I Learn by Going Where I Have to Go
Well, the very immediate good news is that I’m not dead, which is a plus. I’m down half an eyebrow, most of my tastebuds, and I’m balding like that guy from Curb Your Enthusiasm, but otherwise still standing.
For the past three months every Thursday, I’ve spent a full day at Dana Farber participating in a research trial for a new drug called Pembrolizumab. Yeah, I still can’t pronounce it, even when writing it. We cool kids call it Pembro for short. Like, Yo, bro, give me some pembro. Nope. We don’t actually say that. In any case, it’s immunotherapy.
What is immunotherapy, you ask? Or you don’t, and I tell you anyway:
My first introduction to immunotherapy came via this Wired article, which I think overuses a kitschy car motif a bit, but still managed to make me cry. I hate when that happens.
This guy who basically discovered immunotherapy, James Allison, a Texan, lost his mom to cancer as a kid. I mean, let’s just get the Kleenex out there. If I kick the bucket, maybe they’ll do great things that I’ll never know about. James Allison just won the Nobel Prize.
In any case, when I initially read the article, all I was thinking about was recurrence. I mean, to be honest, recurrence is pretty front burner for me right now.
What you would you do to avoid the 5 year death sentence of metastatic recurrence?
Exercise five hours a week because some article you read said it reduced recurrence by 40–50%? Check. Drink antioxidant/cancer-hating green tea like it’s whiskey? Check. Basically no longer drink whiskey? (The sadness!) Check. Eat vegan? I admit it. I judged vegans. I now put home-grown broccoli sprouts in my breakfast smoothie. It’s so disgusting. Also, cheese, people, no more cheese.
Just a few lifestyle changes to say the least.
A poet whom I admire much, Naomi Shihab Nye has this poem I love called “Kindness.” It starts, “Before you know what kindness really is, / you must lose things / feel the future dissolve in a moment / like salt in a weakened broth.” I mean, I have to say I think I know this feeling — the future dissolving in a moment. Pretty good salt-in-broth simile. I am picking up what you are putting down, Ms. Nye.
But she goes on to say that “then it is … kindness that ties your shoes and sends you out into the day” and I gotta say, this is where the poem has suddenly gone wrong for me.
For a long time, I thought the bad stuff I’d experienced had made me more kind. But for the past few months it has not been kindness that has tied my shoes. It has been fear.
Like, I am on the bald face of a mountain and lightning is striking all around me kind of fear. Fear that in a year or two, I’ll have to tell my kids that it’s back, that it’s metastasized, and that I’ll fight it as best I can, but it’s a losing battle. That I’ll miss their proms, and their weddings, and maybe most importantly, their pre-bed snuggles.
So that’s the fear I’ve been living with. And it hasn’t been that easy. It’s not something you really talk to people about. When you do, mostly, it’s mentioned briefly — as in, there’s about a 30% chance I might die in 3 to 5 years, and they swallow hard and keep the conversation going. And I get it. What the hell do you say to this? I certainly don’t know.
There’s a lot of other emotion that swoops in to try to overwhelm the fear. One is a kind of mid-life crisis sense of doubt about every decision you’ve ever made, and every one you’re currently making. That’s its own thing. I’ve definitely been feeling that.
But the other is hope.
I felt hope briefly, about two weeks after my first dose of immunotherapy.
Immunotherapy is the resurrection story of cancer. There are not enough trumpets. It has brought people literally back from the brink of death. Stage four lung cancer about to die becomes completely recovered and cancer free.
The basic idea is that cancer is just cells that your body should have recognized as enemies, but for whatever reason doesn’t. The cells give other cells in your immune system a secret handshake that says, “Let them stick around, they’re aight.” And then, lo and behold, you’ve got 20% down on the farm.
But immunotherapy uses an enzyme to teach your immune system to recognize cancer for the enemy it is. And fight it. Your own body fighting the enemy. Not some crazy ass chemo that might kill the existing cancer cells, we think, but who really knows what’s hiding somewhere? Immunotherapy puts your body on a seemingly permanent mission to seek and destroy cancer. Boom. Blow that mother f#^*%$ UP.
My particular type of cancer is what they call estrogen/progesterone positive and Her2 negative — the friendliest of the three breast cancers — I can almost imagine Stevie here singing “Isn’t She Lovely?” Anyways, they start research with the worst cancers, and so they haven’t really done any research with immunotherapy and my cancer. Really, I’m like on the front lines of cancer (don’t I sound excited?!?). The stats for the other breast cancers responding to immuno aren’t great — 20% of people respond? ish? So for me, it has been a four-month long total shot in the dark. Thus, the word “trial.”
