Night Reflections

by Robert Thomas Winn

  As seems to be my habit, I awakened in time to view the sun jump atop the majestic Wasatch Mountains through our east-facing window. I found, somewhat surprisingly, that watching the sun’s energy rouse the Salt Lake Valley was mesmerizing. Tall, glass-filled office buildings reflected a rainbow of color from the sun’s initial rays. The first delivery trucks darted quickly down otherwise empty streets. The sudden rise in temperature allowed four black-tailed hawks to take advantage of the morning updraft and glide gracefully through space.

  And the best part of my view was not outside the room—but rather just to my immediate left. Nancy was still peacefully sleeping, having had her longest slumber of the week, a full seven and a half hours. She only stirred to swallow her midnight pills, to provide an arm for her 5 a.m. blood draw, and to lend an ear for a temperature determination during her vital signs checks that are being done every four hours. It was her best night yet. In fact, for most of the night, Nancy slept deeply enough to snore. (Don’t tell her I told you.)

  During her 11 p.m. blood draw, just before kissing my cheek goodnight, she described a dream from the previous evening: “It was really weird, Winnie. I was both the nurse and the patient. I took my own temperature, dispensed pills to myself from a bottle the size of a gallon of milk, and went to the hospital kitchen and served myself a plate overflowing with blueberry pancakes stacked at least six inches high. I even started my own IV. It didn’t hurt.”

  I chuckled along with Nancy at her retelling, but I am excited and happy—even subconsciously Nancy is becoming part of her treatment. She certainly does all of the other necessary things to help herself get better. Several times a day, she walks the halls, IV in tow and mask on her face.

  Last night, out of the blue, Nancy said, “Why don’t we see if the TV works?”

  We watched an entire NBA playoff game between my team and the Golden State Warriors. By halftime, I was so relaxed that I could reflect without worry that today Nancy restarted her chemotherapy meds and there have been no untoward effects. That same drug nearly put her on a respirator seventy-two hours ago. This time, it was totally innocuous.

  Myself, I probably slept five hours—my best hospital sleep as well. (In the comfort category, the rollaway is a quantum leap from the chair.) For the first time since Nancy’s diagnosis, I am actually feeling well rested because every other night I am home in Woodland in a real bed, secure with the knowledge that Nancy is in very capable hands—Jayna’s.

  Jayna. Though she immediately dropped everything in Peru and traveled twenty-six hours straight to be at her mom’s side, Jayna strolled into the hospital and has not missed a beat.

  Well, maybe an occasional beat. When Jayna is tired, she’ll burst into Spanish before she notices the dim-witted look on my face signifying I have no clue what she has just said.

  I am elated to have her back.

  Jayna is like her mom. She has an incredible presence and similarly gutsy determination. She single-handedly helped wean Nancy off oxygen yesterday by challenging her to excel during a breathing exercise that entailed sucking air out of a machine. Unfortunately, all hospitals are staffed differently than when I was a resident, so minor nursing care like Nancy’s breathing exercise is left to the family. Jayna is up to the task. Nancy nicknamed Jayna “the slave driver,” a badge Jayna wears proudly. In comparison, I would probably be labeled “old softy.”

  Jayna’s effect on me has been equally dramatic. With our tag teaming at the hospital, I can see patients at the clinic knowing Nancy is not alone; ride my mountain bike almost every day with Chuck or Kathleen, who want me to stay healthy so I can help Nancy recover; and do mundane house stuff like making sure Nancy’s many houseplants don’t weaken and wither.

  When I search for silver linings to the terrible hand we’ve been dealt, one particular example screams out.

  Parents don’t routinely watch their children grow, mature, and demonstrate their value systems. In our case, Nancy’s leukemia has provided a dramatic window into the woman our daughter has become as an adult. When Jayna called this morning to inquire about her mom’s night and tell me she was on her way to the hospital to relieve me, she dropped a bombshell: “Dadder, I’ve decided. I won’t be returning to Vassar this fall. I need to be with you and Mom.”

