Dear Friends and Family,
Our hope for a “short stay” in the hospital has faded like a winter sunset. Each ray of distant hope has been replaced by a cold reality.
Simply, we’re still here in the hospital.
Even though it is wonderful that Nancy is not receiving any “poison” chemotherapy drugs as she has in the last three hospital stays, this hospitalization has two very undesirable similarities to her initial trip to the hospital.
First, this visit was not scheduled like her other chemotherapy stays. It is entirely open ended. Regrettably, we have no idea of how long she will be in the hospital.
Second, during the other times Nancy was hospitalized, the focus was the treatment plan and hoping there were no major side effects. Now, like her first hospital admission, the focus is discovering the reason for Nancy’s symptoms and then, if possible, treating the root cause.
Consequently, this round seems considerably more ominous and it is very difficult for me to keep my chin up. But with Nancy to buoy my feelings and the great medical care we continue to receive, I hope to soon report that we are on our way home.
A story that began last night best illustrates our situation.
“Is your dance card full, my lady?” I say to Nancy after she alerts me she is in need of my help.
My comment elicits more than a smile from Nancy. After feigning a search of our mostly darkened room, Nancy bursts into a long, full laugh. (I still marvel at her amazing spirit. If you touched me, in contrast, I would break into a thousand pieces.)
“No one else here, Winnie. So I guess you’re stuck with me.”
As I wrap Nancy in my arms, I can’t help but feel the intense warmth of her 102.8-degree fever. I slowly guide her small, uncertain, shuffling feet until we reach the bathroom door as I cherish our closeness. I think to myself what a great idea. She’s not unsteady when I hold her like a dance partner. (Her previous trip to the bathroom was nearly a disaster. When she stumbled, I barely caught her in time to prevent what could have been a catastrophic fall.)
On the way back from the bathroom, I elicit a second laugh from Nancy with my off-key rendition of Strangers in the Night. We reached her bedside still in the dance position.
“Let’s do that again, Winnie. Probably within the hour.”
Nancy places a full kiss directly on my lips. Not a small kiss, mind you. Not a peck on my cheek. The room almost spins in the semidarkness. I feel like I’ve been transported back to the senior prom. “You must really be delirious, Nancy.”
It’s been a long time, my love.
“I’m not delirious. It’s my way of showing you how I feel.”
“You feel hot. You need to get back beneath the covers. You’re shivering.”
By the time I stretch four heavy, white blankets underneath her left arm and right foot, Nancy is asleep. I place multiple soft kisses on that beautiful bald head, barely visible in the light from the IV pump.
“Winnie, can I have another dance?”
I can’t help but think to myself as I get groggily up in the dark of our room, Already, Nancy? It’s three in the morning and it’s only been twenty minutes. Then more awake and with my wits more fully about me I say, “Let me help with your slippers, sweetie.”
“Hurry . . .”
By morning, my exhaustion is overshadowed by deeper and darker emotions:
Apprehension.
Melancholy.
Sunlight from the east heralds day seven of this hospitalization. It already is more than double our anticipated three-day return to the fifth floor of the University of Utah Hospital. Nancy has endured repeated blood tests, cultures of every part of her body, and multiple X-ray scans in search of a germ and where it might be hiding. So far, each examination has been negative. Good news, yes. However, each test is a search for an unwanted culprit.
Uncertainty extracts a large toll psychologically on both the caregiver and the patient. Nancy’s forehead wrinkles are now more visible. Her uplifting giggles are less frequent. She doesn’t want to be alone for long.
“What do you think this means, Winnie? I truly enjoyed our dances last night, despite your singing. But a bathroom waltz every half hour? Do you think my diarrhea will ever slow down?”
As I begin to formulate answers to Nancy’s tough questions, Richard enters our room. The most flamboyant of our nurses, Richard is usually more like our maître d’ than one of the hospital staff. Today he waves both hands in a full circle like a prop plane’s propellers as he glides gracefully toward Nancy.
