A Study In Frustration

Posted on by Beth Caldwell

You guys, I’m going to share with you a tale of woe. Everything I’m about to tell you is true, and complicated, and this is gonna be long, but I’ll try to explain it as clearly as possible. Here goes.

The Office of Personal Management (OPM), which is the federal agency that does HR type tasks for the government like handling our health benefits enrollment and our retirement paperwork, approved my disability retirement because of my cancer (perk of stage IV: you get to take a disability retirement. Downside of stage IV: you’re gonna die of your disease) on August 20. Although I had planned to stay on the payroll and use up donated sick leave during my radiation treatments in September, OPM’s rules required me to retire either at the end of the pay period that August 20 fell in, or the one right after. I chose the one right after, which is why September 6 was my last day as a federal employee.

Now, the letter they sent me when they approved my disability retirement back on August 20 said that I “should receive” my first retirement annuity payment “within 10 days of your agency certifying your last day in pay to us.” OK, I thought, so I retired September 6 (that’s a Saturday), I got a big ass packet of paperwork from my agency the following Thursday, and so I expected to receive an annuity payment at least by October 1, which was when the next batch of annuity payments were scheduled to be paid by OPM. (You get your payment once a month, at the start of the month.)

October 1 came and went. We cashed out some savings to cover bills. I emailed OPM to report the missing payment. October 6, I called OPM because I still hadn’t gotten paid, and had gotten no response from OPM. I sat on hold for 40 minutes, and then the nice person who answered the phone said that OPM had not received my SF3100 form from my agency, and thus they couldn’t process my annuity payment. She said to call my agency and find out what happened.

So, I called the nice woman at my agency who had handled my paperwork, and told her what OPM said. She was HORRIFIED. “But I faxed it to them, they require us to fax it, so I did, why didn’t they tell me they didn’t receive it, I’m SO SORRY, I will resend it today, I’m SO SORRY.” OK, I thought, it must just have been some kind of fax-related snafu. It stunk to have to dip into savings, but whatever, it was going to be processed now that she was re-sending the form to OPM.

October 9, I tried to call OPM to ensure they’d gotten the re-sent form, since OPM clearly wasn’t going to initiate any communication and it was going to be on me to make sure things got to where they needed to go. And I got a busy signal. A busy signal. I’m not even kidding, folks, a busy signal. I couldn’t even get in the queue to wait 40 minutes on hold. So, I sent them an email instead. I got an auto-reply that said they would respond to my inquiry within 15 business days. 15 BUSINESS days. That’s 3 weeks, folks, plus an extra day because, for reasons surpassing understanding, Columbus Day is still a thing.

I kept trying to call OPM, because there was no way in hell I was gonna wait 3 weeks to find out if they’d gotten the form, and then have to wait 10 more days to get paid. And I kept getting a busy signal. Finally I got through to OPM on October 15. Another 40 minutes on hold, and I spoke to a woman who said that my file had just that day been “fully realized” but the system didn’t say it was going to go into a pay state, so she wasn’t sure what was happening with it. And she had no idea if my SF3100 form had been received or not. Then she said, “Call back in 2 weeks once your file has landed. It’s on the move today and I don’t know who in the new department will receive it, so I can’t put you through to anyone. So call back in 2 weeks, by then it will have landed.” She kept using that word, landed. I was now picturing my file flying through the air, tied to a balloon, floating around in a giant limestone cave.

Yes, I said limestone cave. You won’t believe this, but OPM literally processes federal employee retirement paperwork in an abandoned limestone quarry in western Pennsylvania. It’s a big ass cave, folks, that’s where our paperwork is. Also, the software they bought to try to automate some of this stuff? It didn’t work right, so they abandoned it and they do a lot of the calculations manually. It’s basically 1974 down in that cave, and the workload is ridiculous–they just don’t have enough people to do the work. So, it’s really common for federal employees not to get paid, or not to get their full pensions paid, for prolonged periods of time. I had a coworker whose retirement calculation was complex because he’d worked different places and had worked partly under the old system and partly under the new one, and it took a year for him to get his full retirement payments. And they only got done THAT quickly because he called his senator’s office and asked them to intervene on his behalf. And then suddenly his stuff was done in a matter of days of calling his senator’s office. I sure as hell wasn’t going to wait a year to get paid. So, I called my senator’s office.

