Night Reflections

by Robert Thomas Winn

  “Actually, tomorrow you should plan on a pass. Leave for a few hours and have a nonhospital meal. The more Nancy eats the better.”

  “Don’t worry, Dr. Pulsipher. I’m sure I’ll eat a lot tomorrow. I even liked the taste of something the other day. What was it, Winnie?”

  “Sweet potatoes.”

  “Well, Nancy,” Dr. Pulsipher responded with a smile, “Plan on lots of sweet potatoes. I’ll be in to see you early in the morning so you can leave here at a decent hour.”

  I endure another long night as I constantly find myself thinking about Nancy’s elevated liver enzymes. I wonder if the lab finding is trivial or the beginning of significant liver damage? I rationalize that Nancy has done so well, better than anyone anticipated. Her meds certainly could be the culprit. Almost every one of them is processed through her liver. But what if it’s graft-versus-host disease?

  Much to my delight, Nancy awakens when the early morning rays touch her face. (Remember, we haven’t closed the blinds in days.) Recently, she’s slept through sun, all the room lights, and most of the noises that emanate from the hallway outside our room. Nancy barely says good morning before she confirms today’s plans: “Winnie, guess what? I actually feel hungry. I might try some ham today. Happy Thanksgiving!”

  “Perfect! Jayna is already at the apartment cooking a ham for you. I can’t wait. Happy Thanksgiving, sweetheart.”

  Dr. Pulsipher and the fellow from oncology interrupt our conversation before Nancy and I have an opportunity to talk about the rest of our day ahead. Not surprising, given the holiday, they are without their normal entourage of students, nurses, and other medical professionals. Even better, they are a full hour earlier than their usual time for visiting Nancy.

  “Good morning, Nancy and Winnie. We’ve decided against you going out on a pass. We want to discharge you instead. Your liver enzymes are nearly normal this morning. The elevation must have been a transient reaction to one of your new medicines. Congratulations!”

  November 29, Thanksgiving.

  It is a day that will forever be remembered in the Winn family archives. Our family will not only be together, but we will be together outside of a hospital. We will breathe nonfiltered outside air and feel direct, unfiltered natural sunlight. Within an hour, Nancy is riding in our car beside me. She has remembered to fasten her seat belt and she is listening to the radio, just like a normal person.

  At the apartment, there is no need for a tray to be placed on Nancy’s lap. She is sitting at a real dining room table. Her bed is actually in its own separate room. No more bells or buzzers. No interruptions. No IV pole.

  Freedom.

  Nancy eats her home-cooked ham on real dishes. She adds salt to the sweet potatoes from a saltshaker that is not disposable. Her silverware will go into a dishwasher rather than a trash basket. She asks for seconds on sweet potatoes that are served from a dish on the table.

  Thanksgiving.

  After just under a month and a half confined to a single hospital room, our holiday meal together is as notable and enjoyable as the step through the revolving hospital door that we playfully went around in twice as we were leaving today.

  Still I can’t help but wonder if everything will be “normal” now?

  It is too early to know.

  But there is one thing we know for sure: we know that we have many things to be thankful for.

  P.S. Alain, Jayna’s Peruvian boyfriend, was denied entry to the United States for the second time. We are unable to figure out why. Jayna has had quite a year, but she too has much to be thankful for.

  Summary: Happy Thanksgiving to each of you. Believe it or not, we are no longer in the hospital. We enjoyed a fitting holiday celebration after forty-three days in the hospital. Nancy is thirty-three days post-transplant and still has no serious infection and no significant organ damage. She does have a functioning, brand-new immune system. So today I “froze” a snapshot of our family with the camera that is my memory. Today was a Thanksgiving that none of us will ever forget. We have much to be thankful for—Nancy’s present health and our deep and abiding friendships with each of you.

  Fondly,

  Winnie

  A Jumbo Pillbox

  December 4, 1:06 a.m.

