One year, eight months, and twenty-eight days ago I unraveled.

Six weeks post-op from my final surgery, I found out that cancer wasn’t quite done with us yet. My mom had it too.

I lost a lot of things that spring—my words, my composure, my pride, my sanity, my optimism, quite a few friends—but thankfully not my mom. Unlike my own cancer, there were no silver linings. I lost a lot but found nothing. I learned nothing, either, least of all how to live in a world without my mom in it. That lesson, I suppose, is for another day, a day I’ll try not to think about much until it comes.

I guess I did discover something about myself, though I’m not sure if I’d call it learning. I found a part of myself that words don’t touch, that speaks no language. Even my own possible death didn’t strike this part of me. But hers did.

I keep thinking about how that first night after she told me, when I had finally made it safely into the driveway–

(she had called me right as I was walking down the stairs from the third floor where my office was and out into the fading late-winter sunlight–or was it sunlight? Maybe it was cloudy that day. No, I don’t think so–and to my car, and I answered because she wouldn’t have called at that time unless it was important, and when she asked me if I would want to know something like this even if it wasn’t totally confirmed yet, I should’ve said no, because I was driving, but I didn’t, because I don’t know what’s good for me at all. I remember I was calm during the conversation–so much so that later she would admit, trying to hide her disappointment, that she had expected somewhat more from me, as I had seemed so collected, so professional, still wearing my work badge and also my work self–the conversation that must have only lasted about as long as the drive did. From that moment on, every day, five o’clock, I left work, got in my car, and relived the overture to the worst time of my life, measuring by each stop sign, each traffic light, each pothole, each turn, the devastating music of that phone call. Here I pulled to the side of the road for a while. There I briefly considered swerving into the path of an oncoming semi. So it was for one year, one month, and eleven days, until the pandemic struck and I packed up the necessities from that office and left to work from home. Only then, I think, did I start to heal.)

–and hung up the phone. Almost immediately I started to sob, and then to howl, a low, animal sound coming from a part of me I had never encountered face-to-face before. It was a sound that shook my body down to the bones, that sent the birds flying from the branches of the trees of my mind.

I remember only two other things from that night. One: curled up on the floor of my room in the dark, knees into my chest, facing the wall. Two: pacing back and forth, lights on now, on the phone with my older brother in London. The part of my brain that makes words had taken over now, and it was processing, churning, digesting, what I knew and how trustworthy the information was, how could the doctor make that diagnosis without evidence, the doctor is a fraud, the whole thing is bullshit.

(The doctor was indeed a fraud and the whole thing was indeed bullshit, but all in the wrong direction. The full medical picture, once we had it, was so much worse than the doctor had falsely claimed.)

It’s right about this time that I stop writing almost entirely. My lifeblood, my first passion, my most reliable source of solace and healing—gone. From then up until now, I’ve barely written anything that wasn’t an extension of my job in some way.

I got through my own cancer treatment by writing—the same way I’d gotten through everything else. Until this morning, when I woke up from yet another nightmare about my mom, I didn’t understand what the difference was.

My own cancer was terrifying, sickening, depressing, nauseating, paralyzing, debilitating—all those things and more—but it was all of those things in ways that could be understood and expressed using language. I lived a thousand different realities during that time, all of which I could name. I wanted to die. I wanted desperately to survive. I thought the chemo would destroy me. I thought the surgery would destroy me. (It did. I’m a fundamentally different person now.) I was so full of gratitude for everyone who helped me. There were so many things I still wanted to do. There were so many things I wished I’d done. The science of it was all amazing to me. Et cetera.

My mom’s cancer was nothing like that. I thought I just couldn’t find the right words—

(“I just don’t want my mom to die,” I tell my therapist. “I just don’t want her to die. What else is there to say? What the fuck is there to even process about this?”)

—but in reality there were no words. That experience lodged itself into a completely primitive, nonverbal, preverbal part of my brain. I was undone by it. I was a cornered animal, a ranting lunatic. I hid it as best as I could, played the role of the dutiful daughter, employee, friend, partner. The mask slipped many times; I feared that others had glimpsed the beast beneath.

Mostly I just desperately wanted to be with her. It was only some instinct of self-preservation that kept me from quitting my job on the spot, moving back to my parents’ house an hour away, and staying there until…until. I was 28, a grown adult, recently engaged and moving steadily away from my family of origin and toward creating a life of my own. In the span of a 15-minute phone call all of that seemed to shatter. I just wanted my mom. I just wanted my mom. I just wanted—

(the day she suddenly passed out in the kitchen and my dad took her to the ER, where she was eventually admitted and someone finally started the process of figuring out what sort of cancer it even was, I was at work, despite the beginnings of a flu the night before, a flu that I absolutely refused to allow to happen and that seemed to recede that morning through sheer force of will. I left work two hours early with my supervisor’s permission and drove like a maniac straight to Dayton, speaking to the doctor on the phone in the car, terrorized the nurses at the hospital until someone told me when the cardiologist would be back, and didn’t rest until my mom was discharged with referrals to oncology, at which point my flu came raging back and I eventually ended up right back in the very same hospital my mom had just gotten out of, which led to two days hooked up to IV antibiotics because I somehow got myself sick with both the flu and cellulitis at the same time. It was as if my body couldn’t even function anymore.)

—I try to write about it. There are no words. There are no words. There are no words. There are no words. There are no words. There are no words. There are no words. There are no words. There are no words—

In the dream my mom dies. And yeah, that’s just the beginning if you can believe it. I remember feeling really confused because she’d had no symptoms and her treatment had just started. Yeah, people die of cancer, but surely there are some warning signs first?

I have difficulty accepting it, but I assume I’m just in the denial stage. I check our Life360 app and try to see her location, then think, duh, her phone is probably still on. I don’t seem to have anyone to talk to. Who even is in my life besides my mom?

Then I wake up one morning and she’s there, and she’s okay. We talk for a while and she reassures me that she’s doing fine. And something clicks and I realize that both of these things cannot be true. She could not have died several days ago and also be sitting on my bed with me. I am having a psychotic break.

I remember having the thought that I’d told my friends (and I have in real life) that if my mom ever died I’d go straight to the hospital to commit myself. Yet I hadn’t done that and it has been days. I realize, too late, that I should’ve gone to the hospital, and not for the reason I’d thought.

And then I’m walking up to OSU’s psychiatric hospital to be evaluated for psychosis—

I wake up so disoriented that I go right back to sleep, which is the worst possible thing to do.

—the dream restarts and I’m back with my mom, visiting London with some of her friends. She is tired from chemo and not really feeling like doing a lot of walking, so we’re just chilling. I’m telling her about the weird experience I’d recently had where I totally hallucinated that she had died which was silly because here she is.

But as soon as I say the words, I start wondering which part was the hallucination exactly, and suddenly it seems weird that we’re…in London? During her chemo? No. Why are we in London if she’s on chemo. This must be the fake part. But if this is the fake part, then she’s dead, right? My chest clenches up and London dissolves—

I wake up again. It’s 8:30AM. Shaking, I start to get myself ready for work. I have my first client in half an hour.

All day, I have to remind myself that my mom is still alive.

The nightmares become a constant presence. In one I’m hanging out with a group of friends, a cuddle pile, when suddenly my dad calls. Come home, he says. My mom is leaving and I should say goodbye before she goes. I leave the gathering and start to drive, although I immediately know it’s already too late, I’ll never make it home in time—

—next thing I know I’ve wrecked the car, right on Olentangy River Road where the Target is. I’m not hurt, but the car isn’t drivable, I have to wait for the police, I need to get home to my mom, I need to get home to my mom, where is she going?

I call my dad and try to tell him what happened, that I wrecked the car, I can’t make it home, I need him to come get me, can he come get me, can he tell her to just wait, please just wait—

I wake up. It’s 8:45AM. I have to be at work in 15 minutes and it’s a 15 minute drive. In life as in dreams, I am never, will never be, on time.

Last night I had another one of those types of dreams. I woke up knowing that it was time to take my words back.

Curiously, I don’t really remember the dream this time. All I remember is the feeling—fear, grief, longing, all swirled together. It’s unspeakably sad, but not horrifying. The indelible images that all those other nightmares left aren’t there this time. This dream was etched into sand on a beach and morning came like a wave, smoothing over all of its edges and leaving just the faintest memory, now wreathed in seaweed.

It’s been one year, three months, and sixteen days since her scans came back clear and this whole nightmare, in some sense at least, ended. But the cancer was technically considered stage 4, metastatic. Is it ever really gone? Will the medication continue to work? Every month we wait for the blood test results to come back.

Fifteen times we have held our collective breaths; fifteen times our bodies have tensed like hunted animals. Fifteen times we sighed in relief and unwound ourselves until next month. Until the next rustle in the grass, which could be a tiger lying in wait, or just the wind, carving its way through the stillness.

Tonight we hold our breaths again. Tomorrow, the blood test. Friday, the results. The verdict. The reckoning.

My mom didn’t simply survive it; she continues to survive it. Present tense. Neither sick nor well, neither here nor there. She lives almost entirely in the moment, making no plans until she gets her test results, and even then only for the next three weeks. Until the next rustle in the grass.

I’m slightly more comfortable than she is when it comes to imagining a future that doesn’t horrify me–but only slightly. I try to grow, plant seeds, meet new people, move up in my career. But if we’re being honest, I would almost always rather be back home with her. The part of my mind that knows no words pulls me back there, always.

And so I too am trapped in suspended animation, a yo-yo at the exact midpoint of its whirling journey—no longer moving away, but not yet coming back, but somehow not quite standing still either—yearning, always yearning, to return home to its source, that which sent it spinning out into the world.

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[Content note: cancer, illness, suicide]

In November, I had my last cancer-related surgery. My temporary tissue expanders were replaced with permanent breast implants, and I was instructed to give my body six weeks to recover, after which I could return to my usual activities.

After five weeks and 6 days, I gave in and started exercising. It was almost the New Year. It was deep winter, a time of planning and setting things in motion. I was finally done with treatment, and I was ready to live again.

So for the next six weeks, I lived. I worked out almost daily. I started my private practice. I made plans. I designed a backyard garden. I took classes, learned new things. I took on new roles at work. I returned to freelance writing.

For six weeks, I lived. I was determined to get back everything I’d lost to cancer, and then some. I enjoyed my time with family, unburdened at last by the demands of treatment or recovery. Having emerged unburnt from the fire, I felt that nothing could stand in my way.

For six weeks I lived like a person reborn. This lasted until February 13.

