The Freedom of Infertility

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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The Freedom of Infertility
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Why I Told My Clients I Have Cancer

Self-disclosure–what to share about yourself with a client, and how–is a big topic of debate among therapists. Some old-school psychologists think that you should share as little as possible, and be a “blank slate” to avoid distracting the client from “the work.” Other therapists, especially those who operate within a feminist or relational lens, tend to believe that appropriate self-disclosure can strengthen the professional relationship and move the work along.

Most agree on a few things, though–don’t share personal medical details with your clients, and don’t share anything that you haven’t fully worked through already. It’s one thing to mention to a client that you went through a divorce years ago and that there’s no shame in it and that healing will come; it’s another to tell a client that you’re actually on your way to the attorney’s office after work.

I was, until recently, completely on board with these general guidelines. Then I got diagnosed with cancer, and suddenly they didn’t work for me anymore.

Almost immediately, I dreaded having to explain my absence to my clients somehow. I didn’t know anyone in my field who’s ever gone through anything like this. Neither of my supervisors at work did, either. Most of the time when something medical interferes with work, it’s rather more straightforward than cancer treatment–for instance, a surgery. You tell your clients, coworkers, and supervisors varying degrees of detail about the fact that you’ll be out for 6 weeks, and gently shut down any inappropriate questions.

I, however, was about to start chemo and I’d be working through it. I wasn’t sure how much, and I knew that might change as I went through treatment. As it turns out, it’s uniquely impossible to be vague or coy about cancer treatment. I knew right away that if I tried to spin some bullshit about how I’d be off a few days every other week for “my treatment” and then start showing up in wigs, I would come across like I’m either ashamed of it, or think my clients are children. People know what it means when you miss work every two weeks and lose your hair.

Unable to get any clear direction from professionals with more experience, I went next to Google. Here I found a number of articles by therapists who’d had cancer. They all told their clients that they’d be “leaving this position” and referred them to other therapists. I was confused. Were they not planning on returning to work? Would they have to just build up an entirely new client base? That sounds like a lot of fun on top of recovering from chemo.

One article described a therapist processing her imminent departure with her clients and having to pretend that she was moving on to another job, and reassure her clients that it wasn’t because of them and that she really valued working with them.

Later, she received an email about her own former therapist, who had terminated treatment with her the same way. He’d died of cancer.

Ultimately I decided that this level of deception and fakery not only goes against my ethical values, but would literally be impossible for me to manage. Telling my clients I had cancer was painful enough; I couldn’t imagine having to also pretend that the cancer was actually a cushy new job. Having to apologize to my clients for leaving our work unfinished as if it had been my decision, rather than a horrible thing that happened to me.

So I went for the opposite extreme. I told every single one of my clients that I’ve been diagnosed with breast cancer and would be undergoing chemo followed by surgery. I invited them to ask me any questions they wanted about it and reassured them that I wouldn’t answer anything I truly felt uncomfortable with. Some didn’t ask for any details at all. Most asked if I felt okay to be at work. (I did.) A few wanted to know more–what stage, what type of surgery, what chemo feels like, if cancer runs in my family.

Was it awkward? Sometimes. Did it distract from the client’s therapeutic needs? Maybe, in some ways. Is that ideal? No.

The problem, though, is that therapists are in fact human, and we have human bodies that fail in the same glorious ways as everyone else. I don’t believe I could’ve continued to do this work effectively throughout my chemotherapy while actively deceiving clients about what I’m going through. I also don’t think that would make me a very good role model.

A lot of surprising conversations came out of it. One client revealed his own battle with cancer, years ago. He’d never talked about it. A few mentioned that they really ought to be doing breast self-exams because it runs in their families; I told them where to get more information and explained that when caught early, breast cancer is extremely treatable. One client, surprisingly, brightened and smiled when I told her. She explained that a beloved relative is a survivor of breast cancer several times over and that this relative is her mentor and source of inspiration.

Another client said she was glad I told her. “I’ve been working on being more vulnerable and open with the people in my life,” she said. “If you’d tried to hide this, it would’ve sent the wrong message.”

That conversation was a reminder that while therapists often keep personal information from clients in order to “protect” them or to avoid distracting them, clients may interpret this secrecy as a product of shame, callousness, or both.

That’s not to say that my transparent approach hasn’t had its downsides. It does sometimes make my clients feel awkward about sharing their own problems; cancer tends to be that thing people remind themselves at least they haven’t got, so it can be weird to vent about your shitty job when someone’s just dropped cancer into the conversation. But I always reassure my clients that 1) I’m here because I want to be, and 2) I still see their problems as valid and important even though I have cancer now. The awkwardness usually doesn’t last.

