After the procession of doctors that came to consult on Dad’s case on the afternoon of Christmas Day, Dad saw me crying. “What’s wrong?” he asked me, with alarm in his voice.
“I’m just trying to figure out what to do to get you better, Dad,” I told him.
“Have you come up with anything?” he said hopefully. I sat down on the edge of his bed, looked him in the eye and said, “I think you have to start eating, Dad. I think you haven’t been taking in enough calories to get stronger. I think you need to take control of your recovery by finding a way to make yourself eat.”
The room was quiet for a minute as Dad considered what I had said, and then he proclaimed, “OK, then. It’s a deal. I promise; I will start eating more, and then after that I can go home, right?”
“That’s right, Dad. It’s a deal.” Through tears that I hoped he didn't see, I told him goodnight, and then my sister Jennifer took over. I was planning to be back early in the morning so that I could catch the doctors on their morning rounds.
Jennifer reported that Dad was chatty overnight. Despite saying many times that he was very tired, as usual he did not sleep at all. He said he realized that he was confused and that he didn’t want to tell the doctors because he thought then they wouldn’t let him go home. He dutifully ate some graham crackers and peanut butter and then some ice cream; it was plain to see that the effort he had to exert just to chew was utterly exhausting to him.
Halfway through the night, my sister Nancy took a turn with Dad. “He is trying so hard to eat,” she wrote in the Notebook. Dad told Nancy that eariier that night he'd been at the hospital all alone. Of course, she told him that he hadn’t been by himself, but it still made us so sad to think that he didn’t realize we'd been right with him the whole time. “I am very concerned about how sick I still feel,” he said. “I don’t feel like I’m getting any worse, but I’m definitely not any better, either.” He told Nancy that he couldn’t wait to see how proud of him I was when I found out how he had eaten during the night, a comment which, when I look back at it now, almost breaks my heart. I can only hope that he knew that I already was as proud of him as I could possibly have been for so, so many reasons and that he didn’t have to strike a deal or hold up what he thought was his end of the bargain for me to be proud.
I got back to the hospital just as the sun was coming up, and right away Dad told me to write down a list of things that he wanted to remember to ask the doctor, most of which centered around the fact that he wanted to go home. He said he knew that he needed to continue to “eat better,” and he listed several foods that he said he would try to eat that day, including toast and grits, a Diet Coke and a grilled cheese sandwich from Sonic, and a hamburger with mustard. “No cheese and no mayo on the hamburger,” he said. “Those have TONS of calories.”
“But Dad, we’re really wanting extra calories for you now,” I reminded him.
“Well, I guess I’ll have cheese on there, but I really don’t think it’ll be good with the mayo,” he said adamantly.
We got another visit from the consulting neurologist mid-morning that day; the doctor took about five minutes to do his “neuro checks” and then declared that Dad had “gotten better” since he’d seen him the day before. (“Better in that he is slightly less confused, but not better in terms of pain, eating, or sleeping, plus now Dad is really starting to realize just how sick he is,” I wrote in the Notebook after the guy left.)
Shortly after that, the stand-in oncologist reappeared and informed us that he was “pleased with the progress made over the last 24 hours.” He said Dad should not be given pain medication for problems with sleeping. He would allow Dad to take Benedryl for sleep and anxiety problems, but that was it. He said Dad could probably be moved out of the ICU in the next day or two but that he felt Dad needed to "stay put for the time being" because he was still at risk of choking and because of the concerns about Dad’s heart. Um, his heart??? The last we’d heard about the PVC’s on the heart monitor had been the day before from the cardiologist, who had seemed confident that there weren’t any true heart-related problems going on. “I’ll have his blood counts rechecked today, too,” the guy said casually, still talking as if Dad wasn’t there and/or couldn’t understand what was being said, “but I expect to see improvement on those numbers too.” And with that, he was off.
Shortly after that, the blood tech came in, and, as had happened a few times over the past few days, she had trouble finding a vein. The nurse had informed us that long-term steroid use "often makes the veins brittle and causes them to roll, both of which makes it hard to get a needle inserted." Through the multiple needle sticks, Dad grimaced but didn’t complain, and eventually the technician had partial success. She was able to obtain one of the two vials needed for the labwork. Dad winced as she put band-aids over the multiple places that she’d poked on Dad’s hand and arm; it was the ripping off of the tape and bandages that he hated the most, yet another thing for him to be anxious about and to cause him pain.
About an hour later, an x-ray tech brought in a portable x-ray machine to take x-rays of Dad’s chest. Jennifer and Peter helped the technician position Dad so that the films could be taken, and they noted in the Notebook that Dad’s rib cage was startlingly apparent. Despite all of Dad’s talk about what he was planning to eat that day, he continued to say he was “zero hungry” and even "I don't think I can stomach anything.”
