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
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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