Night Reflections

by Robert Thomas Winn

  “That’s right, Mom. I guess you have to get ‘the big C’ to be admitted to the hospital these days. The ‘big B’ just isn’t good enough to get above the ground floor.”

  Mary Lou, my mother-in-law, had recently taken an ambulance to the hospital for a bad back (the big B). She was sent home from the ER with a bunch of pills. Nancy’s cancer (the big C), however, was the ticket for an extended hospital stay. Room 842 East, LDS Hospital, Salt Lake City—where Nancy finally called her other family members, talked with Jayna and Jaret about her disease, and told me she was ready for a “serious” discussion about the future.

  I attribute Nancy’s “opening up” to Jayna.

  When Jayna arrived on the scene last week, one of her first comments was, “Daddy, didn’t you notice that this room is dreary?” I wanted to tell her that I was too busy taking care of her mother to notice, but, truth be known, such details are not usually on my radar.

  That is not the case with Jayna.

  Last night, a new nurse was on duty. Nancy was napping when she entered the room and whispered, “Do you know what we nurses have nicknamed this room? ‘The Garden.’ We’ve never seen so many flowers. And look at the cards, balloons, and presents. Your wife must really be popular.”

  Our nurse was so right. The room display, plastic flowers and all, is but the tip of the iceberg. Calls, emails, letters, thoughts, and prayers continue to pour in like spring torrents in Utah. And it’s been raining hard here, almost every day.

  I remain astounded at the support and caring, and Nancy gets close to crying each time I read your correspondences to her. It is a great consolation to our entire family that so many of you are with us in spirit since Nancy is unable to have visitors and is too weak to talk much on the phone. Still there is no doubt your display of love is helping her endure the present and grapple with her future.

  Summary: Nancy seems to be in a good place. I will update you again as my energy and emotions permit. Right now, both are in a good place, with the love of my life leading the charge.

  Peace,

  Winnie

  A Kick to the Groin

  June 11, 6:51 p.m.

  Dear Friends and Family,

  I’ve been working my daytime job during the hours that I’m not at the hospital these last few days, leaving me drained by the time Nancy’s eyes close for an extended stretch, which in her world is two to three hours. I’ve been too exhausted to write.

  Sorry.

  Today, however, starts four much anticipated days off from the clinic.

  In reality, there is a second reason I’ve waited to correspond.

  Nancy’s test results.

  Yesterday, Nancy endured a procedure called a bone marrow biopsy. A large bore needle was inserted into the back of her pelvis to extract bone marrow tissue containing the parent cells that produce the various components of blood. Even though Dr. Morton used a local anesthetic, the technique is far from painless. The grinding sound of bone being crushed could be heard across the room. I cringed, even though I’ve done the procedure myself a few times during my medical training.

  But you know my Nancy. Not a single sound or word was uttered when Dr. Morton thrust the needle deep into her bone. A barely felt squeeze of my hand and the slightest tensing of her eyebrows divulged that she was experiencing discomfort. In contrast, by the time I was wheeling her back to our room, I was drenched with sweat.

  Once “home,” Nancy immediately fell into a deep sleep; I presumed she was exhausted. Again, in comparison, I was wide-awake and fidgety. I walked the halls, pondering the coming hours. I faced a worry-filled, sleepless night. After all, the teaspoon of tissue-filled fluid Dr. Morton extracted from Nancy’s back would soon tell us if the bone marrow killing medicine was doing its job. By tomorrow morning, Nancy’s test results would be complete. We will know if Nancy has any prayer of beating her disease.

  My bad night was nothing compared to Nancy’s. Before the procedure, Nancy had taken several laps around the eighth-floor hallways, a proud smile hidden beneath her mask. She had laughed at my dumb jokes, eaten cookies topped with strawberry ice cream, and taken a long, hot shower. We enjoy simple things these days, and Nancy’s shower culminated nearly forty-eight hours of her feeling pretty decent.

