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.


Side Effects

With week 3 of taxol behind me, the side effects are starting to hit hard. I was expecting this — I’ve been through this before and know what chemo feels like — but it’s frustrating nonetheless. Usually the steroids (which I’m stopping next week because they make me feel a little too on edge after chemo) carry me through Saturday evening, but I woke up Saturday morning at six am with a sharp body pain and temperature fluctuation I hadn’t really felt in a couple years. Hi, taxol, nice to see you again.

Side effects are tough. They remind you, for about half the week, that you’re not healthy. They’re hard to think through because the cancer itself isn’t causing you to feel so sick — it’s the cure doing it instead. I calculated the other day that, once I stop the steroids and no longer have the energy they granted me for Thursday night through Saturday evening (or morning, as it seems, which makes me feel better about stopping them), I’ll lose about a month and a week’s worth of time to fatigue, pain, congestion, nausea. That’s if Monday’s keep ushering in post-chemo energy and health — which, I know from experience, won’t be the case for long.

But the point of this post isn’t that chemo is rough — that seems almost too obvious to write. Of course treatment for cancer sucks; you willingly poison your body with chemicals so powerful they can kill cancer faster than the cancer can kill you. I don’t pretend to be a scientist or a doctor (okay, maybe sometimes I’m tempted), but that equation makes sense to me. Chemo destroys cells that specialize in mutation, and destroying actively mutating cells requires a medication that’s incredibly potent. That’s fine.

But while the side effects themselves don’t bother me, the way they interact with my life does. One of the side effects of taxol is shortness of breath and restriction in my lungs; sometimes I feel as if someone is sitting on my chest, preventing me from breathing. This morning, while climbing at the gym, every overhang I encountered gave me trouble. Routes that I flashed the first time or should climb without difficulty suddenly required a monumental effort and exasperated the soreness in my lower body (another hallmark of taxol). I took breaks every 4 or 5 moves, leaning my head against the wall and waiting for my chest to stop heaving with tightness and pain.

Goddammit, I thought, I just want to keep climbing.

I refuse to put my life on hold for chemo, but sometimes it demands I move in slow motion. There’s almost no way around the frustration that causes. I’m getting used to the side effects again — the pain, the nausea, the fuzziness, the fatigue — as they slowly become part of my everyday life. But sometimes I have moments when I wish I were chemo free, even for a brief instant, to get through whatever it is I want to do. I’ve moved in fast forward since I was born (as my dad has often quoted my elementary school principal about my outlook on life, “If you can keep up with her, she’s a lot of fun”), and the speed treatment demands feels entirely alien. I want to keep moving quickly — why should I have to slow down?

I came across a blog the other day by a woman with breast cancer who gives voice to women on the other end of the spectrum — those who have more trouble pushing forward with active lives in the midst of treatment. While I don’t remember her words exactly, her About Me ran something like this: “We all know women like that, who do chemo and somehow manage to race mountain bikes, have a family of 10, pursue a full time fulfilling career, and in so doing make the rest of us feel bad.” I know I fall firmly into the camp of women she’s positioning herself against, but I would hope that my attitude doesn’t diminish the fact that the side effects of treatment — especially long term treatment — are hard for all of us. None of us, not even those who stare cancer in the face and refuse to blink, come out unscathed.

I think that’s where my frustration comes in. Like I said, the side effects don’t bother me. I knew they were coming and they’re well deserved (die cancer die!). And when I think carefully about it, having to step off the wall 3/4 of the way up a climb I should be able to finish isn’t too big of a deal. Where my frustration really lies, and where I think it lies for many of us with a stage IV diagnosis, is the fact that, no matter how bravely and intensely we stare cancer in the face and refuse to blink, it refuses to blink too.

I know my cancer will most likely never be gone; I know I will probably never be cancer free. I know I will die younger than I should from a disease that will ultimately break down my body and its ability to work in a manner so painful that I can’t comprehend of it until I am there. I know the time I have before that will be tainted and restricted by bouts of treatment — sometimes more so than others. For some reason, however, these things do not frighten me. Maybe it’s because I’m not there yet, but the fear of that reality has yet to set in. Instead of fear, I feel frustration or something akin to anger (which is a fairly alien emotion to me — I don’t get truly angry often). I’ve had to rearrange the way I think of time and the way I approach my life, both in the short term and the long term, and that makes me irritated. Certain aspects of my life that I assumed would be true I’ve had to give up. I’ll never have a family (to do so would be honestly irresponsible), I won’t have a normal job search, I may not have the kind of career I envisioned. That sucks.