It does sometimes make things harder for me, though. When I was first diagnosed and didn’t know the staging or prognosis, I could hear the unasked question on many of my clients’ minds. No, I didn’t know if I was going to survive or not. (Even now, with chemo going swimmingly, I can tell you that I’m pretty unlikely to die of cancer, but recurrence is a thing and it could happen anytime.) I could only tell my clients the same thing I could tell myself–that I had no reason to expect the worst, so therefore I’d hope for the best.

Sitting with uncertainty is one of the most difficult things in life, and probably the most difficult thing about cancer especially. Yet it’s also one of the most important skills to develop, for me and for my clients too.

As treatment went on, I often found myself having to be a bit performative when clients asked how I’m doing. It’s true that chemo isn’t too bad and that I feel okay most of the time. But some days are very hard. Yes, there were days when I wished I’d stayed home from work, but I didn’t because I wanted to be as consistent as possible with my schedule. (There were other days when I called off even though I’d planned to be there.)

Most days, I’m not my best self at work. I’m just not. It’s just impossible. The only other option would’ve been to take all four months of chemo off work entirely, but that would’ve been worse for my clients, worse for me, and ultimately impossible. I don’t have enough medical leave for that.

So although I don’t tell my clients many details about treatment, I continue to be transparent. I’ve told them that I feel tired a lot. I’ve mentioned that chemo sometimes leaves me with bone aches, which is why I stay home a few days after each treatment. I keep a positive attitude and tell them that many chemo side effects are very well-managed with medication and that chemo isn’t what it used to be. My hope is that if any of them end up being diagnosed with cancer, or having a loved one who is, they’ll remember that, and they’ll remember not to be afraid and to ask the doctor for help if they need it.

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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Why I Told My Clients I Have Cancer

Where I Am and Where I’ve Been

Closeup of a frozen creek.
A scene from my favorite winter hike so far. Also an apt metaphor.

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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Where I Am and Where I’ve Been

Everything You Ever Wanted to Know About Having Cancer

[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.

Continue reading “Everything You Ever Wanted to Know About Having Cancer”

Everything You Ever Wanted to Know About Having Cancer

How to Avoid Giving Your Cancerous Friend a Panic Attack: An Introduction to the Psychology of Pain

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:

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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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How to Avoid Giving Your Cancerous Friend a Panic Attack: An Introduction to the Psychology of Pain

Sicklit Literally Traumatized Me

I promise this isn’t turning into a Cancer Blog. Just give me a while to get it out of my system. Along with (hopefully) the actual cancer. 😛

Almost two months ago, I was diagnosed with breast cancer. It’s stage 2, but for the first week, I didn’t know that, which made it probably the most terrifying week of my life so far.

So I started panicking, which is about what you’d expect. For starters, I immediately decided that I was going to die. Like within a year. This subsided somewhat after I learned that the cancer hadn’t spread.

But a lot of my panic was coming from some weird places. I kept experiencing intrusive thoughts about how horrible chemo and cancer in general would be, and they were VERY specific and visual thoughts.

I’ve never been close to someone going through cancer treatment. Certainly not close enough to see what happens to them. My grandfather had it when I was very little (and died of it later), but all I remember of him is that he was happy, did calisthenics every morning, and always gave me fruit to eat, so I’m guessing I don’t have much memory of his treatment.

My only exposure to what cancer and chemo are like is the media. As a child in elementary school, I remember being assigned cute picture books about kids with leukemia. Later, I read a few YA novels where cancer was a prominent theme—what folks now call “sicklit.”

Sicklit is controversial because there’s the usual uproar about kids and teens reading about topics that they’re “too young” for, as if kids and teens don’t experience sexual assault, illness, or abuse. The opposing argument is that reading these books will help young people confront these things if they have to experience them, as well as helping them empathize with others who may be experiencing them.

Usually, that’s the side of any argument about children’s media that I’d fall on. However, right now I also have to acknowledge the fact that I’ve basically been traumatized by literature about cancer meant for young people.

That entire first week, my brain was constantly re-showing me vivid scenes from books I’ve read. Excruciating bone marrow transplants. A teenager going outside at night during a thunderstorm wearing just her nightgown, hoping to catch the flu so her next chemo treatment gets delayed. A girl shocked and crying when she finds a chunk of hair falling out while she brushes it.

That last one about kills me, especially. Don’t get me wrong, losing your hair (if that’s a thing that’s important to you) would be painful no matter what, but why her shock and terror? Did nobody fucking bother to tell her that hair loss is the most common side effect of chemo? Did nobody offer to take her to a salon to get her hair buzzed or shaved, and let her pick out cute wigs and hats and feel some shred of control over the situation?

I mean, sure, it’s fiction. Of course it’s unrealistic. But it’s unrealistic in the most sensational possible way.

Don’t even get me started on teenagers with cancer meeting, falling in love, and dying. That shit made me feel guilty for even having partners right now.

