Shake It Off: Love and thanks to the cast of SAA 2019

Hello friends,

I’ve just returned from a week in Washington DC where I spent a few days at the Folger Shakespeare Library followed by a few days at my all-time favorite conference, the annual meeting of the Shakespeare Association of America. I would say that it’s like Comic Con for Shakespeareans but there’s a lot less cosplay (no, we’re not a Ren Faire) and a lot more intellectually crunchy panels featuring the newest scholarship by brilliant scholars in the field. Some people in my position would, I’m sure, not be so invested in attending an academic conference that they spent the night before their first chemo treatment completing the paper in time for the participation deadline (perhaps the most on-brand thing I have ever done). They’re occasions that we often grouse about, after all: the timing is bad; the flights and hotels are expensive; the schedule is too packed; the program doesn’t have what we want on it; we have to grade/prepare lessons/do admin work when we get home. Admittedly, this is a more fun conference than many and I see a lot less general grumpiness about it than some I could name (*cough* MLA *cough*). It does share a little bit of the carnival atmosphere of Comic Con, culminating in a dance on the last night that could feel hokey (and does to some people…the conference is divided pretty sharply between dance-attenders and dance non-attenders) but which gives me the kind of warm feelings of kinship that you get from dancing at a wedding. Like: ah, nerdy as they are, this is my family.

Perhaps this trip was kind of a weird thing for someone with Stage 4 cancer to be doing. I have, potentially, precious little time in this world (even in the best case scenario it’s far less time than I’d anticipated) so why spend so much of it on work? The simple answer is that, with less time, it has become all the more important to spend it doing the things that make me feel the most like myself. And that means a trip to a rare books library where I can spend 8 hours a day combing through 400-year-old plays in search of annotations. It means doing a survey cross-indexing my list of plays against the library catalog while listening to all the Girl Talk albums in succession. It means the giddy satisfaction of closing out the library and going to happy hour with my fellow researchers. It means 10-hour conference days where I work hard and play hard and take copious notes in appreciation of my friends’ and colleagues’ fantastic minds (and maybe sneak a nap in my hotel room during the late-afternoon slump). And it means closing out the weekend with a community that has stepped up in incredible support of me in the time since I’ve made my diagnosis public in a way I did not expect and am profoundly grateful for - a fact which is the point of this post.

I found myself in the hotel bar somewhere in the neighborhood of 2am on Sunday morning, quite literally weak in the knees from so much dancing, guzzling water and keeping company with colleagues who I’ve come to call friends as we all, exhaustedly, said repeatedly “we should go to bed” and subsequently did not. There was a real last-day-of-camp vibe that infused the whole thing with preemptive nostalgia for the time–so soon!–when we would not be together in the same place. This is the thing about assembling in person only for a few days every year. There is never enough time to catch up one-on-one (or even many-on-many) among the events of the days. It’s both the best and worst part of attending a conference where your colleagues are also friends. You’re left wanting more time, more conversation, more connection. Many conversations and much of the friendship continues over various forms of social media, which I have a very deep attachment to and which has helped me make it through these years of instability and separation from people I care about. Some people regard social media or blogs (like this one) as a stand-in or poor substitute for the intimacy of real-world friendships. But for someone like me who became a teenager at the same time instant messaging apps came into existence (shoutout to AIM!) and who has had the repeated experience of developing a friendship or a friend group only to have to bid farewell to its members they are a godsend. They are a conduit for intimacy, fostering it but not replacing it.

At this conference I had the unusual and somewhat surreal experience of having people–some of whom I knew well, some of whom only in passing or from Twitter, some not at all–reach out and thank me for writing and sharing so much of myself. Some of them had been through something similar, either on their own or with a loved one. Others hadn’t but wanted me to know that my experience had affected them and that they were on my side, hoping along with me for things to get better. I was moved almost to tears several times because, in that way that happens when you write and then post into the void, I wasn’t sure anyone was listening. But they were and responded with manifold kindness. It seemed somehow symbolic of my experience with the academic profession overall. It can seem cold and empty, as we are all separated by space and time (especially the lack of it). And when we speak into it not as a professional academic but as a person the likelihood of getting any response, let alone a positive one, seems so slim.

That is, I think, why revealing so much of myself on here seemed somewhat risky to me and would to many people. We cultivate very carefully our professional selves, even in casual interactions, because the line between the personal and the professional is so blurry in academia. Often we use this fact to impute great skepticism to our readers (our colleagues); better not to show any vulnerability in case someone, some day, may want to hire you and who would want to hire a vulnerable human being? But in this case I’ve seen the other side of that grey area. I found a wealth of empathy where I did not expect it. And that as much as anything has made me want to keep working, to keep writing, to stay in this academic community. Your continued and continual support has really sustained me.

