Dear Friends and Family,
Nancy has spent the past three days uneventfully staying up into the wee hours, watching sitcoms with Jayna, reading about social anthropology with Jaret for one of his last college courses, and eating several meals regularly—though not as flamboyantly as at Ghidotti’s.
All in all, Nancy had continued to do well as we approached day one hundred.
On day ninety-seven after her bone marrow transplant, we returned to the hospital for a regularly scheduled visit. For a full day, we felt like we were school children scurrying from class to class as we completed the many parts of Nancy’s “one-hundred-day evaluation.” (The one-hundred-day evaluation is an intense look at how a patient’s body has tolerated the many medicines received during the bone marrow transplant process. The critical question is, “Have the many pills and IV medicines caused any damage?”)
We started our sessions with the hospital dentist, who closely scrutinized Nancy’s teeth and gums; moved on to the pulmonary function lab to check the health of Nancy’s lungs; and then headed to the hospital outpatient lab for a “gazillion” blood tests. We next traveled to the transplant lab where a skin biopsy was performed and they did an eye tear-making challenge test that would look for low-grade graft-versus-host disease.
Later in the day, Nancy underwent her first bone marrow test since the transplant to examine how the donor cells were “enjoying” their new home and to be certain there were no traces of leukemia. She also received a chest X-ray and an EKG and saw a gynecologist. It was a full day—to say the least.
Quite honestly, we were nervous as she went from office to office. At each stop there was a test. A passing grade was vital.
“Winnie, when you tell people I’m feeling good, it’s all relative. I definitely feel light years better compared to when I first got sick. I’m considerably improved especially when I think of how tired I was after the transplant. But I’m far from normal yet.”
As I listened intently to Nancy, I couldn’t help but think to myself: How well I know, my love. But I have seen hints this past week that you are gaining strength.
“I’m not complaining. I just don’t want our friends to think I’m ready to go out every night. I don’t want them to wonder why I may not have written back or returned calls.”
“I understand, Nancy,” I said out loud this time. “I think they do, too, but I’ll do better. I’ll tell them you’re a three or a four.”
We both enjoyed my “inside” joke. (Nancy is constantly asked to quantify her continuing leg pain on a one-to-ten scale. She always answers “a three or a four,” but we jest about her saying “twenty-five” or “minus seven” to see what kind of response she is able to provoke.)
Our conversation was interrupted as we entered the Blood and Marrow Transplant Clinic where Nancy would have the all-important bone marrow test. Laurie, the nurse, gave Nancy a hug and asked about the kids and Katie, the clerk, walked over to greet us. “It’s good to see you, Nancy. Have you enjoyed your time at the apartment?” Before Nancy could answer, Carly, the medical assistant checking in Nancy, frowned after reading the thermometer she had just removed from Nancy’s left ear. She quickly grabbed a different thermometer and tested Nancy’s right ear again.
“You did tell me you’re feeling good didn’t you, Nancy? You haven’t had a cough or diarrhea?”
Nancy shook her head, and I dropped mine lower.
“Well, Nancy, it appears you have a fever. 101.5 degrees. Let me get Malinda.”
Malinda was the nurse practitioner in charge of the clinic. By the time she arrived, Nancy’s temperature had been retaken in both ears, plus a glass thermometer was placed under her tongue. Each thermometer registered similar values. Elevated—averaging 101.6. Melinda reviewed the history, listened to Nancy’s lungs, and immediately ordered more tests.
I sat somewhat in a daze and stupor. I understood and followed each step being taken by the medical staff, but it still felt dreamlike and surreal. (No, actually it felt more like a nightmare.) I placed the back of my hand on Nancy’s forehead and was given the answer directly. Nancy felt hot. The thermometers were accurate.
“I’m sorry, Nancy and Winnie. To be safe, we’ll need to put you back in the hospital. You look so good, too. It should be a short visit.”
Did we celebrate one hundred days too early?
Is this the beginning of a serious infection?
How many steps backward have we taken this time?
Numerous questions raced through my mind as we waited twenty-four hours. Fortunately, a culture of Nancy’s blood revealed that she had a bacterium—staph.
“Isn’t the staph germ the one that kills people, Dr. Ford?”
Not the question I wanted her to ask, but that’s Nancy—ever straightforward.
“There are many different types of staph, Nancy. You have a common one that lives on the skin and, in all likelihood, contaminated your central IV line. We caught it really early, even before you had symptoms. I think it will be easy to treat.”
We were fortunate this week.
Yesterday, after only two days on the fifth floor of University of Utah Hospital, Nancy returned home to our apartment. We didn’t decorate her hospital room this time, and Jayna didn’t sleep there a single night. (I did, however.) Nancy is back on antibiotics into a new IV site, but she continues to feel good.
As we were leaving the hospital, she whispered, “At least a three or four,” in my ear as we exited into the sunshine and fresh air. Our brief hospital stay serves as a reminder that Nancy was very sick in the past (twenty-five on the one-to-ten scale) and that, even now, she remains fragile. Although today marks exactly one hundred days from the transplant, our journey is far from over.
So what happens on day one hundred?
Day one hundred is a significant milestone. Twenty percent of patients with Nancy’s condition don’t make it to day one hundred. Nancy’s brush with a systemic infection three days ago is a brutal reminder. I try not to dwell on what could have happened. We are so blessed to have had a coincidental hospital appointment. For once, luck was on our side.
Obstacles can still arise at the snap of a finger. So we will enjoy today to the fullest, as well as every other day that Nancy feels better than a “three” or “four.” But we have to remain ever vigilant.
Next week, after all the blood work and tests are completed, we will visit with Dr. Peterson to learn the post-one-hundred-day landscape. We already know Nancy will begin six months of decreasing medicine intake. The less her bone marrow is suppressed, the more it can protect against staph and other germs. It will be a balancing act, because more freedom means increased risk of graft-versus-host problems. But an end will be in sight, with the mountains in our future.
Upon reflection, we’ll postpone the fireworks today.
Instead we will meditate on where we were, how good things are now, and what’s truly important—friends and family.
Summary: Three days ago was Nancy’s day one hundred post-transplant. Day one hundred is a significant milestone for any bone marrow transplant patient. Day one hundred signifies that Nancy’s “baby steps” toward recovery are finally adding up. Nancy has undergone multiple tests to see how her body’s organs have fared, and we haven’t gotten any alarming results. It is particularly exciting given that Nancy had another two-day hospital stay earlier in the week that was unscheduled and unexpected. Fortunately, she is celebrating this milestone at home and feeling decent.
All my love,
Winnie