“Hello there, Winns,” he says as he snatches up each of the four different juice boxes on Nancy’s bedside table. Then with a police officer-like voice, he declares, “Nancy, you are officially NPO (nothing per oral). No more fluids or food for you. You have graft-versus-host disease in your bowel. We have to rest it beginning immediately.”
Nancy’s mouth drops and tears form in both eyes, which no longer sparkle.
As an uncontrollable wave of heat races through my body and my face flushes I blurt out, “What are you saying, Richard?”
“Winnie, what I’m saying is that Nancy’s bathroom problems are indicative of GVH disease. Almost every allotransplant patient gets GVH—especially if they’re older than forty-five. The likelihood is something like 80%. Don’t look so shocked. Graft-versus-host disease isn’t all that bad. A little GVH protects against a leukemia recurrence.”
I want to immediately ask two questions: “How do we know Nancy’s GVH will be a ‘little?’” and “Why does it have to be now?” But I don’t ask either of my potential inquiries as I look at Nancy’s face and see that she is devastated because she has had her heart set on celebrating Christmas away from the hospital. My questions are not asked because I don’t want Nancy to hear the answers, and I realize that I’m not sure if I want to know the answers either. I simply hold Nancy’s head to my chest.
Richard saunters from the room with Nancy’s drinks, nodding his head since both hands are filled.
“I’m thirsty, Winnie.” Nancy murmurs. “I was just starting to taste things again.”
For a moment I feel like I’m watching a Mideast peace report on TV and everything is hopeless. I even fantasize about tackling Richard before he closes our door and pilfering at least one of the near-empty drinks from his hands. Instead, I say, “It’s all right, Nancy. GVH is just a new minor detour. You’re flexible, right?”
“I guess I still have leukemia, don’t I?”
Minutes later, our attending physician, Dr. Pulsipher, entered the room and confirmed our new concern: “We need to be sure about what’s happening to Nancy’s GI system, Winnie. We probably should do a colonoscopy as soon as we can reverse her blood thinners. If at all possible, we’ll shoot for tomorrow. I’ve already talked with Dr. Herbst, a gastroenterologist who works with our patients, and asked him to biopsy Nancy’s bowel. The pathologists can look at the tissue to see if immune cells are attacking it and then we can be sure about the diagnosis.”
“And if it’s GVH?” I whisper so as not to awaken Nancy.
“We will begin treatment. GVH is graded from one to four, with one being mild. If it’s mild GVH, we will simply rest her gut. If the grade is above one, we will start steroids.”
I sank very low in my chair as I heard this not welcome news.
“Remember, we expected Nancy to have GVH sometime and somewhere. Today is day fifty-two post-transplant. Again, let me remind you that it would be very common for her to have it.”
The next night, Nancy slept better than I did and we had far fewer “dances.” The good news is that her temperature remained normal for the entire night. So I left for work in the morning and headed to the mountains tired but encouraged and cautiously optimistic. Then several hours later, between seeing patients, I received a different update when I checked in with Jayna.
“Well, Dadder, Mom is feeling bad again. Her fever is back. The doctors are still worried about GVH. They want to study the upper part of her bowel on Monday if things don’t turn around.”
It has been a week of ups and downs. And this morning, Nancy expressed her disappointment and sadness. She described doubts and demons that constantly lurk in the back of her mind. Yet, like always, she recovered with new resolve and her incredible capacity to think of others.
“Winnie, now that I’ve gotten that off my chest, you know what I’m thinking? Everyone should be enjoying Christmas, not worrying about me. Maybe you, Jayna, and Jaret should go to Woodland for Christmas. What do you think?”
What do I think?
I think I have an incredible partner. I think that today I will try not to worry. I will just enjoy her company. And I think we will laugh at the thought of spending time away from Nancy during the holidays.
Summary: Nancy’s fever slowly disappeared early this week. We have no answers as to why the fever came or what caused it. With no evidence of infection, our path took a different turn. Our new worry is graft-versus-host (GVH) disease. A colon biopsy was another dead end, but Nancy’s symptoms continue and her fever is back.
With concern,
Winnie