Night Reflections

by Robert Thomas Winn

Was it the soothing sounds of our real home?

  Or the gurgling river?

  Or the sweet smell of fresh flowers?

  Or maybe it was the chirping birds?

  Quite simply, there is no adjective worthy of Nancy’s facial expressions as she re-experienced the taste of home-cooked meals. (Again, many thanks to our “local” friends for the daily presents left anonymously on our doorstep.) So many “home” aspects have contributed to Nancy’s recuperation. Her mind is clear again and her spirit is back. The last seventeen days, we’ve laughed a lot and cried just a little.

  In many ways, our previous hospitalization is a fog for Nancy. Much of it bypassed her memory bank, a condition that is quite fortunate. Since coming home, Nancy has discovered the one part of our last hospital stay I didn’t want her to miss—the many people who have cared about her and sent their love. When she first came to Woodland, I placed a huge stack of cards on the night table beside her. Today, as we prepare to leave, the stack has disappeared, now filed in a very special drawer.

  Though I remain “in charge” of Nancy’s correspondence and sometimes have to read to her, during the past two weeks, Nancy has eagerly devoured your emails and letters. The effect has been crucial. Nancy’s mood has been lifted by the unwavering support you have “beamed” in her direction. She exhibits new resolve and is ready for tomorrow. Actually, more so than me. (I’d rather our present vacation extend indefinitely.)

  Jaret and Jayna have also cherished the relative normalcy of the last two weeks. It has been a much-needed quiet period and a well-deserved intimate time for our family. Like Nancy, they seem ready—at least outwardly.

  So we return to the hospital tomorrow with a clean slate. There is no leukemia detectable in Nancy’s body.

  Before bed last night, Nancy flexed her biceps and flashed her arm muscles like Popeye (without either the pipe or can of spinach) and quipped, “I’m ready.”

  I’m also ready to hold Nancy’s hand and absorb any and every squeeze.

  And we’re both comforted that each of you is part of our team.

  Thanks.

  Summary: We return to the hospital tomorrow with Nancy focusing on the future—while tugging me in that direction, too.

  Fondly,

  Winnie

  A Tip of the Hat to Chemotherapy

  July 25, 6:15 a.m.

  Dear Friends and Family,

  I am feeling silly today. (Perhaps giddy would be a more appropriate description.) My hands are linked behind my head and my feet are up on a stool. I am watching my bride sleep as if she is floating on a cloud. Even though we are still in the hospital, for once I feel relaxed. There is no hint of pain on Nancy’s expressionless face.

  Unlike many other times, I also detect no worry. As I look more closely, Nancy’s beautiful bald head sports several brave strands of hair. I have to suppress a laugh. The little hairs randomly dot her scalp, standing straight and tall like telephone poles. They seem to whisper to me, “Look. I’m back already.”

  The early morning light is uneven, and even as I sneak close to her, I can’t distinguish the color of the new growth. (We do have the same great, albeit tiny, view of the mountains through our window in Room 844. Today, however, clouds mostly obscure the sunrise.) Though I’m eager to know if Nancy’s hair will return as blonde, red, white (or even blue, I don’t care), it may be many months before we know the answer. Nancy has just completed her second round of chemotherapy. The new, cute hair strands will soon adorn her pillow, leaving her head bright and shiny again.

  I’ve been pondering how to better explain Nancy’s medical treatment. Having watched more TV these past months than in entire previous years, I’ll utilize that medium. Pretend you are sitting with me and we are watching TV. A commercial for Nancy’s major chemotherapy drug, AraC, interrupts our game show, sitcom, or sporting event.

  “Take AraC and watch the ‘bad guy’ leukemia cells melt away from the bone marrow,” a soothing TV pitch woman begins.

  On the screen, the image of a cave emerges. There are stalactites and stalagmites in every direction. However, this cave looks different from any that you and I have seen before. The cave is fluorescent pink. The brightness almost hurts our eyes. The caption below the cave entrance reads “Inside Nancy’s Bone Marrow.”

