Dear Friends and Family,
How can a single day have such extremes?
Leukemia—the name on the side of our new personal roller coaster.
Let me explain.
This morning, I awakened feeling positive and upbeat. Jayna is set to board a plane this evening. Nancy has been cleared to begin a new drug specific to her AML subtype, M3. Our nurse even brought me my very own breakfast tray from a patient who had gone for surgery, thereby saving a trip to the cafeteria. Bright and cheery, Nancy commanded me to concentrate on my “other” patients. “Go to work,” she declared, pointing to the large, round clock on the wall opposite her bed, “It’s time . . .” I swallowed the last bite of French toast and raced to the parking lot.
As I drove up the mountain to Park City from Salt Lake City where I spent the night in my now familiar chair, it almost felt like a normal day. Within a half hour, I had treated one of my favorite patients, seven-year-old Johnny Hernandez, for strep throat and followed that with putting stitches into the arm of one of Jayna’s classmates, Amanda Lester. Unlike when sitting in Nancy’s hospital room, I felt the power of providing care rather than witnessing it. I walked taller than I have in days.
In an instant, however, everything has changed.
As prearranged, Nancy’s nurse called my mobile phone with the morning progress report just as I had requested. Her voice was flat. “Things are not so good here, Winnie. You better come right away.” I didn’t ask for nor want details.
My partners have already made their support clear. After the emergency meeting they held the day I told them about Nancy’s illness, I received a unanimous message relayed by Joe Ferriter, our CEO: “Work as much or as little as is best for your family, Winnie. We will cover you.”
As a result, with no hesitation, I told my medical assistant, Mindy, I was leaving, threw my stethoscope in my desk drawer, and sprinted for the exit seconds after I hung up with Nancy’s nurse. I was lucky there were no patrol officers on the highway to Salt Lake City. Not a single car passed me while speeding down the mountain on Interstate 80.
Twenty-five minutes after exiting the clinic, I was back in my now accustomed chair next to Nancy’s bed, hanging on every word uttered by her oncologist, Dr. Elizabeth Prystas.
“Most leukemics start off treatment pretty well, and at about two weeks, things get a little bit rough. However, with Nancy’s M3 type of leukemia, things are going to get tough right away. I know it’s distressing seeing Nancy struggle, but it’s not uncommon for this to happen.”
I glanced at Nancy beside me on the bed. Her face was mostly obscured by the oxygen mask covering it, delivering 15 liters (or 45%) of inspired oxygen. I wished I didn’t know that 15 liters was a very high concentration of oxygen for any patient to receive. Despite the oxygen, Nancy was working hard just to breathe. Each of her breaths was rapid and labored. Through the mask, I could see that her face was puffy, as were the tissues surrounding her eyes. Worse yet, her futile attempt to give Dr. Prystas a brief smile was familiar to me.
Pain.
My stomach was tied in knots. For most of the conversation, Nancy appeared far away. Dr. Prystas witnessed what I saw as well. She stopped trying to include Nancy in our discussion. When Nancy’s eyes closed, Dr. Prystas motioned for me to join her in the hallway. I squeezed Nancy’s hand and blew her a kiss as I left the room. Nancy’s eyes remained shut. She didn’t squeeze back.
Dr. Prystas closed the door and continued: “Nancy started a new chemotherapy medicine, ATRA, this morning. Though it’s very specific in fighting her type of leukemia, it sometimes causes breathing problems. However, we still have to consider other possibilities. She could have a lung infection. Or she could be bleeding into her lungs from her low platelets. If Nancy gets worse, we’ll put her in the intensive care unit. As I’m sure you noticed, we’re already supplementing her oxygen at the highest level. If it’s not enough or she tires from her increased breathing effort, she may need respiratory support. We’ve asked a pulmonologist to help us.”
I could feel my face flush and my legs weaken. Nancy might be transferred to the ICU? She might need a respirator? A lung specialist will see her? As I connected the dots, I leaned against the wall, in need of support. The unthinkable stared me in the face.
Could Nancy die after a single day of the new treatment?
What happened to the 70% cure rate?
All I could mumble to Dr. Prystas was, “Thanks for keeping me informed.”
Dr. Prystas momentarily put her hand on my shoulder, nodded her respectful condolence, and turned away and headed down the hall.
How could things have gone so wrong, so rapidly?
Last night Nancy looked almost normal. We talked and laughed (and I cried when she fell asleep). She slept the entire night. She shooed me away to work.
But now?
Nancy was far away. And struggling. I pulled my chair close to her bed and put her hand between both of mine. Again. My mind raced.
Will Jayna get home from Peru in time?
Why did I think I could go to work today?
And the one question that has become my daily personal balancing act: Is it time to call Nancy’s mother, sister, and brother in Georgia again?
Summary: Things are not going well right now.
Love,
Winnie