Author: Beth Caldwell

Cocktails with the Cult: The Godmother

Posted on by Beth Caldwell

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

Posted on by Beth Caldwell

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

Posted on by Beth Caldwell

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

Posted on by Beth Caldwell

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

Posted on by Beth Caldwell

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

Posted on by Beth Caldwell

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

Posted on by Beth Caldwell

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.

Life at the Base of a Cliff

Posted on by Beth Caldwell

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

Posted on by Beth Caldwell

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

Posted on by Beth Caldwell

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.