2020 Can Take My Hair, but Not My Hope

My hair started falling out on election night. 

I thought at first it might be the anxiety, that I was literally pulling my hair out with worry over numbers I already knew were not going to be definitive before the night wore into morning but which I stayed up until 3:30am watching anyway. I tweeted rapidly, reassuring my jittery timeline that not only had we all known that the night would bring no results but that we had even expected Trump to lead in key states because of the greater number of mail-in ballots from urban areas that would largely count for Biden. We knew. We all knew. But we were all terrified, flashing back to 2016 and already dreading another four years of living life on high alert, in constant survival mode.

I posted a selfie with a tweet that read, "Could be the last presidential election I vote in (blah blah stage 4 cancer blah blah) and I wish it were better and clearer than this but it's a crucial privilege to have voted. Remember, whatever the outcome, the last thing they can take from you is your hope."

To me that last sentence has been a mantra for these years and for my treatment. I have consistently refused, despite overwhelmingly terrible odds, to lose hope. The story of Pandora's Box tells us that the very last thing left inside was Hope--that even once all the demons were out in the world there was that tiny, feathered creature left to hang on to. It hasn't been easy, but I am one of the most stubborn people you will ever meet (and if you doubt this just ask anyone who's ever fought me on anything!) and it has turned out to be a saving grace rather than an irritating personality trait. Feeling like the world was trying to take my hope away made me angry. And when I get angry I will fight back. 

I know I'm not alone in feeling like we entered some kind of alternate nightmare timeline on election night 2016. To that point, despite periods of immense personal difficulty, nothing truly terrible had happened to me. Then, in short order, my marriage ended and I was diagnosed with and began being treated for a terminal illness, all against the backdrop of a regime so deliberately hateful that it was truly incomprehensible to me. Then, a global pandemic and national crisis swept away the small consolations I'd found in my new life with cancer. The temptation to feel hopeless was strong and I struggled with it, particularly in the isolation of quarantine. I'm struggling with it now, facing a winter of further lockdowns, social isolation, continued chemo, and the added indignity (and chilliness!) of not having any hair. But somehow the coincidence of my hair loss with election night seemed like a good omen for the future, if a sad thing for the present.

I heard the news that they had called Pennsylvania for Biden at a peaceful Airbnb in the Catskills after stepping out of a shower where lost hair in handfuls. It felt oddly like a sacrifice I had made personally. I joked about this with friends on the text chains that lit up and that (despite my promise to myself and my writing partner that we'd "go off the grid") I responded to immediately. Instant replies, with emojis and GIFs, participated in the fiction: "Thank you for your service!!!"; "We ALL appreciate your sacrifice!"; "Who among us would NOT give up their hair for no more Trump?". The feeling was real for me, though. It was as though the good news demanded some kind of karmic offering. You never get something for nothing, I thought, and really it was a small price to pay.

The rest of the weekend passed too quickly, with absorption in the novel I plan (madly, given that I also work full-time) to work on for "National Novel Writing Month" (NaNoWriMo), walks in the unseasonably warm woods, and nighttime drinks on the back deck under the stars, watching my hair blow off in fine strands and drift through the sodium porch light. My friend and I read tarot and both our layouts contained The Tower, the card for new beginnings from total annihilation, the moment of destruction in which (as the novel's title says) everything is illuminated. "This might sound dumb," he said, "but maybe yours is about your hair." It did not sound dumb.

There is probably no more iconic visual shorthand for cancer than hair loss. It happens because chemo agents target fast-proliferating cells, which tend to inhabit things that grow rapidly by nature (hair, fingernails), or that we need to replenish often (cells in the gut), as well as out-of-control cancer cells. But not all cancer treatments, not even all chemotherapies, cause hair loss. In my 20 months of being treated for cancer and my three previous treatments (four, if you count the surgery I had) nothing had yet affected my hair beyond a bit of thinning. This despite the fact that my first-ever treatment (Taxol) was widely known to cause hair loss for "everyone." I had been fortunate with this particular side effect in a narrow way that I have absolutely not been on a broader scale. "Maybe," I had let myself think, "I can have this one thing." The odds were in my favor too; only 38% of people in clinical trials being treated with Saci lost their hair. I liked the odds of being in the 62% who didn't. But--as we all felt deep in our gut while they counted votes in battleground states--odds aren't everything.

I had come to treat the "strength" of my hair as a kind of relative consolation (though as with everything cancer "strength," "weakness," and the rhetoric of battle have nothing to do with outcomes). I treasured still having it, not just out of vanity (though I have always loved my hair whatever length, style, or color it has been) but because it allowed me to pass among regular people as one of them. I had no visible markers of the illness that is killing me, concealed as first the tumor and then the scars were by my clothing. "You look wonderful," people would tell me, even when I suffered from stress fractures from nothing more than running or sneezing; muscle spasms in my shoulder and nerve death in my fingertips; nausea that I swallowed with swigs from my water bottle that just made me look all the more like a hydration-conscious athlete; and profound, constant, and debilitating fatigue. Invisible illness had its own perils but I would take them--take all of them at once if necessary!--if only I could keep my hair and look normal.

It was not to be. A part of me had known this, since a lifetime with metastatic cancer means a lifetime of treatments a solid proportion of which result in hair loss. But I had hoped. And I had liked the odds. 

The hardest thing for me is having to give up this particular consolation before knowing whether or not my new treatment is also working on my cancer. Unfortunately, there really isn't a correlation between side effects like hair loss and effectiveness of treatment. If it is working then I will feel that--like the election to which I felt I had karmically contributed--it was all completely worth it. Yet, even in this best case scenario, there's a new reality for me which is that while I am on this treatment I will stay bald. When you are a chronic patient you hope for a treatment that will work well with manageable side effects. And if this treatment works--and if the other side effects are as ok-ish as they are now--then I will remain on it. 

