Secret Keeper

It is 1:21 am. Objectively, this is too late for a cancer/chemo patient to be awake the day of an infusion — I’m tired, sore, have a weird pain/swelling in the back right corner of my mouth, feel like I’m suffering a continual hot flash, and my skin is tight and sensitive.

I also can’t sleep because I’m still floating with the energy of the day — and the night.

I don’t expect infusion days to be fun. But every so often — and more and more often, given the wonderful company I’ve had for the last five or so — they surprise me. My chemo entourage (or posse or minions, depending on which chemo nurse you’re talking to) is a group of fabulous gals who accompany me each week. We spend my infusions eating way too much food, watching bad TV (today was a series of horrifyingly weird children’s TV shows), playing card games, and joking around. We are the loudest and most obnoxious people on the chemo ward. We get in the nurses’ way, steal heated blankets from the machine, and hoard way too much free food. We are loved by everyone.

These girls are my life raft these days.

But even in the midst of what I’ve come to expect is going to be a fun day, there are still moments that surprise me with their loveliness and joy. The entirety of today and tonight was one of those moments. Tonight in particular.

After a bittersweet goodbye dinner for Super Roommate (one of the entourage and one of the greatest girls I know), Climbing Buddy Twin and I decided to brown bag it down to the reservoir and sit by the water telling stories. “I want to tell you my ontology,” she said to me, “And I want to know yours.” And so, in true summer fashion — because I have always ornamented and so associated summer with long walks, long talks, and hours spent sitting in moonlight — we took three hours of the night and tossed around and played with the orientation of ourselves in a wider world, our ideas about time and the lessons we learn in it, our sense of what’s true and what’s right. It was reaffirming in the way that only articulating your sense of self can be — and I needed it, especially in the face of this diagnosis. And I walked away with this.

I’m a secret keeper. This has always been my job. I collect what those around me want to tell me — I learn the ways they situate themselves within their lives and the events around them, I listen to the lessons they’ve learned and the experiences they’ve lived. I collect stories. I hold them in my head and let them resonate with me; I pay close attention to the words people use to articulate their lives. I love hearing others’ stories — I love hearing what they believe, why they believe it, what struggles have given them depth and texture, how they came to evolve into the people they are.

And somewhere, in the middle of all these stories, I find the outline of myself. I’ve always imagined that I’m using these stories to tend and grow a great tree and that, in the empty space between a series of branches that imprints across the sky, my sense of self is drawn. Like those “find it” drawings in children’s magazines growing up, where a fox or an airplane sit silhouetted against the drawing’s backdrop, I am defined by what’s around me.

My second diagnosis severely upset this balance. Suddenly, my tree seemed to shake and crack — none of the stories I collected made sense or helped me take shape. The ground beneath me slid and fell in a sudden, dramatic tectonic shift that upset my roots and threatened to topple the tree itself. In those first few months after my diagnosis, everything was a terrible, mobile panic, and my tree wavered and kept trying to find new shapes that would accommodate this sudden new reality. I could not make sense of the cancer returning, let alone a terminal diagnosis. My tree was dying — and too quickly.

But I’m a secret keeper. And my secrets were still intact.

And at some point tonight, while I was sifting through and piecing together these ideas — thoughts I had not articulated for years, but had known silently, and so no longer as well as I once had — I remembered my senior thesis on Gravity’s Rainbow and the intricate folds of my final chapter that held the piece as a whole together. At the end of the novel, Pynchon’s protagonist transcends into the Veld and undergoes a sparagmos that sends the remnants of his body and soul across the novel’s playing field. In the strictest Greek sense, sparagmos is a kind of sacrifice or grotesque dismemberment, but I always imagined Slothrop’s sparagmos as a kind of letting go or dissolution. Something he underwent as he moved to another plane — something that expanded and then released his totality to those left behind.

