Night Reflections

by Robert Thomas Winn

  Pointing toward the door, she commanded, “Yes, I’d like another donut. I get to eat anything I want.” Obediently, I raced down the nine floors of steps, two at a time, and then raced back up, too. Nancy literally inhaled both a classic glazed and a chocolate cream-filled donut. She finished both before I could take my last bite of my sugar-covered jelly donut.

  I could watch Nancy eat donuts all day.

  But as is often the case, the roller coaster called leukemia turned downward today, just when we were beginning to feel more positive and comfortable. Dr. Prystas stopped by unexpectedly for a quick report.

  “Nancy, the tests have come back on both your brother and sister. Unfortunately, neither of them is a match. We’ll set up a conference call with the bone marrow experts as soon as possible to explain the implications and discuss what are our next steps.”

  As you might imagine, Nancy and I were disappointed and attempted to play cards to distract us. Not far into the game, Nancy was dealing the cards and told me, “You know, Winnie, my PIC line is a little tender.” (The PIC line is a very special IV that enters a large vein from Nancy’s chest and makes all her treatments easier since it is a large needle capable of allowing lots of fluid to pass through it in a small amount of time. Additionally, it only infrequently has to be changed and does not tie up one of her arms as normal IVs do.)

  When Nancy’s discomfort was explored further by the medical team this afternoon, a blood clot was discovered and the IV had to be pulled and blood thinners started immediately. To make matters worse, Nancy appears to have developed a localized infection called cellulitis at the PIC line entry site. (With Nancy’s immunity at its lowest point, not having a good IV and needing potent antibiotics to fight the infection is not a favorable combination.)

  We’re scared. But Nancy remains upbeat and positive. And we did catch both the clot and infection early.

  Summary: Even with the maximum dose of AraC chemotherapy, Nancy has been cruising through hospitalization two. Until today, she did not have any major side effects—though she has developed another blood clot and a skin infection. She is in the midst of her “bone marrow crash” due to the chemotherapy but remains positive and relatively strong.

  Sincerely,

  Winnie

  An All-Too-Familiar Question

  July 29, 7:20 p.m.

  Dear Friends and Family,

  There’s a common question on the “penthouse” floor of LDS Hospital: “How do you like my bald head?”

  No, the question wasn’t from my Nancy. Our twenty-two-year-old friend Megan, the young woman fighting ovarian cancer, was readmitted to the hospital this morning and is once again our next-door neighbor. Megan’s newest complication is a kidney infection, and she has returned to receive powerful IV antibiotics that must be monitored in the hospital. As a prelude to her first chemotherapy course, she has shaved her beautiful, very thick, very long, very dark hair. But the long strands will not go to waste. Megan has donated them to the American Cancer Society to have wigs made for young children with cancer.

  After admission, our youthful friend laughed and didn’t seem to mind when I walked over and rubbed her fuzzy round dome as I responded to her question, “I love it, Megan. In fact, I’m partial to bald-headed women. I know one in the next room who sends her best.”

  “How is Nancy?”

  Even before I could answer, Megan closed her eyes, and in seconds, was asleep. The bed swallows her tiny frame; she was barely over one hundred pounds before her cancer and subsequent surgery—and now, she is probably just a little over eighty.

  Several minutes later, Megan’s eyes reopened. I knew to continue our conversation as if there had been no pause because Nancy has done the same thing many times when chemotherapy or the disease (or both) have sapped her energy

  “Nancy cruised through her second round of chemotherapy. It was much easier the second time around than it was the first.”

  My chest felt like my heart weighed a million pounds. (Megan’s mother has told me the chemotherapy has started roughly.) I hope her experience in the second round will mirror Nancy’s. Hopefully, Megan will go home tomorrow if there are no complications. Unlike Nancy, whose immune status precludes being outside the hospital, Megan is able to continue her treatment as an outpatient in the oncology clinic. Her prognosis remains very upsetting to me.