The more I talked to other people, the more I realized that it wasn’t just me, and I hadn’t just read a particularly horrible set of books. My partner asked me once how it feels to get chemo, and recalled a book he’d read about a teenage girl with cancer who described it something like this: “Every drop of that poison burned as it dripped into my veins.”

I about died. Unlike (apparently) the author of that book, I actually have cancer, and I can tell you that chemo feels like absolutely nothing. It’s just like any other IV infusion. You just sit there and chill out or sleep. Yes, sometimes having an IV in your arm can cause some mild discomfort. BUT IT IS NOT SUPPOSED TO FEEL LIKE BURNING. PLEASE IMMEDIATELY TELL THE NURSE IF IT FEELS LIKE BURNING. I’m sorry for yelling but really, you need to tell your nurses and doctors if stuff hurts that’s not supposed to hurt, and how are you supposed to know it’s not supposed to hurt if you read a whole stack of books telling you in the most graphic and gratuitous ways that it does hurt?

That said, over a long period of time, chemo infusions can damage your veins. That’s why they’re not generally done through IVs anymore, but through ports. I explained this to my partner, and he said that in the book, the girl refused to have a port because it sounded weird, and her doctor didn’t try to reassure her, explain how it works, or warn her about the drawbacks of IVs for chemo. You know, informed consent. Okay then, guess we’re going for damaged veins and a hell of a malpractice lawsuit.

I’m glad my partner and I had this conversation so that he didn’t have to go into this thinking that I have to spend two hours in excruciating pain every two weeks for four straight months. Vicarious trauma in caregivers is a thing, just like the vicarious trauma I’m experiencing from reading these things that never even actually happened.

Sometimes when I talk about sensationally unrealistic portrayals of cancer treatment in YA literature, I’m told that somebody’s friend somewhere had cancer and their doctor WAS totally terrible, and their pain was not managed in any way, and they were NOT warned about obvious things like nausea or hair loss, and they WERE told to just suck it up and deal. Yeah, it happens. Some doctors are totally terrible, and until recently many cancer treatment protocols really didn’t care about side effects, and sometimes people are told to suck it up even when relief is totally available.

And it would be one thing if these types of stories effectively prepared young people to deal with such things in real life. But they don’t.

Because the way you deal isn’t by internalizing the idea that your suffering is inevitable and this is just how things are going to be. The way you deal is by learning how to advocate for yourself when possible, and developing resilience and coping skills for the rest.

That starts with knowing that 1) you can and should tell your doctor about all of the side effects and discomfort you’re experiencing; 2) you’re allowed to ask your nurses, techs, and doctors ALL of the questions you want; and 3) lots of procedures and treatments can be altered to make them more tolerable for you, but they won’t be unless you ask.

For instance, my entire treatment team knows about my medical phobia and how it works. (I should note that this phobia is improving significantly now that I have to confront it constantly.) That’s why they often have on hand ice packs and smelling salts in case I start passing out, and they usually find a way to prop my feet up to reduce the chances that that happens. I’ve been prescribed an anxiety medication that I take before procedures, including chemo, and a topical lidocaine cream, which I use beforehand to reduce the sensation of needle sticks. (It’s not that I mind the pain itself; it’s that the pain triggers the panic reaction.) My nurses know not to tell me any unnecessary details about what they’re doing, and they expect to see me put my eye mask on so I don’t see what they’re doing, either.

As a result, I don’t have to deal with uncontrollable panic attacks, and my nurses and techs don’t have to waste their valuable time waking up my unconscious ass and waiting for me to stop sobbing. All I had to do was ask.

I’m sure someone’s going to ask me if I think that authors just shouldn’t write about teenagers dying of cancer or suffering through treatment thereof, but as always, I find that question boring. No, I don’t advocate censorship. Anyone should be able to write (almost) whatever they want. Free speech. Next.

A question I find more interesting is: Do authors who write for young people have a responsibility to try to write in a way that makes their lives suck less rather than more? I think the answer is yes. And as a young cancer patient—so, exactly the person that these books are supposedly for—I can tell you that irresponsibly-written cancer narratives contributed to making my life an unbelievable living hell when I was first diagnosed. I was having flashbacks to stuff that never happened to me or to anyone else. I still do, sometimes.

So much of the pain and misery that comes with a cancer diagnosis is unavoidable. This was completely avoidable.

Of course, there’s a good chance that despite patronizing claims to the contrary, most YA novels about cancer aren’t really meant to prepare young people for anything other than fetishizing and gawking at other people’s pain. Yes, there are some that encourage empathy, too—I do think that The Fault in Our Stars is well-written in that way.

But the fact is that most young people—most people—aren’t going to get cancer. Most people are only going to know someone who does, and maybe the more painful and horrific they think the treatment is, the more they will sympathize, and the more they will help, and the more grateful they will be that it wasn’t them.

