Night Reflections

by Robert Thomas Winn

  “I remember a lady who once told me ‘Life is rarely fair.’ But as I recall, she wasn’t bald back then.”

  I remove Nancy’s Santa hat to kiss her head amid more merriment. The Santa hat is appropriate even though she didn’t purchase a single present this year. Somewhat wistfully, I long to freeze the moment and the warmth I feel inside my body. All I can see is the happiness on faces that surround me. Unfortunately, moments in time don’t freeze and the door opens unexpectedly.

  “I guess it is a little late to say, ‘Good Morning, Winns.”

  Julie Asch, our attending doctor, walks into our room with only two of the “regulars” from her entourage. The clock reads three-thirty in the afternoon. It is many hours past Julie’s customary morning visit time. (Holidays in the hospital are different for the doctors, too.)

  “I thought you forgot me today, Dr. Asch.”

  “Not a chance, Nancy. As you might imagine, I had some pressing family business this morning. I left a living room full of decorations and opened boxes to come see you.” Dr. Asch gestures at our messy room. She is not wearing her traditional white coat, and she looks as relaxed as my bride. “Well, Nancy, I am ‘Dr. Santa Claus’ today. All your numbers look good, and your bowel seems to be behaving better. We can start full clear liquids this afternoon. And do you remember the winding tunnel I described to you yesterday—with twists and turns, and even an occasional dead end? I think we might be seeing the first rays of light at the far end. If all continues well, we may try to get you out of here soon—maybe sometime next week.”

  I don’t believe that I’ve ever heard such beautiful words.

  “Really?” Nancy’s face brightens the entire room.

  I bend over the bed, attempting to give Nancy’s forehead a kiss, but she guides me to her lips. My legs wobble after so many weeks of being so cautious about spreading any germs to Nancy’s weakened and compromised body. She whispers in my ear, “Winnie, this Christmas is the best ever.”

  As Jaret and I head for the door, I turn back and Nancy is already dancing with sugarplums. Her presents have disappeared from the bed, but the red Santa hat with white trim peeks out from under the edge of the green blanket. I think to myself as I walk to the car that, indeed, this is a Christmas to remember.

  Summary: Today we celebrated Christmas inside the hospital. Unlike past years, we did not have a live tree, hot drinks were not served, and our traditional Christmas was not prepared by Nancy. But nonetheless, this year’s holiday will be a Christmas we will never forget. Our family was together and joined in celebration as Nancy’s condition improves.

  With much love,

  Winnie

  Warts and All

  December 30, 11:46 p.m.

  Dear Friends and Family,

  At long last, it’s finally time to make a quick exit.

  Since the current round of hospitalization had been unplanned, we didn’t have much to load into the back of the Subaru, which made packing the car a snap today. Unlike previous “rounds” we hadn’t brought any of the normal decorations. In fact, we didn’t even have Nancy’s pajamas to repack because when she was initially admitted, she hadn’t planned on staying. And then, once there, we concluded, “Why bother?” (So we didn’t! Everyone, including us, had hoped Nancy would be out in less than three days.)

  We were really wrong this time, however.

  This time, Nancy spent nineteen days in Room 506.

  “How many times have we done this, Dadder?”

  “Let’s see.” Even though the last seven months are somewhat a blur because I live mostly day to day, this particular statistic didn’t require much thought: “This is our fifth hospitalization, Jayna. But only our second move back to the apartment from the hospital.”

  Going back to the apartment again was like watching the same movie for the second time. I noticed many things anew that had been missed upon my initial viewing. Coming back to the apartment was like seeing new characters, scenery, and dialogue. The steps from the car to the front door were longer than I remembered. (Especially after I made seven trips to bring in fresh groceries.) The front door didn’t close easily and made a squeaky noise that will wake up everyone when I arrive home late from work at the clinic. The kitchen appeared much older and smaller than when Nancy went back into the hospital three weeks ago. The purple-flowered wallpaper looked like something from the old TV show The Adventures of Ozzie and Harriet. (There isn’t even an icemaker in the refrigerator.)