I do recognize, however, that one reason I’m able to share all this is that I have a secure job. I think I would still be posting about my experience in any case simply because it isn’t in my nature not to share thoughts on the most important thing in my life. But I also know that it’s my privilege to be able to do so, to even have the choice. And it is a choice that I have made in smaller ways in the past too. I still recall several years ago during one of my turns on the academic job market when I received an unsolicited email from someone I did not know (although we had a friend in common) informing me that my Twitter account was unprofessional and that I was likely writing myself out of a job. Of course, I cracked my knuckles and wrote a pointed reply about how I had quite literally written a dissertation on the concept of the public sphere and thought very carefully about what I wanted to put in public or not and, what’s more, that it was only for me to decide and not for him to arbitrate. (For the record, I do not consider my account “unprofessional” since it is a purely personal account from which I sometimes tweet about work-related things. Also for the record, this person wrote back with an apology.) But that fear, stoked by incidents like that, would keep many junior people (or even senior people) from publicly showing their wounds–literal and figurative–in a situation like this.

I am glad to be able to speak. I am more than glad that someone is listening. As I return home from the conference, prepared to resume chemo again on Thursday, I feel sadness and trepidation, sure, but I do also feel energized and supported, raised up by a larger community of far-flung friends, colleagues, acquaintances; people I’ve never met face-to-face and people who are an integral part of my daily life.

Friends, academics, Shakespeareans, you are a wonderful bunch. Thank you for making this trip and this conference an occasion to recharge and return to fight another day.

“You Don’t Look Sick”: Privilege and the (In)visibility of Illness

[Originally posted on CaringBridge on April 10]

Today I left the hospital as a cyborg! I was there to have a chemotherapy port implanted, making me part human part machine, so now if I write academic pieces about the “post-human” or “human-machine hybrid” I’ll be speaking from personal experience.

More significant for me, though, is that this relatively small piece of metal and plastic is the first truly visible sign of illness that I have. It makes my body legible as “sick.” Cancer is insidious for a lot of reasons, most of which can be boiled down to how good it is at hiding. Cancer cells evade the body’s natural detection and elimination system, sneaking around and amassing quietly. But also, people with cancer frequently don’t “look sick” at all. In fact, I had been looking healthier than any time in recent memory. I had finally gotten to a place of stability in my personal and professional life (after years of crisis after crisis that left me devastated) and gotten back to running and occasional yoga. I felt so much better. I had shaken much of the bone-weariness of depression and the chronic fatigue that had dogged me since my grad school years. (Still no explanation on that one, by the way, but it was serious enough that it left me with sky-high white blood cell numbers that warranted an investigation for cancer in 2016…which I did not have then.) I was feeling undeniably and pleasurably healthy!

I was not. I had stage 4 cancer the whole time I felt I was healing, improving, flourishing. It causes pretty extreme cognitive dissonance for me to think about that, as I know it did (and probably does) for many people in my life, especially those who went through much or all of the past 18 months with me. I remember saying to a friend who I’d met about 9 months prior, “I’ve had cancer the entire time you’ve known me,” and both of us doing some stunned blinking as that fact sank in. All those things I did with cancer–buying a house, meeting new people, traveling to new places, going hiking, giving papers, going swimming, playing pool, drinking in bars, losing at pub trivia–all of them done while I was unknowingly harboring this disease. It was, in a very literal sense of the term, incredible.

Truthfully, though, even since I have known about having cancer I haven’t “looked sick” at all. As I’ve continued to live my life as usual (or maybe even with a little more urgency and intensity than normal) I’ve seen people who know about my diagnosis maybe squint a little, to see if they can see a way it makes me different. From afar, it certainly does not. From closer, it also mostly doesn’t. The only time I notice any impairment, honestly, is in the slight shortness of breath that I get from the lesions in my lungs. And even that only takes me back to the walking pace of a normal human instead of a long-legged ex-New Yorker. I imagine people I see every day might go through cycles of forgetting and remembering, as I comment on what’s going on in my life.

People who don’t know about my diagnosis absolutely cannot tell that I’m sick and, with them, I face the choice between answering questions about how I’m doing honestly (“pretty well, given the circumstances, but the circumstances are terrible”) or continuing the social forms and responding without really engaging. For what it’s worth, I usually do the latter because the emotional work of telling people, over and over, about your serious illness is considerable. I may not have a choice much longer, though, as signs of my disease become more visible and more legible. (There’s another post in here about illness and politeness, which perhaps I’ll get back to later. But suffice it to say that if I owe you a thank-you note or a reply email I am very aware of it and also paralyzed with inability to do anything about it and I’m sorry.)