At this point, I want to publicly thank Patty Murray’s staffers for being perfectly delightful, efficient and professional in their dealings with me. Please don’t make this partisan–I am a liberal, it’s true, but I hope if Senator Murray was a Republican, I would have been met with perfectly delightful, efficient and processional staff as well.

Anyway, I call Senator Murray’s office, and I tell the nice receptionist that I’m a federal retiree having problems with OPM processing my disability pension. And he said, “Oh sure, we help with stuff like that all the time. If you go on our website, there’s a form to fill out to get help with a federal agency–just send us that and our OPM person will hopefully work their magic for you.” OPM person. Her office literally has an OPM person. That’s how bad OPM’s retirement processing is, that she has an OPM expert. I mean, Washington State has a decent number of federal employees, but it’s not like we’re DC or Virginia or Maryland, where federal employees make up a big chunk of the population. And yet, our senator’s staff includes someone who deals with requests from frustrated federal retirees “all the time.”

So, I send in the form, via email because it’s the 21st century and her office didn’t require it be faxed like OPM apparently does, and on the following Monday (that brings us up to October 20), I call her office to make sure it was received. The very polite receptionist checked their system and confirmed that yes, my form had been received, it had been assigned to a staffer, and I should get a notification from them as soon as they had sent their inquiry about my case to OPM. See? Efficiency.

I called OPM again that day too. At first I got a busy signal. Again. But I called back in later, and this time I waited on hold for a mere 30 minutes. The nice person on the phone said that my file had moved to “interim pay status” on the 15th (you will recall that that’s the day it was flying around the limestone cave), and I should receive my first payment by November 1. Which was still inconsistent with the letter they sent me, but at least things were moving in the right direction.

The next day, I got a letter from OPM saying what my interim annuity amount would be, so I checked my bank account and there was my first annuity payment. Huzzah! I did a victory dance around my house.

At this point, I’d like to play a little what-if game. What if, instead of having Stage IV cancer, I had been hit by a bus and was now cognitively impaired, and that was the reason for my disability retirement? And say, instead of being married to a great guy who can help out with paperwork snafus, I was single? Who would be handling all this calling of OPM to find out that they hadn’t gotten a form and that they hadn’t followed up with my agency about it and asking a senator’s office to help out? How would that work? Would I ever have gotten paid?

It’s not OK for government to work this way. I know there are plenty of folks out there who say “That’s just how government is, you can’t fix it, it’s just always going to be inefficient and bureaucratic and have crappy customer service.” NO. I worked in government too long, and I know too many good, smart, caring, dedicated people working in government now, to believe that government MUST be this way. It’s this way because it’s starved of resources and run by incompetent people, and nobody calls them out on it. Patty Murray’s office runs efficiently because Congress gives her a budget to hire a competent staff to handle the workload, and because if they didn’t, it’d be all over the news. (And lest you think that government agencies have a monopoly on being run by incompetent people who don’t put resources into customer service, try talking to your cable company sometime. Or your credit card company. Or Facebook’s customer service team.)

I feel especially strongly that OPM and other agencies that take care of federal workers (like the Veterans’ Administration) shouldn’t work this way. OPM’s job is to take care of the people who take care of the American public. Federal employees are cops and forest rangers and civil rights investigators and social workers and nurses and doctors and PEOPLE WHO HELP PEOPLE. It is literally the least we can do to provide them with the benefits they have EARNED by their service to the American people. It is unacceptable that OPM operates this way, and it has to change. It HAS to change.

The Coolest Gift I Have Ever Received

Posted on by Beth Caldwell

You guys. I have gushed before about how awesome my friends are, and how they gave me amazing presents and paid for a cleaning service for us when I got cancer. I don’t mean to minimize their kindness or their awesomeness, because it is very appreciated, but I think you will all agree that this gift from my friend Emily is, by far, the coolest gift I have ever received. The gift is this: she wrote me a song.

WROTE ME A SONG ARE YOU KIDDING ME?!?!