That day my mom told me she had cancer too. That day, my newfound momentum sent me clear off what I now realized was a cliff, and like the coyote in the cartoon, I looked down and found myself unmoored, unsafe, and spiraling down.

It was nothing like my own diagnosis, first of all. I never thought that “I’m thankful for the way I was diagnosed with cancer” would be a set of words my brain would assemble in that order. But I am. I got the call one day. I saw an oncologist the following day. Within a week, I had a clear diagnosis, a treatment plan, a second opinion confirming those things, and a team of medical professionals I trusted.

This was about as different from that as it could get. For starters, the initial “diagnosis”–the one my mom called me about on February 13–wasn’t even that. It was unfounded speculation from a rude, shaming primary care doctor. I let myself believe for a bit that it wasn’t true. But for the next six weeks, as my mom was bounced around between doctors, hospitals, and scan machines like a dented ping pong ball, the picture continually came into focus, then blurred again.

One day it was early-stage lymphoma. Another it was metastatic ovarian cancer. Some days, other diagnoses were thrown out like beanbags on a cornhole board–lung, stomach, liver, breast, uterine. Doctors would walk out of her exam room completely confident and optimistic, only to return subdued and humbled, their hypotheses disproven, without any others waiting in the wings to be tested.

Picture yourself surviving the worst thing you can imagine, and before your scars–literal ones, in my case–have even fully healed, that same thing happens to the person you love most. That was me.

My mom had always been the person I called when I was so desperately upset I couldn’t do anything else. Now I had lost even that. My parents, through no fault of their own, relied on me in completely unsustainable ways during that time. I found myself supporting both of them, trying to curb my spiraling panic whenever they talked about metastasis and preparing for the worst, comforting all three of my siblings (especially the two teenage ones), fielding calls from extended family and close family friends, driving an hour to question doctors at the hospital while sick with the flu, researching–always, always researching–calling and begging my oncologist to take on her case or make a referral, talking my mom down from panic attacks over the phone, using my own therapy appointments to try to figure out how to live if my mom dies.

I could’ve handled this for a week. Maybe two. The mind goes into crisis mode and you somehow push on.

But it lasted for six. By the third week, I was coming apart. I started to become paranoid almost to the point of delusion, refusing to believe anything any doctor said because so many of them had been wrong. When my mom finally had a vague diagnosis and some semblance of a treatment plan, my mind rebelled against it, refused to accept it, and I ranted like an unhinged person over the phone about how this was wrong, and they hadn’t done this or that test or ruled out this or that possibility, and they needed to find a “real” doctor and get another opinion.

To their credit, they did get more opinions. The opinions all converged on the fact that the particular way my mom’s cancer had played out was so statistically improbable that it had only been recorded 20 times in medical history.

By way of comparison, there have been 23.2 million cases of cancer recorded historically in the United States alone.

This broke my brain.

I walked through the world like a fading ghost. Everything was a reminder of the thing I couldn’t forget anyway. The lemon tree my parents gave me as an engagement gift right before my surgery had unceremoniously dropped its leaves over the winter–they do that–and I couldn’t shake the fear that I was killing the last tangible symbol of her love I would ever get. All of my clients suddenly turned out to have dead or dying mothers that they needed to talk about.

My work suffered–everybody noticed. My parents were often calling and texting me during the workday and I would grasp at whatever few minutes I had between appointments to talk to them, sob inconsolably on the floor of my office, or both. I no longer wanted to be alive whatsoever, but even stronger than that feeling was the belief that I absolutely could not die, accidentally or on purpose, without dooming my family for good. By then I was living only for other people–my family, my partners, my clients–and I was starting to fail every single one of them, noticeably and repeatedly. The more I failed, the more I hated myself, my life, and the world.

It was, in short, a complete fucking living nightmare.

You have to understand—I was never one of those people who wonder Why me? when they get sick. Totally reasonable reaction—just not mine. In some ways this is because I incorporate and adapt to new knowledge quickly, and I was immediately focused on survival.

But the other half of it has to do with the way in which having cancer stripped me bare. I discovered that all of that emotional baggage and maladaptation I thought I’d handled years ago were actually still there, dormant. As all of my learned coping skills and cognitive strategies were eroded away like layers of sediment, I found that there was no bedrock of self-love underneath, no protective sense of my own worth as a person.

And so I didn’t feel the need to wonder what I did to “deserve” getting cancer. I didn’t think I deserved it, but I also didn’t think I’d done anything to deserve a happy, healthy life, either. Honestly, getting cancer kind of made sense. On my worst days I really do hate myself enough to make renegade killer cells an apt (if heavy-handed) metaphor.

My mom’s illness was completely different. As the weeks leading up to the eventual beginning of her treatment wore on and on, I hated the world more and more, and wanted to live in it less and less. I wished an asteroid would hit and destroy it. I wanted nothing to do with a world in which something like that could happen to someone like her. I wanted nothing to do with a life without her in it.

As a patient, I had a dark source of comfort—this too shall pass. You either survive cancer or you die.

I survived. My illness taught me that I can overcome anything. My mom’s taught me that no matter what I overcome, the suffering it brings will never end.

And yet. With something approaching an actual working diagnosis, my mom started her treatment in late March. The treatment seemed to be effective. The tumors shrank. I found myself sometimes thinking about something other than her. Spring came, as it always does, and the seeds went into the ground, and my wondrous garden sprang up once again as if from nothing.

And, just like last year, the new life in my backyard brought life back into me, too.

I don’t know what will happen with her treatment, or the rest of her life. There are reasons for hope and there are reasons for despair. Which one will win out in my mind in any given moment is a coin flip. I still haven’t figured out why or how to live without her if she dies. When she dies, as that’s obviously going to happen eventually. That’s another one of those things I didn’t expect to be thinking about this much at my age.

I haven’t written about this for months, except for scribbled ranting in my journal, because I had nothing to say. I could find no meaning or narrative in it. With my own cancer I learned things, experienced things. I had things to say about fear and bodies and friendship and family and work and joy. It was awful but it was also in many ways profound.

This was nothing. I learned nothing, saw nothing. “What am I supposed to write about?” I remember asking my therapist. “There’s no ‘there’ there. I just don’t want my mom to die. I’m just miserable and terrified and grieving already about that. That’s literally it.”

“You should think about why this happened to you,” my mom’s first doctor said, after ordering CT scans. I have also thought about why this happened to me, to us, as has she. We got nothing.

When I lost the thread of my own story last year, even that became part of the story itself. It was a gap, but the gap spoke volumes. When my mom got sick, I wasn’t weaving the web anymore. I was a fly trapped in it.

So I made do with what I have, and made myself a little cocoon from the fibers.

Then, midway through her treatment, everything changed again. She finally got her genetic test results back. She has BRCA-1, the same genetic condition I have. Then I understood.

She was always going to get cancer. It has always been a near-certainty, since long before I was even born, since before she watched her own father survive cancer.

My dad called and told me, and asked me to be the one to tell her. I froze. Couldn’t do it. On the one hand, it was “good” news, of a sort–it was a medical explanation, and it increases her chances of survival because it makes certain additional treatments possible. On the other hand, I shuddered to think of anyone, let alone someone I love so much, going through the hell I went through. What do I say to someone about to go through what was my worst trauma?

I told my dad this. He said, “It won’t be anything like that. We have your experience to guide us.”

And that’s when everything clicked for me at last.

My mom, like me, was always going to end up in this situation. Statistically, it was much more likely that she would go through it first, and I would go second. But that’s not how it happened, thank god, because this way it was my body and sanity on the line, not hers. Because this way I was the one to be mistreated and traumatized like that, I was the one who learned what I learned, I was the one who had to figure out how to demand humane treatment and pain control, I was the one who realized that panic attacks interact uniquely with this particular kind of post-op pain, I was the one who lived to write about it, I was the one who made it my mission to learn how to talk so doctors will listen and to start to teach that to others.

Now none of that will happen to her, so help me god, because I will be for her what nobody was able to be for me.

And with that came the realization that if I had a choice—if I could’ve somehow chosen to be put through this first so that she may survive it with fewer psychological scars—I would’ve chosen this, because I would do absolutely anything to save her life and her happiness, even face down death myself.

Everyone hopes on some level to find some sort of ultimate meaning in the horrors they go through; my answer to that basically got handed to me. I went through it so she wouldn’t have to, so that I could one day walk right back through the fire I’d escaped, and lead her out with me.

Things became somehow easier after that. While there isn’t any sort of cosmic meaning or significance to all this, I don’t really need there to be. In the unanswerable question of her tragedy, I found an unquestionable answer I didn’t know I was looking for.

After that I did something I didn’t expect to do. It won’t seem like a big deal to anyone but me, but I know what it means.

What I did was I bought trees. Berry trees. Black currant, gooseberry, cornelian-cherry dogwood, lingonberry, hawthorn, fig, mulberry, and, of course, rosa rugosa, which produces those rosehips my mom so prizes.

For the first time I was willing to plant things that wouldn’t give fruit for at least a year if not more, and to trust that on the day they repay all of my digging, watering, fertilizing, pruning, and protecting for the first time, I will still be around, and I will still care. That one beautiful fall day, maybe one of the last, my mom will visit me, and she will steal rosehips from my bushes, telling me that I wouldn’t use them anyway, and her laughter will be strong enough to send the birds from the feeders and bushes, flocking up, up into the dying light.

So that’s where I was, last weekend, digging holes in the yard as the rising summer sun woke up and thawed me.

On the patio behind me, where I’d set it out after the last frost, my parents’ lemon tree was waking too, sending bursts of new smooth green leaves from its buds like offerings to the sun god it worships.

I finished my work, picked fresh herbs from the garden for my mom, threw my stuff in the car, and drove west to Dayton, where my family was waiting for me.

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I’ve always criticized what I’ve sometimes called the chocolate-and-bubble-baths model of self-care, where a series of supposedly “pampering” actions is supposed to somehow replenish you and make you ready to face the world again.

But I think I’ve found the usefulness of these types of activities, and the answer, as usual, lies in mindfulness and intentionality rather than escapism and consumerism.

I used to have a lot of body image issues, and then I found feminism and did a lot of personal work and (I thought) resolved them. Then cancer hit and a lot of that work completely undid itself. Suddenly I was standing in front of the mirror saying shit to myself that I hadn’t said for a decade. That was weird.

But by 2019 my body and I had arrived at a sort of uneasy truce, held together by 1) it not having cancer and 2) me practicing intuitive eating and engaging in regular movement that feels good to me.