But I also know, and have to keep reminding myself, that the time left is still mine. As much as it’s changed, I still get to own and participate in the time I have left. Sometimes, that’s hard to remember — I forget that the future isn’t all gone, that change doesn’t mean deletion — but oddly, thinking about my side effects and their inevitable effect on my life has helped. Even when I’m not healthy, even when I’m stepping back from tasks I normally complete with ease, even when I’m tired or sore or angry or just worn out, I’m still putting my energy into something that affirms that I am more than just a cancer patient. I think that’s why I’m one of those women who run out and do everything they can as energetically as they can during treatment. I need to feel that this is all side effects — that the main attraction of my life is still me and what I do with it. That life may be drastically different from what I envisioned for myself, but it can still be front and center. Cancer doesn’t have to be, even though it doesn’t blink when I stare back.

Despite the fact that cancer is probably as stubborn as I am, my energy is more present, and if I work at it, I can push illness to sidelines of my life. Because side effects are just that — on the side, in the wings, offstage — in other words, not what I need to focus on. It takes a lot of work, but I’ve decided: from now on, I’m working on relegating cancer and dying to the side.

Adventures in Barber School

Tuesday night we shaved my head.

My hair started falling out last Saturday morning. Not that much, just a few stands when I pulled. By Monday, just running my fingers through it would grab a few. Tuesday morning was the same and I figured I could wait until the weekend to take it all off. But Tuesday night, when I was climbing, I went to redo my ponytail and a small handful came out without any effort. Same thing happened a minute later.

I’m not traumatized by shaving my head. I didn’t want to hold onto something that, every time I touched it, reminded me that I was sick. I have a healthy head of very thick hair that I probably could have milked for a few weeks to come. But to do so seemed like a lie, or as if I were pretending in some superficial, pathetic way that I weren’t that sick. Or that the cancer hadn’t yet taken a toll on my body. Plus, I actually look pretty excellent bald (I was blessed with a well shaped head).

To say I wear my illness proudly wouldn’t be accurate. Pride isn’t something I feel when I think about having cancer or managing treatment. I’m often praised for my bravery or good nature in the face of crisis, but like shaving my head and going bald most of the time (I have wigs I wear for special occasions, and hats when I’m cold), the way I approach having cancer has nothing to do with pride or a misplaced sense of inner strength. Instead, I think of being diagnosed as hovering in the middle space of existence: nothing so important that it shifts who I am as a person, but nothing so minimal that I get to ignore it completely.

My primary job as a human these days is to show up at treatment. There’s no getting around that. And though I take that job very seriously, I don’t always want to do it. Right after I decided we would shave my head that night, I chose a new 5.8 warm up on. But three quarters of the way up the wall of this first climb, I came to an overhang that stressed the muscles over my implant. They’ve been hurting a lot lately, as they’re new growth and the taxol attacks growing cells first. I tried making my way across the overhang three times before the pain overwhelmed my normal calm and I panicked on the wall. I wasn’t afraid but more deeply frustrated — my job as a cancer patient was interfering with my job as a rock climber. Reliable Belayer Cheerful Boyfriend lowered me off the wall and I pushed my head into his chest, crying. I said, “I don’t want to do this anymore.”

When I was first diagnosed, before it was even official and there was still a chance I had a weird unrelated spot on my lung and a liver fungus, I sat in one of the oncology ward offices with Wonderful Oncology Nurse, Amazing Best Friend, and Worried Cheerful Boyfriend as we reviewed the preliminary results of my scans. I knew about my liver and lung mets, but when Wonderful Oncology Nurse read “lesions on the L1 section of your vertebrae,” I felt suddenly shaky. Until then, I had other possibilities to hang onto. With that moment, however, chance turned into certainty. Again, I found myself in tears, this time sobbing onto Wonderful Oncology Nurse’s scrubs. “You won’t always want to do this,” she said to me, “but we’ll be here, and we’ll make sure you still do it. Just show up.”

