Fucking Cancer

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.

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.

A Sense of Purpose

Posted on by Beth Caldwell

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

Posted on by Beth Caldwell

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.

“Your hair looks great!”

Posted on by Beth Caldwell

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.

Cancer Update: Thankful for Thanksgiving

Posted on by Beth Caldwell

You guys! It’s been a while since I’ve given a treatment update, so here goes. Feel free to ignore this post if this stuff bores you, and just know I’m doing great right now.

You may have seen me live-tweeting the CT scan I had instead of the PET my doctor wanted to run–that happened a week ago. (Are you not following me on Twitter or Facebook? Your loss.) We got the results the following day at my oncologist’s office. The appointment lasted FOREVER because we spent the vast majority of it talking about TV shows (my oncologist and I both love Luther) and my oncologist’s upcoming vacation to Hawaii and a very good bakery on the big island. Because, that’s what we do at my doctor appointments, because my oncologist is rad and we’ve become friends–he even came to Emily’s show. Pro tip: if you’re Stage IV and you can’t make friends with your oncologist, you have the wrong oncologist–who wants to spend that much time with someone and not actually like them?

But of course, we talked about the CT scan too. So, the downside to a CT vs. a PET scan is that a CT finds all the stuff that is out of the ordinary, but it can’t tell you if that stuff is probably cancer. So, like, there is a spot on one of my vertebrae that the CT found, and it showed up on the tests they did in preparation for my radiation this fall. The spot hasn’t changed shape or size or anything since then, so it’s unlikely to be cancer, because it probably would have changed size or shape or whatever if it was cancer–either it would have grown if the chemo I had during radiation didn’t work on it, or it would have shrunk if the chemo did work on it, but instead, it did neither. So the radiologist thinks it’s a bone island (which is the dumbest name for a real thing I have ever heard–it made me think of a brain cloud) and nothing to worry about, but a PET would probably have given us a clearer “don’t worry about it” call than a CT. Fucking insurance.

Besides the bone island, the scan spotted my metastatic tumors on my hip and the on my sternum, and found them to be looking like someone beat them up. Again, if my fucking insurance had approved a PET scan, then we’d know how much of those tumors were cancer, and how much was just scar tissue. But a CT can’t show that, so, fuck if we know what’s going on. Like, good that they look like they’ve been beat up, but how beat up? We dunno.

The best news from the CT is that my remaining lymph glands from the breast system (the ones that can’t be reached surgically, because they cut out the rest) were “unremarkable.” (Pro tip #2: if a medical test uses the world “unremarkable,” that’s good.) And there was nothing else on my scan that needed discussing–no new tumors, and nothing left of the old tumors in my breastal area.

So, to sum up: oh hey look, there’s where we found the bone cancer in the spring. We don’t know if it’s all still cancer or not, but at least it looks like it’s not so bad? Thanks, insurance assholes!

That said, I mean, with no new tumors, and my metastatic tumors at least not growing, this is good news. When you’re stage IV, stable disease is good news. It means cancer isn’t winning. And if cancer isn’t winning, then I’m OK.

Which means, the plan for now is, just keep on keeping on with the aromatase inhibitor, and start looking into clinical trials. Next year I’ll be on a new insurance plan (my insurance is changing networks and my oncologist will no longer be in network–thankfully as a retired federal employee, there are a lot of plans to choose from and my doc will be in network with one of them) and if I’m reading their plan brochure correctly, I won’t need preauthorization for a PET scan, which means no more of this fucking around with inconclusive CT scans bullshit come the new year. And my oncologist is happy with me staying on the AI for three months and then doing a PET scan, and then deciding on our next steps for treatment.

So, the good news is, no chemo for Christmas, or for Thanksgiving, and that is definitely something to be thankful for. When this shitshow began, I wasn’t sure I’d see Thanksgiving, let alone be spending it feeling good and able to make my own turkey and mashed potatoes and turkey and OM NOM NOM WHERE ARE MY EXTRA STRETCHY YOGA PANTS. Happy Thanksgiving, you guys!

People Say The Nicest Things When You’re Dying

Posted on by Beth Caldwell

Since my diagnosis, I’ve gotten some amazing gifts, including the coolest gift ever, but I’ve also gotten notes from people with incredibly kind words. One friend shared that she would probably never have become the strong feminist she is if she hadn’t met me. Another said that my non-judgy-ness got her through a very rough patch in her motherhood. One of my coworkers said at my retirement party that I am the best lawyer he’s ever worked with. I had no idea these folks felt that way, until they wrote me those notes. It means a lot to me that I’d touched their lives.

