It turned out Nancy was struck by the same “lightning” bolt.
To my surprise and delight, she answered, “I’d love to . . .”
Subsequently, we spent a magical night talking about life, love, politics, religion, and most of all, each other. Our first date ended as the sun rose, and we continued our friendship and subsequent romance for many months by phone. (Mobile phones didn’t exist back then, so we had triple-digit long distance bills.)
Six months later, having physically spent only twelve days together (because she was living in Boston and I was residing in Yellowstone and then Park City), we tied the knot. Our friends and family thought we were crazy. They were right. As they say, “All the rest is history.” And that was over twenty-seven years ago.
Just as I finished my soliloquy, Nancy opened her eyes again.
“Did I fall asleep?” she asked me.
It’s the time of day when Nancy is weak. Her tiredness can mean her blood count is so low that she needs another transfusion. Or that the wrong combination of her ever-increasing list of medicines is making her loopy. Or that her temperature is elevated. Sometimes it means that her oxygen needs adjusting. Each condition alone can sap her dwindling reserves and make it a Herculean effort for her to just open her eyes. In Nancy’s case, several of these conditions often are in play at the same moment.
About an hour ago, Nancy experienced a “rigor,” the violent shaking that occurs when the body attempts to lose heat during a rapid temperature spike. Some of us have seen our children do it. Nancy is not a child. Our kind and competent nurse, Becky, was visibly flustered when she pulled the thermometer from Nancy’s ear.
“Forty degrees Celsius! Oh! I’ll call the doctor.”
“Isn’t that 104 Fahrenheit?” I cried.
It didn’t matter. Nancy’s temperature was high—extremely high and a reflection of the silent battle somewhere in her increasingly fragile body. Becky left the room and I was left holding Nancy tight, tears streaming down my face.
“It’s all right, Winnie.” Nancy told me between chattering teeth.
I felt powerless. Inept.
I’m a doctor, aren’t I?
I held Nancy ever tighter while Becky returned with Tylenol and more ice. Ten minutes passed, and Nancy fell once again into an exhausted sleep.
Nancy didn’t move for the next hour or so as I sat and watched her chest rise and fall. I visualized for her. I imagined waves sneaking up a white sand beach touching Nancy’s toes as she lay on a towel, basking in the bright sunshine. The air smelled salty and fresh from the breeze off the ocean. It was a pleasant contrast to our sterile hospital room. I hoped my thoughts were transmitted into Nancy’s dream. It was so peaceful on the beach.
Nancy’s eyes opened again, “You didn’t answer me. Did I fall asleep?”
I nodded and stroked her forehead.
“I’m sorry, Winnie. I can’t believe I did that. I’m just so tired.”
“Don’t be sorry, love. It’s much better when you fall asleep in the middle of your sentence than in the middle of mine.”
We both laughed and I kissed the soft stubble above her forehead.
Nancy’s immunity is severely suppressed. The chemotherapy that killed the leukemia, or “bad guy,” cells has also killed the ones she needs to fight off normal and unusual infections. Her situation is akin to “friendly fire.” Without one type of white blood cells called neutrophils, it is common for a germ to attack. Our medical team is now in full mobilization to find the infection and adjust her drugs appropriately.
Just now, Nancy has endured a procedure called a “bronchoscopy.” A tube was inserted down her throat and into her lungs and samples were taken.
In between fevers, Nancy and I are now able to talk and even laugh. But the easiest way for me to see a smile on her face is to read her the news all of you share with us.
We wait and we hope.
Summary: Nancy is much sicker than the last time I wrote. Fortunately, she is lucid and not in pain. Though her vital signs remain stable, she is requiring more oxygen.
Thanks all for your hopes and prayers,
Winnie
Beauty Is in the Eye of the Beholder
June 23, 10:10 p.m.
Dear Friends and Family,
After this morning’s update, I thought it best to lighten the mood with a story I’ve been meaning to relate to you.