As I sat on the edge of my bathtub and watched the pile of hair to my right grow bigger as Tough Cheerful Boyfriend buzzed it off and Loving Supportive Roommates looked on with iPhone cameras and plenty of alcohol, I felt this weird combination of reluctance, numbness, and isolation. I had been almost eager to shave my head because keeping my hair recalled at best a farce and at worst a subtle but sharp reminder that I was sick and the solution was poison. Yet as we were shaving it, it struck me hard that this illness was real, that we were eliminating one of the last veils of normal I could duck behind in everyday life. Now, even when I teach, ride, climb, write, whatever, I’m a cancer patient.

That sounds daunting and depressing, but it’s not. My baldness isn’t endlessly overwhelming or a source of independence. It’s just baldness, just another form of beauty or appearance. In the same way, my willingness to always be a cancer patient — to always show up to the job — isn’t pride or strength or bravery either. It’s just who I am, who I am capable of being as an individual and a human being. I do nothing more or nothing less than anyone else in my position could do or has to do. I live in the middle ground of treatment and work, chemo and climbing. I am a teacher, a casual yet energetic living room dancer, a lover of ponies, a connoisseur of Massachusetts pizza, a cancer patient. None of these identities define me, but they all contribute to who I am every day.

So shaving my head isn’t so bad. It says, in some ways, “I’m sick,” but it also says “I have a neat sense of style and a well shaped head.” It says whatever I want it to say. And today, as I’m on my way to chemo in a couple hours, it says “I’m willing to be a cancer patient.” It says, loud and clear, “Here I am. I’m showing up.”

Tough Cheerful Boyfriend does an amazing job shaving my head (and wearing his Team Kiara tee shirt!)

Tough Cheerful Boyfriend does an amazing job shaving my head (and wearing his Team Kiara tee shirt!)

The Siege

As I’ve mentioned before, I climb rocks. Well, I *aspire* to climb rocks (right now, I sort of scramble over outdoor walls in fear), but in the gym I Seem To Actually Climb. For those of you who’ve climbed before (and who I can gently brag to), I’m currently pretty solid on 5.9s and working on low 5.10s. Not terribly impressive, but I’ve only been climbing since January and my goal was to start working on 5.10s at the end of the summer, so I think I’m doing alright.

I mention climbing because it gives me the opportunity to think about treatment in a more manageable way. I’ve been struggling with what words to apply to my treatment cycle this time because stage iv treatment is so unique. When I was originally diagnosed as stage iii back in October of 2010, it was almost easy to conceptualize of my treatment cycle because it was bounded. I could kick cancer’s ass because I could see the end of treatment. Now, whenever someone says to me “you’re going to kick cancer’s ass,” my immediate reaction is “well… not really.” Put simply, stage iii you can get rid of; stage iv you hold at bay.

So how does climbing help me think about this? Well, unbounded treatment is really scary when I think about it in the abstract. I’ve referenced this before, in a slightly different way: thinking about time in chunks that are too big starts to feel depressing pretty quick. The same thing happens when I think about my treatment cycles. In the largest sense, I’ll probably be on treatment forever, on and off chemo. My hair probably won’t ever be as long as it is right now. I’ll never have all of my energy back.

In the weeks leading up to my first treatment (taxol/herceptin/pertuzumab, for those of you who care), I kept thinking “this is the last time I’ll probably ever feel totally healthy.” And that scared me. It seemed horrifically unfair that I was suddenly staring down a future that looked so different and, to be blunt, so bleak. But I could only maintain that kind of thinking for so long — eventually, something had to give.

And that’s where climbing comes in.

When I was starting out, climbing 5.10s seemed literally impossible. I have this tendency to believe I never improve at anything — that however I start out at something is how it will always be. It stems from a long standing way of thinking I cling to: that believing that things will never get better is better than expecting them to improve, which could ultimately lead to disappointment. In a lot of ways, this is how I still think (and probably will always think), but this kind of thinking also depends on looking at the long term — the very long term.

Success is hard to measure in the short term, which is why this kind of thinking is not only attractive but easy to fall into and stay stuck in. The work I’m accustomed to — academic work and dressage — takes years to develop. A good dressage horse takes 5, 6 years to train; a good book takes 1 or 2 years of hard writing after research (and that’s on my timeline, which is speculative at best). But climbing is different. I don’t know if this is because it suits me or because, if you work hard, you can improve quickly. But by late January I was feeling out 5.8s; I did my first 5.9 sometime in late February. By mid April I was pretty solid on 5.9s and now I’m testing 5.10s. This improvement moves quicker than I’m accustomed to. And that change of pace has been slowly teaching me to rethink my sense of scope.

