That’s a Lot of Stuff
September 1, 11:07 p.m.
Dear Friends and Family,
I find it hard to believe it has been almost two weeks since I last wrote you. Either I am getting used to the roller coaster ride or I have been overwhelmed by the responsibilities of my day job in Park City—plus my attempt to keep our family on an even keel.
It is not easy to live in a hospital room, watching Nancy endure her next round of chemotherapy.
Am I numb or exhausted? Or both?
Many days I don’t know. Anyway, Nancy is laboring along, already one week into this “visit” to our hospital home.
So how did this round begin?
“Now that’s a lot of stuff,” I heard from a voice to my left.
I turned to view the round face of a plump, fortyish woman. Her head was tilted in my direction to get a maximum look at the many items in the extra-large blue storage bin riding on the arms of the wheelchair that I had borrowed from the check-in desk at the hospital. Six clumps of plastic flowers were proudly sticking their yellow, red, and blue tops from the second of our two bins that was being transported to Nancy’s new eighth-floor room. Numerous books, pictures, clothing, stuffed animals, and other various sentimental items were directly visible to this all-too-curious lady’s view. (I bought the bins at Staples at the end of our first hospitalization, and the containers have allowed us to move in and out of the hospital with ease and efficiency, albeit not with much privacy.)
“My wife will be here a long time. Probably a month,” I responded, trying to talk to her and not to the other folks in the elevator who now were looking at the bin directly rather than glancing at it fleetingly so as not to stare.
“Oh . . . ,” the lady replied, shuffling her feet nervously. “I’m very sorry.” The lady literally ran off the elevator when we reached the fourth floor, not meeting my eyes or even saying good-bye. The fourth floor is the newborn floor; she was probably a new grandmother, I concluded. The patient she would visit probably would stay in the hospital two days at the maximum.
Feeling somewhat self-conscious, I looked at the ceiling mirror as I transported “a lot of stuff” the final four floors to the “penthouse.” The other visitors on the elevator marched off at intermediate floors, looking at their feet just like the “curious” lady. By the seventh floor, I was finally alone.
Why do I feel uncomfortable on a hospital elevator?
A month is a long time to be quarantined in a room that is drab and antiseptic by design. Jayna and I have made every effort to fill Nancy’s room with fun things, to add a personal touch to offset and soften the absence of personal decor. We want Nancy to be surrounded in all directions with reminders from friends and family. One card hanging on a wall might bring to mind ten emails or letters I’ve read to her.
(Each of you has touched Nancy’s heart in countless ways; I want your love nearby during the hard times.)
Once off the elevator, I spent the next hour framing the already existing pictures with our bendable plastic flowers, filling the bulletin board with thumb-tacked mementos and cards, and placing Nancy’s growing “herd” of stuffed animals in every corner and on every shelf.
Nancy assumes the director role on “move-in” day and isn’t hesitant to point out, “No, I like it better over there. Like last time.” Though Nancy feigns objection at so much fuss, I suspect deep down inside she likes her room’s renovation.
By the time I empty both bins, the all-white room had been transformed into a menagerie of color. Our plastic flowers offer no smell, but Nancy speculates proudly that our room has as much foliage as exists in the entire hospital. And certainly, it has the most cards and pictures. As a last gesture, Jayna opens a perfume bottle and dabs it all around the room to block out the smell of bleach and soap. I like the fragrant smell almost as much as its name: Eternity.
Each and every one of the staff on our first day back made a comment: “You’ve transformed this room into a garden paradise again. And look at these new pictures. Are they from your party?” Jane, one of Nancy’s nurses during her past two hospitalizations, turned to Jayna and shared an observation that touched us greatly: “Everyone on our staff loves coming to your room. You make it home.”
For the first time in a while, I can remember that things do matter. Earlier I was frantic when I thought I had misplaced the beagle stuffed animal given to Jaret by his great Uncle Hank. “Hushpuppy” is one of Nancy’s favorites. She expects him to be sitting on our tiny windowsill in Room 842, like always.
