“In fact, Jaret and I have been talking and he has something to tell you. I thought I’d bring him here this afternoon after his classes. He wants to see you and his mom.”
When I returned from lunch in the hospital cafeteria today, Nancy was nearly asleep and Jaret was sitting on the rollaway bed engrossed in his Gameboy. He looked totally connected to Linda, whose shoulder was serving as a pillow for his head. Linda nodded at me and gently nudged him, “J, your dad is here.”
As sometimes occurs when Jaret is excited, he skipped the perfunctory “Hellos” and “How are yous” and burst into conversation about what was on his mind.
“You know, Dad. Mom has always done everything for me since I was a baby.”
Jaret’s assessment is accurate. Nancy has helped him with everything from daily living activities to his studies. She has been his chauffeur since Jaret doesn’t have a driver’s license. Most importantly, she has been his emotional bedrock. She has continuously showered him with the unconditional love necessary to build his self-esteem. But today, he showed the fruits of her years as a Super Mom.
“It’s my turn, Dad. I need to learn how to take care of Mom. Tell me what to do.”
This evening I treated Linda and Jayna to a special dinner. Jaret didn’t join us as he decided to stay with his mother. It was our first meal in a long time not consumed at the hospital cafeteria. I couldn’t help but notice the look of satisfaction plainly revealed across Jaret’s face. It was the same look he exhibited when he announced his intention to assume a more active role with his mom.
As we walked out the door, I heard Jaret ask, “Can I get you some cold water, Mom?”
Summary: My sister-in-law Linda has arrived in Utah to assist our family. She made me very aware that our glass is more than half full and, in fact, contains lemonade.
Much love,
Winnie
As Close to Heaven as You Can Get
June 19, 11:50 p.m.
Dear Friends and Family,
When the elevator door opened this afternoon, I was shocked to see so many people. A thirtysomething male carrying his lunch tray from the basement cafeteria studied my face: “Don’t be shy. We’ll make room.”
I secured a spot in the left front corner of the “car” while I analyzed the scene and realized the answer. Surprisingly, this was the first time I had arrived at the hospital during lunch, the middle of posted “visiting hours.” In contrast, I usually arrive early in the morning or deep into the night. During the majority of my rides I am alone, able to make funny faces with impunity to the mirrors composing the elevator walls.
The packed elevator stopped at every single floor. Anxious fathers departed to the obstetrics floor. An athletic-appearing woman exited to the orthopedic wing. Middle-aged sons and daughters rushed to the internal medicine floor.
By the time the door closed on the seventh floor, a fortyish female was my only companion. Her tall, thin frame was slightly hunched, as if she was carrying the weight of the world. I couldn’t help but notice bloodshot, puffy eyes. Her facial expression resembled what I assume someone would look like while being stuck with needles underneath each of her fingernails—pained.
Noticing my gaze, she looked downward. Similar to her eyes, mine were also red and swollen. As is typical, the trip down the mountain from Park City to the hospital had included my daily cry. The woman nodded. I was an accepted member of the fraternity.
“You going to the eighth, too?” she asked softly. “Never thought I’d dread visiting a penthouse.”
Floor number eight, the penthouse of this hospital, is the “cancer floor.”
Nearest to heaven?
The woman and I disembarked in silence. And I did not make a funny face in the mirror today.
Since it was midday, I stopped in Room 801, now “home” to Megan, the twenty-two-year-old Park City girl with advanced ovarian cancer, whom I wrote about a few days ago. I hesitated a few moments and then carefully wiped my eyes before entering her room.
Summary: As I wax poetic, I sometimes find metaphors in my new daily life. I am plagued by unanswerable questions. The final stop on the elevator is the penthouse (eighth) floor where Nancy and my young friend, Megan, reside. It is closest to heaven.
So much love,
Winnie
Cherishing Each Day as It Comes
June 20, 11:07 p.m.
Dear Friends and Family,
Today was a great day.
