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.”
“Actually, tomorrow you should plan on a pass. Leave for a few hours and have a nonhospital meal. The more Nancy eats the better.”
“Don’t worry, Dr. Pulsipher. I’m sure I’ll eat a lot tomorrow. I even liked the taste of something the other day. What was it, Winnie?”
“Sweet potatoes.”
“Well, Nancy,” Dr. Pulsipher responded with a smile, “Plan on lots of sweet potatoes. I’ll be in to see you early in the morning so you can leave here at a decent hour.”
I endure another long night as I constantly find myself thinking about Nancy’s elevated liver enzymes. I wonder if the lab finding is trivial or the beginning of significant liver damage? I rationalize that Nancy has done so well, better than anyone anticipated. Her meds certainly could be the culprit. Almost every one of them is processed through her liver. But what if it’s graft-versus-host disease?
Much to my delight, Nancy awakens when the early morning rays touch her face. (Remember, we haven’t closed the blinds in days.) Recently, she’s slept through sun, all the room lights, and most of the noises that emanate from the hallway outside our room. Nancy barely says good morning before she confirms today’s plans: “Winnie, guess what? I actually feel hungry. I might try some ham today. Happy Thanksgiving!”
“Perfect! Jayna is already at the apartment cooking a ham for you. I can’t wait. Happy Thanksgiving, sweetheart.”
Dr. Pulsipher and the fellow from oncology interrupt our conversation before Nancy and I have an opportunity to talk about the rest of our day ahead. Not surprising, given the holiday, they are without their normal entourage of students, nurses, and other medical professionals. Even better, they are a full hour earlier than their usual time for visiting Nancy.
“Good morning, Nancy and Winnie. We’ve decided against you going out on a pass. We want to discharge you instead. Your liver enzymes are nearly normal this morning. The elevation must have been a transient reaction to one of your new medicines. Congratulations!”
November 29, Thanksgiving.
It is a day that will forever be remembered in the Winn family archives. Our family will not only be together, but we will be together outside of a hospital. We will breathe nonfiltered outside air and feel direct, unfiltered natural sunlight. Within an hour, Nancy is riding in our car beside me. She has remembered to fasten her seat belt and she is listening to the radio, just like a normal person.
At the apartment, there is no need for a tray to be placed on Nancy’s lap. She is sitting at a real dining room table. Her bed is actually in its own separate room. No more bells or buzzers. No interruptions. No IV pole.
Freedom.
Nancy eats her home-cooked ham on real dishes. She adds salt to the sweet potatoes from a saltshaker that is not disposable. Her silverware will go into a dishwasher rather than a trash basket. She asks for seconds on sweet potatoes that are served from a dish on the table.
Thanksgiving.
After just under a month and a half confined to a single hospital room, our holiday meal together is as notable and enjoyable as the step through the revolving hospital door that we playfully went around in twice as we were leaving today.
Still I can’t help but wonder if everything will be “normal” now?
It is too early to know.
But there is one thing we know for sure: we know that we have many things to be thankful for.
P.S. Alain, Jayna’s Peruvian boyfriend, was denied entry to the United States for the second time. We are unable to figure out why. Jayna has had quite a year, but she too has much to be thankful for.
Summary: Happy Thanksgiving to each of you. Believe it or not, we are no longer in the hospital. We enjoyed a fitting holiday celebration after forty-three days in the hospital. Nancy is thirty-three days post-transplant and still has no serious infection and no significant organ damage. She does have a functioning, brand-new immune system. So today I “froze” a snapshot of our family with the camera that is my memory. Today was a Thanksgiving that none of us will ever forget. We have much to be thankful for—Nancy’s present health and our deep and abiding friendships with each of you.
Fondly,
Winnie