Night Reflections

by Robert Thomas Winn

  I dialed the Infusion Center’s number the second after I said good-bye to Jayna.

  “Oh, I’m so sorry, Mr. Winn. The previous patient I talked with was the one due for Amphotericin. We don’t administer that drug at home often, so it must’ve still been on my mind. Nancy is scheduled for Ganciclovir in her IV, not Amphotericin—just like last week. Again, I’m really sorry to have worried you.”

  “No problem, Susan. Nancy will be back at our apartment within the hour. I’m very happy you were wrong.”

  But I was unhappy that sometimes I know too much. Unfortunately, knowing too much means I am oftentimes aware of the darker possibilities and constantly looking just below the surface for any danger.

  Fortunately, there weren’t any sharks today.

  Fortunately, there isn’t any fungus either.

  Summary: It has been another quiet two weeks and Nancy is making steady progress.

  Love,

  Winnie

  A Single Blade of Grass

  January 24, 12:22 p.m.

  Dear Friends and Family,

  “Let’s go outside.”

  The last time I was as excited to hear those three words was when I was eight and my friend Arthur knocked on the front door of our house just after a torrential thunderstorm. The lightning and downpour ended with a rainbow that seemed to end in the woods behind my house. I jumped at the chance to go outside and search for the pot of gold. Though there was no gold to be found, we did discover a huge oak that been knocked over by the intense wind that accompanied the storm. We created a fort beneath the tree’s roots that kept us entertained for the entire summer.

  Today, the rainbow came from my bride. Her tooth-filled grin reflected great pride, her eyes sparkled as brilliantly as a cloudless sky in summer, and her confident attitude was more valuable to me than the pot of gold at the end of the multicolored arc. It would be our first nonhospital trip and we were venturing into the “wilds” of Salt Lake City.

  Like a prisoner walking through an iron gate, Nancy looked in all directions as we slowly navigated the steps leading from the apartment. My thoughts raced ahead of us: What is most exciting to you, my love? The jagged, snow-covered mountains in the distance? How about the shaggy stray cat that gave us a start when it darted out of the bushes to our right? Or the leafless trees revealing knobby and twisted branches only seen in the gray of winter?

  “How do things look to you, Nancy?”

  “Wonderful. Everything looks wonderful.”

  When I made my way to the car after returning to the apartment for a mislaid wallet, Nancy was seated in the back seat of our Subaru. Jayna was firmly positioned in the front and had claimed the driver’s seat.

  “Nancy, you should be up front.”

  “Aren’t people with leukemia allowed to sit in the back seat?”

  Our few hours out were unadulterated joy. Observing Nancy rediscover the world was like taking a refugee back to their native country after many years away. She became animated when we rode by the house Jayna will move into when we return to the mountains—pointing out the nearby grocery store, the white wooden fence, and the single large tree in the front yard with a rope swing on its lowest branch. She recounted in great detail the many TV commercials from her hospital stays as we walked down the aisles in the grocery store. When Nancy said in a very low voice, “Ho, Ho, Ho,” as we passed the Green Giant peas, Jayna almost dumped the shopping cart from a fit of laughter. Nancy stroked a fire hydrant outside the market like it was a young child, took three successive deep breaths through her nose when we entered a Starbucks coffee store, and gladly sampled five different ice creams at Baskin-Robbins before making a choice of flavors for her two scoops.

  In the past, this would have been pretty unexciting stuff—but not today.

  The most telling event of the afternoon happened just before we returned to the apartment. Jayna turned off the car ignition and dashed into the apartment for a “nature” call. By comparison, Nancy slowly exited our Subaru, exhausted but not in any way worse for the wear. Luckily, an old iron bench sits along the sidewalk leading to our apartment door. Nancy plopped on its wooden seat and as she turned to me said, “Just one more minute. I want to take a few more breaths of this fresh air. Can you smell the pine needles?”

  Indeed, I could—but before I could answer, Nancy pointed at her feet.

  “Look . . .” she exclaimed.

  I didn’t see anything unusual, except Nancy slipping off her left sneaker and cautiously removing the wool sock.

