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
