Words for Stage 4

Yesterday I sat in my PhD Seminar for the first time since being diagnosed with stage four metastatic breast cancer. I wrote in my notebook, at the top of that day’s entry, “Two days to go.” And last night, while climbing with my boyfriend, I turned to him after I finished my first route of the night and said “One and a half days to go.” And today, while I was walking to my bone scan and then echo, I said to myself, “One day to go.”

The first time I was diagnosed with cancer — stage 3 invasive breast cancer in October 2010 — we had a contained, bounded plan of attack. Chemo, surgery, chemo, radiation, biologic. Pills that I would take for five years. Every stage had a time associated with it, an end. A date of completion. I began treatment in October 2010 and by May 2012 I was finished with everything that required me to be in the hospital more than once a month. By early July I had escaped from everything — both literally and metaphorically — and was ready to press restart and no longer be a cancer victim.

I’ve been counting down the days because stage four is so different. I’m down to hours — 18 now — until I may never be out of treatment again. Until I will be in treatment, or, at best, in and out of treatment, for the rest of my life. There is no ending to anchor myself in; no metaphorical or literal escape. My plans for the future, the future I envisioned for myself, have totally shifted, a process I’m still working through and trying to understand.

One day to go. 18 hours. Stage four is code for metastatic, the adjectival form of metastasize: “Of a disease, especially a tumour: to spread from one part or organ to another; to undergo metastasis.” That’s the Oxford English Dictionary’s definition; its rhetoric leads me here: my cancer has metastasized to my lungs, liver, bones, and lymph nodes. In the cancer ward, metastatic is also silently code for terminal, which means my ending point is cancer.

This all sounds terribly depressing, and if I think about it with that kind of scope it is. I don’t feel as if I have a terminal disease — then again, I haven’t started chemo yet — and my body doesn’t know its time is limited any more than it did a month ago. When I try to make that move — translate into a language my body can understand the fact my mind has been parsing through for two weeks — I put the pressure of duration on something that cannot comprehend the passage of time, only its immediacy. Our bodies are incapable of understanding time as extended beyond their immediate sensations; the reason long term physical pain wrecks such havoc on our sanities is because it destabilizes our bodies’ senses of normalcy, of consistency, of peace. So my body can’t understand it has terminal cancer, or that it’s timeline has vastly shifted.

And in truth, my timeline never changed; I was just unaware of its particulars, or of how short it could be (as I still am, in some ways). I suppose that indeterminacy, or that nebulous sense of time is what will save me in the coming years. A good friend of mine also has stage 4 terminal breast cancer, and like me was originally diagnosed as non-stage 4 a few years ago, and now feels the weight of anger and frustration around this new diagnosis. And for something to feel alien and frustrating at once is even more anger provoking — who are we to be angry with? Our bodies? Cancer? There is no villain here.

But — stage 4, metastasis, terminal — whatever words hang onto the definition of my cancer, I still have my life, a life with time that surpasses the cancer and its treatments. My body will be confused over the coming months and years — in and out of treatment, pain, infusions — but my mind will reassure it — you still have time. You still have some health, some energy, to hold onto.

I wanted this first entry to be more uplifting, but until I settle into the routine of treatment the prospect of returning somewhere I have theoretically been, and yet never been before, is overwhelming. The disconnect between my mind and body can only be bridged once my body knows what’s happening as well. So bring on chemo; let’s get my body on board. Let’s write cancer in a language I, as a human, can understand.


4 thoughts on “Words for Stage 4

  1. You never cease to astonish me. Whatever happens, Kiara, your impact on the world, immediate and far-reaching, has been and will be profound. That is the best any of us can hope for. And for you, my dearest girl, I hope for that and far, far more. It’s the thing with feathers that heralded our announcement of your birth, and the thing that will lift and buoy you on its wings, far above us, as you navigate these uncharted skies. I bless these words, your great gift to us. Thanks, and great love.

  2. Sweetheart, At a time like this words seem to fail me. And yet, words are all I have to express my love for you. In a way, I’ve never been prouder (if that’s even possible). I’ve always been in awe of you–your energy and strength, your beauty, your grace. God bless you. I can’t have asked for a more wonderful daughter. Love, Dad

  3. In NYC it is required that every emergency stair way have florescent strips on the stair edges, lighting the way when the power goes out and the world goes dark. Through this tragedy that has befallen you, I see you taking your spirit, energy and gifted writing skill and creating those florescent strips for others to follow when their future grows dark. As you proceed forward, you are creating a legacy of thought for others to follow and of pride for those who know and love you. None of us can possibly imagine what you are going through, yet your words bring us close to that unfathomable point. But keep in mind, the final chapter hasn’t been written yet.

  4. There are NO words in me Kiara after reading your words.
    I am left speeches by your courage , bravery and honesty. Cling high and long dear child

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