  As the camera pans the cave, we notice that there are black spots on the walls. The camera zooms in on one of the spots and what is revealed is startling. Each black spot is an ugly, gnome-like creature with a twisted, wrinkled body and a horrid face sporting a nefarious smile. The creature’s eyes protrude on stalks from its face and are huge and bloodshot. The shifting pupils stare at us eerily as if searching for prey.

  The new caption on the screen is a single word: LEUKEMIA.

  Suddenly, a brilliant gold-colored gas flows through the pink cave. One by one, the dark creatures fall from their perches on the walls, vaporized in a puff of gray smoke. When the gold gas disappears from the picture, the bone marrow is transformed. In just seconds, it has become a deep (and healthy) red.

  The soothing TV voice continues: “In three times out of ten, AraC will eradicate the leukemia cells. Just like Drano ridding scum from your toilet’s pipes.”

  The scene changes. Now on the TV is a swing set resting amid a field of knee-high, bright-yellow sunflowers. As we get closer, we see a little boy being pushed higher and higher by his mother. A close-up of the boy and his mother show matching freckled faces and award-winning smiles. As the mother turns away from the camera, she removes her long, flowing blonde ringlets that are revealed to be a wig. The boy’s eyes widen in surprise at his mother’s lack of hair, but he gently touches her fuzzy head with one finger, then two. The little boy eagerly rubs his mother’s head with both of his tiny hands. They both laugh. The boy kisses his mother’s cheek.

  The soothing voice continues in the background during this scene: “Of course, AraC is not for everybody. Occasionally . . . well, actually often, there are significant side effects. The most common side effects are vomiting, diarrhea, headaches, and painful skin rashes. Please call your doctor if your kidneys fail, you have brain damage, or die. Actually, if you die, have someone else call because it would be a very long-distance call and our toll-free number might not work. You should not take AraC if you do not have leukemia. In fact, you probably should discuss taking this medicine with your doctor even if you do have leukemia. AraC is a dangerous drug.”

  Once the commercial is over, you are back to watching Jeopardy or some other “entertainment” diversion. (Me? I’d be shaking in my chair, worrying about AraC’s potential problems.)

  We just imagined the ALL-LEUKEMIA channel. The cave part of the “commercial” is a technique I mentioned previously in my letters called visualization. Nancy and I use it with each of her chemotherapy treatments. She sometimes falls asleep. When I visualize, I either laugh or cry when I’m finished.

  Nancy has just awakened me from my Walter Mitty–like revelry: “Winnie, what are you doing up so early? I hoped you would sleep late today. Didn’t you have only four hours the night before last when you were on call? And maybe just five last night?”

  I jump from my chair, move to Nancy’s bed, and place a loud kiss on my favorite mole atop her shiny head.

  “You are right, my love. But I feel great. Look at your IV bag? Not only did you sleep all night, you’re less than an hour away from finishing this round of chemotherapy drugs. And you’ve had no side effects.”

  Nancy and I look at each other without speaking.

  Six doses of AraC are fading into the rearview mirror. Nancy and I were plenty nervous when her initial bag was hung six days ago. I had flashbacks to the first day of her first round of chemotherapy when she entered the hospital, when Nancy’s lungs filled with fluid and she required more oxygen by the minute. There was scary talk about the ICU and a respirator. I remember wondering if Nancy would survive that first day.

  Chemotherapy drugs, though lifesaving, are dangerous.
Unbelievably dangerous. Just like in my made-up commercial. And even though Nancy has only received the same drug at the same dosage for the same amount of days, this round is different. A new Nancy has returned to the battle this time.

  Strong.

  Confident.

  Ready.

  And with Popeye muscles.

  For us, AraC is Nancy’s Vitamin C—her special orange juice. Despite the negative risks, Nancy has now made it through six doses without a hitch. In fact, she has actually watched DVD’s (and Jeopardy) and eaten like she was still on vacation at home. (Well, not exactly. The food is nowhere as delicious as the gourmet meals provided by our local friends.) Yesterday, we even did twelve laps up and down the hall in a single outing. During Nancy’s first hospitalization, three laps was her personal best.