Nancy feels good. She no longer has a fever, and is, for her, full of energy after receiving transfusions of red blood cells and platelets. For the first time in days, we ventured down the eighth-floor hall and were “outside” our room for nearly an hour before lunch. She devoured everything on her tray and within minutes, was snoring again in a sound, nonrestless slumber. For the entire day, Room 842 was filled with Nancy’s brilliance. My face aches from constant smiling.
Oh, and I’ve saved the best reason for last.
Midafternoon, Dr. Prystas, one of our cancer doctors, made an unexpected visit, sporting a smile as big as a half-moon. “Nancy, we’re seeing the early signs of bone marrow recovery in your blood tests. It won’t be long before you’re able to go home for a few weeks before the next round.”
A “vacation” in Woodland on the not-too-distant horizon?
OMG!
So Nancy and I are doing great. Which means it is probably a good time to catch up on everyone else.
In addition to the frequent questions of “How is Jaret doing?” and “Anything I can do to help Jaret?” A few of you have asked, “Is Jaret aware of the seriousness of Nancy’s illness?”
(Thank you, by the way, for always asking about Jaret.)
The answer is YES. He has even formed his own unique insight.
After the change in diagnosis nine days ago when I was melancholic, Jaret walked over to my chair and gave me a hug. As usual, his declaration was short and to the point: “I’m still optimistic, Dad. I know Mom could kick the bucket, but I have a good feeling.” Jaret had regrouped for the continued battle well before I had in a moment of self-indulgent self-absorption.
And what about Jayna?
Jayna has just redecorated our hospital “home” for the third time. Also, she and her mom have begun religiously watching reruns of a TV series that gives me pause: Six Feet Under. And it’s all I need to hear for me to go to the cafeteria or take a quick bike ride.
So at this point, I believe, the kids are fine. They are certainly a huge comfort, not only to Nancy but to me as well.
The final question I want to address tonight also originates from a large number of you.
“Nancy’s in remission?” is a question I’ve heard countless times. The emphasis is always on the word “remission” and the higher pitch assigned to that last word seems to me to convey an element of doubt. I suspect Nancy’s plight has led to the confusion.
For most of us, remission paints a pretty picture: Nancy feeling great, going home, being “normal”—even if it is recognized that a remission may not last forever.
Allow me to clarify.
CR, or complete remission in the world of leukemia, means the cancer cells have disappeared. Indeed, as many of you know, last week Nancy once again had a large bore needle jammed into her hipbone to perform the bone marrow test, the one that looks at the blood-forming tissues of the body. The results were exciting beyond belief. After only a few chemotherapy treatments and in less than two weeks, her bone marrow was “empty.” No leukemic cells were detected—CR. The doctors, nurses, lab technicians, respiratory technicians, as well as the clerks, janitors, and other hospital personnel who know Nancy, all congratulated us on achieving remission. They recognize big news. If she hadn’t achieved CR, the future would be darker than nighttime in a cavern without chambers.
However, chemotherapy is indiscriminate. It is not unusual to call the “chemo” drugs poisons. Though I nicknamed them “assassin” medicines, “poisons” may be more accurate.
When ch
emotherapy works like it has for Nancy, it is supposed to kill all the leukemic cells in her bone marrow. However, the few normal white cells left perish with the “bad guy” leukemic white cells. The parent cells that create new red blood cells, the cells that transport oxygen through our bloodstream, are also destroyed. The platelets, the particles in charge of bleeding prevention, are additionally demolished by the indiscriminate power of the chemotherapy drugs.
Consequently, even though Nancy is technically in remission, she is nearly as sick as the day she arrived—about three weeks ago today. She is anemic. She is at risk for serious bleeding into one of her vital organs. And even scarier, she has severely impaired immunity and therefore is susceptible to both common and unusual infections.
With her bone marrow wiped out, Nancy feels totally debilitated and extremely weak. She remains in isolation in a special room designated only for immunocompromised patients, awaiting her body’s normal blood-forming capacity to bounce back. She remains alive courtesy of red blood cell transfusions to help her anemia and platelet transfusions to prevent bleeding. What’s more, Nancy is taking a wide variety of antibiotics and antiviral drugs to prevent infection, the biggest worry.