  By far the worst aspect of the apartment is the room we have “designated” Jayna’s bedroom. It’s pretty obvious now, but we somehow missed its original purpose. Her “bedroom” was designed to be the dining room. It doesn’t have any doors. And it can’t even properly be considered to be part of an open floor plan because it is conveniently located in the middle of the passageway between the living room and the kitchen.

  As I walked through Jayna’s bedroom and put the last bag of groceries on the kitchen counter, I silently chuckled to myself about the many blemishes I now recognize in the harsh light of our return visit. With perspective, though, the apartment’s character flaws pale in significance to what’s truly important.

  When I stop for a moment and glance into our bedroom, Nancy is already asleep. It is a deep and serene slumber aided by the realization that she is out of the hospital at last. I find myself smiling even though I know that the apartment will be our home for the next three to six months. In the future, no one will awaken Nancy to check her blood pressure. The only beep she might hear will come from my phone if I forget to make the switch to silent mode when I climb into bed late at night. She will be able to venture not only to a bathroom but also a kitchen, an ex–dining room/bedroom, and a living room with couches and chairs. She will be able to wear as little or as much clothing as her heart desires without the fear that a stranger will interrupt to check equipment or a medicine cart.

  My reverie was interrupted when Jayna tapped me on the shoulder, grabbed my hand and lead me to the living room: “I know what you are thinking Dad. My bedroom is fine. We’ll be fine.”

  Clearly our apartment has some now obvious warts, but at the same time, it also has some fantastic “smiles” that fill the apartment with happiness.

  After all, in the end, what really matters?

  Loved ones, family, and close friends are what matter in the world. We have made it through another crisis, and the love of my life, though weak and tired, is ready to resume her recovery.

  I can say without any hesitation—I’ll take the apartment every time, warts and all.

  Summary: Though much of the luster is gone, we are pleased to be back into our Salt Lake City apartment and out of the hospital. We are upbeat at the moment and certainly hoping from here on out for a smoother ride.

  Hopefully yours,

  Winnie

  Tonight’s the Night

  January 1, 1:17 a.m.

  Dear Friends and Family,

  Yesterday was day two in the apartment—December 31, the last calendar day of a very, very difficult year.

  A large part of our day was spent watching Jayna modeling outfits for her mom. Finally, after what seemed to be hours to me, they agreed on a certain pair of jeans, new boots, and a light-blue sweater that highlighted Jayna’s eyes and newly manicured off-blue fingernails. Shortly thereafter, Jayna gave each of us a kiss, saying “love you” as she raced out the door, leaving for a party scheduled from 2 p.m. until sometime into the wee hours of the night. Not surprising, Nancy had the satisfied look of a mother happy that her daughter was doing something normal for a twenty-one-year-old. In all honesty, I must admit I was equally thrilled as well. (And not to be forgotten, Jaret was already in Woodland, excited to watch his favorite shows on our TV, which is bigger than his.)

  This year’s New Year’s Eve celebration was a bit different for Nancy and me. There weren’t any specialty drinks (or even the slightest hint of alcohol), and there wasn’t a sumptuous meal before midnight. (Nanc
y did tolerate two pieces of toast around noon. We even put a smidgen of butter on the second slice.)

  Nancy did promise me a dance at midnight, though.

  “Winnie, I want to see the ball descend in Times Square and hear ‘Auld Lang Syne’—while we are dancing.” When she made this request, I wondered if she knew that Robert Burns composed the song from a Scottish poem he had written in 1788 and that the title translates to “old times.”

  Nancy’s promise to “dance the night away” was made a little over two hours ago, between taking her six bedtime pills and emptying the IV bag containing her nutritional supplement. She had expressed the idea just as I was completing the daily dressing change on her central IV line—the one that enters her body just below her left clavicle. Two days earlier, it had been a worrisome task because the site had looked red and ugly. Fortunately, the redness is almost gone now.

  “Winnie,” Nancy said as she grabbed my hand the minute the dressing change was complete, “I’m not forgetting our dance tonight, but I’ve been thinking. What would someone do if they had leukemia but were alone?”

