At Least

It took me getting cancer to realize that America’s pastime isn’t baseball. It’s attempting to find silver linings no matter how dark the clouds are.

I can’t tell you how many people have tried to make…me? themselves? both? feel better about this whole cancer nonsense by pointing out things that aren’t horrible. They said “At least you have a nicely shaped head” when I went bald. Or “At least you have a good disability pension.” Or “At least you got to meet some new friends because of cancer.”

I did it too, to be honest. Until one day, when I was done with denial, I thought, “You know what? This situation sucks, why am I looking for the bright side in this as if that’s going to make it not suck? My nicely shaped head doesn’t change the fact that I have a terminal illness.”

Since then, “At least” has become my least favorite phrase. And it seems like Americans in particular use it ALL. THE. TIME. As in “At least more people weren’t killed in that 100 car pileup” or “At least 9/11 really brought Americans together in a spirit of community.”

Are you fucking kidding me? No. Just no.

Sometimes it worries me that we, as a culture, don’t seem to know what to do when people are struggling except to try to distract them from the thing that’s wrong. We tell people who experience racism that at least they aren’t living in the era of slavery. We tell people who are grieving the loss of a loved one in war that at least they died serving their country. We tell people who lost their job that at least they still have their health. It’s like we’re saying that if there’s anything in your life that isn’t shitty, that’s supposed to make it OK that something really bad happened.

I mean, look, I don’t think we should all just sit around moping and giving up all hope whenever something bad happens, and ignoring everything good that happens. But pretending like a shitty situation isn’t so bad because not every inch of it isn’t completely covered in manure? That’s dumb. And really dismissive to the person living with the poop.

Instead, how about we acknowledge that something is wrong and ask “How can I help?” How can I help the family of the police officer who was murdered? How can I help the person who is homeless? Why not take our American optimism and ingenuity and face the problem head-on and come up with solutions?

It seems like an umbrella is a lot more useful to someone caught in the rain than just pointing out that there’s a rainbow.

Birthday Parties and Feminism

When you think of the last kid’s birthday party you went to, who do you give credit to for it being a well-put-together or not-so-well-put-together party? A dad, or a mom? Be honest. Unless we’re talking about a gay couple or a single dad, you’re probably thinking a mom was responsible for the adorable gift bags and the too-cute-by-half perfectly frosted cake, right? Not the dad, the mom.

In my household, The Hubs and I plan the parties together. But I’m the one who obsesses over details of things like how the cupcakes are arranged and what the decorations look like. Because I know I’ll be the one judged by them.

I don’t find my joy in stuff like that. When I was younger, I did. I liked entertaining and trying to make the perfect Martha Stewart turkey for Thanksgiving and whatever, but now I just find it tedious. I don’t enjoy trying to impress people people anymore. But I often feel the pressure to do it, and kid birthdays are when I usually succumb to that pressure. Last year, I didn’t, though. Cancer was a simple excuse to escape from the goodie bags filled with junk no one wants, and the carefully planned activities, but the truth is, I didn’t do it because I didn’t want to do it anymore.

I don’t say all this because I think it’s wrong to throw cool parties for your kids. Some women I know really enjoy that stuff, and I think that’s awesome. What’s not awesome, though, is the pressure to do it if it’s not where you find your joy. And the pressure to throw a Pinterest-worthy party when you don’t like that stuff is a peculiarly mom thing. Most dads don’t seem to have this problem, and I think it’s because party-throwing is still perceived as a mom task. Dads do home improvement projects; moms throw parties.

Here’s the thing: anytime there is a task like that–like installing a shelf or cupcake decorating–and you hate doing it but you feel like you have to because of your gender, that’s a problem. That’s a big red flag. And when stuff like this comes up, you should ask yourself some questions. Like, am I doing this because it’s actually necessary or it’s important to me, or am I doing it because I worry other people will judge me? And, is this something that a parent of another gender would feel judged for? If not, then why am I doing it?

There is enough stress in parenthood without feeling trapped into doing stuff simply because it’s expected of your gender. If you love it, do it. If you don’t, and it’s not really necessary, then fuck it. And if anyone actually does judge you for it, fuck them. As The a Girl likes to say when someone upsets her, “You’re not invited to my birthday party!”