  Summary: Please continue the positive energy for the next week or so as Nancy’s immune status will be at its lowest. She and I both truly appreciate it. During the dark, lonely, or frightening times I try to focus on the love you send us. It makes all the difference in the world. Also, if you have anything left over, send it in Megan’s direction.

  With love,

  Winnie

  A Wait Well Worth It

  August 6, 11:19 p.m.

  Dear Friends and Family,

  As a physician, it has been humbling to see how frequently patients “hurry up and wait.” On an intellectual level, I was aware of the concept, but having been healthy, I had never experienced it up close and personal. I liken it to the difference between thinking about the experience of having a newborn baby versus sitting up all night in a rocking chair trying to get the little tyke to stop crying.

  These last few months, I have learned firsthand about waiting. For example, when Nancy had a sore arm from her infection and blood clot during this hospitalization and was taking a strong pain medicine, it was, “Winnie, has it been four hours yet since my last Percocet?”

  In reality, she didn’t have to ask. The distressed expression on her beautiful face was already telling me it must be time for her next dose. The fact is that nothing is harder than watching a loved one suffer—except perhaps seeing that loved one and knowing what to do but being unable to “write the order.”

  It is considerably easier when Nancy asks, “Do you see the lunch trays in the hall yet?” My bride’s voracious appetite this hospitalization is near legendary on the eighth floor. Nancy’s desire for sustenance is much to the delight of her doctors and probably a result of her off-the-chart walking program.

  Today, however, it was my turn to wait.

  At 12:28 p.m. there was still no sign of our attending “main” doctor. I’d already missed breakfast and was beginning to worry that the hot lunch would be at room temperature by the time I reached the cafeteria. (Meals have become a welcome break to the monotony of watching the clock tick while Nancy sleeps.) Still I was afraid to leave; our chief physician was long overdue. For a moment my eyes closed, the memory of another fitful night on the hospital rollaway adding to the heaviness of my upper eyelids. Just as my stomach gurgled loud enough for it to be heard at the nurse’s station down the hall, the door opened and in strolled Dr. Morton.

  “I don’t know how much of a hurry you are to get out of this prison room, Nancy, but I’m thinking maybe tomorrow. We’ll decide in the morning when we see if your white count and platelets continue to go up. If they’re just a little higher, we’ll give you the boot. You’ll have to take oral antibiotics for a day or so though.”

  Is Dr. Morton kidding?

  Is it possible we’ll be in our own comfortable bed by tomorrow evening?

  “That okay with you two?” Dr. Morton raised his eyebrows while tilting his head forward.

  Nancy’s smile matched his. “That would be . . . GREAT.”

  Though most often not the case, this time my wait was well worth it.

  Summary: With little notice, our doctor surprised us with an earlier than expected hospital discharge. Nancy is returning to our sanctuary by the river, where the flowers are still in full bloom and the birds are waiting to make the hospital noises a dim memory. Our upcoming two-week respite should be a fantastic escape. This time, Nancy is unencumbered by medical devices and, best of all, she feels great. Amazingly, she feels better now than when we entered the hospital nearly three weeks ago for round two.

  Thanks for all your love and support during this last round,

  Winn
ie

  It’s Party Time

  August 10, 10:51 p.m.

  Dear Friends and Family,

  Nancy is in a really good place. She doesn’t have any restrictions at this point, except to stay away from obviously ill people. Consequently, she wants to greet all of you who have helped so meaningfully with your kind words, thoughts, and deeds.

  If you are free and can make it, we are having a small get-together on Sunday, August 14, between 1 p.m. and 4 p.m. at our home in Woodland.

  Feel free to bring a fishing pole (if you like that sort of thing) because the Provo River runs alongside and through our property. (I’m told by those “in the know” that the rainbow trout are biting.)

  Light refreshments will be provided, so please don’t feel the need to bring anything.

  We can’t wait to see you!

  Summary: Nancy shocked me this morning and had me send an invitation to our “local” supporters. Obviously, if any of you from greater distances want to witness my bride with a fuzzy head, you are more than welcome to drive or fly in. We have extra beds. And lots and lots of floor space.

