Night Reflections

by Robert Thomas Winn

  Nancy had been feeling increasingly tired the past two days, and her temperature has been rising today. I was happy to hear that someone besides me would be checking her—and since it was Adam, the nurse practitioner on call for bone marrow transplant patients, she would at least bypass the emergency room.

  (For those of you who don’t know, transplant patients go straight to the bone marrow outpatient clinic conveniently located on the hospital’s fifth floor. The clinic is only a few steps away from the specialized bone marrow transplant hospital rooms, just in case.)

  “Winnie, I’m fine. I want you and Jaret to go to Woodland as planned. Jayna can take me to the hospital. Jaret’s looking forward to being at the house and my plants need watering. Besides, I need some warm clothes for going outside. I want that sweater with the Santa Claus on it. You can always come back down if this is more than a minor problem.”

  In Nancy’s typical style, she put her plants and Jaret before any concerns of her own. An hour after our Woodland arrival, she did the same thing again.

  “My fever is higher than we thought, Winnie. So Adam wants me to stay in the hospital a few days. He said my ‘army needs a few weapons’ it doesn’t yet have.”

  I paused for a long moment and Nancy immediately responded, “Winnie, Winnie. Please don’t get all emotional on me. I’m not planning to die yet.” Right on cue, I heard her almost childlike giggle, which made it nearly impossible not to smile.

  “Jayna’s here with me and says she’ll stay tonight. Enjoy your time with Jaret. You can sleep in the hospital with me tomorrow. It will be just like old times. In the meantime, find all the clothes on the list I gave you before you left the apartment. And I would like the treadmill back up here at your earliest convenience.”

  Nancy’s muted sense of humor made me smile again. The “treadmill” has become part of the Winn family legend. When Jayna first had the bright idea to buy a treadmill for Nancy’s room after her transplant, Nancy protested, “I will never use it.” Those were strong words from Nancy; she was dead set against it. But we thought that it would be beneficial, and with Jayna’s help, her mother’s stance softened. A week later, the hospital staff marveled when a hospital engineer inspected and put an “official” sticker on the fold-up NordicTrack C2200 treadmill that had just been delivered to our room. We placed it neatly in the far left corner facing the window to take advantage of the spectacular view of the mountains.

  As I signed the purchase papers that day in the hospital room, the delivery crew told me, “Oh, by the way, this is a first. We’ve never made a delivery to a hospital patient. There is no delivery charge—this one is on us. We hope your wife is better soon.”

  Jayna and I used the treadmill every day after that and a week later, when Jayna and I returned from a brief cafeteria run, we found Nancy gingerly walking on it. “Don’t either of you say anything,” she stridently cautioned Jayna and me. “What a view!”

  So given her less-than-positive response to our original gift, I felt unencumbered and unrestricted in my response, “Well, Nancy, I guess if you want the treadmill there, you can’t be too sick. I guess if Jayna promises to call . . .”

  “Jayna, will you call Dad if I get worse? Winnie, she’s giving you a thumbs-up. Now go watch a football game with Jaret and then get some sleep.”

  After saying good night, I hung up without responding further to Nancy. “That’s easier said than done,” I verbalized to what was now a disconnected phone. With my feelings unbridled, I grabbed two Kleenex boxes for my nightstand. Though the football game was an agreeable distraction, the rest of the night was filled more by questions than answers.

  Should I have noticed something sooner?

  Did I bring home a bug from the office?

  Have I kissed that beautiful bald head too many times?

  When I finally dozed off, sleep was not friendly. Germs that looked like termites from a Terminix TV commercial marched through my dreams. The new apartment was full of them. They covered the walls. They covered the floors. They marched in a straight line from behind the couch toward Nancy, who was lying in bed reading a book. When she turned a page, they jumped on her from between the pages and were joined by their brothers-in-arms who were ascending the bed. Time and time again, she attempted to swat them away but could only look at me with a frightened and terrified face.

