Night Reflections

by Robert Thomas Winn

  “I’m not complaining. I just don’t want our friends to think I’m ready to go out every night. I don’t want them to wonder why I may not have written back or returned calls.”

  “I understand, Nancy,” I said out loud this time. “I think they do, too, but I’ll do better. I’ll tell them you’re a three or a four.”

  We both enjoyed my “inside” joke. (Nancy is constantly asked to quantify her continuing leg pain on a one-to-ten scale. She always answers “a three or a four,” but we jest about her saying “twenty-five” or “minus seven” to see what kind of response she is able to provoke.)

  Our conversation was interrupted as we entered the Blood and Marrow Transplant Clinic where Nancy would have the all-important bone marrow test. Laurie, the nurse, gave Nancy a hug and asked about the kids and Katie, the clerk, walked over to greet us. “It’s good to see you, Nancy. Have you enjoyed your time at the apartment?” Before Nancy could answer, Carly, the medical assistant checking in Nancy, frowned after reading the thermometer she had just removed from Nancy’s left ear. She quickly grabbed a different thermometer and tested Nancy’s right ear again.

  “You did tell me you’re feeling good didn’t you, Nancy? You haven’t had a cough or diarrhea?”

  Nancy shook her head, and I dropped mine lower.

  “Well, Nancy, it appears you have a fever. 101.5 degrees. Let me get Malinda.”

  Malinda was the nurse practitioner in charge of the clinic. By the time she arrived, Nancy’s temperature had been retaken in both ears, plus a glass thermometer was placed under her tongue. Each thermometer registered similar values. Elevated—averaging 101.6. Melinda reviewed the history, listened to Nancy’s lungs, and immediately ordered more tests.

  I sat somewhat in a daze and stupor. I understood and followed each step being taken by the medical staff, but it still felt dreamlike and surreal. (No, actually it felt more like a nightmare.) I placed the back of my hand on Nancy’s forehead and was given the answer directly. Nancy felt hot. The thermometers were accurate.

  “I’m sorry, Nancy and Winnie. To be safe, we’ll need to put you back in the hospital. You look so good, too. It should be a short visit.”

  Did we celebrate one hundred days too early?

  Is this the beginning of a serious infection?

  How many steps backward have we taken this time?

  Numerous questions raced through my mind as we waited twenty-four hours. Fortunately, a culture of Nancy’s blood revealed that she had a bacterium—staph.

  “Isn’t the staph germ the one that kills people, Dr. Ford?”

  Not the question I wanted her to ask, but that’s Nancy—ever straightforward.

  “There are many different types of staph, Nancy. You have a common one that lives on the skin and, in all likelihood, contaminated your central IV line. We caught it really early, even before you had symptoms. I think it will be easy to treat.”

  We were fortunate this week.

  Yesterday, after only two days on the fifth floor of University of Utah Hospital, Nancy returned home to our apartment. We didn’t decorate her hospital room this time, and Jayna didn’t sleep there a single night. (I did, however.) Nancy is back on antibiotics into a new IV site, but she continues to feel good.

  As we were leaving the hospital, she whispered, “At least a three or four,” in my ear as we exited into the sunshine and fresh air. Our brief hospital stay serves as a reminder that Nancy was very sick in the past (twenty-five on the one-to-ten scale) and that, even now, she remains fragile. Although today marks exactly one hundred days from the transplant, our journey is far from over.

  So what happens on day one hundred?

  Day one hundred is a significant milestone. Twenty percent of patients with Nancy’s condition don’t make it to day one hundred. Nancy’s brush with a systemic infection three days ago is a brutal reminder. I try not to dwell on what could have happened. We are so blessed to have had a coincidental hospital appointment. For once, luck was on our side.

  Obstacles can still arise at the snap of a finger. So we will enjoy today to the fullest, as well as every other day that Nancy feels better than a “three” or “four.” But we have to remain ever vigilant.

