Night Reflections

by Robert Thomas Winn

  “The banner over the front door was professionally made, wasn’t it?”

  “Not to worry now, Nancy. We’ll thank each member of your ‘welcoming’ committee in good time. They love you, Nancy, and they had so much fun. You have so many friends.” I caressed and touched her arm ever so lightly. “I can’t figure out why.”

  Nancy wrapped her arms tightly around me. A real kiss warmed my lips and a familiar tingle reached my toes.

  “Sweetie, you need your rest. I’ll be upstairs opening mail.”

  Nancy slipped beneath the comforter and I slowly stroked her forehead. “They did too much.” Seconds later, Nancy had entered dreamland.

  I whispered, “I forgot to tell you that Joannie and Janis did the cleaning.”

  After quietly closing the bedroom door, I raced upstairs to our family room for a final check. Everything was ready. Each minute seemed like an hour. I tiptoed downstairs three times. A faint smile brushed Nancy’s lips, but her eyes remained closed.

  An eternity later, I heard a faint, “Winnie?” in the distance.

  “I’m up here, Nancy. I’ve brought wine and snacks.”

  “I’ll be right up.”

  When I heard Nancy at the bottom step, I jumped up to meet her mid stairway.

  “Here, put this on.” I placed a blue fleece ski hat on Nancy’s head and pulled the front down just above the bottom of her nose so it covered her eyes. “No peeking. I have a small homecoming surprise for you.”

  “Winnie, what are you up to now?” Nancy shook her head but complied with my request. I led her up the last step and into the middle of our upstairs family room.

  “Are you ready?” I asked her.

  I slowly raised the stocking hat above Nancy’s eyes. She blinked twice as she refocused her eyes and then her whole body flinched as if hit by a bolt of lightning. In front of her was an oak bookcase that spanned the entire far wall of our family room. Neatly arranged were all her favorite books, randomly spaced between the many knick-knacks I had collected from the hospital, past trips, and even some “coming home” gifts from friends.

  Nancy quickly sat down on the couch. She hugged me as I whispered into her ear, “The shelves are adjustable for different sizes of books and whatever else you want on them. I just added a few things so you would have an idea of what’s possible.”

  Nancy’s head tilted to rest on my shoulder. “I love it, Winnie. You shouldn’t have . . .”

  With a start, Nancy’s head lifted from its perch. “What happened to the TV?”

  The giggle was mine this time.

  “It’s gone to TV retirement land.”

  Our family TV had once sat in front of the wall that now contained Nancy’s bookcase. Once big and beautiful, it had finally surpassed twenty years in age. It was so old that when I watched a basketball game in its last years, the score was too fuzzy to read, and its colors were dull and faded.

  “But what are we going to do?”

  “Don’t worry, my love. I know you’ll be spending lots of time in this room over the next six months. When you’re not reading, you can watch whatever your heart desires.”

  As I was speaking to Nancy, I slid the remote from my back pocket, pointed it at the bookcase, and pushed the button. A movie screen slowly descended from behind the fascia at the top of the bookcase. The screen was large—one hundred inches wide to be exact. I pushed another button. The huge screen filled with life-size faces and sound filled the room from in front of us, from each side, and behind us. Nancy turned around and discovered why she had been asked to wear a blindfold. New speakers and a projector hung from the ceiling behind her.

  “Surround sound? It’s the biggest TV I’ve ever seen!”

  Nancy’s eyes were not only wide—they were moist. I handed her a Kleenex and I took one for myself, too.

  Nancy put her head on my shoulder again and closed her eyes. “Is it all right if I shut my eyes for a moment?”

  “Yes, sweetheart. You rest. We can watch TV later. I plan on us being here a long time.”

  Summary: Home at last.

  Thanks again,

  Winnie

  The Essence of Happiness

  May 7, 6:16 a.m.

  Dear Friends and Family,

  My recent silence reflects a relatively tranquil five weeks. The past month has been more calming than a night at the symphony, balmier than a tropical beach at sunset, and gentler than a summer afternoon breeze.

