I have finally returned to my one-word, familiar reply to the omnipresent question of “How are you?”
“SUPER!”
Why?
It happened only yesterday. Nancy and I had a restful night, with more sleep than interruptions. As always, I awoke for the sunrise, which was more brilliant than usual. The muted yellows and blending oranges bursting through the window were like an impressionist painting and I considered for a moment whether or not to awaken Nancy.
Nancy had been without a fever for nearly fifteen hours at that point, a blessing that allows her to feel relatively good and lets me worry relatively less. No elevated temperature was a sharp contrast to the day before when she had spiked a temperature of 105 degrees and required more oxygen. The medical team concluded Nancy had pneumonia, and with no innate immunity, the battle seemed stacked against us.
But yesterday morning, even better than the colorful greeting from the rising sun, favorable lab news arrived. Nancy’s immune system is making neutrophils. Red cells and platelets, too. Her sleeping bone marrow has awakened at last, and good things are bound to follow.
I attribute this favorable event to your prayers and positive energy.
My deepest heartfelt thanks to each and every one of you.
Summary: The last forty-eight hours have seen a dramatic turnaround in Nancy’s condition; her bone marrow is once again generating the specific white blood cells called neutrophils that provide natural immunity and complement the many antibiotics she is taking to fight the pneumonia she has contracted. I’ve waited anxiously and apprehensively for twenty-eight days to report this spectacular development. If Nancy continues to progress without complications, she will be able to come home in about a week.
SUPER love,
Winnie
Laughter Is the Best Medicine
June 27, 11:34 a.m.
Dear Friends and Family,
Today, Nancy woke up looking bright, more alert, and ready to do something for which I’ve waited three weeks: have fun. She barely mumbled, “Good morning,” before loudly hitting me with the zinger, “Your hair is looking a little ragged, Winnie.” Nancy was being kind. (What little hair I still have was more than ragged.)
Disheveled?
Too long?
(Probably both.)
Jayna, who had just arrived to join us, quickly chimed in, “Yeah, Dad, you are having a bad hair day.”
I walked over and stood in front of the mirror above the sink on the far wall. I saw a much-too-familiar sight. My hair extended north and south, east and west. All at once.
“All right, Jayna. You can say what you want, but Mom has no room to talk . . . now that she has less hair than me.”
Laughter echoed throughout the room, the wonderful sound emanating from both of my girls. Such a sweet sound always warms my heart. The merriment continued for nearly an hour as we chided each other about our dress (or in Nancy’s case, the lack of it), our various mannerisms, and even stupid things we’d said years ago—like when I confused Brad Pitt with another actor who had dark hair. Each of our stomachs ached by the time Nancy’s chuckling stopped and her eyes closed.
Today, for some unexplained reason, Nancy seems more beautiful than ever before. Her entire bald head seemed shiny this morning—like Charles Barkley.
Last night, I discovered a distinctive mole atop the front right side of Nancy’s all too shiny head. Even if her face was hidden, I can now distinguish Nancy’s head in a line of a hundred bald heads.
I kissed the newly discovered mole last night and plan to do it several times a day.
And I will cherish each moment.
In fact, I kissed it softly just minutes ago, so as not to awaken Nancy.
Summary: We are learning to have fun again.
Love and laughter to each of you,
Winnie
No Worries
June 27, 10:39 p.m.
Dear Friends and Family,
As Nancy’s strength and activity level have increased, I have a new job: THE WORRY BUSTER.
With important healing to do, there is no issue too small for my attention.
“I forgot to send a present to Enoc, Winnie. He graduated nursing school the week I came to the hospital.”
(My beloved deceased grandmother had taught me “a check fits everybody.” So a check was in the US Mail within the hour.)
“Winnie, do you remember if I ever talked with Miriam?”
(A much tougher assignment. Nancy hadn’t called when a dear friend of ours, Wayne, committed suicide just before Nancy got sick—almost a month ago. Accordingly, I picked up the phone today and called his wife, Miriam, to offer condolences and to tell her about Nancy.)