I know I’ll die relatively young. I don’t know that I’ve always known this, or had some sense of it, but it stands in such sharp resolution now that it feels like a permanent truth. But my tree of stories was never bound by time or even my body anyway. And my sense of who I am that the tree outlines is not fixed by the branches — it lives in the sky, out there. And as I stumbled through these ideas with CBT tonight — much like I’m stumbling through them now — it hit me that I’m okay with that. I will die before my friends and family. And my tree will burst apart, scatter its stories among my own life’s playing ground, distribute the narratives that give me shape among those about whom I care the most.

And while we were sitting there, at the edge of the reservoir at midnight, CBT took my hand and said, “Kiara, I will be there. I won’t need a day off, or a week, or a month, or anytime at all. I will always be here with you.” And it hit me then — the stories I collect, the closeness I cultivate with those I love through those stories, will survive me. I am a secret keeper, and the bonds those secrets grow are what give me shape. That tree of stories, of secrets, of narratives, keeps growing despite the ground shifting beneath it. In fact, that mobility is crucial to the way we experience our lives — that unsteadiness, that sense of being unsettled makes our shapes more flexible, dexterous, and agile. Because in the end, we only have each other, and the constantly shifting relationship of ourselves to that wider, alive world defines who we are. We hang onto each other as rafts because we can only stay afloat with the support of each other; I can grow that tree only with the stories and lives of others who design its branches, its leaves, its trunk.

And soon, my stories will scatter, expand and dissolve into the space I leave; but they will never disappear. My tree is light, and bending, and so at that point its new shape will have as much — if not more — resonance than its current shape. It is almost 2 am now and, despite the discomfort and pain of treatment, I am still a secret keeper; I still have the bonds of those stories and those who I share those bonds with. And so, I am still, and will be, okay.


At the Present

I’m beginning to feel anticipatory about my scans. Thursday is Week 11 of taxol, and next Thursday I have a CAT scan before my infusions on Week 12. I’m not nervous (okay maybe I am a little nervous), but I want to get off taxol — really, who wouldn’t — and so I’m starting to anticipate how I can get my life back to normal once that happens. I’m starting to think about what vacations I might go on this summer, starting to go out more, starting to ride a bit more, climb a bit harder — a lot of starting, but without the freeform joy that typically surrounds the activities I love. I’m starting everything I can, but I’m also worried I’ll have to stop or once again scale back these things if we find out my scans are not good.

I don’t know what 12 more weeks of taxol would feel like. Ten is pretty bad.

This past weekend, my urge to pretend to have a normal life (or at least start to pretend I have one) got the better of me. On Sunday, I decided that climbing for four hours on my roughest day was a good idea. My climbing buddy/twin separated at birth brought along her fiancee and we bouldered, top roped, and bouldered all afternoon. Kept saying we were done and then stayed longer. Kept ignoring the searing pain in my back, arms, and hands. Finally gave up when the call of wings at a bar down the road was too strong to ignore.

And then Monday we went back.

If you climb, you know you’re not really supposed to climb two days in a row. Your muscles and tendons can’t quite take it and don’t have the opportunity to recover. There’s almost no way you’ll be competent enough to improve or learn anything on day two. But Climbing Buddy Twin and I couldn’t resist — Sundays we don’t normally climb and we’re both pretty attached to our Monday/Wednesday/Friday climbing schedule. So Monday found us at the gym again, ready to do an “easy day” after our four hour intensity (insanity) on Sunday.

Three hours later…

CBT and I are frighteningly similar and (unsurprisingly, then) egg each other on — so after some bouldering and four climbs, we both started upping the ante. Somehow, climb five for me turned into a crimpy (small, uncomfortable holds) and challenging 5.10 on an arete that was definitely out of my range of ability. After about the first third, I think I fell at every move. Two moves from the top, I looked up to yet another small, impossible hold and thought seriously about giving up. My body felt as if it had been beaten with metal rods (and this was through 800 mg of ibuprofen), I could barely breathe, and I didn’t think my hands could possibly grab another little green piece of plastic to save my life.

Then another version of Kiara kicked in — and out loud. “Fuck this, fuck chemo, fuck cancer, I’m climbing this shit!” And up I went — in two smooth moves, no less. CBT and I cheered as she lowered me to the ground.