  Much love,

  Winnie

  The Numbers Don’t Add Up, Part 1

  August 12, 2:10 a.m.

  Dear Friends and Family,

  As promised in an earlier letter, I have some unpleasant news to relate. I’ve kept my medical update compartmentalized in a corner of my mind until I was feeling emotionally strong enough to bring it to the forefront.

  Up until this point, I mostly live in the present. I concentrate on Nancy’s upcoming meal, her current chemotherapy treatment, or an X-ray that may occur later in the day. Though I plan the next day each evening, I rarely address a future weekend or look ahead to when I might have two days off from work.

  My “same-day-only” planning is about to change. Nancy and I are facing serious decisions. They are not straightforward or easy. There is a fork in the road regarding her care and we must choose which path to pursue.

  Nancy has greatly enjoyed her home “vacation,” especially since she feels “normal.” Unlike the previous time she came home, she has not been tied to an IV or oxygen source. Being “unhooked” has allowed her to walk outside each day amid the trees and flowers, dine with her closest buddies at quiet restaurants, go shopping with Jayna, share popcorn with me at movies, and even host an open house attended by many of our local supporters. (For those of you who couldn’t attend, the party was spectacular; Nancy beamed for hours and had a wonderful time seeing friends, both old and new.)

  During the past week, while appearing to be carefree and fancy-free, we have been gathering information in order to decide whether to continue with three additional hospital-based chemotherapy courses or instead consider an unmatched (i.e., non-sibling) bone marrow transplant as soon as a donor can be identified.

  To put our decision (and story) in context, we need to return to the day before Nancy left the hospital.

  When he entered our room for his daily visit, Nancy greeted our Captain with, “Dr. Morton, I’ve been wanting to tell you something for a long time.” Nancy paused, waiting until she was certain she commanded Dr. Morton’s complete attention and he had pulled up a chair close to Nancy’s bed: “You saved my life. Thank you.”

  “Captain” Morton, our oncologist, is tall, thin, and bespectacled. He appears more like a college professor than a doctor. (Of course, who am I to talk? I once was handed a broom while an intern in the hospital.) Though only in his early fifties, Dr. Morton has barely more hair than Nancy. He always speaks slowly and softly, thereby projecting a gentle demeanor. He’ll discuss his golf game, his son in Portland, and Nancy’s disease all in the same visit. True, Dr. Morton maintains an appropriate professional distance, but after two and a half months, there is a readily apparent fondness toward Nancy.

  As a cancer specialist, Dr. Morton deals with suffering and death on an intimate and almost daily basis. He probably endures more patient deaths in a single month than I do in a decade. But when Nancy, in her straightforward and sincere manner, stated, “You saved my life. Thank you.” Dr. Morton appeared to be in uncharted territory. His face turned bright red and he squirmed visibly in his chair.

  “Uh . . . That’s my job, Nancy. I’m sure your husband does the same kind of thing.”

  (I relate this conversation secondhand from Jayna, who called me at my day job in Park City when it occurred. Jayna sobbed as she related it.)

  “Well, Winnie has saved a few people over the years,” Nancy replied. “But not my life. If he was here, he’d thank you, too.”

  Dr. Morton started to speak but instead rose and made his way even closer to Nancy’s bedside. Putting a hand on her shoulder, he smiled. Nancy returned his smile, a smile I can easily picture from Jayna’s words: Glowing. Captivating. Intimate. And at that point, telling him it was all right to connect more than usual.

  “Thank you, Nancy,” he said in barely a whisper.

  Nancy has always had a special influence on those around her.

  I did arrive at the hospital in the early afternoon, in time to participate in a visit from Dr. Finn Bo Peterson, the transplant surgeon Dr. Morton had consulted, who quickly concluded, “After discussing your case with our team, we recommend you move to transplant as soon as possible.”

  Dr. Peterson explained that he had just reviewed Nancy’s history, lab findings, and two hospital courses. But his conclusion was very different from what we had planned. In fact, it was totally different from what we expected. And most distressing, it was entirely different from what we had been told by Dr. Morton.

