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.