While Dad was having the emergency CT scan, the ICU nurse told my mom, my sisters, and me that we would have to observe Neutropenic Precautions, meaning we had to scrub, gown, and mask to enter Dad’s room. OK, I thought, we can do that. And then she dropped the bomb: she pointed to a sign on the wall that listed visiting hours in the ICU and the one-visitor-at-a-time rule. Feeling panic rise up in my throat, I told her that Dad was unable even to use the call button to ask for help and that, unlike other patients, he rarely slept. I told her that he didn't just want us to be there with him, he needed us there, and we needed to be there. She said the only time they will make exceptions to the rules is when a doctor had written orders to that effect. After a little more pleading by us, she called and made our case to the stand-in oncologist Dr. M, who agreed to write an order to allow us to stay with Dad around the clock, with up to two of us in the room at a time.
When they brought Dad back from CT, the nurse said he was not allowed to eat or drink anything, but she could not give us a reason. My sister eventually argued her down on the issue, but in the meantime Dad was cold, thirsty, anxious, and exhausted. A little while later, Dad started to complain of severe stomach and chest pain, and testing for heart-related problems was kicked into high gear. WHAT IS GOING ON? we wondered, but we tried our best to keep the fear from our faces as we assured Dad that the doctor was going to figure out what to do to make him feel better soon. After some additional blood work, Dad was given IV pain medicine, which knocked him out for a couple of hours, during which time my mom, my sisters, and I huddled to revise the schedule so that each of us could be there for as much time as possible around the clock, with at least two of us there at all times. We were launching into survival mode, for Dad and in some ways for ourselves as well.
The unit was freezing cold, and when we asked if the temperature in at least our room could be adjusted we were told no. We kept Dad bundled with extra blankets, and we kept our coats on, at times even wearing gloves and hats in the room too.
To add to our problems and concerns, snow was really coming down outside, and the prediction was for snow and ice to accumulate even more overnight. Our husbands and children were traveling from out of town, and we were all driving between the hospital and my parents’ house in shifts, at all hours of the day and night. In addition, we had been so involved with all that was going on at the hospital that none of us had had a chance to get to a grocery store to buy food to have, and, now that night had fallen on Christmas Eve, stores and restaurants were all closed until the day after Christmas. We were so consumed with the precariousness of the balance of caring for Dad and taking care of everything else that had to be done that we were overwhelmed by logistics, and the icy roads and that lack of sleep and stress that we were all experiencing weren’t helping any. We ate dinner that night out of the vending machine in the ICU waiting room, taking turns eating and sitting with Dad, so full of worry and sadness that we didn't even acknowledge the crappiness of our Christmas Eve meal.
At the nursing shift change on Christmas Eve, Dad’s new nurse came into his room and introduced herself. Her name was an unusual one, and, because she thought Dad was asleep, she spoke to us very quietly. A few minutes after she left the room, Dad opened his eyes and said, “Did she just say her name is Worm?” We told him no and commented that that would be a really strange thing for someone to have as a name. Dad, as usual, had a different perspective, and he scolded us by saying, “She can’t help what her parents happened to name her if her name is Worm, and she seems nice.” Point taken.
Like all of the nurses we encountered on the ICU that weekend, “Worm” was mostly nice and usually efficient but very business-like and not what you would call "warm." At times, it seemed like the nurses on the unit wished that Dad would just go to sleep and that those of us who were extras on the set would exit, stage left. Like we had the first time Dad was in the ICU around the time of his surgery, we tried to fly low and make nice with the nursing staff, but we weren’t about to have Dad take a hit just for the sake of niceness. Several times, we had to remind the nursing staff about certain medications that Dad was supposed to be getting on a specific schedule, including the fourth in a series of five shots of the Neupogen that was ordered to be boost his immune system. Because the temperature in the room was so cold, we had to ask for extra blankets fairly often. We were the only family members on the unit the majority of the time, and, time and time again, we commented amongst ourselves that if family members weren’t allowed to be there as much as we were with a patient like Dad, in the best case scenario, that person would be neglected at times, and, in the worst case scenario, the patient would be, well, a lot worse off.
Dad was very uncomfortable and anxious and at least somewhat disoriented during this time. As had been going on throughout his hospitalization, it seemed like every half hour or so a nurse or technician had to poke or prod him or – the worst for him – tear off a heart monitor lead, medical tape, or a band-aid. Even just having someone move him to reposition him in the bed, to put a bedpan under him, or to put a thermometer underneath his arm was extremely painful for Dad, and having hair ripped off along with the adhesive was like medieval torture. He started cringing and even startling whenever someone entered the room in anticipation of the pain any procedure or action might bring. His stomach continued to hurt, and an anti-ulcer medication was added to the list of things being administered. And, although we had been told not to adjust Dad’s diet with regard to the blood sugar issue many times by many physicians since Dad had been started on the mega-doses of steroids, suddenly the hospital starting sending diabetic trays for him, some of which were “liquid only.” Dad was totally disinterested in food of any kind; we fed him ice chips to keep his throat, mouth, and lips moist. As the hours ticked by into the wee hours of the night, Dad’s frustration and anxiety levels grew; he was very annoyed if anyone made noise or talked around him, and so we started texting each other from one side of his bed to the other to communicate when necessary in the dark, cold room.
