Life at the Base of a Cliff

It must be metaphor month here at The Cult of Perfect Motherhood, because I’ve got another one for you.

Finding out my breast cancer was metastatic was like being shoved off a cliff. I landed at the bottom and just laid there for a while, because landing at the base of a cliff fucking hurts. After a while, I picked myself and looked around at my new surroundings, and thought, “I’m not saying I’d like to build a summer home here, but the trees are actually quite lovely.” I’ve made some new friends down here, and although I wish I hadn’t been shoved off the cliff, I’m living a decent life in this place.

Once in a while, someone will come look down at me from the top of the cliff and say “Hey! I’m throwing you a rope, climb back up!” That rope is made of their hope. It’s a hope rope. (Isn’t that cute? I should market Hope Ropes. Patent pending.) They’re obviously well-meaning people who miss having me living up at the top of the cliff with them and are just trying to help. The problem is, they’re not actually helping.

Here’s the thing. Metastatic breast cancer is a terminal illness. I know I’ve said this before. A lot of times. But it doesn’t seem to sink in with most people, so let’s talk about the data. Average time from diagnosis with metastatic breast cancer to death is about 2-3 years. ¾ of us won’t be alive 5 years after diagnosis. The people handful of people who don’t die of their metastatic breast cancer? They die of getting hit by a bus or something else sudden and catastrophic. Which, frankly, isn’t exactly a “win,” is it? Metastatic breast cancer is incurable.

This is the reality. This is life at the base of the cliff.

So, when someone throws me a rope, what they’re asking me to do is really stupid, because it’s really dangerous. It’d be so easy for that rope to snap before I get to the top, and even if I did somehow make it up there and had “no evidence of disease,” eventually metastatic cancer always comes back. Always.

I don’t know how many more times I’ll be able to fall off a cliff before I can’t pick myself up anymore. And I know there are more cliffs down here—the lung mets cliff, the brain mets cliff, the liver mets cliff, the “there are no treatments left for us to try” cliff. I need to conserve my strength for when cancer shoves me off one of those cliffs. When, not if.

That’s what I meant when I said living with other people’s hope is hard. It’s hard because I have to tell them no when they throw me the rope, and that often hurts them, and I don’t want to hurt them, but I have to say no. Sometimes they try to argue with me about how they won’t let me fall, or say I’ve given up by living down here at the base of the cliff. I haven’t. I want to live for as long as I can, and for as well as I can. It’s just that I know that I’m going to live better if I’m realistic about what my life is now than if I keep wasting my strength trying to climb back up the cliff. So, I wish they’d stop throwing me ropes, and just let me enjoy the lovely trees. Because the base of the next cliff may not be as nice.

Worst Wife Ever Moment: Shitfaced Macaques

One evening last week, I read something about a research study done on rhesus macaques. The gist of the study was this: they put a bunch of macaques in a couple of cages, and let the macaques in one cage drink as much booze as they wanted, and in the other cage, the macaques just got sugar water. Then the researches gave the macaques a vaccine and measured how well their bodies responded to the vaccine. Turns out the moderate drinking monkeys had the best immune system response, followed by the non drinkers, with the very drunk macaques having the worst response.

Right after I read about the study, I went to bed, where The Hubs was already settled for the night. He was just about to drift off to sleep when I said to him, “I just read about the most amazing research study involving booze and monkeys.”

Now, for those of you who don’t know, The Hubs has a thing about monkeys. Like, he convinced The Boy that there is a monkey living up his nose. He once told my nephew to tell my sister that he wanted monkey brains for dinner. (She was making mac and cheese. Which kind of looks like chopped up monkey brains. Which freaked out my nephew, who was like 4 at the time. It wasn’t pretty.) So, I should have realized that when I said “booze” and “monkey” in the same sentence, that The Hubs would not be getting any sleep that night.

The conversation went something like this:

“Did you say booze and monkeys?”