And then I got a severe flu, went to urgent care, was not diagnosed with the severe bacterial infection I also coincidentally had, and ended up hospitalized for two days on a near-constant drip of IV antibiotics.

If getting hospitalized for two days due to medical mismanagement isn’t perhaps the most on-brand thing that can happen to me at this point, I don’t know what is. I mean, it’s not like I’m writing a book about that or anything.

That said, the other really on-brand thing that happened was that I rallied and got discharged from the hospital just in time to get a good night’s sleep, keep my travel plans, and hop on a plane to Austin, where I’m now typing this in a backyard wearing nothing but leggings and a tank top. (I deserve this.)

But before all that, I was home from the hospital in a shitty mood with barely enough energy to stand up without something to support me. I also needed a shower. I’ve now done it several times and if you haven’t experienced this, I can absolutely assure you, the post-hospital shower is the best shower you will ever take in your life. It beats post-camping showers. It beats “the landlord finally fixed the sputtering showerhead” showers.

In the shower, I shampooed my hair, used two different kinds of conditioner, and used both body wash and scrub to exfoliate my severely-neglected skin. When I got tired, I sat down on the floor of the shower and let it wash the conditioner out of my hair.

When I felt ready to be done, I grabbed a towel from the towel warmer (I should mention, this was at my parents’ house, by no means do I personally own a towel warmer) and slid the shower door shut again so I could dry off in the remaining warmth.

I noticed that I felt compelled to dry myself more gently than I usually do. Of course this was probably in part because of my recent infection, but that had only affected a small part of my body. I realized I wanted to pamper myself—not in the mindless sense of showering the body in fancy products or putting it through a particular set of actions (no shame if you enjoy mani-pedis, but to me they are painful and awful and I have no idea how that came to abstractly represent self-care for anybody who does not enjoy pain), but by treating it with the sort of gentleness I would treat a loved one returned from the hospital.

After I finished drying off, I found myself saying, “Now, my dear, you are good as new.” I continued: “Thank you for everything you’ve done for me. You fought hard and you won.”

Then I started tearing up.

Then I left the shower and started asking myself why I never thought to speak to my body this way after (let alone during) cancer.

I mean, if what I said was true in this situation—and it certainly felt true—how the fuck isn’t it even more true for the process of going into remission from cancer, regrowing my hair, losing the bloat and swollenness of chemo and steroids, and healing my surgical scars?

The truth is, as miserable as it was to suffer through both a viral and a bacterial infection at the same time—and it was literally worse than chemo, by the way—I didn’t hold it against my body that it happened. It wasn’t something my body “put me through.” It was something we got put through together. I felt awful when I was sick and I felt awful for my poor body. My fever spiked to 105 at times. Almost my entire face turned red and swollen. My lymph nodes ballooned. My head hurt so much I could barely find a way to set it down on the pillow so I could sleep. After my dad made me drink TheraFlu one night, my body violently rejected it into the toilet. (Kids: do not have TheraFlu be the only thing you consume all day, unless you’d like to use it to expel an accidentally-injested poison.) It was just an awful six-day slog of fucking misery.

And I didn’t blame my body for it at all.

I could’ve—immune system failure and whatnot. But I didn’t.

Cancer and surgical trauma felt entirely different. Cancer seemed personal and internal two times over—once because it involved my flawed genes, once because it involved my own rogue cells. After surgery, my muscles seemed to attack me and nobody listened to me.

This time, nobody denied that I was sick and hurting. I felt able to complain, to lie in bed and moan, to seek emotional and medical help. (Half-assed as the latter was at times.) With surgery, my medical care was absolutely top-notch, but that and practical assistance were pretty much the only forms of support I had.

As it turns out, it’s much easier to not to blame your body when your non-physical needs are being heard. It’s easier to care for and even move toward loving your body when you feel fully cared for and loved by others.

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(But, in the words of the great Rebecca Bunch, the situation’s a lot more nuanced than that.)

Last night I was supposed to be on a flight to DC. I arrived at the airport straight from work with some time to spare, checked my luggage, went through security, bought a snack, and arrived at the gate to find that the flight had been delayed by two hours. It was 7 PM. My usual dinner time. I ate some of my almonds but found my hunger worsening. With the delay I would not arrive in DC until about 11 PM, plus a half-hour ride from the airport, so it would be nearly midnight by the time I could finally have a hot, nutritionally complete meal—my first since lunch at noon. What to do?

Lately I’ve been working with a dietician[1] on intuitive eating, a radical (but not new) approach to food in which you learn to pay attention to your body’s hunger cues and eat things that feel good to you. No numbers are involved in this process at any point. It’s not a weight-loss program, or even a “health” program, really. It’s more of a “rebuild a healthy relationship with food and be more mindful” program.

Most people, even those who have a relatively healthy body image and few issues around food, have taught themselves to ignore bodily cues like hunger, satiety, and energy. That’s because bodies are inconvenient and our society demands that we run on its schedule, not on our bodies’ schedules. If lunch is at noon then you eat at noon. If you have a lot of work to do and don’t have time for eating, you keep working until you can stop. If we’re eating now then you eat now even if you’re not hungry. If dinner is meatloaf and broccoli then you clean your plate before you can leave the table because of [insert racist and classist cliche here]. If salads leave you feeling weak and tired but salads are clean and healthy and you need to eat clean and healthy, then you eat salads and feel weak and tired and tell yourself it’s because of something else. If the flight is at 7 PM and there’s no time for dinner beforehand, then you grab a snack and head to the gate, and if the flight is delayed and there’s no one with you to text you updates, then you stay at the gate in case the flight leaves suddenly and you worry about your worsening hunger later.

Recently finished chemo? Recently had a double mastectomy? Recently started hormone suppression meds that put you into early menopause, causing hot flashes, fatigue, weakness, and confusion, especially if you don’t eat properly? Don’t worry about it! Wait at the gate.

Needless to say, I didn’t do that. I went to a pizza place not far from the gate, ordered myself a small pizza with olive oil, bacon, onions, and mushrooms, listened for any flight announcements, did not hear any flight announcements, refreshed the flight info on Google, and missed the flight anyway.

“Should’ve stayed at the gate,” the gate agent said when I appeared half an hour before the flight’s rescheduled departure and inquired what the fuck.

But I was exactly where I needed to be—taking care of my body so that it takes care of ME on my trip.

Now it’s the morning after, and I’m on my rebooked flight to DC, somewhat frazzled but nevertheless feeling energized enough to enjoy my weekend. Because last night when I started to feel really hungry, I had a complete meal with carbs, fat, protein, and fiber, along with hot tea and later water.

Bodies are inconvenient. I’ve tried the thing where you replace your meals with “healthy snacks” because you can’t make time to eat meals. It doesn’t work. I’ve tried the thing where you grab greasy fast food and bring it on the plane with you because you don’t have time for anything else. It doesn’t work. I’ve tried ignoring the problem. It doesn’t work.

What works is paying attention to my body’s physical sensations and responding to them with a combination of carbs, fat, protein, fiber, water, rest, physical activity, and sleep.

In fact, that’s probably the only thing that ever would’ve worked. But until I got so sick that I HAD to stop and pay attention to it, I ignored it like almost everyone else does.

(No, ignoring my hunger did not cause my cancer, but having cancer caused me to stop ignoring my hunger.)

When you start noticing your body’s cues and responding to them appropriately, you may also start missing flights. Or turning down opportunities, or no longer eating some foods you thought you liked but turned out to actually make you feel bad, or being late to things because you realized you needed to eat first but you weren’t hungry early enough to eat early enough to not be late. You may decide that you can’t be vegan after all, or that you don’t need to eat meat after all. You may notice that you don’t get hungry at 7 AM, 12 PM, and 6 PM. You may get hungry at totally different times. You may need to adjust your work schedule to accommodate this.

You may find a way to avoid many of these potential problems by being strategic about bringing snacks with you or taking breaks from things. But sometimes you’ll forget, or it won’t be enough.

You may also find yourself feeling better, physically and mentally. You may stop sending yourself on guilt-trips over food. You may realize that stopping at Dairy Queen for an ice cream cone after work is actually a great way to boost your mood and make sure you don’t get hungry until you’ve had time to make dinner.

You may even find yourself noticing other types of bodily cues more, too—for instance, that the party is loud and you need a break from the noise, and if you take a break now, you won’t be overwhelmed and will be able to return and stay for the rest of the party and enjoy yourself. Or that these shoes are so uncomfortable that it actually impacts your mood and productivity, so wearing them just isn’t worth it anymore. Or that you always feel vaguely uncomfortable and on edge around this particular person and maybe it’s time to try to figure out why.

Yeah, it’s inconvenient. It makes me feel over-sensitive, fragile, high-maintenance, and a lot of other things we often label women with. It’s difficult that at a moment when I most need to get past my preoccupation with my body’s weakness and vulnerability, the self-care I need the most seems to just highlight those things more and more.

But every time I make the decision to honor my body’s cues rather than ignore them, I can feel that I’ve taken another small step towards well-being. Towards working as a team with my body rather than fighting it every step of the way. Towards feeling at home in myself again.

A missed flight starts to seem like a small price to pay.

[1] If you live in Ohio, you may be able to work with my dietician! Find her here: https://www.kristenmurrayrd.com/

More info about intuitive eating here: http://www.intuitiveeating.org/

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And just like that, it’s over. The surgeon said there’s no evidence of cancer remaining in my body, my hair is growing back, my new boobs are growing steadily until I decide they’re big enough, and I’m trying to grasp that thread of my life that I left dangling over half a year ago and tie it to the one I’m holding now.

As anyone who’s had cancer knows, you’re never really “done” with it. Even after successful treatment, there’s always the possibility of recurrence, the long-term consequences of chemo or radiation, and, in my case, a slew of reconstruction-related procedures and an oophorectomy in 8 years.

That said, now—when I’ve returned to work after my surgery—seems an appropriate moment for a post-mortem on the whole thing. (Sorry, poor choice of wording.)

For a brief window of time after my diagnosis I thought it would be my unraveling. I quickly realized that, instead, it would be my becoming. If a year ago I was in my intermediate Pokémon evolution, I’m now in what feels like my final one. (Don’t forget, though, that even fully evolved Pokémon continue getting stronger and learning new moves, and that eventually someone might “discover” mega-evolutions and I might change form again. I’ll leave it to you to decide which Pokémon I might be, before this analogy completely runs away from me.)

