Day and Night

My first round of taxol was back in the late fall and early winter of 2010. No one in my family had ever had any kind of cancer, let alone gone through treatment. I didn’t know what to expect, but I knew it wasn’t going to be fun. I very quickly collected and synthesized all the information I was given about my treatment cycle; I made spreadsheets and folders and timelines. To say cancer felt like a game or a project would be a gross and oversimplified misrepresentation, but one of the overwhelming themes of my organizational — and indeed, more abstract — approach was just that: organization.

I had a timeline (literally: I printed out a sheet of paper with fun fonts and images, including a breast cancer My Little Pony). 16 weeks of taxol and lapatnib; 4 weeks off; surgery; 4 weeks off; 12 weeks of A/C; 1 year of herceptin; 28 radiation sessions; 5 years of tamoxifen. All numbers, all countable, all with an end point. Even when several of my organs failed and my oncologist and I decided to end my participation in the initial clinical trial, my timeline otherwise remained intact and merely shifted up 7 weeks. I remember writing the new dates on a post it note and pinning it above my desk. Days, weeks, months. Always countable.

I don’t have folders this time. No timelines, no post it notes.

The first time around, when friends and family urged me through treatment, they unintentionally tapped into that sense of time. “You’ll beat this,” or “You’ll totally kick cancer’s ass,” or “You’re so tough, you’ll be fine.” Back then, those things had the potential — as many of us imagined, the certainty — of being true. Treatment would end, I would beat cancer, I would be cured. There would come a moment, a time, when my cancer was in the past, when all that remained of the harrowing 10 months of intensive treatment would be a scar, a strangely practical tattoo, and a silicon implant that many women in Hollywood would pay thousands of dollars to have.

As I’ve pointed out on this blog before, the road I’m staring down this time looks much different. No end points, no long term or definitive timelines. The only certainty I have is the treatment itself — not how long it will last or that it will end. Just that it will be there. That, in fact, it won’t end.

More than once, those around me have naturally fallen back on the same rhetoric we used before. The first time around, I believed it. Now, I’m not so sure. “You’ll beat this?” Not likely. “You’ll totally kick cancer’s ass?” No, not in the end I won’t. “You’re so tough, you’ll be fine?” Doesn’t matter how tough I am. Cancer doesn’t respond to your energy, your attitude, or your outlook on life. It’s an aggressive disease that specializes in cell mutation, a process that has nothing to do with your way of thinking or behaving. In the wake of my first diagnosis, I said many times, “Cancer is a medical problem, not a personal problem,” most often to explain how I could remain so positive in the face of such a frightening disease. Though I am doing my best (and, I think, succeeding) to remain positive again, I’m now tempted to recruit those words for a different cause.

Being a terminal cancer patient is an isolating experience and, if I’m being honest, that kind of kick-cancer’s-ass rhetoric can reinforce that isolation. It can negate or displace the reality of my diagnosis — a reality I have to live with everyday. It can draw a fine but sharp line between my world and the world in which everyone around me lives. It can make me feel as if there’s something wrong with me because I can’t just put blinders on and imagine that I will definitely and magically beat cancer. And, most poignantly, it can make me feel like a failure: when, ultimately, I don’t beat it, I don’t kick cancer’s ass, I don’t turn out fine, I’ve lost.

And that’s the truth. I will lose.

But, there’s still this: “Cancer is a medical problem, not a personal problem.” The reality of what lies in store for me at the end doesn’t change the reality of the time I have now. We don’t know how much time that will be — which is hard to understand and prepare for, a fact that I’m still struggling with incorporating into my everyday life without feeling overwhelmed by it — but we know this much: I have time, and a fair amount of it. Some number of years, even. If I’m lucky (and if anything, I’m almost always lucky), ten to fifteen. Or maybe even more, if treatment for HER-2+ breast cancer continues to evolve along its already promising avenues of development. I read once that “A good attitude cannot change the number of days you have left, but it can change the shape of those days.” Or, as I’ve been thinking lately, I want to be realistic about death, and optimistic about life.

