The next ten seconds last an hour. Blood rushes to my face and moisture slickens my hands. My head starts to pound and my legs struggle to keep me upright. I begin to get angry. It can’t be. It can’t be.
How could Nancy’s leukemia return?
A single tear is balanced on Nancy’s cheek as I race to Nancy’s bed and grab her exposed hand, but there is no horror on her face, unlike mine. Nancy is mouthing a word. I bring my ear closer in an effort to enable her to whisper a single word: “Alain.”
After I delicately place a quick kiss on Nancy’s beautiful bald head, I move to the other side of the room. Alain is Jayna’s Peruvian boyfriend. I attempt to comfort her by stroking her thick hair and by holding Jayna’s trembling body close to me. In a matter of moments, I can feel dampness from her tears on my shirt.
“His visa was denied, Dad. What are we going to do?”
As you may remember from earlier letters, Jayna was in Peru when Nancy was diagnosed with leukemia. Jayna had just completed her junior year abroad from Vassar, the college in New York that also sponsored her “year abroad” program. When I called, Jayna responded immediately by returning home the very next day. She’s been at her mother’s side ever since.
Most of you know that Deer Valley Resort is one of the three local ski areas on the east side of the Wasatch Mountains. My very good friends at the resort had kindly arranged a winter job for Alain. So today, with a work offer in hand, he was getting ready to leave his family for six months in Utah. We later discovered he had traveled 350 miles by bus from his home in Cusco, Peru, to the American consulate in Lima, but the US bureaucrat in charge of his final paperwork wouldn’t authorize his entry into the country.
I must admit, even though Jayna was hurting as I held her and stroked her hair, I was momentarily buoyed and completely thrilled. Then, just as quick, I became a basket case of conflicting emotions. Initially, all I could think of were the two words that every cancer patient most fears—“It’s back.”
At the outset, all I saw in Jayna’s puckered brow and disconsolate sobbing was a brush with disaster.
Why?
How could I feel relief that Alain is sitting in Lima?
In the end, I realized today that Nancy is my everything, but so are Jayna, Jaret, and everyone else in our extended family. Ultimately, we formulated an alternate plan. I called my friends at Deer Valley Resort and they jumped into action. They made several phone calls to their Peruvian contacts and Alain is now scheduled for a second interview and chance—which is all any of us can ask.
At long last, Nancy is lying in bed with a new immune system and no sign of recurrence. Three weeks have passed since her transplant. She’s had no serious infections. And most importantly, the two words everyone in our family fears, “It’s back,” have not been spoken.
I can make you this promise: we’ll be ready for whatever next week brings.
Summary: When Jayna’s Peruvian boyfriend was denied passage to this country today, I was reminded that Nancy’s disease also has had major effects on the other members of our family. I will redouble my efforts to support Jayna and Jaret.
My very best,
Winnie
The Engraftment Blues
November 22, 9:13 p.m.
Dear Friends and Family,
Each and every day, we wait expectantly.
I almost never go to the cafeteria, even if my stomach growls, murmurs, or gurgles. I won’t go even when I crave a chocolate croissant. If I visit the bathroom at the far end of the hall, I always run both ways. I never want to miss the best time to ask questions and, sometimes, to hear answers from the doctors as they make their daily “rounds,” the time our medical team comes to see Nancy.
What did the urine culture grow?
How is Nancy’s liver holding up?
Can she eat a piece of toast yet?
Should her medicine dosage be changed?
Every facet of Nancy’s care is discussed during the rounds. (It seems so strange being on the opposite side of the bed. I’ve been part of a similar team my entire career.)
On rounds yesterday, our new attending physician, Dr. Pulsipher, pulled an index card from his back pocket. Smiling, he proclaimed, “Nancy’s platelet count this morning is up to 107,000. We can d/c (discontinue) her platelet transfusions. She’s now making her own.” He pauses, looks for confirmation from Jayna and me, and gives Nancy a thumb’s up: “This is the first concrete sign of engraftment.”