Before this I was essentially comfortable with who I was, with how I lived my life and conducted my relationships, with the career I had chosen, with the way I spent my time, and with that most fragile of things, my body. The illness transformed the way I saw all of these things, not in the sense that it made my views totally different, but in the sense that it strengthened, catalyzed, leavened, solidified them.

Any lingering doubts I had in myself or in the people who form my inner circle disappeared. Before, there was a part of me that really believed that when the time came to sit for the exam, the people around me would fail me, and more importantly, that I would fail myself, and that I would be alone in my darkest hour. But nobody failed.

Well, perhaps a few people failed. But their grades had been slipping for a long time, and some of them had really been failing already.

I no longer doubt that my friends and family will carry me forward when I can’t carry myself. But I also no longer worry that I’ll ever become completely unable to carry myself. I don’t struggle with imposter syndrome anymore, and I don’t worry that I’m not enough of an “adult.” What does that even mean for someone who has made the decision to carve up their body to save their own life? What does that mean for anyone, really?

What I keep coming back to every time I write about this strange episode of my life is simply how banal most of it was. It was so banal that I’m not sure I could even claim that I cried more, or was sadder or more scared, on average during this time than during any other period of my life. In fact, I will still say that the clinical depression I experienced from ages 19 to 22 was much worse and left me with so much fewer resources to help myself and seek support from others.

I would not repeat so much as a month of that experience for any price. The cancer, eh, fine, especially if we can do the surgery with proper pain management this time.

The point of that isn’t to pit depression and cancer against each other generally or adjudicate whether mental illness really is worse than medical illness or vice versa; it’s just to say, I already had unimaginably more strength than I thought I did. It just hadn’t been tested and proven yet.

After my surgery, which to me represented the culmination of most of my worst fears, people wanted to know if it was really “as bad” as I thought it would be. Of course, they wanted to hear that it wasn’t. Unfortunately, it was even worse than I thought it would be. It was worse than I had expected even at my most panicky moments. So this isn’t the story of how I overcame those phobias. It’s the story of how I learned that I can survive weeks of unrelenting pain, panic attacks, and suicidality and come out the other side essentially myself.

I’m comfortable saying that I’ve been traumatized by that experience. In dreams I wake up after surgery only to be told that something went wrong and it has to be done again, over and over. Most evenings, when I’m home from the life I’ve finally returned to, alone and in silence, an inexplicable sadness comes over me—so inexplicable that I know exactly what causes it.

It’s not that I “miss my old body,” though sometimes I do. What I feel goes much deeper than that. There are memories, images, that fill me with something I can only call grief—looking back at my parents as I was wheeled away to the OR; watching them cut up my food for me when I couldn’t; walking around on the deck of their house, back hunched, trying to explain to my mom a meditation exercise I was trying in which you breathe the pain in and then breathe it out; when my friends visited me at home two days after and I sat, again hunched, mostly unable to speak or even look at them; the first time I sat on the deck in good weather, no hat, and felt the sun on my skin again; and more, and more, and more.

All of this lives in me now, not compartmentalized or repressed but very much there, just beneath the surface. It ebbs and flows and sometimes retreats deeper and other times comes closer to my skin, where I can all but feel it with my fingers when I press them onto all the parts of me that no longer feel.

It hurts all the time, but it’s also, in its own way, completely normal and healthy. I now contain a lot more things than I did six months ago, and not all of them hurt.

Rather than feeling diminished by the experience, I feel expanded. Which is fortunate because it gives me enough room to contain all of the contradictions inherent to this process. My friends were probably hopelessly confused. One day I’d be crying about what an ugly scarred half-person I am; the next day I’d be marveling at how it feels to dance, to sit in the sunshine, to run my fingers over my healing incisions. One day I would say that my life has been standing still; the next I’d be talking about all I’ve learned, everyone I’ve met, everything I’ve planned.

And then there were the times, most of which I never found the words to explain to anyone, when I felt like I was experiencing something transcendent. I had feelings that felt completely outside of my normal existence and that I couldn’t have had any other way. I’m not a religious person, so I don’t think of it that way. Instead I think of them as moments when I felt the pulse of life. I felt how precious it was, how sacred. I felt overwhelming gratitude, both towards people who helped me in even the smallest ways and towards the universe itself. I felt like I could survive anything.

And then I’d go back to feeling like a broken old piece of crap nobody wants anymore.

Well, it may be confusing, but it’s also part of the experience of being ill—and, to a slightly lesser extent, of being human. I invite you to enter the contradiction with me and make yourself comfortable.

Besides work and spending time with friends, nowadays I’m often working on my garden. Last fall I decided I wanted to try growing fruits and vegetables in the spring, and I had all these ideas about buying all kinds of plants and building a structure to house the containers and starting seeds early indoors, and for obvious reasons that didn’t happen. So I started last week. It was probably slightly late to plant seeds, but it is what it is and it’ll be what it’ll be.

I’ve always loved plants, and always felt disproportionate grief when they sickened or died. Now it’s no different, except that I’m even more aware of the precariousness of life, of the journey seeds must undertake to become plants, and how perilous all of that is. Soil, water, warmth, light. And out springs something that nourishes.

I used to feel beautiful. Now I don’t, and it’s hard to fully imagine what that even felt like. But I think I’m finding my way back to it, slowly. In the meantime, I look around at my pots full of fresh soil and think, maybe I can still make something beautiful.

I understand how plants “work,” mostly, but the more fundamental part of my brain is still stunned every time a seed germinates. I’ve now planted everything I’m going to plant, and some of the seeds have sprouted–pulling themselves up through the soil, hunched over like I was right after surgery, slowly stretching themselves out to stand tall just like I did, and finally unfurling their first two leaves, just like the first time I felt well enough to bring my arms up and stretch them out from my sides as hard as I could, feeling them become a part of my body again.

I can never fully expect them to do it. Every time I’ve ever planted a seed I’ve thought, no way, there’s no way you can just stick these tiny hard things into the ground and a week later they turn into actual plants.

And yet, inevitably, they do.

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Before cancer, I wasn’t sure if I wanted to have kids. I knew that I had plenty of time to decide, and that I might start to feel strongly about having them at some point. But I was committed to not having them until I felt very strongly about having them, and I was also quite certain that I have no desire to experience pregnancy and childbirth. I find the mere thought of it revolting and horrifying.

Because of that, my thoughts about becoming a parent were always murky and difficult to bring into focus. I was obviously aware that adoption is a legitimate option even for people who are able to conceive and bring a pregnancy to term. But everyone I knew–and knew of–who had adopted children had done so because they couldn’t become pregnant or get someone pregnant, or because they couldn’t do so with the specific person they wanted to have the baby with.

I couldn’t imagine having to explain to dozens of nosy people why I had chosen to adopt, and face the disapproval of all the women who believe that pregnancy and childbirth is The Most Rewarding Thing You Can Do As A Woman and would look down on me for wanting to spare my body from it. When I’d shared my feelings about pregnancy and childbirth, I was usually told that if I wanted a baby badly enough, I’d be willing to do anything, even put myself through labor.

I understand now that a lot of that is post-hoc rationalization on their part. I have no doubt that if I actually had a child, I would do anything to preserve that child’s life, even go through pain and suffering like that. But since no child yet exists–the child is theoretical at this point–I’m not willing to sacrifice very much at all. Some people really do feel that way, but I can’t love someone who doesn’t exist yet.

For a long time, these were things I thought about pretty rarely, because they weren’t really relevant. I wasn’t in a place in my life to have a baby, and I had years to get to that place if I wanted to. None of my partners have wanted to have children while we’ve been together, so the conversation didn’t come up that way either.

Then, in an instant, everything changed, and I was sitting in an exam room in a gown and my oncologist was telling me that if I want to be able to conceive later, it would be a very good idea to freeze my eggs before starting chemo.

“Would it delay treatment?” I asked.

“Yes, by at least a few weeks.”

“Does that increase my risk of metastasis?”

“Any delay in treatment potentially increases your risk, though in this case it’s a small risk and many women choose to–”

“Then no.”

You know that scene in Doctor Strange when the Ancient One strands Stephen on top of Mount Everest to force him to learn how to use his nascent magical powers? That was me in that moment. The prospect of death can catalyze all kinds of learning and insight. In that moment, stranded on the mountain, I learned that I value “natural” childbearing so little that I was unwilling to accept even a very small, oncologist-sanctioned risk for it.

The doctor continued: “You seem like you know what’s right for you, but I am obligated to warn you that you might regret that decision later.”

I said: “I may feel sad about it later, yes. But I will never regret being alive to be sad about it.”

A few weeks later, I learned that even if I’m still able to conceive after my treatment, I shouldn’t. I have the BRCA mutation, which raises my lifetime risk of developing breast cancer to about 70% compared to 12% in the general population. For ovarian cancer, it’s 44% versus about 1%. Any child I conceive has a 50% chance of inheriting this shit.

When I brought this up with my doctor, he immediately told me that they can use IVF to select eggs that don’t have that gene and selectively implant those or whatever, but that sounds like 1) a massive fucking headache and 2) something that I definitely don’t get paid enough to be able to afford. In any case, I do know that that’s not how I want to have a child whatsoever. In fact, I don’t want any needles or other medical instruments to be involved at all.

So that makes two reasons so far why I can’t/shouldn’t get pregnant: the chemo may have destroyed that capability, and I don’t want to pass my genes on. Even if I circumvent these two problems, there’s a third: in order to prevent recurrence, I will be on endocrine therapy for a decade. That means that my ovarian function is suppressed and the estrogen receptors in my cells are blocked.

Theoretically, then, I could have a child when I’m 37, after that part of my treatment is over. But at 35, I become eligible to have my ovaries removed to prevent ovarian cancer. So you can bet that within weeks of my birthday I’ll be back in the hospital for that. There won’t be a window for a pregnancy to happen.

Of course, there could be if I asked to delay that surgery, which they would. 35 is just the earliest age when they’ll agree to do it. But to me that’s just like my decision about delaying chemo to freeze my eggs: in a word, nope.

So, in a matter of weeks I understood that becoming pregnant would be impossible, inadvisable, unethical, or at least more risky than I’m willing to accept. That option summarily slid off the table. I started to consider seriously the fact that adoption would be my only practical way to start a family.

At first I highly disliked this option too. There’s a lot to criticize about how adoption works in the United States. I hated to think that I might end up adopting a baby that some mother–probably young, probably poor, probably non-white–had been pressured to give up. International adoption felt out of the question to me, for similar reasons plus white saviorism. And if we’re being honest, I’m also appalled at the idea of paying such frankly ludicrous sums of money to adopt a child who needs a home anyway. It’s not like the adoption agency is doing me some sort of favor.

