“Most leukemics start off treatment pretty well, and at about two weeks, things get a little bit rough. However, with Nancy’s M3 type of leukemia, things are going to get tough right away. I know it’s distressing seeing Nancy struggle, but it’s not uncommon for this to happen.”
I glanced at Nancy beside me on the bed. Her face was mostly obscured by the oxygen mask covering it, delivering 15 liters (or 45%) of inspired oxygen. I wished I didn’t know that 15 liters was a very high concentration of oxygen for any patient to receive. Despite the oxygen, Nancy was working hard just to breathe. Each of her breaths was rapid and labored. Through the mask, I could see that her face was puffy, as were the tissues surrounding her eyes. Worse yet, her futile attempt to give Dr. Prystas a brief smile was familiar to me.
Pain.
My stomach was tied in knots. For most of the conversation, Nancy appeared far away. Dr. Prystas witnessed what I saw as well. She stopped trying to include Nancy in our discussion. When Nancy’s eyes closed, Dr. Prystas motioned for me to join her in the hallway. I squeezed Nancy’s hand and blew her a kiss as I left the room. Nancy’s eyes remained shut. She didn’t squeeze back.
Dr. Prystas closed the door and continued: “Nancy started a new chemotherapy medicine, ATRA, this morning. Though it’s very specific in fighting her type of leukemia, it sometimes causes breathing problems. However, we still have to consider other possibilities. She could have a lung infection. Or she could be bleeding into her lungs from her low platelets. If Nancy gets worse, we’ll put her in the intensive care unit. As I’m sure you noticed, we’re already supplementing her oxygen at the highest level. If it’s not enough or she tires from her increased breathing effort, she may need respiratory support. We’ve asked a pulmonologist to help us.”
I could feel my face flush and my legs weaken. Nancy might be transferred to the ICU? She might need a respirator? A lung specialist will see her? As I connected the dots, I leaned against the wall, in need of support. The unthinkable stared me in the face.
Could Nancy die after a single day of the new treatment?
What happened to the 70% cure rate?
All I could mumble to Dr. Prystas was, “Thanks for keeping me informed.”
Dr. Prystas momentarily put her hand on my shoulder, nodded her respectful condolence, and turned away and headed down the hall.
How could things have gone so wrong, so rapidly?
Last night Nancy looked almost normal. We talked and laughed (and I cried when she fell asleep). She slept the entire night. She shooed me away to work.
But now?
Nancy was far away. And struggling. I pulled my chair close to her bed and put her hand between both of mine. Again. My mind raced.
Will Jayna get home from Peru in time?
Why did I think I could go to work today?
And the one question that has become my daily personal balancing act: Is it time to call Nancy’s mother, sister, and brother in Georgia again?
Summary: Things are not going well right now.
Love,
Winnie
The Power of Determination
June 3, 10:30 p.m.
Dear Friends and Family,
When I wrote earlier today, I felt like the world was ending. It was so incredibly hard to see the love of my life fight for each and every breath. My hands felt like twenty-pound weights; I couldn’t even open my computer, let alone type. I silently prepared for the worst.
Seconds seemed like minutes. Minutes seemed like hours. Nurses and respiratory therapy technicians were my constant companions. Nancy had two sets of X-rays done right in our room because she was too sick to go to the radiology suite. The pulmonologist, the lung specialist, came and went and came again.
His report?
“All of her tests are inconclusive so far, Dr. Winn. If need be, we will do a lung biopsy. In the meantime, if she worsens, we’ll need to intervene. I’ve started her on steroids. They sometimes help in these cases.”
He didn’t elaborate any more than this, knowing I knew what he meant. He didn’t mention that if Nancy had a lung infection, steroids could make her much worse.
Though Nancy squeezed my hand a few times, she mostly continued to be far away. I did notice, however, a different look on her face even though it was swollen.
Determination.