So, what I should’ve realized during that agonizing first week is that those traumatizing books were never even written for me. They stopped being for me the moment I got that phone call.

Which is too bad, because I could’ve used a book that could guide me through it. A book that’s honest about the experience of cancer, in all of its horror but also in its mundanity, its potential for nerdiness and curiosity, and even its moments of transcendent clarity. I’m never one to sugarcoat, but even I’ll admit that it’s not just some endless parade of painful side effects, hair loss, and needles. In with all of that bullshit you also get your teenage brother always hugging you super tight and not letting go until you do, and watching the people in your life come through for you in the most extraordinary ways, and having your cat insist on sitting on your surgery incision which hurts but also oh my god she really thinks she’s healing me, and dancing naked–truly naked, no cap or wig–to Christmas music while decorating the tree because it’s almost the end of the chemo cycle and I feel fine, and getting to do physical therapy in a sweet heated pool that the hospital has and floating in that pool and letting the back of your head rest in the water until you don’t hear anything anymore and it’s all OKAY for a goddamn second.

Nobody wrote that book for me. Maybe after I kick this thing, I’m going to write it myself.


A thought that occurs to me that I didn’t find a way to stick anywhere into this essay: YA novels about cancer focus disproportionately on death. I mean, yes, to state the obvious, cancer can be fatal. I don’t think we really need to belabor this point. But did you know that the 5-year survival rate for all childhood cancers combined is 81%? Did you know that the 5-year survival rate for breast cancer, which is the most common cancer, is 90%, and for prostate cancer, the second-most common, it’s 100%? These statistics are from 2006, which means that they’re probably even higher now. (Except prostate cancer. Sorry, probably not much improvement to be made on that one.)

DID YOU ALSO KNOW THAT THE HPV VACCINE PREVENTS UP TO 70% OF CERVICAL CANCERS AND THAT YOUNG ADULTS URGENTLY NEED TO KNOW THIS FACT

And how many of the cancer books I read contained even a little fucking blurb in the back about breast self-exams? Zero. A breast self-exam saved my life. I rest my case.


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Sicklit Literally Traumatized Me

So Your Friend’s Just Been Diagnosed With Cancer

Lost? Confused? Me too. I was just as surprised to be diagnosed with breast cancer at the ripe ol’ age of 26 as most of my friends and family were.

Here are a few things I’ve learned so far about what’s helpful and what isn’t when it comes to receiving support from people. Obviously, I only speak for my own experience here, but you’d probably hear a lot of similar things from other cancer patients.


1. Read/listen carefully to what we say.

Since I draw so much of my strength from writing, I turned to it immediately when I got my diagnosis–not just to talk about my feelings and experiences, but also to express what I needed from people who wanted to help. I wrote out detailed instructions and set clear boundaries. (As did my roommate, who started a Facebook group with some of my other friends and used it to coordinate support.)

Nevertheless, both of us were often swamped with questions that could easily have been answered by reading what we’d posted. People repeatedly asked for my address, gift preferences, dietary needs, and other stuff that my roommate had clearly addressed in multiple posts. It was, honestly, really frustrating. I understand that all of this is hard and that paying attention to written text can be hard and being a human is hard. But surviving the first few weeks of a cancer diagnosis is especially hard, so please make it easier on your newly-diagnosed friend by being attentive to what they’re telling you.

2. Don’t inundate us with irrelevant and overly-specific questions about gifts.

On a related note, it was pretty overwhelming when, within the first couple days of my diagnosis, comments and messages like these started pouring in: “Is there anything I can get you? Do you need hats? What color hats? What type of yarn? Do you like letters? Would it be okay to send a card? What’s your address? What kind of food do you like? Can I send cat photos?”

I 100% understand where this is coming from. People want to help, and they don’t want to help in ways that are harmful or unwanted, so they ask lots of questions about exactly what kind of help would be welcome.

But guys. I don’t care what color hat. Those first days, when I was still waiting for all my test results, I was facing the fact that I could be dying. I could find out that it’s metastatic, that I have a few months or years left, that I’m going to have to tell my 12-year-old sister that I’m fucking dying. I wanted to take these well-meaning people by the shoulders and shake them and tell them that I don’t care what color hat.

If you’re already making/doing something specific, such as knitting a hat, it’d be more helpful to ask, “Is there anything I should keep in mind when making this for you?” That’d be a good place for me to ask you to avoid Breast Cancer Pink, for instance. (Although, again–I really don’t care about stuff like that very much right now.)

Otherwise, I’d suggest directing these questions to a caregiver, such as the person’s partner(s), family, or closest friends.

3. And about those cat pictures…

I’m going to reiterate that I’m only speaking for myself here, and not for any other survivors or anyone else living with a serious illness, but boy howdy did it ever rub me the wrong way when people immediately wanted to send cat pictures following my diagnosis. Cat pictures are nice for when you’ve had a stressful day at work or you need to forget about political news for a bit. “Sorry to hear about the cancer, here’s my cute cat” doesn’t really work.