And I worry, too, about having a child with an unknown genetic legacy. At least in my family we know what the dangers are. With an adopted child, how would I be able to guide them to take care of their health in adulthood if we have no idea what their vulnerabilities are?

Then again, my parents didn’t know I had the BRCA gene, either.

But in any case, these are mostly solvable problems. I can do my research to ensure that my adoption is as likely as possible to be ethical and non-exploitative. I can make sure my child’s birth parents are as present in their life as they want to be. I can, somehow, save up $30,000. I can accept that we can never fully plan for medical crises.

Once I realized this, my thoughts about becoming a parent started to lose that murky quality that they used to have. I’m still not sure if or when I want to start a family, but I’m no longer distracted by my overwhelming fear of pregnancy and childbirth. Now I can imagine what it might be like to have a baby without all of those visions being clouded by phobia.

As you can imagine, things seem a lot more positive when they aren’t preceded by nine months of suffering. I imagine welcoming a baby into my home without already being wrecked with pain and fatigue. I imagine greeting my baby for the first time with my mind clear and my body strong. I imagine weathering the sleep deprivation of caring for a newborn without already being so depleted by pregnancy and childbirth. I imagine feeding my baby without pain or discomfort. (Obviously, no breastfeeding after a double mastectomy, even if I give birth.) I imagine being able to maintain a sexual connection with my partner even as a new mother. I imagine the months and weeks before I bring my baby home to be full of celebration and activity, not exhaustion, pain, and panic.

I like the idea of meeting my child standing up and wearing clothes, not lying in a hospital bed, covered in bodily fluids with tubes coming out of my body.

Weirdly, that’s what feels natural to me. Pregnancy and childbirth is what feels deeply unnatural, grotesque, and wrong.

And now I’ll never have to go through it.

Of course, that’s ridiculous to even say, because I never had to go through it. I could’ve always chosen adoption if I wanted kids. I know that. But it would’ve been a much more complicated choice, and I would’ve been expected to continue to defend it, or at least say something about it.

Now pregnancy and childbirth are off the table, and although they were never the only things on the table, they took up more than their fair share of space on it. Now there’s plenty of space for other possibilities, possibilities that I might actually enjoy considering.

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Disclosing this to my clients a week after diagnosis–telling 40 or so people that I have a potentially lethal illness and then taking care of them around that disclosure–is the most difficult challenge I’ve faced in my professional career so far. I found myself having to reassure people about something happening to me, something I found (as most people would) horrible and terrifying.

This situation turned the usual ring theory inside out. Normally the person at the center of a trauma or tragedy is the one who gets taken care of by everyone else. But as a therapist, it’s my job to take care of my clients. Which is probably why the conversations were sometimes so raw and awkward–my clients sensed that they “should” be the ones comforting and reassuring me, but they also understood that that’s not their role. And because of the strong therapeutic relationships we’ve already cultivated, we were able to talk about that directly.

I had my last chemo treatment this past Monday, so things are going to be more straightforward from here on out. But that doesn’t mean I’ll be able to stop having conversations about this with my clients. I have multiple surgeries and other procedures in my future and it could drag on for years. I may not be able to be at work as much as my clients (or I) would like, but I hope that by being open and honest I can reassure them that help is available even when I’m not there and make sure they know how much I wish I could be there with them.

Over the past four months, I’ve had to radically redefine what professionalism and appropriate self-disclosure mean to me. As it turns out, vulnerability isn’t just good for my friendships and partnerships; it’s good for my professional relationships too.

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For weeks now I’ve been begging myself to write something, anything. But the words just don’t come.

It’s not that I don’t care anymore about the things I used to write about. Though I do click away from the news a lot of the time, I know I care, it’s just that my brain is usually too full with a buzzing sort of panic about my impending loss of autonomy, mobility, dignity, bodily integrity. That’s when I’m not panicking about simply dying.

I think about very little else anymore. The surgery. Researching everything I can about the surgery. Looking up and buying things for after the surgery, special clothes, pillows, anything to reduce my dependence on other people. Writing down lists of questions to ask some doctor at some point. I’m not always sure which questions should be directed to whom–the medical oncologist, the surgical oncologist, the plastic surgeon, the anesthesiologist, a social worker. Recounting to my parents my meticulous list of boundaries to retain whatever control I can over this impending horror–instructions about when they can and can’t see me in the hospital, when to give my phone back to me, who can touch or see what or how. Listing activities I may be able to do while I’m recovering–reading, writing, knitting, gaming, drawing–and making sure that I acquire everything I need for all of these things just in case something sticks. Planning out outfits that I will be able to dress myself in, independently. Asking the surgeon questions like, “Are you saying you don’t RECOMMEND that patients do this on their own, or just that they may find it uncomfortable and want to ask for help?” Because I will take the discomfort.

It has turned into a full-on obsession, and some part of me realizes it’s not healthy, but at the same time it’s also a coping method. It is easier, and probably healthier, to make packing lists than to let myself “be with” the fear, and imagine over and over being ripped open and stitched up again with tubes coming out of places they shouldn’t be and stuff that’s not supposed to be inside my body being inside of it and stuff that was supposed to be in there not being there anymore. And to be clear, I certainly imagine plenty of that. It comes completely unbidden. It’s a wild, untamable, primal fear. I’m like an animal being led to slaughter. My mind flings itself against the bars of its cage, over and over, despite the damage it does.

This is what it looks like to face down your worst, most paralyzing phobia. I used to say, half-jokingly, that if I ever required the sort of surgery that involved general anesthesia and opioids, I would refuse and simply die. Life called my bluff. I’m not dying, at least not yet.

Plenty of people have pointed out that there’s something maddeningly counter-intuitive about treating early-stage breast cancer, and that’s that it often feels like poisoning and mutilating a perfectly healthy body. I had no symptoms aside from an innocent-looking lump that nobody, not me and not the doctors who initially observed it, really thought could actually be cancer. Now that lump is gone thanks to an overwhelming response to the chemo, and I have to face the idea of having part of my young and tumor-free body hacked off so that I don’t die later. There’s also the thought that if I hadn’t noticed the lump, I might very well be dead now, or rapidly getting there.

The thought keeps going through my head: “And for what?” But I know for what. It’s so that I don’t die. That’s literally all. And though a double mastectomy doesn’t guarantee a cancer-free future, it at least offers a strong hope for one. Without it, that hope would be quite frail.

At the same time, and perhaps because I never exactly felt “sick” or thought of myself as sick, it feels like I’m sacrificing an awful lot just to have what I always naively assumed I’d have anyway–a reasonably long and healthy life. The surgery doesn’t feel like a treatment; it feels like the disease itself. I’m not healing from cancer, I’m healing from something I elected to have done to me, for reasons I can’t quite remember some days.

And yet, being the sort of person I am, I never seriously considered not doing it. Anything other than the double mastectomy seems like a betrayal of who I am, not to mention a betrayal to my loved ones who would have to spend the rest of their lives, like me, fearing recurrence. None of us deserves that kind of fear.

The surgery is a sacrifice that present me is making for future me, for some version of myself I can’t quite envision yet but will have to eventually become. That person will have accepted her new body, or at least gotten used to it. That person will, like the women in my support group, joke cheerfully about the awkward things that happen when you have no sensation left in your chest anymore. That person will maybe date new people again and find some way to explain the breasts, or not. That person will still think about cancer but not every single day.

That person will no longer believe that she’d rather die than get surgery. That person will also be much older than her years.

Don’t get me wrong, this isn’t the way I’d recommend doing exposure therapy for your medical phobia. But this is the way I’ll have to do it.

This is my longest, darkest winter, the winter time stood still. You don’t move forward when you’re fighting something like this; you’re just planting your feet, pushing back, and hoping not to be thrown off the ledge. My career is at a standstill—I have no idea when I’ll get enough supervision hours for independent licensure now. I forget the last time I met a new interesting person; it used to happen every week. I exercise and yet my body grows no stronger. I don’t really get to try and learn new things anymore. Everything I’d planned to do—practicing on the motorcycle, starting a vegetable garden, volunteering at the humane society or the botanical garden, planning a future coaching business, looking into selling my bread at the farmers market—is now delayed indefinitely.

That I knew something like this was probably coming doesn’t help much. For the two years leading up to my diagnosis—the two years since I moved to Columbus—I loved my life so much that I knew it couldn’t last. “Something’s going to happen to fuck this up,” I thought. I’d spent most of the first 24 years of my life pretty miserable, and now I finally wasn’t, and it couldn’t last.

And it didn’t.

And yet, unbelievably, it also did.

There is so much joy still in my life, if not every day then enough to carry me through. I spend entire days with friends sometimes, or else catching up on my library books with the cats cuddled up against me. My parents and sister and I laugh till our sides ache as my brother demonstrates parkour on the lawn in front of my house. Letters and cards arrive weekly in the mail from distant friends, some of whom I’d honestly thought had forgotten me by now. The teapot whistles urgently on the stove. Snow falls, and then rain, and then more snow again. There’s an orchid show at the botanical garden, and I went with my camera, struggling to kneel to take the pictures and stand back up but doing it anyway. It’s 8 degrees, but we go hiking anyway. The regulars at my yoga studio are starting to recognize me, and to know what the hat means. My older brother in London sent me a Switch for my birthday; now when I close my eyes I see beautiful scenes from Zelda instead of body horror. My body aches unbearably sometimes from chemo, so people bring me things. My oncologist calms my panic with his presence the moment he enters the exam room. A coworker finally learned to text just so she could check in on me when I didn’t answer the phone.

And, outside, the days slowly lengthen, and the January chills are gone. Three seasons will have passed by the time all of this is even on its way to being over. The mint in my backyard will have grown back. It has a way of enduring.

As it turns out, I have a way of enduring too.

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[Content note: medical stuff]

A few weeks/months ago (what is time, anyway?) I invited my friends to ask me absolutely anything they wanted about what it’s like to have cancer. The result was this epically-long Q&A, which was actually quite fun for me to compile. Folks have been saying it’s useful and interesting for them too, so I decided to make it public.

If you have questions you’d like to ask and you know me well enough to know how to reach me, feel free to send them my way and I’ll answer them when I update this. Ask anything you want; if I’m not comfortable answering, I won’t. But you can probably tell from this article that there’s not much I’m uncomfortable answering.

