More or Less

Lately I’ve been reading a lot of stuff by moms that makes me feel…uncomfortable. I keep wondering why I feel this way. And I realized that it’s because I need a refresher on one of the key concepts that helps free us all from The Cult.

Did you know even I need a refresher now and then? It’s true. When you have to live surrounded by people who have drunk the kool aid, it’s easy to think “Maybe I’m the one who’s crazy.” But no, it’s not me.

Let me back up a minute. What is it I’ve been reading that bothered me? I’ve been branching outside of my usual circle of awesome bloggers I follow–the ladies from The Book, and some other bloggers I really admire. So, what I’ve been coming across lately is a lot of stuff about feeling like you’re not doing enough as a mom. That the kids aren’t perfect; that the house isn’t perfect; that the family photos aren’t perfect. 

I keep reading these kinds of things and thinking “I do less and less all the time as a mom. Fatigue sets in by 3PM every day. I can’t even get up with them some mornings because I’m too tired. Am I even a mom anymore? I don’t have a breast anymore. My hair is still so short, it looks like a guy’s. Am I even a woman anymore?” That shit hurts. Those feelings are right under the surface, because as treatment goes on and we add new drugs to my cocktail, the side effects get worse.

So I would quickly click away from their words. And I would feel more and more isolated. And more and more like a failure. 

Until one night, I thought, “It’s not you. It’s them.”

It seems to be deeply embedded in the American psyche to be constantly striving for more. Bigger house, higher test scores, more trophies. Nothing is good enough. Nobody is doing good enough, not when there’s room to do better. And we lie to ourselves and say that more is possible, even when it’s clearly not. Harvard is hovering off in the distances if on,y you sign Little Sally up for enough sports teams and community service experiences and foreign language classes.

Well, I don’t want that kind of more. I don’t want a life spent running around like a chicken with my head cut off. I don’t see how that life would make me happy.

I’d settle for the more I had before cancer.  More energy. More years to come. More smiles. But I can’t have even that kind of more. I have less now.

Does that make me less of a good mom? Does my less make you say “She’s a shitty parent”? Are you an asshole? No, of course not. It makes you say “She’s doing the best she can, and her kids are turning out fine.” You say “Of course you’re a woman, look at how feminine Sinead O’Connor was with that bald head. And that chick from the first Star Trek movie in the 70’s, wow she was hot.” 

I think the real problem is this: we look at our lives, and we say, “I’m unhappy. Something must be wrong with me. Why can’t I seem to make this work?” But it’s not us. It’s the pressures the world is putting on us. It’s the feeling like you’re failing, but the only thing you’re failing at is meeting a completely stupid expectation that won’t make you happy even if you meet it. It’s that we’re not looking at our lives and deciding “These are the things that make me happy–what do I do to achieve them?” Instead, we’re saying “I think I’m supposed to do these things, because I see others doing them, and I can’t seems to do them. I am a failure.”

No. No more. Today is the day I stop looking at other families and judging my parenting by their actions. Instead, I will look at what is important to me, and what my values are, and what my limitations are, and choose my actions accordingly. If I’m too tired to make dinner, and too tired to fold clothes, I will remind myself that I value cuddles with my kids over a fresh made meal and unwrinkled shirts. If five nights a week practice doesn’t work for our family’s schedule, we’ll pick an activity that does work for us. If other families do it differently, it doesn’t matter. They do what works for them, and we’ll do what works for us, and it’s all good. 

I won’t keep aiming for more. I will be happy with less, because my less will consist of what is important.


You guys!!! Tomorrow is book launch day for I STILL Just Want To Pee Alone! I’m completely freaking out! That means that you can order a copy from Amazon! It also means that book signings are coming!

If you live in the Seattle area and you want a signed copy of the book, well, you’re in luck! I’ll be speaking at this year’s Taste of MamaCon, which happens on April 4 at Verity Credit Union HQ. It’s free, but you need a ticket, which you can get here. I’ll have a table there where you can buy a copy of the book if you haven’t already, and I’ll be signing books there too, along with the amazing Rebecca Gallagher.

