Disability Benefits and Bureaucrazy

So, like a lunatic, I have been working, or, more like, trying to work, through my cancer treatment. Which basically means that when I am not at a doctor’s office or recovering from chemo, I go to my office and do what I call The Hug’N’Chat. The Hug’N’Chat means that lots of my coworkers come by and hug me and ask how I’m doing and want to know how treatment is going. Then they chat about work or their kids or whatever, and then they leave and the next Hug’N’Chatter comes in. I’ve been given a lot less work to do because, (a) I am so rarely at the office, and (b) when I am there, I don’t get that much done because I am so busy doing the Hug’N’Chat. I am handling a little work, but it’s fair to say I am not pulling my weight at the office these days.

At first, I thought this was going to be temporary–I’d have my chemo, they’d put me on hormone therapy, and I’d hopefully live a while longer, but there wasn’t much to do in the way of treatment because I was Stage IV, so I’d likely be back at work a lot more. But now that the docs are throwing around words like “cure” and “aggressive treatment” and “off the reservation,” it’s become clear that I don’t have time to go to work. Juggling 3 jobs–attorney, parent, and cancer patient–is just not feasible in the long term, no matter how kind and sympathetic my office has been. (And boy howdy have they been sympathetic! Honestly, people’s kindness floors me, again and again.)

So, luckily for me, I am eligible for disability retirement from my job, and for SocIal Security Disability Insurance. Most employers these days don’t offer disability retirement–I happen to work someplace that has a pension, and disability retirement is part of that. SSDI is something everyone who pays into Social Security is eligible for. Now, I am lucky–I have a spouse with a good job, and my disability retirement will make this whole thing not so painful of a transition. I get to keep my health and life insurance, too. But if i didn’t…

Let me paint a picture for you. You’re a single mom of two kids, ages 8 and 4. One day, you have a stroke. You’re gonna live, but work is not going to be part of your future anymore. So, you apply for SSDI. Somehow you navigate the online system, or maybe a friend helps wheel you down to the Social Security office in your neighborhood, and you fill out the paperwork. 5 MONTHS LATER, you finally become eligible for benefits. That’s not because of a backlog, folks, that’s written INTO THE LAW. You literally do not become eligible for benefits until you have been disabled for 5 months. So, how are you and your kids supposed to eat in the meantime? How are you supposed to pay your rent or your mortgage? What in the actual fuck?

Better still, now that you can’t work, you’re going to have to kiss your health insurance goodbye, huh? And guess what? You can qualify for Medicare once you qualify for SSDI…but only after two years. TWO YEARS ARE YOU FUCKING KIDDING ME?!?! So right when you are disabled the most, in need of the most medical care, you lose access to a system to pay for it? WHAT IN THE ACTUAL FUCK?!?!

Folks, these are stupid rules. And like all rules, they were made up by people and they can be un-made-up by people. All it takes is someone to care enough to write a letter to their member of Congress. Every day. For the next 3 years. Until it changes. Who’s with me?

Grown Up Movies for Kids: Little Women

It’s rare for The Girl, who is, after all, only 2, to really get into these grown-up movies for kids. So it’s even more rare for both her and The Boy to both love the same grown up movie. So, this one is a real gem: Little Women. In this review, I’m talking about the version with Wynona Ryder, because it’s on cable all the time, but the version with June Allyson is delightful too.

Let’s go through our list of things that frighten people off from showing grown up movies to their kids: Sex, nope. Swearing: nope. Violence: nope. It doesn’t get any more sweet and pure than Little Women.

I’m not sure what it was about this movie that made The Girl like it so much. It pains me to say this, but perhaps it was the dresses, which are hoop-ish and probably remind her of Sophia the First (shudder). Except, here are girls who clearly aren’t princesses, and that’s what I love about this movie. They struggle for money, and yet they do incredibly kind things like give away their Christmas breakfast to the poor German family that has even less than they do. They rely on the kindness of neighbors, they sell their hair so they don’t have to ask their mean aunt for money, and they work odd jobs to make ends meet. And they’re happy–not that they’re perfect and not that they don’t sometimes wish for more, but they know that they have each other, and that’s way more important than having a palace. It’s like the lesson Sophia pretends to be teaching (“remember how happy we were when we were broke, Mom? Let’s try to recreate our life of poverty, except in a palace!”).

I will also point out that this is a movie about sisters learning to be different instead of competing with each other. They all have different skills–Meg is a nurturer, Jo is a writer, Beth is a musician, and Amy can paint–and somehow, they all admire each other without being all that envious. I mean, they’re not saints and of course they have their moments, but everyone is proud of Jo’s book, and Amy’s painting, and they all celebrate when Beth gets that piano for Christmas. This is a life lesson we all want our kids to learn–find your passion and do it, without worrying about what your sibling is doing. It’s especially important in my family, where it have one child who has a disability and is going to face challenges in school, and one who appears not to.