  The good times ended for us three hours after the procedure; Nancy awoke from her slumber and sat straight up in her bed. Her face was flushed and she said her temples pounded and the ulcers in her mouth tingled. She struggled to find a less uncomfortable position. As I rang for the nurse, I put the back of my hand to Nancy’s forehead. Our nurse confirmed my fear with her thermometer. Nancy was burning up with fever.

  Nancy has had mild congestion since admission but is not allowed to blow her nose for fear of bleeding. As the night progressed, her congestion worsened, making breathing a chore. Between audible breaths, she pleaded, “Winnie, I ache.” Inquiring where, she answered, “From the top of my head to the bottom of my feet.” Nancy was miserable. Not only did my heart wrench with her pain, I was frantic.

  Is this a bad omen for the test results?

  I covered Nancy with blankets fresh from the warmer that sits at the end of our hallway. When the covers made her too hot, I took them off. I placed an ice bag on her neck and a second on her forehead. I wrapped her wrists in cold, wet washcloths and did the same to her elegant ankles. I rubbed her back softly, so as not to bruise. Nancy’s oxygen level dropped below the safety zone and supplemental oxygen was restarted. I longed to see Nancy asleep, dreaming of better times. At least there was little time to fret over the bone marrow results.

  This is the roller coaster of chemotherapy, and we have tried to relish the peaks. We know her condition can change quickly. And just like last time, it did.

  By sunrise, the headache was gone, Nancy was weaned off of oxygen and back to room air, and her temperature was no more elevated than mine. By the time Dr. Russ Morton, our hematologist/oncologist, entered the room for his morning rounds, Nancy was sitting up in bed without squirming in pain.

  Ready.

  My heart rate increased as I noted the serious look on Russ’s face and the way he wrinkled his brow. I took a very deep breath as he began to speak: “Nancy’s bone marrow test revealed an empty marrow. This means we no longer see any cancer cells. The chemotherapy is working. It’s as good as we could have hoped.”

  I silently cheered as his words penetrated my being. The “bad guy” cells had been wiped out by the “assassin” medicine. I nearly stood up and raised my fist like an Olympic athlete about to receive a gold medal. But Dr. Morton paused as he looked back at Nancy, and then me.

  Why does he still look so serious?

  Shouldn’t we be planning a party?

  Dr. Morton cleared his throat and continued: “However, we also received results from the tests we ran when Nancy was first admitted. The ones we ran to confirm our initial working diagnosis—the M3 type of leukemia. Unfortunately, they all came up the same. Nancy does not have the M3 type.”

  I sunk into my chair, wanting to vanish from the room. My head was spinning and my palms were so moist I had to rub them on my pants. I had been studying about leukemia during my sleepless nights. I knew what his next words would be before he spoke out loud.

  “What this means is that Nancy’s prognosis is not quite as good. We now think her classification is M5, but the exact type isn’t important. We lump all non-M3 leukemias together. If you can achieve an initial remission like Nancy has, they have a cure rate between 30 to 40%.”

  His words felt like a kick to my groin. I wanted to throw up. Instead, I grabbed one of Nancy’s elegant ankles and gently rubbed it. Nancy seemed to be handling it much better than me. Her facial expression hadn’t changed. She was attentive and seemed to understand. She would later tell Jayna and me, “Don’t worry, you two, everything will be all right. We’ll adjust.”

  My expression did change; Dr. Morton had no trouble reading my feelings.

  “I know this is disa
ppointing, Winnie. And for good reason. This is a curve ball. A very tough curve ball. But despite this news . . . believe me . . . the sky is not falling.”

  Then why did it feel that way?

  Dr. Morton went on to describe our next steps as I fought back my tears by biting my lip: Wait for Nancy’s immunity to recover. About four more weeks, he thought. Then home for a two-week vacation. Then back in the hospital for another round of chemotherapy. Repeat the cycle several times. Each chemotherapy course would have the side effects we’ve come to expect: fevers, anemia, bruises, ulcers in the mouth, nausea, diarrhea, and generally feeling awful.

  Each cycle would have a big risk—infection. Any bacteria, fungus, or virus smart enough to take advantage of her compromised state could mean game over.