Sure, I may be in and out of treatment forever; in fact, I most likely will be. Sure, that forever isn’t as long as it should be. But I don’t have to think about it in those terms. I can think about it in the short term rhetoric my oncologist and I talk about during our meetings: taxol for three months. Then a scan. Then: we’ll see. The “we’ll see” part of that equation can be scary, but it also can be liberating. It frees me from having to imagine the long term — which, as I’ve pointed out before, is most likely pretty bleak. In the long term, I won’t kick cancer’s ass; it will kick mine. The short term, on the other hand, looks okay. I’ll be tired, but I’ll be working on my dissertation, riding, climbing; I’ll be here.

I’ll be here.

These are words — or versions of words — Optimistic Realistic Cheerful Boyfriend says to me when I’m having a particularly bad day. “You’re still here.” And that’s what climbing is like too. A couple weeks ago, we were out at Farley ledges in western Mass, near my dear alma mater. It was my first time climbing (read: scrambling) outside. I was having a rough day anyway — it was only a week or so after my diagnosis — and climbing poorly was not helping my confidence. I was horrified and not very good. I went from climbing 5.9s at the gym to barely making it over 5.6s and 7s on the rock (this is before I was informed that outdoor ratings are different than indoor). Though my feet always felt solid, I had nothing to wrap my hands around. I kept finding myself thinking “I’ll never improve at this; I’ll never get better.”

Then I got to the top of my second route. At the top of the first one, I immediately lowered, horrified of being as exposed as I was. But at the top of the second, I looked back over my shoulder at the valley lit with light below. And what struck me was not the characteristic peacefulness of this scene, but clarity: I was at the top of a silent route, staring over my shoulder, 60 feet in the air. That’s where I was right at that moment. My focus shifted, became more narrow and more precise. I was improving, and at a rate I could recognize. I was improving in the present.

The future didn’t seem less important, as it’s not less important now. But I’m beginning to learn that the present offers us as many opportunities for hope and joy as the future does. And, paradoxically, that’s why I will not kick cancer’s ass. The future is too big for this: in fact, in the future, cancer will win. But right now — in these next three months, as I show up every week in the hospital, in every moment of these next three months, I’ll do my own little steps of ass kicking. I’ll slowly gain enough ground to get to tomorrow. I will get to tomorrow.

Long term, metastatic cancer treatment is not a marathon. A marathon indicates an end point, and I hate thinking about long term and endings. Long term treatment is a siege: it’s long term and long lasting, sure, but you need to keep your eyes on the battle at hand because the current battle is all that is certain. Otherwise you forget that you may never win. After all, it’s not about winning, it’s how you play the game.

And I play this game well. I know this game.

Game on, cancer.

Strength in Numbers

The Boston Marathon is one of my favorite days of the year. And this is because it’s supposed to be a day of celebration, of joy, and of community.

This year, when the Boston Marathon ground to a halt at 2:50, what should have been — and was, to that moment — elation shifted suddenly to panic and fear. The audio from that moment is horrific; a mix of confusion, and pain, and anger surfaces soon after the explosions.

In the hours that followed, as I sat huddled around my laptop with Now Not So Cheerful Boyfriend (who grew up in Boston, has spent most of his life here, and identifies very strongly with the city) and some friends, and watched the same painful footage over and over again to a soundtrack of speculation and ambivalence, we kept coming around to same question: “Why the marathon? What statement is this?” Such excess seemed unmoored from even the most violent political activism; none of us could even guess as to why this would happen. And later, on Thursday night into Friday morning, when this terrible event continued with shootings on MIT’s campus and a stakeout across Watertown, we — and, it seems, is the media — remained baffled. The two young men who have been identified as the bombers — one now dead — were not excessively political, seemed well adjusted, and, with the exception of a couple comments about nationalism, did not seem prone to this kind of violence.

So, why?

This is, of course, the most slippery of questions. Why leads us inevitably to the idea that there must be a reason for tragedy — and, if we can weed out this reason, we can prevent the same kind of tragedy in the future. Certainly this is true in many cases, but here it seems we may never know (especially if the second bomber meets the same fate as his brother, which I in no way hope).