This is, I think, much more what women fear about losing their hair. I’ve seen it interpreted as more like vanity, and I’m a little guilty of believing that when I was first diagnosed. I thought, “I don’t care THAT much about my appearance so I won’t care about the hair thing as much.” But now that I have more context I feel like it’s more that having no hair is a marker of extreme difference from the norm of what women look like.When men are bald there’s a lot more of a chance that it’s something natural and that they would choose to wear it that way. When women even have short hair–which I have for a couple years now–it’s a little unusual. Choosing to be bald would be even more extreme so that covering up baldness with the inevitable headscarf itself reads as a sign of cancer. (Of course there are other discussions to be had here about the norms of masculinity vs. femininity…)

I’m also camouflaged by my age, which is so young for this disease that it’s not what people immediately think of. (Yet another post I could write would be about the similarity of many chemo symptoms to pregnancy and the assumptions that leads to.) Even my decision to dye my hair purple (which has now mostly washed out, making me a bleach blonde on top with purple underneath) reads purely as a fashion choice. And there’s even a tiny chance that even if I go bald people will think of that as fashion too. Because another way in which I don’t read as “sick” has to do with the privilege I’ve always enjoyed from the “halo effect”–being tall and having naturally good bone structure, thick hair, and just generally “good genes” (until they gave me cancer!). If you do have a look like that which lets you look “high fashion” it’s far more plausible that you might choose to wear various hair colors, or a series of wigs, or be totally bald just to experiment with your looks than if you don’t. What’s more, pretty people, in general, don’t fit our concept of illness. It’s not just that we don’t think sick people generally look “pretty”, but that we tend to assume pretty people are also healthy. So I’ve been riding that wave of privilege too. But it’s all about to change. And while I’m a little ashamed at how worried I am about not reading as “pretty” to a general public (it’s hard to give up privileges), I’m also interested to see how my experience changes as I lose some of those standard beauty hallmarks.

This port I have is small - about the size of a quarter - and it sits just below my collarbone. A catheter runs up from it into a vein in my neck. It is not easily concealed by most regular outfits, even though it certainly doesn’t draw attention to itself. I asked the surgeon today whether it would be visible to and she said that, “since you’re so skinny,” it absolutely would. She also told me she was taking extra time with the sutures since “you have such beautiful skin that I want to minimize the scarring.” The nurses wheeling me into the OR commented on how long my legs were, how great my hair looked. They were being nice to me because I am in a tough position, certainly, and it is comforting. I’m sure they say kind things to whoever they are caring for. But probably not those things.

Even here, there is privilege. I’m intrigued, though a little intimidated, by the ways in which the treatment process will necessitate that I rethink “beauty” for myself. I’ve been able to more or less meet the basic cultural standards without trying basically my whole life. That’s not a brag - that’s my good luck. And please don’t get me wrong: I have certainly have had my own share of insecurities and gone through phases of truly hating my body and my appearance. (The way we feel about ourselves and how we look is seldom logical or altered by observable facts or even external validation.) But now I have a whole series of changes facing my body that make me realize how very comfortable in it I have been and how much of it I have taken for granted, both in its capabilities and in its appearance.

It will be a difficult part of this process. And although I feel trepidation I do also somewhat look forward to the ways I will be forced to re-conceive of my body–of what it is and what it can do. The past few days had beautiful weather here so I allowed myself to go running. I had worried that this was something that, while having chemo, I should not do. But thinking about what I would ask of my body in the coming months made me decide that I should think of it as an ally; that we should work together to expel this invader. To do that, I needed to work with it to be strong, not treat the whole body itself as either an enemy or a passive vehicle. I’m not allowed to run for another week thanks to the surgery, but I’ll be doing what I can.

As academics, we often forget them or regard them as a hindrance. More than once, I’ve wished and heard others wish to be a “brain in a box.” My friends: no. Do not do this. Our bodies are incredible, truly. Give them some range and let’s see what they can do.

That Girl is Poison: I’m a Cancer Patient at Last

[This was originally posted on CaringBridge on April 3]

Hi all,

I’ve been pretty absent on the updates front because, well, there hasn’t been very much to update you on until now. The headline is that yesterday I had my first chemotherapy session so I can finally, finally begin to kill off these cancer cells!! The treatment ended up being IV chemo with a different agent than the one initially prescribed (which was capecitabine): paclitaxel. It has a different menu of side effects and, I’m sorry to report, I will no longer be set up to lose my fingerprints and begin a life of crime. (Although maybe that’s JUST what I would say if I were about to embark on a life of crime?)