Cocktails with the Cult: The Godmother

Continuing on with my “in college” theme as my arrival in DC rapidly approaches (I’ll be departing for NYC as you read this!): in college, for a time, I acquired the nickname The Godmother, because my grandfather was Italian and he worked in Reno as a casino doctor in the 1950’s and I always wondered if he was, well, you know. He’s since passed away at the ripe old age of 93.

One time when I was in law school, he pulled me aside and said, “How’s law school going?” in that very Marlon Brando as Godfather voice he had, and I said, “Good, Grandpa.” And he said, “Anybody giving you any trouble?” And I said, “No, Grandpa, everything’s fine” and he said, “Well, we’ll be keeping an eye on you.” And I thought “WE?!?!?! WHO THE FUCK IS WE?!?!?!” Luckily I didn’t get an offer I couldn’t refuse when I graduated, although there are times when someone pisses me off and I think “I wish Grandpa was still alive, because I bet he’d know a guy.”

But enough about my sociopathic tendencies. Did you know there’s a drink called The Godmother? And it’s got vodka in it? And that it’s only two ingredients, so it’s easy to make? Clearly this drink has my name all over it.

Here’s what you do: mix equal parts vodka and amaretto. Pour over a glass filled with ice and stir. Bam, done.

I’ve always liked amaretto, ever since my college BFF introduced me to it (her favorite drink in college was an amaretto sour), but I never thought to mix it with my favorite liquor, vodka! So tasty. Cheers!

Fatigue

I need to bitch about a symptom. I don’t do that very often. I try to stay pretty sunny, because honestly, I don’t have a ton of symptoms, and I don’t like complaining. But I’m frustrated and I need to get this out.

Since The Cancer, I get really tired sometimes. On Friday, I had lots of energy, so I tackled folding the 34 loads of laundry that had piled up on top of my dryer, and I swept and mopped. The next day, I was spent. SPENT. I managed an outing with the family to a children’s museum, where I sat on a bench for as much of our time there as I could, and then I came home and just laid in bed the rest of the day.

Fatigue. I didn’t really understand what that word meant, until The Cancer. Oh sure, I got Mom-tired, I mean, it’s exhausting being a mom. EXHAUSTING. But it’s not like this. This is a whole other thing.

The Hubs has been worried that it’s caused by anemia or a low thyroid or something, but reading about what it’s like having mets, it seems to just be part of the game now. I’m still really terrible at pacing myself with this new level of energy I have, and I get fooled by good days where I feel good, and I overdo it. I leave for the east coast in a few days, and I’m worried I won’t be able to get out and have a good time as much as I’ll want to, because I get so damn tired.

What’s really upsetting about it is that it’s yet another way The Cancer is forcing me to change. Add a normal energy level to the list of things the lava has covered up. Add being able to spend a day on the go to the list of things The Cancer has taken away from me. And it’s only beginning. If I think I’m tired now, wait until the next round of chemo. Wait until lung mets happens.

I’d like to say thank you to everyone who’s been understanding about me being so damn tired all the time, and not been mad when I had to cancel plans. I know it’s frustrating for you but it’s even more so for me.

Cocktails with the Cult: Alexander

When I was in college at The George Washington University, we had a center playing for my school’s basketball team named Alexander Koul. He was enormous and Russian, and folks called him Sasha, because Russians do that. I’ve been thinking about Alexander lately because I’m headed back east next week and I’m going to be spending some time with old college friends and watching a game on TV (both our men’s and women’s teams are out of town that week–I planned badly) and I’m sure we’ll be talking about our college days.

So, I was trying to figure out what my next Cocktail with the Cult would be, and I’m really into old-timey cocktails because I wish I was a hipster. So I was looking at the list of classic cocktails on the website of the International Bartenders Association, and lo and behold, the first one on the list is a cocktail called the Alexander. And I thought, “Brandy Alexander, blech” but it turns out, the plain old Alexander is not made with brandy, it’s made with cognac. Which I happen to have in my liquor cabinet because I use it to bake these muffins. Which would be DELICIOUS with this drink.

Thus, I bring you, the Alexander.

1 part cognac
1 part creme de cacao
1 part creme

Shake over ice, strain into a glass.

