Night Reflections

by Robert Thomas Winn

  Emily Post doesn’t have a chapter on how to act at a bone marrow transplant party. We sang “Happy Birthday Baby, Baby” several times and small parts of any other song that more than two of us knew. Jayna even made a video of our second rendition of the transplant shuffle, though Nancy danced with her arms only from her bed, the rest of her body beginning to ache. We made toasts (with water), and everyone but Nancy ate the chocolate “birthday” cake that I brought for the occasion, as well as the candy and cookies Jayna had picked up at the store.

  By the time our neighbor’s nurse stuck his head in our room and good-naturedly threatened, “I’ve already given my patient two ‘sleepers.’ Can you tone it down just a bit?” we were all emotionally spent and ready to settle down. Chris returned to other duties, and Linda and Jayna kissed Nancy good night and departed to our Sugar House (Salt Lake City) apartment.

  When our room was empty and it was just Nancy and me, we did something we had not done since May 29, the day of Nancy’s diagnosis. We discussed the future. We talked about what we will do once Nancy is well. We talked about trips that we’ll take together. We talked about restaurants we’ll visit. And most importantly, all the people we’ll thank from the bottom our hearts—each and every one of you.

  Summary: Last night, just after midnight, Nancy received her new bone marrow. We had a very special party to celebrate her transplant “birthday.” If all goes well, we look forward to many, many more.

  All our love,

  Winnie

  The One Redeeming Quality of a Crocodile

  November 13, 5:13 p.m.

  Dear Friends and Family,

  When I went to work yesterday, my longtime medical practice partner Chris Hays handed me a hatbox wrapped in Charlie Brown’s Snoopy wrapping paper and a frilly blue bow. Over the past several weeks, I’ve been spending day and night in the hospital except when in the office, and I don’t readily know one day from the next. Everything is a blur. So I quickly checked my “mental” calendar.

  No, it wasn’t Christmas.

  No, it wasn’t my birthday.

  It wasn’t even something obscure like “Doctor’s Day.” It was simply an act of kindness. Predictably, I was speechless and could barely get my thank you out without accompanying tears.

  There were two pairs of new shoes inside the box, one for me and one for Nancy—Crocs. If you’re not familiar with them, they are basically rubber clogs. Chris told me they are the “rage” and that they’re everywhere. He went on to explain that Crocs are available in seventeen different colors. For me, Chris chose sage green. To my eye, they were more like the color of garden peas. (Unfortunately, I hated peas growing up. And I still do.)

  Crocs look a little like Swiss cheese except for the soles. So, my new shoes are pea green and full of holes. They are definitely not a fashion statement. On the positive side, Crocs have one extraordinary redeeming quality: they “feel” really good. The holes allow your feet to breathe. And the rubber bottoms? Those flexible, spongy soles make them exceptionally comfortable. For that reason, my pea-green, hole-filled new shoes now reside in Nancy’s hospital room closet. I haven’t given Nancy hers yet, as she declared a moratorium on presents last week because she doesn’t have the strength to respond with what she calls a “proper” thank you. But she really likes mine and was quick to observe, “Chris is a really close friend. He knows your favorite color.”

  Summary: We continue to be showered with love and kindness. Yesterday, Chris Hays gave me some Crocs. I have needed a new pair of shoes and will wear them comfortably as I stand ever vigilant and watchful over Nancy.

  Warmly,

  Winnie

  The Angels Were with Us Last Night

  November 13, 7:00 p.m.

  Dear Friends and Family,

  Earlier, I abruptly stopped writing my last letter because Nancy’s “awake” times are now measured in minutes not hours. A little while ago, Nancy was awake only for about twenty minutes—normal for her over the last week or so. She has had a difficult time as a result of the chemotherapy she received before the transplant. The past week or so has been really challenging. And last night was one of those nights.

  “Winnie, I need to go again.”

  Over the past two hours, Nancy had made numerous trips to the bathroom. (Actually, about every fifteen minutes.) It’s a side effect of her medicines. She is taking three separate types of drugs to combat germs.