The first set of questions is dated November 23, 2017, so some of the details of my treatment have probably changed.

Q: Are there any medical techniques or technologies you’ve learned about that you think are neat/fascinating?

A: Well, chemotherapy is kind of fascinating in and of itself. Different chemo drugs do slightly different things. Some actually kill the cancer cells directly. One of the drugs I’m currently getting, cyclophosphamide, does this through its “metabolite phosphoramide mustard,” which, yum I guess.[1] Some, such as Adriamycin (which I’m also getting right now), try to literally fuck with the cells’ DNA so they can’t reproduce.[2]. Taxol, which I’ll be getting during the second half of my chemo regimen, interferes with cell structures called microtubules (that’s so fucking cute I’m kinda like omg don’t hurt them) which also assist with mitosis.[3] Altogether this regimen targets cancer cells in three different ways and the reason these drugs are used together in this way is simply because decades of clinical trials show that this is the best way we’ve found to use them right now. Neato.

Of course, these drugs also do all of that stuff to healthy cells. But not all of them, which is why chemo doesn’t kill you. Chemo drugs target rapidly-dividing cells, which is why they tend to impact cells in the gastrointestinal tract, bone marrow, mouth/gums, hair follicles, and some other stuff. Sucking on a popsicle during the chemo infusion causes a lot of cells in your mouth to kinda go dormant for a bit because of the cold, which means they’re not dividing very much, which greatly reduces the chance that the chemo drugs will “see” them and target them. It’s kinda like when the Jews in Egypt put blood on their doors so that god would “””pass over””” (HA!) and not kill their firstborns. Random little Judaism reference there.

I sucked on a popsicle during my chemo infusion, did not get mouth sores as a result, but definitely did drop a chunk of popsicle down my shirt while trying to communicate with a very attractive pharmacist who was trying to explain my medication schedule to me.

I will reanswer this question when I think of additional cool medical techniques.

Q: I know you find/were finding all these medical procedures invasive and awful; have you adapted, is the increasing familiarity reducing those horrible feelings?

A: Yes! Those feelings were very much system 1 and not system 2, so they weren’t, like, part of my value system or anything.[4] I’ve always thought medicine was very cool. The more primal parts of my brain just didn’t agree. Now I don’t get those feelings as much. When I do get them, I approach them playfully and let myself and others laugh at the faces I make and the questions I ask. My doctors and nurses are all too happy to help both with the silliness and with the detailed explanations that, while unpleasant at times, act as a continued exposure therapy.

Q: Would you ever try any experimental treatments if offered? (From a legit doc, not woo.) What would make you decide that was a good route?

(Related question: Would you ever consider to enroll in a clinical trial, and why or why not?)

A: Yes, and I already am. I’m in a clinical trial for a drug that may reduce the cognitive effects of chemo. Weirdly, the drug is actually an antibiotic (minocycline) that’s been used for ages as, well, an antibiotic, but seems to have some other properties.[5] Of course, I don’t know if I have the placebo or the drug.

Another experimental technique my doctor is doing is giving a monthly injection of a drug called Zoladex, which suppresses ovarian function. [6] Although that’s sometimes used as a direct part of breast cancer treatment, in my case it’s because of some preliminary evidence that suppressing ovaries during chemo prevents it from targeting them (in the same way that popsicles help prevent damage to the mouth, as I discussed above), which may help preserve fertility since I opted not to do anything legit about that and this costs nothing and has few to no side effects.

As for experimental treatments of the cancer itself, that’s something I’d do only if my cancer was like, extremely rare/considered untreatable/etc. Thankfully mine is actually pretty “routine” as cancers go. There’s no good reason to try anything unproven there. But if I were in that sort of situation, I’d be weighing the known risks and benefits of the experimental treatment against the risks/benefits of treatment as usual, just as doctors themselves do.

I’m also potentially enrolling in a clinical trial for BRCA gene carriers (if it turns out I am one) which studies how the information presented about the gene by doctors impacts decision making. For that study, I wouldn’t be denied any information—I’d just be given some additional resources that I wouldn’t have received otherwise.

In terms of deciding to enroll in clinical trials—I’m a fucking nerd for research and I believe that research is going to save so many lives. I would enroll in any trial that didn’t present significant risks to me. Time or extra needle sticks don’t matter to me (plus I don’t have needle sticks anymore thanks to my port). I love the opportunity to talk to even more doctors about even more nerdy shit.

Q: Has this affected your sex life?

A: Ish? The artificial menopause I’ll have to be in for the next ten years reduces vaginal lubrication, and plus I’ve been having less sex than usual because recovery from surgical procedures/other pain/just having other things on my mind. But when I do have sex, it feels about the same physically and mentally as it did before. Sex wasn’t super important to me before, and continues to not be super important to me now.

Q: Do you have weird food cravings?

A: No, but I’m told this may change further on in chemo. It destroys taste buds, which means I may develop a taste for spicier/more flavorful foods. That would be cool because sensory overstimulation is a huge issue for me right now, with taste and with everything else. I often can’t eat foods I love, whether they’re fruits or whatever else, because they’re just too MUCH.

Lately I keep having very specific food cravings, such as cheeseburgers or Chipotle, late at night. Didn’t really happen before. But that’s neither here nor there. And not that weird.

Q: Is it ever awkward to tell people you have cancer?

A: Yes, all the time. But it also feels extremely awkward to interact with anyone for longer than ten minutes WITHOUT them knowing, because it’s going to come up. It’s a very big part of my life. It’s also not something I feel upset or sad about any longer for the most part, which makes it weird to be like, “So my ridiculous cat tried to sit on my port incision the other day—I have this thing called a port which is used for chemo because I was diagnosed with breast cancer three weeks ago oh no don’t worry it’s okay I’m not even that sad about it now—and anyway—“

But I’m learning to just go with it. On the way to Montreal I met an amazing history professor on the plane—we exchanged numbers and everything—and during the flight we talked feminism and Black Lives Matter and religion and all sorts of stuff, so naturally the cancer thing came up. I told her, “So, three weeks ago I was diagnosed with breast cancer,” and made space for her to say, “I’m so sorry to hear that,” said “thank you,” and then continued on with my point, which was about learning for myself how tragedies sometimes make people come through in ways you didn’t expect. It was great.

Q: How do you feel about having to talk about sex and birth control with the doctors in front of your parents?

A: NOT GREAT. But it was necessary for me to receive the best possible care, medical and familial. Let’s just say we ALL know way more about each other now than we ever bargained for. Life goes on. And thank god it does.

Q: If you need a double mastectomy, and you need reconstructive surgery, would you get implants that resemble your current boobs, or would you want to take a more active design role?

A: I did already think about this even though my surgery’s not till late March at the earliest (I think about everything). Have I mentioned that I love doctors? My plastic surgeon was so direct, blunt, and nonjudgmental. He was just like, “Some people choose to get as close as possible to what they looked like before; others choose to take the opportunity to get a breast reduction or enlargement.” I definitely don’t want them to be smaller. I love my boobs. Having somewhat bigger boobs might be cool, BUT I already have trouble with things like dresses and button-downs, and that would suck. Plus new bras. Expensive. Insurance may cover getting any type of reconstruction I want, but it doesn’t cover the bras. [Update 1/11/2018: apparently it does cover the bras, holy crap.]

Beyond size, I don’t have much control, sadly. I can choose between two types of implants (one of which is just obviously superior) and tissue-based reconstruction, but I don’t have enough abdominal fat to get the same size breasts I have. So it’ll probably be silicone implants, which means perky and lifelike but not exactly natural-feeling.

I may opt for a nipple reconstruction/areola tattoo that looks slightly different than what I have. Or maybe not.

Q: I feel like chemo is a weird toxic potion out of D&D with the range of wild side effects and i dont know how u do it tbh

A: I mean, yeah, basically, that’s one of the best metaphors I’ve seen for it. The way I’m doing it is basically getting very lucky and having great doctors/drugs and almost no noticeable side effects! But they may get worse over time, so I guess I’ll keep you posted.

Q: How are work and work people dealing beyond the accommodations they have to provide? I feel like social workers should get this stuff, but I also know the culture can get uncomfortably self-sacrificing at times.

A: Perfectly. Of my two supervisors, my coworkers, and my clients, not a single person has said or done anything that was anything other than fully supportive and appropriate. Maybe if it were anything other than cancer I’d have something more critical to say, but this is kind of one of the few things where everyone is universally like Holy Shit This Is A Big Deal Oh My God What Do You Need. My coworkers and supervisors have, in my opinion, gone above and beyond in terms of emotional support and other types of assistance. One coworker texts me periodically to check in while I’m out of work. Another brought me a beautiful potted mini rosebush one day while I was at work.

Now, I wish I could say the same about agency policy and how FMLA is set up, but that’s not the fault of anyone I can even name or identify. So whatever.

Q: What’s your least favorite response when you tell people the news?

A: “Oh my god I’m so sorry wow that is H O R R I B L E gosh my so-and-so died of cancer actually”

Q: What’s your favorite thing to talk about these days?

A: You mean besides cancer? Haha. Almost anything but politics, which I don’t care much about right now. Books I’m reading, because I’m happily back to that now. My family. My cats. Food. Plans for the future.

Q: What’s the attitude in your area/among your doctors toward medical cannabis (or is that something you’ve even discussed with your doctors at all)?

A: I haven’t asked/needed to ask, so I can’t speak to that much. But given that it’s been recently legalized in Ohio and doctors at Ohio State like to be on the cutting edge, they’d probably be pretty frank about its potential benefits and potential drawbacks. But I doubt I’ll find myself looking into it, since medical marijuana for cancer patients is mostly used to manage nausea, and my nausea is being EXTREMELY well-managed by the medications they’ve prescribed. (It was more of a thing back before they had those medications, I think.) My biggest concerns with chemo are brain fog and fatigue, and unfortunately cannabis is probably not of much help there.

Q: Tig Notaro in her stand up show about having cancer talks about having trouble having normal conversations with people after being diagnosed because her friends didn’t want to, for example, talk about when things were going badly for them because obviously their shit wasn’t as bad as having cancer.[7]

Is there anything you’ve figured out in terms of when you prefer people to be particularly sensitive about how they talk about cancer things with/around you vs times you wish people would just relax about it?

A: (I love that standup show) I don’t think I have many preferences here, besides the obvious one that I don’t really want to hear about anyone’s fears about me. But that’s just ring theory stuff. I’m happy for folks to continue to vent to me about silly life things that don’t “compare” to cancer in any way, and that was the case even during that first terrible week. There aren’t any like human problems that make me think, “Ugh, I have too much cancer to care about this.”