“I’m going to be bald and beautiful,” Nancy declared out of the blue.
Though there is no doubt about the latter, the former has not seemed to be part of the picture. Then, all of a sudden last week, Nancy’s hair started falling out in clumps. For the longest time, we have been waiting, even expecting, this side effect from chemotherapy. Still, until Nancy’s statement, we have disregarded the inevitable.
In lots of ways, I am reminded of fall in the Utah Mountains, when I know snow is imminent. “Maybe this year it won’t snow until February,” I tell myself. “It was nearly seventy degrees today.” I know my logic is clouded by my desire for one last mountain bike ride on trails covered with fallen yellow aspen leaves, making them look like the Yellow Brick Road in The Wonderful Wizard of Oz. Then, the next morning, I awaken to two feet of white stuff and I’m searching the back of my closet looking for my warmest coat.
Many of you know that Nancy is a behind-the-scenes, seemingly laid-back kind of woman. She is always the one to stay and clean up after events. She organizes those around her, like me, in her all-encompassing southern style. “Maybe we should do the dishes real fast before we leave,” she whispers in my ear. (Translation: Start helping with the dishes if you want to get home tonight.)
It should not be surprising, then, to hear what happened to Nancy’s stylish blondish locks. I was at work and called Jayna, who had just returned from a run to the cafeteria.
“How’s Mom doing?” I asked, first thing first as always.
Jayna is a saint like her mom. She pretends not to mind me calling every hour or so on the days I am at work.
“Different.”
I clutched the phone tightly, fearing the worst.
“What do you mean, Jayna?”
Jayna’s mischievous giggle tickled my ear and soothed my anxiety.
“I can’t believe it, Dadder. She did it while I was gone. Rebecca (one of our favorite certified nursing assistants) shaved Mom’s head. But she doesn’t look like Charles Barkley, like she hoped. She looks even better.”
And so it was that Nancy jumped into the fray, proudly proclaiming her arrival into the fraternity (or sorority, for that matter) of chemotherapy patients. Was her head shiny? A bump or lump here or there? Resolving bruises? I could hardly wait to see.
So why am I giving you details of an event I mentioned in a previous update?
I simply want to finish the details I omitted about Jaret.
As I alluded to you in previous notes, when Jaret was younger, he’d close his eyes as we passed a cemetery on the way to school. Part of his condition is a near phobia about bones and blood and most things medical. Why he chose me for a dad, I don’t know, but his mother has protected him well over the years from anything predictably unpleasant—like the bald head of a cancer patient.
Hence you can imagine the shock when Jaret entered the room and found his mom—hairless. Not surprisingly, Nancy was not wearing one of her many new hats (deepest thanks for those who have expanded her wardrobe) because of her fevers and resultant need to lose body heat.
“Uh, Mom . . . Uh, uh, what happened?”
“Oh, Jaret, I am so sorry. I forgot to tell you. I meant to wear a hat when you visited.”
Jaret didn’t scream. He didn’t run out the door. He didn’t do anything but hold his mom’s hand, and then he carefully touched the stubble that used to be long and soft and pretty.
“Uh, it looks good, Mom. You’re still beautiful.”
Though Jaret didn’t cry in the room, when I drove him back to his dorm room at Westminster College, he did
shed a few tears. “Do you think Mom misses her hair?”
For some questions, I have no answers.
Summary: I knew I could find at least one positive amid today’s sobering events. Jaret is growing up daily.
Love from Jaret, Jayna, the bald lady and me,
Winnie
It’s All or Nothing
June 24, 11:06 p.m.
Dear Friends and Family,
“What’s my prognosis, Winnie?”
The question didn’t emanate from Nancy, though Nancy and I occasionally discuss such things now. Instead speaking was Megan, the twenty-two-year-old ovarian cancer patient from Park City who is residing just down the hall from Nancy.
Today’s visit was different.
