Dear Friends and Family,
As promised in an earlier letter, I have some unpleasant news to relate. I’ve kept my medical update compartmentalized in a corner of my mind until I was feeling emotionally strong enough to bring it to the forefront.
Up until this point, I mostly live in the present. I concentrate on Nancy’s upcoming meal, her current chemotherapy treatment, or an X-ray that may occur later in the day. Though I plan the next day each evening, I rarely address a future weekend or look ahead to when I might have two days off from work.
My “same-day-only” planning is about to change. Nancy and I are facing serious decisions. They are not straightforward or easy. There is a fork in the road regarding her care and we must choose which path to pursue.
Nancy has greatly enjoyed her home “vacation,” especially since she feels “normal.” Unlike the previous time she came home, she has not been tied to an IV or oxygen source. Being “unhooked” has allowed her to walk outside each day amid the trees and flowers, dine with her closest buddies at quiet restaurants, go shopping with Jayna, share popcorn with me at movies, and even host an open house attended by many of our local supporters. (For those of you who couldn’t attend, the party was spectacular; Nancy beamed for hours and had a wonderful time seeing friends, both old and new.)
During the past week, while appearing to be carefree and fancy-free, we have been gathering information in order to decide whether to continue with three additional hospital-based chemotherapy courses or instead consider an unmatched (i.e., non-sibling) bone marrow transplant as soon as a donor can be identified.
To put our decision (and story) in context, we need to return to the day before Nancy left the hospital.
When he entered our room for his daily visit, Nancy greeted our Captain with, “Dr. Morton, I’ve been wanting to tell you something for a long time.” Nancy paused, waiting until she was certain she commanded Dr. Morton’s complete attention and he had pulled up a chair close to Nancy’s bed: “You saved my life. Thank you.”
“Captain” Morton, our oncologist, is tall, thin, and bespectacled. He appears more like a college professor than a doctor. (Of course, who am I to talk? I once was handed a broom while an intern in the hospital.) Though only in his early fifties, Dr. Morton has barely more hair than Nancy. He always speaks slowly and softly, thereby projecting a gentle demeanor. He’ll discuss his golf game, his son in Portland, and Nancy’s disease all in the same visit. True, Dr. Morton maintains an appropriate professional distance, but after two and a half months, there is a readily apparent fondness toward Nancy.
As a cancer specialist, Dr. Morton deals with suffering and death on an intimate and almost daily basis. He probably endures more patient deaths in a single month than I do in a decade. But when Nancy, in her straightforward and sincere manner, stated, “You saved my life. Thank you.” Dr. Morton appeared to be in uncharted territory. His face turned bright red and he squirmed visibly in his chair.
“Uh . . . That’s my job, Nancy. I’m sure your husband does the same kind of thing.”
(I relate this conversation secondhand from Jayna, who called me at my day job in Park City when it occurred. Jayna sobbed as she related it.)
“Well, Winnie has saved a few people over the years,” Nancy replied. “But not my life. If he was here, he’d thank you, too.”
Dr. Morton started to speak but instead rose and made his way even closer to Nancy’s bedside. Putting a hand on her shoulder, he smiled. Nancy returned his smile, a smile I can easily picture from Jayna’s words: Glowing. Captivating. Intimate. And at that point, telling him it was all right to connect more than usual.
“Thank you, Nancy,” he said in barely a whisper.
Nancy has always had a special influence on those around her.
I did arrive at the hospital in the early afternoon, in time to participate in a visit from Dr. Finn Bo Peterson, the transplant surgeon Dr. Morton had consulted, who quickly concluded, “After discussing your case with our team, we recommend you move to transplant as soon as possible.”
Dr. Peterson explained that he had just reviewed Nancy’s history, lab findings, and two hospital courses. But his conclusion was very different from what we had planned. In fact, it was totally different from what we expected. And most distressing, it was entirely different from what we had been told by Dr. Morton.
Dr. Morton’s words from yesterday, when I was present for his visit, echoed in my mind: “I recommend going through four courses of chemotherapy and saving any bone marrow transplant for what we call ‘rescue therapy.’ If you relapse, that’s when to consider a transplant. I’m hoping you won’t ever need one.”
The round of chemotherapy we are just now completing has gone relatively smoothly. Though Nancy did have a superficial blood clot and a secondary infection, we’ve been encouraged because she’s feeling better and stronger than when she entered the hospital. She is poised to leave a full week ahead of schedule.
But now Dr. Peterson was presenting a wholly different opinion.
Hadn’t Dr. Peterson talked with Dr. Morton?
