Night Reflections

by Robert Thomas Winn

  I must admit that it wasn’t that long ago that I was overcome by depression when I heard bad numbers early in our battle. As a result, my spirit is somewhat tempered by the several times I have wondered if we were facing the end. Somehow, I knew that with a long stretch of road still ahead—more bumps were likely.

  Last night, after Nancy fell asleep, in an effort to stop my mind from racing, I rewatched a movie called Million Dollar Baby, directed by and starring Clint Eastwood. The title caught my attention because it made me think of the expense of Nancy’s treatment. It is something I purposely have avoided thinking about. Fortunately, Nancy is doubly covered by two fully comprehensive insurances. Undoubtedly, our family has been extremely lucky.

  As I watched my movie, I recalled other films by Eastwood. Some of you are old enough to remember one of his first big successes, The Good, the Bad, and the Ugly. Justifiably, that title is the perfect description of Nancy’s recent encounters with her vital central IV line. So let me begin my story anew by using Eastwood’s title. (But in this instance, I’ll emphasize only part of his title.)

  I’ll call my story, “The Ugly.”

  “Dad, there’s a pool of blood in the dining room. Mom’s PICC line fell out.”

  After a hard day’s work, driving to Salt Lake City sometimes requires maximum concentration. However, when I received a distressed call from Jayna, I almost ran off the road before my medical training clicked in and I responded in a calm voice, “Jayna, are you saying Mom’s IV line pulled out of her arm?”

  “Yes.”

  “And that she’s bleeding from the site?”

  “Yes.”

  “Is she still conscious and alert?”

  “Yes she is, Dadder.”

  “Are you putting pressure on the area?”

  “Uh huh.”

  “Has the bleeding stopped?”

  “I think so. We used almost an entire roll of paper towels. I’m squeezing her arm with both hands and holding it up above her head. The blood isn’t dripping anymore.”

  “Sounds like you’ve done all the right things, Jayna. How is Mom feeling?”

  “She’s hungry. She’s excited to eat the Chinese meal that just arrived. We ordered takeout.”

  “That is encouraging, Jayna. Do you have Mom lying down?”

  “No. She is insistent that she sits in a chair. You know Mommer.”

  “Great job, Jayna. I’m just passing Lamb’s Canyon so I’m about fifteen minutes away from you. Do you think we need to call 911?”

  “I don’t think so, Dadder. I’d rather wait ‘til you get here. All right?”

  “Only if you’re sure Mom’s bleeding has stopped. Is she dizzy or complaining of anything else? Where’s Jaret?”

  “He’s cleaning the floor. Can you believe it?”

  No, I can’t.

  (As most of you may know already before Nancy’s illness, Jaret wouldn’t even talk about blood, let alone get near it.)

  As I raced to get to the apartment, I found myself thinking that I couldn’t believe any of this was happening. Just when I expected to cruise along, to begin enjoying life, Nancy grew germs from the IV line in her chest—the one that enters her central circulation through the large vein beneath her clavicle. It’s scary, knowing a bug was living in her blood, a silent assassin waiting quietly to strike. After eight hours in the hospital, that particular IV line (and the germs on its tip) was gone. The team carefully placed a new one, in her right arm and now, and just a few weeks later, it gets accidentally pulled out.

  “Jayna, if anything changes, if Mom gets dizzy or the bleeding starts up again or anything else, call the ambulance immediately—then me.”

  By the time I arrived at the apartment, I was second-guessing myself.

  Should I have insisted Jayna call 911?

  Could we have prevented this somehow?

  Did I tell Jayna and Jaret how well they reacted?

  And the biggest question, how is Nancy doing?

  My answer came quickly. As I rushed through the door, heart racing and legs wobbly, there was Nancy sitting nonchalantly at the table in the dining room. Her right upper arm, the one that had formerly contained the IV, was wrapped in paper towels. In turn, Jayna was firmly holding Nancy’s arm in her two hands. At the same time, Nancy’s free left arm was quite busy as she scooped bite after bite of a variety of Chinese delicacies into her mouth from an endless array of square white cardboard containers spread across the table.