“Yeah, they locked some rhesus macaques in a cage and let them drink as much as they wanted. Some of them were moderate drinkers and others were just drunk for like the whole time they were in the cage. They had a control cage too, where they just got sugar water. Turns out the moderate drinking macaques had the best immune system response to the vaccine they gave them.”

“Oh my god, that is the most awesome thing I’ve ever heard of. Except for the poor sober macaques. How drunk are we talking?”

“I don’t know, pretty drunk, I guess.”

“Dude, I have to know more about this. Imagine writing the grant proposal: ‘I’m gonna get some monkeys, and lock them in a cage with some booze, and just let them get shitfaced.'”

“I feel like Shitfaced Macaques would be a great name for a band.”

“What kind of band?”

“Well, there were 6 monkeys in the booze cage, so I’m gonna go with 6 band members. It sounds like a blue grass band to me, don’t you think?”

“So guitar, base, drums, what else?”

“Jug, Autoharp, and singer.”

“How long were they in the cage?”

“Several months, let me look up the article…ah yes, 14 months.”

“SHUT UP. They were just drunk in a cage for 14 months?!?!”

“Yep, the moderate drinkers had a blood alcohol level of .02 on average, and the drunk monkeys averaged above a .08.”

“AVERAGED ABOVE A .08?!?! For 14 whole months?!?! How much above?!?!”

“It doesn’t say.”

“What kind of booze?”

“Ethanol. Blech. That makes me sad. It should have been rum at least. Although, I guess ethanol ”

“Who paid for this study?”

“I would have guessed some sort of booze industry association, but it says here it was funded with an NIH grant. Wait, 2 NIH grants.”

“That is the best use of my tax dollars I’ve ever heard of.”

The conversation went on like that for like an hour, much of which The Hubs was laughing so hard he was crying. And then he said, “How will I ever get to sleep now? I can’t stop thinking about those poor sober monkeys in the booze-free cage.”

The next morning, The Hubs looked at me with his exhausted bleary eyes, and said, “Shitfaced macaques.”

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.

A Sense of Purpose

I don’t know if you guys heard, I mean, I only tweeted about it and shared it on Facebook like ten thousand times with all caps freak-outs, but I was on Huffington Post for the first time last week. Am I bragging? Fuck yeah! It’s made me reflect a bit on this whole blogging thing, as has the whole rock-smoothing I’ve been doing. Pardon me while I navel-gaze even more than usual.

One of the biggest things that is now covered in lava and can’t be restored is my legal career. It’s pretty hard to hold down a job when you’re in treatment, and honestly, the stress of finding a work-life balance is more than my stress box can hold now that it’s got two big ass trauma rocks in it. I’m mourning that loss, in ways I didn’t realize I would when I decided to take a disability retirement. It was a part of my identity more than I realized. It feels really raw and for a while I felt kind of lost and alone about it.

Then I pulled my head out of my ass and realized two things. First off, shitloads of moms have to go through that loss of their career all the damn time in this country, because of the shitty way we treat parents in the workplace. I know other lawyers who left their careers to be parents. Daycare is fucking expensive, and even more so if you work in a job that requires long hours and doesn’t respect that the child care center closes at 6PM and charges $5 for every minute you’re late. The forced-from-your-career thing doesn’t just happen to lawyers either, it happens especially to low-wage workers for whom daycare literally costs more than they make. That makes me feel mad about losing my career instead of sad and alone, which is somehow easier.

Secondly, one of the things I got from being a lawyer was a sense of purpose. My work made me feel useful. There were many, many days when I just felt like a bureaucrat, but there were also days when I’d talk to a parent whose kid was struggling and they’d cry on the phone and tell me thank you for being the first person who listened and tried to help. Those days were fucking amazing, and I was missing them a lot. And then BAM! Huffington Post, y’all, and I had other bloggers sharing my words on their blogs and on Twitter. MY WORDS. And saying how my words made them feel less alone, or how they were going to approach their friend with cancer differently, or how moved they were.