  Throughout, Nancy’s face remained serene and beautiful. Flashing her amazingly warm smile, she thanked Dr. Morton as he departed through the door. She motioned me over for a kiss and followed it by stroking my hair.

  How could she be comforting me?

  I forced myself to rally and gave Nancy a long kiss too, not on her cheek as has become our recent habit, but on the lips.

  Yes, our lives have once again been flipped upside down and sideways—but we are still spending the most intimate times a couple can spend together.

  My new mantra will have to be “a 30–40% chance is better than 0%.”

  Isn’t it?

  Summary:

  1. Nancy has achieved remission. For now, science can detect no trace of Nancy’s AML. This is incredibly exciting, as good as we could have hoped. Your thoughts and prayers are working.

  2. Nancy’s road to a cure will be considerably longer and far tougher than we originally expected. Her diagnosis has changed from the more easily treated M3 subtype of AML to a non-M3 subtype of AML that often recurs with dire consequences. Still her current remission was achieved using only one induction (assassin) drug. Normally, two drugs are used in the beginning for a non-M3 AML. Though the change in diagnosis is truly depressing, we could have learned that besides not having the M3 subtype, Nancy also was not in remission. No remission would have meant disaster. Instead, she is in remission and will have multiple rounds of chemotherapy in an attempt to kill the leukemia cells that remain hidden and undetectable by current testing methods.

  My very best,

  Winnie

  A New Perspective

  June 11, 11:08 p.m.

  Dear Friends and Family,

  Well, as you might surmise from the previous letter, I have been feeling sorry for myself today. Just when I thought I couldn’t possibly bear to see pain etched across Nancy’s face again—or just when I wondered how I would make Jaret feel safe, or just when I wondered how I could convince Jayna to be twenty-two years old again (her first reaction to the new information was “I guess I won’t be going back to college”)—I discovered our newest neighbors on the eighth (cancer) floor: a family who has given me the gift of perspective.

  As part of my daily routine, I had ventured to the cafeteria to get Nancy two large scoops of strawberry ice cream and was heading back to the eighth floor. I often take the stairs, but for some reason, I took the elevator back “home” because I needed to get there quickly. My excuse? I didn’t want the ice cream to melt. In reality, I was simply too weary for the nine flights of stairs from the basement restaurant. (These are the “rationalization” games I sometimes play to get through the day.)

  When the elevator stopped on the ground floor, a man and woman in their midforties walked into the elevator. In an instant, I realized that they looked familiar. I actually knew them—Kevin and Marie. I had been their family’s doctor on and off for years and Marie was a friend of Nancy’s. In fact, Jayna had been in a play with one of the family’s two daughters. It was an awkward moment as we exchanged greetings.

  Should I ask why they are here?

  Should I tell them why I am here?

  Before I could decide, Marie said, “Winnie, I’ve heard about Nancy’s illness. I am so sorry.”

  My normal reaction, tears welling up and a momentary inability to speak, kicked in. I looked at the floor. Finally, lifting my head up I recovered enough composure to respond, “Thanks, Marie. What brings you and your family here?” (Fortunately, I didn’t say, “This late and after normal visiting hours.”)

  I was stunned by Marie’s answer: “You probably remember our oldest daughter Megan. You took care of her when she was growing up. She just graduated from college in Virginia and came home for the summer. Megan has just been transferred from the recovery room after ten hours of surgery. She is on the same floor as Nancy.”

  I thought to myself, “Why is she on the cancer floor?”

  After a brief momentary pause, Marie continued and I learned the answer: “Megan started having stomach pains two weeks ago. It turns out she has ovarian cancer.”

  My legs nearly buckled under me, but fortuitously we arrived at the eighth floor and the ding of the elevator gave us all a needed break as we exited. Marie continued after the elevator door closed: “It’s pretty bad, Winnie. They had to remove her right ovary, part of her bowel, part of her bladder, and part of her liver. The cancer had spread everywhere.” Marie’s tears matched those of Kevin. I gave them both a hug, trying to hide my own wet face.