Isn’t it funny how a single number can change your entire outlook?
My whole body was suddenly warm and I fought back what seems at times to be my never-ending battle with tears. (How can I still be so emotional after nearly six months?) The reality is that I know too much. Though far less than 1% in bone marrow transplant patients, if engraftment fails, it is gravely serious. In both fact and reality, it means “game over.”
“And Nancy’s absolute neutrophil count is 420,” Dr. Pulsipher continued. “That means she is beginning to produce white cells, too.”
The role that platelets play in our bodies is to stop bleeding. Nancy has received them regularly the last two weeks because she had none of her own. But white cells? There is no such thing as a white cell transfusion. White cells fight infection. The “black cloud” of a deadly germ attack has hung ominously in our room for the last two weeks. Evidence that Nancy is now making her own infection-fighting cells is, in a word, huge.
“Once your white cell count is above 500, you’ve regained the ability to fight infections. And when you stay above 1,000, we can start taking away your IV antibiotics.”
I really fought my emotions at this point, and I bit my lower lip as my contacts suddenly got too blurry for me to see Nancy’s face.
“But when will I feel better, Dr. Pulsipher?”
Sometimes I forget that Nancy assesses things differently from me. (Numbers to her are only mildly interesting.) She may (or may not) ask me to explain a lab value like, “What’s a BUN?” She may (or may not) even reflect on what I have said even after I tell her: “Oh, now I understand. A normal BUN means my kidneys still function like they’re supposed to work” However, what makes Nancy happy is far more basic.
“When will it stop hurting to roll over?”
“When will my stomach accept food?”
“When will I feel better?”
Despite today’s lab numbers that made her medical team proud, Nancy is still struggling. She is still achy, nauseated, and tired.
“And why do I feel worse if my numbers are so good?”
“You have to realize, Nancy, there is an awful lot going on inside your body. As you produce white cells and immunity factors, your body may feel worse because your tissues are healing. We’ve blasted you with very powerful drugs to kill your leukemia. But the drugs are also very toxic. It will take a while to recover. We even have a special name, the ‘engraftment blues,’ for what you’re experiencing now. The engraftment blues are the time period when we are happy with how things are going and when we see your transplant starting to work. But it’s also when you don’t feel as good as you will soon.”
“The engraftment blues?”
I saw in Nancy’s face that she really understood.
“Fine,” she said.
“Can we do anything more for you today, Nancy? How about if we adjust your night meds so you can sleep better?”
“I’d really appreciate that, Dr. Pulsipher.”
The team doubled Nancy’s pain meds. So last night Nancy actually slept better than I did as I tossed and turned on the rollaway. She slept right through the shrill alarm that sounds every time there is air in her IV line or when one of her many medicines finishes. Her eyes remained closed when the nurses came in and out. Not even soft kisses on her head stirred her.
On today’s rounds, Dr. Pulsipher congratulated Nancy again: “You are officially engrafted, Nancy. Let me be the first to applaud your progress. Your absolute neutrophil (white blood cell) count is 1,74
0.”
“That’s great. Last night I slept the best I have in a long time.”
“I’m so glad to hear that. Now it’s time to start eating. If you want to leave the hospital, your absolute neutrophil count must be above a minimum 500 for three days in a row—which shouldn’t be a problem given today’s numbers. You can’t have a fever or sign of infection, and you must be taking most of your nutrition by mouth. It’s time to start working on that last requirement.”
“What can I eat?”
“We’ll start off slowly. Today you can have mashed potatoes or rice. If you can, try to eat at least one slice of toast. And no more restriction on the amount of your clear liquids.”
Nancy and I had two water toasts tonight before bed.
Our first salute was to a landmark day—Nancy’s engraftment day.
And our second tribute was to all of you.