When Emily sent me an email with the rough cut of the song and told me she wrote it for me, she said that if I didn’t like it, she wouldn’t tell anyone it was for me, but, she wrote it for me. And I listened to it and cried and FREAKED OUT and said “ARE YOU FUCKING KIDDING ME” like 3o times during the song because seriously, the song is fucking amazing. Like, the lyrics are fucking amazing, and the melody is perfect–it’s so upbeat, but then there’s this one moment where there is a minor cord and you’re like “Ohhhhhh, she hasn’t gone off her rocker, she’s just putting on a brave face.” So I emailed Emily back and I’m pretty sure I used the phrase “are you fucking kidding” (I say fuck a lot) and told her the song is perfect and I love it and this is by far the coolest gift I have ever received.

As if that wasn’t enough, she dedicated the album to our family. You see, Emily’s brother is Mr. E, of cocktail and death threat fame. Which means, Emily grew up with The Hubs and can tell all kinds of crazy stories about the shit Mr. E and the Hubs did that would get them arrested if they were doing it today.

If you asked Emily why she wrote the song for me, she’d tell you it’s because of something I did for Mr. E’s daughter back in 2012. Mr. E’s father in law was in the hospital, and Mrs. E was there with him, and away from their infant daughter, which predictably led to breast milk supply issues. Unfortunately, their daughter is, like Mr. E, a connoisseur of fine foods, and thus refused to drink formula. Just flat out refused. They were starting to panic when The Hubs said, “Hey, let’s give them some of your milk.” I was such an overproducer that the milk was overtaking our spare freezer by then, so I said, “Great idea!” So, Mr. E drove the two hours up to our house and took a couple coolers full of the stuff, and that got them through until Mrs. E could get back to their daughter and get her supply back up.

To me, it was no big deal to give that gift. I mean, what was I gonna do with all that extra milk anyway, make ice cream? It felt like they were doing us a favor by taking it off our hands. But to Mr. E’s family, that milk was liquid gold. It helped them get through a very rough time, and they were incredibly grateful. So grateful that Emily wrote on my copy of her album “I will be forever grateful for what you provided for” her niece.

We all have talents that we don’t think of as being that big of a deal, but to people who are in need of those talents, they are HUGE. And I didn’t know it, but I needed this song. It is nourishing my soul in a way that I can’t even begin to express. I have many redeeming qualities, but jazz-musician-level coolness is not one of them–but it is a quality that Emily has. And that song is just really fucking cool. Emily is craaaaaazy talented, and her band is just really fucking good.

If you are in the Seattle area this week, and you’d like to hear Emily and her band, Emily Asher’s Garden Party, play my song live, then come to the Triple Door downtown tomorrow, Wednesday November 5. It’s an all ages show and I’ll be there with The Hubs and an entire entourage of people, including a couple of bloggers you may follow (you’ll have to come to the show to find out who!), two of my cousins, and my adorable oncologist and his lovely wife. You can buy tickets here, or at the door. I would love to see you guys there! And if you’re not in the Seattle area, you can buy her album and find out when her band is playing in your area, and even listen to my song, at their website.

Emily, thank you for this gift. You are amazing, and your family has meant so much to The Hubs over the years. We love you!

A Perfect Life

Posted on by Beth Caldwell

I read an article recently that really set me off. The article itself isn’t really that important, but the reason for my anger is. It was the author’s attitude towards people with disabilities that made me want to pick up a pitchfork. Because, I feel like we really haven’t made much progress in this area in the last 100 years.

You know, before I had a disability, and before I had a child with a disability, I was a civil rights attorney and the bulk of the cases I handled involved kids with disabilities. And before I finished law school, I spent some time working for a disability advocacy agency that represented people with disabilities, primarily folks living in institutions but also folks living in the community. Which means I know a bit more than the average joe about how we, as a society, as a country, have treated people with disabilities over the past hundred years or so. Let me drop some knowledge on you.

Our country has a pretty fucking shameful history of acting like people with disabilities are sub-human. I think a lot of people know that the Nazis did some really bad shit to people with disabilities–awful experiments along with outright murders, just like they did to Jews, gay folks, and anyone else they saw as a threat to their perfect society. What people may not know is that right here in the US of A, we also used to routinely sterilize people with intellectual disabilities. Because we thought people with disabilities would have babies with disabilities (we really didn’t understand how disabilities happen). Our society saw people with disabilities as a threat, just as the Nazis did–that the more of them there were, the weaker we were, and we couldn’t have that.