It was just Megan and me in the room. The postsurgical NG (nasogastric) tube has been removed from Megan’s nose and she was celebrating by sending her parents out to dinner so that she could watch Law and Order in solitude.
I’d attempted to leave, but Megan asked that I sit next to her “for a bit.” After I explained Nancy’s disease, including the disappointing change in diagnosis that lowered her odds to 30–40% from the original 70%, Megan looked me straight in the eye and posed that tough question. There was no place for me to hide.
Momentarily, I was speechless.
What could I say to this vibrant young woman, a college graduate of only three weeks?
What words could I craft for someone whose bright future and full life has been redressed in the darkest of colors?
What had her doctors told her?
Her parents?
“Megan, I don’t know the details of your disease. And, to be honest, I don’t want to know”—like with my Nancy, I sometimes choose not to ask questions or to search the medical literature—“With cancer, sometimes you don’t want to think too far in the future. For example, if Nancy needs a bone marrow transplant, her sister and brother are the logical donors. But I don’t want to know yet if one of them is a match. I will only want to know when we are forced in that direction. So I have to tell you that I don’t know the specifics of your prognosis . . . on purpose.”
My too-young friend nodded her head, acknowledging understanding, and I found myself marveling at her long, thick, ink-black hair. Her locks flowed onto her shoulders at the top of her hospital gown like the splash of a waterfall, the ends seeming to curl upward like water hitting a rock. I wondered if she was aware that she would soon be joining Nancy’s fraternity (or is it a sorority?). I wondered how she would feel about being bald. At least I would have the opportunity to tell her she was beautiful.
“That said, your prognosis . . . your numbers . . . they only matter on paper. You are young. You are strong. You are a fighter. Whether your doctors tell you that you have a 90% chance or a 9% chance, for you as one individual—it is all or nothing. Your chance is either 0% or 100%. Many people love Nancy, so I’ve received countless emails and letters. Several have included stories about patients given little or no chance who did beat the odds. For example, one of Nancy’s oldest friends, Annie Alfano from Connecticut, has a son; his name is Eric. He was born with Down’s syndrome and at six developed leukemia like Nancy. The doctors told his mother that he only had an 18% chance of surviving. I’m happy to tell you that Eric just celebrated his seventeenth birthday. Megan, the next few months will not be easy. But you are surrounded by love and will have lots of help. You can do it.”
Megan gave me the largest of smiles as a single tear ran down her left cheek. She sunk back into the many pillows on her bed, her entire body seeming to relax. I kissed her forehead and walked out the door. The tear on my left cheek matched hers.
Now that’s perspective.
My little angel, Megan, all 102 pounds of her, will be discharged from the hospital tomorrow. When her surgical scars are healed in the next few weeks, she will begin aggressive chemotherapy. Her father tells me the latest news is favorable. Most of her cancer was removed by the surgery, so they are hoping the medicine will kill the remaining tumor. Please save a thought or prayer for her.
Summary: Our fellow Park City neighbor is doing better and will go home tomorrow. We are hoping that she will inhabit the small percentage of her disease’s survival rate that does well.
With more love than I knew I possessed,
Winnie
The Answer Is “Super”
June 26, 2:50 a.m.
Dear Friends and Family,
Besides worrying about Nancy, besides inquiring about Jaret and Jayna, many of you have posed the same question to me the past twenty-eight days.
The question “How are you?” has made its way into many of your emails, notes, and letters.
In all honesty, I have been less than direct in my answers. With Nancy lying so sick, how can I describe my sadness, my terror, and my anger?
My guts have churned in turmoil.
My thoughts have railed against demons.
My emotions change as rapidly as Nancy’s temperature.
How can I possibly describe the way I feel?
As a doctor, I often know too much. As the spouse of a soul mate with a complicated life-threatening disease, I know too little. Too many times, the closest one-word description is “horror.” But even that term sometimes seems extremely inadequate.
