See-saw

Long before video games, IM, and movies-on-demand kept kids busy in the summer, there was The Playground. I loved the monkey bars & can remember hanging upside-down for several minutes and actually thinking it was fun. At school, back when little girls wore dresses every day (except in the winter when you were permitted to wear “leggings”), I envied the boys because they did not have to worry about their underpants showing. Even though I have always been afraid of heights, I loved the swings and the feeling of flying. The closest playground to my house on Maryland Street belonged to St. Joseph’s (The Worker) Catholic Church. There was a huge metal fence around the entire area, with gates that were usually chained & locked, but the long chain from post to gate left a gap just big enough for us to squeeze through. I always enjoyed the see-saw on the playground. The feeling of weightlessness for a split second when you see your partner at their lowest point was somehow empowering.

I have not felt empowered this week, seeing my partner for the last 30 years at some of his lowest points to date. My heart aches every time I hear him trying to bring up the mucus that normally secretes and goes down our throats, through our esophagus and into the stomach. He has taken to eating ice chips; they refresh his mouth and say they help bring up the foul-smelling mucus.
Tuesday started badly, with Earl commenting on a bad headache. He took his blood pressure twice, with a reading of 154/110 the 2nd time. I called Debra, asking if I could dissolve the Lotrel capsule contents in water & inject, or is this a time-release medicine or what. She advised that we could do that and to call her back if there was another problem. I told her Earl had an appointment with Dr. Gupta at 10:15, so they would check his B.P. again.
Earl was still not feeling well when we arrived at the doctor’s office, and the 35 minute wait for the exam room did not help matters. He was lying on his right side in a cold sweat while the nurse fumbled for a blood pressure cuff that would fit his arm. At least his blood pressure was normal now.
When Dr. Gupta came in, one of the first things he did was don some gloves & then peel off the Steri-strips that were put on his belly incision after the operation, saying that if they had not fallen off after 2 weeks, it is time to remove them. We discussed various other matters, including pain management. Dr. Gupta prescribed the same Fentanyl patch that Earl had received in the hospital. This is stuck directly on the skin, and delivers a measured amount of medicine for 72 hours. At the suggestion of the VNA dietician, he also prescribed Two Cal, a higher calorie (475) supplement that you cannot just buy (like Boost or Ensure) at Wal-Mart, and a cream for the G-tube site.
The Two Cal had to be ordered (Walgreens even called 2 other pharmacies—no one had it), but we applied the pain patch that evening. It seemed to be working fine and I was relived that his pain would be better controlled. Selfishly, I felt a slight burden lifted, as the every-six-hour Hydrocodone pill (which had to be crushed, dissolved and put in the G-tube) had left both of us with less than six hours sleep each night. By Thursday morning, however, Earl woke me up about 5:00 am, was very agitated and said the Fentanyl patch was making him nauseous and giving him nightmares about someone trying to strangle him in the backseat of a Buick. (Go ahead—it seems funny to me too, now, but it wasn’t then!) I took the patch off of him and he went back to sleep. A couple hours later, he started back on the Hydrocodone.
After making sure that someone would be able to come over to help out with Earl’s meals, I went back to work on Wednesday. (All of my girlfriends at work were happy to see me and my boss, Mike Pampalone, Jr., assured me that I could take whatever time I needed and to let them know if we needed anything. Believe me, that is one less worry off my mind.) Katie was babysitting all day & Jon had to go to work at 1:45, so my sister, Sandy, came over in the afternoon. The kids helped out on Thursday & Friday, so I could go to work. I hated to leave Earl, but he actually told me he thought it would be good for me to go back to work and that he needed some time to himself, anyway.

Independence Day?
It is now 3:37 am on Monday, July 4. After Earl woke me at 2 am saying he needed his pain medicine, I tossed for over an hour then decided to get up & work on the blog. I apologize for not posting more frequently lately. I had a lot of time in the hospital, but after getting home, there is always something to do.

Have you ever thought how food would “taste” if it went right to your stomach and bypassed your mouth? Earl says he has those sensations, as he did when he wanted 7-up a couple days ago. I was worried about the bubbles, but he insisted it would be OK. He loved the sensation, saying it “tasted” great. Unfortunately, it apparently did not sit well with him, as something (also possibly the grape juice) gave him distress for several hours afterwards. He is resigned now to sticking to apple juice, the only juice that does not seem to bother him. I worry about his calories; some days he has less than 1,000. One day he had just over 1,700, but averages around 1,200 to 1,400. Even with the Two Cal, he insists he can only “eat” so much. If we could get him up to 4 cans, (1,900 calories) he would not be losing weight as quickly as he is. He has to beef up, as he will need all the weight he can get when he starts treatments.

Wednesday, July 6, is his follow-up appointment with Dr. Warren, the surgeon and an appointment with the radiation oncologist at Rush, Dr. Abrams. Friday, the 8th, is the appointment with the chemo oncologist, Dr. Kline in Porter (Chesterton), IN. She was highly recommended to us, and as the chemo oncologist, Dr. Villaflor at Rush told us, the drugs are the same anywhere, so why make the trip to Chicago when he can get it closer to home. We will have to evaluate what all the doctors say and decide on a plan of action. Earl has said that when he can eat again, he wants to go to Tiebels in Schererville for their boned & buttered lake perch. My wonderful sister said she would buy his dinner when I told her what he had said. I hope Earl’s positive attitude continues through the treatments. As I have said before, he has been very positive all of his life, but this will be his biggest challenge. After being sick a couple days this week, I feel his resolve already slipping. Any of you that have had cancer or some other serious condition can relate, I’m sure. When there is a constant reminder of the situation, in this case, “Godzilla the G-tube” or when the pain returns, or when he has “a meal”, I believe it can shake the resolve of any person, no matter how strong they may be. He tires more easily, does not want to go anywhere and barely showers or gets dressed. I’m sure that depression is starting to creep in and wonder if a medication would help. I keep thinking of that Best Buy commercial with the Pinocchio-like little being and the strings being cut so he can “go wireless” and be independent.
This will not be “Independence Day” for my husband.

Thank you again to everyone for your cards and e-mails. I have put them all in a scrapbook for Earl to read to remind him of how many people care about him and are praying for him.