  Dear Friends and Family,

  At times, the last six months have played like a horror movie or, at the very least, a recurring bad dream. Each and every day, we have faced relentless fears that are continuously lurking in the shadows. Our emotional highs and lows switch places then are swapped again and again. Our unrealistic hopes are frequently vanquished by the harsh reality of Nancy’s disease. We have lived day to day, hour to hour, and sometimes even second to second.

  As a result, we analyze and reanalyze every word uttered by our medical team. We worry each time Nancy has her blood drawn. We hold our breath when Nancy’s temperature is taken, and we don’t sleep when she has the cancer-checking bone marrow biopsies done. Each day contains its own drama, so we savor even a few hours of blissful sleep as an escape from what is an almost surreal existence.

  But this week, with being far away from the constant reminder of residing in the hospital?

  I must be honest.

  Our days have been resplendently dull.

  On most days I wonder, how can a patient with arthritis do it?

  I wonder, how does someone that is a touch forgetful get through the day?

  How about a person with poor vision?

  The answer to all these questions—the pillbox.

  On the day we were discharged recently, I made the compulsory trip to the hospital pharmacy. Since it was midmorning on Thanksgiving Day, I had the entire place to myself. I should have known what would happen.

  “Oh, so you’re Nancy Winn’s husband. I’ve been expecting you. Her order’s been ready since yesterday. We were so busy we didn’t have one spare moment to breathe. We spent a considerable amount of time getting your order ready and then you didn’t come.”

  Yes, my hair was disheveled as usual. And no, I hadn’t showered or changed clothes since spending the night on my chair in Nancy’s hospital room, where I had fallen asleep before I could get up and go to the rollaway bed. The “look” the short, round-faced, redheaded pharmacist gave me above her thick reading glasses made me want to hide. Her face was dripping not with turkey gravy—but with disdain.

  “It’s not our fault,” I wanted to say. “I would’ve been here yesterday, all cleaned up and on time, but our discharge was postponed—by our doctor, not me. I was devastated and worried yesterday, so I didn’t clean up today because I want to get out of here before our doctor changes his mind again.”

  I knew whatever I said would fall on deaf ears. So I settled for, “Yep. That’s me. I go by Winnie. Do you have my wife’s pills for us?”

  The pharmacist rolled her eyes in concert with a slow shake of her head. She straightened her nametag, which read in bold, black letters “Cynthia.”

  What I really wanted to say was, “I know, Cynthia. I know, it’s Thanksgiving Day and you’re working. But have a sense of humor. It’s Thanksgiving and we’ve been in the hospital for almost a month and a half. Can you just take a deep breath?”

  “These are your wife’s medicines—the entire bag. And it’s heavy.” She plopped it on the counter with a large thud to make her point.

  She was right. The bag was filled right to the top. Some of the items in it were quite large, like the box containing Lidocaine numbing patches for Nancy’s persistent sciatic back pain. Mostly, however, the bag contained pill bottles of varying sizes. There were lots and lots of them.

  It was a good thing the pharmacy was empty. The next twenty-five minutes were spent discussing side effects. Cynthia never looked up once and she barely took a breath between holding each pill container up near my face as she read from her many sheets in her never-ending monotone. After the last one, she shoved the bag and a piece of paper across the counter: “Sign here.”

  After a “
thank you” that was not acknowledged, I grabbed the bag and cradled it like a football under my left (dominant and stronger) arm. Somewhat unsettled by my pharmacy experience, I didn’t mark the significance of my final exit through the hospital’s revolving door like I did when Nancy and I went around twice before I took her to the apartment and then returned for the drugs. No wonder. My head was spinning like the door. How will Nancy take all these medicines? (As I shared with you previously, she gets queasy from a single sip of water.)

  When I arrived back at the new apartment, we had a long and warm four-person family hug with Jayna and Jaret, who had been busy preparing dinner. Jayna looked at her mother lying on the couch and said, “Go to sleep in your bed, Mommer. That one is mine.”

  Jaret added, “I’m setting the table, Mom. You and Dad both look tired.”