That may seem like ancient history in the era of the Americans with Disabilities Act, but I feel like there’s still a sense in our society that if you’re not perfect, you’re a failure. I see it with The Boy all the time. He gets really upset that other kids are better at sports than him, or that he struggles to focus in class. I also see it in the way people treat my friends whose kids have disabilities. It’s with a sense of pity that their kids aren’t ever going to be at the top of their class.

And I feel like that pity, that view that it’s so sad that people have disabilities, that it’s such a shame they can’t do what others can do, is a branch of the same tree that produced Oliver Wendell Holmes’ sentiment that “three generations of imbeciles is enough.” (Yes, he actually said that. In a Supreme Court opinion signed off on by 8 of the 9 justices on the Court. Buck v. Bell, 1929.) It’s a world view that says everyone must be the same, everyone must be “perfect,” and if they aren’t, they are not our equals. They are The Other.

I know I haven’t written about the Cult of Perfect Motherhood in a while, but remember how one of the tenets of it is that you must strive for perfection at all times, otherwise you are a bad mother? But what does perfection look like? How do we measure it? Is it kids who get straight A’s? Is it a mom who never takes any down time? What if your kid’s disability prevents him or her from ever learning to read? Does that make you a failure as a mom? What if I have cancer and I get tired a lot, so I need more breaks than other moms? Does that make me a failure as a mom?

We have to let go of judging people’s achievements by the same standards. We are all different. Some of us live with limitations, but it doesn’t mean our lives have no meaning. It doesn’t mean we should be thought of with pity. We must begin to see people with disabilities as people just like everyone else, not as less-than. It’s 2014, for christ’s sake.

Homework: I’d like you all to read No Pity, by Joseph Shapiro. It’s a history of the disability rights movement, and I hope it will blow your minds and get you talking and thinking about people with disabilities in a different way. Let me know what you think of the book in the comments!

Cocktails with the Cult: Rumnog

Posted on by Beth Caldwell

The holidays are coming, and that means it’s eggnog season! Fuck you pumpkin spice, eggnog is where it’s at. It’s got the spice of pumpkin spice in it, without all that healthy pumpkin. Vegetables are for losers–cholesterol-laden eggs are sooooooo much more awesome.

Eggnog is tasty on it’s own and it also makes an awesome pie. (Because fuck you pumpkin.) But it really shines when you put booze in it. I mean, what ISN’T better with booze in it?

A lot of people I know like whiskey in their eggnog. But me? I prefer rum. Spiced rum, to be specific. And I call it Rumnog. The best part of this recipe is you can serve it cold, or, if you are constantly shivering like I was before they put me into instant menopause, you can heat up the eggnog first and then mix it with the rum. And as usual, you can make pitchers of this stuff if you’re serving at a party.

4 oz. eggnog (I am partial to Darigold’s eggnog, but use whatever you like)
1.5 oz rum

Stir and serve in a mug. That’s it, that’s the drink. We’re you expecting something more complex? We’re talking about me here, people, I don’t do complex. I do FUCKING DELICIOUS.

BRRREEEEAAAAASSSSSTTTTTTSSSSSS

Posted on by Beth Caldwell

Jesus, pinktober, would you just fucking end already? No? Alright, then let’s talk about sexualization of cancer. You started this, pinktober, and now I’m going to finish it.

Yes, hetero male world, we know–you love breasts. You just do. I get that. That’s why they’re fucking EVERYWHERE. You’re like fucking zombies only instead of looking for bbbbrrraaaaaiiiiiiinnnssss, you’re looking for BRRREEEEAAAAASSSSSTTTTTTSSSSSS.

But here is the thing about my breast cancer: it’s not in my breast anymore. Because I don’t HAVE that breast anymore. It’s been cut off. Still turned on?
No? Of course not, because making cancer about breasts is FUCKING CREEPY. Seriously, it’s cancer for the love of Christ. It’s not hot.

Except during pinktober. Because pinktober isn’t about people with cancer. It’s about marketing. It’s about selling t-shirts and making your fracking company seem less evil for destroying the planet and making people sick. Because breasts are sexy, and sex sells, and sex also distracts people from the shitty things your company does. Who can think about the carcinogens you’re pumping into our water supply when they’ve got breasts to think about? BRRREEEEAAAAASSSSSTTTTTTSSSSSS.

