Somehow myself survived the Night
And entered with the day
Henceforth, I take my living place.
It is a “heart to heart.” It is not with me, but with him—him being someone with knowledge of the disease, with credentials and whom she trusts. What she says to him, what he says to her, they do not share face to face but through the medium of electronic mail. And, what was said to each other shows up as a forwarded message to me, her friend and confidant. The subject line reads: Help.
She writes to him what occurs to her, at the time it occurs to her. It is 3:18 in the morning when it occurs to her that she has had metastatic breast cancer for 9 years. What occur to me are the words of St. John of the Cross; “In the dark night of the soul it is always 3 o’clock in the morning.”
She knows only one other woman who has the disease that long. She has talked to other people who say there are two others and she’d like to believe there are more than 4. But, how many?
She writes him and asks, “What is the outside limit?” He should know. It’s 1999 and he is scientific director at the National Cancer Institute’s Division of Clinical Sciences. They met when she, a nationally recognized patient advocate and co-founder of the National Breast Cancer Coalition, served with him on the Human Genome Project.
She explains, “I know the outside limit is a moving target but if I were to have a heart to heart with someone with knowledge who I really trust what would you say. Count on 3 years, hope for a lifetime… count on 6 years, hope for a lifetime…count on 10 years, hope for a lifetime or would you say, I just don’t know. Sorry to ask such difficult questions”
His reply begins with an “O” without the h, a long vowel made longer, that sounds like a howl. He admits, “What can anyone say about that which God only knows.”
He can only tell her what he has observed as a physician and cancer researcher, that “second and third relapses are not good to have—that is a sad reality. Timelines of months to years are what we consider in these cases. It is hard to say whether it is one or three or five, projecting into decades is very unusual.”
I hear myself scream, “She is unusual!”
He goes on to tell her, “But these are doctors’ predictions, which I always hope I am wrong.”
Although his gentle words were intended to provide a soft landing, I couldn’t bear to face the harsh reality that statistics were not on her side. I reminded myself that doctors before him offered a dire prognosis and she’s still alive. I am a writer and would like to change the ending to this story.
It was around this time that I found myself straddling the worlds of literature and medicine. At the same cancer center in Vermont that my friend was being treated, I accepted a position to help patients navigate the healthcare system, which opened the door to facilitating an expressive writing program. Time and again I heard compelling stories of illness and an understanding of the difficult task that doctor’s faced in reconciling patients to “bad news.” I encouraged patients to share their writing with doctors, which often led to meaningful discussions about their concerns and goals of care. My friend participated in the program and it was one of the writing exercises that helped prompt asking the question about “how much time she had” and her plea for truth.
After reading their email exchange, I asked, “Would it be alright if I told him what I thought of his response to your difficult question.” She urged me to enter their conversation.
Using the touch pad on my laptop I found his email address, which contained the acronyms nci.nih.gov. And, with a single tap, I was there and now relying on the left hemisphere of the brain where logic rules, where people with credentials reside—a place I don’t.
With some trepidation I placed my words on the page.
Dear Dr. Liu,
You do not know me; I know you through Pat Barr, who is my best friend. It is not a credential but our relationship empowers me with confidence. I do not travel in her world of politics or policy. My world is one of an emotional language, it is what I speak and know. I often worry, maybe pass judgement, that out there in her world no one speaks to that which God only knows.
I was wrong. You were asked a difficult question; one that God is asked in the dark night of the soul. I find it not coincidental that you answered her at 3:26 in the morning with grace, with the truth as you know it, and with hope. I just thought I would let you know.
With my utmost respect,
Celia Engel Bandman
His reply appeared within a few minutes.
I am moved by your acknowledgement. My patients have taught me a deep sense of humility. Despite the bravado and posturing we must do in this “policy” world, I am in my most private core, as emotional and frightened a person as many that you and I know. My strength comes with the knowledge that there is a just God out there and that the injustices that I see will be rectified somewhere else. This I feel without being of any single denomination.
Please accept my thanks. It made my bureaucratic day.
Reading this email exchange of some 22 years ago still takes my breath away. When I recently contacted Dr. Liu to ask permission to include his words for this essay, it stirred old memories that “nearly moved [him] to tears.” He confided, “I count your article, when it gets published, as one of the most important pieces with which I’ve been associated. You are the author, not I, but it describes the persona I would like most to be remembered as. It may surprise you, but more than any scientific contribution, your description of a lasting individual impact is what resonates with me.”
Pat died in 2003. I still want to scream. But, like Dr. Liu, I am reminded that whether we are a friend or medical scientist, relationships anchor memories, especially those attached to heartfelt 3 am conversations about the uncertain course of incurable illness.