  “Hey, Winnie, what’s happening? Sit. Sit. You look harried. You probably need an egg roll before we head to the hospital.”

  There was no choice. I burst into laughter as I watched Nancy savoring each and every spoonful of Chinese takeout. She was the picture of calm, a stark contrast to Jaret and Jayna standing on either side of her looking like they were watching Friday the 13th.

  “I can’t figure out what happened, Winnie. My line was clipped to my pajamas like always. All I did was take off my robe so I could eat. Gremlins must have yanked it out.”

  Nancy’s message was obvious. No worries here, Winnie.

  “I’ll take that egg roll, Nancy. Actually, give me two.”

  Summary: We continue to joke our way through challenges whenever possible. When Nancy accidentally pulled out her IV eleven days ago and bled all over the apartment, we were given just such an opportunity.

  Warmly,

  Winnie

  The Good, the Bad, and the Ugly

  March 12, 5:32 a.m.

  Dear Friends and Family,

  As promised yesterday, I will now continue with my story titled “The Bad.”

  Two days after the Chinese takeout blood bath, we seemed to be back on the right path. Nancy sported yet another new IV, this time higher up in her right arm. We began preparing for our move to the mountains. We were also enjoying a visit with Linda, Nancy’s sister from Atlanta.

  Thinking it would be a quick and routine visit, Linda took Nancy to her early weekly doctor’s appointment. (Jayna and I slept in, taking the morning off.) Unfortunately, I didn’t get to sleep long, as my phone rang at about 8:30 a.m. “Hey, Winnie. It’s Linda. Renae, the nurse practitioner at the clinic today, wants to know if you did something different this morning when you drew Nancy’s blood.”

  Though I did go back to sleep, that was only after drawing Nancy’s labs before she went to the hospital. Since it saves time, I have become the “phlebotomist” as part of our daily routine.

  “No, I don’t think so. What’s wrong?”

  “Nancy’s hematocrit came back low—20%.”

  “You’re kidding. That’s not low, that’s extremely low. It’s never been 20%, even when she was unable to make her own red cells. In fact, they gave her blood transfusions whenever it dipped below 24%.”

  “They’re rechecking it right now. If it comes back the same, she’ll be given blood immediately. I’ll call back as soon as we hear something. Also, Nancy says to stop worrying—and to not wake Jayna up or say anything to her when she does get up.”

  The next hour was filled with gloomy thoughts and a queasy nervousness. As I paced the floor, I wondered: Could Nancy have lost that much blood when her IV came out two days ago? Did I screw up when I was drawing the labs this morning? (The only other likely causes I could think of were disasters—like, “I’m sorry, Winnie. Nancy’s leukemia is back.”)

  Practically, I hoped for a blood draw “snafu.” I wished that the recheck of her blood count would weigh in around 30%, lower than the 42% for the general public—but “normal” for Nancy. I searched for clues like a detective. I even examined the materials that I had put in the trash. I retraced every step from the entire morning looking for blood on the floor. And not surprising, I thought about Nancy and our future.

  Yesterday, Nancy was tired. Still, she did homework with Jaret for over seven hours. I had been exhausted just watching. Nancy hadn’t worked like that since before her first hospitalization. I rationalized that her hematocrit couldn’t be
20%. Nancy would have fallen asleep by simply walking to the bathroom. Even simple things, like brushing her teeth, would have required too much effort. Yesterday, when Jaret proudly displayed his finished paper, Nancy’s smile matched Jaret’s. Neither of them appeared exhausted. The low number had to be from something I did.

  Finally the phone rang. “It wasn’t you, Winnie. The redraw confirmed Nancy’s hematocrit—20.4%. We’ll be here a while. They’ve ordered two units of blood STAT. For so few red cells, they can’t believe how good she looks.”

  Summary: Even this far removed from her transplant, we are reminded once again that Nancy’s health is fragile.