I don’t know what kind of adrenalin kicked in at those last moments, but some kind did. Maybe it was the desire to be normal for 5 seconds, maybe it was the fear of Week 12’s scans pushing off that possibility once more, maybe it was the fear of Week 11 somehow being worse than Week 10 already was. Maybe it was the almost insatiable longing I have for my life before cancer and my desire to reconnect with that life on an almost daily basis. Whatever it was, it worked — and more importantly, it reminded me that I can tap into whatever kind of adrenalin or energy or hope it was to start to feel and be normal again. I don’t always need to long or wish for or even miss the past, even if the past was objectively easier. My life is possible in the present.

Yesterday morning, I read in an article about young cancer fighters/survivors a quote from one woman who was diagnosed with stage four cervical cancer at 26: “My life without cancer would have been happy, but it might not have been this happy.” Cancer is not a blessing, but it does open up new opportunities, even as it closes off others. I wanted to be lead climbing by now, and chemo’s impact on my progress prevented that from happening. But maybe, without the frustration of chemo and treatment and my diagnosis, I wouldn’t have sended that 5.10 quite so well or with quite the same determination.

And now I’m wondering: if there’s Normal Kiara, and Chemo Kiara, who’s the Kiara I’m living now? She’s definitely distinct from the other incarnations of myself — she’s a bit more carefully thoughtful, but also more focused and willing to take new risks that my old self (selves?) wouldn’t have entertained. She’s also a bit rougher around the edges — a bit less willing to be patient or wait for things to get better or happen on their own (like I did much of that in the past anyway). She may have never come about if my cancer hadn’t come back, and so in some strange way I have this awful terminal illness to thank for that.

She’s also still developing — testing the waters. Stay tuned. I have a weird feeling she’ll have something fun to contribute.

The Port

This weekend I visited my brother in Brooklyn. Once upon a time, I lived there — and now I miss it, terribly. It’s more than possible that the fact that I can never return makes the city look more appealing from afar, since when I lived there I know I often felt overwhelmed, exhausted, and overstimulated. But I know I also came to a steady, though at times barely balanced, peace with the place after I had lived there for long enough to learn its streets. As one of my favorite novels claims of a kind of spatial knowledge of a similar city, “There are maps and there are maps and there are maps.” And as Brooklyn and the wider cast of New York City became known to me and those maps resolved into a tangled but distinct series of layers and threads — geopolitical, cultural, artistic, and even the subway lines — I learned to love its hyper-dimensionality, its density.

And being back this weekend reminded me of that. Wandering the Brooklyn Flea — which I had forgotten I had even gone to before getting there, it’s weird how memory works — I was faced again with the inevitable cluster of artifacts that New York City and its burroughs is known for. And the brownstones and the flecks of light that ran through early summer city leaves, and the curious graffiti on sidewalks or the one manned pizza places or C-Town — yep, I even missed a grocery chain.

And here, on the other end of my life now — Boston, a city I’m still learning to find bits and pieces of that I can maybe learn to love — I’m faced with another inevitable. On Thursday, my oncologist is going to tell me I need to get a port.

I hate writing those words. Or needing to write them.

I’ve been putting off a port for a long time, enough so that writing about it makes me anxious and nervous. The thought of a permanent implant that I need because of cancer that pushes against my sternum and shifts the shape of my skin leaves me feeling  disconnected from myself — and, oddly enough, from time. Since discovering that I couldn’t avoid the port any longer I’ve been thinking almost obsessively about last summer, which was (arguably) the most fun summer of my life. And also the most chaotic. And I spent time in Brooklyn. Go figure.