Ever wonder why there isn’t a month for esophageal cancer awareness? Have you ever SEEN a photo of an esophagus? Was it sexy? No? There you have it.

What really gets me about slogans like “save the boobies” and “cop a feel” and all the other “Hahaha, I am so witty, I made breast cancer into a sexy joke” crap that happens every October is that it doesn’t seem to be about keeping women alive or curing disease. It’s about breasts, and how important they are to heterosexual men, and shouldn’t we do something to save the breasts, because BRRREEEEAAAAASSSSSTTTTTTSSSSSS. Where are the people attached to those breasts in those conversations? Oh right, we’re NOT in those conversations, because women are nothing more than the sum of our parts. Parts that sometimes get cut off as part of our treatment for cancer. And we can’t have that happening, can we? Because BRRREEEEAAAAASSSSSTTTTTTSSSSSS are what’s important, not the people they are attached to.

I have a feeling that’s also why there is such a focus on early detection. It doesn’t ACTUALLY save lives, if you look at the data. But if you find your cancer early, you might get to have a lumpectomy instead of a mastectomy, and then your booby is saved. And what’s more important than saving BRRREEEEAAAAASSSSSTTTTTTSSSSSS? Certainly not research that saves actual lives. Lives are boring–boobs are hot.

Look. I know there are people in the marketing world who aren’t assholes. I know at least some of you must have a fucking conscience. Men of Madison Avenue, please stop living up to your stereotype, and for the love of all that is holy, just stop making my cancer into some creepy sex fetish thing. It’s fucking gross.

Beth’s Classic Film Club: Sunset Boulevard

Posted on by Beth Caldwell

You guys! Sunset Boulevard. I can’t believe we haven’t done this film yet. Like, seriously, this is one of the all-time most awesome movies ever. It’s dark and creepy and it drips with sarcasm, and it has some of the best dialogue of any film ever. How have we not done this film yet? Let’s do it now.

Basic plot: William Holden is a struggling writer who can’t make ends meet. Gloria Swanson is an aging former movie star who doesn’t realize the “former” part. He agrees to be her lover and she begins supporting him financially. The whole film is shot as a flashback, because in the opening scene, we see him dead, lying face down in a swimming pool. Dark.

Gloria Swanson is incredible in this film. She has completely lost touch with reality and believes she is still beloved by audiences the world over. Denial: not just a river in Africa. And yet, at some level, she MUST know she has aged and become irrelevant, because she is trying so desperately to hide her wrinkles, and she so desperately needs William Holden to love her, because no one else does. She is the epitome of creepy.

Let’s talk about William Holden for a minute. William Holden, so dreamy. So charming. And yet, so sarcastic. In fact, his sarcasm is so modern-feeling, you almost forget you’re watching a black and white movie. And that’s because Billy Wilder co-wrote it, and Billy Wilder was a fucking genius.

I’ve always thought a remake of this film would be cool. Like, replace Gloria Swanson with one of the many former actors whose careers were ruined by drugs or alcohol, trying to launch a comeback on the reality show circuit and peddling a shitty script that everyone is too polite to tell them is crap. And a struggling writer who wrote one good film and nothing since, and now can’t afford the rent in overpriced LA. It’s a timeless story, isn’t it? I also think it’s a film that could take on new dimensions if you mixed up the gender of the characters. A dead woman floating face down in a pool feels different than a dead man. And age is experienced differently by actors than by actresses.

Alright y’all, get your popcorn and your box wine, and let me know what you think in the comments!

On Anger

Posted on by Beth Caldwell

When I first got diagnosed with cancer, I was fucking pissed. I feel like people say “I was fucking pissed” and sometimes what they mean is, “I was seriously annoyed.” As in “That dude stole the parking spot I was waiting for, I was fucking pissed.” That’s not what I mean by fucking pissed. I mean FUCKING PISSED. Rage-filled, shaking with anger, ready to beat the shit out of those asshole cancer cells. I think I actually frightened my oncologist when I explained to him how I’m channeling Frank Underwood from House of Cards and that I was going to (spoiler alert if you’re one of the 5 people on earth who haven’t seen Season 2 yet) calmly push my cancer in front of a metro train and walk away. Because, when I’m fucking pissed, it’s a little bit terrifying.