Where I was speechless, Nancy wasn’t: “Dr. Peterson, I’m confused. We’ve been operating under the assumption that a bone marrow transplant was saved for last. And only if things didn’t work out. I think Dr. Morton called it ‘rescue’ therapy.”
“Well, Nancy. If you have the four courses of AraC chemotherapy alone, unfortunately, you only have a 5–10% chance of survival.”
Jayna and I looked at each other simultaneously, and a tear immediately rolled down her cheek.
We’d just finally adjusted to and accepted the 30–40% chance Dr. Morton gave Nancy after we learned she was not in the 70% cure group for the M3 type of acute myeloid leukemia initially diagnosed.
How could the numbers change again?
How could they be so bad?
My face felt hot. My fingers tingled. Nancy was doing great, “cruising,” according to Dr. Morton. He seemed excited when he anointed her his most “boring patient.” In reality, I wanted to scream out loud. Instead, I gathered as calm a tone as I could muster and said, “Wait a minute, Dr. Peterson. I must be missing something? We’ve been told that Nancy has a 30–40% chance with just chemotherapy. Her leukemia seems very sensitive to the medicines.” Although I consciously tried to suppress my emotions for Nancy, my voice did crack in the middle. Nancy nervously rubbed her arm.
Dr. Peterson was not fazed by my question or my cracking voice: “Well, Dr. Winn, sometimes there are different ways to look at data. With Nancy’s age and the number of abnormal white cells in her blood when she first got sick, I believe that chemotherapy alone will not be successful.”
After Dr. Peterson’s response, I don’t think I listened much.
Five to ten percent survival?
I vaguely recall Nancy confirming our insurance, acknowledging that her brother and sister’s bone marrow tests hadn’t matched, and discussing the next steps in moving toward a transplant. The process sounded long and tedious. I tried to concentrate but kept flashing on the 10% number. I just wanted to get to the end of this encounter.
When the meeting concluded and Dr. Peterson left, Jayna and Nancy didn’t speak. Instinctively, the three of us hugged as a group, my left shoulder wet from Jayna’s tears, my right from Nancy’s.
Over two months into this ordeal, and it was only the third time I’d witnessed Nancy’s tears.
I gently stroked Nancy’s head, which was warm on my chest. She looked at me with still-moist eyes: “I’m so confused. I don’t understand.”
A single tear ran down her left cheek. “I was feeling positive.”
How could things keep changing?
Why hadn’t Dr. Morton and Dr. Peterson coordinated their stories?
How could we have been subjected to Dr. Peterson’s interpretations without warning?
A simple “Dr. Peterson looks at things differently than I do. Don’t be too alarmed if he uses different numbers and makes different recommendations. We’ll discuss it later.” would have been nice. Instead, just as we were cautiously proceeding down one path—we fell off a cliff.
No, we were pushed.
The three of us remained silent for what seemed an eternity. I paced the room trying to clear my head, to find a compartment for my anger and disappointment.
Should I call Dr. Morton right now or wait until his visit tomorrow?
I’m the “sleepover” person, I reasoned, and I don’t work until 3:30 p.m. tomorrow at the clinic in Park City.
Can I make it until the morning feeling the way I do?
Remember, he saved her life, I told myself.
But how could this happen?
Nancy grabbed my arm as I passed by her bed: “Relax, Winnie. Sit beside me.” Her eyes had regained their sparkle. And they were dry. Nancy laughed, “Look at you. I’m the one with the leukemia. We’ll be fine.”
Nancy poked me in the ribs until I begrudgingly laughed. Then she continued, “All right, I’m the leukie, not you. And I’m feeling pretty good, now that I think about it. Dr. Peterson said that with a transplant, my chance is 50–55%. Those are better odds than the 40% from Dr. Morton. He also said it didn’t matter that Linda and Jim aren’t able to donate marrow if we use the special procedure he plans. What did he call it?”
Before I could answer, Jayna did: “A mini-transplant, Mom.” (Jayna watches Jeopardy every day with Nancy. I believe it’s part of their closeness—part of their ritual. So she has lots of practice answering questions rapidly.)
I confirmed, “He did say that, Nancy. And it was a term I didn’t recognize. I have lots of reading and research to do.”
“Remember, Winnie, you’re my husband—not the doctor.”
“I know,” I answered.
(I didn’t add what I was also thinking—more than you can imagine, my love.)
Summary: This morning I shared part one of “how our lives are once again jumbled and twisted in every direction.” I will compose part two early tomorrow.
Our best,
Winnie