(another long one, sorry)

On Friday night, I had dinner before Donald and Hildy Teplitz got here. They brought dinner, and Amy and Teddy joined them. I sat with them and had some pineapple ice for dessert. They left around 9, and little Teddy stayed up pretty late. Amy slept with her in another room. I woke up several times and had trouble getting out of bed one time, so I used a portable urinal.

On Saturday, I got up around 9:30 and worked on the gallery’s weekly email. Then I went back to the bedroom and took a long shower. Once dressed I did my exercises on the bed. I didn’t get to eat breakfast (I had 2 yogurts, a protein shake, used the feeding tube for the protocol,  B12, and one medication) and took the other medication after 11. My laughing seemed to be getting a little better, so Teddy was throwing me kisses and saying, “I love you, Papa.” Amy & Teddy went out for a walk, and I answered some emails. That afternoon, my mom came over, and a little later, Alyssa, Adam, and Benny came over. It was great to have them all here. My mom sent over some cakes so we could celebrate her upcoming birthday – she will be 88 on Monday.

Mom left, Adam helped her get into her car, and then they hung out here for an early dinner … Italian food. Amy ordered breaded chicken with tomato sauce, and when it arrived, she used the Vitamix to make it mushy … it was perfect. I ate in a chair in the living room; they ate in the dining room.  After they finished, I discovered that little Benny had some of the food I had. The little ones took a bath and then headed home. Amy and I watched a movie, and she gave me some Carvel vanilla ice cream … had two of them. That night, Amy told me not to get out of bed and use the portable urinal. I woke up 3 times and did just that.

One of the professionals told me that when I eat, I need to keep my chin down so the food goes into the right place… a very good piece of information. It has made eating a little easier, though sometimes I do lift up my chin and cough.

Sunday morning, I got up and went to check my emails … when I started looking at them, my eyes were burning. I went to the bathroom and put some water on them, but it didn’t help, so I went back to bed for a bit. When I got up, I saw a text from Alyssa that she, her husband, and two kids were running a 5K for ovarian cancer in honor of their grandma. Boy, she is doing a lot of running these days! Oh, she has upped her ALS fundraiser to $12,500 – the people who have donated are AMAZING! I then went to the kitchen, and Amy gave me a banana and made some waffles. The amount of syrup I need to use to make it moist is ridiculous, but it helps with all the calories I need each day! I then got ready to shower and noticed that my left ankle was swollen – I guess I was losing more muscle. That afternoon, Amy first went to Costco, came back with a lot of heavy items that I couldn’t help with, and then went to BJ’s to buy more. Again, I was not able to help bring in the things she bought.

Mark and Robin arrived around 4:30 and stayed until about 9:30. Mark decided to make food for me and went to the local supermarket, where he purchased a variety of items. Amy ordered dinner from the local Italian restaurant, including chicken parmesan for me, which she blended in the Vitamix. It’s always nice to have some different foods these days! While eating dinner, we played Scrabble. I had the worst letters, basically vowels, but on my last play, I had a seven-letter word and ended up winning. Mark was still cooking while I had my pineapple ice and took my medications. I then waved to them as I went to the bedroom, around 8 o’clock, to get ready to do my leg exercises and then go to sleep. By 9:30, they had left, and I was going to sleep by 9:50. That night, I woke up several times and used that portable urinal.

On Monday, Amy had a doctor’s appointment out in Massapequa at 9:30, so we both woke up pretty early. She left at about 8:30; I showered, did my leg exercises, had breakfast (waffles and medication), and then worked. When Amy came back, she informed me that one of the specialists was coming over. She then went to Dodi’s house to pick up a toilet rail – Dodi bought it for her mom, but she never used it. Then the specialist stopped by; she was great. She provided some ideas on how to reduce the swelling in my ankles and discussed other related matters. After she left, we had lunch – grilled cheese and soup, plus one of the protein drinks that went through the feeding tube – and then I went back to working on the computer, answering emails and writing a post, among other tasks. For dinner, Amy took one of Mark’s food preparations and used the Vitamix … It was nice to have meat and potatoes. That evening, while in bed, I had to put ice on my feet due to the slight swelling of the ankles and redness on my feet. It turns out that the medications can cause some of that.