  “I don’t know, Nancy. But you are definitely not alone. There’s me, Jayna, and Jaret. And then there’s your sister, and Emmy, and my sister Suzie, Janis, Mona, Julie, and Patricia. John, Fred, Anne and Bob. Sarah Anne, Joannie, June, and Marion. I could go on and on, my love. You’ve got so many helpers. There are scores of other friends just waiting for my call. I’m not even counting those far away, who have offered to help and are willing to travel to provide it.”

  “But some people are alone, and I could be. Don’t you wish you were out having fun tonight?”

  “I am having fun. It was a challenge tonight to get your dressing just right. And I couldn’t be happier to see that the port site looks better now.”

  “Winnie, you know what I mean—the things normal people do on New Year’s Eve. I wish you could do what you want.”

  “Nancy, Nancy—I am doing what I want.”

  As I kissed Nancy’s beautiful bald head. I felt a prick on my lower lip. “What’s this?” I asked as my index finger rubbed the new stubble that singularly stood straight up atop her head like a lone cactus in the middle of a too-dry desert. “Are you growing hair?”

  Nancy’s semi-frown transformed into a grin and she laughed out loud. Even after more than a quarter century of New Year’s Eves, I felt true tenderness in the pit of my stomach and warmth in my heart.

  “Seriously, Winnie. I hope you’ll be able to enjoy things more next year.”

  “And I hope to have someone healthy to enjoy them with . . .”

  “Do you know what my favorite New Year’s was, Winnie? The year you, Jaret, Jayna, and I watched the Times Square ball drop during our early days in Woodland. We drank sparkling cider and Jaret was on my lap and Jayna was on yours as well. It was the first year both of them stayed up until midnight. They were so proud.”

  “Well, it’s just us tonight. And while there’s no cider—I do want to watch the ball go down. And to have that dance with you when it does. If you make it, that is.”

  “Sounds dreamy, Winnie. Wake me up just before midnight.”

  It is now January 1, more than an hour into a brand new year. Our dance, though short, met all expectations. It ended with a Kleenex for both of us. Nancy is in bed now, with the same relaxed look on her face as when Jayna scurried out the door. It’s after midnight and we are home in our less-than-perfect apartment, without sparkling cider.

  Nancy didn’t ask about my favorite New Year’s Eve.

  The winner is so clear.

  My favorite New Year’s ever?

  Tonight.

  Summary: Nancy’s CMV infection is under control and there isn’t any “hard” evidence of GVH. So Nancy was discharged two days ago and we’ve returned to our Salt Lake City apartment. She is day sixty-six post-transplant, and we have only thirty-four more days before we hit the magic one-hundred-day post-transplant milestone. Our New Year’s wish is to spend our days quietly in the apartment, with Nancy’s health improving, and then, assuming all goes well, to return to the mountains and all our friends. And finally, I would be remiss if I didn’t wish Happy New Year to you and your family.

  Sincerely,

  Winnie

  The New Normal

  January 8, 7:23 p.m.

  Dear Friends and Family,

  Today, there were bigger games afoot than football.

  “Winnie, can you make me David and Nancy’s homemade soup?”

  “Boy, can I.”

  (Our apartment doesn’t have a dishwasher—other than Jayna and me—but it does have a microwave. And soup is part of my well-known repertoire.)

  “Here it is sweetheart, chicken noodle soup with lots of fixings. It smells sumptuous.”

  After one bite, Nancy confirmed the verdict: “Wow, this really does taste good.”

  By the end of the midday game, Nancy’s bowl was empty. She also devoured a strawberry Carnation Instant Breakfast, made with soy milk and spiked with orange sherbet. This was the first time in our ten days on the “outside” that Nancy had eaten the equivalent of a full meal. “That cold, orange flavor not only tastes good, but it feels good on the back of my throat. Can I have some more?” It was also the first time she had asked for seconds.