  Antibiotics.

  Antivirals.

  Antifungals.

  Each drug trickles into her body from a separate IV bag. Nancy is not allowed (nor does she want) to eat or drink anything. I find myself wondering if the medicines are the culprits causing havoc. I ask myself, “How can she have such a voluminous output when she feels the way she does each day?” Though, by 2 a.m., I stopped worrying about the causes. All that matters is helping her make it through the night.

  “Winnie, it’s time again.”

  I slip Nancy’s feet into her fur-lined slippers and offer her my elbow for stability. I slide her IV pole carefully to the bathroom door while protecting the three IV lines that connect from the pole to the IV site in her too-thin chest. After situating her in the bathroom, I close the door and pace outside.

  When the time that has passed seems longer than usual, I open the door. I can’t believe my eyes. Nancy is there, but she’s kneeling on the floor next to the toilet—cleaning.

  “Sweetheart, you can’t do that. You have no immunity. The germs could harm you.”

  “I’m only trying to get the worst of it.”

  “Stop! Please, let me do it.”

  Nancy doesn’t argue. She’s totally exhausted, but she is still thinking of others.

  Quickly, I hurry into the bathroom to grab her before she collapses on to the floor.

  After Nancy’s next two “visits,” I play housekeeper once Nancy has been returned to her hospital bed. And I do discover another great thing about my Crocs. They are easily cleaned in a sink with soap and warm water. They dry fast, too. (Chris, I find myself liking the color more with each passing hour.)

  Our nurse, Erlene, finds me on my hands and knees cleaning the bathroom floor as she enters our room for the third time, bearing Nancy’s nighttime medicines. After hearing my report, her eyebrows nearly hit the ceiling: “Oh my, Nancy. We do appreciate you wanting to help, dear. But cleaning the bathroom is not your job. It’s ours.”

  My sigh is audible and I welcome the news wholeheartedly. Nancy doesn’t argue with Erlene like she does with me. Erlene carefully places the drugs she is carrying on top of the medicine cart. She points at Nancy, and then me: “You are the patient, Nancy. Your job is to get better. And Winnie, you are the caretaker. You are not responsible for washing and scrubbing the bathroom floors.”

  “Well,” I think to myself and almost say out loud, “I’m glad that’s now clear. I might have forgotten who has the leukemia and who the caretaker is.” Nancy scans the room for a place to go into hiding, but not finding one, nervously giggles. Erlene and I join her.

  “Good you can still laugh, dear,” Erlene adds, while hanging the next “bag in a long line of IV bags” that will be replaced tonight. “I bet you already know this, Winnie. Your wife is amazing. Everyone who’s taken care of her loves her.”

  Surprising news?

  No.

  Almost every hospital worker who has assisted and helped us over the past five months has told me Nancy is his or her favorite patient—of all time.

  “My dear, dear Nancy. We all want you to get well, but you can’t risk that bathroom germs could get in the way of your recovery.” Erlene turns on one of the small lights above Nancy’s bed. It is one of the six different lights surrounding Nancy that allow her to have a “little” or “a lot” of light. “You look achy tonight, dear. Let me get you an extra dose of pain medicine. It’s also time for your nausea medicine. Would you like that, too?”

  For the next twenty minutes, Nancy’s snoring filled the room an
d then she woke up for her next bathroom visit. Afterward, while tucking her back into bed and kissing her head lightly, she opened her eyes wide. (It’s almost as if Brad Pitt, her favorite movie actor, had just walked into our room.) She grabs my hand and points in the direction of the door, “You have to give them a tip, Winnie.”

  “I don’t know that the caregivers are allowed to accept tips, Nancy.”

  Not that each and every one of our nurses doesn’t deserve something.

  Uniformly, our nurses have been spectacular.

  Uniformly, our nurses have been caring.

  Uniformly, our nurses have been attentive.

  Uniformly, our nurses have been knowledgeable.

  And like tonight, uniformly helpful.