Oh hello sense of purpose, it’s nice to see you again! Turns out you weren’t destroyed by the lava, you just floated downstream in it and landed someplace new. Damn, sense of purpose, you’re STRONG.

I don’t have a ton of readers here. The Hubs keeps joking about how his wife is “famous on the internet.” In fact, the other day he said, “Not only do I know someone who’s famous on the internet, I’ve SLEPT with someone who’s famous on the internet.” Famous isn’t really what this whole thing is about, though, I mean, I’m not monetizing this blog and casting a wide net isn’t my goal here. It’s about me sharing my thoughts, and hoping they mean something to someone else someday. That the someday turned out to be last week? Yeah, that felt fucking AMAZING.

Which is why I want to say thank you, to all of you who read this blog, and to all of you who’ve said such nice things about my writing. It means so much to me, and to my sense of self-worth, that what I have to say means something to you.

Smoothing the Rock

You guys, I love a good metaphor. They really help me understand things that might be otherwise totally beyond comprehension for me. When I first started this blog, I wrote a post about trauma and PTSD and the NICU, and the metaphor my therapist gave us for understanding how we process trauma and move forward. She talked about how trauma is like a rock, and you’re stuck with it, like, it’s superglued to your soul and you can’t get rid of it–its weight will be with you forever. But over time, you can smooth down its rough edges, so it doesn’t cut you up all the time anymore.

Well, I’ve been doing a lot of smoothing of my cancer rock lately. I hadn’t done much to try to sand it down until recently, because, frankly, my rock was still growing as I went through treatment. It was still a hot river of lava, oozing out from the volcano that is Mt. Cancer, still growing larger. But treatment is over, and Pele is quiet again, quiet enough for me to be able survey the new landscape and start the work of taking that rough, scratchy volcanic rock and polishing it down.

A big part of that for me is figuring out what damage the volcano has done, and what remains. There are little islands of my psyche that I keep finding that the lava didn’t destroy–my dark, inappropriate sense of humor; my begrudging respect for Ernest Hemingway; my love of all things Wes Anderson. A deep and abiding love for my husband. A hatred of injustice. My right breast. Those are the victories, the neighborhoods spared as the lava flowed down a ravine instead of into a cul de sac of homes.

But the many pieces of me that the lava destroyed must also be acknowledged, and then mourned, in order to allow me to rebuild. I can’t just live in those tiny islands that remain, as beautiful as they are. Smoothing down the scratchy volcanic rock is hard work, exhausting work, but necessary work.

How do I do it? Well, there’s a lot of allowing myself to feel again, which means a lot of tears. Water can cut through rock over time, and break it down into soil where new seeds can grow. I write about it, and I talk to friends, some who understand too well, and some I hope will never have to understand. Their listening, and yours, helps tremendously. And when I don’t have the energy to work on the rocks anymore, I retreat to one of my islands. I hug my kids. I re-read an old favorite book. I binge watch a TV show. I bake too many muffins and give them to the oncology nurses.

My hands are pretty torn up from all the rock-smoothing I’m doing right now. But in the end, I know it’ll be worth it. The new me that I will build from the islands that remain of the old me, and on the new landscape that has formed, will be different than the old me, but she’ll be just as lovely. And just as good at metaphors.

Cocktails with the Cult: Midnight Moon Apple Pie

No, this isn’t a sponsored post. You may have noticed by now that I don’t do sponsored posts. I just talk about the products I enjoy, because I’m a nice person.

A few months back, one of our neighbors brought us over a basket of awesome treats, including some amazing dulce de leche candies for the kids, and a jar of Apple Pie flavor Midnight Moon. Midnight Moon is a small batch distiller that makes moonshine. They make it from corn, and you can get it in just the plain old moonshine flavor, or you can get it like my jar of Apple Pie flavored moonshine, with juice (there’s several flavors, including blackberry, which I can’t wait to try) and spices. When I got the jar of Midnight Moon, I wasn’t at a place in treatment where I could drink alcohol, so I stuck the jar on our liquor shelf in our pantry and promptly forgot about it.