The look on her face transported me back in time to twenty-five years ago. Nancy was pregnant with Jaret. Like many first-time expectant moms, Nancy did everything right: no medicines, no alcohol, exercise, classes about delivery, and books about child development. We looked forward to a “perfect” birth. After talking to her friends who had already experienced labor, reading about different birth methods, and discussing all of the options with my medical partner, Tom Schwenk, who was slated to deliver her, Nancy announced her decision. “I want to go natural, Tom.”
Nancy jogged two miles every morning until the day her water broke. She was physically and mentally prepared for our first child. Her bag had been packed for weeks. As we pulled out of the driveway on the way to the hospital, she declared, “O . . . K,” and gave me a thumbs up. I was frightened. She was not. When we were halfway down the mountain and I glanced at her beside me, I saw “the look” for the first time. I was both reassured and excited.
Childbirth can be fickle. Though Nancy grabbed my hand often and smiled the best she could through her increasingly frequent pains, the labor dragged on and on and on. In fact, she progressed so slowly that I once fell asleep while leaning against the wall. When I awoke minutes later, Nancy’s visage remained unchanged. She was doing far better than me.
Determination.
Two full nurse shifts later, our original nurse from the previous day returned. She was shocked that we were still there. “I didn’t expect to see you. How’s it going?”
I would have answered “not well.” Nancy’s expression reported differently.
Before Nancy could verbalize, Tom entered our room, reviewed her chart, and examined Nancy. His assessment was blunt: “Nancy, it has been a full twenty-six hours of labor. If you won’t let me give you medicine, you could end up with a C-section. That would not be best for you or the baby.”
Thirty minutes later, after an epidural helped relax Nancy, our son Jaret entered the world. And when he looked at his tired but happy mother, I am sure he saw the last vestiges of the same look that I see on Nancy’s face today. Like then, I know that whatever the outcome, Nancy is giving it her all.
Determination.
As the daylight shining through our window began to fade, so did Nancy’s oxygen needs. The nurses began to smile on their frequent visits. So did Nancy. Her face regained its radiance and gradually lost its swelling. Within three hours, her breathing returned to normal. Within four hours, the oxygen mask was gone.
A miracle?
I have learned that in some patients, the drug ATRA causes breathing problems that are transient and responsive to steroids. The miracle is that Nancy is a member of this group. We survived a serious scare, and as the day has progressed to night, the sparkle has returned to those beautiful sky-blue eyes. Needless to say, I have ascended from the depths of fear and depression to near ecstasy in the course of twelve hours.
Summary: Nancy is feeling and looking good again.
Full of love for all those around me including you,
Winnie
Hepburn and Tracy
June 4, 11:51 p.m.
Dear Friends and Family,
With Nancy working as a flight attendant for over thirty years, I have often joked that I could drive to the airport blindfolded.
In our early married years before the 9/11 tragedy, I would wait for her at the gate whenever possible. It was so romantic to have her stroll down the jetway and into my arms. It felt like we were in a Katherine Hepburn and Spencer Tracy movie. Our passionate hugs were soon replaced by those with Jaret and Jayna, who would jump up and down as Nancy deplaned, screaming “Mommy, Mommy!” before leap
ing into her outstretched arms.
Even after access to the gate became a distant memory, it was still special to pick up Nancy after she had been working for several days in far-off cities. It is safe to say that airports in general, and Salt Lake City International Airport in particular, have always been an integral part of our family’s makeup. However, as I drove to the airport today, I could not recall ever feeling more nervous anticipation.
When Jayna emerged from the door outside the baggage claim area, time stood still. Even though it had only been two months since I had last seen her, in the few seconds I had to observe her from afar before she met my eyes, waved, and sprinted to our car, she appeared years older and more mature. Anyone who saw us must have wondered what was going on. We hugged and clung to each other not speaking a word, but both of us had tears flowing down our faces not in single drops but rather in rivers, our bottled up emotions finally having a safe outlet. The security guard approached to tell me to move my car, but seeing Jayna’s face first and then catching my glance, waved his hand in a “never-mind” gesture.
After several minutes of clinging tightly to one another, Jayna spoke, “Can we go the hospital?”