Now, though? It’s been more than 6 months since my diagnosis, and I’m not mad anymore. I’m just not. Disappointed? Yes. Frustrated? Often. Scared? Hells yeah. But angry? Not really. And when I read stuff about cancer being a war, and like, really angry “I am going to fuck you up, stupid asshole cancer” posts, like, I don’t know. It just doesn’t resonate with me anymore.

And I think maybe part of it is this: there are wars like World War II, where we went in, we fucked up the Nazis and Japan, and those who survived came home. (Mostly. I mean, there are still bases in Germany and Japan, but like, nobody is shooting at anybody there anymore.) That’s what non-metastatic, non-recurrent cancer is like. You go in, you fuck cancer up, and you’re like “Goodbye asshole.” Remission is permanent for the majority of people with breast cancer. The Nazis never came back. Oh sure, you’ve gotta be vigilant and take your meds and watch out for those Neo-Nazis who think they can somehow bring about a Fourth Reich, and you’ve got to deal with the emotional trauma that your battle caused you, which I don’t mean to minimize at all, because PTSD is no joke. But facing death isn’t part of your daily existence anymore. It’s easier to stay pissed off during a battle of that duration, to sustain your anger.

Then there are wars like the ones we’ve been fighting near the Persian Gulf. I mean, we fought the first Gulf War, and we were like, “Hooray, it’s over, we won, and it was relatively easy!” And then 10 years later, oh wait, we have to back and do it again, only this time, it’s an ugly 8-year slog. And then 3 years after we get out of that mess, oh look, we’re headed back there again. That’s what cancer that recurs is like. You get all the PTSD and none of the “but you don’t have to take poison ever again” benefits that the WWII vets got. I don’t personally know anyone who’s had a recurrence, so, I’m not really sure if the anger comes back with a recurrence–those of you who have been there, tell us in the comments.

And then there are wars like the war on drugs. It just goes on and on and on, and it’s not likely to end in my lifetime. And everyone sort of forgets it’s going on anymore unless there’s like a big battle between the cartels or something, because, it’s just part of the background noise of our lives. That’s what metastatic cancer is like. It’s hard to stay angry when you know it’s just going to keep on going. Rage isn’t a big part of my world anymore (other than when I get shots that make me go hormone-insane). It’s just too hard to sustain that level of anger when you know it’s just never going to be over.

I think anger can be useful. It motivates people to take action, like, if Lucy Burns hadn’t been angry, she never would have accomplished all she did. But as a patient, there’s only so far my anger can take me. And frankly, I’m gonna be living with cancer for the rest of my life. I don’t want to live the rest of my life feeling pissed off all the time. But even if I did want to be angry, it’s just not there anymore.

I feel like that sounds defeatist. I think there is an expectation when we talk about badass cancer warriors that we’re supposed to be like some rageaholics drill sergeant screaming in cancer’s face or something. There are a lot of things cancer patients are supposed to be–bald, sickly-looking, but self-confident, positive, but not too positive, there has to be room for rage too. But 6 months of this shit, I have learned that cancer looks different on every person that has it. Just like every parent is different, and our choices are informed by our circumstances, every cancer patient is different, and there is no right way to look or feel.

One of my favorite cancer books is Cancer Made Me a Shallower Person, by Miriam Engleberg. She says all this better than I do, and you should read her book.

Cocktails with the Cult: Chocolate Raspberry Birthday Martini

Posted on by Beth Caldwell

You guys may or may not have known that my birthday was last week. How did I spend it? Inventing a new cocktail, that’s how! I was sitting on my couch surfing the internet and thought “Hey. I want a drink. And it’s my birthday, so it’s OK to start drinking at 3:30 in the afternoon.” Don’t judge–what’s the worst it can do, give me cancer? (It’s OK to laugh. Dark humor is the best kind of humor.)

So I thought, “Hmmm, what kind of drink.” I was out of box wine, and not in the mood for a dirty martini–I thought about it, and I really wanted something sweet. So I went to the liquor cabinet, and saw a bottle of Chambord, and thought “Raspberry IS nice. But it’s even better with chocolate.” Then I spotted the bottle of creme de cacao, and thought, “BAM.” But the two on their own were waaaaaaaaay too sweet, so then I thought, “Vodka makes everything better.” And thus the Chocolate Raspberry Birthday Martini was born.