It’s more time-intensive, since I’ll be going for half a day at the hospital every week for 3 weeks (and then one week of to let toxicity reduce). I had it today and so far haven’t had any adverse reactions except fatigue, headache, and dry mouth. So…kind of like a hangover? This is an agent that builds up, though, so this week days 3 and 4 (Thursday and Friday) are likely to be worse. The later weeks are too, which makes sense from a cumulative drug. Why the change? Well, once I learned that my PDL1 negativity excluded me from the clinical trial I needed to get set up with an oncologist here in Princeton. My Boston doctor, who I liked so much, will still be supervising big-picture treatment plans, but all the treatment and assessment will be under the care of my person here. The two of them disagreed about which agent to start me on–the rationale for the first being that it was minimally invasive, the rationale for the second being that it’s the standard treatment and would make me eligible for more future clinical trials. You can see why we made our conclusion!

It’s more than a little frustrating if I think too hard about the fact that today, nearly 9 weeks after my diagnosis, I ended up doing exactly what they would first have suggested exactly where I would have started it. But the confidence in it as the right choice and the kind of informed decisions I was able to make because of the hard work we all did are worth that they call “peace of mind.”

It let me do a couple other things, too, including occupy a liminal space between being diagnosed with cancer and being a “cancer patient.” To me the second term was a label implying something much more active–someone had stuck me with a needle, given me a pill, sent my cancer cells running for cover from a destructive agent–while with the former I was “just” running around to different hospitals and imaging centers, including ones in New York and Boston, changing into hospital gowns, drinking contrast liquids, being stuck full of IVs, and run through tubes for various amounts of time. Now, why I thought that was “easier” or “didn’t count” as “treatment” is interesting, and probably something I’ll return to, but I can promise you that it had to do with the kind of irrevocable change that it I felt it would make the be treated for cancer instead of simply finding out facts about it. The latter was an investigation, a fact-finding mission like any good general would perform before a plan of attack. The first made me a strategist about my own body. The second made it subsume me. (Or, that’s what I worry will happen.)

When I teach Milton’s Paradise Lost (secretly my favorite classroom text even though I’m a Shakespearean) I talk about the differences in the poem that are fundamental, unbridgeable, and sometimes even inexplicable to the characters. Mostly notably, differences between fallen and unfallen (most beautifully and movingly in the scene where Eve has fallen but Adam hasn’t) and the difference between Creator and created (which is one of the reasons God isn’t a sympathetic character…how could you sympathize when you’re so different?). The difference, to me, between “cancer patient” and “normal person with diagnosis” was one of these. And now I’ve crossed it. And although it’s frightening, as will be every step where I display a new signal of my status to the world (hair loss, fatigue, not being able to be in crowded spaces), it is also a relief. I can say it and I can be it.

So here I am, in the world, proudly being a cancer patient, trying to show myself (including my face) on social media just as unhealthily often as I did in “normal” life. Because I don’t actually want the divide between “normal"and "cancer patient” to be as stark as it felt it was or as stark as those lines in Paradise Lost. This is going to be the hardest thing I have EVER done–harder than getting a PhD, harder than getting divorced, harder than finding an academic job–but is also the most crucial and therefore the biggest part of who I am….for a while. But it will neither always be the most salient fact about me nor ever be the extent of who I am. And I don’t want any of us to forget that.

Of course I envy people who do not have to be cancer patients. No one would willingly choose this. I feel worried and protective of them too, though, because they might not know that the world can come out of nowhere and throw them for a loop; that very bad things can happen for no reason. And so I want to talk to them about it anyway, not to tell them how lucky they are but so that I let them in close to this, the most important fact about me right now. I am chosen. But I am not alone.

Now: if any of you thought that was a setup for me to talk about how I’m about to rewatch Buffy and you should all join me…all I can say yes, yes, you’re absolutely right. It’s a show that has already helped me through the hardest of times on more than one occasion. It has to do with self-definition and self-assertion; with struggling with unfair burdens but finding support and solace in friendships; with trying to live a “normal” life with a daily fight for your life (and the continued existence of the world, which luckily I don’t have to take charge of) in the background. It’s perfect for me right now and if you’d like to explore and read about it with me I’ll be sharing details soon about the logistics.

For tonight, though, take a sec to mark this transition with me. I’m a cancer patient. And, as this initial dose works its way through my body, we can say that that girl is poison. And cancer cells had better watch out.

Thoughts on “Progress” and a Treatment Plan

[I’m archiving this, originally posted on CaringBridge on March 20th.]

Hello friends,

Although it’s late, I wanted to let you know that I did at last hear about the PDL1 results and, unfortunately, I don’t have the protein. This means no clinical trial and no new FDA-approved combination therapy. It puts me right, smack back where I was 7 weeks ago when I was first diagnosed: preparing to get single-agent chemo. The difference, though, is that at least now I have every confidence that this is the best option, that I have done everything possible and explored every angle. And that security is worth a lot.