  My heart plunged and I had an acid-like taste so bad I needed two Tums tablets. Nancy and I want Jayna’s senior year at Vassar to be the best. With a 3.87 GPA, she has mastered the academic challenges. A tremendous group of caring friends have been discovered. And she would have returned fresh from an entire year’s adventure in Peru, full of perspective and wisdom to enjoy her last carefree college days. Nancy and I want her senior year in college to be the end of the educational rainbow.

  And yet Jayna is poised to put her traditional college experience in the rearview mirror. “Jayna, that’s three months away. No need to decide now,” I meekly replied as we hung up.

  I live my days in halves.

  I work half the time in Park City treating a large number of patients, and the other half at the hospital worrying about a single patient. On my days off from the clinic, when I am in Woodland, everyday details replace patient care: paying bills, getting the garage door fixed, transferring the dirty dishes from the sink into the dishwasher. I haven’t allowed myself to think about anything farther than two days into the future.

  My daughter on the other hand?

  She is already thinking months ahead.

  When Jayna arrived at the hospital later in the day for her “shift,” she finished our conversation: “Dadder, I mourned Vassar for two full days. I’m ready to move forward. I have an appointment tomorrow at the U. I might just finish college here in Utah.”

  As I looked into Jayna’s sparkling blue eyes and basked in the warmth of her smile, I saw both peace and resolve.

  She is so much like her mother.

  My head was filled with the unspoken words from our good friend Joannie.

  “Jayna was born wise.”

  Summary: I am trying not to exhale because we’re savoring a “good time” period, in no small part due to Jayna.

  Much love,

  Winnie

  A Mother’s Son

  June 7, 6:48 p.m.

  Dear Friends and Family,

  Many of you have inquired about Jaret. So I will dedicate this note to him. (I have been remiss in not including an update on him sooner, as he, like Jayna, is an important part of our team. There are so many puzzle pieces to keep on the board.)

  Jaret (who we often call J) is now twenty-five years old.

  As many of you know, Jaret is autistic, though fortunately he is very high functioning. His major disability is extreme shyness that makes it difficult for him in social interactions. When he talks, he rarely looks you in the eye. He also has weak fine motor strength that makes tasks like cutting his own finger- and toenails a personal challenge and the act of writing an adventure. (Thank goodness for computers, as his penmanship is as illegible as mine.)

  Intellectually, he has great strengths in his areas of interest where he is almost an expert and creates his own world with each of the fields he enjoys. He performed well enough in high school and on the ACT test to be accepted at Westminster College in Salt Lake City, where he is living independently amid his junior year and carrying a 3.4 GPA.

  As you could probably guess, much of his strength and success is a direct result of his mother’s unwavering love, support, and advocacy. Her kind, gentle manner has always made him feel safe and secure, empowering him to push his envelope and reach his full potential. For example, many individuals with autism don’t travel well because they need a strict routine to feel comfortable. Jaret, on the other hand, has grown up exploring various parts of the globe because it is part of his mother’s world.

  In the past, Jaret has been averse to all issues surrounding death. He abhors Halloween and costumes, closes his eyes when we pass graveyards in the car, and doesn’t like to hear any of my medical storie
s the way Jayna does. So Jaret has been hit especially hard by Nancy’s sickness.

  “Could Mom die, Dad?” he asked the first night after I explained Nancy’s disease.

  A most difficult conversation followed. But like his sister, Jaret has risen to the occasion.

  “I’ll be okay, Dad. You help Mom.” And without hesitation or complaint, Jaret regularly visits his mom in the hospital, a place that he previously avoided much like he does vegetables.

  So Jaret is doing well. He is finishing this semester and, for the first time, without his mother’s constant vigilance and assistance. Many of you have kindly offered help. Right now, it appears Jaret doesn’t need it. In a single week, he has grown up years.

  Summary: With his mother’s illness, Jaret has been forced to be more independent than ever before. He has been up to the challenge. He is his mother’s son.