My basket full of feelings doesn’t easily translate into words, so I’ve hidden them from you as much as possible in order to provide care for Nancy—and support for Jaret and Jayna. In reality, I don’t know that I’ve done a good job of either the hiding or the caring.
In an unexpected way, it has been very hard to realize that you care so deeply about Nancy and me. I struggle with the concept of Nancy and myself—on display. Should I tell you everything? Nancy and I talk at almost any hour on the nights we spend together in Room 842. Whenever she wakens or is awakened by the staff, I make myself accessible.
Our conversations are often short now because Nancy tires easily, but our topics are not those of daily conversation. By this point in our journey, they are intimate. Nancy has affirmed that she is generally satisfied with her life. I always hoped that was the case, but now all doubts have disappeared. Three nights ago, she sat up straight in her bed and out of nowhere declared to me that she is definitely “at peace” and has very few regrets. Of course, a big part of why she told me was so she could ask if I felt the same way. She followed her revelation with, “I am worried about you, Winnie.”
Nancy may wish that she had not made her sister eat dirt when they were kids or that she had handled an issue or two differently with Jaret or Jayna—but those types of things are pretty trivial in the big picture of nearly fifty-seven years on this planet. Last night at around 2 a.m. she went a step further: “Winnie, it’s important to me that you know how I feel. I’ve been extremely lucky in my life. I’m comfortable with whatever the future holds.” Direct, non-southern speak. We held each other for a long, long time.
Nancy has expressed to me that she hates to see others, especially ones we care so much about, “fussing” on our behalf. Don’t take this wrongly. The thought of losing my soul mate is the toughest challenge I have ever faced; still, I know that Nancy, I, and each of you will leave this earth in due time. Even as I write, I have two other friends facing equally life-threatening battles.
Sometimes it simply feels weird and uncalled for that you, our dearest of friends, have offered so many kind words, thoughts, and deeds. Nancy and I can’t help but feel surrounded by your love; except there are times we feel overwhelmed and even unworthy. And I continue to think of Megan, my angel friend, with ovarian cancer at twenty-two. Her plight is truly a tragedy and one difficult to rationally understand. Ours is personally sad and devastating, but Nancy has lived a full and fruitful life. In our situation, Nancy and I may merely be facing the inevitable ebb and flow of life’s forces.
Please don’t think for one millisecond that I don’t want to battle this leukemia to win a few more days, weeks, months, or even years with my b
eloved Nancy. Or that I wouldn’t trade places so she could continue to be “Super Mom” to Jaret and Jayna, the special light to her friends, or the incredible human being she is to the many others she has touched during her life. I will support Nancy and persuade her to fight as hard as she can for as many months or years as necessary.
As long as she is not suffering.
As long as there is reasonable hope.
I share these somewhat random thoughts so you can understand my reticence in addressing directly your simple question, “How are you?”
It is no wonder then that these three simple words, “How are you?” keep me awake many nights. I have always been a positive person. Why not? I live in a wonderful place, have a satisfying job, and, yes, I have a magnificent wife and children.
So for as long as I can remember, my customary reply to “How are you?” has usually been “Super.”
Short.
Positive.
Efficient.
And though probably not listened to by the questioner, my answer has been an accurate reflection of how I most often feel—at least until twenty-eight days ago, when my world dramatically changed.
In guilt and sometimes between tears, I end up revealing my sadness. Perfect strangers sometimes end up crying with me. I constantly struggle about whom and how much information I can or should share. I still haven’t mastered these questions and perhaps never will.
We’re only amid the first skirmish in a long fight against leukemia. But one thing has become clear. I often feel selfish when so many others have problems equally pressing. I’m supposed to be the helper, right? But at least for this one day, at least for the next twelve hours before some new lab test or negative development occurs, I am ready to scream the answer.
To friends.
To acquaintances.
To people I don’t even know.
Night Reflections Page 9