“Who’s feeding the cat, Winnie?”
You guessed it—THE WORRY BUSTER!
It is truly exciting that Nancy is now feeling well enough to focus on other concerns besides making it through the next hour.
Summary: I have a new title—The Worry Buster!
Love and no worries,
Winnie
Anger Isn’t a Bad Thing
June 28, 9:46 p.m.
Dear Friends and Family,
After a good day at the office, where staff and patients continue to buoy my spirits, I just arrived at the hospital for my favorite job—Nancy’s “nursing assistant’s assistant.” (And pill holder, ice fetcher, mail reader, bathroom attendant, spirit booster, etc.)
Once again, there are two heads peaking from beneath the new pale-blue covers on Nancy’s bed. Both my girls are fast asleep, not even twitching when I burst into the room. I delicately kiss one bald head and one with flowing dirty-blonde tresses before quietly sinking into my bedside chair.
Jayna woke up a minute ago, rubbed her eyes, and smiled at my presence.
“Nice ‘doo, Dad,” she whispered.
I giggle at her surprise. After all, I’m The Worry Buster! My hair is freshly cut and, at least for one day, is neat and trim. My beard is shorter, too. Anything for my lady.
Minutes later now, Nancy sits up and squints, trying to get me in focus.
“Hi, Winnie. Your hair sure looks good. I like it. You let Stephanie really cut it this time. When did you get here?”
In the last couple of days, as one by one her meds have been discontinued, Nancy has been able to watch TV. But the chemotherapy has affected Nancy’s eyesight more than I thought. (My hair hasn’t looked good for a decade or more.)
My arrival marks the changing of the “guard.”
Jayna has now left to return to her Salt Lake City apartment. A thin slice of normalcy for her? (I can only hope as I ponder how to connect her with friends.)
How do I get her to a movie?
A bar?
Anyplace besides Room 842!
Am I up to making a few calls?
Meanwhile, it is my turn and I am excited for the time alone with my bride.
Our nurse, Denae, has given Nancy her night medicines. Our “other” certified nursing assistant, George, has taken vital signs and won’t return for four more hours. The IV bags are full and running. It should be a peaceful time given Nancy’s improvement. It’s the time of night that Nancy and I typically discuss the future—or potential lack thereof.
Most often, Nancy only speaks about Jaret and Jayna. I speak of Nancy. I cherish this indescribably close time when Nancy is feeling almost normal. For a few precious hours, there will only be the darkness outside, the quiet of our room, and Nancy and me.
Our nurse interrupted our discussion about Jayna; there was one last pill to swallow. But then the magic vanished and, in fact, I got scolded.
“Who said you could offer that candy to the nurses, Winnie? Charlie gave the box of candy to me, not you.”
I examine Nancy’s beautiful face, incredulous. She’s not kidding. Her eyes narrowed and her lower lip extended slightly more than its upper partner. My tears are tempered by a strange realization. Nancy must love me. As far as I know, I’m the only person who exp
eriences her anger. And she needs to have anger.
Summary: We are adjusting to hospital life as best we can.
All our love,
Winnie
A Day Full of Promise
July 2, 10:07 a.m.
Dear Friends and Family,
Today, I rode nonstop to the top of the trail.
Did you know that the multicolored roofs of Park City, when viewed from atop the Lost Prospector mountain bike trail, stretch in all directions? Several rows of gingerbread-like houses, if you’ve never taken this ride, actually cling to a steep slope below the ridge on the other side of the valley. Almost every day these houses emerge like ghosts from the morning shadows as the rising sun climbs higher in the sky.
Finally.
Generally, I take comfort from the cloudless blue sky, the surrounding scrub oak trees, the late summer yellow sunflowers, and mostly, the solitude. Such exhilarating surroundings always help me gear up for the day’s trials. (When I ride my bike, it’s my thinking time.)