  “What are you doing?” I asked in alarm. “You’ll catch a cold.” (I could hardly believe my own words, knowing that temperature has nothing to do with cold germs.) I started to laugh at myself but then realized what Nancy was doing.

  “It’s still alive!” she exclaimed in barely a whisper that made me wonder if she was speaking to me or just to herself.

  As she talked, Nancy touched a single blade of green with her big toe. The shoot stood amid a large clump of grass colored the brown of winter. When I looked across the lawn in every direction, I saw only brown. After all, it is the end of January.

  Nancy carefully put her sock and sneaker back on and extended her hand toward me. I pulled her directly into my arms and surrounded her with a huge hug. We went inside without speaking another word.

  Summary: The fevers, weakness, and worries of Nancy’s last hospitalization are finally fading. She surprised everyone today, wanting to venture outside the apartment. Nancy greatly enjoyed rediscovering a world she hasn’t been able to be part of for a long while.

  Best,

  Winnie

  A Shining Light

  January 24, 10:44 p.m.

  Dear Friends and Family,

  It has been a while since I’ve written to you twice in one day, but today deserves and warrants a second letter.

  Earlier this afternoon, when Jayna and I arrived back at the apartment, Nancy fell quickly into a deep and abiding sleep. So as not to wake Nancy, we quietly giggled for a few minutes about Nancy’s grocery store antics and then I headed up the mountain to work the afternoon shift at the clinic. I had only been in my office for about twenty minutes when the phone in my pocket began vibrating. Luckily, I was not in a patient room. Jayna was on the other end.

  “Hi, Dadder. You have a minute?”

  In reality I didn’t. I was already behind, with patients in every room.

  “Sure, sweetie, what’s up?”

  “I just got off the phone with Delia. You remember her don’t you, Dad.”

  “Of course, she’s your best friend! How’s she doing? Is she still liking Vassar?”

  “More than ever, Dadder. She just got her senior thesis back. And guess what? She received a commendation—that means she’s the best in her major, English.”

  “Wow, Jayna that’s wonderful. Next time she calls, tell her I’m so happy about her achievement. And give her my congratulations.”

  I couldn’t help but glance at the wall clock wondering, “Where is this going?” I didn’t have to wait long as I almost immediately heard uncontrollable sobbing.

  “Dadder, do you . . . do you think . . . do you think I would have gotten a commendation?”

  I gripped the phone more tightly and ducked into the supply room. I didn’t want anyone to see my face. After leaving Peru on a single day’s notice, after her boyfriend was not allowed into the United States, after transferring to Utah for her senior year, Jayna was experiencing the combined weight of the world on her shoulders. All sorts of feelings from dedicating eight months of her life to our family had reached their apex and were finally coming to the surface.

  “Of course, Jayna. You had a 3.9 GPA before you transferred to Utah. You have a 4.0 from your first semester here at the university. Are you missing Vassar, Jayna?”

  I could hear more sobbing, which reverberated throughout my body. My heart plummeted and I immediately found that I was faulting and questioning myself.

  Why couldn’
t I have done more?

  Why had I messed up again?

  Why don’t I give Jayna the attention she needs?

  “I’m sorry, Dadder. I shouldn’t burden you.”

  “Jayna. I’m so sorry. I’m so very, very sorry. Your life has been turned upside down. You’ve had to sacrifice so much. I wish that your mother and I had been more insistent that you go back to Vassar. I wish you were there right now . . .”

  Jayna didn’t respond for what seemed like a long time. When she did, she had regained her composure: “It’s all right, Dadder. Mom means more than anything else. It was just hard for a moment.”

  I bet it was, my sweet, sweet daughter. You’ve been incredibly strong and incredibly helpful. You have been a shining light to your mother during the darkest times. You’re able to make her laugh when there was little reason for laughter.

  “Hey, Jayna. I’ll tell you what. Let’s go out and celebrate—for Delia and for you.”

  “That would be great, Dadder.”