It's that future that I am furious about more than anything else. I want to continue to live my life, of course, but I don't want to have to do it bald! In part that is because I don't want to register to people constantly as an archetypal "cancer patient" when I know that I am so much more. It is also in part because I don't want to think of myself as being ill, and living every day having to disguise my absent hair will make that all the tougher. I have already noticed that I feel, physically, as though I am sicker because of my constantly shedding hair. How could I not, in some ways, when every move I make and every glance at myself (including in endless Zoom windows) shows me this highly visible change? 

For that reason, I'm shaving my remaining hair tomorrow (Wednesday). It's a way to feel less disempowered--less like hair loss is happening to me--and wrest control of the situation back. I will try to find agreeable things about it: wigs, scarves, cozy caps, bright lipstick, statement earrings, and a general punk/Mad Max vibe that is appropriate to 2020. But I don't want anyone to think for a second that I find this agreeable, or even acceptable, or that I don't mind. I mind a whole hell of a lot. My hair was my consolation prize, my camouflage, my vanity, my folly, and my battle cry. 

I dyed it purple when I was first diagnosed because I knew (or thought I knew) that I would be losing it soon. I didn't, and I came to cherish it as a symbol of my boldness in the face of circumstances trying to oppress me, to make me shrink, to tempt me to become invisible. I refused and used it to "shout" all the louder in response. Because of what it came to mean to me, I'm nearly as sad about losing the purple as I am about losing the hair itself. It both symbolized the weight I was carrying and also that I would not let that weight grind me down. It was my act of resistance and my sign resilience all at once.

I sent a text to my friends, explaining this and offering, as an idea, that I could "pass the purple" to them in some way, small or large. It would feel more like handing off a torch or a weight (or the One Ring) than anyone shaving their head in solidarity. (After all, if they did that it would just remind me as I watched theirs grow back that, in fact, our positions were very different.) You're welcome to do it if you'd like too, internet friends, with temporary or permanent dye or a wig or a headband or one of those terrible 90s hairwraps or whatever. But I don't require that anyone do it because I feel support from you all in myriad ways, all the time. (But if you do, please send me pictures!)

It's November 2020. The election is over and Joe Biden has won. I still have cancer and I'll be bald tomorrow. I hope it's a turning point, both personal and global, because it feels like one. We've given up a lot in the last four years and I cannot say that I feel in any way peaceful or accepting about having to give up yet one more thing. But in losing my hair I absolutely refuse to also give up my hope.

(On our walk we did also seem to find a version of The Tower, all that was left of an abandoned house)

Cancer Doesn't Respect Narrative, or, Proof I Don't Live in Live in a Novel

Hello friends,

The last time I updated here was while I was getting my August scans. I didn't share the results, didn't share my treatment plan, and didn't say that I got another set of scans on Thursday. (If you would like the news alone, please skip ahead to the section on "The News" at the bottom.) I know people want to know and I know this is the best way to communicate with you all. But I also avoid it, not only because I'm not used to the idea of purely informational blog posts (though that's true) but because I get just so incredibly tired of being a cancer patient.

I mean, of course I do. It's frightening sometimes and boring all the time. The treatments hurt more than the illness. And often--in my position and today--it's not possible to present anything hopeful or imagine an end to it. Cancer invades your whole life, not simply threatening you with shortening it considerably but insidiously taking over, displacing all the things you were, all the things you enjoy. I have resisted that as much as possible. I've continued to work (except for my leave for surgery) and to socialize (as much as it is possible during COVID) and to keep doing other things (like this weekend retreat I'm on right now). But every time I start to feel like I might be able to live as a regular person, to consider a "long term" beyond the next few weeks or months, I get bad news. And it feels like a rebuke for having allowed myself to hope.

It's not, of course. The news is neutral. The treatments that fail me (or that, in the language of clinical trails, I fail) don't know or care who I am or what's going on with my life. I don't occasion their failure and I don't deserve it. People who are treated successful also don't deserve it. Cancer is random and in its randomness it is cruel.

In its randomness it is also notably resistant to narrative. One reason I was holding off on updating here is that I not only wanted but truly expected to be able to post to say that I was getting better after my surgery. In one sense that is true. I feel very much better without my biggest and most scary tumor. For months (I don't even know how many) the first thing I would do every morning when I woke up was to feel the tumor and see if I could tell whether it had gotten bigger. Sometimes, I could tell. Now I have my reconstructed breast, living tissue that has no nerve endings so that I don't (in a strict sense) feel it at all, I don't have to touch it each morning because it will not have changed. The relief of that is indescribable. With that burden lifted--and the only visible marker of my cancer gone--I was feeling so much like a well person that I could not believe my scans would not show the same thing. That they didn't, and that I now have to leave this clinical trial to move onto yet another (fourth, for those of you counting) line of treatment in 20 months, was all the more shocking because I had allowed myself not just to hope, but to forget to think of myself first as a cancer patient.

I study narrative professionally. I consume it for a hobby. I produce it sometimes too. And so on some very deep level I think I expected things in my life to follow a more acceptable narrative path. Surely, after my suffering and after this big surgery, we couldn't expect me to not improve. What audience would accept that! Similarly I have joked before that it's unacceptable that no one, not even people from my past or friends who see me every day, has yet fallen in love with me. Having a life-threatening disease is supposed to come with that particular narrative payoff by rendering my vitality all the more poignant in contrast and/or making someone realize that they cannot imagine their life without me and confess their feelings. I've read the stories! (Of course, I do also usually die in those as a means of realization for the (male) protagonist so there's potentially an upside.)