In my quest to shoot the moon on test results, I also found out from genetic testing that I don’t have any germline mutations (the heritable ones like BRCA), knocking out some other known treatment options. What I have truly is my own genetic mutation, a ticking time bomb that went off and proliferated itself all over very rapidly. Intellectually, I’m fascinated by how unusual it is. Emotionally, I’m terrified because this cancer has been so unlikely, so weird, so uncooperative so far that I feel irrationally sure that it will not respond to treatment. I have no rational reason to believe this, of course. It’s just fear. I’m very afraid of where things will go from here.

One quirk of cancer discussions is that when the disease worsens–moves someplace else in your body or grows instead of shrinks in a tumor–they call it “progressing.” Since “progress” is usually such a positive term I have to pause and correct my expectations every time I hear it. And that change in subject (it’s the disease that is progressing, not me) and the accompanying confusion, seems so appropriate to me for the way that cancer can take over who I am, how it can have all the agency and leave me entirely passive (as a body to make progress through…or not, hopefully). But I’m still here and I am changing (if not “progressing”) quite a bit myself.

There is a broader risk that the question doctors must ask–is the cancer progressing or is it not?–somehow replaces the question of what’s happening with me as a person. If progress is the thing to be stopped what does that mean about how I’m supposed to grow, change, and understand myself as these weeks go by? I can’t halt my own development or send myself back to a time before I knew I had cancer. I ought not to conflate all my worth or “progress” on whether a chemotherapy agent is successful in killing rogue cells. So I do want to take stock of my own development separately, and to track the shift in the way I think about things, which I’ll spend some time on here doing.

It is a cliche (and a hashtag) to say that I’m “more than cancer” and as a phrase it has always seemed faintly ridiculous to me because of course people are more than their diagnosis–why is that even something that needs to be said?! But as the disease edges out other things in my life I suppose it will be harder to keep that distinction, especially as cancer finds its way into my life in new and varied ways. I’ve already been surprised at the bonds it can forge from unexpected places –an unanticipated good thing to come out of a horrible situation–and gratified by the way it’s brought me closer to many of the wonderful people in my life. I know that it will also continue to change the character of my emotions and relationships in ways I can’t predict.

The unpredictability of it all–of the progress the disease might make or that I might make–is what keeps me in a constant state of fear and anxiety. But at least the uncertainty of treatment is past. I’ll be starting next week, once the approval comes through on an oral chemotherapy agent (capecitabine), which was described to me as “relatively tolerable”… even though one website I found listed “loss of fingerprints” under “more common” symptoms.

So, perhaps my own progress will be into a life of crime now that I will, apparently, be able to avoid detection!

Thank you for being here with me and for all the support and affirmation you are sending. I see it all and it always helps.

Much love.

How do I get an “A” in Cancer?: Illness as an Overachiever

[I’m archiving this, originally posted on CaringBridge on March 14th]

Today I heard a loud, resounding nothing more on the PDL1 protein test even though it’s been over a week since the tissue sample was sent off for what is, as I understand, a quick test to do. I left a message for my doctor at MSK who called to nudge the pathologist again and…that’s it! There’s nothing else to do! I will continue to wait, a process that’s made its way out of “anxious tension” and into “close to unbearable.” It’s been 7 weeks tomorrow since I heard my diagnosis, 3 months since I first became concerned about the tumor (although admittedly waiting until after my Christmas travels to test it seemed reasonable when no one suspected it was cancer).

I can now feel pain from the tumors all the time. (Or rather, I feel the pain of them pressing on nerves.) It’s worst with the largest one–the original breast tumor that is about the size of an egg and palpably, measurably growing between doctors’ visits. I had minor shortness of breath for the first time today. Everyone agrees that this is an especially aggressive cancer given that it took only a few months to metastasize and is measurably growing all the time. Despite this, I’ve had to wait weeks for appointments for tests, 10-14 business days for results, and been faced with a medical system what won’t even schedule necessary appointments until conclusive test results (still cancer!) are received from others, meaning the time really mounts up. (This isn’t even touching on insurance questions.) I said in my previous post that I always imagined a cancer diagnosis would be treated like an emergency, maybe not with sirens but with a red tag on your file that says “urgent” and bumps you up the queue somehow. But it turns out that having cancer doesn’t actually make you that special, at least not to people who deal with it all the time.

I imagine this fills many of you with rage and, oh, me too!!! So. Much. Rage. And, especially if you’re a parent, you can imagine how my parents are feeling. But it’s hard to know where to direct that rage. I know that doctors are massively overworked and that, what’s more, doctors and nurses both have to maintain a certain distance from their job, and by extension their patients, in order to avoid compassion fatigue. Like Shirley MacLaine I want to burst into the pathology department–where doubtless they are all just about to run that protein assay–and scream at them that I can’t start chemo until they do and all I need is this one result to be able to stop this disease from growing and spreading throughout my body and they are not doing it fast enough dammit. It’s probably for that reason that there are so many layers of office staff to communicate through, so many people to just say “we don’t know yet.” And that is what they say. (For what it’s worth, I feel that MSK may be more susceptible to this than Dana-Farber, where they have clearly spent a lot of time and money focusing on the patients’ experience and wellbeing.)