  Life is slowly getting back to normal in the Winn household. We are starting to reflect on the past—and even daring to contemplate the future. The fog of Nancy’s disease is slowly lifting. It is a happier time for us. But there is a toll paid by the family of anyone with a chronic or life-threatening disease.

  “Jayna, consider this. The fact you’re thinking about Vassar means Mom is really getting better. I’ll see you in a few hours when I get off work. We’ll tuck Mom in and then go raise a glass to Delia, you, and Mom.”

  And, of course, to all of you.

  Summary: Day eighty-nine post-transplant and counting. We are three and a half weeks out of the hospital now. Most days are blissfully unexciting. On some days, Nancy barely gets out of bed; others are without a single nap. We watch a lot of TV together, and the other day, there was even a novel on Nancy’s nightstand. Nancy is tolerating full meals regularly. She continues to take baby steps toward recovery. The result of Nancy’s increasing recovery is that Jayna is also looking outward at what, until now, has been all but impossible.

  As always,

  Winnie

  An Age-Old Ritual

  January 29, 11:45 p.m.

  Dear Friends and Family,

  Early this morning, I found myself hesitantly standing outside the door of our apartment’s bedroom so as not to disturb a tableau-like moment that was being shared between Nancy and Jayna. My “two girls,” framed by the doorway, were talking to the full-length mirror. They would point at the mirror and then Jayna would turn her mother 180 degrees. I heard only laughter and delight as Nancy strained her neck to glimpse at her image. Then, unexpectedly, Jayna walked away and returned with a hat in her hand.

  “I like the red one!” Jayna exclaimed, as she angled the hat so its low side nearly hid Nancy’s left ear. “It will be a fashion statement and it matches your new red top.”

  “What about this dark-blue one?” Nancy asked, pulling a round hat with a larger brim from the pile of wigs, scarves, and head coverings spread across the entirety of the queen bed.

  “This one looks great, too. It could work with your navy top. Both go with your black pants or these new jeans.” Jayna held the denim slacks in front of Nancy while both posed in front of the mirror. “Put them on, Mommer.”

  Mothers and daughters choosing an outfit—it’s an age-old ritual that used to drive me nuts. Today, however, it brings tears to my eyes because Nancy is getting ready for a special occasion.

  Despite my effort to be quiet and invisible, Jayna noticed me in the doorway. “Dadder, doesn’t this look good on Mom? Which shirt do you like best?” Jayna holds first the red and then the blue blouse in front of Nancy.

  I look for a place to hide. To me, everything looks good.

  “Jayna, you know better. Your father is clothing ‘challenged.’ Just put both in my suitcase. We’ll make a final decision later.”

  Nancy really means “Jayna’s” suitcase. It’s the only luggage residing in our Salt Lake City apartment. Jayna purchased the valise for twenty dollars in Peru when she hastily returned to the United States. The suitcase’s exterior is green paisley and it had been large enough for Jayna to throw everything in it when she made her mad dash to the airport.

  “That’s too big. We’re only going for one night,” I had been laughingly admonished by Jayna.

  Now it’s a different story. My pajamas probably won’t fit and there may not be room for my toothbrush—especially since Nancy and Jayna continue to hunt for the “right” combination.

  Jayna winks. “You may have to use a Toys ‘R’ Us bag for your stuff, Dadder. I saw one under the sink in the kitchen. Jaret won’t mind.”

  I retreat to the kitchen to retrieve the sack, with the continuing sounds of cheerful banter in my ear. The celebration has already been a huge success and we’re not even in Park City yet for our dinner in a real restaurant.

  Celebration?

  Dinner in Park City?

  A real restaurant?

  Yes.

  Although tonight is still several days before the magical one-hundred-day post-transplant target, two of Nancy’s dearest friends arrived yesterday.

  So why not celebrate early?

  What could be more appropriate than an unexpected return to the mountains?

  What could be more fun than a slumber party at Emmy and Fred’s house?