In cancer stories, there are only two possible outcomes: you die or you don't. If you don't, you may write as a survivor, publishing a memoir that (in the case of breast cancer) someone will insist on giving a pink cover or sticking a ribbon on during the dreaded "pinktober" (welcome!), a month of "awareness" that is hell for most breast cancer patients. And if you do die, you may be published posthumously or live forever (or as long as the servers stay on) in blog posts like these about your "cancer journey" and a Facebook page now managed by your friends or family. The teleological (and obvious) movement of most memoirs towards survivorship is the reason I don't read them. If you give me one I will appreciate it as a sign that you care about me but I will not read it. I'm not headed there. Whenever it happens, however long from now it is, I will die from this disease. And while I may endure, even for a long while, I will never be cured. I don't make a good narrative prospect in this way, for anything I can tell you is as confused, miserable, outraged, and fragmented as I feel when I contemplate those facts.

Cancer doesn't respect narrative, so it's hard to make sense of it. I'm not able to do it here, or in my regular life. I did read one book, "The Undying" by the poet Anne Boyer, that captures the randomness, pain, enlightenment, cruelty, and terror of the experience of having cancer very well. It is a memoir of her treatment and aftereffects for her triple-negative breast cancer that entirely resists the track of most memoirs. It is more like a prose poem, and even while I was frustrated going through it and searching for the facts that would allow me to place her within my cancer frame of reference (what chemo regimen was she on? what trial did she join? where was she treated?), I appreciated it as an act of resistance to the genre. 

I also appreciated that, like me, she was single (though with a teenaged daughter) and had to count on unofficial, unsanctioned kinds of love and support. As she writes:

“But the unexpectedly sick person—the one incapacitated in their body when they should have, in the accepted social order, been doing something else, like caring for their own children or caring for the elderly around them or going to work—must cash in their love me from the collateral of every or any temporal experience, calling in the past, playing on hopes for the future.  Love me, the sick person in the prime of their life says, trying to look as if they will grow strong again, for what I have done before, and also what I might do, and also love me for the present in which I am eternally trapped, uncertain of my exact attachment to time.” (125-126) 

“Cancer was hard, but I had these inventive forms of love to soften it, even if these loves were the completely extralegal and unofficial kind, unattached to the couple or family. But when I was sick I also felt the cold sadness of what would have happened if I was friendless or for whatever reason at that point unlovable, or what might happen to me when I became so.” (288)

I am "uncertain of my exact attachment to time" in that I am trapped not as much in the present as an always-uncertain future. I never feel so alone as when I contemplate my next treatment and try to anticipate how it might steal ever-more of my life, my time, my self. I cannot stand being a cancer patient any longer. But I don't have a choice--except to die and that is no choice.

The News:

For anyone who just wanted to skip to the news, here it is. My August scans showed, unsurprisingly, that while I was out of chemo for surgery my cancer grew in some spots (my lungs) but not others (my liver) and appeared in a new spot on my T2 vertebra. That wasn't awful, in terms of what was expected, so I picked up again with the chemo + immunotherapy. 

I got a call at 5pm on a Friday, which is never a good sign and it wasn't. The scans I had Thursday showed growth in the lungs, a new spot on the liver, and (worst) several new spots on the bones near the T2 (T3, sternum, scapula). In fact, it showed that those new spots had weakened the bone enough that I'd fractured the sternum and scapula, probably a few weeks ago. I worry that this means it's the more aggressive metaplastic cancer.

A note on broken bones: those of you who recall my adventures with my stress fracture in my spine (from running) know it doesn't take much to do this. When your bones are brittle normal activities are enough. I could, potentially, even have done this by sleeping on my right side. And, if you want to know, YES it is painful. I just thought that I had pulled a muscle because I was shifting my weight right while trying not to put too much stress on the left side post-surgery. And that's probably what did happen...except that instead I fractured it. So now I have to try to keep my right side still while also not hurting my left post-surgery side while...living alone. During a pandemic. Who wants to come pick things up for me?! Anyway, it doesn't feel awesome but now at least I know enough not to keep it still as much as possible. (I made a sling out of my own sweatpants of which I was inordinately proud. Photo attached, along with a nicer one from this trip.)

Back to my results. That's enough growth that I have to leave the clinical trial, which they mandate so that you can get the most effective treatment possible which, they determine, doesn't come from their drugs. I understand that, but it also feels like getting kicked off for bad behavior. I'm meeting my team this week to figure out what's next. The treatment I will probably go to next is one I have considered before and that, in fact, I'd tried to get through a clinical trial before it was FDA-approved, IMMU-132. One good thing about it is that I can get it in Princeton (I think) and not have to arrange rides to and from Philadelphia (since no guests are allowed at the hospital). What I don't know, though, is how I'll deal with the side effects. We've sort of reached the end of my minimally disruptive treatments roster, though of course it all depends on the person and perhaps I will be lucky with side effects. As with so many things, I'll just have to wait and see.

I do hope, though, that I'll be able to get back to some parts of my life that allow me to be anything but a cancer patient. I'll try to share some of that here too, since perhaps it's just as interesting to know about as my treatments, but if I don't I'm sorry for the silence. Because this isn't a novel, I don't get to get better (yet). And because I don't get a break from being a cancer patient, I don't always have the energy to talk about not being better yet. I also worry about exhausting the people who care about me with bad news, or even being made to endure an optimism which isn't exactly unfounded (because we don't know what will happen) but in which I cannot share. 

I'm sorry this is not the post it should be by narrative convention. But thank you for reading anyway and for sticking with me during what I can only imagine is a disheartening experience for you too.

Be well and be kind.

Love,
Rebecca

Better Living Through Surgery: Life with Less Cancer!

 Hello from Penn Hospital!

Not to worry - I haven't been here the entire time since my last post, although I did end up spending an entire week in the hospital. Right now I'm sitting in the outdoor section of the cafeteria, which might be a mistake given that I'm not allowed to eat anything until after my CT scans at 1pm. The CT scans are part of my preparing to resume treatment for the rest of the cancer that's still in my body. The last time I had chemo was June 23rd and I've now hit the sweet spot of being a month past my mastectomy (so, mostly recovered) and out of other treatment long enough that I'm not suffering side effects any longer. It feels...almost like I don't have cancer at all.

Two Surgeries for the Price of...Two!