On Tuesday, I got up at 6:15 and took my Doxy, and then at 7:30, I had breakfast, yogurt, and all my medications. Once done, I made my way to the shower and got dressed. Then I took a slow walk down the steps, using a cart to walk towards the front door; Amy helped me put on my shoes, and then I went down the front steps to get in the car. I tried to get into the back seat behind the driver’s seat, but I was unable to do so. Amy turned the car around, and, with her help, I got in the back seat behind the passenger seat. Then, I slowly slid over to the other side. During the drive, I felt nauseous – I think it was because of the feeding tube since I never felt nauseous before. When we got to the gallery, there was a crazy amount of rain, but Alyssa and Lance came over with a walker and umbrella to get me into the lobby. Then I took the electric scooter to get up to the gallery … it had been more than a week since I was last there. Amy went to park the car and then headed over to the eye doctor to pick up my new glasses! When I got to my desk a box with two syrups from Kim Dailey and a hat! I spent most of the day texting with GoDaddy, and in the afternoon, a client stopped by to say hello and discuss Daniel Ridgway Knight – him talking and me using my app. When we headed home, I sat in the front seat and still felt a bit nauseous. I waited a little bit before having dinner, so I went back to texting GoDaddy. Around 9:30, I got in bed and, iced my feet for about 15 minutes and then went to sleep – only woke up twice that night.

Wednesday, I was up close to 7, so I decided to take all my medication, the protocol, and two of the protein drinks using the feeding tube. We headed out to the city around 9:40 (I wanted to wait a bit before getting in the car; this time, I had very little nausea). We stopped by the conservator and picked up 5 paintings. I got to the gallery, and Lance, Alyssa, and Neil were there to help, and I worked on the computer. Around 2:40, Amy and Neil went to look at an apartment (thinking it might be best to spend the weekdays in the city), but it was very small. Yesterday, Alyssa ordered Disposable Dental Cotton Rolls, and they arrived today. I tried using two, and they helped a little with the saliva. The doctor told me that at some point, I could have Botox, which would help reduce the saliva. Lance helped me get into the car, and we headed home. Amy made the soft version of my chicken parm, and then I had a large Carvel vanilla ice cream. After I got into bed (of course, there was stuff to do first, Waterpik, brushing, etc.), Amy put the ice on my feet, and once done, I was asleep.

Thursday, I got out of bed at 5:30 (I did wake up twice before) and took three of the medications in the feeding tube and one by mouth with apple sauce. Eating food is becoming more difficult since I constantly bite many parts of my mouth, which is really annoying. I worked on the computer for an hour and then returned to the kitchen, where I used two of the Nestle protein shakes through the feeding tube and two medications with yogurt – also difficult. Waited a bit of time, showered, and then we headed to the city. Moving from the bedroom to the car takes a good deal of time. I started at 9:40 and finally got into the car around 10:00. We made it to the gallery around 11:20, and Lance & Neil came down to help. Having family who really care is incredible! Spent the day on the computer. Had Dunkin eggs and cheese for lunch (cheese was sticking to the teeth), and a little later, Lance made Gelato.  We went home after 5, and the drive was crazy for Amy; it took about 1 hour and 45 minutes for a 19-mile commute. Dinner was also difficult, so Amy went to Carvel and got me a bunch of ice cream. Finally got into bed, and Amy used the ice on my feet. Afterward, she spent about 30 minutes massaging both of my feet and legs. I went to sleep after 11,  and woke up a couple of times.

Friday morning, I got up at 7, went to the bathroom, then the kitchen, and took all the medications through the feeding tube, including 2 protein shakes, since I am constantly biting the inside of my mouth. My ability to walk kept getting tougher as well, so I slowly made my way to the garbage and sink after ‘eating.’ Breakfast took about 1 hour. I went to take a shower, and the entire process took about 1 hour and 25 minutes. I then made my 15-20-minute trek to the car, and we were off. We stopped by the framer and then got to the gallery around 11:30. Lance and Neil came down to help, and when I went upstairs, Alyssa told me that Benny was in the gallery! He is so cute! At lunchtime, Amy went and got me the eggs from Dunkin without the cheese. I could not eat them because they broke up into small pieces and caused a problem. She finally made me a grilled cheese and soup — a lot of biting in my mouth. By 3:30, Lance made some strawberry sorbet for me.

One two more thing: I’m using a lot of paper towels and napkins because of all the saliva. Sadly, there are many times when I do not have one, and I drool on the floor, carpet, shirt, pants, etc. I am also only getting Potential Spam phone calls now — dozens of them each week.