Memory--all alone in the moonlight

Thursday, August 11
Once Earl was out of surgery and in his room, my sister went home after visiting him in his room, and will come back tomorrow to take us home. She has numerous health problems herself, and doing something like this takes a lot out of her, I know. She will push herself to the edge of exhaustion to do for other people. I hope I can pay her back someday.

When I got back to the room about 1:30pm, Earl was sitting up with a food tray in front of him. There was broth, orange jello, grape juice, coffee and orange sherbet. I asked him “if he was supposed to have that” – he said “they brought it to me”. I checked the name & room number on the sheet on the tray—it was correct. He (very gingerly) tried swallowing some broth & orange jello. Within 10 minutes, he was bringing it all up again. He decided to hold off on trying any more. In the next hour or so, the resident on duty came in. He was surprised to see a food tray, as was the nurse, who came in later. The kitchen actually called while the resident was in the room & asked if we had received a tray. She wanted to know what he wanted for dinner. The resident (his name escapes me) wanted to talk to them. He advised them that “this patient is actually supposed to be N. P. O.”. Hmmmmmmm. Five minutes later, the fluorescent “N. P. O.” sign went up on his door.

Friday, August 12
After our exhausting day on Thursday, you would think I would sleep, but too many interruptions and a very uncomfortable "bed" caused me to be wide awake after about an hour nap and I was, again, wandering the halls of Rush. In those initial few days after the first surgery, I walked the halls, stopping where I could find some privacy and sat & cried. I would sneak a cup of hot water from the now-closed Smith Lounge & use tea bags I had brought from home. If I sat in one particular chair in the empty, low-lit lounge, I was hidden by a large pillar from passers-by in the hallway. I may have been on a security camera somewhere, but they may have overlooked it, due to my obvious semi-controlled hysteria.
Last night was different: I was able to get my hot water from the nurses' locked beverage & snack room; they give primary care-givers the code. I came down to the Atrium; there was the same tall, black, mentally-challenged old man cleaning the floors; there was soft, jazzy soul music coming from Au Bon Pain Cafe; there was the cutest 5 or 6 year old black boy in the Cafe wearing a visitor tag, but obviously hanging around the cafe at 12:45 am, because his mom or dad or whoever was working in the 24 hour cafe. He had a plastic milk crate & was busy inventing all sorts of games. I smiled as I saw him sit on the bench seat, raise his feet & put both feet in the suspended crate and attempt to rotate the crate, then jump up & use it as a step stool, looking at the racks of prepared baked goods. It felt good to smile.

I realized that I needed more than the approximately 75 minutes of sleep I had stolen and I went back upstairs. When I returned to the room, Earl was sleeping, having received his pain medicine at midnight and his sleeping pill at 11pm.
I looked out from Room 838N and north over the city. The flashes of white light from the El train as it made the curve, leaving the area under the hospital, were as bright as a flashbulb. The train has only four cars at that time of night; there are eight cars during morning rush hours. I can see the United Center and Malcolm X College very well from this room. I tried again to sleep and forced my mind to think of other things. All I could think of were song lyrics, ranging from Broadway shows (Cats) to dumb country songs ("Sleeping Single in a Double Bed"), and whenever I heard the El, "The Trolley Song."

Dr. Warren had told us again yesterday that the tumor would swell in the next few days, causing some pain & possibly a burning sensation in Earl’s chest. The tumor, supposedly, then dies (at least a portion of it) and turns the consistency of toothpaste, and is eliminated. We will be going back to Rush next Thursday (August 18) to have the stent put in, another overnight stay. Without it, the opening will not last more than six weeks. I think Earl does not want to try again to swallow until the stent is in; not because of the pain, but because of the fear of failure.

Sunday, August 14
Back at home, we try to keep medicines straight, and manage the pain. I will usually sleep on the couch until the sleeping pill (usually given at 11pm) wears off enough that the pain wakes him up. With his break-through pain med (Hydrocodone) having to be administered every three hours, neither one of us is getting very much sleep. Most of the time, I will then go up to bed, but always have a hard time going back to sleep. We have not again used the Kadian (a timed-release pain med that Carole at Dr. Klein’s office thought would work in the G-tube) since it was nearly impossible to get the static electricity out of those little white balls, into a syringe and into his tube, which clogged the next day. We had to unclog it with Coca-cola (regular, not diet!). The spitting and vomiting comes & goes, usually worse in the late evening. When I’m cleaning the cups, I think of my first experience, on our honeymoon when Earl was sick after our dinner on the Robert E. Lee riverboat in St. Louis. We each had a shrimp cocktail, I had lobster & steak and he had crab & steak. I had given him some of my lobster, but did not take any of his crab. The combination (or the amounts!) of all three apparently made him sick. That was my first experience with “in sickness & in health”.

As I finish writing this on Tuesday, Aug 16, I think about our 31st wedding anniversary tomorrow and regret all the times I was irritated over some dumb, little thing in our marriage. We will probably cry together and wish things could go on as they had been before, but will hope that after August 18, Earl will be able to eat and swallow and celebrate our anniversary, a little late.