4. No medical advice. None. Nada.

In my opinion, giving unsolicited medical advice when you are not that person’s doctor is always wrong, for a variety of reasons. However, it’s especially wrong when the medical condition in question is both deadly and very poorly understood by most laypeople. (Seriously–I’ve learned a ton about cancer these past few weeks that I never would’ve known otherwise.)

For example, someone literally tried to tell me that there’s doubt that a prophylactic mastectomy is effective for preventing breast cancer. But according to all of my doctors and all of the information I could find on reliable websites, people with a genetic predisposition to breast cancer can reduce their risk by 90% if they have that surgery. Because I have the BRCA-1 gene mutation, my risk of developing a second breast cancer within 15 years is otherwise 33%. (My lifetime risk of developing breast cancer at all was 55-65%. So yeah, I wish I’d known that and gotten the surgery years ago.)

So please do not give me advice that could literally kill me. Thanks.

5. Keep talking to us about your own life and problems.

A lot of times when someone gets diagnosed with a serious illness, people around them start feeling like they shouldn’t talk about their own (comparatively) less severe issues. Please do talk about them! I mean, obviously take your cues from the seriously ill person, but in my experience, it’s comforting to listen to friends vent about work or people in their lives or whatever. Checking in before/while dumping heavy stuff on someone is always a good idea whether they have cancer or not.

6. Resist the urge to relate our struggles to yours.

This is often an issue when someone’s talking about a shitty thing they’re going through, but when it comes to stuff like cancer, it’s especially relevant. The morning sickness you had during pregnancy is not like the nausea folks have during chemo. Your choosing to shave your head for aesthetic reasons is not like having your hair fall out because cells in your body are being destroyed. Choosing to get breast implants is not at all like having to have a mastectomy and reconstruction. And so on.

Sometimes, folks with other serious illnesses besides cancer do have very relatable experiences. (For instance, I met someone who has to have chemo because of a totally non-cancer condition.) Otherwise, just center the experiences of the person who’s going through the serious illness.

Note that I do not mean it’s wrong to simply say, “Ugh, yeah, I have nausea every day from my psych meds” or “That sounds a lot like me when I was pregnant.” Of course some cancer-related experiences are going to resemble some non-cancer related experiences.

Where comparisons fall flat is when you’re trying to comfort or reassure someone, or when they’re trying to talk about their cancer and you keep changing the subject to your pregnancy. If I’m terrified of reconstruction surgery, you’re not going to be able to reassure me by reminding me that some people (whose choices I respect but completely do not understand, by the way) choose to get implants, because that experience is going to be completely different.

7. Remember that most side effects of chemo are invisible.

Cancer patients often talk about the dreaded “chemo brain,” which is the shitty mix of mental fog, fatigue, and executive dysfunction that often happens during chemo. Just because we’re not vomiting or bedridden doesn’t mean we’re not experiencing some pretty serious side effects.

For me, this means having a lot of trouble with time management. Sometimes time seems to pass way more quickly or slowly than I would expect. I have a very hard time processing things like “when do I need to start getting ready in order to leave early enough to arrive at Thing on time.” I’m pretty much late to everything these days. The fact that I’m often so tired that standing up feels impossible doesn’t help.

I try not to keep anyone waiting for too long, but it helps a lot when people are able to be flexible.

8. Look for the less obvious ways to help.

When someone gets diagnosed with cancer, people usually gravitate towards the most obvious, visible ways to help: making meals, giving gifts, and so on. I also got tons of invitations to come hang out at someone’s place. However, the most helpful thing for anyone whose condition involves fatigue and needing to sleep, eat, or take medication on very short notice is offers to hang out near my home, not yours.

Even when people offer rides (which is very helpful, by the way), there’s always the potential discomfort of having forgotten my anti-nausea meds at home or desperately needing a nap or getting hungry in someone’s house and not knowing what to do or running out of tissues. I love offers to go to a restaurant or coffee shop near my place, or hang out at home.

A good question to ask someone is, “Is there anything you need that folks haven’t been offering to help with?”

9. Please don’t take it personally if we don’t take you up on your offers to put us in touch with your cousin/grandmother/friend-of-a-friend who has/had cancer.

Sometimes it’s helpful to talk to people who’ve been through it; sometimes it’s not. Regardless, that’s why support groups exist, as well as tons of one-on-one peer support services. I’m not really comfortable with calling a total stranger on the phone to talk about cancer, especially when it’s someone at least twice my age (which it often is).

