I’m sitting in the hospital awaiting an infusion. These are strange words to write for two reasons. I haven’t been here in three weeks. I’ve got no evidence of disease.
I feel too healthy to be here.
On October 3rd I got my latest set of scans back and they were clean, save some holes in my bones where tumors once were. No cancer, no new or old sites of disease. No evidence of disease at all. This is the best news we could hope for — and yet, it changes almost nothing. In the past couple weeks, I’ve been carefully walking through the thorny tangle that NED represents. It means we beat back the cancer I had, shrunk the tumors and froze them in place. It means the taxol worked — may continue to work in the future, should I need to return to it — that my body responds well to chemo. It means we bought me up to a year off heavy treatment, punctured only by antibody infusions every three weeks to keep the cancer at bay. It means there’s still cancer in my body, invisible, slowly defrosting from its chemo freeze and preparing to move. It means I’m ahead in the race, for now, but not for good. Never for good.
It means the tumors will regrow. The cancer will come back.
I have said this before: I do not fear death.
This morning, while waiting to go into my first appointment, I was scanning facebook and came across the following that a friend had posted: “Be brave. Be honest. Be kind.” I said these words almost verbatim last night — my version a slightly modified Goethe quote: “Be honest, be bold, and mighty forces will come to your aid.” I live by these words. I promised myself long ago I would never turn back — I would never let fear halt my headlong run forward toward reality. When I made this promise, I did not know how sharply those words would resonate when I was diagnosed stage iv, when suddenly fear was something almost palpable, endless. When fear took on a shape of its own, no longer abstract or momentary but specific, stubborn, permanent.
My restaging to NED does not change my terminal status, but it also does not change my perspective. It may grant me a break from chemo — which is incredible for itself — but it does not grant me the luxury to turn my head and avert my eyes from the reality that stands, heavy and dark in front of me. Rather, so much of my sanity rests on the recognition of that reality, my willingness to be honest to it. If I can stare this disease in the face, run headlong toward its bitter persistence, I can chase off the cloud of fear and doubt that hovers around it. I think, oddly enough, of the groundglass that manifested as a dark shadow around my original tumor in 2010. We took a scalpel to it, cut through that haze to more clearly see the shape and space underneath.
Be honest. Be bold.
I do not know where my insistence toward reality comes from, or what fuels my willingness to grapple with it even now. I am not especially brave, or strong, or insightful. I wonder how it would feel to lean on NED as a crutch, to let it carry me far from the dark mass I’ve been running toward, give that shape the space to cloud over again, disappear behind a mist that resembles reality but does not touch it. I wonder but I will not let that happen. Instead, I continue to move, stubborn and steady, toward that shadow, challenging it to dispel the cloud and let me see underneath. Each moment gives me the opportunity to move forward again, to reach the next moment. Each step is closer to a reality I cannot anticipate or imagine but know I want to feel the contours of.
And so I do not fear this. I do not fear death. Death is always a reality, always a force, even in these good days. But I wonder if — no, I know, I can feel — the real we are granted in life is more palpable and heavy than death. The opportunity to move forward lends us strength each time we choose to take it. I think of a night Kate and I sat on the edge of the Res at one in the morning and leaned our heads together, facing the water. “No breaks. No time off.” We vowed no denial, no hand waving, no distractions from reality. We knew the path we etched in our minds would be difficult and painful. But we also knew that it would be suffused with light, with the texture and force of something we could only see and feel beneath our feet if we ran toward what we feared. What we fear now. What we know, we remember, is still coming.
I know — I can feel, because I believe true knowledge is lodged in our bodies, in the core of ourselves nested near our hearts, hovering above our diaphragms — that only on the path to that fear can we find reality, the dense and weighted joy of life. I wonder if fear and joy do not occupy the same space, if they do not live next to one another. If to know joy, you must know, recognize, and face fear. That running toward fear is necessary to know a joy that is not easy or fleeting, but instead more recalls an old and rough stone, sitting quiet and solid in the bed of a lake. Darkened with the time that has passed, full of its own force. Present. Real. Permanent.
Be bold, and mighty forces will come to your aid.
I feel that force is joy. I feel that force is love.