When I asked him how he was, he said fine. When I asked him if he was still in despair, he said no. When I asked him if he was finding his current state of affairs interesting, he said yes. Halleluiah!!!!
Mike's blood sugar was 116 tonight.
I learned there are a ton of calories in the TPN, the intravenous nutritional supplement.
Bad news: This isn't anything new; it's just new to me. Although Mike's not eating anything for 3 weeks, he has gained 10 k. from his former weight. This is all liquid gain. Some of the liquid is from his belly; others are from all the IVs he has that are all in liquid form. It is also possible that he is actually gaining weight. He sure doesn't look like it
Wow! I just spoke to the doctor, who is the primary on Mike's case, Dr. Izawa, the surgeon. He didn't present a very optimistic view of the situation. (Details below in italics.)
When I got to the ashram last night, my first goal was to get my laundry started. I had asked to be shown where the washer and dryer were before I Ieft in the morning because I wanted to do laundry when I came home. I had to go outdoors and around the side of the house in my bare feet in the rain, walking on cement pavement and then slippery rocks.
When I came home, it was dark. I got the laundry from my upstairs room and headed to the washing machine. There were some lights triggered by motion detectors that lit up and guided me part of the way, But, when it came to the stretch in front of the machines, I was dependent on moonlight. While I could load the clothes and put in the soap, I couldn't see the dials worth a damn. I went in the kitchen to get some help. With the light switch on, I could see the dials but the arrow on the dial had faded completely. Didn't do much good. The young girl told me she just set the dial 'this' way, and it always seemed to work. Once the wash was started, I went upstairs to watch part of a movie Jean recommended to me, "The Whole Wide World." Lovely movie. An early one of Rene Zellweger. I went back down to load the clothes into the dryer to be picked up in the morning and went to bed.
I woke up this morning at 7 am. Note, I slept through the drumming. I had a good night's sleep. Thought to myself, breakfast isn't going to be served until 8:30 anyway, I'll just sleep a little longer. I did wake briefly when the shofar was blown, first once when the service started and again, later, when it was blown three times, but fell right back to sleep. I woke up at 8:30 and had to rush. The residents of the ashram were fasting today because it was a religious holiday, but they had set aside some food for me. Since I was running late, I got it to go.
My first stop of the day was Target. Mike wanted a clock he could see, and I wanted to look for some thermal pads which can be worn in gloves to help warm his body. Nothing of the sort could be found in the sporting section in Hawaii. I found some thermal gloves on Amazon.
I had called to speak to Mike before I left the ashram. I was told he was out of his room, getting a CT scan. When I called later, Jeff, a dialysis nurse, answered. Mike was in the middle of a session. He didn't want to talk. When I finally got there, he looked kind of out of it.
I was going to need help hanging up the clock because I wasn't tall enough to reach as high as I needed to, and I don't think they wanted to see me on a step-ladder. Jeff, the dialysis nurse, helped me out. To hang up the clock, I bought some hooks by Command that can stick to a wall without damaging the paint. I bought two sizes. Neither worked, one was too small, and one was too large for the hole in the clock. Jeff went out and got a large paper clip, made it into an S-hook, put one end into the back of the clock, and hooked the other end over a whiteboard attached to the wall. Perfecto!
A deacon candidate, Marlo, visited, He visits once a week. It is much appreciated. He was there when Dr. Izawa spoke to me about Mike's condition and what his plans were.
Dr. Izawa's report wasn't very optimistic. He says that the CT scan which was taken this morning shows no change in his condition. It is unlikely that his body will be able to heal itself because of his kidney condition. His end-stage kidney failure means that he cannot remove fluids from his body on his own. He has actually gained 10 kg from the time he entered mostly from fluid retention, they believe. This does not show up in his ankles; it is all in his abdomen.
The dialysis removes fluids, but not enough. They can't pull out fluids too fast because his blood pressure is too low. Also, he is receiving tons of fluids intravenously. Everything is in a fluid form. I asked if they could increase the amount of dialysis. The doctor said that the dialysis was stressful on its own and didn't recommend doing it more frequently.
If his condition continues to remain the same, they will have to operate. This introduces additional risks. To begin with, he will probably have to have multiple operations. Second, any and all operations almost guarantee to introduce bacteria into the abdominal cavity and cause an infection.
I would describe the doctor as modesty pessimistic. The hospitalist, a replacement for Dr. X, is a woman from New Jersey. She confirmed Dr. Izawa's pessimism. She said, and I agree, it is better to be realistic. What a lovely surprise it would be to have Mike come out of this in wonderful condition. I hope to get another 10 to 15 years out of him.
The good news is that he is sure there is no infection. It would show up as bubbles on the scan. But, if there continues to be no change, they will have to operate. He can't remain this way forever.
After talking to Izawa, I was devastated. I called Damon and told him what I had learned. I think the whole family has to come out before the operation, since this procedure may lead to other complications, and possibly death. Tom, the pancreatitis survivor who contacted me, said he has multiple operations. It sounds like his path was very much like Mike's. He said he wouldn't be alive today if it weren't for his wife's efforts on his behalf. I don't know what she did. I'm going to have to find out. I still find my primary role is arranging to make him more comfortable and listening to him complain. However, today I really did intervene medically. A lab tech came by and wanted to take blood. Mike was in the middle of receiving a blood transfusion. I pointed it out to the tech. He said he would come back later. Again, I have no idea how people deal with a situation like this without an advocate by their side most of the day.
