Night Reflections

by Robert Thomas Winn

  “Then you have a different view of our situation from when we talked last?”

  I’d waited nearly five weeks to hear his answer.

  “Yes, Dr. Winn, I do. I’ve had a chance to study Nancy’s case in greater depth, and I have consulted with others in the field. Quite simply, there’s no clear-cut recommendation for you and your wife. When we talked before, I gave you a number based on Nancy’s age and disease. But as you know, Nancy’s been atypical. Her response to initial chemotherapy has been more rapid and better than expected, so her chances are probably better than I previously thought. Unfortunately, there aren’t enough cases like hers to give you more exact statistics.”

  Though not a specific number, I was pleased to hear that his perception of Nancy’s chances was better than the last time we talked. Nancy and I weren’t shy with our questions.

  “What is the cure rate at your facility for someone Nancy’s age?”

  “Which drugs do you use?”

  “Will she require radiation?”

  “What qualifications does someone need to work on your floor?”

  “Can family members stay the whole time?”

  The queries we posed Dr. Peterson went on and on. We inquired about staffing levels, projected time frames, and our most pressing question—which type of transplant Nancy might have if we proceeded with surgery.

  “Do you recommend a full or mini-transplant?”

  Dr. Peterson answered each question patiently and was not afraid to say, as he often did, “I don’t know.” He came across as both caring and thoughtful. He appeared both knowledgeable and competent. He good-naturedly answered questions for more than an hour. I was excited and satisfied about gaining so much knowledge. After shaking Dr. Peterson’s hand and thanking him for coming, I turned to Nancy. It was only then that I noticed wrinkles of distress stretched across her brow.

  “What’s the matter, Nancy?”

  “Oh, nothing much. Really.” (Southern speak, even to me.)

  “That’s not what your face says.”

  Nancy reached out her hand for me to hold. “I thought I knew what I needed to do, Winnie. I was prepared for a transplant, even though it sounds horrible. Now I don’t know.”

  How could I have been so stupid?

  Nancy needed a narrow focus, a clear direction. I’d asked too many questions, and many of Dr. Peterson’s answers, though honest, highlighted that we were in uncharted waters. We were in an unknown sea with waves crashing all around us. I had made a big and unforgivable mistake. I’d allowed Nancy to see the uncertainty of her treatment.

  “I am so sorry, Nancy.” I wanted to cry, scream, to somehow rewind the meeting. I wanted to start the meeting over, in the hall—without Nancy. I’d decided on my own that a transplant was a viable option and that Salt Lake City had a respectable program with a good leader. I knew inherently that Nancy, like me, was impressed with Dr. Peterson.

  I simply didn’t know what to say.

  “Nancy, think of it this way. We have two good options, not just one. If they don’t find a match for you, we still have a reasonable chance . . .”

  I’d run out of words. I’d messed up. Nancy now looked more concerned—not less. I hugged her upper body that was limp in my arms. Minutes passed.

  “Winnie, it’s time for you to go. Jayna will be here any minute and I don’t want you to be late for your ride.”

  Already, Nancy had shifted gears. She was worried that I might miss my daily mountain bike ride with Chuck English in Park City.

  “But . . .”

  “No buts. Get going. I need some alone time.”

  So did I.

  My mobile phone rang just as I was leaving the Salt Lake City valley, starting the climb toward Parley’s Summit. I couldn’t help but notice that the mountain pass was already covered by scrub oak displaying multiple shades of red—a harbinger of fall. A familiar caller ID appeared as I answered, “Hey, sweetheart. What’s happening? Are you all right? Do you forgive me?”

  “Winnie, I love you more than I can say. And I want you to know that I’m fine. I’ve recovered. We have two good options. I accept that. I’m sure one of our two options will make itself clear to us. And I’ll be ready.”

  Thirty minutes later, I arrived in Park City. My spirits had risen more quickly than the mountain road that connected my hospital “home” with my real “home.” The newly colored leaves were even more vibrant at the higher elevation and their beauty mesmerized me. My phone rang again. The same caller ID appeared on the screen.