1 oz creme de cacao

1/2 oz Chambord

2 oz vodka

I’m lazy and the vodka was in the freezer, so I didn’t even shake it with ice or anything, but if you’re feeling fancy, get down with your bad self. Serve it in a martini glass. Cheers!

Metastatic Breast Cancer Awareness Day

Posted on by Beth Caldwell

As we continue the long uncomfortable slog through Pinktober, where nearly every day brings a new crassly marketed product, we now find ourselves on the 13th, which is the day we dedicate to learning about metastatic breast cancer. For those of you who haven’t been reading my blog for a while, metastatic breast cancer is the kind I have, where the cancer has spread outside your breast area and attached itself to other body parts. In my case, we’re talking bones, but it can attach to all sorts of other places too.

Last week I became a traitor to the breast cancer community by saying I don’t think breast cancer should have its own month. Today I become a traitor to the metastatic breast cancer community by saying that I am really uncomfortable about this whole metastatic awareness thing. Before everyone gets their pitch forks, let me explain.

The Boy was a preemie, and I do a lot of stuff around World Prematurity Day, because there are still waaaaaay too many doctors performing medically unnecessary early inductions and c-sections, and the consequences to babies born early are real. So, it’s important that women become aware of those risks, so they can tell their doctors to go fuck themselves when they suggest a medically unnecessary induction at 38 weeks. (Obviously I am not talking about the ones that ARE medically necessary. I’m talking about “I’ll be on vacation next week, so let’s get that baby out now.” Yes, that stuff still goes on. A lot.) Awareness about prematurity is important because pregnant women actually can make choices that improve health outcomes for their babies.

Metastatic breast cancer, however, is not something you can prevent with more knowledge. Like, there is literally so little we know about metastatic breast cancer still, that there is nothing I can suggest you do to prevent it. I mean, eat healthy, exercise, whatever you do to hopefully reduce your risk of cancer generally? All that is good stuff, but none of it will guarantee you don’t get breast cancer, and none of it guarantees that your cancer won’t become metastatic. Even breast cancers caught early can and do come back years later as metastatic breast cancer. In fact, roughly 1 in 4 women who have early stage breast cancer will later develop metastatic breast cancer. Why? Nobody fucking knows. So, what good is awareness of metastatic breast cancer going to do you if we don’t even know how to prevent it?

Besides, what I, a person with metastatic breast cancer, need is not awareness. What I need is some scientist to figure out a cure, or at least, a way to keep me alive that doesn’t involve nausea, making my hair fall out, or mood swings that terrify everyone around me. Research is fucking expensive, and we know all that the pink shit you see at the store isn’t going to actually fund much research–it’s mostly going to pointless awareness campaigns that do nothing to help people like me. Actually, it’s mostly going to line the pockets of the person selling it, and a tiny portion is going to awareness campaigns that do nothing to help people like me.

So, I’m going to pretend that what today is really about isn’t awareness of my flavor of cancer. It’s awareness of organizations that fund metastatic breast cancer research–so you know where to send your money to make sure it actually helps people with metastatic breast cancer. If you are interested in donating to the cause of breast cancer, please don’t just go out and buy pink crap–it’s too hard to know if your money is going to research or not. Instead, donate to one of the organizations listed below (note: they did not ask me to write about them) or to another organization that funds metastatic breast cancer research. We’re the ones dying–cancer that remains in the breast will not kill you, it’s when it turns metastatic that shit gets real–and our cut of the research pie is smaller than our percentage of people with breast cancer.

First up is the Breast Cancer Research Foundation. They do just what it sounds like–raise money and spend it on breast cancer research, including metastatic breast cancer research. 88% of what they raise goes to research. That’s a shitload more to research than the big breast cancer charity whose name I will not mention for fear of them suing me. Don’t laugh, they seriously sue people for saying “for the cure” without permission. Oh fuck, now I’m going to get sued…oh well, then I guess I might as well mention that they also spend a way smaller portion of their money on research than most people realize. BRCF, on the other hand, funds research.

Next is the Mary Kay Foundation. These guys have two causes: domestic violence prevention, and women’s cancer research. This year alone, they gave to 4, count ’em, FOUR metastatic breast cancer research projects. You can donate directly (and earmark the money for cancer research, although domestic violence prevention is a pretty damn important cause too), or if you really must shop this pinktober, you can talk to your friend who sells Mary Kay stuff about products that have proceeds going to the Mary Kay Foundation.

