What It’s Like to Know You’re Dying
I’ve had cancer for 15 years, and I now see the exit door up ahead
My life with an incurable, progressive cancer now in its 15th year is always shifting.
It is almost (almost) easier — after so many years (15), after so many appointments (hundreds), after so many blood draws (beyond count) — to say out loud, “I now know what dying feels like and I now know that I am starting to die.”
I said that very sentence to my husband Warren over breakfast, much to my surprise and shock. And then I could not speak, because my voice broke and tears ran down my face.
Tears of longing and love and, damn it, sorrow.
Everything up until now has just been a rehearsal, lines from a play that I knew would be staged sometime in the future, but not yet, not now. It is not yet now, the immediate now of hospice and comfort care only. But it is the now of realizing deep in my core being that something essential is changing within me.
I have often paraphrased Atul Gawande’s magnificent, heartbreaking description of living with an incurable, progressive cancer such as the multiple myeloma I carry in my marrow. After Gawande notes that such a cancer can often come under control and the patient can feel better, “the disease, while slowed, continues progressing, like a night brigade taking out perimeter defenses.”
The night brigade in my marrow has been tirelessly working. They are there in black fatigues, grease strips on their cheeks and noses, weapons ready. They are kneeling at the barbed wire with cutters in their hands.
So what does this mean, this new recognition that something has irrevocably shifted within me?
It means I am more than willing to consider stopping treatment. It means I am realizing and finally (finally) accepting that I have only a finite amount of energy left, let alone time.
But what does it really mean?
It means I have to start saying goodbye in earnest. Without comprehending consciously what I was doing, I now see that I have been quietly removing myself from the mix: a birthday celebration here, a coffee date there. I now see that I am baking less, doing less. It means I now understand, instead of just paying the idea lip service, that the day will come when trips to the Pacific Northwest to see my children and grandchildren will end.
It’s been a lot to think about and come to terms with. I’m not there yet.
But this new realization means something else. Something that has taken me by surprise. By saying “I am dying” out loud, something else has opened up, something essential and, for me, profound. It is as if a wall has come down. This wall is akin to the fourth wall that performers refer to: the invisible wall that separates the performer from the audience.
A fourth wall between here and there? Between me and the world? I don’t know what to call it, so I will call it that: my fourth wall.
My fourth wall has come down. I am seeing and experiencing the world — the physical world, the inner world, the other world — acutely differently. It is more real, more immediate. The colors are more intense, the tastes and smells and flavors sharper, the moments sweeter.
I do not know what is next in my mortal life, this world at hand.
By way of example, I am penning this column in longhand sitting at an afternoon choral concert in which Warren is accompanying on timpani. There have been times that the music would cause me to levitate if I were capable, all from this fourth wall coming down. While the music swells around me, I stop writing, look up, listen to the voices hanging in the air, and marvel.
It is a stunning way to live.
I do not know what is next in my mortal life, this world at hand. I have not made the final decision to stop treatment. I am, after discussion with my Mayo oncologist of five years, on a waitlist for a BiTE (bispecific T-cell engager) trial; he assured me that if my name rises to the top, I can decline to participate. My local oncologist who has been with me from the onset listened quietly, nodded, and said, “Persist.”
I have not yet announced my retirement, but my supervisor and I have opened up that discussion. (I regret to note that I made her tear up when I told her what I wanted to talk about, causing her to say, “I don’t cry at work.” She doesn’t.) We are changing some of my duties because they are physically beyond me. I am still going to develop that new program a colleague and I pitched, but we will train another person to lead it because I am not well enough.
And in the deep quiet of the night, when the night brigade wakes me (as it does more and more frequently), I move closer to Warren, knowing that I want the sense of his nearness — of him being right there — to be one of the last sensations I know in this life.
I hope I’m not going anywhere just yet. But now I can see the exit up ahead, the door marked “Push to Open.”
In the newly published The First Cell: And the Human Costs of Pursuing Cancer to the Last, oncologist and author Azra Raza reminds the reader: “Dying is not a failure. Denying death is.”
Keeping her counsel in mind, I move toward that door, trusting when I reach it that my push is firm and certain.