Night Reflections

by Robert Thomas Winn

  After the next ten day’s chemotherapy ordeal, she will receive her MUD (matched unrelated donor) transplant. Many of you have asked if a bone marrow transplant is an actual operation. It is not. Rather than an actual surgery, Nancy will receive her new bone marrow cells via an IV catheter that enters a large vein in her chest, just like any other medicine or the many blood and blood product transfusions she has received in past months. Quite miraculously, the special donor bone marrow cells will know where to look for a “new home” outside of Nancy’s bloodstream.

  Once inside Nancy’s bones, we will need to wait for an “engraftment.” This is where the donor’s bone marrow cells will, with any luck, replace Nancy’s natural bone marrow tissue that should have been “destroyed” by the potent chemotherapy. During this period, once again, Nancy is at great risk for unusual “opportunistic” infections as well as bleeding.

  At this point, Nancy will have zero natural immunity, zero natural ability to clot her blood, and zero ability to make her own oxygen-carrying red blood cells. She will survive on blood and blood product transfusions for up to three weeks. The earliest Nancy might be able to leave the hospital is four weeks after her transplant, though six weeks is probably more realistic (and only then if there are no complications). We’ve been quoted a 20% death rate during this first, critical phase.

  When Nancy leaves the hospital, she will move to an apartment that we’ve rented in the Sugar House area of Salt Lake City, about eight minutes from the University of Utah Hospital. Our transplant “contract” requires us to stay close to the hospital for a minimum of three months because the critical landmark of success is one hundred days post-transplant.

  The major worry during this “out of the hospital” post-transplant period is something called “graft-versus-host” disease, a condition where the donor graft attacks the body it has entered after the transplant. During these three months, we will be monitored very closely with frequent outpatient visits to the Blood and Marrow Transplant Clinic (BMT Clinic). On the day of our recent orientation meeting, we visited the BMT Clinic and witnessed a lot of bald folks wearing specialized masks to avoid infection. (At this point, we can’t wait until Nancy has her very own anti-infection mask.)

  So that’s the summary for the next leg of our journey. Not surprisingly, we have no doubt it will be a very long and very difficult road to travel. But Nancy, as best as I can tell, seems prepared for what lies ahead.

  As I turn to look at her now as she slumbers beside me, I observe a whisper of contentment on her lips that shape a faint grin. I wonder if she is dreaming of her eventual return to our comfortable bed, her health fully restored?

  I dream too, but my dreams are “day” dreams. (I am experiencing a nervous period where I have great difficulty sleeping, so I daydream instead and try to picture her prospects the way I want them to be.)

  We are about to take a very big risk.

  We hope to win big.

  But today, the mountain seems steep and the climb very long.

  I can’t yet see the top.

  When I “dream,” I force myself to imagine snowflakes lightly floating outside our Woodland home’s bedroom windows, covering the trees’ bare branches like the softest and fluffiest of frosting. I gaze at Nancy beside me and concentrate on how it will feel to share a white winter wonderland when she comes home to the bed in which she now lies. At best, it will be a long time from today.

  As I’ve said to you before, I’ve never much been one to anticipate my next day off, my next vacation, or even my next special event. Living in such a wonderful place as we do, I’ve been too busy enjoying the present to anticipate the future. Not today. It is a different chapter in my life. I want the next one hundred days to pass like a quiet storm in the late evening. I want to wake up from my “dream” to bright daylight as if nothing happened during the dark hours of night.

  The address of our new home will be: Nancy Winn, Patient Extraordinaire, 5th Floor (I’ll send the exact room at some point), University of Utah Hospital, 50 North Medical Drive, Salt Lake City, Utah, 84132.

  P.S. We will be unable to find out much about Nancy’s donor for one year. As part of the donor-recipient agreement we signed with the National Marrow Donor Program (NMDP), we are limited in finding out more about her donor. Likewise, he knows little about Nancy. With mortality rates so high, the NMDP feels it is best to reveal only the most basic information to either party.

