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 1,740.”
“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