Yes, Nancy is in remission. But she is still very sick.
I hope my explanation makes sense. If not, please ask me specific questions. I’ll try again.
And please know that there are good hours, afternoons, and, even days (like today) when Nancy is posttransfusions and feels better.
We cherish each day as it comes to us.
Summary: Great news! Nancy has achieved CR, or complete remission.
With love,
Winnie
Only in the South
June 21, 12:02 a.m.
Dear Friends and Family,
In the last update, I described Nancy’s lab results and how they made her feel physically. However, I realize I didn’t answer the most frequent and important question that continues to be asked now that we’ve been in the hospital over three weeks: “How are Nancy’s emotions holding up?”
Some emotions seem obvious, even though Nancy has not yet expressed them. Nancy has to be sad. Who wouldn’t be? And if I had to bet, she is scared. Is she angry? Or more than sad, depressed? I see occasional glimpses of these emotions, but I oftentimes wonder if I am projecting my own feelings.
Each day I leave the door open to connect on a deeper level. I ask, “What’s on your mind today, my love?” I inquire time and again, “What can I do?” Many of you have expressed helplessness in relation to Nancy’s situation. Powerlessness and vulnerability are emotions that have a constant presence in my emotional wheelhouse.
I hold Nancy’s hand. I tell my newest silly story in a feeble attempt to provoke laughter. And I catalogue into a daily summary all the thoughts and prayers that you are sending in her direction. But even between the closest of individuals, infinite distance exists. I can only hope to occasionally bridge the gap.
My best guess? Nancy is doing as well as can be expected. Having cancer is a horrible plight. Sitting next to it isn’t great either.
Perhaps a few stories will give the best answer (and insight) to your question.
On her morning rounds, Dr. Prystas (one of our cancer doctors), told Nancy, “You need to eat more if you can. Nutrition is important to our fight. I’ll write an order. They should give you whatever you want to eat whenever you want it.”
Dr. Prystas had barely shut the door when Nancy announced, “If you see the dietician, tackle her.”
The same plea went to the nurse, the intern, and our now familiar cleaning lady. Nancy is ready for the foods she likes, anything to combat the nausea and general lousiness of chemotherapy. It was also a full-hearted statement to all of us around her. Nancy seems eager to participate in her care. She is like a teenaged girl readying for a date, and her desire to get better is growing stronger.
In context, Nancy’s “tackle her” statement is even more amazing. Nancy is from the Deep South. Georgia, to be specific. As a “Yankee,” it took me years to understand how southerners communicate.
Southerners are rarely direct. My mother-in-law can spend a whole afternoon discussing dinner instead of just saying, “Let’s eat.”
Nancy is not as extreme. However, when she asks, “Do you think I should wear my navy coat,” I’m off the hook. She will be decked in navy; I just need to agree.
“Are you tired?” is southern for “I’m tired now. Can we go to bed?”
So instead of saying, “If you see the dietician, let me know,” Nancy’s “tackle the dietician” is completely out of character. Her response illustrates a strong will.
Thank goodness.
A second story.
“It hit me hard today, Winnie. I can’t believe I’ll have to do this chemotherapy thing again. Three more times. I feel like crap.”
What could I possibly say? It had been a bad day for Nancy. The phlebotomist who normally draws Nancy’s blood was off, and her replacement “missed” the first two times. She had to stand to have a chest X-ray even though she felt particularly weak. And she had to give three different urine specimens. By late morning, fever and chills were return visitors to Room 842. Nancy had no energy to walk. She even turned down her daily shower, too tired to make another trip to her bathroom.
“You know, Nancy, the day before yesterday, when Chuck and I took our mountain bike ride, we went on a brand new trail in Round Valley. It was really hard for me. But yesterday, we rode the same trail. And it wasn’t so bad. Actually, it was almost easy. Your treatments will be like that.”