When we entered the room, Nancy was snoring. Jayna looked at me and gave me a “thumbs up” gesture as if to say, “She doesn’t look so bad.” I was so very glad she hadn’t seen her mom twenty-four hours earlier.
Before I could make up my mind whether or not I should awaken her, Nancy opened her eyes, raised her eyebrows, and extended her arms. Jayna was soon lying beside her mom, her head resting on her mom’s chest. Nancy’s nurse entered the room, looked at the scene, handed me a pill to give Nancy later, and left quickly.
Jayna simply lit up the room for both Nancy and me.
The rest of the evening was joyous. The chatter was nonstop, like preteens at a slumber party. Nancy stayed up a full two hours catching up on Jayna’s exploits even though she was tired from the day’s ordeal. Jayna kissed her mom’s cheek and after noticing her mother’s difficulty in keeping her eyes open said, “Mom, you’re tired. Close your eyes. I will be here when you wake up.” Seconds later, Nancy’s body made a now familiar jerk that told me she was already in a deep slumber.
Summary: A small amount of order has returned to our world. Our family is reunited once again; Jayna arrived home this afternoon.
The very best,
Winnie
Random Thoughts in a Dark Room
June 5, 2:00 a.m.
Dear Friends and Family,
When Nancy’s nurse entered the room to check vital signs late tonight, I was startled, momentarily not sure where I was. Wide-awake, I gathered my bearings and decided there was no better time to write you once again than in the quiet darkness. My open computer shed enough light to illuminate a new piece of furniture in our “temporary” home. Our very own rollaway bed. Fast asleep beneath her very own lime-green hospital blanket was Jayna, exhausted from the long journey and the day’s events. The bed’s arrival was timely not just because our “slumber party” had the two of us spending the night with Nancy. Just before she’d drifted off to dreamland, Jayna and I formulated a new plan. She and I will alternate spending the night so that Nancy will never be alone. I look forward to the rollaway even though, at this point, I am almost used to “my” chair.
I do want to put the day in perspective. It ended magnificently.
Unlike the morning and early afternoon, the day before yesterday when Nancy looked horrible and in the evening when she had improved but was drained from the ordeal, when Jayna arrived yesterday, her mom both felt and looked good. No doubt, Jayna was a major contributor. Her presence alone has raised Nancy’s spirits multiple octaves. My girls’ frequent laughter fills the room and is music to my ears. A dab of Passion Flower perfume to her mother’s neck, one of many gifts that appeared from Jayna’s suitcase, left the rest of the evening without the sterile hospital smell to which I’d nearly become accustomed.
I savored the evening, knowing that tomorrow Nancy restarts the ATRA pills that cause such dramatic side effects. I am told that any negative consequences are usually less intense the second time around, and hopefully that will be the case. However, these dramatic side effects clearly demonstrate that each step in our journey is a crapshoot.
We can’t get too high.
We can’t get too low.
Our race is a marathon, not a sprint.
Things can quickly turn bad.
And just as quickly get better.
Earlier I forgot to report some promising details. In just seven days, many of Nancy’s lab abnormalities are improving. Even her white blood count, previously made up largely of the “bad guy” cancer cells, has dropped from 89,000 to 13,000. We’d like the number to be about 8,000, with those cells being normal ones rather than leukemic white cells.
Today’s numbers demonstrate that the chemotherapy meds are definitely doing their job. If only we are able to maintain the balance between side effects and effectiveness.
Our hopes are high.
There were several other highlights today, too.
We’ve received many presents for Nancy’s room. Thanks. I still wish I could fill every nook and cranny with flowers, but “oh well.” I do want to acknowledge a very clever gift, sent not to us but instead to the hospital staff. One of our special friends, Debbi Fields (of Mrs. Fields Cookies), sent box after box of cookies, cakes, and other delicious snacks. Large containers of coffee and juice arrived as well. A long folding table was set up in the hall next to the nurse’s station to accommodate the sheer volume of treats. The accompanying card read, “Please take good care of my dear friend, Nancy.”