Now, I definitely get irritated at people who start arguments/debates with me and expect me to give a fuck about addressing their petty ass ignorant little fucking quibbles, but honestly, I already felt that way even before. We all have shit to deal with. I had shit to deal with before I had to deal with cancer. I don’t care about Facebook Debate Club anymore.

Q: What does chemo feel like while it’s happening?/Do you notice it going in?

A: Nope, it doesn’t really feel like anything. What you do feel is the stuff they give you before chemo, which is a powerful cocktail of anti-nausea meds that makes you feel pretty sleepy pretty fast. But I have narcolepsy, yay, so I’m used to suddenly feeling pretty sleepy pretty fast whether or not I’m having anything pumped straight into literal jugular vein. And speaking of that, ports are superior to IVs in many ways but one is that you don’t feel the slight burning or pinching you sometimes feel with IV lines. You don’t feel anything at all. Or at least I don’t.

Q: How large/obvious was the lump when you found it?

A: Large/obvious enough that I found it while mindlessly running my hand over my own body while lying in bed. (Not even in that position they put you in for manual breast exams that makes shit easier to feel.) I felt it instantly. I wonder if it had even been there the day before.

Q: Have doctors recommended changes in exercise?

A: No, although they recommend staying as active as you (safely) can which would definitely constitute a change for most people. I mean, they basically recommend their usual thing of trying to at least walk half an hour each day, or doing some aerobic bullshit at least 3-4 times a week, or whatnot. But the difference is that exercise is one of the only proven ways to help with chemo-related fatigue, so if you really commit to doing it every day, that’s kind of the best thing you can do for yourself. My doctor was glad to hear that I like walking/hiking and already do them a lot because he says that works well for many patients. He said that swimming, which I really want to get back into, is also great, but I may not be able to find a suitable pool close enough to be willing to drive to.

Also, you can’t do any contact sports while you have a port in. But I don’t do that anyway.

Q: What’s the most surprising thing that’s come out of this diagnosis/treatment so far?

A: There really are so many so I’ll probably want to keep coming back to this thought. But the one that’s on my mind right now is the fact that I have become very (almost eerily) calm in the face of most things, including cancer itself. I wasn’t the first week. But. Yesterday [11/22/2017] when I was trying to check in for my flight to Montreal and was told that I can’t go without a travel visa, I naturally took that to mean that I can’t go on this trip, and in the next instant my brain was just like, “Oh, bummer. Okay, let’s see who can pick me back up from the airport. I’ll plan to spend Thanksgiving with my family, or join my friends’ dinner if that doesn’t work out—“ In the next instant the agent told me that I would probably get approved in minutes if I apply online right now, so I did that. As I did, my parents, whom I’d already texted with the unfortunate update, called me, trying to reassure me—“Don’t get upset, we’ll go another time”—but I wasn’t upset. I hadn’t ever even been upset. And not because I’d gone sour-grapes on the Montreal thing, or not cared about it—I was really excited! And very happy when the visa quickly came through. But I just wasn’t even upset. At all.

I do still get upset when people treat me badly, or when sensory stuff overwhelms me or causes pain. I also have my normal social anxiety. I’m not a weird positivity robot. But like…this is weird and cool!

Q: What is the chemotherapy regimen that your doctors have suggested/decided on?

A: I talked about this a bit in the first question, but it’s AC/T. (Adriamycin and cyclophosphamide together, then Taxol on its own.) It’s dose-dense (every two weeks), four doses of AC, four doses of T. The other components of my treatment are surgery (exact type TBD), possible radiation depending on the type of surgery, and ten years of hormone therapy. No stem cell transplant indicated as far as I know.

Update (11/28/2017)!

Q: How often do you get chemo? How long do infusions last? How are you feeling about the port/Matrix hole now that you’ve had it for some time?

A: Every two weeks, on Monday. It takes about two hours once you actually get in the chemo chair, but before that there’s all the usual vital signs stuff plus accessing the port, doing bloodwork, and meeting with either the oncologist or his nurse practitioner to talk about how stuff is going and have a physical exam and discuss anything concerning in the bloodwork (hasn’t been anything concerning in mine). Altogether I was probably there for three and a half hours yesterday [11/27/2017].

I feel better about the Matrix hole now! I don’t think about it except when I accidentally touch it and remember it’s there (it’s a raised bump on my skin). Definitely better than IVs and blood draws, not that those really bother me anymore either.

[Update 1/11/2018: I’m now on the second part of the chemo regimen, taxol, and it takes much longer. Like four hours.]

Q: Can you describe some of the experiences around having the port?

A: Now that it’s actually healed, I don’t have to think about it much. It feels like a weird little raised bump on my chest and there’s a noticeable (but not extremely so) scar. Before it healed, there were some uncomfortable moments, such as when Anya sat on it and when I stood up from a sitting position and suddenly FELT it inside me, bringing on a powerful wave of phobia-induced dizziness. But I was able to avoid passing out.

When they access the port for IVs, it doesn’t feel like much of anything. They poke it with a special needle, which I guess feels kind of just like getting a normal shot (NOT like getting your blood drawn or having an IV put in). They have to flush it with saline before and after using it to prevent infection; I hate this because saline smells bad and that triggers my phobia a bit, but it doesn’t feel like anything. One Monday for chemo I decided not to take my anti-anxiety meds and see what happens—unfortunately, I did have a panic reaction and the nurse had me lie down and talk to her about unrelated things, which helped me overcome the panic soon enough.

During chemo, they cover the port with gauze; the catheter sticks out of my shirt and that’s where they hook up all the pre-meds and chemo infusions to. I would forget it’s there if not for the tube and the fact that the creepy IV robot has to follow me if I go to the bathroom.

I intentionally don’t look when they do anything with anything, so I couldn’t even tell you what it looks like.

Q: Inasmuch as having crushes and flirting were part of your life before, has that changed in the last month?

A: I don’t think so, because they were barely part of my life before. I get crushes very rarely, and most of the time when I get them, I don’t have much of an urge to “do” anything about them so they just go away. Now I have even more on my mind that isn’t dating/relationships, so I imagine I’ll get them even less. I had a hard time understanding the concept of dating before; now I don’t even really understand what the point would be. I have so much love in my life from friends, family, and partners. Anyone new who wants to be a part of that loving circle will have to really prove themselves, because I’m past wasting my time.

Q: How effective are meds at managing the side effects from everything? Like what’s the state of the science on making chemo as less-sucky as possible, at least in your experience?

A: Very! A lot of this is very new, not even just because the drugs are new (some aren’t) but because the whole idea of doctors actually caring about your chemo side effects is new. I get the sense that before, it was kinda like, “Suck it up because this is keeping you alive.” Now it’s like, “We have to do this treatment to keep you alive, but you should be as comfortable as possible during it.”

The major side effects is, of course, nausea and vomiting, and those are very well-controlled by the cocktail of drugs that I’m on. They even give you three different anti-nausea drugs through an IV half an hour before they start the chemo infusion. When I really focus on my body and how it feels, I can sense this sort of…massive well of nausea underneath everything, but it doesn’t really bother me and I can just ignore it. I think some of the drugs suppress my appetite a bit, but I try to eat normally by choosing tasty healthy things, and my ability to eat is unaffected.

They also do a lot of other preventative stuff—everyone on chemo now takes Prilosec for heartburn every day, regardless of where they are in the chemo cycle. Heartburn is apparently a major side effect but I haven’t had any.

They also give you a drug that boosts white blood cell production in the bone marrow, which prevents lots of the horrible infections that chemo patients used to have as a result of their immunosuppression. I’m still trying to be careful about it and try to remember to wear face masks in crowded places, but chemo patients used to not be supposed to really go out at all to avoid infection risk.

Fatigue and sleepiness are the ones that meds don’t really help with. Chemo patients are sometimes prescribed modafinil, which I already take for narcolepsy (and which may explain why this isn’t any WORSE than it normally is), but that has a limited impact. Still glad I have it, though.

Q: Did they say if your particular cancer is estrogen-sensitive?

Yes, it is. I’ll be on estrogen blockers for ten years after I’m done with treatment to help prevent it from recurring.

Q: Are there any activities that you’re extra into these days? Moar breb? More dancing?

I’m not sure yet! That might change. There are a lot of things I’m LESS into (cooking, baking, socializing in big groups where I have to pretend I don’t have cancer). I seem to be more interested in things/ideas in general, though, and I always seem to be able to occupy myself by reading books or stuff online. I even made a new Reddit account and use it to find interesting things on subreddits I like.

I also talk a lot more to my family now, about lots more personal things than I used to. During the past month I’ve had the privilege of hearing some truly incredible (and in some cases devastating) family stories. I learned things about my own parents that I never knew. My teenage brother has opened up to me to ask for advice and resources for his own personal issues, and as a result we’ve also learned a lot more about each other. My siblings are very much aware of what’s going on and I feel like they’ve both had to grow up a lot in the past month. As a result, talking to them is different now. We text back and forth; we never really used to do that. On Sunday when I was stuck in the airport and my dad and siblings were driving home from Chicago, Daniel called me just to chat on the phone; I think he either knew, or someone told him, that I was really struggling that day.

I’ve also become more comfortable with not doing much of anything. Sometimes I like just sitting and resting and contemplating my life.

Q: Does the port make you feel like a cyborg (hopefully in a cool sci-fi way)?

Yes. I feel like a character in a dystopian sci-fi novel. There’s an impostor inside my body trying to kill it from the inside out, but science is trying to save me.

Q: Have the cats been behaving differently since the diagnosis? Have they become especially good fluff nuggets?

A: Anya has insisted on laying on paws and applying her healing touch, which I jokingly say is why my tumor has shrunk. But then, she did that before too.

Katya has become somewhat more needy, although again she was always needy. The morning of my first chemo, she pressed herself up against me really hard while I was relaxing in bed. It was like she was worried about me and didn’t want me to go. But I was okay.

Q: So your tumor’s gone? Does that mean you’re in remission and don’t have to do chemo anymore?

A: If only it worked that way! The fact that my tumor is (mostly) gone is definitely a sign of incredibly strong response to the chemo. My oncologist was straight-up SHEWK and even let slip a “Oh my god,” which you don’t NORMALLY want to hear a doctor say while examining your body but this time was very welcome. He explained that most of the time, there isn’t ANY change in the tumor’s size until at least 2-4 weeks (it’s been gone for days and it’s only now been 2 weeks), let alone such a huge change. He also said that it’s rare for chemo to have such a powerful effect while also not causing much if any side effects. He could still feel the tumor there, but barely, so it’ll probably be gone completely soon.