  Erlene was stern this evening. Yet she has a playful and a kind touch. She turned a tense situation into a moment of amusement. She obviously understands how hard it is for Nancy to know that her body has changed, to have parts not work, and to lose her privacy. In reality, Erlene does deserve a tip.

  “Please, Winnie. Please give her a tip right now—before she and the others leave. I hear them out in the hall.”

  As I search my briefcase for my wallet, I notice Nancy’s head bobbing up and down. I stare at my bride in disbelief and then realize Nancy is dancing to music that only she can hear. I don’t hear a single note.

  “Nancy, I think Erlene and the rest of the nurses aren’t in the hall right now. They are somewhere else helping other patients.”

  Nancy wrinkles her forehead and shrugs her shoulders: “Don’t be silly, Winnie. You can’t tip nurses. I mean the lady who put on the magic show.”

  “The magic show?”

  “Yes. It was my favorite part of the entire performance—the last act of the circus. Right over there by the window.” Nancy points to the window and I hear a childlike laugh that warms my heart. “Didn’t you see it, Winnie?”

  A circus?

  “I missed it, sweetheart.”

  “Darling, what I think you saw was something like a dream.”

  “I think what you saw, Sweetie, was caused by your medicines.”

  “Honey, I think what you saw was caused by the extra pain medicine and the nausea medicine that were given to you at the same time.”

  Nancy replied matter-of-factly, “Oh, am I hallucinating like that other time?”

  As Nancy rubbed her beautiful bald head, she added, “Whatever, I’m really sorry you didn’t see the little boys and girls dressed as angels. They were the best. They were flying around the room. You didn’t see them?”

  I simply smiled and kissed her head again.

  It was a long night, but despite Nancy’s discomfort, despite feeling totally vulnerable, despite the fevers, despite the nausea, and despite the pain, Nancy (with all her inner strength) still finds ways to joke and have a little joy. And later Nancy vividly described the evening to Jayna and one of our favorite nurses, Colleen: “Their costumes sparkled, Jayna. Green, blue, and red sequins glimmered in the three spotlights coming from different sides of the room. You know, I’m still not sure the angels weren’t real.”

  And while I’m not sure either, many of you have mentioned sending angels to watch over us.

  Surely, the angels were with us tonight.

  Summary: We are in a difficult period where Nancy’s body is struggling. Still her spirit is strong—as is your continued support. I am eternally thankful for both.

  Fondly,

  Winnie

  Nancy Has Begun Drinking Again

  November 17, 10:37 p.m.

  Dear Friends and Family,

  “Dad, great news.”

  Jayna is at the hospital and I am, unfortunately, at work. It’s just shy of noon, the time typically that Nancy’s medical team makes their daily rounds.

  “Dr. Peterson was just here. He thinks Mom is really improving. He said she could have ice chips and water—up to 500 cc per day, which is a little less than a can and a half of soda. She is sooo excited to be able to drink something!”

  “That’s fantastic!” I all but shout into the phone as if Jayna can’t hear me. Nancy has been continuously thirsty this past week. She has constantly been denied water because her gastrointestinal system has been so fragile. Her lips have multiple painful cracks even though we have been applying emollient almost constantly. “I can’t even imagine going an hour without drinking, let alone a week.”

  “And guess what else, Dadder? Mom’s making white cells again. Finn Bo says it’s the beginning of Mommer’s engraftment.”

  It may surprise you, but sometimes I’m too emotional to speak. So quite honestly, I said nothing in response to Jayna’s wonderful news. However, amazingly Jayna didn’t miss a beat.

  “It’s OK, Dadder. We’ll talk more when you get here tonight. And we’ll celebrate—all three of us. We’ll have a water toast.”

  Part of my toast will be for all your support. Thanks.

  P.S. I may not have mentioned it recently, but Nancy has not read any of my letters. She does know that I try to keep our extended family and her many supporters informed, and occasionally she urges, “Please don’t include that in whatever you’re writing about me.” Mostly, she ignores me while I wait for her to open her eyes or when I awaken in the middle of the night. All she occasionally sees is that I am busy on my computer. (I can only hope that if any of my writings are too graphic or too personal, you’ll set my letters aside quickly and permanently.)