Staff and hospital visitors congregated nearby not only to eat the many treats but also to breathe in the strong, fresh aromas. The coffee was hot and the cookies still warm. Our already excellent care is now delivered with satisfied smiles reflecting full bellies.
Mmmm.
Thanks, Debbi; you are a dear, dear friend.
Jayna also has brought home various good luck charms from Peru that she has used to add pizzazz to the dull, metal IV pole standing guard over Nancy’s bed. A Peruvian native medicine doctor, called a “shaman,” blessed the most striking one, composed of two multicolored feathers attached to a crystal star that captures and reflects light like a rainbow.
When Nancy fell asleep near midnight, Jayna and I quietly decorated the rest of the room with hanging plastic flowers and balloons from the gift shop that now highlight your many gifts, cards, and pictures. They can be viewed in every direction from Nancy’s bed, and she stated it best before she fell asleep, “I am surrounded by so much love.”
Meanwhile, Jayna whispered to me, “We need to make this room ‘home,’ Dadder,” In the quiet moments, she composed a long list of the other things she wants to purchase. In hindsight, I guess I’ve been too focused on machines, lab results, and Nancy to notice how stark and dreary the hospital room appears—that is, before Jayna. As I look at Jayna sleeping on the rollaway bed, the tears always seem to well up.
Finally, I want to report about our first nonfamily visitor.
Around dinnertime, there was a knock on our door. When I opened it, Anne Evers (the wife of my partner Bob Evers) was standing just to the side so as not to be in Nancy’s view. “I know Nancy is not having visitors yet,” she said softly, “but I wondered if you can take a field trip with me.” (Anne works in the special hematology lab that follows blood diseases like AML.) Minutes later, we were in the hospital basement, winding through a maze of tunnels before arriving at Anne’s lab.
“Look,” she said as she adjusted the microscope for me. “Those big ones are Nancy’s leukemic cells.” I adjusted the focus on Anne’s microscope to clearly view the “bad guy” cells. Gazing at Nancy’s foe elicited a rush of passion different from the multitude of emotions that cycles daily through my being.
The strong new feeling?
Anger.
Anne, reading my face,
grabbed my hand: “It’s going to be all right, Winnie. Now you’ve seen the enemy.”
We both laughed a bit nervously. After another extended look, the anger dissipated as quickly as it had appeared. Without embarrassment, I declared out loud to the microscopic cells I had just viewed, “You’re toast!”
Crazy, huh? Anne was tickled and repeated my assessment.
One last detail I nearly forgot. After sitting at the foot of Nancy’s bed, watching and sending positive energy in her direction for many hours yesterday afternoon, I discovered something new about my bride. Nancy has elegant ankles. Sleek, strong lines. A few bruises from the decreased platelets and clotting factors, but her veins don’t stick out like they do on my ankles. The bumps on either side protrude gently, again in contrast to many I’ve examined over the years.
Nancy’s ankles are simply quite lovely. I held them for several hours today.
Even after twenty-seven years, I am learning new things about Nancy. What isn’t new is her dignity and grace in the face of adversity and her worry about bothering all of you. Though she isn’t completely sold on me writing you yet, she does send you her best and looks forward to future connections.
I will try to update you again in several days.
By then, I may even have a better sense of how we’re doing.
Summary: Today ended with Nancy feeling better and some positive lab results. We are ready for tomorrow.
My very best,
Winnie
A Week Is a Very Long Time
June 6, 5:22 a.m.
Dear Friends and Family,
Last night was a special anniversary. (No, not of our marriage. I look forward to that too, many months away.) Yesterday marked the end of the first full week in our new (hospital room) home. I had a good cry in the bathroom down the hall when I realized the significance.
One week ago yesterday, Nancy’s doctor told me she might not be with us for this long. I decided not to remind Nancy or Jayna and instead toasted the smiling yet very wet face in the mirror with a paper cup full of cold, fresh water. Funny, the tap water tasted at least as good as wine. But the best anniversary present came from the sleep spirits.
Night Reflections Page 5