  Next week, after all the blood work and tests are completed, we will visit with Dr. Peterson to learn the post-one-hundred-day landscape. We already know Nancy will begin six months of decreasing medicine intake. The less her bone marrow is suppressed, the more it can protect against staph and other germs. It will be a balancing act, because more freedom means increased risk of graft-versus-host problems. But an end will be in sight, with the mountains in our future.

  Upon reflection, we’ll postpone the fireworks today.

  Instead we will meditate on where we were, how good things are now, and what’s truly important—friends and family.

  Summary: Three days ago was Nancy’s day one hundred post-transplant. Day one hundred is a significant milestone for any bone marrow transplant patient. Day one hundred signifies that Nancy’s “baby steps” toward recovery are finally adding up. Nancy has undergone multiple tests to see how her body’s organs have fared, and we haven’t gotten any alarming results. It is particularly exciting given that Nancy had another two-day hospital stay earlier in the week that was unscheduled and unexpected. Fortunately, she is celebrating this milestone at home and feeling decent.

  All my love,

  Winnie

  Thoughts on Kissing a Fashionista

  February 18, 6:21 p.m.

  Dear Friends and Family,

  The last time we were required to come to the hospital, Nancy was appearing to have a seemingly healthy day. She had increased strength, improved appetite, and less leg pain. We were absolutely shocked when it was discovered she had a fever. And frankly, it was very depressing and frightening when she was readmitted to the fifth floor. Luckily, Nancy’s hospitalization lasted only two days because the infection had just started and was caused by a germ easily treated by antibiotics.

  It is not surprising, then, that as I dropped Nancy off at the hospital’s front door today and left to park the car, my stomach started to stir uneasily again. The “fifth floor” windows of our last three rooms were all clearly visible to me as I walked from the parking lot back to the hospital. For this reason, I suspect that I will always feel somewhat unsettled when I pass through the revolving hospital doors. (In reality, it actually sucks that I require antacids when I bring Nancy to the hospital.).

  This time, however, the appointment went smoothly. Not only did Nancy look and feel healthy, her exam (including her temperature) was normal.

  “Do you have any questions?” asked the physician assistant, Robert.

  “Yes, we were just wondering if any of Nancy’s tests are back. We were told the bone marrow exam might be done by today.”

  As we waited for a response to our question, I found myself for some unknown reason thinking about “kissing.”

  My first kiss with someone other than a “relative” occurred when I was nine years old. Her name was Andrea, and she had a long, blonde ponytail and lots of freckles. I was at summer camp. We only kissed that one time, and I never saw her again after we returned to our separate homes.

  I didn’t experience the same butterflies in my stomach and tingling in my toes again until I was thirty. It was the first time I kissed Nancy and I was saying good-bye to her in Yellowstone National Park. I remember our kiss as it if it was yesterday, and I also distinctly recollect wondering if I would ever see her again.

  Nancy, in fact, did come back to Yellowstone the next week, and by the fifth time we kissed, it was comfortable and fulfilling, sentiments that have remained unchanged for the last twenty-eight years.

  Bone marrow tests are different from kisses, though.

  As I waited for the test results for the fifth time, it was no less frightening, no less easy, and certainly no less important. Robert left the room for two, maybe three, minutes. Time stood still and each of t
hose minutes was an eternity.

  My wait was exactly like the first time.

  And the second.

  And the third.

  And the fourth.

  Nancy, on the other hand, barely noticed Robert’s absence. Her face, unlike mine, was content, playful, and happy. She busied herself interacting with the TV remote, changing the channels, and adjusting the picture and sound. (I’m certain it felt good for her to control something. For months at a time, she was too weak to even hold a remote.)

  Robert knocked as he reentered the room. Nancy accurately hit the mute button and said with a smile, “You’re back.” The next few seconds were agonizingly long. I searched for a hint in his eyes, his face, or even in his body language. Before I could find a clue, Robert handed me three sheets of lab results as he addressed my better half.

  “Well, Nancy, it’s a clean sweep. Congratulations! Your bone marrow is perfect. No leukemia. And your skin biopsy shows no sign of graft-versus-host disease.”