  “Guess what I just did, Winnie? I rode the exercise bike for half an hour.”

  Nancy’s report magnified her previous words. She was communicating in a different way—I’ll be ready. Once again, worrying about me. Once again, giving reassurance.

  Nancy is more beautiful than the leaves of fall.

  Summary: We talked with the transplant surgeon. We really liked him and what he had to say. Our decision is not yet clear-cut. Neither of our two options—continue chemotherapy or undergo a bone marrow transplant—is, in Nancy’s case, clearly better. Thanks for your ongoing and continued encouragement. It will give us the needed strength to move forward together.

  Love,

  Winnie

  In Search of Mecca

  September 28, 11:35 p.m.

  Dear Friends and Family,

  My apologies.

  It has been awhile since I’ve written you, but this update is positive.

  Nancy made it through her six doses of AraC with no untoward effects. Similar to last time, her AraC chemotherapy caused a bone marrow crash, leaving her immunocompromised and anemic. (Just as it is supposed to do.)

  Tomorrow Nancy will return home and there is other good news, too.

  Nancy feels relatively decent. Even though this was her third round of “poisons” (as chemotherapy drugs are nicknamed), her stay this time was uneventful and benign. As before, there will be no oxygen tubes or IV medicines during our home “vacation.” Her medical team does plan to leave a permanent IV line entering Nancy’s right upper chest. (Thankfully, for now, it’s inactive.) The only reminder that she’s survived another bout with her life-threatening disease will be the changing of her IV dressing once a day. (That, of course, and the cute, fuzzy head Nancy will see when she looks in the mirror.)

  The other evening as our entire family was celebrating the final night of round three, Jayna put it very simply: “Mom rocks. She’s got this chemo thing down.”

  What’s next?

  Our transplant pursuit continues as we await news of a willing and more refined match from the twenty-one potential donors identified by the National Marrow Donor Program.

  When (and if) we receive word that Nancy has a bone marrow match from an unknown donor, we will have three questions to address:

  1. Do we attempt the transplant or instead do two more rounds of chemotherapy?

  2. If we decide to go for a BMT (bone marrow transplant), do we undergo what is termed a “full” transplant versus a less toxic procedure called a “mini-transplant”?

  3. If we do go the transplant route, where (the University of Utah in Salt Lake City vs. far away from home) do we go?

  Each question is serious. Each question has major implications.

  As we get ready to leave for home tomorrow, Nancy is feeling about as normal as anyone can with leukemia. Before this last hospitalization, another negative bone marrow test confirmed that Nancy is still in remission. Being in remission is essential to any decision. And being in remission means there is still a chance to overcome whatever long or longer odds we face.

  At this point, if we could write our own script, we’d continue indefinitely along our current path. We’d spend three quarter of our days on the Cancerland floor of the hospital doing treatments and spend the balance of our days in Woodland. (We would still call it “vacation.”)

  Even though our lives would have changed drastically, we’d never look back. We could be satisfied with
our current routine and not ask for anything more.

  As long as Nancy is not suffering . . .

  However, we don’t have that choice.

  It’s time to look forward.

  It’s time to think and plan.

  It’s time to not only consider but also choose.

  We will do our utmost to determine which treatment best fits Nancy and our family. A big decision is no longer an undertaking for the future.

  The time is now.

  On October 2, Nancy and I will seek a second opinion at the world’s largest transplant center, the Fred Hutchinson Cancer Center in Seattle, Washington. It’s a bit frightening to know that Nancy will have to transit through two airports filled with lots of people and their accompanying germs.

  Our trip will be uncomfortable for Nancy. Her hair is still nonexistent. She will be self-conscious about an IV line that could be visible unless she wears clothing that hides it. There will be many issues and problems that I can’t yet imagine.

