Japanese beetles and greener grass
The only reason, of course, for the stent procedure was so that Earl could eat. Period. He said he wanted to enjoy the time he has left and knew this was his only option. The doctor made it sound so easy, so successful. You all know the old saying, “The grass is always greener on the other side of the fence.”
Earl was still, however, thinking of having another chemo treatment; I had told him this would have to be his decision. I secretly thought the cons outweighed the pros, including having the stent dislodged during violent post-chemo vomiting, but kept my thoughts to myself. So much has happened since last Thursday; so many things have been clogging my brain – it has been unbelievably confusing and hectic. I will try to sort out and document our days.
Pain & Nausea Management
After returning home last Friday (August 19) from the stent procedure, Earl did not want to try eating (by mouth) and we were mostly just trying to manage the pain. With the Hydrocodone being needed about every three hours, not only were we not getting enough sleep, but he was at his daily maximum dose of Tylenol. We had already increased the Duragesic patch to 75 by cutting the backing on a 50 and exposing half of another patch. As of Friday, I am on the couch whenever I sleep.
On Saturday, Debra, our VNA nurse, came and suggested that Earl get on a morphine pump which would deliver a steady dose though a line in his port. Unfortunately, due to various circumstances, we were unable to get this hooked up until Wednesday, August 24. (more explained on this later). She also suggested a different nausea med, Phenergan (promethazine) and she inserted a Sub-Q button on his upper right arm after talking with Dr. DeJoan (he is Dr. Gupta’s associate, our family doctor that had performed the first scope test with the biopsy back in May). Debra pre-filled several small syringes for me, and I had to administer the Phenergan every six hours into a small, waxy plug at the end of a little line attached to the Sub-Q button, which was taped down. It took about 5 minutes to administer each dose, since I had to put just .1 cc in and then wait a minute, until it got up to .5 cc. I was so nervous the first time that I forgot to use the alcohol wipe on the plug, but Debra told me the next day that was OK.
Eating & Living
Last week, before the stent procedure, I had bought two pounds of coffee at Dunkin’ Donuts (1 pound of de-caf and 1 pound of regular beans) and told myself I would not grind it until he could drink it. On Saturday, Earl finally had a couple of swallows of coffee. I guess I was waiting for a reaction similar to the dog (what was his name?) in the old cartoon that practically made love to his dog bone, and then shot up into the air and floated down in ecstasy. But it was not like that. I don’t know if it is the drugs or the cancer, but his taste buds are apparently not what they were 2 or 3 weeks ago, and he never even smiled. Later on, he had some chicken broth with maybe 2 bites of soft pasta in it and a few spoonfuls of home-made tapioca pudding. When I suggested something else that he could eat, he became slightly agitated and said he was just “easing” into this (eating by mouth) and to please let him do it at his own pace. The stent is only about the size of an average index finger, and of course, does not stretch like a normal esophagus, so he is limited on what he can eat, but there are many things he could eat if he feels like it. Dr. Warren had sent his resident in before we left the hospital and said he could eat pasta, Sloppy Joe, puddings, fish, etc., probably not chicken, raw vegetables and not steak. He never told us that Earl would be so nauseated (whether from the cancer being pushed down by the stent, or IF there is cancer in his stomach or from the drugs, that he wouldn’t want to eat.