If I can draw the (almost inevitable and narcissistic) comparison, “why” is also a dangerous question when it comes to cancer. So often we want to locate a reason for suffering and one of the most common questions I get in regards to my cancer is “why do they think it happened?” Well, we don’t know — and that ignorance often breeds anger and frustration. Without knowledge, how do we move forward in a productive, healthy, and joyful way?

Well, here I turn again to the discussions I’ve had about the Boston Marathon events — specifically, my class’ incredibly insightful and elegant discussion on Wednesday. My students — BC undergrads in my Wild West in American Fiction elective — and I spent our Wednesday class discussing the aftermath of the bombing: its effect on our lives, the space of Boston, and our sense of safety in the city. Our conclusion, at the end of class, was this:

Rather than harboring or focusing on the anger, fear, or frustration such an event encourages, and rather than focusing on the “why” that often breeds those emotions, our most important outlet and means of expression is community. Our love for one another, our reaffirmations of the love, support, and energy in our various communities, our community activities that draw us into one another’s lives, are the best retaliations to violence and tragedy we have. A focus on our communities and how we can participate in those communities can help open our eyes to how we can help one another, especially in moments like these when we, as a whole, are fragile.

So even in the midst of the extreme sadness that orbits the city even now, keep your eyes on one another. Find joy and love and celebration in your communities, and nurture it there. It is our only hope.

Stage iv vs. The Boston Marathon

In exciting news today, my side effects from the taxol are manifesting about a week to a week and a half early! And, as Cheerful Cheerleader Boyfriend reminds me, I still climbed like an awesome person yesterday!

Because I’ve been on taxol before, my body is prepped to jump on the side effect bandwagon a little bit more enthusiastically than it did last time. This means that, while my nose is already bleeding, my body and skin already aches,  my tastebuds are already dying, and my scalp is already pretty sore (and I’ve had one treatment — a timespan that didn’t even register the chemo last time), I’m also going to lose weight more rapidly and be even more fit for climbing. In truth, I don’t have that much I can stand to lose, but if you know me, you know I will do anything for abs. Chemo might seem a little extreme, but it’s probably the most effective diet I’ve ever been on and I’m reluctant to switch to some wimpy diet plan where I have to eat less chocolate and don’t get steroids.

But side effects I’m okay with. I expect them — not only do I know they’re coming, but they mean the chemo is working, so they’re almost welcome. And, because I’ve been through this before, I know how to manage them pretty well. Morphine works really well for pain and the steroids work for energy. Even so, three months (11 more treatments) of this seems like a lot if I look at it head on. Like the diagnosis in general, I need to approach my treatment cycle one day, or one infusion, at a time. Step by step. Day by day.

Today’s also the Boston Marathon, which is one of my favorite days to be living here. Last year, we watched the marathon from BC’s main gate and arrived early and stayed late enough to see not only the elite men and women come in, but also others we knew participating — friends of ours, students of mine, and my dissertation advisor. I always love watching the runners, both because that kind of athleticism is generally amazing to see up close and because giant displays of human achievement always uplift me a great deal. I love seeing the objectives we can accomplish as humans, the lengths to which we are capable of going if we push ourselves.

This isn’t to draw a false comparison between running a marathon and having cancer (although there is a metaphor in there I use a lot — having stage iv cancer is like running a marathon in a lot of ways; though Cheerful Nerd Boyfriend informs me cancer is more like a siege because “whereas a marathon implies a defined finishing point, a siege implies that you’re looking to outlast it”). No amount of determination or fighting spirit will push me past my cancer like a runner’s determination can push them to a finish line. Lately, I’ve even been reconsidering the use of words like “survivor” or “fighter” when applied to stage iv patients, since such rhetoric silently presumes individual failure when cancer, almost always, ultimately wins. I have a lot of energy, and I am determined to live as fully and intensely as I can for the time I have left, but I know I am more than likely fighting a losing battle.

And that’s okay. I don’t watch the runners to evoke some facade of strength that, if only I could tap into, could cure my cancer. I don’t imagine that I’m the protagonist in some horrendously written Lifetime movie that would reduce my illness to some forced and superficial story of individuality. I don’t kid myself that this is a winnable battle that I only need to muster the strength to persevere. I watch the runners because each day, no matter how close to the end that day is, holds the potential for experiential joy. I watch the runners because their energy and force puts me firmly in the joy of today — the excitement and amazement of the day. I watch the runners because they make me happy.