  But we do know this: The NMDP did reveal that the donor is a male, with A-positive blood type. Thankfully, we know he consented to give us his stem cells removed directly from his bone marrow. We asked for this method because this technique of collection carries a lower likelihood of graft-versus-host disease.

  Without doubt, it is crystal clear to us that Nancy’s donor is truly our “angel.” Please send him your extra positive thoughts, appreciation, and gratitude.

  Summary: Nancy begins her ablative chemotherapy in four days, and (if all goes well) we will reside in the hospital for four to six weeks and then live near the hospital in Salt Lake City for three months before returning home.

  With love,

  Winnie

  The Last Supper

  October 17, 8:44 p.m.

  Dear Friends and Family,

  Last night, the entire family ate our last dinner at the Market Street Grille, a Salt Lake City seafood eatery that is one of Nancy’s favorites. We thoroughly enjoyed every bite. Nancy savored the Chilean Sea Bass she ordered, Jayna inhaled a huge plate of fried oysters, and I ate the Outer Banks Sea Scallops. Jaret, who doesn’t like seafood, ate several loaves of bread and found a pasta dish he could devour that was devoid of fish.

  As we sat together at dinner, we shared the unspoken knowledge that it would be a very long time before we would eat together again as a family. Surprisingly, Nancy celebrated with an inexpensive glass of “house” Sauvignon Blanc, stating, “My taste buds still aren’t recovered enough to order a lavish ‘vintage’ wine.” Even so, we still clinked glasses numerous times as each of us told and retold stories. All in all, it was an entirely relaxed and peaceful evening. On this bittersweet night, as each of us harbored unspoken fearful thoughts and unspoken feelings of melancholy, Nancy’s wine glass was never half empty. Rather, it was always half full.

  After leaving the restaurant, Jaret returned to Westminster College, while Jayna, Nancy, and I slept in the recently rented Salt Lake City apartment located in the Sugar House area of Salt Lake City. From there, it’s an easy eight-minute drive to the University Hospital. (We have leased the apartment because Nancy is required to live close to the hospital once she is discharged after her transplant. We don’t know exactly when that will occur until she is released. So we want to be sure we have secured housing for that much-anticipated event.)

  Unexpectedly this morning, I awoke feeling like a night hobgoblin had beaten me with a sledgehammer. Every bone in my body ached, and each time I stretched out, another area of discomfort was revealed. I don’t know if I slept poorly on the new bed or if I consumed too much wine. In reality it doesn’t matter, though. There is only one thing on my mind: What is Nancy feeling?

  I was stunned when Nancy greeted me with, “I don’t want to go, Winnie,” instead of her typical “Good morning.” But before I could dislodge the too-large grapefruit that was in my throat, she added, “Just kidding. You take the first shower.” Her face looked calm and her smile genuine.

  When I returned a few minutes later, still dripping beneath my towel from my quick shower, I was expecting Nancy to be savoring her last moments between the sheets. Or quietly meditating in the living room. Or gazing out the window to catch a last glimpse of normalcy—the people, trees, and birds she might not view again for an eternity. But no, she was doing none of these things.

  Nancy was making the bed.

  As usual, she read my expression: “I want to leave it nice for Jayna. She’ll be keeping this bed warm for me until I get out.” (Though Nancy and I have urged
Jayna to return to Vassar for her senior year of college, she will hear nothing of it.)

  “I want to stay with you, Mommer,” she told Nancy.

  Similarly, she told me, “You’ll need my help.”

  (It turns out that our new apartment will have an additional function—Jayna’s classes at the University of Utah are going to be only minutes from the hospital. It seems that Nancy’s “recovery” apartment is also going to be Jayna’s “dorm.”)

  In the car on the way to the hospital, Nancy reiterated, “You know my only worry?”

  I do know.

  It’s not pain.

  It’s not fear.

  It’s not uncertainty.

  For what seemed like the thousandth time, she earnestly and matter-of-factly said, “I need to know that Jayna, Jaret, and you will be all right. If things don’t go well, I need to know that you will take care of them. And that you will look for happiness wherever and with whomever without the memory of me holding you back.”