So I’m stuck, waiting with this displaced rage and thrumming pain and constant anxiety. And I feel, of all things, guilty that I haven’t started chemo yet. When people reach out to offer sympathy or to inquire how things are going–both meant entirely as expressions of love and kindness–my first impulse is to apologize for being so behind! Perhaps this is symptomatic of being the perpetual straight-A student; I’m never behind on anything…how could I be behind when it counts for so much?

I was making this type of joke even before I knew the full extent of my bad news. “I’m usually so good at tests…how can I be doing so badly on all these?” “I’ve never been just average in my entire life…no wonder this is all so statistically unlikely.” “I’ve always hit developmental milestones early; this is just another instance of it.” And, as I said in my last post, “You have to read the fine print when you wish to be exceptional.”

Now, obviously humor is an important coping mechanism for me. For one thing, it’s absurd–absolutely ABSURD–that this should be something I have to go through. So I have to find ways to laugh at it. Humor is also a pretty big part of who I am so continuing to make jokes is also a way of holding on to my sense of self. But these are very particular jokes and they’re all about how I’m a high achiever and will, therefore, CRUSH THIS just like every other challenge in my life. But cancer isn’t a test, a college application, a dissertation, a performance review. And although it may help me feel strong to think of all the other things I’ve come through (and it does) there’s also a danger that I’ll start to feel that I’m “failing” if I’m not “achieving” enough with my cancer treatment. I have already fallen into this trap, blaming myself for the triple-negative status, the lack of androgen receptors, as though if I’d studied harder they would have been there. And that’s just plain wrong.

The response my body has, or doesn’t, to various drugs isn’t a thing I can control. My role is to work with my body to give it what it needs and, moreover, to endure. Enduring is what I actually need to succeed at–and be acknowledged for–and that may not look very much like (my) traditional idea of “success.” Success, to me, is making progress: doing something, producing something, being active. And a lot of my treatment is going to look like the opposite of that. I will sit around and let my body fight an invisible war. I will not be able to write or work to the same level as usual. But if I am around, whether I’m improving or not, that is a success. Because that is enduring.

And I’m enduring now. 7 weeks of waiting, knowing that you have cancer and that it is growing and spreading each day that passes, is enough to send many people into a meltdown. But I’ve continued to live my normal life as much as possible, continuing to work and socialize as usual (or even more, in the latter case, since I don’t know that I’ll have energy for it later). I don’t talk about my disease all the time, mainly because I don’t want to. (And also because I worry about becoming burdensome to friends but that’s a whole other post.)

I have often felt that I haven’t been “earning” the sympathy and good will that has been coming my way simply because I haven’t yet been hooked up to an IV. To me, that physical act is what’s brave because that’s progress. That’s success. But I’d like to try to change that idea–with your help–and to see enduring, even during times of less physical distress, as also being brave and also being worth remarking on, even celebrating.

I hope to have more news to share with you soon. But, until then, I endure.

Hwæt: I’m Waging a Campaign

Hwæt. We Gardena in geardagum,
þeodcyninga, þrym gefrunon,
hu ða æþelingas ellen fremedon.
So. The Spear-Danes in days gone by
and the kings who ruled them had courage and greatness.
We have heard of those princes’ heroic campaigns.
(Beowulf, trans. Seamus Heaney)

[I’m archiving this, from March 11th on CaringBridge]

Hello friends,

This is an introduction and update on how things are going with my breast cancer. I’ll do some cross-posting, but most updates will be on CaringBridge. Thanks for all the good wishes and the gentle hellos and the positivity. It has been sustaining and I am lucky in my friends and family here. 💜💜💜

(Author’s note! This is a long post with a fair bit of technical stuff that I find fascinating but don’t expect you to. It’s just hard to know how to catch you all up without going into detail but, if you like, feel free to skip to the last couple paragraphs.)

If you’re here that means you already know many of the basic info, which is that about 6 weeks ago I was diagnosed with triple-negative, metastatic breast cancer. It’s pretty nasty and aggressive and moved quickly from a large tumor in my left breast to my axillary lymph node to my lungs to the soft tissue next to my spine (with probable bone marrow involvement). It’s probably about 6-9 months old. I wasn’t looking for it since, at 34 with zero family history, I wasn’t even old enough for screenings. But genetic mutations come from somewhere and it looks like I am the mutation.