When I contemplated why to do immunotherapy, part of me was like, we gotta move this science shit forward. Not unselfishly. I was thinking about my own deadline. Recurrence. How quickly could these research scientists turn things around? I had to do my part. The word on the street is that immunotherapy is “revolutionizing cancer.” Scientists’ understanding of cancer is “growing exponentially in short amounts of time.” (I am not quoting actually, but the faux headlines are helping, right?)
Hell, my neighbor has figured out how to get cancer not to move in flies. That is the END GAME for me. I can beat it in the breast, but once it goes anywhere else, lights out. He’s at Cornell right now figuring out how to study this in mice, and I mean, can we speed this UP already?
So when one morning I sat on my bed, talking with my oncologist over the phone while he was in China at a cancer conference about why I should or shouldn’t try the immunotherapy, despite its potentially deathly side effects, I already knew the answer, which is that, if it works, and it’s a long shot at best, but if it works, it’s the fucking balm of Gilead. Actually cancer free, not just temporarily cancer free. Like, the black cloud of recurrence that haunts my every action, gone.
At the very start of the research trial back in July, they did a biopsy of my cancer via ultrasound as a baseline and then they gave me my first dose of immunotherapy, and then I waited.
And two weeks later, they biopsied me again in the exact same spot. And I’m pretty sure the radiologist isn’t really supposed to tell me about what’s happening, but this one whom I’ve had twice now is pretty chatty, (she’s listening to a lot of audio books about how to get siblings to stop fighting — ha, ha ha ha ha ha). Anyways, she said that they were “having a hard time finding the original biopsy site because the margins had changed already so that the tumor looked different.”
At that point, I had been given for several weeks just so much bad news: it was a tumor 1.5 cm, no actually 6.5 cm (in my own experience, I’m able to recognize things almost 5 TIMES BIGGER); it was not in my lymph nodes, yes it was in my lymph nodes; hoping for a low oncotype score (which would mean no chemo and low chances of recurrence) but actually got a medium oncotype which meant chemo, and a bleaker future — and I was cynical to say the least.
So when the radiologist said the margins had changed, I stared blankly at her. It was growing, I thought. And the really nice short-haired, heavy-set technician who had gotten me all set up before the doctor strolled in, seeing my dismay, said, “That’s a good thing. It means the tumor is responding to the treatment.” Those were her exact words. I still remember. After two weeks? Of JUST immunotherapy? The tumor was responding to the treatment?
And I thought of James Allison and his little immunotherapy-fed caged mice in Texas. And I thought of the time that he injected them with tumor over and over again, tumor and more tumor and more tumor, and they didn’t die. They didn’t die. It still makes me cry to think about this passage in that article. They didn’t die. Could the immunotherapy possibly be working? Could I be part of the miracle of science?
I asked my doctors about what the radiologist said. Over email. And again in person. Their responses were vague. They are exceptionally compassionate and generous people, so this is not some attempt at snideness. I don’t really know what it is. Don’t count your chickens before they’ve hatched?
In the past 12 weeks, I’ve had 4 more immunotherapy infusions, 10 chemo infusions, and a whole slew of itchy rashes. And then my hair started falling out. And my hope for a while was wavering, to say the least. I’m not sure why.
It’s hard to hope, I guess. It’s easier to have fear tie your shoes.
Theodore Roethke writes a poem called “The Waking.” It is a villanelle — a 19 line poem that repeats at least two of the lines in each of the six stanzas. One of the most famous villanelles is Dylan Thomas’ poem with his indictive: “Do not go gently into that good night / Rage, rage against the dying of the light.”
Roethke’s refrain is a little more subtle: “I wake to sleep and take my waking slow,” he says, “I learn by going where I have to go.” I’ve always imagined an inch worm’s climbing grass in those lines, I think because Annie Dillard has this great passage as an analogy to writing in which she describes the inchworm’s life, and I’ve conflated the two.
Dillard scorns the inchworm’s inability to get from one blade of grass to another because of its “constant panic.” Hmm. Sounds familiar. “The wretched inchworm,” she says, “hangs from the side of a grassblade and throws its head around from side to side, seeming to wail. What! No further? Its back pair of nubby feet clasps the grass stem; its front three pairs of nubs rear back and flail in the air, apparently in search of a footing. What! No further? What! It searches everywhere in the wide world for the rest of the grass, which is right under its nose.”
Is the grass right under my nose? Hasn’t felt much like it.
The lines of Roethke’s villanelle that have been with me most are not the repeating two, but rather these ones: “This shaking keeps me steady, I should know. / What falls away is always and is near.” Here, too, I imagine the little inchworm in his near-plummet from the top of a blade of grass. Shaking. The risk it takes to hope that his feet will actually land. All that “fall[ing] away” so near.