  After almost a year of turmoil, I am home with Nancy.

  Though I’ve always tried to appreciate each and every day, I didn’t fully realize that the most mundane things can be fun. I used to dread such tasks as doing the laundry, cleaning the house, or unpacking from a long trip away. Now every daily activity has joy attached because it is done with or for Nancy. And the things that I already cherished are even more special—a tasty meal prepared in our kitchen, movies and the NBA playoffs on our new home theatre, or walks in the woods along the river.

  A week ago, as I examined three daffodils poking their bright-yellow heads through ground still covered by snow, I couldn’t help but wonder about many things in my life.

  Is Nancy as excited as I am to be far away from nurses and needles, sterile smells and scant scenery, bells and buzzers?

  Is she enjoying our small, secluded island of paradise, savoring each moment like a sip of fine wine?

  Is she still consumed with making it through each day?

  Is she worrying about tomorrow?

  And am I selfish to want her to be with me every moment of the day?

  We’ve been at home now for five weeks, sleeping together in our comfortable bed. As always, I awaken first. I quietly linger to watch her gentle breathing, but since today is her weekly Salt Lake City doctor’s appointment, I know Nancy has to get up two hours earlier than her normal 11 a.m. rising time.

  As an alarm, I gently rub her head, which is covered increasingly with hair. It is no longer stubble standing straight in the air. The finely peppered strands are soft and long enough to twirl and run my fingers through gently. Slowly one eye, then the other, opens. The brilliance of their sky-blue color strikes me and momentarily brings heat to my face.

  “Good morning, Nancy. How do you feel this morning?”

  Nancy hesitates, wrinkling her forehead. She puts her hand on top of mine and rubs her head with me.

  “It finally hit me last night, Winnie. I almost woke you up.”

  “What, my love?”

  Nancy sits up and puts her hand on my right cheek while placing a kiss on the other.

  “I’m happy. I am really happy.”

  Nancy’s smile widens, reinforcing her words as I remove a Kleenex and feign wiping my nose.

  Instead, I gently and delicately touch my eyes.

  Summary: Nancy and I are at home, living almost normally. And we are both daring to be happy again.

  All our love,

  Winnie

  A Toast to Regularity

  May 22, 10:04 p.m.

  Dear Friends and Family,

  In my recurring fantasy, I want our home to be filled with nothing but wine and roses. I want each succeeding day to be better than the last. But in reality, all seven-month post-transplant patients face complications.

  When Nancy has a “busy” day (going to the store, entertaining a guest, taking too long a walk), the next day she is often fatigued. Most of the time, the following day will be spent in bed—and if a bodily system changes even slightly, we brace ourselves.

  At the six-week post-homecoming mark, Nancy experienced a major change. Over a three-day period, her GI tract became increasingly irritated. An emergency trip to the Blood and Marrow Transplant Clinic left my own stomach aggravated nearly as badly as Nancy’s.

  “Well, Nancy, we should have results back from your culture by tomorrow. If we don’t find an infection, we’ll have to consider the other possibility—graft-versus-host.”

  I masked a deep, audible sigh as I heard th
is unwelcome news. Things have been going so well for more than a full month. Yet in a heartbeat, we receive a reminder that we are still part of “transplant world.” For us, each day is surely precious. But each day can also be fragile.

  Nancy squeezed my hand, comforting me. I felt slightly embarrassed because she was the one with the IV fluids running into her vein. Her gesture did give me renewed strength, even resolve, to face the unwanted possibilities. But this time, the news was once again good.

  “Nancy, now that we’ve filled up your tank, you can go home. But you need to drink, drink, and drink. If you get dehydrated again, we’ll have to put you back in the hospital.” Once again, Nancy took these words as a personal challenge. By the time we received a phone call the next day, there was a bottle of water or Gatorade on every table and night stand in the house.

  “Nancy, this is Rene. We already have our answer—your stool culture grew C. difficile.”