Let me back up a bit to the surgery though. I'd like to report that everything went totally smoothly...and it sort of did! Except that I had to have two surgeries because it also sort of didn't. As usual, what happened to me was super rare (less than 1% of cases!) and I would like to submit a formal retraction of any wishes I had to be exceptional. I've read "The Monkey's Paw." I know to be careful what I wish for. (Although, actually, I'm lying because I still plan to be the exception to the median life expectancy of those with my particular type and stage of cancer. If I have to be in the 1% of cancer cases it ought to be a good thing at least once.)

I had two surgeons for the two parts of my first surgery: one for the mastectomy (removing that incredibly stubborn initial tumor) and one for a "flap reconstruction," which used my own tissue (from my stomach - free tummy tuck!) to build a replacement. When they do that second part, they also take a blood supply so that a substantial part of it is vascular surgery. The reason that the reconstruction ever fails is if something goes wrong with the blood supply. If that happens, it's nearly always (99% of the time!) within 24 hours. What happened in my case was that everything went well with the surgery, even though it took about 7 hours, and I was recovering well and quickly. I was set to go home after my third night in the hospital (so, on Thursday). 

Overnight on Wednesday, however, something went wrong with the blood supply. The new tissue was filling but not draining. What they later learned, once they rushed me back into the OR, was that the vein in it had a blood clot. They were able to fix it by taking a vein from my ankle to replace it. So basically that reset the clock on my recovery so that I ended up having to stay an additional three nights, going home on Sunday. (My initial surgery had been on a Monday.) It's actually extremely lucky that I was still in the hospital, despite how sad I was at having to stay. If I had been at home, far away from experts and surgeons, the tissue probably would have died and the reconstruction would have failed. It was a close thing since I was set to go home. 

Anyone who has ever been in a hospital doesn't need a reminder of how, despite everyone's best intentions it is pretty terrible. I hadn't spent a night in the hospital since I was a newborn, despite all my various treatments, so I didn't know. Now I do and I never want to go back. The hardest part is that they have to wake you up almost constantly for vitals and to assess how the blood supply is doing (listening for arterial and venus sounds). For the first day after each surgery this was every 30 MINUTES, then every HOUR, then finally (on my final night) every 2 hours. And I'm the kind of person who's AWAKE as soon as I wake up. So I essentially didn't sleep more than an hour at a time until the bitter end when a nice nurse got a nice doctor to give me some kind of sedative so that I was able to sleep through the checks. I don't have a kid, so let me just say that this level of sleep deprivation was like nothing I had ever experienced. I see why the CIA used it as a form of torture. I'm a veteran of being tired and of many different kinds of fatigue but never have I been unable to get into REM sleep for so long. I am eager to avoid it at all costs again.

I had been more worried about the boredom than the lack of rest (because, at least on paper, the hospital seems like a place where you would mostly be resting/recovering) and it was indeed very boring. I was SO tired that I wasn't able to really do anything like read a novel, knit, or even really watch TV. I did binge a few podcasts, return to some more "Buffy," and attempt to chat to my parents when they could be there. The COVID visitor policy made it even more isolating and lonely than it would usually be. I was only allowed one "designated visitor" per day so my mom and dad switched off on who that was. Visitors could only be in the room and, once you left, you were gone for the day. So, for example, it's not like my mom could say hi in the morning, pop out and get us lunch, and then come back. All visiting was consolidated for the day. That meant that I tried valiantly to be good company for a few hours, but I imagine mostly I was too exhausted to accomplish that.

I took laps around the hallway (in my mask), which was actually a big achievement especially given the four surgical drains that I had (and left the hospital with). It's amazing how quickly you can lose conditioning in your muscles...and also how exhausting it is for your body to have been, essentially, assaulted and be dealing with wounds. That said, I've been super impressed by my body's healing capacity. I got the drains out within a week for one set and 10 days for another. After that, it was much easier to feel like I was healing and returning to normal. I'll have to rebuild my abdominal muscles, since that part of the surgery involved cutting them (and a new hip-to-hip "smile" scar), and for now I still can't bend all the way over, stand up totally straight (did I ever?), or lift anything heavier than a gallon of milk (because of the reconstruction). I'll probably need some physical therapy, but the ability my body has shown to heal is incredible. 

Also incredible is the difference it has made to my mood and anxiety. In the hospital, they kept asking me for my pain number (which is kind of a useless exercise anyway, in my opinion) and I kept sort of shrugging and saying "2? 3?" to their disbelief. After all, I had open wounds! I had two major surgeries! But the pain of the tumor itself (and especially of the fluid-filled cyst on top of it) had been constant, increasing, and worrying. The pain of the tumor had meant my treatment was failing me and that my cancer was getting worse. The pain of the surgery meant I was healing so I embraced it. I still get tired more easily than I expect and am sure that the recovery period for this is going to turn out to be longer than I anticipate. But it is a huge relief. 

That Bastard Tumor

Now, sadly, they don't actually save your cancerous tumor for you to look at after the surgery. (Honestly sad about this. I wanted to look it in the eye!) But they did send it off to a pathologist. The results made me feel very vindicated in my persistent sense that something about this bastard of a tumor was just DIFFERENT (and worse). They found that it had areas in it that were metaplastic, meaning (essentially) that the cells are hybrid, aggressive, and chemo-resistant. Here's what Johns Hopkins has to say about it:

"Metaplastic breast cancer is a rare form of breast cancer, accounting for fewer than 1% of all breast cancers.  It differs from the more common kinds of breast cancer in both its makeup and in the way it behaves. 

Like invasive ductal cancer, metaplastic breast cancer begins in the milk duct of the breast before spreading to the tissue around the duct.  What makes a metaplastic tumor different is the kinds of cells that make up the tumor.