  He was right. So I tucked a weary but happy Nancy into her own nonhospital, queen-size bed. The down pillows that cradled Nancy’s head showcased nonwhite pillowcases (two blue and one pink). The bed was a simple luxury even if it didn’t adjust into eighteen unique positions like those in the hospital.

  I kissed Nancy’s shiny head and then gently stroked her bald dome until her eyes closed and there was a steady rise and fall of her chest. In contrast to the blue and pink pillowcases, the hairless part of Nancy’s head was almost as white as her teeth. It was a beautiful contrast, one that I had not noticed surrounded by the hospital room’s white pillows, white blankets, and white walls during the last month and a half. I thought to myself, “How nice to have color back in our lives.” And then I whispered, “What color will your hair grow out to be this time, Nancy?” Nancy didn’t answer.

  With my first task accomplished, I celebrated by quietly pulling a chair up next to the bed and propping my feet up next to Nancy’s. It suddenly occurred to me, “How delicious to do nothing but watch Nancy sleep.”

  It’s just too easy to adjust to no interruptions.

  Or cleaning floors.

  Or taking vital signs.

  Or inventorying equipment.

  Or giving Nancy her meds.

  Meds, I thought with a jolt?

  The brown bag I had placed in the corner when I arrived at the apartment earlier looked back at a face that was just about overwhelmed. Reality set in quickly and I opened the nightstand drawer and pulled out the recently purchased, four-times-per-day, “largest-in-the-Western-world” pillbox. This particular organizer is capable of holding a full week’s worth of medicines. I slipped out of the bedroom and sat on the couch, arranging all the pill bottles to the left of the pillbox on the coffee table in front of me. No doubt we needed the Super Walmart of pillboxes. The coffee table barely had room for the water glass Jayna brought me. As she set the tumbler down, she raised her eyebrows and commented, “It looks like I have the easy job today, Dadder.”

  The next sixty-eight minutes were occupied putting nineteen different medicines into slots representing the four time periods Nancy is supposed to take her pills each day.

  Morning.

  Lunchtime.

  Dinnertime.

  Bedtime.

  When I made my final count, thirty-three pills per day had found a home in Nancy’s weekly pillbox. Thirty-three. There have been entire years when I haven’t taken thirty-three pills. From the tiny blue one that will probably land on the floor more often than not to the capsule that is just a tad smaller than a hot dog, I carefully deposited each pill into its designated space. With each pill in its labeled time slot, I rechecked each niche a second time. Not surprising, I discovered I had made four mistakes.

  A rustling of blankets emanated from the bedroom. After a moment of silence, a sleepy-sounding voice could be heard: “Winnie, is it time for me to take a pill?”

  For the foreseeable future, there is an easy answer to Nancy’s question.

  “Yes, sweetheart. I’ll bring you the entire pillbox.”

  Summary: Nancy is single-handedly keeping the pharmaceutical industry afloat financially. Luckily, we found the world’s largest pillbox to organize a full week’s worth of her medicines at a time.

  All the best,

  Winnie

  Ask and You Will Get Answers

  December 5, 5:51 a.m.

  Dear Friends and Family,

  I had a long phone conversation the other day with our dear friend Patricia. She asks many of the same questions that many of you do, so I thought I’d repeat some of my answers for today’s update.

  “How’s she doing?”

  “It’s remarkable to be discharged thirty-three days after an unrelated donor transplant, even for a younger patient. She’s come such a long way and been through so much. Nancy has had four separate extended hospitalizations. But now, she’s getting a little better each day.”

  “Will she need to go back a fifth time?”

  “We don’t know—that’s why we’re required to live close to the hospital in Salt Lake City. Each week, we return to the hospital several times. Fortunately, we only go to the outpatient clinic. We hope never to be admitted to the hospital again. We hope no problems come up during this phase of Nancy’s recovery.”

  “Any problems?”

