Chapter 5: A Good Day

Today is a good day. Every day is a good day when we go to the hospital because it means there is another day, and another day means another chance. Today, however, is special: today we move on to the Oncology ward and toward the route Dad must take out of the hospital. It’s etched in our minds: The front door is on the fourth floor, because that’s where the treatment is, where all the newfangled gadgets and bubbles and procedures are–that’s where the specialists who will save Dad’s life work. According to Dr. Rau, his condition has slowly progressed to the point that he can start treating the Leukemia. That in itself leads to hint of optimism–even Rau’s demeanor changes, if ever so slightly–when he talks of starting the chemo.

“Once we get him upstairs, we can start treating the Leukemia, and then it’s a case of keeping him stable enough to go through it, and keep that infection he had away.”
“The first step to all that is getting him upstairs.”

Of course, he’ll never admit that the news is actually good–just progress, and maybe, just maybe, the odds are looking a little better. But we don’t need Rau to tell us that, we see it in the glow that’s beginning to show up on Dad’s cheeks and the gathering strength in his voice.

And especially the fact that he is now strong enough to yank the oxygen tube out of his nose. It’s one of the many wacky things going on–people do strange things with their backs up against the wall, and Dad is no exception. After all, if you’re going to die, you might as well do what you want to do. No matter how many times we tell him not to, he just glares balefully at us, pulls the tube out and starts picking his nose. It’s not an easy thing to do, especially when you don’t have complete motor capability with your hands. Dad’s right side is paralyzed courtesy of the stroke, but the left side is just strong enough to get the job done. Difficulty doesn’t deter him; every chance he gets, his hand slowly lifts and follows along the tube right to the source of his irritation. And though it takes a few minutes of yanking it and pulling it, soon enough the tube is out and the nurses are running down the hall.

“Mr. CHEE! How many TIMES have I told you not to pull that out? If you don’t stop, I’ll have to tie your hand to the bed rail–please don’t make me resort to that.”
It’s not just the inconvenience of having to fix it that has the nurses in a huff. There’s the danger that because of his constant yanking and pulling, the sore on his nose will become infected. To avoid that from happening, the nurses would be willing to put Dad in a body cast.

Despite the potential danger, I find it hard to blame him or find fault in his behavior. In fact, I think it’s funny. Dad’s focus is on the one thing bothering him most, and he really doesn’t care how many times the nurses have to run down the hall and yell at him. But I don’t want to see him suffer yet another indignity–it’s bad enough being stuck in a bed and totally dependent on the services of strangers for every need.

“Look at that,” I say to Carole, “All he’s been through, and his old stubbornness is coming back. That tube is a sign of it. Obviously, he must be getting strong enough to make the move to Oncology.”

“Yes, but Lynn was telling me that he might be better off to stay in the CCU.” Carole looked at me and in her dark, haunted eyes I could see distrust for anything Rau said, and fear that the stable environment we had finally reached would be compromised. We had been forced to think only in the moment–not thinking of the future, just the needs of the here and now–and now were suddenly expected to turn around and plan for the coming struggle. We were all suffering a bit from shellshock–especially Carole. To make matters worse, Rau, though one of the best in his specialty, had not made many friends in our family with his cold, gruff nature. For Carole, the last straw was when he was not around during Dad’s stroke. It wasn’t his responsibility or his specialty, but Carole felt that he should have been there nonetheless.

“Lynn said that if they move him now, it might cost him his strength, and besides, at the CCU there’s a nurse just outside his door all the time.”
“Well, I see Lynn’s point, but I’m sure Rau wanted him up there for all the machinery and everything.”
“Lynn says they can bring all that stuff down to CCU.”
“Well, it’s not in our hands, is it?” I stared hard at Carole. She knew as well as anyone that where Rau wanted him is where Rau got him, and no one–not even Lynn–could change that fact. Rau was the boss. “If they did not think he was strong enough, or that it would be best, they would not move him. Besides, they’ve been saying it for days now. When is when? Either way it’s good news because it means he’s one step closer to being out of here.”

“Besides, there’s so many viruses running around the CCU, he could easily catch something.”

With Leukemia patients, it is imperative that no virus find its way to the patient. The reason is deadly: to treat Leukemia, as with other kinds of cancer, the only way is to literally start from scratch–destroy the body’s immune system, and rebuild from scratch, leaving a person open to the slightest infection and turning the smallest virus into a killer.

It is not a good way to die. Carole, begin the ever cautious one, is still not convinced that the move is a good one. “Remember what Lynn said,” warned Carole. “He won’t get the attention he would get down here, and he needs constant tender loving care.”