Holy moly, that’s strong. But also so tasty–definitely a good sipping beverage with those muffins, or really with any dessert. Cheers!

Living in the center of the circle

There’s a thing I read on the LA Times website that I’ve shared a zillion times, because it’s such good advice. SUCH good advice. In most situations. But I’m starting to feel like it isn’t such good advice in mine.

Go read it now. No, seriously, we need a common frame of reference to make the rest of this discussion make sense. Are you back? Good.

Here’s the thing about the circles. In the short term, they make absolute sense. The person in the center of the circle is the one having the crisis, and thus the one who needs the most support and has the least ability to take care of everyone else around them. The people in the next ring need the next most support, and thus are next least able to take care of everyone around them. Comfort in, dump out. It’s a great way to help a friend get through a crisis.

That said, I feel like this model isn’t sustainable in the long term. Eventually, the person in the center starts to feel isolated, a delicate flower that everyone tiptoes around and hides their feelings from because they’re trying not to be a burden. Which means, the person in the center doesn’t get to have full and meaningful relationships with the people around her. And frankly, I don’t want to live like that for the rest of my life.

I mean, I can’t prop everyone up. I just can’t. I don’t have it in me. But at the same time, when everyone is putting on their brave face and not telling me that they feel sad or angry or whatever it is they feel? Yeah, that doesn’t fool me. It just makes me feel pitied and less-than and so very, very alone, rather than supported and loved–which I know is everyone’s goal, because my friends and family are wonderful big-hearted people.

Let me put it another way: it’s hard for me to talk about how I feel to people who don’t ever talk to me about how THEY feel. If you’re bottling, I’m bottling. We’re not having a relationship–we’re both wearing masks.

What’s the answer, then, for those of us who have to live in the center of the circle for the rest of our lives? The fuck if I know. I’m starting to think that all I can do is kvetch about how people are making me feel shitty by trying not to make me feel shitty.

Or maybe it’s this: maybe it’s about remembering when the immediate crisis of treatments and feeling ill are over that the person with the cancer in the center of the circle is still a person, not an object of pity, not a delicate flower that can’t be exposed to anything negative. We’re people, and we want to have real, honest relationships with other people.

The Wo-Man Cold

When The Hubs gets a cold, he magically transforms from a supportive, independent, rock-star husband into a sad, pathetic, needy little boy. He drinks tons of tea and he needs hugs and he sleeps all day. He gets the ultimate Man Cold every time he gets a cold.

I know I’m not the only one whose husband gets a Man Cold. Because I have talked to dozens of straight married women whose husbands do the same thing. Not all of them, of course–some do like I tend to do and power through it, all the while bitching about it how shitty we feel. But enough that I feel justified in using the phrase Man Cold.

Gay men: do your husbands/partners get Man Colds? What happens if you both get a Man Cold at the same time? Do the children just go feral and forage for food wherever they can find it? I’m asking because I’m about to do the most feminist thing I can I think of: I’m going to do some gender-bending and start getting Man Colds myself.

Here’s the thing: when people of either gender get sick, they feel like ass. A fever makes you feel like ass. A nose rubbed raw from wiping it 10,000 times feels like ass. Post nasal drip draining into your stomach and giving you the poops feels like ass. It is perfectly reasonable that The Hubs would take a break and get some rest when he feels like ass. He is not in the wrong here.

So why, when I have a cold, do I play the goddamn martyr and act like I’m a better person because I kept up my usual routine when I was sick? Why don’t I feel like it’s OK to let the house get messy and let The Kids entertain themselves with extra screen time for a couple days? I’ll tell you why: because of the goddamn Cult of Perfect Motherhood trying to tell me that I must be completely selfless at all times and that if my house isn’t perfect and I’m not giving 150% every minute, I am a bad mother.

Fuck that noise. I’m busting through the glass ceiling of colds and having Wo-Man Colds from now on. I’m going to be the Rosie the Riveter of colds. I’m going to be the Sally Ride of colds. This is an act of radical feminism, and I want you to join me in it.

Say it with me: when I have a cold, I will rest. I will not do the dishes. I will not fold the laundry. If my husband tries to ask me for help, I will tell him I’m too tired and that I know he can handle things on his own while I get well. I will not cave to the pressure for perfection when what I really need is rest and fluids.