When the cells of an invasive ductal tumor are examined under a microscope, they appear abnormal, but still look like ductal cells.  Metaplastic tumors may contain some of these breast cells, too, but they also contain cells that look like the soft tissue and connective tissue in the breast.  It is thought that the ductal cells have undergone a change in form (metaplasia) to become completely different cells, though it is not known exactly how or why this occurs.

Metaplastic breast cancers can also behave more aggressively than other kinds of breast cancers. 

Metaplastic tumors are often, though not always, “triple-negative”, which means that they test negative for estrogen and progesterone receptors, as well as for the HER2/neu protein. 

Metaplastic tumor cells are often found to be high grade, which means that they look very different from normal cells and are dividing rapidly.  

Metaplastic tumors are, on average, larger at diagnosis. 

More often than in other kinds of breast cancer, women with metaplastic breast cancer can have metastasis (when the cancer has spread beyond the breast) and may be more likely to recur (come back later in another part of the body)."

Sounds familiar, right? I can tell you, it feels good to get that out of my body! I want to be clear, though, that it was only **some** of the tumor that was this nasty metaplastic cancer. It was, as I described it to the amusement of my surgeon, "like chocolate chips in ice cream." (Way less fun than chocolate chips, obviously.)

That is actually good news too, because it means that there's a pretty high chance that the metastatic sites are NOT this nasty form of cancer. It wasn't noted in the original biopsy back in January 2019, nor in the spinal tumor biopsy in Feburary 2019, nor in my biopsy from July 2019. Metaplastic cells are fairly distinctive so they would have been noted if they were there. At some point, metaplastic regions appeared in the bastard tumor, probably a reason that it stopped responding to treatments that worked elsewhere (including PARP inhibitors and the chemo/immuno combo that I'm currently on). If those treatments, or others, can work on the remaining sites that are NOT metaplastic it becomes much more possible to imagine living with this as a chronic disease. We won't be able to tell until I get today's scans and we see how the next 8ish weeks of treatment go. But still, I think cautious optimism is warranted.

Resting and Recovering

My parents were able to stay with me for another 10 days after I went home and it was so wonderful to have them taking care of me. It made me realize that, actually, I have done the bulk of this cancer treatment without that particular kind of support. I mean, I knew that intellectually, but the difference between having someone looking after me and not was something I almost couldn't fathom on an emotional level. They lived with me for the first 3 months after my diagnosis in 2019 but--thanks to how long was spent getting various tests and seeing doctors--that only included a few weeks of chemo. They would obviously have stayed longer--would be glad to drop everything and rush out whenever I want!--but it's been my choice to continue as much as I can with my "regular" adult life. Being forced not to try was actually quite a favor to me. I'm left with a lot of thoughts about how I ask for help, offer it, accept it (or don't), and how I feel about it. I'll save those for another time, though, and just thank both my parents and my wonderful and tireless group of friends for giving me their support in whatever ways they can.

It's almost time for me to go drink some delicious barium and get a CT (bringing me a couple steps closer to lunch), so I'll just conclude by saying that I felt so good post-surgery that I forgot, for a while, that I still had cancer at all. After all, it was that tumor that I could actually see and feel and that was causing me daily pain and anxiety. Taking it away felt like taking away all the cancer. But, of course, it's still there: in my lungs, my lymph nodes, my bones, and my liver. It's a systemic and chronic disease, but I do at least feel more like I've been given a fighting chance again.

Hope you're all doing as well as can be right now. Be well and be kind.

Love,

Rebecca

In haste: I'm having surgery now!

Hi friends,

I mentioned at the end of my last post that I'd be having surgery: well, it's tomorrow (or today, depending on if you read this Sunday or Monday)! Or rather, it's in about 12 hours. In fact, I only have one hour left to have any food I want before I go under so that's one reason I'll need to be quick. The surgery itself is a single mastectomy, which didn't make sense in the past but which does at this point. As I mentioned, this current treatment--like the one before it--proved to be effective at keeping the metastatic sites stable (no new locations, no clinically significant growth) but not at all effective on the main tumor. That means it makes sense to do a more localized treatment and, long story short, that treatment is taking the whole thing out.

It's a radical step, but in a way one I am very prepared to take because at least it will be something very clearly proactive that is likely to make a difference to my quality of life; the tumor hurts all the time and its presence causes me constant anxiety, not to say great distress.

It's a big surgery, especially since I'm having reconstruction at the same time. Since I had worried that this wouldn't even be possible due to the size of the tumor and the amount of skin that will have to come off with it the whole thing ends up feeling "lucky," though only in context. (The breast reconstruction I'm having is "autolycus reconstruction," which means using your own skin instead of an implant to rebuild the breast. The skin comes from my stomach which, as I told the doctors to their bemusement, is great because that's where I keep ALL my fat!)

I'll be under for about 5 hours, with four surgeons working on it, and in the hospital for the rest of the week. The recovery time is 6-8 weeks. So...it's kind of a big deal! I'm scared, of course, but eager to get it over with. My parents have both flown out from St. Louis and are here to support and help me for the next couple weeks. It's wonderful to see them since the 6 months we've spent apart has felt longer than usual. One of us will, I know, update you when we can.

Be well and be kind,
Rebecca

"The Hardest Thing in this World is to Live in It": I wish I could be your good news

Hi friends,

It's been a long time since I've written here, though with all that's going on in the world I was genuinely unsure if had been months, weeks, or days. Time dilates each day while the days somehow pile up into months. It's actually been about 6 weeks, during which time I had more scans that showed that my primary tumor is still growing.

It's really a stubborn bastard, isn't it? As before, the treatment I've been on has been relatively successful on the metastatic sites (no new locations, some regression in size overall), but the breast tumor itself just keeps getting improbably larger like...well, like a cancer.

On June 1st, the day after I got my most recent news, I posted on Twitter and Facebook to say this:

"Thank you to all of you for liking this and sending your messages of support, both privately and in public. It's hard sometimes to remember in the dual isolation of quarantine and illness that there are so many kind people in the world wishing me well: a bright light in dark times. 