Is there good news? Not much. (Not yet.) The tiniest bit is that more aggressive cancers tend also to be more responsive to treatment. The fact that it’s triple-negative breast cancer (TNBC) means that the tumor is negative for the three types of receptors that can be used for additional therapies: progesterone, estrogen, and HER2. (A second test actually put my ER number at 20%…which sounds a little like me in general: although I seem very negative at second glance you’ll see that I’m about 20% positive.) It’s also negative for androgen. This means that the only potential kind of supplementary therapy that might help along with chemotherapy would be immunotherapy. I’m not a candidate for either surgery or radiation since the spread of the cancer is so pervasive and those are highly localized.

I haven’t started treatment yet. For these past weeks I’ve been in a really difficult phase of undergoing a lot of tests to determine the character, extent, and location of the cancer. This was a surprise to me (and to my parents, who came out to NJ immediately and who have been living with me throughout this process). I sort of imagined that when you got the cancer diagnosis–which I did on January 24th at 11am when I was sitting in my office filling out a performance evaluation for my job at Princeton–they’d rush you off to an emergency room where they’d start treatment immediately. I definitely didn’t anticipate having to schedule (a challenge in and of itself) and undergo so many tests and to have to wait, terrified, for each series of events. So far, this has been the hardest and worst part.

Being whisked off is more like what happens if your cancer is localized in the breast and associated lymph node. The big first question was whether the cancer was metastatic or not, which they found out with a CT scan that showed it, first, in my lungs. This was maybe the worst news of the whole thing because it meant that radical options to contain it (mastectomy, radiation) were out and that we had to do a bunch more investigating to figure out where the cells had hidden. There was a worry about my liver which showed a large mass that had been there since 2016 when I’d actually been tested for cancer–thanks to chronic fatigue and consistently elevated white blood cell counts–and come up clean. (Luckily the consensus is that the liver mass is benign since it “grew” only .7cm in 2 years, a possible measurement error.) This left the bone scan, which did show the tracer being absorbed, which led in turn to MRIs and a biopsy to confirm metastasis.

Every time I got a new result I learned that you really have to read the fine print when you wish to be exceptional. All of this is so statistically unlikely…and yet it’s true.

All-in-all I had two biopsies of three tumors (breast, lymph node, soft tissue next to the spine), two mammograms, two CT scans, and three MRIs. This is in addition to office visits and blood work. I began working with a medical oncologist at Memorial Sloan Kettering (MSK) in Manhattan which brought me back to the city more times than since I left after college. It was looking like the only possible treatment option was single-agent chemo. Most clinical trials for TNBC require that you have been treated first. (I have “de novo” metastatic disease, meaning it had already spread when they first discovered it rather than that it was treated locally but spread anyway.) Others require hormonal receptor positivity. The few I was eligible for were often not enrolling.

However, thanks to the tireless research efforts of my dad, we found out about a clinical trial at the Dana-Farber clinic in Boston that I am potentially eligible to join. It’s testing an immunotherapy agent that has already proved effective with TNBC with one chemo agent with a different one. (It actually just got approved by the FDA.) The only trick is that the way the immuno agent works requires that you have a specific protein (PDL1) to really see results. Essentially, one way cancer cells sneak around is switching off your immune system so it can’t “see” that they are invaders. The turning off of the immune switch happens with a protein bond involving PDL1; the immuno agent being tested blocks that bond so that the “lights” stay on and the cells can’t sneak around as easily. Clever! But if I don’t have the protein it’s not clear that either being in the trial or getting the now-FDA-approved treatment will benefit me more than single-agent therapy.

So that’s the test it’s all depending on right now. I should hear in the next couple days. If you want to send positive vibes and wishes and make sacrifices to your god(s) of choice, do it for PDL1 positivity. I feel discouraged, since I’ve been negative for everything so far, but these are all independent events.

I am also waiting for genetic testing to see if this is a germline mutation–like BRCA–that I inherited. This might affect future treatment and, if I did have one, could be good news because BRCA1 and BRCA2 are very heavily researched…in fact, when I worked in breast cancer research at Wash U Med School I was working with the BRCA lines. (For those who don’t know, I started college wanting to go to med school–or at least get a PhD in genetics–so I spent 3 summers between age 16 and 19 studying breast cancer. It’s equipped me well to have these discussions, though I certainly imagined being the doctor rather than the patient.)

There are three treatment options that I will (hopefully, hopefully) finalize soon.

