Month: February 2016

Casablanca

Posted on by Beth Caldwell

Casablanca is one of my all time favorite movies. I especially like the scene where Captain Renault has to shut down Rick’s Cafe because the Nazis tell him to, and when Rick asks him why, he says “I’m SHOCKED! SHOCKED! to find that gambling is going on in here!” And then Rick’s assistant comes out with Renault’s gambling winnings.

I thought of that scene with the recent spate of celebrity cancer deaths. So many people I know expressed shock about David Bowe and Alan Rickman dying of cancer–and I think it was partly that they kept their diagnoses a secret, but I also think there’s something else going on there. I think a lot of people have bought into an idea sold by virtually every cancer center and most cancer charities: unrealistic cancer hope. 

You’ve probably seen the ads from MD Anderson or American Cancer Society or whatever cancer treatment center is in your area. Do any of them say “We’ll do our best to treat you but cancer kills 500,000 Americans every year and you might die no matter what we do”? Of course not. I mean, who would choose a hospital that says that? Nobody, apparently. So instead, they suggest that they’ll cure you, that they’re fighters who are tougher than cancer, that if you choose them for treatment, they’ll save your life. And that’s bullshit. They’re going to do their best to save your life, but a lot of cancers are incurable. 

And it’s not just cancer centers and charities–it’s the press too. We see all these stories of hope, that show cancer warriors valiantly fighting their disease and being cured. Where are the stories of the reality of life with incurable cancers? The endless treatment, the knowledge that you will die of your disease? The watching those valiant cancer warriors have metastatic recurrences and die? These stories don’t sell papers, and so there are too few of them out there. People like a happy ending. People like fairy tales.

So, the general public–those not living with a terminal diagnosis and those who don’t love someone with a terminal diagnosis–are left with the impression that cancer is no big deal. You fight it bravely and you win. That’s the story they’ve been shown, over and over again. And when they’re faced with the reality of what cancer actually does, they’re SHOCKED! SHOCKED! to learn that cancer can and does kill people–even rich people, even famous people.

I hate to keep harping on this, but cancer is a shitshow. The treatments are still practically medieval–slash, burn, poison–and even if you take the most aggressive treatment possible, your cancer may never be cured, as mine will never be cured. This should not be shocking news given how many people die of cancer every year. That it DOES shock people is evidence that the dominant narrative is a lie.

We need to talk about race, y’all.

Posted on by Beth Caldwell

So, I’m a nerd–you guys probably understand that by now–and so I spent the flight to the cruise I took with The Hubs alternating between napping, reading The Emperor of All Maladies, and reading SEER data. SEER, for those non-nerds amongst you, is the big federal database that tells us about cancer statistics. It has a whole host of issues that make it a lot less useful than it could/should be, but one thing it tells us is how many people die of breast cancer. And it breaks that data down by race. And that data is HORRIFYING.

In 1975, the number of female deaths from breast cancer per 100,000 was about 31. (I’m really sorry, men. The SEER chart listed above just talks about women with breast cancer, once again selling short our male breast cancer friends.) In 2012 (the most recent data set we have) it was about 21. This is a good thing, and can largely be attributed, in my opinion, to HER2-targeted therapies like Herceptin. Nice work, researchers! You keep working on blockbuster drugs like that, mmmmkay? Seriously. We need you.

But here’s the problem. For white women, the rate went from 31.79 in 1975, down to 20.71 in 2012. But for black women, it went from 29.49 in 1975, to 29.43 in 2012. So, basically, if you’re a black woman in America, you’re just as likely to die of breast cancer today as you were in 1975.

WHAT IN THE ACTUAL FUCK.

What’s driving this? Is it tumor biology? Is it lack of medical care in poor black communities? Is it institutional racism that makes me, a white woman, more likely to get cutting edge care at a large cancer center? Is it that large cancer centers often don’t take insurance plans that are less expensive, and African-American women are more likely to be low-income and thus unable to afford the plans that large cancer centers accept? I don’t know, because I’m not a black woman–but what I do know is that this is not OK. I wrote about this in 2014 and I’m still upset about this today. My friends Adrienne and Reba and Toni, all black women with metastatic breast cancer, have lives just as valuable as mine. Their children love them just as much as mine love me. Their children NEED them just as much as mine need me. 

We need a national conversation about this. We need to be outraged that our African-American sisters are dying in much larger numbers than we are. And we need to ask the crucial question: how can we, as white women with breast cancer, help? 

Hanging on the side of a cliff

Posted on by Beth Caldwell

So, exciting news being NED, amiright? Exciting, but also terrifying. You see, everything in cancer land is ass backwards. For example, when your cancer gets worse, we call that “progression.” Progress would suggest improvement, right? Not with cancer. You’d also think that I’d breathe easier knowing the drug I’m on is working, right? Not so much. Let me use a metaphor to explain.

I’ve written in the past about how having metastatic breast cancer is like being shoved off a cliff. And I’ve also written about how hope is like a rope that kind people who just don’t get what metster life is is like will throw down to you and say “Here, climb this.” But the problem is, the higher you climb, the harder the fall. And you WILL fall. NED doesn’t mean cured. It means the cancer is too small to be seen on a scan. It’s still in there, trying to figure out how to overcome the drug I’m on and start growing again. 

So, basically what’s happened is, my oncologist gave me a rope, and I trust him more than I do the good hearted friends who say “be positive, have hope,” so I’ve climbed the rope. And now here I am hanging off the edge of the cliff on this rope, not fully at the top, but high enough that I can see the view from up here, and think “holy shit that’s a long way down.” 

At the top of the cliff are the researchers. And they say things like “be patient, help is coming.” But meanwhile I’m hanging here off this cliff, and frankly, my arms aren’t that strong. I don’t know how much longer I can wait. I hope those researchers realize I can’t just hang off the side of this cliff forever. Eventually I’ll fall. I don’t have 5 or 10 years to wait for a new treatment to be fully vetted. I need new things to be available when this rope snaps. Or better still, before it snaps.

So, I’m super happy I’m NED, but I’m also terrified. Because I know how slowly research is happening. It needs to move faster, not just for me, but for my friends whose ropes have already snapped.