I'll post more about it when I'm able, but I am ok given the situation. My latest scans showed that my cancer is still growing-my 3rd failed line of treatment in 15 months. Good things: metastatic sites stable, no new ones, still approaches to try. But optimism is hard right now. 

In my cancer group, we talk about "toxic positivity," the pressure to present news w/the best possible spin and be a model patient who determinedly soldiers on. I tend only to post when I can do that. Right now, going on feels impossible. I am so lonely and so tired. 

It's not just cancer, though it's quite a burden to carry. Things are bad in the world. Worse than I'd ever imagined. And I am tired of having cancer. But I will never be done while I'm alive. There are burdens we can't put down. It's ok not to bear them cheerfully, for you too.

Addendum: I also feel (absurdly) like I let people down personally when I don't improve (a thing over which I have zero control). In addition to wanting to be better, I want to be your good news, to give us all something to celebrate. I know it's untrue, but it's compelling anyway."

So that's how I've been feeling. I've been wishing, over and over, that I could be your good news, could give you something positive in the midst of all this horror. The fact that I can't turns me quiet and exhausts me in a far more profound way than the ongoing side effects of chemo. I just had my 8th chemo treatment - my first was on January 30th - so that's been 6 months of chemo while working full-time. I didn't realize how burned out I truly was until I used some vacation days (which I had been rationing for hospital days and side effects) for an actual vacation.

It's all more than enough, in combination with all the events going on in the world, to weigh me down. Not only because I do feel, quite literally, weighed down by a tumor that is 8cm x 6.5cm (think of it as a large orange or small grapefruit), but because the heaviness of just continuing to live each day as the pandemic worsens across most of the U.S. and the prospect of ever resuming the still-good life that I was able to manage with cancer--full of things like travel, going to my job, seeing groups of friends, dating, and bars and restaurants--dwindles to almost nothing.

A year in quarantine is a terrible prospect for us all, but a year is longer in my foreshortened life than it is in most of yours. I've become unsure how to continue to live with that, to confront it every day and feel angry that nothing is seemingly ever getting better. I'm actually a fundamental optimist, despite it all, but sometimes enduring, surviving, and keeping on is overwhelming. I just want to be better. I just want not to be alone. I just want to go back to normal. I just want some good news. Preferably, I would like to be that good news.

The quotation in the title of this blog post is, as I know many of you will have recognized, a quotation from "Buffy." (Sidebar: I almost never used the long title when referring to the show, leading one of my UCLA undergrads to inquire once in class, "do you mean the Vampire Slayer?" and yes, UCLA student, yes I do.) I've begun rewatching (or re-re-re-watching? I don't even know at this point) my favorite season of the show, the sixth, which is many people's least favorite. 

**SPOILERS** for a show that began airing in 1997 and a season that ran 19 years ago.

It's my favorite because it is an entire season about loss, deprivation, grief, and trauma. The quotation is the last thing that Buffy says to her sister before she takes the swan dive that leads to her death at the end of Season 5. Her death is meaningful, saving the world and preventing the apocalypse. Yet, at the start of Season 6, Buffy is brought back to life (and to a different network) by friends who claim it's because they believe she is in Hell but whose secondary motivations (their own inability to survive without her) are revealed over time. We soon learn that she was not in Hell (how could she be?) but Heaven (or a "heavenly dimension"). And like Milton's Satan and Marlowe's Mephistopheles, the deprivation that she knows, having been at peace, makes living each day painful. 

As Buffy herself says in 6x03 "After Life" (to Spike, the only one she is able to go to for solace): "Everything here is bright and hard and violent...Everything I feel, everything I touch...this is Hell. Just getting through the next moment, and the one after that...knowing what I've lost ...They can never know. Never." Buffy becomes not the hero she has been for five seasons, but the anti-hero who is no longer able to be what her friends (and the viewers) demand of her: the same. She is profoundly changed, alienated from nearly everyone by the fundamentally incommunicable nature of her pain.

I have never identified with a character more than when, a few episodes later in the beloved musical episode "Once More, With Feeling," she pummels the villains of the day while spouting cliches: "Where there's life--" PUNCH "--there's hope! Every day's--" KICK "--a gift! Wishes can--" JAB "come true! Whistle while--" PUNCH "you work...so hard..all day..to be like other girls. To fit in this glittering world." It's a perfect literalization of the metaphor for fighting depression. (Literalizing metaphors is something the show always did especially well from its very first episode: high school is hell.) 

I feel like this now. Kicking and throwing punches and struggling to make it look effortless, which it most certainly is not, fighting to remain here because the other choices are not really choices. "The hardest thing in this world is to live in it." The line is thrown back at Buffy by her sister at the conclusion of this show-stopping number, only it is now invested with new meaning. We now have more of a sense of how profoundly difficult that can be. How much we must struggle. And Buffy does struggle and she does fail. And that's why many fans dislike the season. 

But I see in her struggles and failures the resilience of someone who continues to fight to stay in the world not because it is good, but because it is enough. The hardest thing in this world is to live in it.

So what will I do now? It's looking very much like I will be having surgery, possibly as soon as within a few weeks. The sheer size of this tumor and its resistance to other treatments make removing it a better option than it has been in the past. There are more details, of course, but I will share them later when I'm not exhausted from chemo. In the meantime, I am going to watch more "Buffy," and so should you.

Be well and be kind.

Love,

Rebecca

How to bear the unbearable? Quarantine week 9, chemo week 15, cancer week 67

I was hoping to write a longer, more thoughtful post about how heroism is boring, day to day, and how ill prepared we are for what it looks and feels like. And hopefully I will! But since I know that it's been a while since I've posted about how things are going, I thought I'd at least catch up those of you who don't follow me on Twitter.