Can’t make April 4? No worries, because we’re also doing an event we’re calling Garden Party Book Club–it’s a book signing/cocktails/jazz event at Sole Repair on Capitol Hill on May 4. Did I say jazz event? I sure did–the amazing Emily Asher’s Garden Party is coming back into town and they’re playing a show at our book signing! Or, we’re having a book signing at their show? Either way, tickets are $15 and are available at Brown Paper Tickets. I know it’s a weeknight, but don’t worry, we’re starting at 6:30, because we’re old ladies and we can’t stay up late. Rebecca will be there too, as will the awesome Tracy DeBlois, and I’ll be wearing an incredible ensemble styled for me by the amazing Dana of dMarie Vintage. Will I be sipping a cocktail while wearing vintage purple suede gloves? You bet your sweet ass I will. I might even swing dance. BAM.

Can’t make either of those? No worries, because we’re also going to be at MamaCon on May 15, which is the weekend after Mother’s Day! Rebecca, Tracy, and the stupendous Michelle Back will all be there, because we’re the Friday night entertainment. We’ll each be reading something funny from our blogs, and then we’ll be selling and signing books. The Friday night festivities are free, but if you only come for Friday night, you’re really missing out on the awesomeness that is MamaCon. The speakers on Saturday are going to be amazing, plus you get free spa treatments with your ticket price! Heck, there’s even going to be a dance party Saturday night. A DANCE PARTY. Seriously, you guys, just go get your tickets already, would you?

And if for some reason none of that works for you, well heck, drop me a line and I’ll see if I can connect with you. Got a book club? I’ll come to it. Your PTA board need presents? I’ll come to your meeting and sign books there. I’m that committed to this book. It’s filled with amazing writers and I’m incredibly proud to be a part of it.

Extreme Couponing: Copay Edition

Have you guys ever watched that show Extreme Couponing? It shows people who are so good at working the coupon system that they are able to go to the store and buy like 40 bottles of mustard, 3 cases of toilet paper, and 50 lbs. of ground beef for like $1.25. I’m fascinated by these folks, because dude, I love a bargain, and also, I’m impressed when people know how to work a system to their advantage. It’s the lawyer in me, really. I mean, finding rules that allow us to get what we want is the main thing we lawyers do. Working the system is our skill set, and I admire anyone who also has that skill set.

I want you to keep that idea of extreme couponing and working a system in the back of your head as you read this long explainer of my health insurance’s drug coverage.

I think I’ve talked to you guys already about how my old insurance wouldn’t approve a PET scan for me, and how my oncologist’s office was going to be out-of-network starting in 2015, right? Well, now I’m on a new insurance plan, and they don’t even require preauthorization for PET scans, so now I can just have them when I need them, and my oncologist is in network and everything is sunshine and roses and I was singing the praises of my insurance.

Then I got my first insurance statement of the year, and discovered that the copay for the denosumab shot I get every month is $761.29. And for the fulvestrant shot I just started on, it’s $780.82. You read that right. Every month, my drug copays for just those two shots are over $1500, so, over 12 months, that’s over $18,000. For just two of the drugs I’m on. When I realized this, I emailed my doctor, because we’ve been having a conversation about a new drug he wants to start me on called palbociclib, but he’s been worried my copay will be insane. Neither of us realized the copay for the drugs I was already on was going to be just as insane. In the email I said, “That’s OK, I’m sure the kids will love living in our minivan.” I believe his reply was “WTF.”

Now, the way my insurance plan works is like this: you pay your premiums, and you pay copays for things, like, the copay for my PET scan was about $300, and the copay for the denosumab is $761. But once you hit the catastrophic maximum (also called an out-of-pocket maximum) for the year, they no longer charge you a copay for most things. For drugs you buy at your pharmacy, you still pay copays, and you probably still pay that $10-35 copay for doctor appointments. But for things like PET scans or radiation therapy, you’re done having to pay for them once you hit that catastrophic max.

