Directions

It’s taken me awhile to come around to writing this post. I’ve opened up this page and stared at the blank text box a number of times, wondering how to begin, or even where to go from there. The last week I’ve spent shifting in and out of panic, trying to ground myself in experiences and ideas I want to last into the future, less to hold onto them and more to prove that I have a future. And each time, that exercise — pushing against time and hoping the pressure I exert on it will extend it further — is a lot more daunting and taxing than I remembered it being. Or it fails. Mostly it fails.

Around 1:30 in the morning on the 4th of July, I was driving through an empty Newton Center with my windows down and music up. Every summer since I was about 16, I’ve collected a music playlist as the weeks roll on, throwing songs onto a series of mix tapes, or CDs, or now playlists on my phone, that encircle the atmosphere of the season. Last year it was a mix of pop and rap; the year before that, offbeat folk and rock. This year, it seems to be more eclectic — I’m grabbing songs from randomized moments in my life, spanning genres and time periods without much attention to how they sit together. But each one means something to me, or means something new now.

“I’m feeling rough I’m feeling raw in the prime of my life.”

Almost a week ago now, Tuesday morning at 9:30, I sat with two of my closest friends in my oncologist’s office waiting to be told that my scans were clean and I would be coming off taxol. And when her first sentence started “So, your scans are good–” I almost didn’t listen to the rest.

“So, your scans are good–”

“–But there’s still a number of tumors on your liver — they’re smaller, and the largest has shrunk to about half its original size — and we could take you off taxol, but–”

Ever since I could drive, I’ve had this inclination to just keep driving when I feel overwhelmed by stress and anxiety. Depression takes me to graveyards almost instinctively (really, Kiara?), but fear just puts me on the road. The day before my mastectomy in February 2011 I almost drove straight up 95 North to New Hampshire and then Maine, wondering if I could talk my way over the border with just my driver’s license and a promise that I was a Canadian citizen.

“I’ll move to Paris, shoot some heroin, and fuck with the stars/You man the island and the cocaine and the elegant cars.”

I’ve been driving a lot these days.

Good scans. Good scans are good. I don’t even remember the context or words she used next, but the words “5 years” came up. And “70% dosage with a week off every two weeks.” Somewhere, in the time between then and now, something hit me: we were scaling back my treatment because quality of life was taking over quantity. This is not the 10-15 years I had been counting on. We have a five year plan because two years is the average survival time with these tumors, this pathology, this cancer, and — as my oncologist said — “we don’t have many 28 year old cancer patients who horseback ride and rock climb like you.” Two to five years. I am young, at least, and energetic, but I don’t know if this is a blessing or a curse.

“This is our decision, to live fast and die young./We’ve got the vision, now let’s have some fun.”

Those who I care most about and I have spent the better part of the last week feeling the contours of this new timeframe, testing its boundaries and its meanings. A mania is settling into the relationships I have with those I love — we spend as much time as we can together, because we know how short that time is — but there’s also a solidarity and so, so much comfort in that condensed time. The two friends who sat with me that day in my oncologist’s office and I are making plans for the fall, when I’m off chemo, to take trips that are normally out of a graduate student’s financial and schematic wheelhouse. We’re filing my days with insane activities, things I would never think to try or do in the past. Kate and I walked to the T with open bottles of beer in broad daylight, singing and laughing at the top of our lungs. We sit on the porch and drink wine, talk about ontology and who we are, how we fit in. Where we’re supposed to fit. If this is a question of fit at all.

We talk. We talk for hours, into and then out of the morning, deep into the night. Kate and I sat in her living room until two in the morning recently dipping into and out of laugher, tears, fear, joy. I kept thinking we are hearing the sound of my voice, putting it in the air so that it echoes in the atmosphere once they can’t hear it anymore. We are saving my voice for later.

“I’ll miss the playgrounds and the animals and digging up worms./I’ll miss the comfort of my mother and the weight of the world./I’ll miss my sister, miss my father, miss my dog and my home./Yeah, I’ll miss the boredom and the freedom and the time spent alone.”

The longest I will probably ever be off chemo is 9 months to a year. I wanted shoulder length hair again and now I almost wish I hadn’t shaved it. My treatment plan going forward is dense, unforgiving, and unending. I may see NED days, but they will not change the outcome of this disease. I knew all this in March, but in the last week I feel as if I’m learning it all over — with less shock, less overt panic, less anxiety, but the same weightiness. It never gets easy, it never gets normal. Instead, it turns into a new normal that suffocates the old, addresses it everyday with the same face.

“But there is really nothing, nothing we can do./Love must be forgotten, life can always start anew.”

I want my time left to meaning something more dense, more forgiving, more unending. I want my time left to leave those I am leaving with a force and a presence that will push them beyond the fear of what’s to come.

We talk because I want those I leave behind to know me, to have not bounded memories of me but a bigger sense of who I am — who I was. A palpable shape, a shape we are discovering and putting into words that will outlast my body. We talk because my words and their words — serious, or flippant, or sad, or infused with light — are all we have for the moment. We talk because the act of talking, of being together, pushes against the reality of death — not to deny it, or invalidate it, but to shift the space it occupies. We talk because I am more than my death, despite how soon or undeniable it is. And we talk because we know what to talk about, we know how to situate all this in a space that settles it.

Soon, I can feel it, we will get into my car and drive north — we will extend into space and grow with it. We will prepare for me to scatter.

Kate said: “I know what you are. You are big. You are love.”

“We were fated to pretend.”

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7 thoughts on “Directions

  1. Ouf. Rough news, Kiara. You should know that, already, your manner of facing your prognosis and of discussing your experiences is leaving an impression. If any of your inspired travels take you to Seattle, let me know. All the best to you.

  2. You can meet me at the Wateville exit on I-95 in Maine any time, sweetie, and we can go off into the woods for an R&R. Driving when depressed, you and me both. Love, /c

  3. I was led here by a link shared amongst mutual friends. There is nothing for me to say except to repeat what you already know (this is horrible) and to thank you for your writing. You are here and remembered.

  4. Keep writing, love. Your thesis, this blog, words sent out to the world. That is the best possible scattering, the most durable, the most widespread.

    “So long as men can breathe, and eyes can see/ So long lives this, and this gives life to thee.”

  5. i may be wrong, but i don’t necessarily believe they are scaling back your chemo to choose quality of life over quantity. i think they want to get by with the least amount of chemo that still produces stability of NED. oncos always save something else for later and there are a lot more HER2 drugs in the wings. they would certainly want you healthy, walking the fine line of chemo dose. i hope you don’t bog yourself down too much on the idea that it’s an end game now. i would bet that is far from the reality. v

  6. You have a brilliant way with words, Kiara and I wish you many happy travels and hope you find all the strength you need and then some.

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