In the last month (and it’s insane to remember my first scan that revealed suspicious spots on my right lung and liver was only a month ago), I’ve been living as normally — as positively — as I can. I’ve been climbing, riding, writing my dissertation, teaching, cooking dinner with Culinary Cheerful Boyfriend, marathoning Law & Order with my roommates, complaining about the papers I have to write. More often than not, I think I’ve been able to push cancer to the sidelines and remember that my own life — the life I am living — is far more important than the end I am moving toward. As some of the women on the metastatic breast cancer message board I frequent are fond of saying, “There’s no expiration date stamped on my foot.”

But sometimes I remember: having terminal cancer sucks. There’s no way around that, no way to make it better. No amount of positive thinking or cheerful rhetoric or even forward-moving energy can change or undo what’s coming. I know that, but sometimes I think those around me don’t know that I know that, or that I’m okay with that. When faced with the simultaneous certainties of life and death, we tend to gravitate toward life in an attempt to push death away. But those defensive mechanisms feel forced and false to me; I can’t effectively push death away. I’m not running toward it, but I’m not backing up either.

I’ve never been afraid to die, and I’m not about to start today. I consider myself lucky to be alive, for any amount of time, and so I’m pissed I’m going to die young from an ultimately painful and overpowering disease. Sometimes, I just want to say that — “Dying from cancer is going to suck” — without the immediate reactionary reminder that, in the meantime, everything’s pretty good. During my first treatment, a friend — who’s also young with stage iv — came to visit me in the infusion room, and the most relieving part of her visit was when I looked at her and said, “This fucking sucks,” and she looked at me and just said, “Yeah.” She’s also one of the most cheerful, positive people I have ever met.

There’s a crucial distinction here that lies along the overly dramatic lines of life and death; a distinction that both widens the gap between them and draws the experiences of each together. Living with terminal cancer is about two diverging ideas: living and dying. Despite the chasm that pushes those two ideas apart, I’ve found that making it through each day means remembering that both are always equally true. I will continue to live an energetic, fulfilling, happy life. And, in fewer years than I thought, I will die.

This is okay, not because it is actually okay (see: “This fucking sucks”), but because it is true. And the harsh truth of that end point throws a fine light on the other side, emphasizing the saturated energy of life. Of my life. What a terminal diagnosis has taught me is this: we can hide from death and so correspondingly hide from what our lives could be, or we can stand and stare death in the face, using the experience to more acutely realize the things we want. Or, as Dylan Thomas puts it, “Do not go gentle into that good night.”

I know my night is coming sooner than I anticipated. It’s sort of far off (in the “years, not months” way), but its approach has made clear what needs to happen during the day. I’m not done, and I probably won’t be when the day is over, but I still have until the sun sets.

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7 thoughts on “Day and Night

  1. I have been thinking a lot on this lately. The concept of your death, of a world without you in it, is unbearable, unfathomable for us. I cannot imagine coping with it. But, at the same time, if and when it does become a reality, I fully trust we will find the resources we need, and in the interim days and month and years, the resources to cope with whatever comes our way.

    Right now that stark fact is not our reality, does not hold a place in our lives. Is this denial? To a certain extent you could argue that. But it’s denial not of some ultimate reality, but of the power cancer wields in our present life, our today. Right now, today, for the immediate future, cancer holds no dominion. Right now, aside from the debilitating effects of the chemotherapy, you are healthy, fit, and strong. As Karrie pointed out when she was first diagnosed many years ago, it’s a very small spot in a very large body.

    So we live with peace, and hope, and joy where we can find it. We live in the present, and leave the future to evolve at its own pace, in its own time. We can, and will, meet it then.

  2. Hi there. Have been following your blog for a week or two after finding it through a friend, and thought I’d finally chime in with a thought (“longtime listener, first-time caller”).
    Your friends and family fall into the usual rhetoric—“You’ll beat this!”—for a host of reasons. Not least of these is the fact that this sort of “defeating breast cancer through vigilance and strength” mentality is heavily marketed by the related charities, and for many people this will be their only other experience with the disease. It’s also, I’d imagine, psychologically soothing for them to phrase it this way; while your ultimate death is a tragedy that happens to you, your friends and family are the ones who have to live with the loss (to put it crudely).
    To digress from this briefly for a scientific point, cancer has the unfortunate distinction of being the disease that will eventually afflict everyone. Unlike smallpox (which science wiped from the earth), bus accidents (avoided with luck or agoraphobia), or meteors (Bruce Willis), one can survive all other causes of death and eventually “lose” to cancer. With today’s medicine, this is a certainty.
    But we still use phrases like “Lance beat cancer” when, if he lives long enough, cancer will surely beat Lance. Why is this? Why not say “Lance forced cancer to game two”? I would argue that we use this construction because Lance is able to live his life in a way that it is not defined by its endpoint. A different victory condition, or else, a different perspective: cancer will beat everyone, but “kicking cancer’s ass” means living well in the meantime.
    Under this paradigm, you’re clearly beating cancer’s ass now—handily.
    Does this station take requests from first-time callers? You’re a PhD student who apparently climbs, writes, and rides horses. That stuff is really interesting even on its own, and I’d love to hear more about it.