Now, most people don’t hit their max, because most people aren’t having the quantity of expensive treatments I am. Until I got cancer, I wasn’t even sure what our catastrophic max was (it’s $6000 under our current plan for in-network providers) because we’d never even gotten close to it. For the rest of my life, though, we’ll easily hit that max every year, so it’s something I considered when shopping for an insurance plan. And before cancer, I also didn’t know what counted towards that max, or what would still cost me a copay after we hit the max. So, when I got that insurance statement saying “These drugs are gonna cost you $1500 a month” it’s fair to say that I freaked the fuck out.

Then I called my insurance company. I explained the situation and asked if I’d continue to have these copays once I hit my catastrophic max. And their answer was “Nope. As long as you’re getting that drug at your doctor’s office, you won’t have a copay anymore once you hit your max.” I was so relieved, I wanted to hug the nice customer service rep through the phone.

I emailed my oncologist and said “Stand down the panic, after I hit my max, I won’t have these copays anymore.” But by then, he’d already sounded the alarm around his clinic and his pharmacy guy called me to discuss the situation, and also what to do about the palbociclib. The pharmacy guy explained that for a lot of these drugs, there’s a coupon system (I told you we’d get back to coupons!) to help cover the costs of the copays.

See, it works like this: the drug companies realize that the copays for their fancy new name-brand, not-available-as-generic drugs are going to be sky-high, because the drugs are so expensive. That denosumab shot? My oncologist’s office bills my insurance over $6000 a shot. That’s why the copay is so high, it’s an insanely expensive drug. Now, the drug company wants me on that drug, because me on the drug makes them money, and me NOT on the drug means they make $0. So, the drug company is willing to eat the cost of my copay if it means I’ll be on the drug rather than not being on the drug, because they’re making so much money off the drug that losing the $760 of my copay only makes a tiny dent in their bottom line. Making $5200 off the drug instead of $6000 is still better than making $0, right?

So, the drug companies have coupons you can get to drop you copay to a much lower level. According to the nice pharmacy guy, for denosumab, the coupon would drop the copay to $25. You just print it off their website, and the doctor’s office handles the paperwork, and boom, your copay goes from $780 to $25. Some of them even have a “try it free” coupon, so your first dose is free.

Now, for the shots I get at my doctor’s office, I mean, it doesn’t really matter what the copay is, because once I hit my catastrophic max, it’ll be free to me anyway, and I was going to hit that max whether I had these copays or not. But here’s where it gets tricky: for drugs you buy at a pharmacy, you continue to have to pay a copay. And that new drug my doctor wants me to try, palbociclib? It’s a pill, not a shot. Which means I’ll need to buy it from a pharmacy, and the copay won’t fall under my catastrophic max. Palbociclib costs about $10,000 a month. Cue the terror.

Remember, though, that I’m a lawyer, and working a system is a skill set of mine. So I went on the drug manufacturer’s website, and low and behold, there’s a coupon on there that will drop my copay to $10 a month. And they also have a “try it free” coupon. BAM. That’s some pretty extreme couponing, don’t you think?

But here’s the real problem with this: I’m a lawyer, and I’m good at working a system, and I don’t work anymore, which means I have time to do some extreme copay couponing. Imagine if I didn’t have time for this. Imagine if I didn’t have the skill to figure out how to work the system. Imagine if my doctor didn’t have a nice pharmacy guy to figure all this stuff out for me. Imagine if I didn’t have good insurance with a fairly reasonable catastrophic max. I might forgo lifesaving drugs, because of money. I might die even sooner, because of money. Let that sink in for a minute.

Our system of healthcare financing is a disaster. And what makes me crazy is that systems are set up by people. They aren’t inevitable–we, as a society, make choices about how to pay for health care. Other societies have made different choices, based on different values, with very different outcomes. We don’t have to live in a world where people die because they can’t afford health care. We have chosen this system, and we can unchoose it. Or, we can continue to force patients and doctors to make health care choices based on money instead of science, and I can keep doing my extreme couponing to get the care I need.

What’s it gonna do, give me cancer?