"Sorry," he kept saying, with a guilty look on his face. And despite the doctors’ positivity about his improvement, we didn’t see it. We saw a man who was exhausted, frustrated, worried, and still somewhat confused, a man who was telling us that he just wanted to go home.
"Sorry," he kept saying, with a guilty look on his face. And despite the doctors’ positivity about his improvement, we didn’t see it. We saw a man who was exhausted, frustrated, worried, and still somewhat confused, a man who was telling us that he just wanted to go home.
It was at this point that the idea of supplemental feeding was brought up. As part of the steps we were discussing, this is what I wrote in the Notebook …
I did not want supplemental feeding to be started. For the first time in Dad's treatment, there was disparity amongst us – really, at least from my perspective, between everyone else in the family and me. That was its’ own special kind of hell.
I knew that each of us wanted more than anything to figure out some way to help Dad, and I realized that having a consensus was crucial. It wasn’t that I disagreed with the fact that Dad somehow needed to get nutrition. I just wanted SO MUCH for it to be in a typical way, through eating on his own. I knew him as a super-determined man, a person who was more motivated and more physically fit than anyone else I knew, and I wanted him to be able to use his WILL and his STRENGTH to pull through this, even though I could plainly see that wasn’t possible. I was horrified by the visual in my head of him having another procedure and of how helpless he was in the bed. I didn’t trust anyone on the medical team, and I felt like even they weren’t on the same page about what the best thing to do to help Dad was. I knew that inserting a PICC line would be risky and scary and painful for Dad, and so NOT what my strong, proud father would have wanted. Hell, it’s not what any of us wanted for him, but we wanted him to get better more than we didn’t want him to have another procedure.
I see now that we were at different stages in our anticipatory grief, which, especially coupled with the worry and fear attached to the uncertainty of Dad’s condition and about our future as a family, was threatening in a way that even the cancer hadn’t been. I saw the big picture, the goal of somehow stabilizing Dad, and I knew we had to get there in any way that we could; I just couldn’t get past the terrible gnawing in my gut that I couldn’t quite identify, and I couldn’t shake the feeling that Dad was slipping away or even that quite possibly he was losing his will to fight.
A PICC line, by definition and per its acronym, is a peripherally inserted central catheter. It's like a large IV that goes in through the upper arm and is fed to the vena cava near the heart. From the way that I remember it, the idea of the PICC line was first brought up by Dad’s ICU nurse, who, like everyone else around, was concerned about his nutritional status. The nurse told us that an NG tube is usually the better option with which to start supplemental feeding but that, since Dad couldn’t even keep from pulling out the oxygen tube in his nose, she felt that a PICC line would be better.
As well, when considering an NG tube (which would go in his nose, down his throat, to his stomach), we also had significant concern about Dad’s medical history, which involved a botched sinus surgery by an ENT in the 1980’s that resulted in a orbital bone (under his eye) accidentally being scraped out during the procedure. The concern was that, instead of following the intended route, the NG tube would coil in the extra space in Dad's sinus. [While I was in college, he’d had reconstructive surgery by another surgeon to hold his eye in its socket because of that screw-up by the first ENT, which sucked enough already, but I never dreamed that the malpractice from the first surgery would cause Dad more pain, more risk, and arguably a more rapid decline at the end of his life this many years later. Remind me to find that ENT and punch him straight in the &^%@ one day.]
Thinking back to the decision of whether or not supplemental feeding support should be provided for Dad and, if so, how it should be done, it seemed like we were getting multiple opinions from many different sources. I remember standing just outside the glass wall of Dad’s room in the ICU and, despite the fact that none of the doctors on the case had ever even broached the subject, listening as his nurse, another nurse, and the PICC-line nurse talked about how they thought he should get the procedure done. “With a PICC line, he’ll be able to get nutrition and medications as well as blood tests done without additional sticks,” one of them offered. Dad’s nurse said that she could call and get the oncologist to order the procedure if we wanted. I wanted to scream, “NO WE DON’T WANT IT; WE DON’T WANT ANY OF THIS! WE WANT HIM TO BE WELL!” Why was this being discussed by the nursing staff and not the doctors that were involved? Why was this decision being put to us, or, specifically, to my mom, as if it was a now-or-never proposal? Why the hard-sell, all of a sudden? The room was spinning. I didn’t know the answer to those questions, but I didn’t know how else we were going to get Dad better. All I could do was pace the floor, cry, and hope that signing off on this procedure would be the right choice for Dad.
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