  “Yes. Though we’re out of the hospital, there are still challenges. Nancy has her donor’s immunity now. But by design, it’s being suppressed to ease it into her body. It’s like being able to only drive a new car under sixty-five miles per hour for the first 1,000 miles. You might call it the ‘break-in’ period. So with Nancy’s new immunity not yet at full strength, infection is still a major concern. It’s nowhere near the way it was before the transplant when she had zero immunity, but Nancy still needs several medicines to protect her against germs. She even has to wear a mask if she goes outside the apartment, which makes it hard to go to a restaurant or movie.

  “During the next two months, the immunosuppressing medicines she is taking will gradually be withdrawn. As that happens, Nancy’s other major risk comes into play. It’s called graft-versus-host disease, or GVH. While the donor white blood cells were a 10/10 match with Nancy’s, they are still designed to attack things that are foreign. Everything in Nancy’s body is foreign to her new white blood cells. Once she is off immunosuppressants, the donor cells might attack her skin, bowel, liver, or other organs.”

  “When will you know if she has that graft-versus-host thing?”

  “Nancy is thirty-nine days post-transplant. By day one hundred, we should have a pretty good idea. We’ve been told to expect some graft-versus-host disease, but we hope for a minor amount. Seventy to eighty percent of patients Nancy’s age gets some graft-versus-host.

  “Finally, even though Nancy has survived four long hospitalizations for maximal chemotherapy and the bone marrow transplant, there is always the chance that her leukemia will return. It will be a couple of years before we can feel safe that she is cancer free.

  “All that said, Nancy is making steady progress. She is able to eat more at each meal. She is increasing her exercise one minute every few days. She is waiting for her body to heal, so each week there might be fewer pills in the world’s largest pillbox.”

  P.S. For those who have asked for our Salt Lake particulars: Nancy Winn, Apartment 3, Sugarhouse Village Inn Apartments, 1339 East 2100 South, Salt Lake City, Utah, 84105. I still travel to Woodland at least once a week for the mail, to water the plants, and to pick up clothing that Nancy now wants to wear. We have a phone in our apartment, but we haven’t bothered to even find out the phone number. However, our mobile phones do work in the apartment. Nancy actually does answer her phone on occasion, but even when she doesn’t, she always smiles when she listens to your messages.

  Summary: Psychologists list “moving” as one of life’s major stresses. The relocation to our apartment in Salt Lake City has been just the opposite. Nancy’s enjoyed a quiet, peaceful period since leaving the hospital. She is “homing in” and getting used to being normal. Each day, I see increased well-being—both physically and mentally.


  With much love,

  Winnie

  The Merry-Go-Round Goes Round

  December 11, 8:50 a.m.

  Dear Friends and Family,

  I realize my letters have recently been less frequent; when Nancy came home to her “real” home, I didn’t expect to write you for weeks. I had hoped to spend all my nonwork time assisting Nancy in her recovery. Quite honestly, I thought most of what was happening in our corner of the world would be blissfully boring. Mostly, my plan was to sink my teeth into transforming the Salt Lake City apartment into a proper “second” home.

  To me, it’s more than a bit amusing how I now view time and space. In the past, I would never have entertained transforming a hospital room into “home.” Or that I’d even consider making a “temporary” apartment into a place for celebrating the holidays and life in general. Simply, I was used to one place to hang my hat and call my home. During all the years I spent summers in Yellowstone, I never once hung a picture on the wall. I’m almost embarrassed to admit that sometimes I never even unpacked my suitcase to use the chest of drawers.

  But now?

  I am so much more anchored to the present. Or at best, the very near future. Even as a doctor, I never quite realized it. Cancer (or any other serious disease) totally changes your perspective. Cancer forces you to be flexible. Yesterday is a great example of what I am trying to share with you—just when I had scheduled to spend a full day of being at home, events conspired to alter my plans. When I walked in to the house, Nancy was on the phone about a more important matter. She wasn’t making calls about holiday decorations and preparations.

  “Nancy, we probably should have you run up to the hospital for a few tests. Yes, right now. Do you want me to talk to Winnie?”

  “There’s no need, Adam. That’s why we rented the apartment in Salt Lake City—to be close.”