The Lived Experience

I read a blog post recently suggesting that those of us with metastatic breast cancer are unfairly protesting the lack of research dollars spent on research on metastatic breast cancer. The author talked about the improvements in lifespan for people with metastatic breast cancer than we were 10 years ago, and thus we should be glad about that.

The problem is, the actual data is that the median survival from diagnosis with metastatic breast cancer has barely improved, and is still only about 3 years. Which is why my immediate reaction to the article was “excuse me for not being excited that my kids will be traumatized by my death a few months later than if we were going through this 10 years ago.” I’m sorry, cancer research community–I know you’re trying hard, and I appreciate your efforts. But it’s not enough. It’s just not nearly enough. You need more resources, or I am going to die of this disease.

I get that it SEEMS like people are living a lot longer with metastatic breast cancer. Because, there ARE some women who are living with their disease for 10 or 20 years, and those are the women you meet who have metastatic breast cancer. But the reason those are the women you meet? Yeah, that’s because the other women are dead. Let that sink in for a moment, and then tell me science is doing enough.

I was watching MSNBC the other night, and Joy Reid was on talking about the case of a black teen who was the youngest person ever executed in America, and how a judge exonerated him this year, decades after his execution. And she started talking about race in America today, and how there are many people in the white community who look at how far we’ve come from, and say, “You should be happy about that.” But for the black community, their lived experience is how they see race relations in America, and their lived experience of racism is still pretty awful. That’s why they are marching in the streets.

My lived experience with cancer is this: short of being hit by a bus (which isn’t appealing), I am going to die of this disease. I have to wake up every day knowing that unless there is a miracle scientific breakthrough, my children will be left without a mother before they reach adulthood. I will not live to see my grandchildren. And people have the gall to say that we’re doing enough? Because my life expectancy has improved by a few months vs. women diagnosed 20 years ago?

When someone is struggling and they are begging for help, and you say, “But it’s so much better now than it used to be, you should be glad about that,” please don’t be surprised when their reaction is an angry one. Don’t be surprised when they start a movement like ACT UP, or Occupy, or they march in the streets demanding justice for Trayvon. That anger comes from their lived experience, and their real pain that is happening now. Suggesting things are better than they used to be means ignoring people who are suffering now, and no good can come from that.


Warning: this post might piss you off. Because it might be about you.

My favorite new-ish word that has been invented lately is “mansplaining.” This would be when someone, often a man, explains something to someone, usually a woman, that she already understands and knows more about than the explainer. As a lawyer, I found this happening to me a lot. Once in a while, a woman lawyer would mansplain to me, but most often it was a male lawyer doing the mansplaining. The times I found it the most grating during my career as a civil rights lawyer were when a mansplainer lectured me about about women’s rights. Funny how those mansplainers never noticed me rolling my eyes.

Now that I am out of the world of the practicing lawyer, the mansplaining I experience is no longer about the law. It’s primarily about cancer. And much more so than when I was a practicing lawyer, it comes from women as much as men, to the point that I feel it needs a new word to describe it: cancersplaining.

Let me give a few examples.

“I know just how you must feel. My aunt had breast cancer, so I had the BRCA testing done. Luckily it came back negative. Have you heard of BRCA?”

“I just read about this diet that is supposed to fight cancer, you should try it.”

“Oh, you have cancer? I just read about this new cancer drug that’s showing promise in mice.”

“Mammograms are so scary. I was so nervous going in for mine. But early screening saves lives. The data is so compelling, isn’t it?”

Here is what I hear when someone says these things:


The thing with splaining of all types is that it exposes to the listener just how little the speaker actually knows about the topic. For example, if you knew anything about cancer, you wouldn’t talk to someone with cancer about some drug showing promise in mice, because that drug won’t be on the market for humans for years, if ever. And loads of drugs that show promise in mice turn out to be useless in people. So sure, cancersplainer, please go on and on about some treatment that won’t be available until I am dead, if it ever becomes available at all. I am a pretty polite person, but internally, whenever someone tells me about some study they read about, I am rolling my eyes.

Also, as many as 30% of women who get early stage breast cancer will go on to get metastatic cancer. Every time I walk past that fucking “early screening saves lives” poster at the mammogram clinic that’s on the way to my oncologist’s office, I want to scream. No, cancersplainer, the data is not compelling, actually. It’s fucking depressing.

Likewise with people who claim to know what cancer is like when they haven’t had it. The emotions involved in having cancer are extremely complex and individual. Saying “I know how you feel” is a fingernails on chalkboard phrase. That is the worst kind of cancersplaining to me. In the words of Robin Williams in Good Will Hunting, “You’re an orphan, right? You think I know the first thing about how hard your life has been, how you feel, who you are, because I read Oliver Twist? Does that encapsulate you?” That you read The Fault In Our Stars or saw Terms of Endearment does not mean you know what this is like for me.

Clearly I am worked up here, but let me pause for a moment. Are cancersplainers or other kinds of splainers bad people? No, of course not–usually they are trying to be helpful or to relate to my experience. They’re just really really shitty at it, and their behavior is disrespectful. It is disrespectful to lecture to people, and even more so, to lecture to people who have more experience with a subject than you do. Especially with a topic as profound as having cancer.