  With love,

  Winnie

  The Good, the Bad, and the Ugly

  March 12, 9:18 p.m.

  Dear Friends and Family,

  When I wrote you this morning, I got so emotional that I sent my note before I shared the last part of my trilogy.

  So, here is “The Good.”

  After a week had passed following the low blood count episode, I kissed Nancy’s fuzzy head at ten o’clock one morning, an hour earlier than our most recent custom, and said quietly, “Wake up beautiful, it’s time to get ready. I need to borrow some blood.”

  “Borrow?”

  On the ride to the hospital for her follow-up appointment, I wondered what would happen this time. Nancy’s serenity didn’t extend to my side of the car. She grabbed my hand. “Today will be a good day, Winnie. Don’t worry.”

  Her eyes sparkled so intensely I partially swerved onto the shoulder for a moment. “Relax,” she commanded. “And try not to hit anybody.”

  How does Nancy always sense my feelings? And soothe them.

  Predictably, Nancy was right again. When Malinda, our nurse practitioner, knocked on the exam room door and walked into the room, her eyebrows were raised and she immediately shook both our hands. “Your labs are perfect, Nancy. You are finally drinking and eating enough. And the best part is that your blood cultures are negative. The bug is gone. There’s no more need for IV antibiotics. You know what that means?”

  With a controlled pull and immediate pressure, Nancy’s IV line was removed. Her constant companion came painlessly out of her arm, and there was less than a drop of blood lost.

  “There,” Malinda said as she threw the tubing into the red garbage can designated for medical waste and took off her gloves. “How long has it been, Nancy?”

  “Let’s see. I’ve had one IV or another most of the time since my first admission—I guess that was May 29. I can’t even remember what it’s going to be like to take a shower without it. I always had to worry about getting the site wet and causing another infection.”

  The good, the bad, and the ugly.

  For over nine months now, Nancy has crawled, limped, or charged through the bad and the ugly to reach the good. The day after her IV was removed, we packed our belongings and left Salt Lake City for our return to the mountains. We had barely walked through the door of the Marshalls’ home, where we were to spend the next month, when Nancy shed her clothes and raced into the shower of their master bedroom.

  “You all right, Nancy? You’ve been in there a long time.”

  All I heard was a guttural sound: “Ahhh!”

  Through the fog-covered glass of the shower door, I could see that Nancy’s entire body was adorned in soap. Water streamed down her face and jumped from the edges of her mouth. Her lips were widely separated and her pearly whites dazzling despite the increasing steam that was rapidly engulfing the bathroom.

  She is amazing.

  And I could also hear Nancy’s uplifting laughter and see her beautiful smile beneath the water streaming off the tip of her nose on to the bathroom tile below.

  Summary: The last few weeks have been a time of guarded triumph tempered with a dose of reality. Generally, our path has been upward, figuratively and literally. After all, this week we returned to our beloved mountains. For the next month, we will be living in our friend’s home in Pinebrook, a housing development just over Parley’s Summit. Our friends, the Marshalls, are vacationing in Florida for the month of March and they have graciously offered us their home with its ever-present warmth. The Marshalls’ home is a wonderful intermediary stop on our journey back to Woodland and is within easy striking distance to the hospital—if needed.

  Much love and thanks,

  Winnie

  This Isn’t Our First Rodeo

  March 24, 6:46 p.m.

  Dear Friends and Family,

  When Nancy awoke one morning last week, her report was not favorable.

  “Winnie, I just don’t feel right. I’m not hungry—even water tastes bad. All I want to do is sleep. What does it mean?”

  The previous four days had seen a gradual decline in our “vacation.” Each night after work, we still talked and relaxed by a roaring fire. Fortunately, Nancy could still stay awake for the final credits of the video I rented each day—but there were no more trips to the market, no visits to the nearby outlet mall, and no back-booth, off-hours restaurant meals. In fact, Nancy’s oral intake had become an increasing concern.

  “Are you nauseated, Nancy?”

  “Had any cramping?”