I mean, I have a pretty strong natural resistance to hope, which I think might have something to do with how I was raised.
I come from people who worked their way up in the world. So much working. Bodily work. Working ALL THE TIME. In their youth, neither of my parents were fortunate enough to go to college. My dad only had a year of technical training in the Navy, but he ended up building a cable TV business from the ground up, literally. He was driving by a TV repair shop in southern Vermont, and stopped in, and the owner saw him and my mom, in their early twenties at the time with my brother, a 2 year old, and I suspect, took pity on them. And eventually, my dad started constructing a cable system.
I remember deliveries of reels of cable wire to the front yard of our turn of the century farm-house on the main street of a teeny valley town. I remember my dad leaving early in the morning to hang wires on the telephone poles with a bucket truck that he parked in our driveway and sometimes returning at dusk with a cardboard box which he presented to me, and which, when I opened it, revealed a painted turtle or a salamander that he had captured along a dirt backroad somewhere.
My parents worked constantly. My mom did all the bookkeeping for the business, managing the office while fixing up our home, making its ancient ugliness pretty with homemade curtains and wallpaper and paint. All the while taking the most amazing care of me and my brother. She has since gone to school to get her nursing degree, and I’m 100 percent sure, there’s no better nurse out there.
They are working people. Pull yourself up by your bootstraps is the expression, I believe. My dad still changes his own oil.
I think this is where my foolish independence comes from. I believe in work. So stubborn. I hate help. I hate to ask for help. I hate receiving it. I especially hate admitting that I need it. But this cancer thing has had me coming around to it.
For a while after I found out I had cancer, that shaking Roethke talks about was real. Literal. I woke up feeling like someone had put defibrillator paddles to my chest every morning. I had to give up coffee entirely or I had full blown anxiety attacks. I have four kids who wake me at all hours of the night. You know it’s real if I’m giving up the coffee.
But the shaking is changing shape. It is like Roethke suggests “keep[ing] me steady,” or at least, steadier. I’ve been running a ton lately — and like that frustrated little inchworm in training, I am learning to put one foot in front of the other. But it’s not because of my own doing. I mean, even with a genetic heritage of hard-working, circumstance-defying people.
I’ve been raised up (I think I’m now quoting a Josh Groban song, but f it) by a whirlwind of care — people who have come along side me (my mom and husband foremost) to hold me when I doubt, when I grieve, when I cry incessantly; a woman whom I met at 35 weeks pregnant undergoing chemo for circumstances almost exactly like mine just visited me for an hour during one of my infusions (with her perfect baby!); people from all walks of my past have reached out to comment on a blog post, or a pic on Facebook, to send flowers, or care packages (with whiskey!); my neighbor rode a bike race through the night in my honor; one of my close friends is running a fricking marathon for me.
Little things, big things, medium things. None of which I deserved.
I think the concept is grace — when someone gives you something you don’t deserve. And grace changes you.
Get ready for the ultimate cheesiness. But I’m feeling it bigtime. Love, even in its smallest acts, can overcome pretty much the worst circumstances. It can create these crazy alternate narratives that allow us to stare death in the face and feel victorious.
I keep thinking about that movie, Life is Beautiful, about the dad in a concentration camp who gets his son to believe that he’s part of a game, to make the terror less terrifying. Because he loves him that much. To be clear, the situations are not even close. But the actions of so many loving people all stacked up have let me believe that this terrible thing that’s happening to me isn’t actually that terrible.
At the mid-point of my trial, some six weeks ago now, they biopsied me again, and that same chatty radiologist who initially said my tumor was responding to the treatment told me that the tumor was exactly the same size as it was when I started treatment. A little less bulky, she said, somewhat obscurely. It could go either way, my doctors say.
In the opening stanza of “The Waking,” Roethke says, “I feel my fate in what I cannot fear.” I don’t know what the results will be, but I am a little less afraid of the outcome now than I was at the start. Maybe the immunotherapy will work. And maybe not.
I am still afraid of dying. Mostly because of my kids. And of course, I would love to be able to walk away from that fear. But I do have an increasing sense that in whatever time I’ve got, there is so much to be grateful for. So much to believe in. So much love to be had.
Dickinson says, “Hope is the thing with feathers /that perches in the soul.”
e.e. cummings, “I carry your heart (i carry it in /my heart).”
And Roethke, “I wake to sleep, and take my waking slow. / I feel my fate in what I cannot fear. / I learn by going where I have to go.”
Carrie Wihbey is an English teacher, mom of four, and wifey. She lives in Arlington, Massachusetts. In her free time, she has no free time. She’s being treated at Dana Farber for breast cancer.