What is a better approach? For me, asking questions is what I prefer. I like it when someone asks “What is your treatment regimen like?” instead of telling me “I read about XYZ treatment regimen, you should ask your doctor about it.” Another one I like is “How are you feeling” rather than “You look great, you must be feeling well.” Because, I may look OK, but my emotions may be in the shitter, and maybe I’d like to talk about it. And maybe I don’t want to talk about it, but giving me space to, instead of telling me how I “must” feel, makes me feel more respected.

That said, I can’t presume to speak for all cancer patients in the world. I can only speak for me and what my experience is. So, maybe ask your friends with cancer how they would like to be spoken to. But I am going to crawl out on a limb and guess that they don’t want to be cancersplained to either. And I hope they will chime in here in the comments.

Beth’s Classic Film Club: Imitation of Life

You know, race is a pretty fucked up subject. Like, here is this thing that we invented as a species, that has no basis in science, and yet, we use it as an excuse to literally rape and murder and otherwise subjugate people. It holds so much power over us. And we think of ourselves now as living in a post-racial utopia for a minute and then bam, another unarmed black kid gets killed by a scared white dude. What the fuck, man.

You know who else thought they were handling race issues just fine but actually weren’t? The people in our next film, Imitation of Life. Which version, you ask–the one from the 1930’s with Claudette Colbert or the one from the 50’s with Lana Turner? Both, of course. They have the same basic plot: poor single white mom meets poor single black mom. White mom hires black mom as her servant. White mom gets rich and has arguments with her grown daughter over a man they both love. Black mom’s daughter is light skinned and passes as white, freaking out her black mom.

The whole plot is a shitshow of racial non-transcendence that is designed to make you feel totally skeeved out. You should not be watching this film to have a good time. You should be watching this film and saying “Seriously, did that actually just happen?” Yes, yes it did. And you know what’s truly awful? Most of that could easily still happen today. What race do we most closely associate with housekeepers and nannies today? Do their children struggle to have pride in their cultural heritage in the face of a society that relentlessly demands assimilation in order to succeed financially? It’s still happening, folks.

I personally prefer the Claudette Colbert version because it adds a layer of exploitation of the black woman that I think makes the film even more button-pushing to modern audiences. Colbert’s character gets rich by selling a product her servant invented and with her servant’s picture on it (think Aunt Jemima) and the servant only gets 20% of the profits. And of course, the servant keeps being a servant even when the company is a big success. What. The. Fuck.

Then again, I really love the 1950’s melodrama genre, and the Lana Turner version is a prime example of it. I mean, Turner is the queen of the 50’s melodrama. You need an emotionally damaged mom for a tearjerker? Call Lana Turner. (In real life, she was a good friend of Ava Gardner, who is my spirit animal.) And Susan Kohner, who plays the light skinned daughter, is amazing in this film. Did you know that Kohner’s mom was Mexican and her dad was Bohemian? So she’s literally a mixed-race woman portraying a different mixed-race woman passing as white.

Honestly? Rent both of them, and decide which one you prefer. I think they’re both movies that will make you feel and think things. Let me know which version you prefer in the comments!

I had an awesome dream

This post is a total non-sequeter, but I had the coolest dream the other night when I was all chemo’d out. I was at the Oscars, except, they were honoring TV shows, not movies, but it was definitely Oscars people were getting. I wonder if that’s my brain’s commentary on how TV is becoming way more interesting and with better story-telling than movies?

Anyway, at the start of the event, there were tables like at the Golden Globes, like with people eating dinner and getting drunk, but halfway through it turned into theater style seating. And my seat was next to Meryl Streep, who I ADORE. She was looking gorgeous in a red corset gown and she was eating a bag of potato chips. The producers of the show could hear her bag rustling and were like “WHO THE FUCK IS EATING POTATO CHIPS DIDN’T WE JUST FEED YOU DINNER THAT BAG IS TOO LOUD” so she surreptitiously dumped the chips into a bowl under her seat and kept sneakily eating them. And I turned to her and quietly sang “Did you ever know that your potato chips are my hero?”

And without missing a beat she said “They are the wind beneath your wings. You want some?” And then we were best friends and we drank wine and laughed at the reality TV stars that were getting awards while she anxiously waited to hear if her project was going to win…but I woke up before we found out.

Meryl, if you like wine and potato chips, as a scene in Postcards from the Edge suggested you might, and cheesy references to Bette Middler songs, look me up because I think we could be kindred spirits. Also, I really hope you win your TV Oscar someday.

Grown Up Movies for Kids: Singing in the Rain

I suppose this could also be a Beth’s Classic Film Club selection, but since we’ve already had a Gene Kelly movie, and since The Boy freaking LOVED it, I’m adding Singing in the Rain to my selection of Grown Up Movies for Kids. What’s that? You’ve never seen it? Do you live under a rock? Are you named Jennifer and do you write Real Life Parenting? Please just go find yourself a copy, you’ll be glad you did.