  In another dream, I lay next to Nancy in bed, but somehow I was running on the treadmill. Before I could come to Nancy’s rescue, a giant germ jumped in front of me, poised to bite. He had four protruding eyes and twenty or so hairy arms and was fully a foot taller than me when he stood on his hind legs and made a hissing sound. He was so horrific; I awoke with a jolt. I sat straight up in bed, palms and forehead sweaty, trying to get my bearings in the middle of the night.

  I didn’t attempt a return to my dreamland because being awake was easier and less stressful than being asleep. Instead, I ventured out on the deck to watch the sun peek its brightening orange head above the eastern horizon. The early morning light revealed a thick gray mist rising from the frozen river. It floated eerily upward into the snow-covered branches of the nearby trees and, given my recent dream, was more chilling than I would have liked under different circumstances. After all, Woodland was normally my safe place.

  As the sun’s rays increased in intensity, they created sparkling reflections in the snow. In every direction outside the bedroom windows. I witnessed nature’s beauty, which lifted my spirits. Two deer, a mother and daughter, casually walked by to drink from the part of the river that wasn’t completely covered with ice. The morning magic embraced me, wiping away the night’s bad memories. The giant germ was just a distant recollection, and after much consideration, I decided not to bring the treadmill back to the hospital.

  Summary: I have been “off the grid” because it has been a calm time. No longer. Last night Nancy reentered the hospital with a fever. I will write later when I know more. Thanks in advance for an extra positive thought about Nancy today.

  Much Love,

  Winnie

  Balancing on a Tightrope

  December 11, 6:02 p.m.

  Dear Friends and Family,

  It was a welcome sight to see a friendly familiar face when I arrived on the fifth floor at the University of Utah Hospital today.

  “Good to see you again, Winnie.” Lisa, like the other nurses and personnel on the floor, still remembers us. Though it seemed like a long time ago, it’s only been two weeks since our last hospital stay.

  “Does she still have a fever, Lisa?”

  Lisa looked at the floor and said somewhat hesitantly, “39.7, Winnie. Bless her heart.”

  “Guess you’re still providing the heat in here, sweetheart,” I told Nancy as I entered her room and kissed my favorite, now somewhat disarrayed and fuzzy head.

  Even without a fever, Nancy warms any room. But 39.7 degrees Centigrade? I quickly did the math in my head. 103.5 degrees Fahrenheit. In an infant, that is a very high temperature. And when I discuss a 103.5-degree fever with the mother of one of my pediatric patients, I usually say, “It feels like I could fry an egg on your daughter’s stomach.”

  But Nancy?

  My wife, as you well know, is not in the pediatric age range—103.5 degrees is very high. During my medical training, a fellow resident contracted measles and had a temperature similar to Nancy’s. His fever caused a seizure and he hallucinated.

  So Nancy’s fever, in and of itself, is scary—but even scarier are the three critical questions such a temperature raises:

  1. Where is the infection?

  2. Is the infection viral or bacterial?

  3. And most important, will it respond to treatment?

  Jayna has learned more medicine in a few months than many students do in their first year of medical school. She was quick to report that the required tests had been completed. She also assured me that Nancy’s IV contained “big gun” antibiotics.

  With luck, Nancy’s fever is m
erely the signature of an everyday virus.

  With luck, Nancy’s fever will leave her as quickly and mysteriously as it arrived.

  With luck, Nancy’s fever will depart, leaving Nancy unscathed.

  Immediately, I thanked Jayna for the information and gave her a hug. I also did the best I could under the circumstances to pretend that I was not having “bad” thoughts, because I was (once again) in the distasteful position of knowing that I know too much.

  So why would I be so concerned?

  Nancy’s immunity is barely forty-five days old. If you imagine her immune system as a brick wall, the bricks are there, but the mortar is still lacking. There is a specific part of her immunity, the T-cells, that not only needs to grow and mature, it will need to not be suppressed by her medicines as it is now. The balance between infection and graft-versus-host disease is a daily tightrope that now may be unbalanced.

  Currently, Nancy remains in good spirits, continuing to make me laugh during the brief periods she stays awake. Though very weak, she is quick to reassure me that she has no new or significant pain. A few moments ago, she laughed ever so lightly and said, “I can’t wait to get back on that treadmill.”