  My first cousin Dr. Richard Winn, the chairman of neurosurgery at the University of Washington, has arranged for us to meet with his friend Dr. Fred Appelbaum, a world-renowned bone marrow transplant expert and deputy director at the Cancer Center—the birthplace of bone marrow transplants. The center is widely regarded as the “Mecca” for blood cancer research and treatment. We are hoping that Dr. Appelbaum will have answers to our questions.

  Both our attending oncologist (Dr. Morton) and our local transplant specialist (Dr. Peterson) have polled other experts regarding the two treatment options: continuing with chemotherapy only or, if a good match can be found, undergoing a transplant. Unfortunately, the respondents were divided about equally. This leaves us with even more questions than when we began our journey.

  Will Dr. Appelbaum tip the balance?

  Will he be able to answer which type of transplant is best for Nancy?

  Will we need to relocate our family to Seattle?

  Tough questions will be a fundamental part of our difficult trip ahead. However, in the intervening time, we’ll savor the splendor of fall in the Uinta Mountains, hoping these next two weeks are filled with bright sunshine, colored leaves, and our dearest of friends.

  Summary: Though it is risky, Nancy and I will travel to Seattle in a few days to meet with the transplant experts at the world’s original and most famous transplant center.

  With love,

  Winnie

  Perfection Is in the Numbers

  September 29, 8:13 p.m.

  Dear Friends and Family,

  Today is Nancy’s first full day home.

  As is my usual habit, I woke up this morning at 7 a.m. My face was warmed by bright sunshine streaming through the sliding glass doors that make up the south side of our bedroom, as I lay in bed quietly not wanting to wake Nancy and thinking about where life has taken me in the past months of Nancy’s illness. I felt rested, more so than in weeks. Together, Nancy and I were in our bed. We were comfortable together. There had been no interruptions for vital signs. There had been no pills or blood work to awaken us at 5 a.m. There had been no sounds outside our room, save the sweet gurgling of the brook just beyond the deck. I wasn’t surprised that Nancy was still asleep.

  After a while, I decided to embrace the luxury of laziness, so I simply watched Nancy dream for the better part of a half hour. It is a beautiful sight to see her peacefully breathe in a normal fashion. I daydreamed about the many things she and I might do today. Thinking about the simple rhythms of our life together and the freedom of being home almost brought me to tears.

  When the sunlight crept to her side of the bed, Nancy opened her eyes. I rubbed her head. “Good morning, sweetheart. What are your thoughts on the day?”

  “I want to feel what it’s like to walk places without dragging an IV pole around. I want to go there.” Nancy pointed toward the glass doors through which we could see the flowers on the deck and the grove of aspens at the river’s edge.

  “But I do have one thing to do today. I have to go to Salt Lake City and help Jaret with a paper that’s due tomorrow. It’s funny, I’m really looking forward to the drive down to the city. It will be exhilarating to drive again.”

  “Okeydokey. Then turn away from the sun and take another nap. I’m going to make you breakfast and serve it to you in bed.”

  “What are your plans, Winnie?”

  My mind replied, “To whisk you off to Morocco for a ride on a camel.”

  Unfortunately, my mouth conveyed a completely different comeback: “I have a dentist appointment this afternoon, and after that I’m planning to ride with Chuck. I might get my hair trimmed if Stephanie can fit me in. I need to stop at the bank . . .”

  So much for being lazy, I mused, “Oh . . . And if you can believe it, Emmy is making us dinner again, so I’ll pick that up while I’m in Park City. I could also make a DVD run if you are up for it. How does that sound?”

  “Great. All of it.”

  Mundane, day-to-day stuff. It’s hard to believe. Things seem so normal.

  Not long ago, we started a new early morning tradition that I’ve hinted at in previous notes. I now give Nancy countless small kisses across her fuzzy dome each day. “These are sent from your friends,” I tell her, though truth be known, at least half are from me. I give her only one hug, though I make it a very long one to reflect the many friends who end their conversations with me not by saying “Good-bye”—but instead declaring, “Give Nancy a hug for me.”