  Robert discussed the other more routine lab work, but I tuned him out. I bit my lower lip and concentrated. Don’t break down, Winnie, I told myself. Nancy glanced my way and smiled, then nodded her head up and down ever so slightly. She knew. She grabbed my hand and put it between both of hers.

  My bride. You are so much stronger than me.

  “So,” Robert finished, “You will hear from Rachael later in the day about your meeting with Dr. Peterson. He will map out the next steps. Again, congratulations to you both. Oh, and . . . I love your shirt and scarf.”

  Nancy and I were both wearing T-shirts that we had received special delivery from her childhood friends in Calhoun, Georgia—Tes, Can, Nita, and Bootie. “Happy 100th Day,” the shirts read on the front and “We’re always behind you” was written across the back. In addition, in keeping with her “fashionista” approach to her personal attire, Nancy’s head covering was also distinctive. It was a “buff” from Survivor, a present from Emmy and our Christmas angel’s husband, Fred, which prominently displayed the reality TV show’s title.

  Today, all things being equal, both Nancy’s shirt and head covering were very fitting.

  Summary: Nancy’s test results confirm that she has met the biggest challenge of a bone marrow transplant patient older than twenty. She is leukemia-free at the one-hundred-day post-transplant milestone.

  Best,

  Winnie

  The Real Deal

  February 24, 1:00 a.m.

  Dear Friends and Family,

  You may not be aware, but my partners and I provide both weekend and extended hours to our community because the nearest hospital and emergency room is a half-hour drive away in Salt Lake City. Many of the shifts I work at the clinic end late in the evening because we offer a place for Park City residents and guests to obtain medical care and treatment during nontraditional hours.

  After work tonight, I raced through the door of the clinic at 8:05 p.m., eager to “get down the canyon” to our apartment. Though I’ve been commuting to Salt Lake City for almost nine months, I still find the drive difficult. The lion’s share of the commute is on Interstate 80, over a mountain pass and through a narrow canyon. The drive, more often than not, is often a white-knuckle adventure.

  Almost always, in addition to the reoccurring curves, there are lots of speeding semitrailer trucks and “big rigs”—plus snow in the winter as I speed (not literally) to our “home” away from home. But not tonight. There were very few cars on the road, and a brilliant full moon lit my entire way to Nancy. In the back of my mind was the thought that if I arrived by 9:00 p.m., there would be a quality hour with Nancy before bed. I pulled into the apartment parking lot at 8:47 p.m., daydreaming about our old (but functional) couch. My feet were up, Nancy’s head was on my lap, and I was holding her hand ever so lightly. All things considered, it would be an appropriate end to a long day.

  “Hi, Winnie, how are you?” Nancy’s toe-tingling kiss erased the chill from my lips as I walked through the door. I immediately thought to myself that at this time of night, she usually doesn’t have the strength to meet me at the door.

  I choked on the word “tired” and changed it to “fine.”

  As my eyes slowly focused to the lower light in the apartment, I noticed that Nancy was dressed in clothes—not PJs. She had on her Survivor “buff” head covering.

  “Guess what, Winnie? Michaela from ASA called. My friends are having a party, starting at nine. If you hurry, we’ll be hardly more than fashionably late.”

  “All right, dear.” (What else could I possibly say as I gazed longingly at the couch?)

  We only stayed an hour, but Nancy was the guest of honor of some of her flying colleagues before her illness. When we arrived, I placed her on a couch with her feet up, kept the host’s cat away, and made sure that she didn’t partake of the vodka, gin, and other libations there were readily available. But it was a real party—nonetheless.

  “Thanks for taking me, Winnie. It meant a lot to me.”

  And to them, my love.

  Summary: Nancy went to her first real party this evening. I hope it is the first of many and that she will feel up to raising a glass with each of you in the near future.

  All our best,

  Winnie

  The Best Gift of All

  February 26, 7:03 p.m.