  Summary: Though we are back in the hospital, Nancy’s spirit is strong and she is not in pain. We are anxiously trying to determine the cause of her fever while hoping that it will respond to treatment.

  Love,

  Winnie

  So You Think You Can Dance?

  December 18, 6:41 a.m.

  Dear Friends and Family,

  Our hope for a “short stay” in the hospital has faded like a winter sunset. Each ray of distant hope has been replaced by a cold reality.

  Simply, we’re still here in the hospital.

  Even though it is wonderful that Nancy is not receiving any “poison” chemotherapy drugs as she has in the last three hospital stays, this hospitalization has two very undesirable similarities to her initial trip to the hospital.

  First, this visit was not scheduled like her other chemotherapy stays. It is entirely open ended. Regrettably, we have no idea of how long she will be in the hospital.

  Second, during the other times Nancy was hospitalized, the focus was the treatment plan and hoping there were no major side effects. Now, like her first hospital admission, the focus is discovering the reason for Nancy’s symptoms and then, if possible, treating the root cause.

  Consequently, this round seems considerably more ominous and it is very difficult for me to keep my chin up. But with Nancy to buoy my feelings and the great medical care we continue to receive, I hope to soon report that we are on our way home.

  A story that began last night best illustrates our situation.

  “Is your dance card full, my lady?” I say to Nancy after she alerts me she is in need of my help.

  My comment elicits more than a smile from Nancy. After feigning a search of our mostly darkened room, Nancy bursts into a long, full laugh. (I still marvel at her amazing spirit. If you touched me, in contrast, I would break into a thousand pieces.)

  “No one else here, Winnie. So I guess you’re stuck with me.”

  As I wrap Nancy in my arms, I can’t help but feel the intense warmth of her 102.8-degree fever. I slowly guide her small, uncertain, shuffling feet until we reach the bathroom door as I cherish our closeness. I think to myself what a great idea. She’s not unsteady when I hold her like a dance partner. (Her previous trip to the bathroom was nearly a disaster. When she stumbled, I barely caught her in time to prevent what could have been a catastrophic fall.)

  On the way back from the bathroom, I elicit a second laugh from Nancy with my off-key rendition of Strangers in the Night. We reached her bedside still in the dance position.

  “Let’s do that again, Winnie. Probably within the hour.”

  Nancy places a full kiss directly on my lips. Not a small kiss, mind you. Not a peck on my cheek. The room almost spins in the semidarkness. I feel like I’ve been transported back to the senior prom. “You must really be delirious, Nancy.”

  It’s been a long time, my love.

  “I’m not delirious. It’s my way of showing you how I feel.”

  “You feel hot. You need to get back beneath the covers. You’re shivering.”

  By the time I stretch four heavy, white blankets underneath her left arm and right foot, Nancy is asleep. I place multiple soft kisses on that beautiful bald head, barely visible in the light from the IV pump.

  “Winnie, can I have another dance?”

  I can’t help but think to myself as I get groggily up in the dark of our room, Already, Nancy? It’s three in the morning and it’s only been twenty minutes. Then more awake and with my wits more fully about me I say, “Let me help with your slippers, sweetie.”

  “Hurry . . .”

  By morning, my exhaustion is overshadowed by deeper and darker emotions:

  Apprehension.

  Melancholy.

  Fear.

  Sunlight from the east heralds day seven of this hospitalization. It already is more than double our anticipated three-day return to the fifth floor of the University of Utah Hospital. Nancy has endured repeated blood tests, cultures of every part of her body, and multiple X-ray scans in search of a germ and where it might be hiding. So far, each examination has been negative. Good news, yes. However, each test is a search for an unwanted culprit.

  Uncertainty extracts a large toll psychologically on both the caregiver and the patient. Nancy’s forehead wrinkles are now more visible. Her uplifting giggles are less frequent. She doesn’t want to be alone for long.