  As I walked to Nancy’s room, I realized how selfish I have been with our family’s plight. Megan is a mere twenty-two years old. She faces drugs with horrible side effects at best and more painful surgeries at worst. She has a prognosis far more grave than Nancy’s, probably less than a 1% chance of reaching the age of twenty-five. My heart broke into little pieces and I wanted to curse a supreme being, if he or she exists. How could this happen to someone so young and so full of promise? It took over ten minutes to regain my composure before delivering Nancy’s ice cream.

  “You must have walked up those steps, Winnie,” Nancy chided. “It’s almost melted.”

  I didn’t explain—at least for now.

  Instead, I hugged Nancy more tightly than usual, hoping not to cause bruises.

  Nancy’s spirit is strong and mine is regaining its vigor. During the good hours, we laugh and kid each other, and I tell her of the incredible energy coming from your direction. She is upbeat and positive.

  I will write more soon, next time, with any luck, from a view at the top of a summit on our continuing roller coaster ride. I hope this letter hasn’t been too negative. Tonight, I gained new perspective and thought it might help to share it with you.

  There is a bright side to this experience: Our daughter has arrived safely home. Our son is doing well. I am able to feel the strength of family relationships as never before. And with regard to our friends, I am truly astounded at how lucky we are each and every day.

  I had no idea so many people care about and love Nancy.

  Summary: Despite our setback, Nancy sees more light than darkness. I have a new perspective, and am trying to see things through the lens of Nancy’s eyes.

  All my love,

  Winnie

  A Half-Full Glass of Lemonade

  June 18, 3:36 p.m.

  Dear Friends and Family,

  My mother was an optimistic, completely positive person. I grew up amid phrases like “Make lemons into lemonade” and “The glass is always half full.” Though she died several years ago, her long ago guidance has been vital for these challenging times.

  A week ago, my sister-in-law Linda called from Georgia. I nearly dropped the phone when she announced, “Winnie, from the minute Nancy entered the hospital, I’ve been working to free up my schedule. I really want to see Nancy and help you, Jaret, and Jayna. I bought my ticket today. Can you pick me up at the airport tomorrow afternoon?”

  Speechless, I paused to gather my thoughts. How could I tell her “NO” gently? I replied, “Jayna and I are doing great, considering everything. We alternate times at the hospital. Jaret has adjusted to Nancy being in the hospital. My partners, along with everyone else at w
ork, have been totally supportive. There has been an unbelievable outpouring from friends locally—even as far away as New Zealand. Everyone wants to help. So for right now, Linda, we’re actually all right.”

  I really wanted to say, “Don’t come now. We don’t need you.” Or more accurately, “We’re not ready yet.”

  Linda ignored my request and informed me, “Anyway, I land at 2:40 in the afternoon, Winnie. After you check your schedule, let me know if I should call a cab.”

  As is too often the case, I was all too wrong.

  Linda arrived and has been a whirlwind of activity ever since. She fills in at the hospital when I am working and Jayna has a commitment such as her appointment at the University of Utah. She picks up garbage bags for the compactor. She has restocked our home refrigerator with real food. She does things like noticing that our houseplants are drooping like they’re living in a desert. And most importantly, she is taking Jaret under her wing.

  I see evidence of her presence everywhere I look in Woodland. Actually, the first several days she was here, I rarely saw Linda because she has slept at the hospital with Jayna on the “every other night” schedule when I didn’t sleep in Nancy’s room. Nancy glowingly described it to me this morning as a “girls’ night in.” Even during the days when I am in Salt Lake City with Nancy, Linda has been busy being “Aunt-in-Chief.”

  So when I don’t see Jaret in nearly three days, I ask Linda the same question many of you sympathetically ask me: “How’s Jaret doing?” I spend the day at work and go directly to the hospital to relieve Jayna for my “sleepover” with Nancy.

  “Jaret’s fine. He and I . . .” and then she tells me of the many adventures she and Jaret have had the day before at the market, the toy store, or the park. She talks about his coursework, which she is now monitoring.