The thing is, why DIDN’T I know they felt that way? It’s because we don’t usually say these things to people until they’re dying. And then suddenly, we forget all the bad shit, and just focus on the good. You forget the million times I stuck my foot in my mouth or was catty or dropped the ball and didn’t show up to help when you needed it, and you remember the time I got you drunk when your boyfriend dumped you and told you that you were so money and you didn’t even know it.

I’m not dying today. As I told my oncologist the other day, I’m feeling the best I have since this shitshow began. Except, I kind of am dying, just in very very very slow motion. And that’s why people send me these notes saying how much they love me and what I mean to them, when they haven’t ever done anything like that before–because I have a terminal illness.

But the thing I’ve learned from having that terminal illness is this–we’re all dying. All of us. Not one of us is going to get out of life alive. We just don’t like to think about it, because we hope it’s so far off in the future, but one day you will be dead. As Bill Shatner said, “This may come as news, but…you’re gonna die. You’re gonna die. By the time you hear this, I may well be dead. And you, my friend, might be next. ‘Cause, we’re all gonna die.”

I’m gonna say this. I think it’s crap that we have to wait until we’re aware that we’re gonna die, before people tell us all these nice things about what we mean to them. That’s total fucking bullshit, you guys. Seriously, this should not be a perk of having cancer, to have people tell you that you’re awesome. It should happen every day. You should be going out and telling the people who have meant something to you, who have been there for you when you needed it, that they’re awesome and that you love them. I should be doing it too, and I haven’t been, but I’m going to now. Because, we’re all gonna die.

Homework: every day, say something nice to someone who has meant something to you. I’m not saying you should look up that ex-boyfriend who treated you like shit–I’m saying, the people in your life who you love, but you haven’t told them so, you should tell them so. Tell them thank you. Tell them what you admire about them. Imagine they’re dying–because really, they are–and give yourself license to forget the dumb stuff for a minute, and appreciate the good. It’s gonna make them feel good, and it’s gonna make you feel good too.

Fuck you, health insurance industry

Posted on by Beth Caldwell

It was only a matter of time before the honeymoon between me and my insurance company ended. I mean, I know how much love I felt from them when they approved my genetic testing (other friends I know with cancer had theirs denied), but I could tell my insurance was starting to feel differently when they approved just 3 weeks of post-mastectomy radiation instead of the 6 my radiation oncologist asked for. But it wasn’t until they denied me a PET scan that I knew our relationship had really soured.

Here’s what happened. My oncologist, who you all know by now is both awesome and a genius, submitted a request for my insurance to cover a PET scan to see how much cancer is left after all the treatments I have had this year, so we can figure out what to do next. The idea was, if there isn’t much cancer left, or if by some miracle the scan was unable to find any evidence of cancer, then we keep me on the anastrozole and just watch and wait for it to come back. (Stage IV is like roaches. It always comes back.) if, on the other hand, there were big ass tumors, then we’d want to do some more chemo. Treatment decisions being based on evidence, seems reasonable, yes?

Not according to my insurance. They denied the scan. Their letter didn’t say why, just denied it. My oncologist has now submitted an appeal, but we had to cancel the scan scheduled for today, because who the fuck knows when it will get approved, if ever.

Here is the thing. This sort of crap happens ALL THE TIME. And the reason it does is because insurance is a for-profit industry. It exists solely to make money. My care costs them money. A lot of money. So, they keep those costs down by denying me care. It’s as simple and completely amoral as that.

Now, maybe you believe that insurance companies have a right to make a profit. Let’s leave off for a minute that they are companies, and they shouldn’t have rights because they aren’t people, they’re companies. Instead, let’s talk about how their right to make a profit compares to my right to have life-sustaining health care. When these two rights come into conflict, whose right should win? The corporation’s right to money, or my right to life?

Let me also say this. A lot of people oppose a single-payer, government-insured health care system because they fear government bureaucrats denying them needed medical procedures. And yeah, government can be seriously bureaucratic. But, my insurance company is filled with bureaucrats denying me a needed medical procedure. It takes months to get appointments with specialists, just like it does in a socialist country’s health care system. How is the system we have any better than our worst fears about a government-run system?

Until we design a health care system that isn’t built around insurance company profits dictating how my doctor practices medicine, we will continue to have shit like this happen. It’s wrong, and it has to stop.

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!