  3. Kiara, I find myself feeling partially guilty when reading this blog while nursing a strong morning coffee, because you are living through this illness and I’m simply mesmerized by your account and then go off on my day…..I think of you often although we haven’t met. There is something so fresh and honest about your writing, so pure and simple yet so powerful. Keep on climbing.

  4. I just started following you. I’ve had mets for 2 years now – liver. And, so I get it, especially about how isolating it can be. There is no way any of your friends or family can truly “get it” no matter how much they want to. Mourning your own life is something that is incredibly difficult, no matter your age. There is always more you want, you will never be satisfied that you’ve had enough and having your future suddenly cut off from you is startling and very hard to manage.

    I think though, that you are on the right track. Live as normally as you can for as long as you can. There will come a time when this is not possible anymore and it can happen suddenly or slowly. (For me, after I got sepsis I became sick, when before I was okay). So, don’t just live normally now – enjoy those time living normally; notice them and appreciate them. You will miss it when it’s gone and you will wish it were back, but with a positive attitude (which I have as well) you will find other things to enjoy. I have difficulty walking now; I lose my breath. But walking is the only way to see the new flowers and birds. Life is beautiful, even when it’s short. Your path is hard but can still be rewarding and beautiful.

    The more people who deny your truth, which is that you will die early, the more alone you will feel, so try to be around people strong enough to admit it. You will get so many pep talks in the next few years that you will want to puke. The truth is, there is no cure for your cancer and you will likely not live to see one. I hope I’m wrong for both of us but accepting it helps you enjoy what’s left of your life. And, there are women who get years of NED and I hope you are one of them.

    I linked to you from my blog, Breast Cancer? But Doctor I Hate Pink. My best friend in treatment is 28, although I am in my early 50s now. She has Stage IIIC and is also in constant treatment although for different reasons: Her cancer is NED but the drugs nauseate her so she goes in for IV anti-nausea drugs. She has hope someday she will be finished and will be able to put cancer behind her – I know it’s my end. . It’s a shame that so many young woman have to deal with this, and the reason she and I became friends was partly because of our age – I am the 2nd youngest “regular” in the infusion room. Seems like cancer is for 80 year olds although nobody in my family has ever had it and we are long-lived. I hope you find cancer peers, but support groups are often afraid of Stage IV.

    *hugs* to you. I”ll be following as you go down the path none of us want to go down. Since I’m a bit ahead of you, If you have any questions, please contact me.

    • Thank you so much, ButDoctorIHatePink. I read your blog when I was first diagnosed with stage iii back in October 2010, and your perspective really helped me come to terms with having cancer. That you reached out to me now is amazing and (as awful as this is for anyone who has to experience it) I feel so touched and lucky that there are women in similar situations to mine who are also getting through each day. Thank you for your kind words and for the assurance that I am not alone. I’ll be following your journey. 🙂

  5. You know, Kiara, your blog has evolved into something very interesting to me — a post menopausal woman who has lived more years in the past than I will in the future. I’m reading an evolution of mind and thought that many of us post-the-half-century mark come to face that is far beyond your years, but not so far from my own. The realizations you are coming to are not unique to a young cancer patient, they are realizations we ALL have to come to as human beings. Unfortunately, LIFE is a terminal illness (to use the cliche), but how you LIVE your life is what is special. You keep on living your life in your special unique way, celebrate the joys that come your way and cherish the moment. You are so right – you don’t back away from death, none of us can, but you can embrace life.

    ./c

    • You nailed it, Peartree. Now celebrate that she’ll be spending many of her future alloted hours galloping and tolting across the fields on a lovely little Icelandic.

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