The format makes it easier for me to write briefer updates there, but tonight I wrote more than Twitter usually likes to see about how I feel about my next chemo visit tomorrow (May 15th), which is my sixth on this (3rd) treatment course and the last before I get another set of scans. It's also the 3rd since quarantine began (I snuck one in on March 12th when I was still allowed a companion for the trip instead of chauffeurs). Here's my Twitter thread about it:

"I have chemo again tomorrow bc even though time is a construct I still have to go every 3 weeks. My emotions are all over the place. Most simply, I am tired & don’t want to go through this again. However, it’s some  of my only human contact so I’m also oddly excited.

I don’t mean physical contact (which is minimal & as distant as possible) but sharing space w/another person in silent company. It’s an exceptional circumstance so friends will drive me or sit on my (9 ft) sofa. I want to weep with relief about it, but also I’m angry. (2/)  

Why am I angry? Well, first we all are. This situation is outrageous, unbearable, & yet we must bear it. Second, I live with & suffer from cancer all the time not just every 3 weeks. I’m wracked with guilt & sadness about how much I need my people around me yet cannot ask. 3/)

I want them to make exceptions for me more than once or twice every 3 weeks. I don’t want to ask, though, bc many of them feel stressed by compromising even this much. They cry when they tell me they wish they could be here or, if they are, that wish they could hug me. (4/) 

I have to talk my parents (80 & 76 w/an underlying condition) out of traveling to be with me & suspect & worry they will do it anyway. Of the 504 hours in 3 weeks I spend conservatively 480 alone (& I’m awake for probably 350 of them). It’s unsustainable, unbearable. (5/) 

This is what I’m doing to help stop the spread. Living by myself w/stage 4 cancer, working FT, spending 160 hrs a week alone, excited for chemo so I won’t be. I’m angry that more is not offered me. But I’m furious that others don’t have more perspective on their own suffering.6/) 

I have been doing this for 9 weeks. 9 weeks is more time in my lifespan than it is for most of yours. Do not take away another 3 months, 6 months, a year or two from me. I do not have that much spare time. I know it is unbearable, but please bear it a bit longer. (7/) 

But also: if you do see me (or anyone) walking with a friend or sitting together in the sun, do not assume we are being irresponsible because we are young or because one of us has purple hair. You have no idea what people are bearing in private. Be cautious, but be kind. (fin)"

These past few weeks have felt strained for me too. Mostly I've been doing what everyone has been doing and just trying to get by, enjoying the sunshine when we have it (although it's been spitefully cold and rainy for spring), reading and watching TV, throwing myself into work (especially if it benefits other people), and burning myself out on video calls seeking connection.

When I'm at my least generous, I resent other people (including those I know and love) for only having to endure quarantine itself, or for getting to endure it with someone who loves them and whom they love. I resent the idea of the nuclear family that sanctions a group of 4 seeing one another in one instance, but which makes my friends (living in 1s and 2s and also isolating) feel that they cannot see me. I resent the idea of couplehood that makes me feel that what I'm enduring is somehow a just punishment for my singledom (already viewed as a defect). I feel these resentments, but then I remember to be kind, which is the braver and better thing.

But it cannot be denied that going through this with cancer, as I do every moment of every day not just when I have chemo, is worse than doing it without cancer. If I am quiet on here, or bad replying to texts, or not able to do another Zoom call, it may be because the situation is quite literally exhausting me. It is taking me longer to bounce back from chemo sessions than it used to (now a full week) and I am not able to tell whether that is because of the cumulative effects of the chemo drug (which I was warned about) or because of the psychological drag of the quarantine. I also now find that I can't even really talk on the phone after chemo--that my energy levels are so depleted that only the comfort of having another person around physically works for those worst couple days. It's hard to have the capabilities of your body cut you off from what might be psychologically nourishing.

Thank you, though, for all the good wishes and messages you send from afar (which, now, is nearly anywhere). They absolutely make a difference, as I check my phone repeatedly and incessantly to make sure that, really, I'm not as alone as I may feel. I hope that you are doing as well as you can be doing too, and that you are finding comforts where you can.

Love,

Rebecca

How to Endure: Cancer in the Time of Pandemic

Hi all,

Welcome to a very special birthday post from me in which I mostly think about what it's like to have cancer in the time of a global pandemic. As a way of topping my last year's celebration--where I was just about to start chemo--this year the world is sheltering in place under quarantine orders as an unprecedented public health disaster unfolds around us. (Sorry if my predeliction for dramatic narratives is in any way responsible for this fact...)

I've been trying to work up the energy to post and let you know that I'm doing ok in this time of a global emergency...as ok as anyone I guess. I should say right off the bat that I am not, right now, immunocompromised, although I am at risk for it. We can all hope my system keeps bouncing back as it has done to keep me out of the most vulnerable group. (I do also have lung tumors, so a respiratory infection would automatically come with complications.)

Mostly, I spent a lot of the past two weeks wondering not if but how the pandemic was likely to affect my cancer treatment and I finally have enough information to confirm that, as of now, I'm still able to stay on the study and get chemo as planned this coming Thursday (April 2nd). I had been scheduled to get CT scans on Tuesday, March 31st to assess whether the treatment I started at the end of January has worked well enough for me to continue on the clinical trial. Although I get so many that it has perhaps come to seem routine, "scanxiety" is a very real phenomenon because these are how you learn whether things are going well (or well enough) or whether the disease has "progressed" and you have to regroup and try again with a new treatment plan. It had been since October that I had had a positive scan, with November showing a halting of improvement and December and January documenting the reversal of recovery. So obviously I was anxious and wanted them as soon as possible.

Hearing reports of "non-essential" treatments being canceled, my Penn oncologist and I decided to try to move my scans up. After many phone calls and the efforts and good will of a number of doctors and hospital staff I was able to get them on the 23rd in Princeton (avoiding both the drive into Philly and the potential for exposure there). I'm glad we did because I learned yesterday that the treatment has been working fine; not great, but well enough that a) some tumors got somewhat smaller, b) no tumors got bigger, and c) no new metastatic sites were observed. Clinically, that's ruled as "stable disease" b/c in order for it to be a "partial response" you have to have your cancer go down by at least 30%. But reversing the trend of growth is still a win, and perhaps more time will see more results. And crucially, I do not have to investigate a new treatment option or try to change in the midst of what is soon to be the crest of the pandemic wave of cases. It's only relatively lucky, but I will take it!