Every cancer is unique, but the experience of young breast cancer patients in particular is often quite different from that of older people, because ours tends to be more aggressive and difficult to treat, and we tend to have less material/social resources and support than older survivors do. Many of the older survivors I talked to told me quite cheerily that they simply had surgery and were back to their normal lives soon after. That’s not at all how it’s going to be for me–I have to have chemo, then surgery, then possibly radiation, and then ten years of hormone blockers, plus being constantly vigilant for symptoms of ovarian cancer, which I’m also at increased risk for and which has no reliable early detection methods. Not super helpful to talk to people who didn’t have to deal with most of that.

10. Mind the boundaries.

There’s something about getting diagnosed with cancer, and talking about it openly, that makes some people assume that our relationship is much closer than it really is. It was weird to have people I barely know telling me that they hope I visit their city so we can hang out, or to offer help with stuff that’s honestly really personal and not at all a part of my life that I’d normally share with them. (For instance: decisions about my breasts and what to do with them.)

It’s true that there are certain boundaries that come down out of necessity when you’re going through a serious illness; for instance, my parents now know a lot more about my health, body, and lifestyle than they would’ve known otherwise. But that’s because my parents are my primary caregivers. They need to know that stuff in order to take care of me. You, random person who added me on Facebook because you like my writing, are not my primary caregiver. If you wouldn’t normally talk to me about my breasts or expect me to include you in my travel plans, don’t do it now, either.

11. Unless otherwise stated, assume that your gift/gesture is received and welcome.

In most situations, it’s rude not to reply with a “thank you” when you’ve received a gift from someone. When you’re newly diagnosed with cancer, it’s not. When people message me with “Did you ever get my package?” or “So was that hat I sent a good fit?”, the message I get is that I should’ve made sure to reach out and let them know that I received the gift and that I like it (whether or not I actually did like it), even when my days are a messy jumble of medical tests and treatments.

Personally, I take gratitude very seriously and I’m keeping a notebook of everything kind anyone does for me so that I can properly thank them later. (The key word there is LATER: when I’m not in the middle of chemo, probably.) But this isn’t something you should expect of your friend with cancer. This isn’t a normal situation, so normal rules of etiquette don’t apply. If you know that you wouldn’t be happy to give this gift or offer this help without the validation of a personalized thank you, don’t give it.

12. Assume that other people are doing what you’re doing. 

While that’s not always true, it can help you avoid doing things that are going to frustrate your friend or make their life more stressful. The previous suggestion is a good example—one person asking if I’ve received their package may be okay, but multiple people asking gets really overwhelming. One person asking for detailed instructions on how to knit me a hat isn’t that big of a deal, but providing multiple people with instructions for multiple types of knitted items is way too much.

“What if everyone behaved the way I’m behaving” is a great question to ask ourselves in many situations because it’s a reminder that it’s not just about you, and your gift, and your need to be helpful, and your anxiety that your gift wasn’t appreciated enough.

For me, there’s no such thing as too many cards and letters, or too many texts that say “No need to respond to this, but I love you and I hope your treatment is going okay.”

13. Decide what kind of support YOU want to offer, and offer it.

It’s a cliche by now that “Let me know if you need anything!” isn’t a super helpful thing to say (not that I mind it—I just take it literally), but the way to really grok that is to understand that most struggling people would rather you help in ways that YOU want to help rather than turning yourself into a put-upon martyr at our beck and call. That’s not a dynamic healthy people like.

Ask yourself what kind of help would bring you joy to offer, and what kind of help you’re good at giving. Do you like mindless household tasks? Cooking? Taking care of pets and plants? Organizing fun distractions? Being a workout buddy? Figure it out, and then offer that.

Of course, there are some tasks that need to be done even if nobody particularly loves doing them. (Some horrific things I’ve heard about post-surgery recovery come to mind.) But these tasks are for caregivers, not concerned friends. My parents will be the ones to make the noble sacrifice here, not you.

14. Comfort in, dump out.

It’s a classic for a reason.


As I’ve reflected more on what I find helpful and what I don’t when it comes to receiving support from people, it occurs to me that the most irritating, upsetting, or tonedeaf responses are also the ones that seem like they’re covering up something else. I don’t want to presume and play psychoanalyst with people (that’s from 8 to 5 and with pay only), but sometimes it’s pretty clear that the person I’m interacting with 1) doesn’t know how to react when a friend has cancer, 2) realizes on some level that they don’t know, and 3) is panicking about this.

“Can I knit you something? Do you need hats? What are your favorite colors? Do you care which type of yarn?” often seems to be masking “I’m worried about you and I have no idea what I could possibly do to help.” “So did you get my package???” is maybe actually “I sent you this thing without asking first if you needed it and now I’m feeling awkward because maybe you didn’t need it or want it.” Unsolicited medical advice often means, “Cancer terrifies me and I’m trying to believe that if I do everything right it will never get me like it did you.”

Again–not necessarily. Not all the time.