Christmas morning arrived with Dad in exactly the same state as the previous day, if not somewhat worse with regard to pain and despair. The Infectious Disease doctor came by to report that Dad’s blood work looked “normal” and that she wasn’t sure why his mental status and pain levels weren’t improving. She wrote an order to discontinue the Fentanyl patch that Dad had for pain in hopes that his confusion would clear up. Dad alternated between being discouraged and annoyed and kept saying things like, “Why can’t these people just go on?” and “I can’t do anything – I can’t even breathe right!” It was heartbreaking; it made us want to protect and help him even more, but we had no idea how to do that.
Around noon that day, Dad reported that his stomach, chest, and whole body hurt really badly. “I’m really worried that I’m not going to make it!" he said. We hit the call light button, and the nurse came in and gave him pain medicine, after which he didn’t sleep but he told us his pain wasn’t as bad.
A few minutes later, Dr. M came into the room. “I’ve got no news for you,” he said right off the bat. “I’m recommending a feeding tube for nutrition for him. It’s my guess that he’s got something else going on in the head,” and then he pointed at his own head, as if to emphasize or to clarify his point.
Wait a damn minute, I thought. This isn’t some breezy interaction in an elevator! And HOW DARE you speak about a patient – MY DAD – like he isn’t RIGHT THERE or like he DOESN’T UNDERSTAND what you’re saying about him. By the time I had processed this, though, the guy had turned on his heel and stepped out of the room. I looked at my mom and said, “I’ll be right back.”
What happened next is one of my clearest memories from the whole time we were in the hospital, maybe even from the whole time Dad was sick, and MAYBE EVEN from over the course of my whole life.
Dr. M was at the nurses' station, writing in Dad’s chart. “I need to talk to you about my father,” I told him, using every bit of restraint I could muster.
“Oh?” he said, looking up from the chart.
“We need some answers and we need some kind of action, some sort of plan. Why is he not getting better, and what do you intend to do to help him?”
“Look,” he replied, “It’s Christmas Day.” AS IF THAT WAS NEWS TO ME, AS IF THAT EXPLAINED ANYTHING, AS IF THAT MADE A DIFFERENCE TO MY DAD OR TO MY FAMILY. I came unglued.
“We are aware of that,” I told him, with tears of fury in my eyes, “but it’s not Christmas to my dad, or to us! He is miserable, scared, and so sick. I don’t care what day it is – DO SOMETHING! It’s YOUR responsibility to do something about it and to take care of him, regardless of what day it is.”
“I understand,” he said, in what could only have been seen as a very condescending tone.
“No, you don’t!” I yelled. “You can’t understand – it’s not your dad in there suffering while no one does anything to help him!”
“Ma’am, I do understand,” he said, “because I have been through cancer myself. I had prostate cancer several years ago.”
AS IF, I thought! “My dad has brain cancer!” I screamed.
He took a step back, and for a moment the unit was completely silent. I could hear the clock on the wall ticking, and I could feel the eyes of every person in the area on me, but of course I didn’t care. “I am aware of his diagnosis, Ma’am,” he said, “but I’m not sure you understand the prognosis.”
“I am very well aware of the prognosis and the facts,” I yelled as I clenched and unclenched my fists. “What I don’t understand is why you think it’s ok to dismiss him as if there’s no hope, as if he doesn’t matter.”
After several beats of silence, he came back with “Ma'am, he is receiving adequate care. I know how you feel, but sometimes patients just don’t get better.”
Oh, no, he didn’t. Quietly, but with great conviction, I told that @&$#% that “adequate care” was not good enough for my dad, that this was not the end of the road for him, that my dad was not going out this way, and that it was his responsibility as a doctor and as a human being to DO SOMETHING to help him.
“What exactly do you want me to do?” he asked me.
What I wanted to do was to punch him in the face, but instead I told him, “I want you to figure out what’s going on with my dad. I want second opinions and consults from every specialty area – cardiology, neurology, neurosurgery, and anybody else that you can think of. TODAY.”
“It might be hard to get anybody to come in to consult on Christmas Day,” he said, still full of shit waffling.
“Are you saying that there is no one at all in these areas on call today on staff at this hospital?” I demanded.
Finally out of arguments, he acquiesced: he didn’t answer, but he averted his eyes and furiously started scribbling orders in the chart.
I knew I had offended him, and I am well aware of the Be-nice-to-the-waiter-so-he-doesn’t-spit-in-your-drink Rule, but this was literally a matter of life and death. Christmas or not, my dad, like every patient, deserved the best care available, and I was convinced there were other things that could be done to help him. Completely entrenched in my role of Daughtering, I was taking no prisoners, and one arrogant doctor was no match for me. With that Smackdown out of the way, things started to move along a little more smoothly during the second half of our tumultuous Christmas Day.
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