Nancy grabbed my hand between both of hers. There were fewer wrinkles on her forehead than moments before. Her eyes spoke volumes and I couldn’t speak. I didn’t need to. For once, I chose the correct words. She smiled, closed her eyes, and fell asleep.
Your emails and cards have the same soothing effect.
I once again send our thanks.
For both of us.
A final story.
Jayna ordered five hats from the American Cancer Society catalog. They were delivered yesterday. When I arrived today, Nancy was wearing the pink one. She wore matching lipstick and was also sporting earrings given to Nancy by our dear friend Mona for their magic healing power. I even detected eyeliner, mascara, and a hint of blush. Today Nancy looked more beautiful than ever.
Many years ago, one of my medical school mentors taught me the importance of “accepting one’s disease.” When I gave Nancy a longer-than-usual kiss and told her how ravishing she was, she removed the hat. Her recently shaved, glistening bald head only added to the magnificence.
After saying “Wow” and showering her head with kisses and soft caresses, I asked, “Why now?”
Her twinkling eyes complimented the mischievous tone of her voice when she replied, “It was time.”
I suspect Nancy was talking about more than her clean-shaven head.
I expect as Nancy gains strength that you will hear from her.
Summary: As best I can tell; Nancy is doing as well emotionally as can be expected.
With much love from my bald and beautiful wife (and me),
Winnie
Playing the Waiting Game
June 23, 11:29 a.m.
Dear Friends and Family,
Three days ago, I wrote that our medical team thought that Nancy’s immune system was on the rebound.
They were wrong.
Nancy’s immune status remains unchanged, and the last two days have been less than great because the anticipated rise in the level of her white blood cells has not yet occurred. White blood cells are the cells that fight infections.
Nancy’s fevers have become more frequent and her temperature levels are higher. Our medical team has concluded that an unwanted enemy has more than likely gained a foothold. An infectious disease consultant has been recruited to help find the exact spot and type of germ, as well as to manage the many different anti-infectious agents Nancy is now receiving.
> I wish I could report better news. My heart is full of agony.
A few hours ago, I was sitting on the bed, holding Nancy’s delicate hand. Most of her bruises have faded, deep purple replaced by faint blue. Nancy made a soft, guttural sound indicating she was pleased that I was gently stroking each finger. Her skin was not so hot as it was an hour earlier and her face was calm, the hint of a smile on her lips. I thought she might be dreaming. I even found myself wondering if her spirit could be in a better place, far away from tubes and needles, bells and buzzers, pills and tests.
Unexpectedly, Nancy’s entire body twitched and I nearly fell off the bed’s edge as I jumped backward by reflex. She opened her eyes and I was mesmerized by the blue sparkle, as bright as the day we met more than two and a half decades ago. Once Nancy closed her eyes again, my mind drifted back to that fateful August day during the summer of 1978 when Nancy walked into the medical clinic at Mammoth Hot Springs in Yellowstone National Park.
Though it was a sun-filled day outside, “lightning” struck me in that exam room so many years ago. Nancy’s soft voice and ready smile instantly made me feel like we were old friends. I almost forgot everything as we exchanged initial pleasantries. From that very first second, I was drawn into Nancy’s gaze. Her eyes were the color of the summer sky on a cloudless day. They exuded the warmth of that season. Nancy’s smile was full, kind, and part of an expression that was both deep and inviting. I remember reacting to my feelings with nervousness, and I’m sure I acted like an intern interviewing his first patient. My heart raced, my hands were clammy, and I stuttered more than once as if my mouth wasn’t connected to my brain.
Once the visit was complete, I walked Nancy into the waiting room, trying to figure out what I could do to prevent her from driving off in the late afternoon sunset and out of my life.
“What are you doing tonight?” I sheepishly inquired. “Would you be interested in experiencing an authentic cowboy town? Gardiner, Montana, is just a bit north of us.” Such brashness was completely out of character in my normal interactions and, looking back, even further “on the edge” given that I had met Nancy as a patient.
Night Reflections Page 8