And new trials are here.
Last night, Nancy developed a new complication.
As usual, she provided the appropriate words: “I just don’t know what to expect, Winnie. Every day is different. And usually, it’s awful.” Though she poked me in the stomach as she said this in attempt to make me laugh, I know there is truth in her pronouncement.
I am now fighting the same sentiment.
Despite all my attempts to stay positive for the loved ones around me, once again I am reminded of the obvious.
Life with cancer sucks.
Nancy experienced sharp pain in her left arm yesterday afternoon and evening. Her wrist swelled and her fingers grew tingly. She was forced to remove her simple, gold wedding band when the swelling extended to her fingers. It wasn’t a surprise to me when our medical team discovered a blood clot in her right arm, a not uncommon side effect of the special IV line so necessary for her treatment. The team quickly removed the central IV line and Nancy was immediately started on blood thinners.
Medically, this is a tough setback. But psychologically, the setback is even worse. Nancy’s highly anticipated hospital departure has been postponed.
Just minutes ago, I received the call.
Today, will mark the end of Chapter 1 in Adventures in Cancer Land. Despite the blood clot discovered yesterday, Nancy will return to Woodland today!
Since Nancy will be coming to Woodland on oxygen, she won’t be venturing to our upstairs family room, the place we normally hang out. Our downstairs living room, consciously devoid of furniture since we moved in twenty-one years ago because of its’ natural beauty (a large hand-placed stone fireplace; a twenty-four-foot wood ceiling; and floor-to-ceiling windows with a pristine view of the river, trees, and mountains), now includes a long couch for napping, a coffee table big enough to embrace two full meals, and several comfy chairs including a recliner. The room’s floor-to-ceiling windows face south, allowing brilliant sunshine to fill the room from early morning to late afternoon. (We hope the contrast with our one, tiny hospital window and artificially lit hospital room will warm Nancy’s heart and strengthen her frail body.)
Though our newly furnished living room should be ideal, we anticipate that Nancy will spend most of her time in our bedroom. After all, Nancy’s mission at home is to rest and regain her strength for the next round of chemo. She will be greeted by a brand new, ultracomfortable king-size foam bed adorned with soft sheets, down pillows, and a new down comforter featuring a deep-red paisley design.
Our ground floor bedroom, like the newly appointed living room, opens to a deck whose entire far edge is flower boxes that contain multicolored pansies, daisies, and other varieties of wild flowers. The deck overlooks the Provo River as it winds through the property, the far side lined with cottonwood trees, aspen trees, and scrub oak.
Bells and buzzers will now be replaced by the melodic sounds of birds and bugs. The smells of summer in the country will replace the antiseptic smell of the hospital.
Home.
A great place for healing.
Summary: Nancy leaves Room 842 today after thirty-five days. We are returning home!
Love,
Winnie
A Day of Less Promise
July 2, 2:10 p.m.
Dear Friends and Family,
To say I’m a bit excited about Nancy’s return home would be like saying I am a bit hungry after eating no food for an entire month.
My mind is overflowing with details. I’ve picked up about sixty feet of remote oxygen tubing so Nancy can walk through the house without pulling a canister of oxygen.
I’ve stockpiled dressing supplies, sterile gloves, needles, and the like.
I’ve checked and rechecked Nancy’s medicines, ensuring we have enough pills for her seventeen days at home.
There is still food to buy, cleaning to do, and calls to make. My list is long but not begrudged. I want this to be a singularly special time.
While relating so many of our day-to-day stories, I’ve omitted some medical details.
So it’s time to catch up.
Nancy’s blood status has improved dramatically. Her hematocrit, a test that measures the number of oxygen-carrying red blood cells, was so low she required transfusions every few days following the chemotherapy. That particular test is now normal.
Platelets, the particles that stop bleeding, were also low for most of this hospitalization. Nancy received platelet transfusions even more frequently than the red blood cells. Over the last week, her platelets have rocketed into the normal range. She’s allowed to blow her nose again. (The simple pleasures of life.)