But the further I get into this whole ordeal the more it feels like honesty and openness is the way to go–just like it is in almost every other situation we find ourselves in. I would rather hear that you care about me than answer a dozen questions about exactly how you can help. I would rather one silly card with poor handwriting than The One Perfect Gift That Will Make All This Go Away–because that doesn’t exist.

Send the card. Offer the practical household help. We’re all gonna be okay.


Two great books for those interested in learning more: There’s No Good Card For This and The Art of Comforting.


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So Your Friend’s Just Been Diagnosed With Cancer

Save the People, Not the Boobies: The Ethics of Breast Cancer Awareness

Few ad campaigns make me as misanthropic as the breast cancer awareness ones I’ve been seeing at an especially high volume for the past month:

There’s also this video (NSFW).

I hate these campaigns for many reasons. First of all, they make breast cancer all about boobs. Yes, it has “breast” in the name, but reducing an illness as complex and life-shattering as breast cancer into a cutesy “save the boobies!” campaign seems callous and inappropriate.

I’m not sure everyone would even agree that the prospect of losing your breasts is the worst thing about breast cancer, and yet that’s what these campaigns almost universally target. It’s not the “boobies” or “ta-tas” that need to be saved–it’s the human beings who have breast cancer.

It’s even worse when the campaigns are created by and/or targeted at men and involve that hint-hint-nudge-nudge assumption that men should care about breast cancer because men love tits. Never mind that men can get breast cancer too, and never mind that men care about breast cancer not (just) because they care about boobs, but also because they care about their friends, girlfriends, wives, mothers, sisters, daughters, and etc. who might get breast cancer, or who already have.

Campaigns like these also completely ignore women who have chosen (or been forced to) undergo mastectomies. If breast cancer research and awareness is all about “saving the boobies,” does losing your breasts mean you’ve lost the fight?

This preoccupation with breasts is probably what inspires awful ads like this one by the Cancer Patients Aid Association, an Indian NGO:

The text at the bottom reads, “One out of every eight women develops breast cancer in her lifetime. Early detection helps recovery. Get yourself examined before it’s too late.” So there you have it. If you get a mastectomy, you’re “making yourself ugly.”

This is all to say nothing of Susan G. Komen for the Cure, the hypocrisy and reactionism of which should by now be well-known. (Incidentally, the former Komen executive who was responsible for that move was not content with merely that; she just had to write a book-length screed against Planned Parenthood, as well.) This unethical organization seems to be the beneficiary of most (if not all) of the sexualized ads I’ve seen. I still refuse to give them a single cent, which is difficult given how easy it is to accidentally pick up one of those pink-ribbon-branded products at the grocery store.

On the bright side, this is a great opportunity to explain what feminists mean when we prattle on about “objectification” and “sexualization,” which are closely related concepts that often (but not always) occur together. Objectification is the reduction of a person to their body parts (usually the sexual ones; hence the frequent co-occurence of objectification and sexualization). An advertisement that objectifies women might show, for instance, a single female leg in front of a flashy car, or a woman lying in a martini glass–literally like an object to be consumed. Sometimes men are objectified too, but that seems to be rarer. Ads that objectify people often don’t show their faces (or eyes), thus making them seem less like people and more like bodies.

Sexualization, meanwhile, is when a person (again, usually a woman) is represented in such a way as to arouse the viewer or otherwise connote sex when the actual purpose of the representation has nothing to do with sex at all. You wouldn’t call pornography “sexualization” because the purpose of pornography is to depict sexual acts and to be arousing. But when an advertisement designed to sell cars or alcohol–or solicit donations for breast cancer research–portrays women in a sexual way, that’s sexualization.

The objectification and sexualization of women in the media has a great deal of negative effects, both on an individual level–for the people who view them–and on a cultural level. Check out the work of Jean Kilbourne if that interests you.

However, I am not a marketing expert. If I were, and if I were charged with designing an ad campaign that elicits as much attention and donations for breast cancer research as possible, there’s a good chance I would feel compelled to create an ad like this, because there’s a good chance that this is the kind of ad that works best.

Hence the misanthropy I mentioned earlier. Marketing people know what they’re doing. If this is really the best way to get people to pay attention to this important cause, I would say that not using ads like these is even more unethical than using them–at least until we shift our culture enough that we don’t need them anymore. But that still means that we’re choosing the lesser of two evils. I would rather more money went to breast cancer research than less, but I would also rather we stopped reducing women to their erogenous zones in our media.

After all, I don’t agree with this rubbish that men are “programmed” or “hardwired” by biology to be obsessed with breasts, at least not to the level that our society seems to think they are. As I already discussed when I wrote about public breastfeeding, the sexualization of breasts is not universal to all cultures and time periods. Even if “sex sells,” breasts don’t necessarily have to always be part of “sex,” and I think it would be beneficial to our society if they were not.