Fast forward to now. I’m cleaning out my pantry because there’s shit in there that expired in 2010 (oh hello old bag of pistachios that The Hubs bought and never ate because I stupidly put them in the back of the pantry where he’d never find them) and I come across the jar of Midnight Moon. And I thought, “MOONSHINE!” Because I’ve just finished binge-watching all of Boardwalk Empire (shit, you guys, that was a long series–it gets a little Scorcese for my taste the last couple episodes, but otherwise it’s good) and of course moonshine would go fantastic with Emily’s latest album, especially Big Butter and Egg Man.

Drinking straight moonshine sounded like it would be a bit much for me (I talk a big game, but seriously, I’m a lightweight) so I just started with a tiny sip to see what it tastes like. HOLY SHIT YOU GUYS, it’s like drinking apple pie! Loads of cinnamon and apple flavor, really delicious. On the other hand, that tiny sip plus the alcohol fumes coming off my glass was enough to make me buzzed. So then I then I thought, “Dude, I wonder what kind of delicious cocktail you could make with this?” Turns out, their website has recipes, so I don’t even need to make one up for you guys. Which is good, because I’m lazy. Thus, I give you a link to their recipes that you can make with their Apple Pie flavor. I’m partial to the Ginger Johnson, but let me know which one you like best in the comments. Cheers!

“Your hair looks great!”

When I was a senior in college, I went home for winter break and decided I wanted to cut off my long hair. It had been long for a few years, and I just wanted to do something different with it. So, I went to my mom’s salon and told the woman I wanted it cut short. The conversation went something like this:

 Me: I want to have it shorter.

Her: Super! You’d look great with a shoulder length style.

Me: No, I mean short.

Her: Like a chin length bob?

Me: No, short. Like, above my ears. You know, short.

Her: Did your boyfriend just dump you?

Me: …uh, no, I’ve been single for a while now.

Her: Are you flunking out of college?

Me: What?!?! No!

Her: Are you coming out or something?

Me: No, I’m straight, why do you keep asking me these questions?

Her: Because usually when people want to go from long to super short, it’s because they had something bad happen or they’re trying to make a big change in their lives.

Me: Wow. No, the only change I want to make is to the actual hair.

Her: Are you sure? Because, if I cut it that short, I mean, it’ll take a long time to grow back out.

Me: Yeah, I’m sure. Seriously, can I just have it cut now?

Honestly, I got asked less questions by the minister when I was getting married than when I got that haircut. People take their hair super seriously. There’s a lot of our identity tied up in it. Which is why it seems to be the thing that people focus on when cancer happens. I never really thought about it that much until my hair fell out during chemo last spring and suddenly my hair, or lack thereof, was a subject of conversation all the time.

I fucking hate my hair now. Because, it wasn’t my choice. I didn’t get asked 10,000 questions by my oncologist about whether I was sure I wanted to go bald. Instead, he just told me the cisplatin and etoposide would make it fall out. Cancer does that to you. A lot of the choices you used to get to make, you don’t anymore. Hair is just the most visible one of them.

I get zillions of compliments on my new do. Even when people know I hate it, and even when they know I don’t feel better when they talk about my hair, they seem to be unable to stop themselves from saying how awesome my hair looks. I get told I look great by practically everyone I know. I have been trying to understand why people seem to have such a need to comment on my appearance. Why do we tell the cancer patient “you look great”? Why do we celebrate when a cancer patient doesn’t look like Skellator?

I think it’s this: when you have cancer, or any other life-threatening or terminal illness, people want you to be well. They love you, and they don’t want you to die. So, they cling to every scrap of hope that you are going to beat your disease, and looking like you’re not dying gives them that hope.