Sunday seemed to start off good, with Earl feeling better. We went on the shady front porch (it was a gorgeous day!) and I got out the clippers and gave him a hair-cut. He used to have such thick, wavy (& wiry) hair; I used to say his head on my lap felt like a Brillo pad. Since the chemo, it is much thinner and it seems to have much more gray than before the cancer. With him losing so much hair, at least now it is shorter and not as much a mess. I can’t kiss his head without coming back with my lips full of hair. After the hair-cut, I helped him with a bath and hair wash, and then made breakfast. For the entire day, he had about half of a soft poached egg, a few bites of mostaciolli, less than a quarter cup of applesauce and about a half cup of cream of tomato soup, with only one can of Two Cal. Monday was even less “regular” food by mouth, but at least he took in three cans of supplement; Tuesday, his nausea was back and he took nothing by mouth and less than 2 cans of supplement. By Wednesday, I received the Nutren 2.0 (500 calories) that I had ordered on the internet on Sunday when Earl told me that he thought the Nutren he received in the hospital digested better than the Two Cal. I wish I would have know about Nutren before; I thought I had been advised (by the VNA dietician) of the highest calorie supplement per ounce that was obtainable. Also, Nutren is made by Nestle’, which, to me, is more appetizing than Ross/Abbott Laboratories, who makes Two Cal. Also on Wednesday, Earl decided he wanted to try some Cream of Wheat and toast. One bite of Cream of Wheat seemed to go down fine, but apparently the baby-bite of toast did not go down well, so he decided not to eat any further Cream of Wheat, nor did he want to try anything else the rest of the day. As I write this on Thursday, he has not wanted to eat anything today (except supplement in Godzilla). It has only been 3 ½ weeks since we sat in Dr. Warren’s office and listened to him describe the PDT and I remember Earl’s eager anticipation of performing the simple act of eating.
I’m sorry if I have been writing in too much detail—I guess I need to keep it all straight in my head to justify the “main event” of the week.
The Decision
A very important development has also happened since returning home from Rush on Friday. Both Dr. DeJoan’s office and Debra had mentioned this to me before; I just didn’t think it was time, and I did not want to make the decision myself, especially since Earl had still been thinking of having more chemo.
On Saturday, Debra talked to Earl and me about going into the VNA Hospice program. She explained that there are many advantages but we could discontinue the program at any time if we wanted. The main goal of hospice is, of course, palliative and comfort measures and this meant that no further treatments (chemo or radiation) or tests (x-rays, CT scans, etc.) would be performed. I said that it would have to be up to Earl, and he said he would think about it. Monday was not a good day—at one point, I tried to get him up to eat something and he said to leave him alone, that he was trying to talk to God and he had not yet received an answer.
By late Monday afternoon, he said that he can tell when his body is starting to shut down; he had decided he did not want to do anymore chemo and that I should call Debra. Many factors went in to this decision; please don’t think that any of us took it lightly.
Debra came over with forms on Tuesday, August 23, for the admit. Earl will still be at home, and I will still be his primary caregiver; we will have an additional nurse (Avonne), and medicines and all supplies (including a different bed) will be delivered to us. I think the futile efforts on Saturday and Sunday in trying to call Aetna, the doctor’s office, and Walgreens Home Health Care to get the morphine pump delivered played a small part in the Decision, but I’m sure it is a combination of many things. I know that Earl was on a roller coaster of pain and just did not want to do it anymore. Debra came on Wednesday to “install” the morphine pump and remove the Sub-Q button, which by this time was causing pain to Earl’s right shoulder. Apparently, the Phenergan is not supposed to be administered Sub-Q and, as of Thursday night, his arm is still red and slightly sore. He is now on a different medicine for the nausea. We shall see if it works.
Wednesday evening is pretty much a blur—we discussed things that many couples do not get a chance to discuss before one of them is suddenly taken away, but my stomach is still in knots and I am cried-out. Thursday, Walgreens came to take the old bed; American Medical came & delivered the new one; Avonne, our certified hospice nurse came over, as well as the hospice social worker, Lu. Earl was exhausted and slept most of the afternoon and evening, giving Godzilla only 4 ounces and later drinking about 2 ounces of the Nutren.
Friday, August 26, 2005, 4:55 am
In a horrible way, a weight was lifted from my shoulders after The Decision. I know he will receive more personalized intensive care and will not have the strain of car trips, or doctor visits or procedures. If there was a 1% chance that he would be cured by any of those measures, I would encourage him all the way, but there is not. It hurts me so much to see him in pain, or vomiting up what was just put in his stomach 15 minutes earlier, or how much his general stamina and strength has diminished. If anyone reading this has had even a bad case of the flu for a week and you thought you were dying, multiply it 100 times for 3 months and ask yourself if you would not only want to continue being that sick, but to know any further measures to extend that illness would make you even sicker, would you do it? Especially if you knew you were not going to get any better? I doubt it.
Sometimes the neighbor’s green grass has grubs eating at the roots and the “greener grass on the other side” is not what you thought it would be.