  “How about vomiting or diarrhea?”

  Each of Nancy’s replies was an unpleasant shock to me.

  “Actually, yes . . . I didn’t want you to worry, Winnie. I didn’t think it was a big deal.”

  I knew differently.

  “We need to call the transplant team, Nancy.”

  By that afternoon, Nancy was readmitted to University of Utah Hospital, and the elevator ride to the Fifth Floor was once again filled with unpleasant memories. I was sad, devastated, and even frightened, too.

  “Everything’s fine, Winnie. I’ll feel much better once I’m rehydrated. And a PICC (central IV) line isn’t so bad. It will help us get home sooner. This isn’t our first rodeo.”

  How does she do it?

  We were so close—a week away from our Woodland home. We had discussed our first meal there, our first visitors, and our first walk by the river.

  Thankfully, the medical team quickly discovered a treatable GI bug. Once again, there is no evidence of graft-versus-host disease on the small bowel biopsy. In return, Nancy gave up the freedom of an IV-free shower, but we were able to return to the Marshalls’ home in Park City seven days later.

  Once again, Nancy was right.

  Summary: We continue to take one step back for every two steps forward. This time, our “backward” step included a week’s stay in the hospital fighting yet another GI bug. We cannot wait for Nancy’s new immune system to gain full strength.

  Best,

  Winnie

  The Best Laid Plans

  March 31, 7:04 p.m.

  Dear Friends and Family,

  Nancy has lots of books. Before her illness, a paperback was almost always in Nancy’s delicate hands or close by on the nightstand. Unfortunately, our home has only so many tables and so many niches. Our single small bookcase has always resembled my stomach after Thanksgiving dinner—too full.

  All that changed today, March 31.

  “Well, Nancy, how does it look to you?”

  I opened the front door to Woodland for Nancy and waved my hand like a bellman as she walked into our home. Her steps were confident and her smile filled her face. As she entered the mud room, she clapped her hands and I heard a playful giggle.

  (Today wasn’t April 1 and it certainly was no joke. For me, it was a combination of Thanksgiving, my birthday, and the spring season’s first mountain bike ride—all wrapped into one.)

  The last time Nancy passed through the door to our home was 156 days ago. Five months, two weeks, and one day exactly. After Nancy left for her transplant hospitalization on October 17, she had never returned to our mountain dream home. I could only imagine what it must be like for her. My palms were sweaty like on our first date, and Nancy’s eyes darted in all directions, taking in all that was familiar.


  “Everything looks fantastic, Winnie. I can tell the cleaners were here this morning. It even smells clean.”

  (I momentarily considered telling Nancy that “the cleaners” were two of her dedicated friends, Janis and Joannie, rather than hired professionals but chose not to as attention of this sort is hard for my Nancy.)

  “And the windows sparkle? You got them washed, didn’t you?”

  (Indeed. I did. It’s worth every penny to see your eyes sparkle even more than the glass.)

  “And look at the plants. They made it! I’m so surprised.”

  (Me too. One of many things I’ve learned during your illness, Nancy. I actually now know how to water a plant—not too little and not too much.)

  Nancy walked to the edge of the living room and made a loud sigh of contentment and relief. For several minutes, she gazed at the river and trees through the full-length windows. Both the lawn and the aspen trees were frosted with a new coating of snow tinged with the slightest hint of orange, a reflection of the impending sunset.

  As she returned to me on the other side of the room, Nancy touched the back of a chair, straightened a book on the coffee table next to the couch, and ran her hand over the soft comforter draped on the back of the recliner. She gestured to the Christmas tree and laughed softly. The twinkle of the tree lights stood out brightly for her homecoming. She didn’t have to ask because she knew already that for me, today was better than Christmas.

  “I think I might take a nap,” Nancy mumbled as she began to move slowly toward the bedroom.

  “Can you believe what everyone did along the road on the way to the house?”

  “How many ‘Welcome Home’ signs were there between Francis and Woodland?”

  “Who brought the balloons and put the food in the refrigerator?”