  “What about you, Nancy? Aren’t you scared?”

  Silence blanketed the car.

  “A little, Winnie. But not as much as you.”

  The soft kiss Nancy placed on my cheek was especially warm today. And I found comfort, strength, and courage in her concern and love for our children and me.

  Summary: Today Nancy entered the hospital for her transplant. It is hard to believe this day has arrived. She seems prepared.

  All my love,

  Winnie

  The Transplant Shuffle

  October 18, 8:02 p.m.

  Dear Friends and Family,

  Day one of Nancy’s “ablative” chemotherapy is, in reality, day two of this hospitalization.

  Nancy’s body is experiencing a new drug named Busulfan, an especially toxic poison. As the strongest chemotherapy drug currently available, it has a singular purpose: it must totally obliterate Nancy’s natural bone marrow, thereby ridding her body of any residual leukemia. (Consequently, I’m only going to work three days during these first two weeks.)

  Today, as I headed to Salt Lake City after a full day of seeing patients at the office, I felt absolutely and completely sick to my stomach. By the time I would arrive, Nancy would be finishing her third dose of Busulfan. I didn’t know what to expect, and I’d read and heard about all the negative possibilities.

  Would I find Nancy wrenching continuously?

  Would her mouth be full of sores?

  Or worse yet, would her liver, kidney, or heart be showing potential devastating side effects?

  Leukemia is a psychologically rough cancer. Whenever a leukemia patient achieves a remission, the patient feels nearly normal. But feeling normal makes it harder to face an uncertain future, particularly when it can mean a return to truly difficult times.

  When I saw Nancy yesterday, she was in the middle of her third remission. She was feeling good. She was feeling strong. Her fuzzy head is the only thing that reminds her that she has a life-threatening disease—that and the elevator ride to the top floor of the hospital that also reminded her that she was once again going to be on the “floor nearest to heaven.”

  To my surprise as I entered “heaven,” joyfulness filled the room. Jayna was taking a movie of her “Moo.”

  “Dad, come dance with Moo. She’s doing the transplant shuffle.”

  For several minutes, Nancy and I “twisted and turned” just like Chubby Checkers. We kissed once and then we kissed again, Jayna recording it for posterity. It was magnificent and, at least for the moment, Nancy is doing fine.

  Summary: We have survived the initial first two days in the hospital and Nancy’s first day of toxic medicines. We danced and Nancy has promised that if she makes it through our ordeal, she will reprise her ballerina role in our new original staging of the ballet, Transplantland.

  All my love,

  Winnie

  Luck Is Believing You’re Lucky

  October 19, 9:57 a.m.

  Dear Friends and Family,

  In just a few days, we have settled into Room 507 at the University of Utah Hospital—yet another new home.

  Our room is probably a full third larger than the other various rooms on the cancer floor at LDS Hospital. Significantly, the bathroom is bigger and the closet space is increased dramatically. We now have a mammoth corkboard for pictures, more wall area for decorations, and there is space for not only the rollaway bed but two more chairs.

  We are lucky. To have such a spacious room is really opportune. From what the nurses tell us, we’ll reside here a lot longer than our current record of thirty-nine days, spent in Room 842 at LDS Hospital. (We can use every inch of living area. I suspect there will be nights when the whole family may “sleep over” to support Nancy during her most difficult challenges ahead.)

  The best part, however, is not the room.

  Rather, it is the fabulous view.

  The entire outward-facing wall of our room is comprised of glass. Situated at the top of the east “bench” of the Wasatch Mountains, the University of Utah Hospital overlooks the entire Salt Lake Valley. About ten miles to the west, the barren Oquirrh Mountains jut upward, while to the northwest, the Great Salt Lake extends to the horizon. During the day, it is easy to identify the Mormon Tabernacle, the LDS Church Office Building, the Key Bank building, and other Salt Lake City landmarks. The sunsets are spectacular, and at night the city lights twinkle as far as the eye can see.