  A night out is mundane if you don’t have leukemia. A meal at a favorite restaurant might even seem routine if you don’t have leukemia. For us, however, food from a printed menu served by a waitress is an all-but-forgotten luxury. (Our last visit to Ghidotti’s, Nancy’s favorite restaurant in Park City, was the night before her transplant hospitalization in October. At the time, we wondered if Nancy would ever eat in a restaurant again.)

  At dinner tonight, Nancy only tolerated one sip of wine—her taste buds are still not yet ready for more of the “nectar of the gods.” But the food was delicious and she consumed nearly a full portion of linguini with white clam sauce, a dish she longed for during her many months of nausea. Dinner was a delight and a triumph in equal measures. Just weeks ago, a single spoonful was considered a meal by Nancy.

  In the center of our table, there was a flickering candle that sent soft shadows across the fine crystal, elegant silverware, and uniquely shaped dishes. The lighted taper illuminated Nancy’s face. Her blue eyes, highlighted by the blue hat, were filled with joy and jubilant luster.

  I watched Nancy like a mother hen for signs of fatigue, but it was Jaret who commanded her full attention when he described his college classes to Lyn, Nancy’s friend from Marblehead, Massachusetts. There were no heavy eyelids tonight. Nancy even told us about flying into Las Vegas during the “old days” with John, our other out-of-town guest, from Salem, Massachusetts. Lyn and John both flew with Nancy when she worked for TWA. Nancy introduced them to me years ago and they quickly became my friends, too.

  Nancy is so much stronger this past week. Her giggle almost reached the table next to us and her smile seemed wider tonight too—especially when she tasted Jayna’s fettuccine alfredo and sneaked a bite of Fred and Emmy’s clams casino.

  This evening, chills raced down my arms when I realized that I haven’t seen Nancy look this good for a long, long time. There are now fewer wrinkles on Nancy’s forehead, her shoulders sit higher than last week, and she exudes warmth and beauty.

  For a moment, I wondered if it was the hat?

  But in reality, I know the real answer.

  Summary: Two of Nancy’s best friends from her TWA flying days are visiting from Boston. So we turned the evening into an early one-hundred-day post-transplant celebration by going to one of her favorite restaurants in Park City and then having a “sleepover” in the mountain home of Emmy and Fred. Life is good—very good.

  With much love,

  Winnie

  The Mother of Good Fortune

  February 7, 10:56 p.m.

  Dear Friends and Family,

  Nancy has spe
nt the past three days uneventfully staying up into the wee hours, watching sitcoms with Jayna, reading about social anthropology with Jaret for one of his last college courses, and eating several meals regularly—though not as flamboyantly as at Ghidotti’s.

  All in all, Nancy had continued to do well as we approached day one hundred.

  On day ninety-seven after her bone marrow transplant, we returned to the hospital for a regularly scheduled visit. For a full day, we felt like we were school children scurrying from class to class as we completed the many parts of Nancy’s “one-hundred-day evaluation.” (The one-hundred-day evaluation is an intense look at how a patient’s body has tolerated the many medicines received during the bone marrow transplant process. The critical question is, “Have the many pills and IV medicines caused any damage?”)

  We started our sessions with the hospital dentist, who closely scrutinized Nancy’s teeth and gums; moved on to the pulmonary function lab to check the health of Nancy’s lungs; and then headed to the hospital outpatient lab for a “gazillion” blood tests. We next traveled to the transplant lab where a skin biopsy was performed and they did an eye tear-making challenge test that would look for low-grade graft-versus-host disease.

  Later in the day, Nancy underwent her first bone marrow test since the transplant to examine how the donor cells were “enjoying” their new home and to be certain there were no traces of leukemia. She also received a chest X-ray and an EKG and saw a gynecologist. It was a full day—to say the least.

  Quite honestly, we were nervous as she went from office to office. At each stop there was a test. A passing grade was vital.

  “Winnie, when you tell people I’m feeling good, it’s all relative. I definitely feel light years better compared to when I first got sick. I’m considerably improved especially when I think of how tired I was after the transplant. But I’m far from normal yet.”

  As I listened intently to Nancy, I couldn’t help but think to myself: How well I know, my love. But I have seen hints this past week that you are gaining strength.