  This morning, as I wrapped Nancy in my arms, I noticed her eyes close and her mouth form a large grin. And just as I unwrapped my arms and gave Nancy a final kiss, the phone rang.

  “Good morning, Winnie. This is Rachael Beers from the Transplant Unit at the University of Utah. I hope I’m not calling too early.”

  Too early? (Even a 5 a.m. call would be welcomed from Rachael. I have faithfully been contacting her each day the last few weeks, hoping for any news about a possible donor.)

  “I believe that in our last conversation I told you that of the twenty-one potential matches for Nancy identified by the National Marrow Donor Program, I requested seven for the next round of tests. Only five were still available and three didn’t make the next cut—but two did. The last time we talked, those samples were undergoing the final analysis.”

  My heart was pounding as Rachael paused.

  “I’ve got good news, Winnie. We have our donor.”

  What does it feel like to win the lottery? A number of years ago, I watched a TV show about winners, but in all honesty, I was simply not able to grasp the concept. Now I fully and completely understand.

  As Rachael uttered, “We have our donor,” my pulse accelerated and total exhilaration took over. My body trembled and goose bumps appeared everywhere. I effusively and totally embraced Nancy. My hug this time was only from me.

  Rachael continued, “I am allowed to tell you the donor is a male. More importantly, he’s a 10 out of 10 match. That’s the best it can get. It doesn’t get any better than that. Congratulations!”

  By the end of Rachael’s explanation, Nancy and I were jointly clutching a box of Kleenex. Our wait was over. The carefully avoided question of “What if there is no match?” could finally disappear from the far reaches of our minds—forever.

  “Thank you, Rachael! Thank you from the bottom our hearts!”

  “We’ll talk later,” she replied warmly.

  Indeed, we would. A few days later, we were sitting in the University of Utah Transplant Unit with Rachael and her boss, Dr. Finn Bo Peterson.

  The process has begun.

  Summary: The transplant gods have given Nancy a fabulous welcome home present. The National Marrow Donor Program has identified a “10 out of 10” typed donor. A PERFECT match.

  Huge love,

  Winnie

  The Many Kindnesses of Those around Us

  September 30, 11:13 p.m.

  Dear Friends and Family,

  During our ordeal, we’ve been
forced to make continual adjustments. Almost always, it’s the result of something negative. The changes can be something big or small, like the unexpected lab value that once delayed our hospital discharge, or the very depressing revision to Nancy’s initial diagnosis, or the constantly changing percentage concerning Nancy’s survival.

  We’ve learned to “roll with the punches.”

  We’ve had no choice.

  After learning that leukemia specialist Dr. Fred Appelbaum could “fit us in as soon as we can get there,” I called Atlantic Southeast Airlines (ASA) to see if Nancy might be eligible to fly on an employee pass to Seattle (even though she was on a medical leave of absence). When I reached her supervisor, Melodie, and explained our situation, she said, “I’ll call you right back. I just need to check a few things with the head of HR.”

  In less than five minutes, Melodie called back: “Great news! ASA will give you and Nancy positive-space, round-trip, first-class passes. We’re all rooting for Nancy.”

  “Positive space” meant we did not have to fly standby as is customary when flying on a pass. “First class” meant comfort. (This rare type of pass is usually reserved for senior executives of the company.) Essentially, ASA offered us free round-trip, first-class tickets to Seattle.

  I was more than a little bit relieved. I had frequently worried about the toll the trip might have on Nancy, and this type of pass would make the trip light years easier for her than I had envisioned. I expressed my deepest thanks to Melodie and ASA. It’s humbling to think that people at a large company like ASA, a Delta Airlines affiliate, would show such kindness.

  But just a few hours later, I received an even more amazing call from Gil Williams, President of Royal Street Corporation, the parent company of the Deer Valley Resort, where I am the longtime medical director. “Winnie,” he said, “Edgar and Polly want to fly you to Seattle on their plane. They don’t want Nancy in an airport full of germs. They want the trip to be as easy as possible for her. When can you leave?”