I remember — in the way I always imagined The Great Gatsby (no, I haven’t seen the movie yet and I don’t know that I will) remembers, moving through a series of slow but complicated movements under a bed sheet, or a veil — playing wall ball against the back of my elementary school at eleven at night; charging back to a cabin in a steady, thick downpour on what suddenly turned into a stormy late afternoon, only to give up and walk slowly in the final mile, soaked but happy; the bizarrely ancient and frightening mechanical cow puppets that adorn one particular stretch of the Hershey Park tour ride; sitting by a fountain on Georgetown’s campus until early into the morning with water bottles full of tequila (which, for a series of reasons, was my alcohol of choice last summer), orange juice, and lemonade; stopping at a spring on the side of a dirt road to get fresh water and never figuring out — even though we went 10 or 15 times — how to fill my water bottle without getting soaked; sitting crowded and sweaty in a not too dark bar in Brooklyn, ordering absurd drinks and listening to a friend’s band, complete with a stirring horn section; looking down at my cowboy boots while trying to maneuver a chainsaw to cut through the trunk of a fallen tree and suddenly realizing that I finally had my energy back after treatment. That I finally felt real again.

I don’t know what these memories do for me now, but I know why they’re orbiting my consciousness. I’m apprehensive about the port because it signals a kind of finality, a kind of permanence that refuses the possibility of that kind of itinerant summer again. I lived out of my truck for 2 months; 2 suitcases, kayaks, laptop and DVDs. The longest I slept in the same space was 2 weeks. Now I’ll have a surgical implant that reminds me, constantly, “You have to come back to Boston — at the very least and if things go as well as they can — every 3 weeks.” And though that 3 weeks leaves plenty of time to travel, it also marks my life with a regularity I’m not accustomed to. The steady march of medical progress on my cancer orients my body toward this city — a city that I’m apprehensive about to begin with. But maybe those memories push me in that direction with more energy or more clarity. They are reminders, remainders, that once existed, that I still and will always have in storage. So I wonder if these remembered snapshots offer some kind of glimpse into a normal life — not because I can have it again, but simply because it was once out there and lived.

And if the primary reason I write here is to craft a letter to myself when I’m at my worst — to have words by which I can remember that I do feel good, that I can be strong, that I can be happy — then those memories are part of that equation. I don’t know that they give me hope — memories, these days, make me sad — but they give me something once tangible that still feels real enough to make treatment worth it. Even if the port is more real, more immediate, more pressing, I still existed without one once.

I miss Brooklyn. I miss my wandering, suffused summer. I miss me without cancer, without the edge of reality creeping up on me, drenched in what feels like a blinding light. Soon I will miss me without a port. But I won’t have to miss those memories; I have those.

The Good and the Bad

I’ve been thinking a lot recently about the balance between misery and happiness and how the two are woven together. Especially in the wake of my second diagnosis and everything that’s happened over the last two months, I’ve had to really hone in on how I can best process grief, or anger, or pain, or sadness so as not to hold onto them. Because I know — I’ve seen firsthand, in myself and others — when we don’t express our unhappiness, get it out of our minds, share it with others, it festers in us and destroys what happy moments we do have. Unhappiness, when it’s held onto, becomes inarticulate and overwhelming, can change our memories, our experiences, and inflect our lives with sadness and fear. It makes the happy moments disappear; it makes the miserable ones more pronounced.

Very often it strikes me that the first six weeks after my diagnosis were this awful, out of body, living nightmare. My life had been suddenly cut short — and when you’re a planner like me, losing time that you counted on takes so much away from you. A week or so after my diagnosis, I was prescribed anti-anxiety and anti-depression medication which wouldn’t kick in for 4-6 weeks. I was on steroids for the first six weeks of treatment, and they would leave me irritated, angry, and miserable, ready to snap at any moment. I was on chemo again — a particular kind I’ve been on before and I know works, but one that also slams me with physical side effects and sends my brain into a tailspin. Nothing made sense; everything seemed horrible. I didn’t feel like myself. I woke up every morning after only a few hours of rough sleep and thought: “Okay, get up. This sucks, but get up.” By nighttime, I was exhausted and overwhelmed, angry, miserable, and frustrated with the world. It wouldn’t take much to push me over the edge then, and about two nights a week of those initial six I would have a total meltdown and panic out of sheer exhaustion and fear and anger — a break with reality those around me had to weather. Didn’t matter what it was about — everything made me upset.