For the record, whether straight men’s love of boobs is entirely biological or not, I don’t think there’s anything wrong with it, as long as it doesn’t infringe upon public policy or trivialize serious illnesses. Besides, you can totally be an awesome (male) feminist and a boob enthusiast at the same time.

Edit: Here’s a great article that basically makes my point for me.

Save the People, Not the Boobies: The Ethics of Breast Cancer Awareness

The Complete Idiot's Guide to Breast Cancer Awareness

If you have ever seen a bunch of women posting Facebook statuses with a random color, or a location where they “like it,” and felt a mix of confusion and frustration, you are not alone.

These memes are part of an effort for breast cancer “awareness,” a word that I use cynically here and only in quotation marks. The color meme referred to women’s bra color, and the location one referred to where they like to put their purses. Of course, they made it sound sexual to attract more attention: “X likes it by the bed”, “Y likes it in the closet,” etc.

Now, an acquiantance of mine (who also happens to be the Director of Health Promotion and Wellness at Northwestern University, and therefore isn’t entirely ignorant about these things) has reported that this stupid trend still has not died.

Perhaps even less sensically, the latest iteration of this meme is people posting stuff like “is going to New York for five months” or “is going to Las Vegas for twelve months,” and this, too, is supposed to elicit friends’ queries and be met with the response that it’s for breast cancer “awareness.”

As anyone with even a modicum of critical thinking skills can tell you, such a status, when finally deciphered, tells you exactly one thing: “There is a thing called breast cancer and you should know about it.”

Yes, yes there is. But could we finally get beyond that?

For instance, here are some actual facts about breast cancer:

If you’d like to do some actual good, why not spread this information around?

Besides that, here are some other ways you can help:

  • Volunteer to provide support for people battling breast cancer. (This is even easier if you know of such a person. You can help by driving them to doctor’s appointments, making them meals if they’re too tired, babysitting their kids, or just being there to listen.)
  • Donate to charities that provide such support, or to organizations that fund research on breast cancer. Here are some to get your started: Susan G. Komen for the Cure, the National Breast Cancer Foundation, and the National Breast Cancer Coalition. With a quick Google search, you could find local charities, charities that cater towards a particular demographic that you belong to, and so on.
  • If you want to go beyond simply giving money, participate in charities’ fundraising events, such as Susan G. Komen’s Race for the Cure. That way you get to raise money while meeting other people who care and physically showing your support for survivors and people battling breast cancer.
  • If you’re politically liberal, be an activist for government initiatives that fund cancer research, education initiatives, support for cancer patients, expanded insurance coverage, etc. One good place to start: ask your representative to support H.R. 3067, the Accelerating the End of Breast Cancer Act of 2011, which proposes an initiative to end breast cancer by 2020.
  • If you’re studying medicine or biomedical engineering, consider making cancer research your focus. Or work as a research assistant in a lab that studies cancer.
  • Buy products from companies that donate to breast cancer research (but beware of pinkwashing).
  • Similarly, if you happen to own a business or want to start one (and I know many of you Northwestern students do), consider donating a percentage of your profits to breast cancer research.
  • If you’re going into journalism and you’re interested in health, consider writing about breast cancer. Not everyone has enough knowledge to decipher academic articles; you can be the one who makes that information accessible to those who need it.

As you can see, some of these require your time and money. Others do not. The few seconds that it takes you to type your stupid status could be better spent posting a link to an important recent article about breast cancer.

And now, I get it. Cancer is a terrifying thing. The amount of information available about it could fill books upon books, and some of it is constantly going obsolete or being revised. Even I felt a bit overwhelmed just looking at the few websites I looked at to research this article.
I also get that when your friends are posting oh-so-funny things on Facebook, you want to join in the fun. Trust me, I was in middle school once, I know.

But I have some unfortunate news for some of you: neither I, nor breast cancer survivors, nor families of breast cancer victims give a flying fuck what color your bra is or where you like to put your purse, cutesy sexual innuendo notwithstanding.

If you’re old enough to make sexual innuendo, you’re old enough to educate yourself and others about breast cancer (and, for that matter, anything else you think people should be educated about). Let’s stop selling ourselves short here.

*edit* Another reason I just thought of to hate these memes–they are generally restricted to women only, and women aren’t “supposed” to tell men what they mean, thus constructing breast cancer as a “girl thing.” Not only do men witness their friends, girlfriends, wives, mothers, daughters, sisters, etc. fighting breast cancer, but some men actually get breast cancer, so it’s not only a women’s problem.

Anyway, there is enough of a stigma placed on men who get breast cancer without its promotion through this meme.

Update (2/2/2012): In case anyone’s going through my archives and reading old posts, let it be known that I officially withdraw my support for the Susan G. Komen Foundation in light of its defunding of Planned Parenthood.

The Complete Idiot's Guide to Breast Cancer Awareness