Thursday, June 25, 2020

"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 hard..all 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.


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