Since my diagnosis, I’ve had a lot of people ask me things like “Are you allowed to eat that?” and “are you allowed to drink alcohol?” I usually tell them that my oncologist told me, and I quote, “Under no circumstances should you give up chocolate or bacon” and that after one of my appointments, he said, again a quote, “You should go have a margarita now.” He’s probably embarrassed that I’m sharing this, because I doubt that’s the advice he gives most of his patients. But those of us with terminal diagnoses live in a different world than the rest of you.

Here’s the thing: a lot of what you read about cancer is information that comes from studying people with early stage cancer, not metastatic disease. It’s aimed at “curing” early stage disease, and preventing recurrence. When you already have metastatic disease, you have an incurable illness. The goal isn’t to prevent recurrence; new tumors are going to happen.

Let me say that again: for us metsters, new tumors are going to happen. The only people they don’t happen to are dead people. The only people who don’t die of their metastatic breast cancer are the ones who die of something else before the cancer gets around to killing them. As others have said, we metsters all die of or with our disease.

So, since the goal isn’t to cure us, and we know we’re going to die, what is the goal? It’s to let us have a good quality of life for as long as possible. If eating bacon and chocolate and drinking a margarita makes me happy, my oncologist sure as shit isn’t going to tell me to stop doing it, especially given the dearth of research supporting the idea that eating bacon and chocolate and having the occasional margarita is going to shorten the lifespan of metsters like me. While I’m alive, I want to live. I can abstain when I’m dead, which will be soon enough.

It’s the same with treatment decisions. Early stage disease comes with the traditional slash-and-burn treatments designed to kill every last stupid cancer cell, in hopes that your cancer will never return. Metastatic disease comes with an understanding that even if you cut out every tumor, more will eventually pop up. That’s how metastatic disease works–it spreads, that’s its MO. So, why put you through treatments that make you feel horrible, if they’re not going to cure you? That’s why you don’t get 6 weeks of radiation after your mastectomy; you get 3. In fact, you might not even get a mastectomy. You don’t get 6 rounds of chemo; you get 4. Because, again, the goal is to give you a good quality of life for as long as possible, not to cure your cancer. So, treatment for metsters is a balance, between doing things that will buy you time, and making sure that time isn’t filled with pain and puke and otherwise feeling like shit.

That’s why I’m so glib with people when they ask about whether I’m allowed to eat this or that. If cure was on the table, of course I’d be doing everything imaginable to get to cure. But cure is NOT on the table. I hate to keep harping on that, because I know it hurts the people I love when they have to face that, but it’s the truth. There is no cure for metastatic breast cancer. So, while I’m alive, I’m going to live. And that includes eating bacon and chocolate, and drinking a margarita once in a while.

As my college BFF’s mother-in-law, who died of metastatic breast cancer, used to say, “What’s it gonna do, give me cancer?”


I’m part of several mom groups, because finding support from other moms is seriously helpful. Not all mom groups are a good fit for everyone, but when you find one where the other women share your values, it’s pretty empowering.

I hadn’t talked about my cancer in one of those groups until recently. I find that when I disclose that I have cancer, and that it’s terminal, people react in predictable ways. There is a lot of “oh, I’m so sorry, how can I help, I wish I could hug you” kind of stuff, because most people are incredibly kind. Just, seriously, amazingly, beautifully kind. I suppose if I was in a group and they didn’t react that way, I’d know I was in the wrong group and I should run away from them.

After the initial outpouring of kindness, the secondary reaction is usually “You put my silly problems in perspective, I feel bad complaining about my challenges because they seem so minor in comparison.” And that’s when I wish I had kept on passing as a regular mom, one who doesn’t have a terminal illness. Because, I don’t want them to feel like they can’t talk about their struggles in front of me.

Folks who are different in a way that makes them “the other” often pass in our society, especially if their difference is one that will lead to oppression. It’s why gay folks sometimes live in the closet, and light skinned black folks sometimes hid their African ancestry in the era of slavery and Jim Crow. If lynching is something that could happen to a group you’re a member of, hiding that identity from the world makes a hell of a lot of sense. But there is danger in passing, too. If one is found out, the lynching can be even swifter.