But the truth is, you can’t tell that someone is going to be cured just by looking at them. Lots of us folks with metastatic cancer are living with our disease for now, and we look and feel OK for now, but the truth is that we’re going to die of this unless there is a miracle breakthrough in our now-shortened lifetimes. That our hair is growing back isn’t necessarily the sign of wellness people assume it is.

And for me, living with everyone else’s hope is hard. I’m living with my doctor’s hope that science will find a cure in time for me, when we don’t seem to be putting enough resources into research. I’m living with my husband’s hope that we’ll die together in a nursing home in our 90’s, when even the most optimistic estimates of my life span rule that out. I’m living with my former coworkers’ hope that I’ll get well and come back to work with them, when I am probably going to be too busy with doctor appointments the rest of my life to ever hold down a job. I’m watching everyone around me needing to hope I will be well and somehow beat this thing, but knowing I will let them down someday.

And so they say how great I look right now, and how cute my hair is, because they have hope. And inside I want to scream. I want to say, “Wake up! This is going to kill me. There is no silver lining to this. It’s not cute. Every bit of this is ugly. EVERY BIT OF THIS IS UGLY.” But I don’t say it, and instead, I make small talk about how lucky I am to have a nicely shaped head. And I hope it won’t be too hard for them when it turns out that looking good can’t cure your cancer.

Beth’s Classic Film Club: The Best Years of Our Lives

It’s coming up on Pearl Harbor Day again, and I’ve been thinking lately about our World War II veterans, who are getting pretty old nowadays. And so, this week seems like a good time to watch a movie that explores the lives of those veterans, and I can’t think of a better film on this subject than The Best Years of Our Lives.

This film was made in 1946, just one year after the war ended, and because of that, it’s able to express the reality of veterans coming home from the war. The plot centers around three men–an older sergeant with two mostly grown kids and a cushy job at a bank to return to; an officer who flew in B-17s as a bombardier, from a poor family who married in haste before he went off to war; and a sailor who lost both his hands on a ship in the Pacific and has come home to his family and a long-time girlfriend.

Fredric March won an Oscar for his potrayal of the sergeant, who is coping with his reentry into civilian life by drinking. A lot. Like, a LOT. It’s reminsicent of his performance in A Star Is Born (the original, not the Judy Garland version). His anger at the people who stayed behind, and their lack of compassion for those who fought, is very moving. Luckily he’s got Myrna Loy as a wife, because she is very sympathetic about why he’s drinking so much. The strength of their relationship is incredible, and the scene where he comes home to her makes me cry every time I see it.

Dana Andrews plays the bombardier, and I’ve always been fascinated by his character because his story is a lot like my grandfather’s. He was a bombardier too, and an officer, and from a non-wealthy family, and when he came home, he had trouble finding meaningful work, just like Andrews’ character. (Luckily my grandmother wasn’t at all like Andrews’ wife.) The shift from respected officer to soda jerk is not an easy one for Andrews, and on top of that, there’s the PTSD, which is explored in more detail than one would expect in a film made in the 1940’s.

Lately, though, I’m feeling a sort of kinship with the sailor, played by Harold Russell, who won two Oscars for this role. Russell actually did lose his hands during the war, in a training accident, and used the hooks you see in the film in real life. That he was not an actor before his accident is astounding to me, because he’s outstanding in this film. What gets me about his character is how frustrated he is about his loved ones not acting the way he wishes they’d act. Not that he seems to know how he’d like them to act–he just knows the way they’re acting makes him feel angry and isolated. Everything everyone says is wrong, and he doesn’t know what to say to them either. So he retreats from everyone, even though they want the best for him. It’s really easy to do that when you’re damaged, and as we see in the film, love and acceptance can help you overcome that urge and find a way to build your relationships back up again. In fact, that’s what all three characters show us–that love helps heal the wounds left by trauma. It’s a beautiful sentiment expressed in a movie filled with a huge amount raw emotion.

I’m also surprised every time I see this film at how timely it is. People who come home from war face the same struggles today that they did in 1946, and it’s important for those of us who stayed behind to understand those struggles, so we’re better able to help.