Funny what really matters on day one of hospitalizations.
Summary: We’re back on the penthouse floor. Room 842. And we brought a lot of stuff with us to make it our home—for now.
With love from Hushpuppy, our many other stuffed companions, and Nancy,
Winnie
New Stories from Cancerland
September 9, 3:42 a.m.
Dear Friends and Family,
A story from yesterday.
“All right Winnie, visualization time.” Our nurse for the day, Wendy, has just hung Nancy’s chemotherapy medicine. Nancy closes her eyes, but I’m not ready and I can only look at her. Some place deep inside her body, she is fighting a battle.
Is it the “Pac-Men” eating the “bad” guys?
Soldiers in white against soldiers in red or black?
A gold potion or a magical wand?
Nancy is in her zone, imagining her Vitamin C (our nickname for the AraC, chemotherapy drug) searching out any residual leukemia cells. But on the outside, there is no battle. Nancy looks beautiful. Relaxed. Peaceful. My bride’s fuzzy dome sparkles in the early morning sunlight that streams through our tiny mountain-facing window. I want to rub that head, just like I do so many times each day.
Before I decide if such a foolish action might break her concentration, there is a telltale sound. A snort. This now all-too-familiar noise is the prelude to Nancy snoring, which occurs seconds later. Her battle is over. I’m certain she’s won; she’s now fast asleep.
The medicine continues to run, barely halfway finished. The powerful chemotherapy drug, still flowing into the new central IV line just below Nancy’s right clavicle, needs my help. I close my eyes. I pick up the baton from Nancy. It is my turn for adventures (and battles) in Cancerland.
I think I’ll imagine gladiators this time.
One story from today.
Schedules. Though I attempt to live in the present, I sometimes am forced to plan a few days in advance. For example, I knew that last Tuesday and Wednesday, I wasn’t going to have to work in Park City. Therefore, for those entire two days and nights, Nancy would find me by her side or just south of her feet.
Thursday, however, was a different story. My day job at the clinic would require my attendance. I was scheduled for the late 12:30–9:00 p.m. shift as well as being on call. By the time I realized my problem, it was too late to trade shifts. Jayna, unfortunately, was asleep at Woodland after having spent more than twenty-four hours traveling back from Peru, where she had attended the wedding of her boyfriend’s brother. Though her travel was free (as a result of Nancy’s past employment), several of the planes from Dallas to Salt Lake City had been full, and Jayna had spent the previous night stretched out on an airport bench, attempting to sleep. For that reason, she was “out for the count” Tuesday and Wednesday. Thursday wasn’t any better either. It was her first day of school at the University of Utah, and she would have to be gone at least part of the day—if not all of it. To make matters even worse, Linda was back in Georgia teaching ESL.
After only a brief pause, I somewhat hesitantly picked up the phone: “Jaret, what would you think of spending the day with Mom on Thursday? You’ll just have to be with her until Jayna finishes school and gets her books.”
Jaret had stayed alone with his mom once before without a problem. Still I was hesitant about putting him in a position where he might be uncomfortable. He still hated blood. He didn’t like me to ta
lk about diseases with Jayna. In reality, he pretty much avoided everything medical—especially hospitals. Growing up, I all-too-well remember him saying, “Hospitals give me the creeps, Dad. I don’t know how you do it.”
Without a second’s hesitation, Jaret answered, “Dad, it’s my turn. And I can sleep over, too. I want to help Mom. And you.”
And so it was that Jaret had his first “sleepover” with Nancy.
When I finally made it home around midnight and climbed between the sheets exhausted, I tossed and turned. I worried about Jaret not sleeping. I worried if his presence was a strain for Nancy, who needs every bit of sleep she can get. Instead, Jaret answered Nancy’s phone when I nervously called the next morning for a progress report.
“It wasn’t a big a deal, Dad. I slept really well. And Mom did, too. Didn’t you, Mom?” Pride radiated from my son like the mouthwatering smell emanating from a kitchen on Thanksgiving. And I truly and thankfully appreciated it just as much.