Now go blow your nose, get a cup of tea, and take a nap, for feminism!

White Privilege and Metastatic Breast Cancer

Recently I was reading a great article about a young mom who was diagnosed with metastatic breast cancer, and there was a link in the article to the SEER data on breast cancer. (For those who don’t know, the SEER database tracks everyone who gets cancer.) I decided to geek out and surf the data, because statistics are fascinating to me. I found this chart that shows 5 year survival rates for different cancers, broken down by race and age, and it made me feel really uncomfortable.

One of my favorite former coworkers is a really nice woman named Z. I loved working with Z because she always communicated so well–and those of you who have ever held a job know exactly how awesome it is to find someone who communicates well. Z met her husband, M, in the elevator of our office building, and they are the sweetest couple. Z is African-American, and she’s retiring this year, so I can say without letting out any big secrets that she is over 50 (although she doesn’t look it!).

According to the statistics from the SEER database, the odds that a white woman under 50, like me, will be alive 5 years after a metastatic diagnosis is 36.2%. For an African American woman over 50, like Z, the odds are only 13.8%. That means I am almost 3 times as likely to survive 5 years with this disease than a woman like my friend Z. If she was under 50, like me, she’d be in better shape, but she’d still only have a 22.7% chance of being alive 5 years from diagnosis, significantly lower than my odds.

What. The. Fuck.

I’m trying to wrap my head around what’s going on with this data. There are probably¬†genetic influences in cancer deaths–black and white women both have higher death rates than Asian, Pacific Islander, Native American, and Latina women. The data about Native American death rates was especially surprising to me because it’s pretty rare for white women to have higher death rates than Native American women from any illness–access to health care on reservations in particular is pretty shitty compared to what I can get as a middle class white woman with health insurance living in a major city. But given the higher incidence of BRCA genes in women of Ashkenazi Jewish descent, and given the higher incidence of triple negative breast cancer in the African American population than in other populations (triple negative breast cancer is particularly deadly), it appears that genetics are playing a roll.

That said, researchers studying this stuff say that genetics only accounts for part of the problem. The other part is access to treatments. Here’s where shit gets fucked up: in a cancer where there is very little science can do to treat it, like pancreatic cancer, the death rates for black and white folks are pretty similar. For breast cancer, where there actually is stuff they can do to treat it, oh look, black folks are dying at higher rates than white folks. You can also see this in the way that the racial disparity in breast cancer survival has grown over the years–as new treatments have come along that extend the lives of metastatic breast cancer patients, the 5-year survival rates for white women have gone up significantly more than they have for black women.

And now we see the real problem: it’s poverty in the black community and lack of access to adequate health care that’s killing people faster. And poverty in the black community doesn’t come out of nowhere; it comes from generations of racist policies, starting with slavery and continuing through segregation and redlining, that has led us to where we find ourselves now: with black women more likely to be living in poverty, and thus dying of metastatic breast cancer at close to the same timeframes they were in the 1970’s, while white women are living longer with their disease because they can afford health care.

Now, Z is solidly middle class, like me, and she has good health insurance, so if–god forbid–she ever got metastatic breast cancer, hopefully her odds would be better than if she was living in poverty. But the problem is this: that doesn’t make me feel any better about this disparity. Z’s life has just as much value as mine, and it’d have just as much value as mine if she was poor too.

Women leaving their children motherless because of lack of access to health care should not be happening in a country as well off as ours. It’s morally wrong. I’m going to say that again: it is morally wrong that access to life-saving, life-extending medical care is only available to people with money, and doubly so because of our country’s completely fucked up history of keeping black people poor.

We have to do better than this. We just have to. Women’s lives are at stake.

Let’s Write a Book Together

You guys, I’ve got an idea, and I need your help. I think it would kick ass to put together an anthology of essays by people living with metastatic breast cancer. I have absolutely no idea how to put an anthology together, like, none whatsoever, but isn’t it a great idea? If you agree, and you’d like to contribute a piece or edit the book or you have a book agent or you run a publishing company or whatever, I’d love to hear from you. Drop me a note at cultofperfectmotherhood@gmail.com.