  I have lost count of the number of GI germs Nancy has contracted, but this was a new one. C. difficile (Clostridium difficile, or C. diff) is a gastrointestinal bacterial infection that affects patients who have been on multiple antibiotics. Nancy’s giant pillbox overflows with medicines that probably make such news inevitable. In fact, Rene said it was surprising she hadn’t contracted C. diff earlier.

  “We’ve requested a medicine called Flagyl at the pharmacy, Nancy. Remember, keep drinking. We want to see you back in the clinic in five days—unless you’re having problems.”

  Nancy has continued to drink vigorously, though it is oftentimes a struggle.

  Flagyl is a particularly foul medicine that leaves any patient taking it feeling nauseated because of its metallic taste. Nancy was not the exception. Even though she is currently on twenty-eight pills per day, she lamented, “I would rather take twice as many pills instead of swallowing one Flagyl, Winnie.” She pinched her nose and forced down the first Flagyl pill of the day. She would have to swallow three more before bedtime. When I heard the retching sound of dry heaves, I raced to the kitchen to obtain a spoonful of peanut butter. (It is the best food we have discovered thus far to mask the horrible aftertaste of Flagyl.)

  The next four days were not exactly fun, even though we were home at Woodland. When it was not raining, it was gray—inside and out. Nancy felt terrible, and her stomach discomfort and activity remained unchanged. Sleeping became her favorite activity, making the time pass and getting her to the next pill-taking session. On day five of the Flagyl regimen, we took another stool culture to Salt Lake City. By the end of the following day, the results were ready.

  “Hello. This is Malinda from Bone Marrow. Nancy’s culture is still positive for C. diff. She must have a resistant germ.”

  One of my top-ten fears has always been that Nancy might acquire a resistant germ. I gripped the phone tightly as I pondered the significance. I realized that Nancy can’t exist with everything running like a broken faucet through her GI tract.

  “We need to change medicines, Winnie. We’re going to try Vancomycin.”

  (I know this drug well. Vancomycin, or Vanco as it is routinely called, is one of medicine’s most powerful drugs. It is used in situations when all other antibiotics fail.)

  “Thanks Malinda. Nancy is asleep, but I will leave her a note and run to the pharmacy immediately.”

  I hid my fears from Nancy, trying to be a husband and not her doctor. She was able to start the new medicine within the hour because I elected to obtain it in Park City, rather than the longer drive to the hospital pharmacy in Salt Lake City. Disappointingly, the day after we started the medicine, Nancy’s bathroom trips increased and we had to return to the hospital for IV fluids and a repeat culture. Thankfully, Nancy was allowed to come home, but more of each passing day has been spent sleeping. I held my breath each time the phone rang. When another day dragged past, I knew the culture results had to be available. I couldn’t wait any longer.

  “Blood and Marrow Transplant Clinic. This is Marilyn.”

  Marilyn was the secretary of the Blood and Marrow Transplant Clinic. She was a kind, pleasant, grandmotherly woman—but she was new.

  “Hi Marilyn, this is Nancy Winn’s husband. I wondered if you could pull up Nancy’s stool culture results on your computer. It’s been two days and I believe the result should be ready.”

  “Certainly. Let’s see. The C. diff. culture? Here it is. It looks like it’s positive.”

  My heart sank like a boat’s anchor. My eyes were moist. I had done some medical reading to see what happens if the Vanco didn’t work. Shockingly, no other options were listed.

  “Wait. I’m sorry, Winnie. That was the first culture, done on May 12. The one done two days ago on the twentieth is negative.”

  My heart returned to its proper anatomic position after tumbling over and over with joy.

  “Thank you so much, Marilyn.”

  The Vanco had done its job. Nancy’s C. diff., or “my bug” as she tells her friends, is gone for now. But deplorably, Nancy’s stomach problems still persisted. So we visited the clinic the very next day to be certain we were on the correct course.

  “I know it seems strange that with the C. diff. gone you are still having difficulty, Nancy. We need to wait until you finish the Vanco course to see if your bowel recovers. It’s been through a lot.”

  I didn’t verbalize or say what I was really thinking: “Her whole body has been through a lot, Malinda.”