Summary: Jaret continues to grow and mature. Not everything about Nancy having leukemia has been bad. Some things have been good.
Much love,
Winnie
Smiles All Around
September 9, 11:05 p.m.
Dear Friends and Family,
During my silent period, I forgot to relate a most important fact.
So another story from our first day back in the hospital.
Each day, Dr. Morton makes his rounds during one of two time periods. Round one begins at 9 a.m. before his office hours. And round two, around 5:30 p.m. after his office workday ends. Consequently, this morning when the clock read twenty after nine, it was looking like I wouldn’t see him until the end of the day. (I didn’t mean to be impatient, but Nancy’s bone marrow report was most likely sitting atop his office desk.)
On the day of our return for hospitalization three, Nancy had once again quietly endured the big, long needle being thrust deeply into her right hip. The grinding sound, though familiar, was no less chilling even though Nancy didn’t wince or squeeze my hand any harder than the last time. But the wait seemed harder this time around, and we both wanted to know the results.
Is she still in remission?
Would Dr. Morton at least call if it were bad news?
Shouldn’t he want to call if it was good news?
I found myself repeatedly looking at the clock. When the big hand was on the four and the little one nearest the nine, I made my decision. I wouldn’t wait until after his workday. I wanted to know now.
I decided to sneak out into the hall so that Nancy wouldn’t know I was worried. And if the results weren’t favorable, then I could figure out how to deliver disappointing news. My concern was caused by the fact that the day before the test, Nancy had seemed tired. And two days before that she bled slightly while flossing her teeth. (My teeth bleed too, but I don’t have leukemia.) But before I could put my plan into action, there was a familiar knock on our door at twenty-two minutes after nine.
“Hi, Nancy, how is my most boring patient today.”
Nancy awakened quickly. “I’m fine, Dr. Morton. How are you?” Nancy and the “Captain” connected with big, warm grins.
I didn’t smile. I wanted the news first.
“Well, first off I want to tell you about your bone marrow. There was no leukemia. That’s exactly what I hoped for—and expected. But it’s always nice to get that report. What do you think of that, Winnie?”
I didn’t speak. I was certain he could read my beaming face.
I’m still smiling. After two weeks in the hospital, our second home, things are so far, so good.
Summary: We are amid hospitalization three and have fantastic news. The bone marrow test Nancy endured for this round confirms that she is still in remission.
Thanks for your thoughts and prayers and for continuing to remember us,
Winnie
The Perfect Vacation
September 12, 10:48 p.m.
Dear Friends and Family,
Numerous times during this journey I have used the word “vacation.”
To date, “vacation” has meant the time Nancy and I spend in between her treatments and hospitalizations at our beloved home in the mountains. “Vacation” has seemed an apt term, as any time away from toxic medicines that make Nancy sick and threaten her life is certainly an escape, retreat, or holiday in the world of leukemia.
On the other hand, the last seven days have been a “traditional” vacation for me because I was “off” from my day job in Park City. Today is the last day of that vacation. Even so, I awoke feeling warm and fuzzy.
What was the first thing I saw this morning?
In the bed beside my rollaway, I mostly observed an overstuffed royal-blue quilt, the treasured present from Nancy’s dear college friend from Minnesota, Patricia McCleese. As happens with Nancy and quilts, the comforter engulfed Nancy’s body. The only part of Nancy I can monitor is a sweet little head surrounded by a halo of pillows. She is still asleep, looking thoroughly serene. I tiptoe closer to capture the moment. Nancy’s hair is once again growing, some of it is over an inch in length and no longer sticking straight up. I still can’t discern the dominant color, but it makes me chuckle to myself all the same just to see the stubble burst forth in every possible direction like Nancy had placed her finger in an electric socket.
“What?” Nancy says with a start. I gaze into her sleepy eyes but get lost in their sky-blue radiance. I find myself wondering, did Patricia know how well the quilt would highlight her eyes?
“Good morning, darlin’,” I say, as has become my best “southern” custom.