  The result of the nourishment? Nancy was full of energy and quite animated. After one touchdown, she screamed, “Yes!” and stood up to give Jaret a high five. She hooted and howled at two of the commercials, she whooped and shrieked at the refs, and she whooped, hollered, and grabbed my hand during the most intense moments of the game. I had not seen her so full of enthusiasm in many months.

  The bowl game lasted a full five hours because of all the overtimes and commercials. Twice Nancy walked over to Jaret and Jayna, who were on the other couch, and gave each of them a hug. (She was unhooked from her IV since we had planned her medicines around this particular game.) During the postgame interviews, Nancy sneaked away from the couch and after a while, I could hear the sound of running water.

  When a commercial came on, I walked into the kitchen. “Nancy, what are you doing?”

  There were clean dishes in the sink and a look on Nancy’s face like I had caught her with a hand in the cookie jar. “I live here too, Winnie. I get to help when I feel like it, don’t I.”

  You have helped, my love. More than you know.

  Immediately after finishing the dishes, it was time for Nancy’s dressing change, Nancy’s six nighttime pills, and the twelve-hour IV containing the medicine fighting Nancy’s CMV infection. But for one evening, it was like old times.

  “Winnie, tomorrow night can we play that board game we got for Christmas? All four of us?” (That’s not a “normal” activity for our family. Rather, it’s something new.)

  “Sounds like fun to me,” I answered, rushing to the bathroom to hide my moist eyes.

  Summary: It has been a great week because it was delightfully boring and uneventful. For the first time in months, we are daring to think about tomorrow. Here’s to “new” days, even ones that are not quite normal.

  With love, hope and promise,

  Winnie

  Sharks in the Water

  January 22, 3:16 a.m.

  Dear Friends and Family,

  It has been pretty monotonous (and wonderful) the last two weeks. So there hasn’t been much to report—that is, until my phone rang yesterday morning.

  “Hello, this is Susan from the University Infusion Center. We have a delivery for Nancy Winn and want to confirm that someone’s home.”

  “Hi, Susan. This is Nancy’s husband, and unfortunately, she’s at her weekly doctor’s appointment. And I’m at work in Park City. What do you have for us today?”

  (Supplies and medicines arrive two or three times a week at our Salt Lake City apartment. So calls like this are not unexpected and have become part of our daily routine.)

  “Let’s see. Heparin flushes, tubing, and some IV bags with Amphotericin�
�

  “Excuse me, Susan, did you say Amphotericin?” (Amphotericin is a potent though highly toxic drug that combats fungal infections. Luckily, Nancy has never been required to take it. My hand went limp and I almost dropped the phone as I wondered, “Why would she need it now?”)

  “Yes, Mr. Winn. I did say Amphotericin. It will be in her nighttime IV. When do you expect your wife back at your apartment?”

  “I’ll check, Susan. And then call you back.”

  “Fine, let me know as soon as you find out.”

  My heart sank as I heard the click on the other end of the telephone line. A flurry of thoughts overwhelmed me.

  Was our peaceful period over?

  Does Nancy have a fungus?

  A fungus could be big trouble.

  By reflex, I dialed Jayna’s mobile number immediately. Jayna was at the Blood and Marrow Transplant Clinic with her mother because I was at work at the clinic.

  “Hey, Dadder. We’re still at our appointment. We’re just finishing up and talking with the doctor. Let me call you back in a couple of minutes?”

  “Uh . . . all right, Jayna.” I put my phone away while I replayed my conversation with Jayna over again in my mind.

  Did she sound upset?

  No.

  Worried?

  Not really.

  Before I could decide what to do next, a familiar vibration jolted the area over my heart. I pulled my phone from my chest pocket. But before Jayna could even say “Hi,” I blurted, “Jayna, is there something wrong with Mom? What’s going on?”

  “She’s fine, Dadder. In fact, everyone on the team said she’s doing great. They’re stopping two of her pills and cutting back her nighttime IV. Why? What’s the matter?”

  I recounted my phone conversation with Susan. Jayna reassured me that no one had mentioned the dreaded word fungus or, for that matter, Amphotericin.

  “Thanks, Jayna. You’ve made my day. No, my week.”