So, get some kleenex and check out The Best Years of Our Lives, and let me know what you think in the comments!

Explaining privilege to my white son

Here is the blog post where you decide I’m too political for you to follow me anymore. Before you go, I just wanted to say, it’s been real, y’all.

Oh wait, you’re still here? Then read on, brave souls, about how a white civil rights lawyer explains about privilege to her white son.

On the second night of the Ferguson protests, I sat down to watch the news with The Boy. Before I turned the TV on, I said to him, “Remember how we talked about how there was a young man killed by a police officer last summer? And people were really upset about it, because the young man didn’t have a gun or anything, but the policeman shot him anyway?” And he said, “Yeah, the kid wearing the hoodie?” And I said, “No, that was a different kid, and the man who shot him wasn’t a policeman. This one was a little older than the other kid.” And he said, “Oh,” in a sad voice.

Which is basically how I felt saying that sentence to him. Very, very sad that this keeps happening so much that my 7 year old is aware of multiple cases of unarmed black men being shot and killed.

And then I said, “Well, there was a jury that decided today that the police officer who shot this young man didn’t do anything wrong, so he isn’t going to have to go to court or anything. Or jail.” And The Boy got mad. He said, “That’s not right! That makes me so mad! That jury is stupid!” (Stupid is a pretty strong word for a 7 year old.)

Which is basically how I felt upon hearing the verdict too. Pretty mad, although, less surprised than The Boy. I’ve seen a lot of racist shit while practicing civil rights law, so it takes a lot to shock me now. But the absence of shock doesn’t mean the absence of anger. Injustice still makes me see red. Just like the people in Ferguson.

Then we talked about the community’s response to the verdict. I explained that there were a lot of people who thought it was unfair and stupid, and that many of those people had gone out to protest the verdict by walking in the streets, carrying signs, and using their voices. I also told him that there were some people, not most people, but a few, who were doing violent things because they were so mad, like burning cars or smashing windows.

The Boy said, “That’s stupid too. Smashing stuff doesn’t make things better.” I told him that’s right, it sure doesn’t.

At that moment, Michael Brown’s mom came on the TV, and I said, “That’s the young man’s mom.” And The Boy looked at her anguished face, and said, “If my sister died, I’d be really sad.” And I said, “Of course–families are sad when someone dies, because we love each other.”

Then I said this to him: “What makes me most upset about this is that I think this young man died because a lot of white people are scared of black people. And so they act out of fear, and think that black people are dangerous, even though they’re not. Even policemen get scared sometimes. It makes me sad that that mom had to lose her son, and other moms have to be scared for their sons, because they’re black. It’s not fair that I don’t have to worry about you, but they have to worry about their sons.”

And The Boy said, “Because I’m white.”

And I said, “Yep, because we’re white.”

And he said, “Yeah, it’s not right. I don’t like that feeling.”

And I said, “Me neither.”

That night before bed, The Boy asked me to tell him a story. I often tell him a story about when I was a kid and went on a vacation, or a story about my grandparents, or about the time he pooped on our cat. But it seemed wrong that night to be talking about our own stories, and so I told him about Harriet Tubman instead. After I finished, he asked me to tell the one about the woman on the bus, but I told him it was bedtime and we’d have to talk about Rosa Parks tomorrow.

I feel like this: the best way I can fight for a world where black mothers don’t have to live in fear for their sons, where they can feel as secure as I do when I send my son out in the world, is for me to make sure my white son understands what he has, and what others don’t have. I have to teach him not just that Michael Brown’s family is just like ours, but how unfair it is that a family that is just like ours can’t have the same peace of mind that we do. That it’s wrong for things to be this way, and we need to be that family’s ally in making change happen.

You may think this is too heavy of a topic for a 7 year old to understand. I disagree. I think it’s so fucking obvious, even a 7 year old can get it, if only we’d try to teach them.