So today I’m off to be a Marathon spectator. Tomorrow I’ll be a PhD student and climber; Wednesday I’ll be a teacher. Thursday I can be a cancer patient in the morning and a movie watcher at night (thanks Cheerful Attentive Boyfriend). If I look at each day like this — holding the potential for a number of identities, most of which can bring me joy — cancer suddenly doesn’t seem so big and bad. Sure, I always feel the effects of the taxol and will for the next three months, but while that’s playing out in the background, I’ve got better things to be.

Stepping into Treatment

Yesterday was my first round of chemo. I’m starting with taxol, herceptin (both of which I’ve done before), and perzutamab (which I’ve never done). Herceptin and perzutamab theoretically have no bad side effects, but I’ve always called taxol “Hollywood chemo” — it’s what movies represent when they represent chemo. You lose your hair, weight, appetite, skin color, and other internal bodily integrity. There’s two sides to this — I’ll look very sick, very soon, but I’ll also be super thin and muscular (thanks to climbing) during bikini season. It’s a mixed bag.

But side effects don’t really bother me. Now that I’ve started treatment, I’m beginning to feel a bit better about the journey I’m starting. I know we’re managing the cancer, and I know the side effects that are coming. I feel more solid about the process itself, even if everything around that process — and the eventuality it gestures toward — is anything but solid.

I think that’s what’s bothering me now — the uncertainty of everything else. Here’s what’s certain: I will be in and out of treatment for the rest of my life. There is a slim chance I’ll go into remission, but more than likely it will be a momentary or incomplete remission — like the first time. And I’ve accepted this, and I can live with it.

But what I’m not quite sure how to live with is this: the tenuousness of my future. The unease I never felt before but feel now about my life going forward. What shape is my career supposed to take? Can I even go on the job market — in Boston, a national search is out of the question — when I’m evidently sick, or bald, or in some stage of partial recovery? How do I explain that yes, I need special treatment, yes, I need compensation, but yes, you can still rely on me? How do I go forward productively in a relatively new relationship when everything feels anything but normal? Do I push aside the pervasive, low frequency grief or anger or sadness to try to build something happy and normal? Is that being false, or denying the truth? Is that denial? How long can I keep it up?

To be diagnosed so young means being at least partially barred from the securities of youth and energy. I have so much energy, and so much time, but that time will always now be inflected with grief and uncertainty. I am immensely happy for the time I have left, and enjoy every minute of it — there’s so much laughter, so much joy, so much happiness left in my future — but the simple fact of time and its newfound limitation shifts the way I’m thinking about that happiness. I have limited time — I need to do certain things before I’m too sick to enjoy them. And because we’re starting chemo now, because I’m already in this process and, as my oncologist admits, I’ll likely be on some kind of treatment forever (some that have bad side effects and some that don’t), there’s things that I’ll enjoy, but with caveats. I’ll be bald and on chemo for my friends’ wedding in July. This summer I’ll kayak and hike when I’m tired and out of energy. My boyfriend and I have a vacation planned for August that I’ll likely spend much of resting. I’ll rest more often than I want to when I climb, ride less aggressively. I’ll have trouble remembering all of it.

I am okay with these things — I need to be. I wish my life were more secure right now, so that entering this very insecure, very uncertain phase felt less like floating alone in the midst of a wide sea, or a barren ocean. But it’s not, and I need to find some of my own security in the middle of that uncertainty.

I think what this adds up to — though I’m not certain — is that I need to locate more stability in myself. I spoke to a friend of mine this afternoon and she confirmed for me what I know to be true — that no matter how many people I have around me, moving through this with me, I am ultimately doing this alone. It’s frightening — being in a loving, strong, consistent community and surrounded by wonderful people but knowing that, in the end, this is my journey. I love my family, friends, and boyfriend with all my heart, and I know they will always be here to support me, but so much of this process is mine alone. So much of the anger, fear, grief, anxiety, and panic that I’ve been courting these past two weeks is not something I could or even want to replicate for them, because taken at face value it is crushing.

But I can live with and process that uncertainty and its accompanying emotions somehow, even if they are painful. If nothing else, I know this — it’s my fear, my uncertainty. And I can rely on myself to be there every step of the way.