  All our love,

  Winnie

  The Red Assassin

  June 7, 8:39 p.m.

  Dear Friends and Family,

  Nancy and Jayna spent much of the day shopping for hats on line.

  Why?

  Nancy just completed the last dose of one of her chemotherapy drugs, Idarubicin. Idarubicin’s job is to attack bone marrow cells, but it affects other rapidly growing cells, like hair, as well. Though it often upsets the GI tract, it hasn’t even made Nancy nauseated. My strong woman—a woman, nonetheless, whose hair is falling out in clumps. (I am afraid to share with you that very soon my bride will have less hair than me.)

  Idarubicin is very ascetically impressive when administered because it is a bright red, almost fluorescent liquid. Anyone witnessing it trickle down the IV tubing and into Nancy’s vein can’t help but believe it must be powerful.

  I think all IV meds should have color. But even if Idarubicin wasn’t red, it truly is a potent medicine. I have therefore nicknamed it “The Assassin Drug” because it is meant to obliterate Nancy’s entire bone marrow.

  At the suggestion of our good friend Marion Wheaton (a nurse), each time Nancy gets it, I visualize miniature “Pac-Men” entering her bloodstream to eat up the “evil” white cells. As an alternative, Marion suggested thinking about little soldiers marching to battle, so I now ask Nancy to visualize an army parading into her vein. (She gives me that “Yes, dear” look.)

  The Assassin Drug, full of “Pac-Men” or soldiers, has been busy.

  Nancy’s white blood count (WBC) is now a shadow of its former self, a mere four hundred. Not the 89,000 WBC it was on admission. Or the 4,000 WBC that would be on the low end of the normal WBC range of about 4,500–10,000.

  FOUR HUNDRED!

  This very low number is really good news, leukemia-wise. It means, as far as we can see in Nancy’s peripheral blood, the evil cells have been wiped out. The only bad news about a four hundred WBC means that Nancy has little, if any, immunity left.

  We have to be ever vigilant for infection, which is why Nancy can’t have live flowers or fruits in her room. We also have to be very careful with visitors. And it’s why I wash my hands so many times a day that they are as dry and as rough as sandpaper.

  The rest of Nancy’s blood count numbers are also good in comparison to her numbers upon admission. Her doctors were not exaggerating when they said she could easily have died in the first twenty-four hours. She was lucky to have received such prompt and competent attention.

  Nancy also continues to receive a second chemotherapy drug, the pill ATRA, which I have nicknamed the “Parent” medicine.

  Though a large part of Nancy’s problem is too many of the white cells called myelocytes, the other part of the problem is that those white cells are immature and therefore don’t function properly. ATRA helps new myelocytes grow up and mature. You may remember when Nancy started the ATRA, it caused fluid to form in her lungs, nearly requiring a transfer to the intensive care unit and, potentially, a respirator (which would have put me in the cardiac care unit, or CCU).

  I am happy to report that since the first day’s scare, Nancy is tolerating the ATRA. We look forward to hearing that like the Idarubicin, it is doing its job.

  Summary: The chemotherapy is going well at this point, and Nancy has finished one of her meds for this first round.

  One down, and many to go.

  Best,

  Winnie

  The Power of a Letter

  June 7, 11:02 p.m.

  Dear Friends and Family,

  So many of you have been sympathetic in your responses to my ramblings.

  I am eternally grateful for your thoughts, prayers, and offers of help. In the middle of the night, when I watch Nancy sleeping, it is nice to have companions other than doubt and fear. Your notes and emails serve as confidantes in the dark of the late evening.

  Thanks immensely.

  Further, your stories about my bride give me new knowledge and bring smiles to my face.

  An example:

  Hi Nancy,

  I don’t know if you remember me, but we graduated from the University of Georgia together and started with TWA at the same time. We flew together from time to time and, as newbies, were always assigned to the back of the plane in E zone on full 747s!