1. I will have the PDL1 protein and will enroll in the clinical trial at Dana-Farber. This will require traveling to Boston every 3 weeks for intensive assessment and new rounds of chemo. The agent involved will make regular life a little rougher since it’s by IV and only every 3 weeks. (And I might be in the control group, in which case I’d only be getting the chemo agent. I will, however, know which group I’m in.)
2. I will have the PDL1 protein and will receive the now-FDA-approved immunotherapy/chemo combination in Princeton with a local doctor and Dana-Farber only doing big-picture stuff.
3. I will not have the PDL1 protein and will receive single-agent chemo in Princeton, probably orally (twice a day) which is less intensively bad and more low-grade bad all the time. (There is, I guess, a kind of 3b. in which I decide to enroll in the trial even if I don’t have PDL1 but it seems less likely.)

So, if you are keeping track of the big decisions that will allow me to actually, finally, begin actively fighting against this that’s the last one. I appreciate all the notes that you’ve been sending so far. I get “message fatigue” but I see all of them and, in fact, have been saving all of them to look back on when things get even harder. So if you’d like to leave love and encouragement here too please know that I will see it and it will be helpful. I’m very unfortunate in this but incredibly fortunate in the number of people I have out there pulling for me and offering support.

Love to you all.

What’s With the Blog Name?

When I was accepted to Columbia in the spring of 2002 we received, with our welcome packets, a copy of Homer’s Iliad. It’s a common practice at many universities for incoming students to have a shared piece of reading to frame their first-year experience and to provide a ready topics of conversation. At Columbia, this was also a part of the college’s Core Curriculum, a rigorous series of courses required of all undergrads that emphasize the value of humanistic study. (The classes are themed accordingly: Lit Hum, Art Hum, Music Hum, and Contemporary Civilization, to name a few.) 

I don’t know if the text of choice was always The Iliad or if they had chosen it specifically for us because we were the first post-9/11 class to enter Columbia but it certainly felt like a timely selection as we watched our country spin headlong into its own wars. Even those of us who weren't New Yorkers were shellshocked. (Though there were a lot of native New Yorkers among us, including the friend who would become my long-term boyfriend, who had witnessed the event, lost friends and family, and literally breathed the dust of 9/11 if they went to school below 14th street.) I'm not sure, then, if our hardness was a defensive response or not. Columbia has always had a bit of a reputation as an anti-social and lonely place. It is. (I generalize wildly, of course.) As students we were many things: nerdy, sincere, hardworking, intensely capable, hyper-articulate, ostentatiously witty. But we were not very empathetic. It was an environment (and, again, this was exacerbated by being in an immediately post-9/11 New York) where emotion and vulnerability seemed like weakness.

And yet, The Iliad all hinges on emotion. There is one of the most moving scenes of empathy in any piece of literature. I recall reading it–not for the first time, since I had taken a “Great Books” course at my high school–and sobbing freely, perched on my dorm single (lofted to create more space) and knowing that for me studying literature was never going to be about anything else but emotion. That’s not fashionable, in a discipline that so often adopts a defensive posture about its own rigor (often in response to institutional threats). But it was always true. I could analyze it and turn it to the ends of argument but I was there to feel.

The scene I’m talking about is when King Priam, following the death of his son Hector and Achilles’s mistreatment of the body, comes to Achilles’s tent to plead with him to return it. (For those who don’t know he pierced the feet and tied Hector to his chariot than dragged him around the walls of Troy b/c YIKES he mad about Patroclus.) Now, Priam is a king, he’s actually the king since he’s so old and venerable, so the things he does–kneeling, pleading, weeping–are simply not done by someone like him. He goes to Achilles as a wretched, simple human (what Shakespeare would later call "unaccommoated man"). And Achilles cannot help but respond as the same: 

So he spoke, and stirred in the other a passion of grieving
for his own father. He took the old man’s hand and pushed him
gently away, and the two remembered, as Priam sat huddled
at the feet of Achilleus and wept close for manslaughtering Hektor
and Achilleus wept now for his own father, now again
for Patroklos. The sound of their mourning moved in the house. Then
when great Achilleus had taken full satisfaction in sorrow
and the passion for it had gone from his mind and body, thereafter
he rose from his chair, and took the old man by the hand, and set him
on his feet again, in pity for the grey head and the grey beard,
and spoke to him and addressed him in winged words: “Ah, unlucky,
surely you have had much evil to endure in your spirit.” (24.508-518)

They speak the universal language of human beings here: grief. They weep as fathers and sons and lovers because that’s honestly the only constant in our small human lives.

So here I am, recording my grief, with the hope that at least, by being together, we can get through the evil I have to endure.

I actually thought that the blog title was a quotation–and a beautiful line of poetry–but nowhere can I find a translation that reads, “Pitiless Achilles wept.” But I still cannot think of a line that feels more appropriate to record the thoughts of someone who has to be both a warrior (brave, fierce, pitiless) and a frightened, vulnerable person. So that’s the blog. That, and probably rants and TV commentary. Thank you for being here with me.