Obviously being someone with cancer is nothing like that. Nobody lynches people for having cancer, or for pretending they don’t have it. Instead, my cancer merely makes people look at me differently than they did before they knew I had it. I feel like once they know, they don’t see me anymore; they just see the cancer. It’s written all over their faces. It’s incredibly isolating, actually, and sometimes I just don’t want to be “that mom,” the one the other moms pity, the one who makes their problems seem petty in comparison. I just want to be part of the gang.

I used to feel the same about The Boy’s prematurity. When people would ask me how old he was, and I knew the actual answer would mean I’d have to explain that he was born 3 months early, I’d sometimes just tell them his corrected age (that’s how old he’d be if he’d been born on his due date) instead of his actual age. Sometimes I wasn’t up for having that conversation, telling that story; it was just easier to pass as a regular mom, and hide my preemie mom identity. It was a relief when he was caught up developmentally and growth-wise with his actual age peers and the “how old is he” question didn’t lead to uncomfortable questions anymore.

I wish we lived in a world where being different wasn’t so isolating, where our differences didn’t separate us. I also wish I could win the lottery and buy a bungalow in French Polynesia, but I’m not gonna hold my breath that either will happen. So, I’ve learned that coming out as someone with a terminal illness, rather than passing as a regular mom, means that I need to know how to re-establish the sense of community that my difference can destroy.

I do that by reminding the other moms of what we have in common: a mutual hatred of doing the laundry; children whose tantrums make us want to pull our hair out; sleep deprivation. And I also specifically say, every time, that it’s OK for them to bitch about what’s bothering them. Parenting is fucking hard, for everyone, and everyone should have a space to complain about it when they’re struggling, a space where they can ask for support, even if others in the group are struggling in different ways than I am. If my illness helps them feel like their lives aren’t so hard, I mean, that’s fine too. But I sure as shit don’t want to add “I feel guilty for complaining” to their list of stressors, and I don’t want to feel like The Other.

I still pass as non-disabled sometimes–at the grocery store, at parties with people I don’t know that well, that sort of thing. But where I am part of a community, I try to be as open about who I am as possible, and encourage the rest of the community to do the same. Coming together to celebrate our sameness, in spite of our differences, makes us all stronger, and makes all our lives richer.

Grown-Up Movies for Kids: Yentl

A few weeks back, The Girl said the phrase “tomorrow night” just before bedtime, and because my brain is full of every song from every musical I’ve ever seen, I started singing “Tomorrow night, tomorrow night, under the canopy I’ll stand with her all dressed in white…” and The Girl said “No, don’t sing that.” So then I started singing “Papa Can You Hear Me.” Which was a horribly dumb idea, because then The Girl was like “Why is her dad in heaven, how did he die, did he get stepped on by a dinosaur, is my dad going to get stepped on by a dinosaur?!?!” So I assured her that no, he didn’t get stepped on by a dinosaur, he was just very old, and I promised to let her watch the movie so she could see there were no dinosaurs in it.

Now, plenty of haters gonna hate on Yentl because it’s cool to make fun of Barbra Streisand. I get it, she’s your mom’s favorite, because you’re Gen X or a millennial. But that woman can act, and sing, so stop being a pouty teenager and accept that Streisand is a star for reason. Besides, Yentl is a goddamn feminist icon. If you’re not inspired a woman who loves learning so much that she’s willing to deny her identity and give up the man she loves rather than give up her studies…well, I don’t know if we can be friends. There, I said it.

When we sat down to watch Yentl, The Girl was almost immediately transfixed. She asked lots of questions, like Yentl was sleeping in a forest, why Yentl had to pretend to be a boy, why Yentl got married, why Yentl didn’t want to go swimming, why she was getting married when she didn’t want to. Lots of questions, just like Yentl. She also loves the songs and now asks me to sing “A Piece of Sky” at bedtime.

