took a good hour to get everything done. I finally made it to the kitchen and had breakfast, which took at least an hour to finish. Then we made our way to the car, another slow process, and we were off, but it did not last long because the back tire was flat. We went to a local gas station (Hoffner’s Service Station), and they determined that the tire had a large hole in it and needed to be replaced. We left the car at the station and the owner took us home. We did not go into the city. I guess it was a good thing because the weather was going to get crazy; in fact, Lance sent everyone home from the gallery around 2:30. Amy picked up the car and went to get a bidet toilet seat. We had dinner, mine was stuffed pepper (mixed), and some ice cream. Amy called my brother and our good friend Mark Hoorwitz to see if they could come over to install the bidet – they did! After they finished, they helped me get into bed, and Amy put ice on my feet (they were swollen again). A bit later, she massaged my feet, and I went to sleep.

Friday, I was good for most of the night, but when I woke up to take my Radicava (5:50), the new urinal leaked. I went back to sleep and at 8:00 I got up and showered, dressed, and had breakfast – taking a lot longer these days (I am also having trouble typing on the computer). Around 10:00, people stopped by to deliver chairs and tables for a party we are hosting on Saturday to celebrate Amy’s birthday (August 4th). Kathy showed up a little early and helped get to the car. We stopped by the framer and then got to the gallery around 12:30. When we arrived, Amy’s brother and his wife (Mark and Sheryl Scheer) were there – they are the ones who gave me the scooter. I went to my office to take care of some things, and around 2, I had the Doxy. Lunch was really late.