  Summary: Nancy is finally coming out the other side. This week Nancy hit rock bottom, but she now appears to be on the upswing. Nancy is making new white cells. (Something that the doctors call engraftment is beginning.) She will soon be armed with new immunity and her new A-positive blood type. We are also expectantly awaiting her gastrointestinal tract to function properly again. With each passing day, Nancy feels stronger and better.

  With much love,

  Winnie

  The Two Unspoken Words

  November 20, 11:45 p.m.

  Dear Friends and Family,

  I’m frequently asked, “Why are you working?”

  The answer is simple.

  My days at the office continue to be a source of great personal satisfaction and, on some level, an escape for me. My partners, along with the rest of our amazing staff, sincerely care about Nancy. Many of them have known her for more than a decade. They also deeply care about me. Each and every day, they gently offer encouragement and support. They have learned not to ask me too much because they have learned that I write more easily about Nancy’s and my situation than talk about it. They treat me normally except for the fact that they have assured me that it is all right if I have to leave suddenly or not come in to the office at all.

  But then, there are my patients.

  In a small town, word spreads quickly and pervasively. An incredible number of my patients now seem more intent on showering me with love than on having their medical complaints examined. Each day they bring me food. Each day they bring me presents. And almost every day they tell me their stories about loved ones who have also had a serious disease and survived.

  When I take a moment to reflect on all those around me, I realize that every good thing I have ever done in my life has come back to me tenfold. The decent and noble side of humanity humbles me. As a doctor, it makes it all the more meaningful to me now when I can help others. The only trouble I have every now and then is when a patient inquires about Nancy. It is not uncommon for my bottled up emotions to spill out uncontrollably. Often it is one of my patients who is handing me the box of Kleenex or putting a hand on my shoulder rather than the other way around.

  I don’t mean to say that some days are not challenging.

  Sometimes the rollaway cot in our hospital room doesn’t provide me with the best night’s sleep and I am physically tired when I get to the clinic office. Similarly, I feel the same way on those days when I have to take my shower at the clinic because the one at the hospital is being cleaned or fixed at
the time I would normally use it. And then there are those days when I arrive at work only to discover that I have forgotten to bring clean socks or a suitably matching shirt. In reality, living at the hospital half time is not the best match with my job. But all things being equal, my greatest difficulty is when my mind and heart are still at the hospital even though my body is at the office.

  Today was a day when I really wasn’t at the clinic.

  Why?

  I never truly know. Sometimes I think perhaps it’s because I’m at the end of a difficult period. As an example, today was my fourth consecutive day working. I found that I was instinctively calling the hospital every few hours.

  “Things are fine, Daddy. Mommer is sleeping. She feels at least as good as yesterday, probably a little better. The doctors even advanced her diet. She’s now allowed to drink up to 500 cc, and she can finally have something besides plain water. She just had her first sip of 7-Up. She smiled and said it was like sipping champagne.”

  After work, during my late-afternoon ride to the valley, I didn’t ring Jayna, as is my habit. I felt like I had pestered her enough with my calling almost hourly. Instead I called Nancy’s brother, sister, mother, my sister, and two of Nancy’s best friends. (I have retrofitted our Subaru with a Bluetooth speaker so I can keep both of my hands on the wheel.) My daily drive to the hospital, thirty-five minutes from my Park City office or an hour from Woodland, is the best time to keep in touch. Everyone appreciates the news—especially today.

  “I’m on my way to the hospital from work for an overnight with my bride,” I tell them. “Jayna’s been there all day. She says Nancy’s a little better. Nancy’s had three days in a row of good progress. Her new immune system is beginning to work.”

  When I stroll through the door, I announce my normal greeting, “Hello, my sweet girls. How’s everyone doing?” I gesture and immediately wave a sign of my love to Nancy before turning to Jayna, who is sitting on the bed by the window. Instantly, I am frozen in my tracks. Jayna is hunched forward and she is sobbing uncontrollably.