The Boy, on the other hand, had a visceral reaction to this movie. He HATED it. I think the problem was that he knows that lying is wrong, and he was scared what would happen when Yentl got caught. He has that reaction to TV shows involving wrong-doing too, like, he’ll literally go hide behind a chair or leave the room entirely rather than watch someone doing something he knows they shouldn’t. It was really interesting to see how differently the kids reacted to this movie.

In terms of swears, violence, and nudity, there’s only the last one, and it’s pretty tasteful. You do get a clear view of Mandy Patinkin’s butt when he goes skinny dipping. My family sees each other’s naked butts on the regular (The Girl is practically a nudist) so they didn’t bat an eye at this, but of course your family may react differently.

What I really love about this film is how it supports my nerdiness. It can be really hard for a girl to feel like it’s OK to love books more than dresses, especially today. I also often feel like it’s not OK to ask all the questions running around in my head, especially as a woman–challenging authority is still problematic for women. Yentl gives me and The Girl an example of a person who said “Fuck that noise, Imma do me.” And frankly, The Girl can’t have too many of those examples in her world.

So, turn off that god-awful Sofia the First, and pop in Yentl. Your little girl may love it as much as mine does! Let me know what your kids thought of this film in the comments!

In Defense of Imperfect Feminists

Poor Patricia Arquette. I bet when she wrote her award speech for the Oscars, she had no idea that the feminist movement would turn on her the way it did. “How dare she insinuate that the LGBT community and communities of color have already achieved equality. Here comes a rich white woman telling us we’re not doing enough for her. I’m rolling my eyes.”

When I heard people say this shit, I got mad. Really mad. REALLY FUCKING PISSED OFF. I wanted to throw my TV across the room. Instead, here I am, writing a blog post about it.

Look, I get it. Arquette is a person speaking from a place of privilege. She’s wealthy and white and straight and non-disabled. And when someone with privlege stands up and says “Hey. I see an unfairness happening to women, and I want it changed” it’s easy for those without privilege to get mad and say “ORLY? Your life is all cushy and you’re demanding more? Why didn’t you use your power to speak for a group that has it worse off than you? You don’t get my pain and you are blinded by your privilege.”

Here’s the thing. Nobody is perfect. NOBODY. I have met plenty of feminists whose ideology is beyond reproach, but whose actions do the exact opposite of what feminism is supposed to be about. They are not part of the sisterhood because they shit on their sisters. They’re NOT perfect. They’re assholes and they are making it impossible for the movement to achieve its goals.

Goals. What are our goals, as feminists? Are they to convince everyone to see the world as we do? To understand the complex intersections of race, sexuality, and gender? If so, is rolling our eyes at people who aren’t there yet a good way to reach that goal? In fact, IS that really our goal? Or is it to improve the lives of women? Why did we want the right to vote? Why did we want equal access to higher education? Was it merely because we wanted an ideology of fairness, or was it bigger than that? 

When I look around, I see women struggling. I see women who can’t leave their abusive partners, because their employers pay them less money than their male peers for the same job. I see women who must work 2 jobs just to make ends meet, because they make less money than their male peers. And I don’t see a feminist movement that has accomplished pay equity for them, depsite decades of fighting for it.

Part of the problem, in my mind, is that we, as feminists, have spent too much time shitting on women who aren’t perfect feminists. We have alienated women who should be our allies. We have taken our eyes off the prize–equal pay, changes in the legal system to support survivors of domestic violence and sexual assault, paid maternity leave–and instead focused on defining the perfect feminist, the perfect feminism. And then when a woman like Arquette stands up and says “I want this thing for women” that feminists agree we need, we shit on her and we dismiss her, instead of saying “We want that too! Let’s do it together.”

As a feminist, I am opposed to anyone and anything that stops our movement from improving women’s lives. Including feminists who demand perfection instead of bringing allies into the movement. We have to stop demeaning women who want to help us, and come together to achieve our goals.

Children’s Television Survival Guide: Big Block Sing Song

You guys, I fucking hate most of the content on Disney Junior. They seem to have stopped carrying my favorite of their shows, Charlie and Lola, and we never seem to be watching when Handy Manny is on. That leaves us watching the incredibly annoying Jake and the Neverland Pirates, whining Sofia the First and her horrible brat of a stepsister, and Ella and her magic hat that bails her out of every situation she and her friends find themselves in. (No, Ella, everything you need is NOT between your ears, because without that hat, you’d be fucked.)