First, let’s talk about swearing, nudity and violence. None, none, and hardly any. This was the 50’s, they didn’t do nudity or swearing, and violence wasn’t in as many movies, and when it’s there, it wasn’t gory. The violence in Singing in the Rain consists of Gene Kelly’s character being a stunt man for a while, so he gets punched and crashes a plane. Oh, and at one point, a character gets hit in the face by a pie. Is that level of violence a problem for you? Then you’re probably not reading my blog anyway.

Singing in the Rain has inspired The Boy to pursue a career as a stunt man. And not just because Gene Kelly’s character is a stunt man, but because of the iconic dance number by Donald O’Connor, Make ‘Em Laugh. After watching this movie, The Boy spent the rest of the evening doing that spin-around-run-on-the-floor thing that Donald O’Connor does during that song, and also falling backwards onto the sofa. It was all I could do to convince him not to try more of the movies from that number because we were going to need some mats to keep him from injuring himself. We had to have a talk about Donald O’Conner being an expert and that his moves were something The Boy shouldn’t try at home. (Thank you, Mythbusters, for making this a phrase that The Boy is familiar with.)

Both kids liked the singing and dancing in this one, and there is plenty of it. It feels like you can’t go more than a couple of minutes through most of the movie without there being a song. And the technicolor is particularly eye-catching for kids and helps keep their attention, kind of like a cartoon does. I will say, though, that the “her voice sounds awful, she can’t be in a talking picture” plot didn’t make a ton of sense to them. Like, I think they didn’t understand about what a silent film was like. I think we need to expose them to some silent films for them to fully understand. Maybe The Golden Eaglet.

Singing in the Rain is part of the cannon of American cinema–it’s a film that everyone should see, and luckily, it’s one that kids can love as much as adults. So, if you haven’t watched it, or if you haven’t watched it with your kids, I hope you will–and post what they think of the film in the comments!

Nose Monkeys

This is going to be an adorable post about my adorable son and his adorableness. If you’re the type of scrooge who hates hearing stories about how other people’s kids are adorable, I mean, I am obviously not about judging people, but seriously you probably shouldn’t have kids. Unless you are a fan of eating crow? Because when you have kids, you will suddenly want to share their adorableness with the world. It just happens, you can’t help it.

The Hubs has been telling The Boy that there are monkeys living in his nose. The Nose Monkeys, we call them. The Boy gets that it’s a joke (I love that he is old enough now to get these kinds of jokes), and he and The Hubs will have long conversations about what the Nose Monkey is up to lately. The following is a typical conversation about the Nose Monkey.

“Hey, how is your Nose Monkey doing?”
“Good, Dad.”
“Have you talked to him lately?”
“We’ll, I did put my finger up there.”
“He didn’t bite it, did he?”
“No, he eats boogers, not fingers.”

I asked The Boy to tell me more about his Nose Monkey. Here’s what The Boy said.

“He’s crazy.”
“He crawls on the booger vines in my nose.”
“I have 100 nose monkeys in there, but MINE is the one who hits me when I stick my finger up there, because he is trying to protect the nose monkey king who is in the back. He has a booger spear that he puts boogers on.”
“I beat up my Nose Monkey a lot. With my nose. Like, I squish my nose and he gets squished. I do it more in the winter because that’s when they’re really active.”
“He tries to get in Lambie’s ear, but he can’t because she’s a stuffed animal.”

Actually, strike that, this is not a post about my son’s adorableness. This is a post about my son’s very bizarre fantasy life. 6 year olds are FASCINATING, don’t you think?

On Fatherhood

When I launched this blog and shared it on Facebook for the first time, one of my friends asked where’s the stuff on dads. And you know what? From what I can see, dads have to deal with a lot of this crap too. The Hubs will definitely tell you that he feels a lot of pressure as a dad, especially as a working dad, and he gets exhausted and worries and feels like a failure sometimes, just like I do.

When I was pregnant with The Boy, The Hubs and I talked a bit about whether he should be circumcised. Circumcision is one of those Cult of Perfect Motherhood hot topics. People argue passionately about it on both sides of the issue and there is a lot of Judgy McJudgersoning around whatever choice you make. And I gotta be honest, I really didn’t care whether The Boy got circumcised or not. I know as a mom you’re supposed to be deeply engrossed in every decision about your child’s health and future and whatever, and you’d think I’d be all worked up about such an intimate decision, but I just wasn’t. Because, I don’t have a penis, and I have no frame of reference for what having a circumcised vs. non-circumcised penis is like. I just don’t, and so I couldn’t get all worked up over what was the right choice to make. So, I told The Hubs, “You’ve got a penis, you’re the expert in this area. I’m leaving it up to you to decide.” And he did.

And that’s how I feel about me writing about dads. I’m not a dad, and I can’t write a dad’s experience because I’m not having a dad’s experience. I’m having a mom’s experience. I wouldn’t presume to know what being a dad is like, and if I wrote about it, I think I’d come off sounding like I had no idea what I was talking about. Because I don’t. It’d be like when dudes mansplain–it’d be momsplaining, I guess. And any kind of ‘splaining is the opposite of cool. So, I told my friend (who is as sarcastic as I am) to write his own damn blog. And I hope he will, because he’s funny and smart.