  Today, I write this letter with a smile stretched all the way across my face. Nancy’s smile is similar, too. We know that it’s just a single day among a long line of difficult days to come, but we will enjoy every last feel-good minute.

  Why?

  AraC’s expected and desired effects will increase dramatically over the next several days. Nancy will, like last time, become severely neutropenic with no white cells to fight infections. Already, this morning, she has been asked to wear a mask for her walks in the hall. Her platelets will drop critically low, necessitating replacement platelets every few days to avoid serious bleeding. Her oxygen-carrying red blood cells will continue to decrease, and soon Nancy will require transfusions again.

  The result?

  Nancy will once again be at high risk for fevers as unusual germs attack her body. She will have to be careful to avoid bumps and the resultant bleeding. She will be physically weakened due to the coming anemia.

  And yes, sadly, she will once again feel just plain crappy.

  Our arsenal is full, however. We have ever-increasing experience. Nancy’s scary first month of treatment, called induction, is now just a vague memory. She still has no sign of recurrence, so she is technically in remission. When the final red drop of AraC enters her veins, we’ll have made it through the first round of consolidation chemotherapy. It’s called “consolidation” because the new chemo helps “consolidate” our gains against the cancer. If she can make it through this next rough period, we will be able to go home for another two-week vacation.

  “Let me get that for you, sweetie,” I say as I see her reaching for the book on the far end of the nightstand. Nancy ignores me. She sits up, stretches an arm, and retrieves the other book she is reading, the thriller The Lions of Lucerne by Brad Thor, a friend of ours.

  “I can do it, Winnie. I should do everything I can while I still feel so good.”

  Yes, Nancy does feel good and I am giddy.

  On the phone last night, she described recent events to a childhood friend. It was the first time she had called someone other than family.

  “You know, except for this awful disease, it has been a really positive experience. I’ve learned a whole lot of people care about me . . .”

  Critically, Nancy is basking in the warmth of your love and support.

  And I can think of nothing more important in helping with her fight.

  Thanks so much from the bottom of our hearts.

  Summary: This morning on day seven of hospitalization two, Nancy is finishing her chemotherapy, having tolerated it well. Though she feels great now, we know she will get sick again as the medicine attacks her and her leukemia.

  All our love,

  Winnie

  Parting Is Such Sweet Sorrow

  July 28, 1:40 p.m.

  Dear Friends and Family,

  Today is a very sad day in our “penthouse” hospital room.

  Why?

  (It’s not what you think.)

  August 1 is “back to school” day for Nancy’s sister, Linda. Tomorrow she will be preparing schedules and attending workshops. Lesson plans and seating charts will replace hospital sleepovers and time spent with her nephew, Jaret. Linda will board a plane and travel 1,787 miles east to Dalton, Georgia, where she teaches middle school students ESL (English as a second language).

  For the past six weeks, Linda has been the most amazing sister-in-law. Plunging into our family chaos, she immediately made an impact. She substituted for her sister, Nancy, helping Jaret successfully finish his junior year of college. Linda ensured that Jayna always had at least one friend for movies. (During this time period, Jayna had difficulty being around anyone outside our family circle.) Linda even made sure I remained grounded so I could lead my “double life” as a doctor in Park City and as a husband (and caretaker) in Salt Lake City. Simply put, if I looked up the word “godsend” in the dictionary, I am certain I’d find a picture of Linda.

  But even more important than what Linda provided for us (Jaret, Jayna, and me) is what she has provided for Nancy—a link to her normal past life before leukemia. And as Linda was preparing to leave for the airport yesterday, it was no different from what I had witnessed for many weeks.

  “Oh, one more thing, Nancy,” Linda said. “I guess we don’t need those towels I bought for the guest room in Woodland. We found the missing ones.”

  “Not a problem, Linda. I can take them back for you.”

  As Nancy took a sip of water, her eyes shined brightly and she sat straight up in her hospital bed. True, she had no hair. Yes, she was dressed in a less-than-fashionable blue polka dot hospital gown. And if you were to make a close examination of either arm you would observe the telltale bruises. But if I had closed my eyes I would have sworn that Nancy’s speech and delivery would have found her sipping that glass of water in a restaurant or in our home. Nancy sounded and acted completely normal.

