Cancer Update: Thankful for Thanksgiving

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

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.

Feminist Warrior Fridays: Ava Gardner

OK, look, you guys. I know I was all “I’m gonna write about some women who may not seem to fit the definition of a feminist by today’s standards” and y’all were probably thinking, “Neat, it’s gonna be someone who is a little bit conservative but still clearly an advocate for women’s rights.” But when I said “not a feminist by today’s standards,” I actually meant it. And thus I give you one of my favorite women of all time, Ava Gardner.

I became fascinated with Ava when my grandfather told me about meeting her. My grandfather was a chiropractor and early on in his medical career, he worked for a casino hotel in Reno, in the early 1950’s. Frank Sinatra was staying at the hotel, and he had a headache, so they sent my grandfather up to Sinatra’s suite to give him an adjustment, and Ava Gardner was there with Sinatra. My grandfather described Ava thusly: “She was the most beautiful woman I ever saw in person, but she had a mouth on her like a sailor.”

Holy shit, you guys, she’s one of us!

Ava grew up poor in the rural south before being discovered in New York and coming to Hollywood, where she worked very hard to become a famous star. She herself would have readily acknowledged that she was no great actress–she wasn’t a Katherine Hepburn or a Bette Davis or even a Lana Turner. Instead, she was just plain sexy.

And here’s where the pearl clutchers will say “Sexy and untalented? That’s not a feminist!” And that’s where I say FUCK YOU. Ava was a woman trapped in an era where women had almost zero power, particularly in Hollywood. Her first husband, Mickey Rooney, cheated on her almost immediately after they got married, including while she was in the hospital having her appendix out, but she had to get permission from the damn studio to divorce his cheating ass, or risk ruining her career. That’s the world Ava lived in, a world where powerful men could tell her she had to stay married if she wanted to keep her job. Are we going to say “you’re not feminist enough” because she used the one tool she had to gain power–her sex appeal? Are we? Because if we are, we’re assholes.

One way we can express feminism is by crossing the boundaries of what it means to be feminine, because one of the ways patriarchy controls us is by requiring women to adhere to arbitrary, unrealistic standards of femininity. Ava was a boundary-crosser. She fucked who she felt like in an era when women weren’t allowed sexual freedom. And she swore like a sailor, which is still seen as unfeminine in many circles. On top of that, she took the patriarchy’s obsession with women as sex objects and used it for her own personal gain. That’s a pretty dangerous game to play in 1950, and pretty damn subversive.

Was she a perfect person? Hell no! I’m pretty sure if you look up “alcoholic” in the dictionary, there’s a picture of Ava there. But she was a strong woman with a drive to succeed, and I really wish I could have met her. Like Julia, I think we probably would have been good friends.

As always, if there’s a feminist warrior you’d like to see me profile, leave her name in the comments!

Fuck you, health insurance industry

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

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

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.


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

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!