P.S. In all honesty, we made a third toast to Sarah Ann Ezzel, a childhood friend of Nancy’s from Georgia. Sarah Anne visited Utah this week and provided some incredible help filling in for Jayna at the hospital. Nancy reveled in reliving memories from her past. (A pleasant escape from the present?)
Summary: Today was a very important day, Nancy’s engraftment day. According to her blood tests, her transplanted donor stem cells have finally set up “residence” in her body. She is now producing the cells she needs to move forward. Now we’re anxiously waiting for her to feel as good as her improving daily lab numbers.
Thanks for everything,
Winnie
One More Bite of Oatmeal
November 26, 7:47 p.m.
Dear Friends and Family,
When our attending, Dr. Pulsipher, arrived for his rounds today, he stunned us: “What would you think about going home on Wednesday? You can have a real Thanksgiving.”
Jayna and I looked at each other and I have no doubt that we immediately shared the same thoughts.
Are you serious?
That’s only forty-eight hours from now.
She still sleeps night and day.
She just started eating yesterday.
She couldn’t even take a single sip of water three weeks ago. (And when she did take a sip, she had a better than 50/50 chance of having the water come back up!)
Are you just trying to get her home before the holiday?
Nancy responded first, “Do you think I’m really ready, Dr. Pulsipher? I’m still a little tired.”
“If things keep going like they are, you’ll be fine. Just keep up your eating.”
“I’m trying, but it’s really hard. I don’t have much of an appetite even though I’m less nauseated almost every day.”
“That’s normal. Think of it this way—a Mack truck has run over your intestines. That’s the effect of pre-transplant medicines. You’re actually doing great. It’ll just take a little while longer.”
After the doctor left, I found myself wondering again about how long “a while” is, but my beloved partner answered the question by lunch. Nancy simply devoured everything on her plate—like every other challenge. Today she chose a new primary focus—food. And her target was oatmeal.
“I want to eat the whole bowl, Winnie. Can you add more sugar?”
Nancy’s words were somewhat mumbled, and I was only able to decipher her question because I was sitting close to her. I pieced together her desire only by piecing together her individual words and the situation. Her eyelids were open only enough to reveal the enticing blue underneath them. Though I added two sugars as fast as I could tear the packets, Nancy was snoring by the time the frosty white coating covered the remaining cereal.
“Sweetheart, do you want more?” I asked softly as I put my hand on her shoulder.
Nancy struggled to reopen her eyes; it was almost as if glue was preventing her from opening them again.
“Did I doze off, Winnie? I want to finish.”
I fed Nancy six more bites, reminding her to open her mouth and chew after each bite because she fell asleep after each one. As she looked down at a finally empty bowl, both of her shoulders rose for a deeply breathed sigh. Determination. An instant later, Nancy was back in dreamland.
She is going to be discharged in less than three days?
For her next meal, Nancy ate mashed sweet potatoes. But this time, it was without my help. “I’m practicing for Thanksgiving, Winnie. These potatoes actually taste pretty good.”
Chemotherapy has made everything taste different for Nancy. When I ask, Nancy summarizes her experience in this way.
“Most things taste bad.”
“The grape juice tastes like metal.”
“A bagel feels like cardboard when I swallow.”
To Nancy, it doesn’t matter because leaving the hospital is her goal. Her first bite most often causes a reflex frown, but then every swallow is followed by a triumphant smile.
Summary: Nancy has embraced a new goal—eating enough to be released to our Salt Lake City apartment in time for Thanksgiving.
Love,
Winnie
A Real Reason to Give Thanks
November 29, 6:50 p.m.
Dear Friends and Family,
By yesterday, Nancy could eat a full portion of something three times a day. She can now eat a banana, a cake donut with chocolate glaze, or some orange sherbet. There hasn’t been any vomiting or any diarrhea for more than four days. Most importantly, her IV food and fluids had nearly been discontinued.
“Are we really leaving the hospital today, Winnie? I’m a little nervous. I can’t imagine not being in bed, looking out the window at our lovely view of the mountains.”