  But we know how to wait.

  If nothing else, leukemia has taught us patience.

  The next day’s brilliant sunshine lifted Nancy’s mood. Even in her weakened state, we ventured outside to observe the many birds returning from their winter “homes away from home.” As the distant mountains on the horizon slowly swallowed the sun, Nancy gripped her pillbox. She raised her glass as she took the last Vanco. “To the passing of ‘my bug,’” she whispered while we clinked glasses filled with strawberry-flavored Gatorade.

  Despite the world’s most comfortable bed, my next two nights were restless. But by the third night, I was finally lost in dreamland and Nancy was again eating, walking, and most importantly, visiting the bathroom less regularly.

  Summary: Nancy had yet another setback, but she is once again back on track.

  Our very best,

  Winnie

  A Very Important Anniversary

  May 29, 11:09 p.m.

  Dear Friends and Family,

  Over the past many months of illness and uncertainty, Nancy’s disease has given us many new dates to celebrate.

  Her new transplant birthday.

  The one-hundred-day post-transplant milestone.

  Our joyous return home.

  Each and every negative bone marrow test.

  Tonight, however, when I looked at the time and date—I didn’t know whether to celebrate or cry.

  Last year on this date and at this time, give or take several minutes, the emergency room doctor at LDS Hospital confirmed my fear that Nancy had leukemia. Tonight, Nancy has made it to her “one year out” tests and she has passed all her tests with flying colors. A year out, there is still no sign or hint of leukemia recurrence. Her new, infant bone marrow is maturing nicely. And her lungs are working just fine, recovering from the damage caused by the many toxic drugs.

  Despite the bumps, the overall picture is crystal clear: Nancy is remarkably better than two months ago and light years different from this day one year ago.

  Summary: Last May 29, I was told Nancy had leukemia. The cancer doctor told me he doubted Nancy would survive the holiday weekend. I have not forgotten that fateful night even though a full year has passed. I feel blessed and in awe. And I want you all to know something else that is very important, too—we couldn’t have made it without your support.

  Warmly,

  Winnie

  Hope instead of Uncertainty

  July 9, 2:38 a.m.

  Dear Friends and Family,

  I didn’t plan to write much until this coming Octo
ber when Nancy would celebrate her one-year transplant anniversary—her new transplant birthday. However, yesterday (July 8) was another significant day that I almost unwittingly forgot—Nancy’s other birthday (her fifty-eighth).

  Nancy was able to fully enjoy her “birthdate” compared to last year when she’d arrived home just after the first round of chemotherapy treatments.

  On this birthdate, Nancy was able to eat a small salad and take several bites of one of her favorite foods, a rib eye steak.

  On this birthdate, Nancy took three bites of carrot cake saturated with scoops of vanilla ice cream sitting beside it.

  On this birthdate, instead of nasal oxygen and a central IV line for drugs, Nancy had a pillbox next to her plate, whose contents are steadily decreasing (down to twenty-two pills per day).

  On this birthdate, instead of celebrating like it may be her last, Nancy drank wine and toasted to many more.

  On this birthdate, Nancy knows that if things continue like the last two months, subsequent birthdays will be filled with warmth, happiness, and even fun.

  Best of all, on this birthdate, Nancy’s smile is confident and without pain. There is abundant hope instead of abundant uncertainty.

  Summary: On Nancy’s fifty-eighth “birthdate” yesterday, we had a true and utterly complete celebration.

  Our very best,

  Winnie

  Such a Long, Long Way

  July 17, 11:17 p.m.

  Dear Friends and Family,

  When Nancy awoke this morning, she announced, “I was dreaming you were making me a peanut butter and jelly sandwich, Winnie.”

  “Now there’s a dream that could come true. Do you want one?”

  “Actually, I’m not hungry. Maybe in a little while.”

  A little while passed, so I asked, “What would you think about a peanut butter surprise, Nancy? I can add mayonnaise and bananas instead of jelly. I can make it just the way you like your sandwich.”

  “I don’t think so. What I really crave is canned peas—over rice.”