  Dr. Morton’s words from yesterday, when I was present for his visit, echoed in my mind: “I recommend going through four courses of chemotherapy and saving any bone marrow transplant for what we call ‘rescue therapy.’ If you relapse, that’s when to consider a transplant. I’m hoping you won’t ever need one.”

  The round of chemotherapy we are just now completing has gone relatively smoothly. Though Nancy did have a superficial blood clot and a secondary infection, we’ve been encouraged because she’s feeling better and stronger than when she entered the hospital. She is poised to leave a full week ahead of schedule.

  But now Dr. Peterson was presenting a wholly different opinion.

  Hadn’t Dr. Peterson talked with Dr. Morton?

  Where I was speechless, Nancy wasn’t: “Dr. Peterson, I’m confused. We’ve been operating under the assumption that a bone marrow transplant was saved for last. And only if things didn’t work out. I think Dr. Morton called it ‘rescue’ therapy.”

  “Well, Nancy. If you have the four courses of AraC chemotherapy alone, unfortunately, you only have a 5–10% chance of survival.”

  Jayna and I looked at each other simultaneously, and a tear immediately rolled down her cheek.

  What was this guy saying?

  We’d just finally adjusted to and accepted the 30–40% chance Dr. Morton gave Nancy after we learned she was not in the 70% cure group for the M3 type of acute myeloid leukemia initially diagnosed.

  How could the numbers change again?

  How could they be so bad?

  My face felt hot. My fingers tingled. Nancy was doing great, “cruising,” according to Dr. Morton. He seemed excited when he anointed her his most “boring patient.” In reality, I wanted to scream out loud. Instead, I gathered as calm a tone as I could muster and said, “Wait a minute, Dr. Peterson. I must be missing something? We’ve been told that Nancy has a 30–40% chance with just chemotherapy. Her leukemia seems very sensitive to the medicines.” Although I consciously tried to suppress my emotions for Nancy, my voice did crack in the middle. Nancy nervously rubbed her arm.

  Dr. Peterson was not fazed by my question or my cracking voice: “Well, Dr. Winn, sometimes there are different ways to look at data. With Nancy’s age and the number of abnormal white cells in her blood when she first got sick, I believe that chemotherapy alone will not be successful.”

  After Dr. Pet
erson’s response, I don’t think I listened much.

  Five to ten percent survival?

  I vaguely recall Nancy confirming our insurance, acknowledging that her brother and sister’s bone marrow tests hadn’t matched, and discussing the next steps in moving toward a transplant. The process sounded long and tedious. I tried to concentrate but kept flashing on the 10% number. I just wanted to get to the end of this encounter.

  When the meeting concluded and Dr. Peterson left, Jayna and Nancy didn’t speak. Instinctively, the three of us hugged as a group, my left shoulder wet from Jayna’s tears, my right from Nancy’s.

  Over two months into this ordeal, and it was only the third time I’d witnessed Nancy’s tears.

  I gently stroked Nancy’s head, which was warm on my chest. She looked at me with still-moist eyes: “I’m so confused. I don’t understand.”

  A single tear ran down her left cheek. “I was feeling positive.”

  How could things keep changing?

  Why hadn’t Dr. Morton and Dr. Peterson coordinated their stories?

  How could we have been subjected to Dr. Peterson’s interpretations without warning?

  A simple “Dr. Peterson looks at things differently than I do. Don’t be too alarmed if he uses different numbers and makes different recommendations. We’ll discuss it later.” would have been nice. Instead, just as we were cautiously proceeding down one path—we fell off a cliff.

  No, we were pushed.

  The three of us remained silent for what seemed an eternity. I paced the room trying to clear my head, to find a compartment for my anger and disappointment.

  Should I call Dr. Morton right now or wait until his visit tomorrow?

  I’m the “sleepover” person, I reasoned, and I don’t work until 3:30 p.m. tomorrow at the clinic in Park City.