I think to myself and admit silently, “Neither can I, my love.”
In fact, I can’t imagine taking Nancy to our new apartment. At this point, Room 507 feels secure, and I now take for granted that Nancy has made a significant transition. The blinds in Room 507 are always open now. Nancy is focusing on things outside our room. She’s come such a long way
Suddenly, I flash on a comment Nancy made at one “loopy” overmedicated point when she sat up abruptly from a deep sleep and declared, “I love this hotel room, don’t you?”
As I marvel at the view outside our window with Nancy, I also look at our many personal decorations. I must admit that I, too, have become attached to Room 507. Even though I have to walk the long hallway to reach the bathroom several times a day and even though it represents our scariest phase to date, Room 507 really has been a decent home.
In spite of this sentimentality, it’s time for us to take the next step. Nancy is willing. Once again, I am the one who is least prepared. My mind races like a stock car at the Daytona Speedway.
What will we cook?
How will we measure Nancy’s oxygen level and blood pressure?
What about her temperature readings?
Do we even own a thermometer?
“I can’t imagine it either, Nancy. I’ve gotten pretty good at being a nurse’s assistant’s assistant. I’ve even learned how to make hospital corners on your bed.”
In our apartment, Jayna and I will assume all nursing duties. But I face an even bigger worry and bigger questions.
Will I be forced to serve as Nancy’s doctor?
What if I have to decide if something is trivial or serious?
Why is this so much harder—it’s our fourth exit from the hospital since Memorial Day?
“Time to get the bins, Winnie. If we’re leaving, I want to be out before the clock strikes midnight. Let’s get packing.”
I turn toward the origination of the laughter and look into Nancy’s eyes—finding them especially bright. She knows. I kiss her head and she squeezes my hand with both of hers. I speak to her with just my eyes, as only a couple that have been married for as long as we have can. My moment of doubt is over, Nancy. I’m eager to blow this place, too. Let’s hope it’s the last time.
With my newfound energy, I decide to jog to the car to get the bins. As I stand up from my chair, the medical
team enters the room.
“Hi, Nancy, did you have a good night?”
“How are you feeling?”
“Much nausea?”
“Any diarrhea?”
“How tired are you compared to yesterday?”
I hear these routine questions but notice that the oncology fellow and the pharmacy resident standing behind our attending, Dr. Pulsipher, are shuffling their feet. They avoid eye contact.
Dr. Pulsipher finishes his questions, acknowledges Jayna and me with a nod, and then states, “Nancy, your liver enzymes took a jump today. We don’t know why. We’re thinking maybe we should postpone your departure until we sort this out.”
Nancy makes an audible sigh before quickly gathering herself and responding, “Oh? Really? What do you think’s happening, Dr. Pulsipher?”
“I suspect the rise is a reaction to one of the new oral medicines. But we want to be sure it’s not graft-versus-host disease. We should be able to tell in the next few days. We can shoot to get you out of here by the weekend. Can you make it to Saturday?”
Nancy’s look of disappointment quickly blends into a sunny smile. “Uh, I guess so. Sure.”
How does she do it?
My stomach instantly contains a knot.
Disappointment?
No. Much more.
Worry.
“Dr. Pulsipher, how likely is the enzyme elevation graft-versus-host?”
“Well, Winnie, Nancy has a 70–80% chance of developing graft-versus-host at some point during her recovery. If the graft attacks her liver, you will see the enzymes go up. More often, you see an elevation of her bilirubin level, and she will get jaundiced and turn yellow. That’s not happened. So right now, I’d have to say GVH (graft-versus-host) is not very likely. But we don’t want you to leave the hospital and have to come right back.”
“I agree. That would be devastating.” (I don’t say more devastating, though, truth be known, that is how this news has left me.) “Thanks, we’ll adjust. There’s nothing like Thanksgiving in the hospital.”
Night Reflections Page 22