However, this doesn’t signal remission because a tumor is only the most obvious sign of cancer. The reason we have chemo at all is because there could be cancerous cells anywhere in the bloodstream just waiting to latch on to an organ and grow into new tumors, which is why cancer can recur even years after apparent remission. Only a full course of chemo can have the best shot at preventing that. It’s kind of like antibiotics that way.

But yes, this is wonderful news, and very statistically rare. Maybe even as rare as getting this fucking disease at my age in the first place. 

Q: How are you doing?

A: I’m doing well. I’ve accepted that I have cancer. I’m mostly continuing with my life as is, as much as I can.

Q: Is there an official #FuckDonald playlist?

A: Glad you asked! [8] Yes, there is. [9]

Update (1/11/2018)!

Q: Surgery updates?

A: Well, I’ve just about lost the fucking genetic lottery and have learned that I’m positive for the BRCA-1 mutation [10]. Carriers of this mutation have a 55-65% chance of developing breast cancer in their lifetimes, as well as a 39% chance of developing ovarian cancer. According to the best estimates, I have a 33% chance of developing breast cancer in my other breast within ten years if I don’t have a double mastectomy, so that’s what I’m doing, followed by reconstruction. And as soon as I turn 35 I’ll have my ovaries removed also. They won’t do it earlier because of the risks of early menopause.

Also, I’ve named my ovaries Eric and Junior. You’re welcome.

Q: I’ve noticed “he” in reference to (multiple?) doctors. Do you experience any empathy gap with male, presumably boobless, docs? Has it bothered you at all?

[1] https://en.m.wikipedia.org/wiki/Cyclophosphamide

[2] https://en.m.wikipedia.org/wiki/Doxorubicin

[3] https://en.m.wikipedia.org/wiki/Paclitaxel

[4] https://en.m.wikipedia.org/wiki/Thinking,_Fast_and_Slow

[5] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3651660/

[6] https://www.drugs.com/zoladex.html

[7] https://open.spotify.com/album/6ttCxEGqI0tX85k80YPYNu…

[8] Nobody asked this.

[9] https://open.spotify.com/…/…/playlist/67It8E6kC5M3ddB2l9Krl6

[10] https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q2

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The post Everything You Ever Wanted to Know About Having Cancer appeared first on Brute Reason.

Okay, maybe this is kind of turning into a Cancer Blog.

[Content note: medical stuff]

One of the first things my oncologist said to me at the beginning of this whole wild ride was, “Don’t Google.”

Wise words. For the most part, I haven’t. I’ve used some well-vetted websites (such as the American Cancer Society) to help myself prepare for things, but I’ve never intentionally sought out other types of medical information and narratives.

However, Google being how you access legit medical websites as well as blogs, things have nevertheless found their ways onto my screen that shouldn’t have. Some of this was probably unavoidable; some of it definitely wasn’t, especially when people sent me links or I clicked on them.

There’s a lot I didn’t understand about the psychological side of medicine until recently, but once I did, things started to make sense and I started to notice things I’d never noticed before.

For instance, well-trained doctors and nurses who are not characters in TV shows or moralizing children’s books never say “THIS WILL HURT A LOT.” Actually, they don’t even say, “This will hurt.” They say, “You will feel a pinch.” They say, “There might be a burning sensation at first, but it’ll go away in a few seconds.” They say, “You’ll feel a sting when I numb the area, but after that you won’t feel anything. If you do, tell me.” They say, “Some patients find this uncomfortable. If it’s too much for you, let me know and we’ll see what we can do.”

I started to notice that as much as possible, they stay away from words like “hurt,” “pain,” and anything vague or emotionally-charged.

Then I noticed how my doctor responded when I asked about pain management post-mastectomy. He said, “We use a multi-modal pain management protocol. You get four different medications, one of which is an opioid. We find that when patients return for their one week follow-up, the majority of them voluntarily return the opioids to us, saying that they only took a few of them or never needed them at all.”

Next I asked about chemo side effects. He said, “The main side effect patients experience nowadays is fatigue. Everything else is very well-controlled with medication, so if you’re still experiencing nausea or other side effects, let us know and we’ll add medications to control it or reduce the dose of the chemo. Even with fatigue, it varies. The best way to counteract it is exercise. Try to get yourself moving at least a little bit every day. Most of my patients continue to work during chemo, if not full-time. One of them even ran the Columbus Marathon during her treatment.”

Notice what’s going on?

Whenever the question of pain, discomfort, and side effects comes up, good medical providers do several things:

1) They are honest about what most patients can expect, but
2) They don’t focus on the negative aspects or use emotionally charged language to describe it
3) When most patients can expect a positive outcome, they emphasize that
4) When discussing pain or other side effects, they quickly shift focus to what THEY plan to do to address it.

This is very important, and that’s where the psychology of pain comes in. Research shows that expectations of pain play a huge role in our subjective experience of pain—expect something to hurt a lot, and it probably will; expect it to be tolerable, and it’ll hurt less. That doesn’t mean you’re going to magically feel no pain—we have nerves, after all—but there’s a degree of subjectivity to it and we’re learning that it’s a rather large degree.

Unfortunately, once you’ve become convinced for whatever reason that something is going to be very painful, it’s very difficult to un-convince yourself of that, because at that point your brain’s fear response has sort of taken over. That’s why it’s important to manage what information you receive beforehand so you don’t end up with an expectation of intolerable pain.

And that’s why my doctor told me not to google stuff.

Doctors don’t want patients freaking themselves out with graphic descriptions of painful procedures not just because they want to help you avoid panic attacks and unnecessary stress. It’s also because expecting severe pain can lead to experiencing severe pain. More pain means more pain medications, a greater risk of complications and addiction to those pain medications, a longer recovery time, and a generally all-around shitty experience.

A wonderful book I just read, What Patients Say, What Doctors Hear by Dr. Danielle Ofri, describes this phenomenon and cites research dating back decades. From a Washington Post review of the book:

We’ve known for decades that doctors who offer empathy, build trust and set expectations help their patients fare better. As far back as 1964, a study conducted with abdominal-surgery patients illustrated what Ofri calls the “demonstrable effect of the simple act of talking.” Before surgery, half of the patients were visited by an anesthetist who said pain afterward would be normal and would last a limited amount of time, and explained how patients could relax their muscles to lessen the pain. These patients needed half the pain medication of others who didn’t receive a pain talk. If we are an overmedicated nation, better communication would seem an easy and cheap way to relieve that burden — except that listening takes time, and doctors don’t usually have that.

If doctors don’t always have the time to talk to patients about pain in this calming, practical way, we now have the internet to step in and fill the gap. Sometimes it does this well, but often it does it very poorly.

We all know cognitively that you’re likely to find a disproportionate number of negative stories online because people who have a positive or neutral experience are less likely to take the time to describe it, whether that experience is with a restaurant, lawn care service, book, or medical procedure. We know this, but when you’re scared about your upcoming surgery and you stumble upon some first-person accounts, you’re not thinking of it that way and you can’t think of it that way. The fear response takes over.

Even if the experience being described is quite typical and probably fair to expect, it still does patients like me few favors to read those descriptions. First of all, subjective experiences of pain are, well, subjective. One person’s terrible pain could be my absolutely tolerable pain, and there’s no way to know it. Pretty much everyone has pain after surgery; that’s to be expected. But reading about it can still harm me by causing me to expect more pain than I would’ve otherwise had.

Different online sources also have different motivations. I’ve read a few blogs by cancer patients and found most of the accounts there to be pretty neutral and even-handed when it comes to describing cancer treatment. Yes, it sucks, but since these bloggers were documenting their journeys overall, they also described the parts that were okay, and the parts that were just boring, and even the parts that were interesting and better than they expected.

But as soon as you get into first-person narratives being published on websites like Buzzfeed and Slate and whatever, you’re going to see a much more skewed version of things because, as I’m furiously finding out, people love a graphic, miserable cancer narrative. People eat that shit up. Painful medical procedures, disgusting post-op symptoms, bizarre side effects, the works. It gets clicks. It infuriates me.

Even if those experiences are very much real, it doesn’t do someone like me any good to read it. Some patients justify it by claiming that it helps us be better “prepared”—I used to do this too—the fact is that it doesn’t make is better prepared. It makes us less prepared, because it makes us expect the worst and therefore ultimately have a worse experience.

So, when you come across these “raw” and “honest” cancer narratives and you feel the urge to send them to your friend with cancer to help “prepare” them or because you think they might find it validating, take a pause and ask yourself 1) who this is primarily being written for and 2) how exactly this will prepare your friend for what they’re about to face. Put yourself in their shoes. Imagine you’re going through treatment for a deadly illness, and you don’t know if the treatment will even work or how much damage it’ll do to you in the process. Would reading this material help you? If not, it won’t help me either.

What I do find helpful is neutral, matter-of-fact explanations of what I can expect. The best of these have come from my hospital itself, which makes tons of handouts available to patients. Here are some pages from the one they gave me about mastectomy and reconstruction surgery:

Websites like the American Cancer Society, the National Breast Cancer Foundation, and BreastCancer.org also do this well. When I do google, these are the websites I usually click on.

And in terms of speaking to people, two conversations have made a big difference in calming me down and setting more positive expectations for surgery. One was the appointment in which my doctor told me about how most of the opioid medications get returned within a week. The other was when my mom, who had a c-section twice, told me that post-surgery pain just felt like a very strong muscle ache, as if you’d worked out super hard the day before. That was very reassuring. I am no stranger to strong muscle aches.

In my social circles, we generally value sharing and listening to people’s personal experiences, and we emphasize that everyone’s experience is valid and important and so on. I agree with this, generally. But right now, as I’m going through cancer treatment, everyone’s personal experience is not important to me, and I shouldn’t read and give credence to something just because it’s someone’s personal experience. Doing so can not only give me panic attacks, but literally cause me to feel more pain.

So for the time being, I’m trying to stay away from negative and emotionally-charged accounts of cancer treatments, and my friends can help by not encouraging me to read them. If necessary, I’ll “prepare” myself by talking to my doctors. They have yet to make me regret it.

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The post How to Avoid Giving Your Cancerous Friend a Panic Attack: An Introduction to the Psychology of Pain appeared first on Brute Reason.