  I remember one trip to Madrid when you were working L5 and I was R5. A man in the last row gave you a really hard time and you came back to the galley crying. I knew it was nothing you did (you were the best flight attendant ever!), so I went back and told him off for making you cry. It turned out that his father had just died so he was upset and took it out on you. He ended up working the snack service in the galley for us while we delivered the sandwiches. Then he sent us each a pair of boots (he owned a shoe factory).

  It’s funny the stories you remember. In my many years of flying since, our Madrid trip was the only time any passenger ever sent me a present. But then, I can’t remember ever working with a person like you before or since—fun, hardworking, and kind. I truly enjoyed those early days.

  I hope your road to recovery is quick and painless. I don’t know if you’d remember, but I met my husband of thirty-four years on my very first trip as a flight attendant en route to Shannon, Ireland. Unfortunately, he is going through chemo and radiation for lung cancer right now, so we understand your battle. I know you are surrounded by a loving family and wish you all the best.

  Love,

  Lee Waddell McCarthy

  I was not surprised by my beloved’s response when I read her that letter this morning. The rest of the day, she could only think and talk about what Lee was going through with her husband. She directed me to call Lee as soon as possible to offer my medical input.

  Summary: Your many responses to Nancy’s illness have been an incredible comfort during our tough moments and a true joy during our better days. I had not anticipated the breadth and depth of having Nancy’s plight shared with so many. We have reconnected with a number of friends from the present and past, from near and far. All are now an integral part of Nancy’s support team. Thanks for spreading the word.

  Love,

  Winnie

  A Glimpse of Nancy’s Garden

  June 8, 3:03 a.m.

  Dear Friends and Family,

  Several of you have inquired about Nancy’s mental health.

  I’ve been asked time and again, “How is Nancy doing?” I assume the real and true meaning to the question is “How is Nancy dealing with a life-threatening illness? How is she feeling?”

  I must admit, I’ve pondered this very issue many times.

  Nancy is the most giving and selfless human being I have ever encountered. She is always thinking of others, not herself. And yet she is facing life’s biggest mystery squarely in the eye.

  How scared is she?

  A little?

  Somewhat?

  Or just plain terrified?

  Personally, I’m in the “terrified” category.

  And is she depressed?

  I am.

  I ask myself over and over, “What more can I do? What can anyo
ne do for that matter, and how can I facilitate it?”

  Questions clatter in my head like the fast-moving balls of a pinball machine.

  Nancy’s father had a long, protracted battle with throat cancer that wasn’t pretty. After his final surgery, he told Nancy, “I shouldn’t have done it. It wasn’t worth it.”

  Is Nancy having similar reflections about her treatment?

  Will she talk to me about her private thoughts?

  Her fears?

  Her wishes?

  I’ve always believed that Nancy and I were best friends and soul mates, able to tackle subjects tougher than the weather. But until last night, I’ve had quite honestly only fleeting glimpses of my wife’s deepest feelings. While I’m single-handedly supporting the Kleenex industry, I’ve only seen Nancy cry once and that was about disrupting Jayna’s Peru adventure.

  Nancy has not wanted to discuss her disease, waving her hand and saying, “TMI (too much information),” when I wax medical. So I have surmised that she wants to process all that is happening to her silently and, for now, by herself.

  I know this has to be a difficult time for her.

  I hold her hand as much as she will allow.

  Out of the blue, things changed this morning. For the first time, Nancy asked for her mobile phone.

  “Hi, Mother, it’s Nancy.”

  Leukemia has no effect on phonation. I suspect my mother-in-law knew her daughter’s voice, even though it was their first conversation since Nancy’s diagnosis.

  “Yeah, they even have a nickname for me. I’m a ‘leukie.’”

  Humor. One of Nancy’s primary MOs (and one that contributed to me falling head over heels for her). My tears contrasted her smile. Nancy’s tone, her face, even the use of her free hand all gave the same message: “I am now able to talk about my disease. I am fine.”