Most importantly, Nancy’s infection-fighting white blood cells have finally rebounded. Her total white cell count is now at the same level as yours and mine. She no longer needs to wear a mask when she walks the hall on the eighth floor and will soon leave her artificially sterile world. (I’m probably allowed to kiss her on the lips, though it will feel strange. Which one of us will be more scared?)
Just nine days ago, Nancy had a fever to 105 degrees and rapidly developing pneumonia. Though nothing grew on the almost daily cultures, the infectious disease specialists suspected a fungus named Aspergillum. But the doctors were uncertain.
Uncertainty.
Uncertainty is part of our daily lives. We try to banish it to a remote corner of our brains. We try to exile it from our souls. Still it is always lurking.
At present, there are unwanted spots on Nancy’s chest X-ray, reflecting a remaining, uncertain dark force. We will complete the battle at home; Nancy will leave the hospital in remission from the leukemia, but still on oxygen and an antifungal medicine.
On an early morning bike ride a few days ago, I ran into a friend and female patient atop a mountain overlooking Park City. I was exhilarated to see the sun quickly ascending up over the horizon and she inhaled deeply and said, “Today is a new day, full of promise,” before waving and running off.
Her words echo my feelings today.
Nancy is coming home to rest and prepare for round two. But there is more to think about than the next round. Two days ago, we sat down with one of our oncologists, Dr. Elizabeth Prystas. “The High Priestess,” as Nancy has nicknamed her since the pronunciation is the same, took her customary seat next to Nancy’s bed. Though slight in build, Dr. Prystas has an unusually commanding presence.
“All of your numbers look good, Nancy. The pulmonary people tell me your lungs are improving rapidly. The infectious disease folks have you down to taking only one drug. Let’s plan on going home the day after tomorrow.”
“What happens next?” Nancy’s voice was steady, and her mind seemed clear. (A few days ago, she would have fallen asleep in the middle of a question.)
“Let’s see, we’ll plan on you coming back for the next phase of treatment in two weeks. No, since you’ll be leaving on a Friday, we’ll start again on a Monday. That’ll make it seventeen days.
“When you come back, we�
��ll start the treatment phase we call consolidation. Though you’re in remission now, experience tells us that if we don’t give you more chemotherapy, you will relapse. So we will plan on four rounds of consolidation.”
I can read Nancy’s face pretty well after more than a quarter century. There was disappointment in her eyes. Both of us thought there were only three more hospital stays. (Didn’t “Captain” Morton, the High Priestess’s partner tell us that?) Nancy coughed and turned away. When she turned back, her face was calm and composed.
“And what about a bone marrow transplant? Do we talk about that now?”
“Good question, Nancy. We’ll want you and Winnie to meet with the bone marrow team during your two-week holiday. Probably near the end of that time period, after you’ve gained strength and perspective. A transplant procedure is very difficult. Our decision will be when to do it. Though you’ve shown great resilience and toughness, we have to decide if we should consider a transplant early, after the first consolidation treatment. Or if we should save it as a rescue procedure—if the other treatments don’t work.”
“What would you do, Dr. Prystas?”
I was dumbfounded by this question. Until today, Nancy had not wanted information beyond the near horizon. With some real lows recently, I had worried about Nancy’s resolve.
But now?
Nancy was stepping up to the plate and swinging for the big picture.
The High Priestess has short, black hair that surrounds a soft, kind face. Her dark-blue eyes overflow with compassion. She speaks in a voice that could say, “Your son is going to Iraq,” and you’d think it was all right. But I almost fell off my chair when Dr. Prystas responded, “Your leukemia seems to be a good one, treatmentwise. Personally, I would do the four consolidation courses and hope you are in the 15–20% that get cured.”
My face flushed with blood—15–20%?
How can the survival rates keep changing?
At one time, the “Captain” told us “almost 50%.”
Night Reflections Page 10