Nancy yawns, then shuts her eyes. She is back in dreamland.
Will she remember?
The tired ache deep in my bones has disappeared because my only duties have been those having to do with the hospital. I have not worked for nearly a week. I have not had to race between the clinic in Park City and the hospital in Salt Lake City, changing roles and sometimes clothes in the Subaru. I feel both rested and invigorated.
Watching Nancy breathe normally, I am thankful. She displays no effort. In this same room during her first hospitalization, she struggled to breathe. The image is hard to erase. But so are the tricks that, at times, several of Nancy’s drugs play with her mind.
A vacation in the hospital “penthouse”?
Where else but the “penthouse” is every meal brought to your room?
Where else is the service completely personalized?
Everyone in this hospital knows you and you are treated as if you are staying in a fine hotel. Everyone really and truly cares about you and your family. On a daily basis, you have long conversations with staff. You get to know about them, too. Jane has three kids, with one young adult in college. Will likes to mountain bike.
Do I ask too many questions?
Time has seemed suspended this week—almost nonexistent. Not once were Nancy and I in a rush. We took leisurely walks twice a day, we talked on the phone to friends and family, we read your emails, notes, letters, and parts of books, and we watched videos and the ever-present TV game shows. The days were wonderfully lazy. I was always there during Nancy’s best times of the day. I was always there during her worst times of the day, too.
Nancy, with me by her side to monitor how she looked and felt, decided this week that it was all right for friends to stop by for a brief hello. There was more merriment in our room than in all the weeks that have recently passed. (Friends never visited us in Hawaii or Europe or South America during our other vacations.)
There was no dealing with airports or taxis or crowds. (How wonderful is that?) A vacation without travel hassles. (And how could I forget?) It’s fall now. Our view of the mountains is spectacular. Even through our tiny little window.
In all honesty, I did miss having a beach, or at least a pool and hot tub. And we didn’t get to walk through a jungle or browse a museum. Our strolls were limited to a circle around the eighth floor of the hospital;
Nancy strode the halls decked out in her robe and her pink Boston Red Sox cap, wearing a protective mask. (Quite the fashion icon. Thanks, John. She loves the good luck hat.) And we all-too-well now know every picture, sign, and crack in the wall along our well-traveled path.
True, our “penthouse” room at LDS Hospital is not as nice as the least expensive room at a Marriott. But in our “home,” we are able to do our own decorating. We are completely surrounded by things of our choosing. In my mind, the decor beats the Bellagio hands down.
Nancy has room service for every meal, while my food comes mostly from the twenty-four-hour cafeteria. It is not gourmet, but it is both cheap and plentiful. Nancy’s room and board is more expensive than any first-rate room in the world. But I stay free, even though I am not a child. And it’s likely insurance will pay for most of this “vacation.” That’s never happened before at a Hilton.
A different vacation for me?
Yes. Though I sometimes feel sad, lost, and even despondent. I have done more thinking about life’s mysteries than on any previous ten vacations. Plus, when I add everything up, I have had quality time (and lots of it) with the love of my life.
And by the way, if you don’t know it by now, Nancy could turn a jail cell into a holiday.
Summary: I had a week’s vacation from my “day job” and spent it entirely in the “penthouse” with Nancy. She feels good. Our vacation was perfect.
Best,
Winnie
Two Is Better than One
September 13, 5:06 a.m.
Dear Friends and Family,
Dr. Peterson paid an unexpected visit to our LDS Hospital “home” last week while Nancy was in the midst of her latest round of chemotherapy: “I’ve talked to six respected oncologists around the country, none of them transplant surgeons. They’re evenly split 50/50 on which way to go.”
(I am sure that I don’t have to remind you that our first visit with Dr. Peterson had been a disaster. After he informed us that Nancy’s chance of survival without a bone marrow transplant was 10–15%, it had been all but impossible for me to listen to another word. I had been too stunned to ask a single question. Now after researching transplants and talking to lots of outside sources, I was prepared.)
Night Reflections Page 15