  Does she really have leukemia?

  Is she really fighting a life-threatening disease?

  In all honesty, my slight chuckle disguised the feeling of moistness behind my contacts.

  “What a great idea, Nancy! Will you take your three IV bags with you? Wear your mask? Which hat would you like?”

  Linda has a unique and unusual laugh that starts out low in pitch and volume, includes some intermediate breaths while winding up, and then finishes with a loud, midrange cackle that crescendos to a high note bordering on a near scream. A distinctive noise combination that would be recognizable from the other side of a football stadium, her laugh can in a flash fill every inch of our hospital room. And like a yawn, Linda’s laugh is contagious.

  The significance of Nancy’s remark was not lost amid our laughter. Nine days into hospitalization two, after six maximum doses of the chemotherapy drug AraC, with her red blood cell count low enough to require transfusions, her white blood cells absent, and her blood clotting platelet cells in the “basement,” Nancy felt good enough to contemplate running up to the outlet mall to return towels for her sister.

  I flashed back to Nancy’s declaration last night before she went to sleep.

  “Winnie, sometimes I feel almost normal.”

  Nancy is a true trooper, and at least this time, we have been lucky. This hospitalization has been less traumatic than we anticipated. She is walking the halls, eating everything in sight, and best of all, laughing a lot. And her demeanor has not gone unnoticed by the nursing staff.

  Our primary nurse this week, Anne, told me the other day, “Winnie, your wife is amazing. We’ve never seen someone exercise like she does when her bone marrow is totally shut down.”

  And I don’t believe that I’ve mentioned this observation in prior notes, but more than once I’ve had staff members give variations of what our certified nursing assistant told me last week, “Winnie, your wife is my favorite patient. Ever.” (Will has worked on the bone marrow floor for seven years.)

  Mine too, Will.

  As Linda stood up to get ready to depart for the airport, she gave her sister a final hug but not a kiss. Kissing spreads germs, and Nancy has no infection-fighting white cells left in her blood. (Should I tell Jayna about kissing and germs?)

&n
bsp; Over the past six weeks, I’ve witnessed incredible closeness and caring between two sisters. (I can only hope that Jaret and Jayna will be so connected.) During the last hug between Nancy and Linda, I felt like a voyeur. Though the sisters talk “southern” and avoid direct discussion about most things, including their closeness, their tender bond warms me to the center of my soul.

  As Linda and I walked to the elevator, we did share some “germs” as I held her a last time. In all candor, partings have always been a mystery to me—especially now. I think to myself, “When will I see you again, Linda? Where will Nancy be?”—and the question I try not to ponder, “How will Nancy be doing?”

  When I returned, my bride was in tears. We held hands in silence. Then Nancy dropped my hand, and I heard a deep sigh. The melancholy painted across her face was replaced by a smile—the one that makes me melt like chocolate in the warm summer sun.

  “This isn’t really that bad, Winnie. The people who work here are so nice. I don’t have to cook or clean. I can read as many books as I want. And I get to spend so much time with my family.”

  She grabbed my hand again, and I noticed a playful twinkle in her eyes. “You know, Winnie, except for this disease, it’s almost fun.”

  Of course, Nancy left out the pokes and prods, the sleep interruptions, and, of course, the uncertainty of our future. I do so marvel at her spirit. She’s already adjusted to Linda’s departure and the void she leaves behind before I can even take a deep breath.

  Summary: Nancy’s sister returned to Georgia today and she will be sorely missed.

  Very much love,

  Winnie

  Donuts and the Nadir

  July 28, 8:40 p.m.

  Dear Friends and Family,

  Linda’s departure was more draining than Nancy will admit. She didn’t fall asleep midsentence, but she did take a nap shortly after Linda left and didn’t awaken for three hours. When she finally sat up in bed, a classic impish expression returned to her face. Nancy’s sky-blues looked up and away, a little wrinkle toward the tip of her nose appeared and her playful voice gave me my marching orders.