Then I woke up. At some point in mid May, I got off steroids, my medication kicked in, and the reality of my cancer started to set in after a long six weeks of processing, letting out, and letting go of all that fear and anger and misery. I had a relatively good week when things weren’t perfect, but I felt more in control and more stable than I had in a long time. I finally felt like I was getting a sense of my life back. I knew there were still rough moments coming, but I also knew they wouldn’t kill me and I’d get through them and get over them, just like I got through the last six weeks. I knew I could move through and then let go of the sadness and pain that was to come.

And then my now ex-boyfiend and I broke up. And, though the nightmare was over, suddenly reality seemed much, much worse.

Just when I finished going through every emotion imaginable I had to experience most of them again. I was exhausted and confused and miserable. I had no idea what had become of my life or where it had gone — I wanted to press rewind and start over from January, do everything differently. I wanted my life back. I just wanted everything to settle down so I could catch my breath, have life be normal for a change.

But that’s not how it works. Life isn’t and has never been fair or easy. And so I did again what I always do in times of crisis: I looked the pain I felt in the face and refused to blink, ran at it head on. And the process of staring it down — like it always has been — was tiresome, rough, and painful. I experienced the grief that accompanies loss firsthand; sometimes it left me crying, sometimes yelling, sometimes silent. But I never ran from it or shoved it into a corner or responded in any way other than how my body and mind told me to. Because, as I mentioned earlier, I knew from past experience that if we don’t share or communicate or openly experience our fears and pain the way that’s best for us, they turn into something much worse. Something inarticulate. Something that expands and follows us months after the actual event has occurred. If we don’t take responsibility for our pain and articulate what hurts us, we can never let it go.

And as bad as the process of facing our pain feels, and as hard as it can be for everyone involved, it’s necessary. Especially when others are involved, we need to be brave enough to both share that pain with them and brace for when they share pain with us (or as a  friend said to me over dinner last night, “Sometimes you just need to nut up and take it, and then let it go”). We need to go through our own experiences and very often be punching bags for others as they move through theirs (and sometimes we call this fighting — another ugly but necessary fact of life). And as awful as that feels and looks, as much as in the moment our reactions may be emotional and hurtful, that process moves us through that pain, all those fears, all that anger, and releases them into the wild. It does not kill us — in fact, it makes pain tolerable because it lets us identify, get over, and let go of what hurts. It makes us stronger, more capable, more self aware people. It clears our heads and makes room for better things. Most importantly, it clears the space for happiness.

I was on my way to visit Super Pony today when suddenly I realized I felt happy. I’ve been tracking this for awhile — noting when I feel happy and how long it lasts. For the most part, it’s been fleeting these last two weeks. I’ll be happy for an hour, and then sad again for much longer. But this time, it didn’t let go. I turned up at the barn, found out Super Pony had thrown a shoe and so couldn’t be ridden, did my barn work, played with Super Pony in his field, went to the grain store to buy more food, and headed home. And on the way home, I turned up my music and sang and danced along — something I know I only do when I’m happy. And I had done it on the way out too.

And this is AWESOME (my all caps should prove that alone). Because when I’m happy — which is most of the time, just not lately — I know I’m this fantastic, fun person. I’m energetic and full of life and excited to be along for the ride. And I love to share that energy with others or use it in ways that can help those around me feel the same.

This doesn’t mean I won’t be sad again — because I will. But I know what it does mean is that I’m on the right track. I can take a punch and get back up again. I can be comfortable  expressing my own pain in ways that make sense to me and helping those around me express and understand theirs in ways that make sense to them. I can live and love freely, without hesitation or encumbrance. Some crises will derail that for awhile (see: getting diagnosed with terminal cancer), but as I’ve always known — I can ride out the bad times, let them go, and get ready for more good times. Because there will always be bad times; there will always be moments that seem unbearable or horribly frightening or miserable. And in fact, those bad times almost don’t matter. We have to learn to experience them and then let them go.

It’s the good times that do matter. And I have lots of good ones left.