  Dear Friends and Family,

  When Dr. Finn Bo Peterson visited us at LDS Hospital last year on August 12, Nancy was completing her second round of chemotherapy. The news was not favorable. “If Nancy doesn’t have a transplant, she has a 5–10% chance of long-term survival—at best.” As you well know, his words were both devastating and demoralizing. At the time, we thought Nancy had an even 50/50 chance for survival. We were thrust into a different reality and had to make many hard decisions.

  Today, more than six and a half months after that very dark day, we met again with Finn Bo. This time, the news was different. Our meeting couldn’t have been more dissimilar, too. It was the difference between night and day.

  “I am really pleased with your progress, Nancy. I know it has been a long and difficult road, but you have made it. And I am optimistic you will continue to do well.”

  Finn Bo discussed each of Nancy’s results. We already knew the most important one, her bone marrow test. It is normal and there is no evidence of leukemia.

  “Have any of Nancy’s organs shown the trauma of her treatments, Dr. Petersen?” I asked.

  “Winnie, the only question mark is her lungs. Nancy had a chest X-ray that was perfectly fine, but one of her lung function tests was decreased compared with the same test before the transplant. It’s not dangerous or worrisome. But we’ll want to repeat the test when we do her next bone marrow again, in three months. On the good side, her liver and kidney function are both great, and her new marrow is producing plenty of white cells, red cells, and platelets. So we can begin tapering Nancy’s immunosuppressing drug, Cyclosporine, today. It should take about six months.”

  “What will that do, Dr. Peterson?” Nancy inquired.

  “You may remember, Nancy, that Cyclosporine is the drug that’s kept your graft in check to allow it to ease into your body. But now’s the time for your transplanted marrow to gain full strength.”

  “What things do we need to worry about in this next phase?”

  “Our major concerns are pretty much the same, Winnie. Infection and GVH (graft-versus-host disease). As the graft is unleashed, the risk of infection will drop—but the chance of GVH will be increased.”

  “What are the numbers now for contracting GVH and, more importantly, Nancy’s long-term chances? And what is the ‘long term’ in Nancy’s disease?”

  (I felt so stupid. I know better. One should never ask more than a single question at a time.)

  “Well, with Nancy making it through these difficult one hundred days, we adjust the curves. Nancy now has only a 20–30% chance of developing GVH. And I think her chance of cure, of being disease-free at two years a
fter transplant, is as high as 75–80%.”

  (Remember, before the transplant, we were told Nancy had about a 75% chance of developing GVH. And only a 50% chance of survival.)

  “Wow, Dr. Peterson! I love the new numbers. Thanks, I don’t have any more questions.”

  I glanced at Nancy. She was beaming and her face lit up with the biggest of smiles.

  And me?

  As is my tendency, I was struggling to put corks in my tear ducts until after the meeting. Nancy never turned my way, but instead, she grabbed my hand just like always. And, no surprise to me, she pivoted immediately to the practical.

  “When can I go to Park City?”

  “What about Woodland?”

  “Can I drive?”

  “Can I be alone for more than a minute?”

  “How about out-of-state travel?”

  Dr. Peterson patiently answered each and every one of Nancy’s questions. Technically, her leash was “lengthened” logarithmically. We have been cleared to live in Park City by March 1. She can reclaim her car (while we stay at the Marshalls’ home) from Jayna—but no plane or car trips until fall. Notably, our most cherished dream is also now close enough to touch.

  We will be home to Woodland by April.

  Sooner than we can imagine, we’ll be entertaining—you.

  Summary: Nancy passed her one-hundred-day post-transplant evaluation with flying colors. We will return to the mountains soon, barring any setbacks. And today is my birthday. I couldn’t have asked for a better present.

  Fondly,

  Winnie

  The Good, the Bad, and the Ugly

  March 11, 3:48 a.m.

  Dear Friends and Family,

  In my last update, I consciously tried to avoid euphoria while reporting Nancy’s incredible day one-hundred post-transplant test results.

  Quite honestly, when I heard “a 75–80% chance” tied to the sacred word cure, I wanted to believe with every fiber in my being that we truly are “on our way” to a normal life. After nine and a half months of repeated struggles, Nancy’s news feels leap years better than good.