Lynn. We believed everything Lynn said–without exception. She was special because she made people feel special. She was the only nurse in the critical care unit not afraid to get to know patients–even though most were on their way to the netherland. She was the closest thing to an angel of mercy we encountered through all the hours of waiting at the hospital, the closest thing to a friend and confidant. Lynn did not have a classic nurse’s look–that young, harried and motherly look–instead, her appearance better suited gruff barmaid beyond her physical prime. A ruddy-faced Australian with shoulder length brown hair thoughtlessly pulled up, she had a sturdy build and an easy, deep laugh. She smoked a pack of Camels a day, cursed like a sailor and was never, ever afraid to lay it on the line for patient and family.

When she did, it was not without caring about feelings and emotions. She smoothed over so much of the bad news with that laugh and a penchant for telling tall tales. Lynn could induce the sickest, most depressed patient into laughter–if they were able to–and if not, she would at least make them smile, despite the tubes and water pans and other humbling aspects of hospital life. That was her mission–make the humbling experience of terminal illnesses a little more respectful. So Lynn would say what was on her mind, did what she pleased and threw caution into the wind much too often to suit her superiors. She got away with it because she was better than anyone else at handling the hopeless patients in the CCU.

“I think the hospital rules about guests should not apply to the critical care unit,” she told me. “Too many people are dyin’ or thinkin’ that they’re already dead. All they need is to see the ones they love. How could we be so unfeeling as to keep ‘em from it? It’s not right. I remember–gosh, it must have been about five or six months ago. Brian, that’s a lifetime in the critical care unit. There was this man and he was dying–everyone knew it, and there was nothing anyone could do about it.

“He had these two sons, and they were just young lads, too young to go into the CCU, per the daft hospital rules. But I let ‘em, anyway, and told the head nurse to never mind about it. Well, they sat up on the bed and had a good cry together for a while, then they left.

“He died a very happy man that night.”

Lynn had a million stories. She worked in anecdotes, the type of person who doesn’t talk as much as tell stories, the kind who must always make a point and must always do so with style and flair. Each of her stories were touching; most were sad and all were directly related to one simple point: people die, and a nurse’s job was to let them die with dignity. If they are to survive, let them survive with their dignity and spirit intact. Of all stories and all the people she had helped over the years, the one story that brought that message home most effectively was her own–Lynn had survived her own personal battle cancer, and as a result she looked at her work in the CCU from a different perspective: she understood what many of her patients were going through–and how to help them through it. She was determined to help Dad survive. He would only do what he wanted–unless Lynn asked him to do something else, then he’d do it immediately. He preferred her company to that of his family because she was content to simply sit there and do her work, without having to ask him a million questions.

And she told him it was okay to cry.
“It’s all right for your Dad to be scared, Brian,” she told me one night. “He’s dying, he has every right to be scared. Let him face it and accept the fact that he will probably not make it. He has to accept it so he can beat it.”

“I don’t know if I can face it.”
“You don’t have a choice–your family doesn’t have a choice. Each and every one of you have to face the facts. There is no choice, so you better start facing it now. You’ll only be able help him face the facts if he knows you can.”

Lynn was not afraid of the cancer–she had beaten it once already, and that was an inspiration. Dad knew we were all so afraid, and what he needed was a person who understood and still was not afraid. He wanted to be with someone who would look at him and say Rich, you might die pretty soon. It’s okay to be afraid.

When I heard her say it I was shocked. She was at the edge of the bed, holding his hand. Dad was sitting up and listening to her with intense attention. “I was just talking to your Dad about the cancer, and what to expect,” Lynn said. Your Dad’s going up to Oncology this afternoon, and I thought that I would talk to him a little about my experience with cancer.” She talked about the chemotherapy, all the while holding Dad’s hand and looking straight into his eyes. She talked about the pain– “be ready, love, because it rips your insides out”–and she told him about the masks and the vomit and the atrophy and all the horrible things he would encounter two floors up. And she told him that he could do it, looking straight into his eyes so he knew she was not lying. “All you’ve got to do is put up with it for a little while, and it will all be over,” she said. She looked at him and for a long, long minute said not a word. Lynn just sat on the edge of the bed and looked into Dad’s eyes, sharing with him secrets between cancer patients and building a bond he could hold onto while his body fought the poison in his blood.

“I won’t be able to take care of him after he goes up, Brian, but if you need me, just come down. Just remember that it’s all right to cry, it’s okay to be afraid. Be honest about it and you’ll be okay. Don’t hide anything from him. He knows what’s going on, so don’t treat him as if he’s a bloody idiot. I know he can beat it. He’s got a great family who will help him get through this.”

The time had come to find out if Dad was going to beat the disease, or if we were just hoping for a hopeless miracle. As they wheeled him out of the CCU, it almost felt as though we were leaving our home for the danger and hope of the unknown.

We were on our way–whether we liked it or not.

 

Chapter 6