Dear Friends and Family,
To say I’m a bit excited about Nancy’s return home would be like saying I am a bit hungry after eating no food for an entire month.
My mind is overflowing with details. I’ve picked up about sixty feet of remote oxygen tubing so Nancy can walk through the house without pulling a canister of oxygen.
I’ve stockpiled dressing supplies, sterile gloves, needles, and the like.
I’ve checked and rechecked Nancy’s medicines, ensuring we have enough pills for her seventeen days at home.
There is still food to buy, cleaning to do, and calls to make. My list is long but not begrudged. I want this to be a singularly special time.
While relating so many of our day-to-day stories, I’ve omitted some medical details.
So it’s time to catch up.
Nancy’s blood status has improved dramatically. Her hematocrit, a test that measures the number of oxygen-carrying red blood cells, was so low she required transfusions every few days following the chemotherapy. That particular test is now normal.
Platelets, the particles that stop bleeding, were also low for most of this hospitalization. Nancy received platelet transfusions even more frequently than the red blood cells. Over the last week, her platelets have rocketed into the normal range. She’s allowed to blow her nose again. (The simple pleasures of life.)
Most importantly, Nancy’s infection-fighting white blood cells have finally rebounded. Her total white cell count is now at the same level as yours and mine. She no longer needs to wear a mask when she walks the hall on the eighth floor and will soon leave her artificially sterile world. (I’m probably allowed to kiss her on the lips, though it will feel strange. Which one of us will be more scared?)
Just nine days ago, Nancy had a fever to 105 degrees and rapidly developing pneumonia. Though nothing grew on the almost daily cultures, the infectious disease specialists suspected a fungus named Aspergillum. But the doctors were uncertain.
Uncertainty.
Uncertainty is part of our daily lives. We try to banish it to a remote corner of our brains. We try to exile it from our souls. Still it is always lurking.
At present, there are unwanted spots on Nancy’s chest X-ray, reflecting a remaining, uncertain dark force. We will complete the battle at home; Nancy will leave the hospital in remission from the leukemia, but still on oxygen and an antifungal medicine.
On an early morning bike ride a few days ago, I ran into a friend and female patient atop a mountain overlooking Park City. I was exhilarated to see the sun quickly ascending up over the horizon and she inhaled deeply and said, “Today is a new day, full of promise,” before waving and running off.
Her words echo my feelings today.
Nancy is coming home to rest and prepare for round two. But there is more to think about than the next round. Two days ago, we sat down with one of our oncologists, Dr. Elizabeth Prystas. “The High Priestess,” as Nancy has nicknamed her since the pronunciation is the same, took her customary seat next to Nancy’s bed. Though slight in build, Dr. Prystas has an unusually commanding presence.
“All of your numbers look good, Nancy. The pulmonary people tell me your lungs are improving rapidly. The infectious disease folks have you down to taking only one drug. Let’s plan on going home the day after tomorrow.”
“What happens next?” Nancy’s voice was steady, and her mind seemed clear. (A few days ago, she would have fallen asleep in the middle of a question.)
“Let’s see, we’ll plan on you coming back for the next phase of treatment in two weeks. No, since you’ll be leaving on a Friday, we’ll start again on a Monday. That’ll make it seventeen days.
“When you come back, we’ll start the treatment phase we call consolidation. Though you’re in remission now, experience tells us that if we don’t give you more chemotherapy, you will relapse. So we will plan on four rounds of consolidation.”
I can read Nancy’s face pretty well after more than a quarter century. There was disappointment in her eyes. Both of us thought there were only three more hospital stays. (Didn’t “Captain” Morton, the High Priestess’s partner tell us that?) Nancy coughed and turned away. When she turned back, her face was calm and composed.
“And what about a bone marrow transplant? Do we talk about that now?”
“Good question, Nancy. We’ll want you and Winnie to meet with the bone marrow team during your two-week holiday. Probably near the end of that time period, after you’ve gained strength and perspective. A transplant procedure is very difficult. Our decision will be when to do it. Though you’ve shown great resilience and toughness, we have to decide if we should consider a transplant early, after the first consolidation treatment. Or if we should save it as a rescue procedure—if the other treatments don’t work.”
“What would you do, Dr. Prystas?”
I was dumbfounded by this question. Until today, Nancy had not wanted information beyond the near horizon. With some real lows recently, I had worried about Nancy’s resolve.
But now?
Nancy was stepping up to the plate and swinging for the big picture.
The High Priestess has short, black hair that surrounds a soft, kind face. Her dark-blue eyes overflow with compassion. She speaks in a voice that could say, “Your son is going to Iraq,” and you’d think it was all right. But I almost fell off my chair when Dr. Prystas responded, “Your leukemia seems to be a good one, treatmentwise. Personally, I would do the four consolidation courses and hope you are in the 15–20% that get cured.”
My face flushed with blood—15–20%?
How can the survival rates keep changing?
At one time, the “Captain” told us “almost 50%.”
Another time it was 30–40%. I even wrote those numbers down.
Once again, I fought back against the moisture behind my contacts.
Dr. Prystas continued: “I’d wait and see. I would save the transplant in case the leukemia returns.”
Unlike me, Nancy’s expression was serene. Unlike me, she was ready. When I squeezed her hand, she squeezed back. More tightly.
Summary: Nancy’ blood work is reflecting a positive reality. It is a new day, full of promise—but a little less than yesterday.
With much love,
Winnie