  “What do you think this means, Winnie? I truly enjoyed our dances last night, despite your singing. But a bathroom waltz every half hour? Do you think my diarrhea will ever slow down?”

  As I begin to formulate answers to Nancy’s tough questions, Richard enters our room. The most flamboyant of our nurses, Richard is usually more like our maître d’ than one of the hospital staff. Today he waves both hands in a full circle like a prop plane’s propellers as he glides gracefully toward Nancy.

  “Hello there, Winns,” he says as he snatches up each of the four different juice boxes on Nancy’s bedside table. Then with a police officer-like voice, he declares, “Nancy, you are officially NPO (nothing per oral). No more fluids or food for you. You have graft-versus-host disease in your bowel. We have to rest it beginning immediately.”

  Nancy’s mouth drops and tears form in both eyes, which no longer sparkle.

  As an uncontrollable wave of heat races through my body and my face flushes I blurt out, “What are you saying, Richard?”

  “Winnie, what I’m saying is that Nancy’s bathroom problems are indicative of GVH disease. Almost every allotransplant patient gets GVH—especially if they’re older than forty-five. The likelihood is something like 80%. Don’t look so shocked. Graft-versus-host disease isn’t all that bad. A little GVH protects against a leukemia recurrence.”

  I want to immediately ask two questions: “How do we know Nancy’s GVH will be a ‘little?’” and “Why does it have to be now?” But I don’t ask either of my potential inquiries as I look at Nancy’s face and see that she is devastated because she has had her heart set on celebrating Christmas away from the hospital. My questions are not asked because I don’t want Nancy to hear the answers, and I realize that I’m not sure if I want to know the answers either. I simply hold Nancy’s head to my chest.

  Richard saunters from the room with Nancy’s drinks, nodding his head since both hands are filled.

  “I’m thirsty, Winnie.” Nancy murmurs. “I was just starting to taste things again.”

  For a moment I feel like I’m watching a Mideast peace report on TV and everything is hopeless. I even fantasize about tackling Richard before he closes our door and pilfering at least one of the near-empty drinks from his hands. Instead, I say, “It’s all right, Nancy. GVH is just a new minor detour. You’re flexible, right?”

  “I guess I still have leukemia, d
on’t I?”

  Minutes later, our attending physician, Dr. Pulsipher, entered the room and confirmed our new concern: “We need to be sure about what’s happening to Nancy’s GI system, Winnie. We probably should do a colonoscopy as soon as we can reverse her blood thinners. If at all possible, we’ll shoot for tomorrow. I’ve already talked with Dr. Herbst, a gastroenterologist who works with our patients, and asked him to biopsy Nancy’s bowel. The pathologists can look at the tissue to see if immune cells are attacking it and then we can be sure about the diagnosis.”

  “And if it’s GVH?” I whisper so as not to awaken Nancy.

  “We will begin treatment. GVH is graded from one to four, with one being mild. If it’s mild GVH, we will simply rest her gut. If the grade is above one, we will start steroids.”

  I sank very low in my chair as I heard this not welcome news.

  “Remember, we expected Nancy to have GVH sometime and somewhere. Today is day fifty-two post-transplant. Again, let me remind you that it would be very common for her to have it.”

  The next night, Nancy slept better than I did and we had far fewer “dances.” The good news is that her temperature remained normal for the entire night. So I left for work in the morning and headed to the mountains tired but encouraged and cautiously optimistic. Then several hours later, between seeing patients, I received a different update when I checked in with Jayna.

  “Well, Dadder, Mom is feeling bad again. Her fever is back. The doctors are still worried about GVH. They want to study the upper part of her bowel on Monday if things don’t turn around.”

  It has been a week of ups and downs. And this morning, Nancy expressed her disappointment and sadness. She described doubts and demons that constantly lurk in the back of her mind. Yet, like always, she recovered with new resolve and her incredible capacity to think of others.

  “Winnie, now that I’ve gotten that off my chest, you know what I’m thinking? Everyone should be enjoying Christmas, not worrying about me. Maybe you, Jayna, and Jaret should go to Woodland for Christmas. What do you think?”