Now, if you are curious about metastatic breast cancer and just want to know more, even though there is no information that will help you avoid this shitty condition? Well hey, I have a resource for that too. It’s the Metastatic Breast Cancer Network, and there’s tons of info on their website. I always find something interesting on their Facebook page, too. Their mission is to advocate for folks with metastatic breast cancer, like me. Your dollars won’t be wasted there either if you wanted to send some their way, but they’ll be spent on advocacy for people with metastatic breast cancer, rather than directly on research.

Just a couple more weeks of pinktober to suffer through. I think I can I think I can…

Worst Wife Ever Moment: Medically Induced Menopause

Posted on by Beth Caldwell

Small cancer update: I had my radiation, it’s done, and now I am waiting for the effects of radiation to go away so I can have a PET CT to see how much cancer is left. That’ll take a couple months, so in the meantime, I am taking an aromatase inhibitor called anastrozole, and I had a shot called leuprolide that shuts down my ovaries so they stop making the estrogen that my cancer loves so much. Which means, I had a shot that suddenly put me into menopause. Like, I had chemo-induced menopause already, but now, it’s like, all of a sudden, for real.

This is the point where the people who live with someone who is menopausal say “Instant menopause?!?! HOLY FUCK RUN FOR YOUR LIVES!!!”

Two days after the shot, after a particularly ugly-crying session just before bed, I sent my oncologist this email:

“Holy mood swings Batman! How long can I expect to be riding the crazy train from that injection? (The Hubs is really hoping the answer is ‘not much longer.’ Poor guy has a cold AND an insane wife.)”

My oncologist asked for details and asked if I had already begun taking the anastrozole, so I wrote this back.

“Lemme see, like, unreasonably angry about things that I know I am being unreasonably angry about but I am still angry, then crying because I am an asshole for being unreasonably angry, then laughing at myself for crying. Like, in the span of 5 minutes. Hubs, does that about cover it?

Yep, taking the anastrozole. (Which my iPad wanted to autocorrect to astrodome. Which is absurdly funny to me right now. Don’t worry, I’ll be unreasonably angry again here in a minute or two.)

-Beth”

Like, I am not even making that up. That’s literally what went through my brain. It was like the worst PMS I ever had, multiplied by infinity. One of the things that made me angry? That The Hubs had a cold. As if he got one on purpose? The amazing part is how, as I said, I knew I was being unreasonably angry. Like, the rational part of my brain was still there going “Damn, girl, you CRAZY” while the rest of my brain was like “SHUT UP I AM NOT CRAZY…OH FUCK MAYBE I AM CRAZY, I AM A HORRIBLE PERSON…HAHAHA I AM CRAZY HAHAHA!”

What. The. Fuck.

Maybe it’s not quite this dramatic for people who do this naturally. Otherwise, I am confused why our prisons aren’t more full of menopausal women who murdered their husbands because they got a cold. Like, for reals, you guys, this shit is not for sissies.

Anyway, after reading that crazy, my doctor was clearly terrified that I had turned into some kind of rage-bear and decided he’d better make sure nobody got mauled. I mean, who wouldn’t be terrified by my email? I obviously wasn’t kidding about going round the bend. So he wrote back a very kind “please don’t hate me for constantly making you feel like shit” email with some proposed solutions. (You know, it’s gotta be hard being an oncologist, because, yeah, all the treatments they have at least come with the possibility of making you feel like shit, and frankly, most of the ones I’ve had actually HAVE made me feel like shit.)

We exchanged a coupe more emails about my hopefully temporary insanity before the whole email conversation devolved into The Hubs and my doctor and I exchanging Youtube clips to express ideas. Because we’re all GenXers and we communicate via postmodernism. (If you can express complex ideas using nothing but YouTube clips and animated gifs, you were probably born between 1960 and 1980.) My favorite is this gem that my doctor shared. You’re welcome.

The good news is, after another day, the mood swings subsided, and nobody was murdered. The bad news is, there is a very real possibility this shit could happen again at some point in my treatment. Everyone should now send their condolences, along with protective gear, to The Hubs.