I have also seen reports in the cancer community about people having their chemo canceled as non-essential, which was shocking to me. I wrote last year about feeling like cancer should always be a "red ball" case that gets rocketed up the chain for testing, insurance approval, etc. and being shocked that it just wasn't. I understand that in some cases where a cancer patient is immunosuppressed, even attending a treatment at a hospital may pose greater risk than delaying it because the risk of infection is such a threat. But that is an extraordinary statement to make, amidst a daily barrage of extraordinary statements. Not all the stories were that clear-cut, though, so I was glad to hear from my doctor that as a stage 4 patient my scheduled treatments will not be bumped. I cannot have any visitors (and it's a pretty rough thing to do alone), but I can and will get through this. We all will. Because we all have in us more than we know.

***

Shortly after my beloved grandma died (suddenly, from complications during surgery) my dad told me that one of the last things she said to him was that she would be ok because, "I'm a warrior." And she was. From a tiny place in the woods of east Texas, as a teenager she ran her family's store during the Great Depression and cared for a mess of brothers. When my daddy was eight years old, she and my grandfather picked up and moved away from a community where they knew everyone and had for generations to Dallas--an unfamiliar big city--because his younger brother had been born deaf and they wanted to send him to a special school. She founded and ran her own school, an income she supplemented with other jobs while my granddaddy was away walking pipeline for an oil company.

When I knew her, late in her life, she had lost her sight but continued devouring books on tape and listening to the clues on "Jeopardy!". I was the first and only grandbaby and I was adored (not to say spoiled). The only times she actually saw me, before she was blind, I was just a few months old, chewing clean laundry in the basket in which someone had deposited me. As I grew up, she would feel my face, my hair, my ever-increasing height (and joke each time that "I'm going to have to saw your legs off!"). She would listen to my voice on Sunday phone calls; do crossword puzzles with me, as I read clues while lounging on her velour sofa; offer a "piece of Hershey" or a stick of spearmint gum from the same blue tin on the table in which she kept her cigarettes.

She could still piece quilts by feel, even though she couldn't see the fabric, and advised me on the 1ft patchwork square I made for my doll's bed. She was weakened, exhausted, blind, and often in pain (which she tactfully never mentioned with me around). Except when she changed to a polyester pantsuit for visiting the doctor, she wore carpet slippers and housedress with a pack of Marlboros in the pocket that she lit from a gas burner, leaning on her walker by an ancient stove. No one knew quite how old she was when she died--our best guess is eighty-three--because she was also the kind of Southern lady who told no one her real age. She was a warrior in that, despite all that had happened in her life and all that was happening to her body, she kept on going. She endured.

When I search for inspiration to continue with treatments that make me feel worse than the disease, to fight so hard to save a body that's betraying me, to stay in an increasingly terrifying world that's betraying all of us, I think of her last words. I'm a warrior. I will endure.

Believe it or not, you are also and you will too. In our struggles to continue with our lives in the face of monumental uncertainty and paralyzing anxiety, our greatest achievement is to keep on going. We fight (each of us different things) so that we may endure. It is not pleasant. It will reduce you to tears. You will exhaust all your emotional resources. But you will triumph. I have been fighting, existing in crisis mode, for 14 months and that is how I know that you can do it. You must grieve (and allow yourself time for it) for what you have lost, including a sense of safety or normalcy. But as you press on, you will find that inner strength or resiliency. I'm sorry that this is being demanded of you. It is not fair. But that will not change it. You may grieve, cry, fight, and struggle but, ultimately, you will accept that your way forward, your treatment, is to endure.

I've reflected a lot on social media about how living with stage 4 cancer accidentally prepared me for the experience of the pandemic. I wrote a coda to an essay that will be published--likely this May--about the "Body as Data." Since the coda itself will probably change by then, the situating evolving as rapidly as it is, I thought I would share it here. Thank you for being with me and providing that community that has been the saving grace of treatment.

Love,
Rebecca

***

As of writing this essay, it’s been 14 months since my diagnosis. I have tried three different treatments, two of which were clinical trials, one of which I am still enrolled in. It is approaching my thirty-sixth birthday [it's actually today - March 29th] and everyone is sheltering in place because of the coronavirus. I have lived more than a year now tolerating the same kind of existential uncertainty and fear of an alien invader in the body that the world as a whole is now experiencing. I have played my own doctor, watching my body for signs that a treatment is working, or that it is not, in much the same way. I have tried to anticipate what will happen if I become immunocompromised (as I currently am not, but am at risk for) and given up many of the pleasures that made my life better before (traveling, going out with friends) in the name of my health. I have offered my body up as data to research scientists with the goal of furthering not just my own treatment but the survival prospects of future patients.

I did not know that throughout this year I was in training for a time when we would all of necessity be regarded as bodies with the potential to produce valuable data about the spread and effects of COVID-19. We are starved for numbers, for data on infections and recoveries and for statistical models that may relieve us of the uncertainty we feel about the future. I cannot provide that. But I can tell you to be cautious readers of data and statistics that speak with any pretense to authority right now, even though I crave them too. 

Cancer is invisible and so are viruses. This particular virus can inhabit the body but produce no symptom and live for days on surfaces. It may be in us. It may be in those we love. We are in the middle of the data. We are the data.

Susan Sontag wrote in Illness as Metaphor that “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place” (3). A pandemic transcends borders but does not do away with the kingdom of the sick. As someone already resident, I can say to you: welcome. The hardest thing about being here is the grief for what we have lost, including a sense of normalcy. The best thing, though, is what we may find: community in a time of crisis.