  If you can believe it, we even have a remote control to close and open the blinds. For now, though, I only open the blinds briefly when Nancy is in her deepest sleep. Otherwise the blinds remain mostly closed. Not surprising, Nancy is focused inward and the beauty outside our room is a distraction. (I long for the day when I hear, “Winnie, what in the world is going on out there? Let’s open the blinds.” But now is not the time for any distractions, no matter how beautiful.)

  Nancy has been visiting “Dreamland” for the last two hours.

  Me?

  I’ve spent the entire time toying with our room number, Room 507.

  Five plus zero plus seven equals twelve.

  Twelve has never been lucky for me. If only we were in Room 508; the addition of the room numbers would equal thirteen, my basketball number in seventh grade. The pinnacle of my athletic pursuits, when I was a starting point guard in junior high school and we won our local tournament. But twelve? I have never received a dozen roses. The number twelve just doesn’t do it for me.

  Then I decide to look at each number individually.

  Five. I love the number five.

  Five is one of my favorite ages, when a child is just starting kindergarten.

  A five-year-old child is not too shy to give me a hug.

  A five-year-old child will gladly sit on their mom’s or dad’s lap during my exam.

  Five. Now that’s a great number.

  What about seven?

  A traditionally lucky number, seven is definitely lucky for me, especially now.

  Why?

  Nancy’s birth month is July, the seventh month.

  Nancy is definitely tied to the number seven. (It just can’t get luckier than that.)

  And zero?

  That’s easy. It’s the answer to the question now defining our lives: “What happens if Nancy makes it through the next one hundred days?”

  The lucky answer?

  “Zero leukemia.”

  Room FIVE-ZERO-SEVEN.

  A room virtually overflowing with luck.

  Enough luck to share with our neighbors.

  Enough luck for the whole bone marrow floor.

  I need us to be in a lucky room. (We obviously are.)

  Suddenly, I sense that Nancy is awake and I look into her sky-blue eyes: “What?” Nancy blinks three times in rapid succession, adjusting to the bright light in Room 507, “Did I fall asleep in the middle of my sentence or yours?”

  “Neither, love. You finished your sentence right after reminiscing about how expressive Jayna’s face was as a ba
by. Then, I’m sorry to report, you began snoring loud enough to wake up all the patients in the whole hospital. You were really in a deep sleep. I’m sorry if I woke you up just now.”

  “It’s all right.” Nancy opened her eyes wider, trying to better focus on the large, round wall clock opposite her bed. Despite two full days of poison flowing into her veins, Nancy’s eyes still retain their spark and their exquisite beauty. (I could look at those eyes for an eternity, but I will gladly settle for another twenty years.)

  “Is it eight o’clock already?”

  “I really did sleep, didn’t I?”

  “I’m not throwing up yet.”

  “My mouth feels funny.”

  “I have a metallic taste in my mouth.”

  “I don’t feel as bad as I thought I would today.”

  “What have you been doing?”

  “Why such a big grin?”

  “Am I getting that rash again?”

  No you aren’t, Nancy, I thought to myself. The total body, intensely itchy, reddish-orange rash that you developed yesterday is at bay for now. Fortunately, it was an insignificant, though annoying, side effect of the mouth ulcer medicine you took prior to beginning the new drugs. The rash is far more benign than the painful ulcers on the inside of your mouth that could be the potential entry point for a life-threatening germ. Thankfully the rash disappeared as rapidly as it covered your entire body once you finished your medicine.

  After gathering her senses, I proudly related my “room number” game to Nancy, proclaiming, “We’re very lucky to be in Room 507.”

  “I’m glad you think this room is lucky, Winnie. I’ve been worried. The sudden way we moved in made me think the last patient died here. I’ve tried not to think about it, but it’s been a little frightening.”

  When we first arrived at the hospital two days ago, we were initially placed in Room 514, an “overflow” room just outside the Bone Marrow Unit. We were told the floor was full and that we would transfer into our permanent room in a few days.