But one bright spot in the disaster that is Disney Junior is Big Block Sing Song, which is one of the in-between-show fillers. The first time I saw one, I thought it might be the guys from Flight of the Conchords singing, because it definitely has their flavor, but nope, it’s a couple of Canadian dudes. The songs are all 2 minutes long and each one has a different sound, but they all feature the same style of animation: basic boxy looking characters reminiscent of Yo Gabba Gabba.

One of the things I really like about Big Block Sing Song is the post-modern way it references other music. For example, one of my favorites of their songs is called Brave, and it’s clearly a Queen tribute. Colorful Day is a delightful tango. And Big Foot appears to me as a clear reference to Flight of the Conchord’s Hiphopapotamus vs. Rhymnocerous. But what really makes this series genius is the lyrics. Sad is a particularly awesome example. A unicorn burping up rainbows? Yes please!

I hope Disney Junior will turn Big Block Sing Song into a full series. It really deserves a whole half an hour, not just a couple minutes between shows.

How many women are living with mets today?

Today, the metastatic breast cancer community is lighting up social media with the hashtags #MetsMonday #BCKills and #dontignorestageiv because we want more funding to go to research that will save our lives. I encourage all of you to help us out by tweeting, particularly at the Cancer charities who are still spending too much on awareness and not enough on research, and by signing Ann Silberman’s petition asking Komen, the biggest breast cancer charity, to spend at least half its money on research.

How bad is the research situation? It’s pretty bad. 

Recently a heartbreaking article by Laurie Becklund, written as she literally lay dying from metastatic breast cancer, made the rounds on the internet. I think it’s fair to say that all of us with mets said “amen sister” when we read her words. I can imagine exactly the pain her family is feeling right now, and I wish I could hug them.

In her piece, Laurie wrote about how we don’t know how many women in America are living with metastatic breast cancer today. A lot of my friends were shocked to hear that. 

Let me explain what’s going on: the database that tracks everyone in America who has cancer is called the SEER database. For breast cancer, it tracks your stage at diagnosis, and it tracks when you die, but it doesn’t track when you progress from early stage to metastatic disease.

Someone like me who was mets from diagnosis is listed as stage 4 in the database, but most women who have metastatic disease weren’t mets from diagnosis. 

So, say, for example, you’re a 45 year old woman and you’re diagnosed with stage 1 breast cancer. You get a lumpectomy, you have some chemo, you have some radiation, and if your cancer is ER positive, you start on hormone therapy, like the Hormonal Sunset I’m on. And then 3 years later, you have a terrible headache that turns out to be a metastatic breast cancer tumor in your brain. Now you’re stage 4. But in the database, you’d still be listed as stage 1.

What this means is this: we literally don’t know how many women are living with metastatic breast cancer right now. We have an estimate based on how many women are mets from diagnosis and how many women die of their disease–the current estimate is about 150,000. The Metastatic Breast Cancer Alliance wrote about the problem in their big report that came out last October. 

Right now, the nice folks at the American Society of Clinical Oncology, or ASCO for short, are trying to rectify the problem. They want to create a database for all kinds of cancer, including breast cancer, that would include treatment information, disease progression–way more data than we’re collecting now. But that kind of database takes time and money to set up, so it’s still a few years away from being a reality. 

I feel like this is the poster child for what a craptacular job we’re doing working towards a cure. We know so little about metastatic disease–the mechanics of how metastasis happens, what cancer types are most likely to metastasize. And we literally do not even know how many people have metastatic breast cancer, let alone what treatments they’re getting and how effective they’ve been.

When women with metastatic breast cancer talk about the lack of research funding going to metastatic disease, this is one of things we’re talking about. And why it’s so incredibly frustrating to watch good money being thrown after bad ineffective awareness campaigns that are doing nothing to save our lives. 

We feel like we don’t count because we are not even being counted.