Mike generally is not open to the mind/body connection. In our early days, he actually made fun of me for holding this belief. But he made fun of anyone who held a different opinion from him. He was so calm and somewhat flippant as he spoke that I actually thought he was joking. I was shocked when I found out he was seriously putting people down. I called him "an equal opportunity arrogator" because he didn't discriminate by race, creed, age, or gender. I knocked that out of him. I have a low tolerance for arrogance. Not sure quite why this is such a bug-a-boo for me. The expression is, "If you want to know who and what you really are, see what you project on to others." While I don't see arrogance in most people, when I do see it, I want to run for the hills.
Now that Mike's desperate, he's open to my suggestions. He complained again that he had to pee. The nurses always come and place a urinal. He can never pee, but the action of placing the urinal seems to give him some relief. I believe the Tylenol does provide him with relief from the constant feeling that he has to pee. The nurse, Tim right now, came in to give him that. Mike commented that Tim was a nice man. He's cheery, and he looks somewhat like Elijah, B's grandson.
I decided to try a visualization with Mike. I was wary because this is a little far out, not just for him but for me. I use visualizations to activate the mind's and the body's capacity. In this case, the body has no ability to reduce the liquids in his abdomen. I tried the following visualization. I told him to picture a tube into his abdomen which drains into the shower pan six feet away. When I asked him if it gave him some relief, he said a little. Well, I'll take that. Then he started complaining again. I asked him if he was focused on the tube coming out of his abdomen or the discomfort in his bladder. He said the bladder. Since there is no liquid in the bladder, that's a dead end. I told him to focus on the tube from his abdomen. He did and said it made him feel somewhat better. Not even I'm enough of a believer in the mind/body connection to have confidence that this will work. But, if it makes him feel better, I'm all for it.
Before I left, he suddenly looked awake and alert. He had been aware that I was upset by what Izawa had said, and he wanted to know what it was. I told him: his body either drains the liquid on its own or he has surgery. Izawa wants to wait another week. Mike said he wants the operation in 24 hours. I think he has a point. If there has been no reduction in the liquid in his abdomen for the last three weeks, what makes the doctor think another week will make any difference? Mike asked to speak to Damon. He said he didn't want anything to happen without Damon's input. Both Damon and Mike understand the Izawa is being conservative. A week from now, Mike may only be weaker and more vulnerable in a surgical procedure, and less able to fight off infection if he gets one. Mike says doing the surgery now is a no brainer. I can see his point.
Izawa says that going the surgical route is opening up Pandora's box. It will lead to more surgeries and all sorts of possible infections. He feels surgery is a last resort. His point of view frightens me. Of course, there is always a possibility that he won't get an infection. Izawa made that sound unlikely. Oh, boy.
I went upstairs to the cafeteria, warmed up my left-over short ribs, vegetables, and rice. It was delicious and so tender – and still good.
I left around 6:30 after working to convince Mike to try the visualization. Heavens knows, there is nothing objective, scientific about a religious belief. If you can pull that out of a hat, why can't you allow yourself to believe that the mind can change the way the body functions. I told him that I thought most religious beliefs were fantastic, but since I drew comfort from them, I allowed myself to believe in them. I see it as 'not allowing the left hand to know what the right hand is doing," almost literally. The right hand connects to the left brain, which is logical. The left hand connects to the right brain, which has no such expectation. I literally give permission from my left brain for my right brain to believe things my left brain could never cotton to. I monitor my right brain beliefs with my left brain to see that no harm is done to me or to anyone else. That is the pitfall of organized religion and nationalism that my parents taught me to fear after their experiences in Europe, specifically Germany, during WWI and WWII. My parents taught us to shun all forms of organized membership, even the Girl Scouts, as dangerous activities leading people to war against each other.
When I got back to the Krishna Ashram (how's that for a segue), the temple was lively with people singing and dancing, their form of worship. I went directly to the dining room, ate a little bit of dinner since I had had a substantial lunch. I joined one of the regulars, the only other person in the dining room at the time. Then two fellows I had met two days ago over dinner came in. They're both in their 20s, roommates. Jamie is half Hawaiian and half-Pilipino, and Heri is from Bulgaria. They met when Heri answered an ad on Craig's list for a roommate. He lucked out with Jamie. Jamie provided him with work and friendship. Heri is here on a student visa, and attends a community college. He is working on a degree in linguistics in his own country and speaks a number of languages including Russian, English and a few Scandinavian languages. These boys come waltzing in and Jamie presents me with a bouquet of flowers. I'm stunned. These boys aren't Hari Krishna's; they just come for the delicious food. Jamie looks a little like Tiger Woods. I will take the flowers to the hospital tomorrow, and tell Mike that I have a secret admirer who I think might be Tiger Woods. Mike's not the jealous type, so it might be a good joke.
One friend said to see if Mike was getting anti-anxiety medication. Thank you, thank you for that suggestion. When I checked, the nurse told me the prescription was for 'as needed." I have no idea who made those decisions. I don't believe he has had any since he got off the Fentanyl. I suspect it's been up to me, and I didn't know it was an option.
Another friend suggested books on tape. Mike says he can't concentrate enough to deal with much. His body sensations are flooding his mind. He can barely tolerate music. Even with that, he can't tolerate his usual favorites: the three Bs. He can only tolerate soothing music for moderate periods of time.
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