Is this movie a bit overly sweet? Of course it is, but you know what? I am so sick of movies where people are fighting and shooting at each other, not to mention movies with exactly one female character in the whole film. Here is a movie about women and girls, and it’s charming, and my kids found it charming too. So, set aside your snarkiness for an afternoon and smile at people loving each other for a change. Think of it this way: how many movies are there where sisters, or other women, are mean and just shit on each other all the time? How about we counteract that with a little kindness?

A Cancer Update: Goodbye Booby!

One of the things that BLOWS about cancer care in this country is how shitty we do at treating people with metastatic disease, like me. The standard protocol for breast cancer that isn’t metastatic is surgery, then chemo, then radiation, then years of drugs to hopefully keep your cancer from ever coming back. It’s pretty effective–5-year survival rates for non-mets breast cancer are pretty high.

When you have metastatic disease, though, things are different. Doctors don’t talk about curing your cancer, they talk about extending your life. And that’s probably because there isn’t that much money spent on research on metastatic cancers. Shitloads of money get spent on early detection so people don’t end up Stage IV like me, which is good, prevention and early treatment kick ass…except, none of that research led to the detection of my cancer. I had to find that tumor myself. And now it would be pretty awesome if some of those research dollars that did me no good could be spent on saving my life instead. Hey Congress, you listening?

But I digress, and I didn’t mean for this post to be angry or ranting, because actually, I bring up the “we don’t talk about cure” stuff because a couple weeks back, I met with a surgeon who DID use the word “cure” to describe how she hopes my case will turn out. I nearly fell over when she said it. Hope, as Tim Robbins says in the Shawshank Redemption, is a good thing, maybe the best of things. The surgeon will be doing her part to make it happen by slicing off my asshole boob that’s been trying to kill me.

Here’s the plan: in a few weeks, the surgeon, who I now love almost as much as my medical oncologist, is going to do a mastectomy of my left super-tumorific breast, and also take out my lymph glands on that side, all of them. I’m not having reconstruction yet–it slows healing time. We’re still waiting on my genetic testing to come back, to find out if there is a genetic component to my cancer, because if there is, they’ll take the other breast too, since it’ll be likely to try to kill me later on down the line. And I’d do reconstruction at that point. If I don’t have a gene that’s causing this shit, they’ll let righty be.

After the surgery, they’ll probably do radiation on where-the-boob-was, which is another reason not to do reconstruction at the same time as the lopping-off. Now, the upside to more radiation is this: if they’ve done radiation on your chest, it makes everything more taught, so they can’t use implants. So instead, they give you A TUMMY TUCK and use that fat to fill up your boob. All my tiny boobed ladies: ever looked at your belly and thought “If only the fat would accumulate in my boobs and not on my belly.” I AM GOING TO LIVE THAT DREAM YOU GUYS!!! It won’t be for a while, but still, I am totally stoked.

And of course, they’re scheduling all this around our family trip to Disneyland in August. (Where my LA readers at? You should come stalk me, I’ll be there during Half Marathon Weekend.) The surgeon said I can absolutely go on roller coasters post-op. She said no swimming pools if I still have the drains in, but the white water raft ride is fine. And she specifically said to go on Tower of Terror.

The nurse who did my intake paperwork for the surgery team asked how I am feeling about surgery. I said “excited” and she was like “Oh! OK…” And I said “I bet you don’t get that reaction much, huh?” And she said, “Not frequently, no, but once in a while. Usually from people in your situation.” Yes, mets patients are really happy when the doctors haven’t given up on us. I want my cancer gone, and I am really glad my doctors want that too, and are willing to try to help me reach that goal.

Beth’s Classic Film Club: It Happened One Night

Get your popcorn and your box wine, it’s time for a classic film! And it’s a funny one, too, because don’t you need a laugh? I sure do!

It Happened One Night has two of my favorite actors, Clark Gable, who’s sexy as fuck, and Claudette Colbert, who’s gorgeous AND funny. Colbert’s a debutante whose dad doesn’t want her to marry a rich guy named King (no really, that’s his first name), so she runs away. Gable’s a reporter who recognizes her and decides to help her along so he can write a story on her. Hilarity ensues.

In one scene, Gable undresses and it is revealed he isn’t wearing an undershirt. Supposedly, undershirt sales in America immediately plummeted. Literally, Gable was that hot.

Part of what I love about this movie, and a lot of movies from the 30’s, is that its theme of poverty contrasted with wealth rings so true today. And the movie isn’t strident about it, it’s clearly a comedy, and nobody triumphs over their poverty like you usually see in movies today. Poverty just is, and wealth just is, and everyone knows it’s unfair, and nobody knows how to fix it. They just know how to survive. I really feel like a lot of the movies of the 30’s, and especially this one, are ripe for a remake during the Great Recession.

I could also give some background on the studio system, and how these two stars wound up in this film, and how nobody thought it would be a hit, but it was, because it’s amazing. But whatever, you can look it up on Wikipedia and that backstory isn’t really important. What’s important is how great Gable and Colbert are in this film. It’s funny and poignant and fantastic. Just, go watch it, would you? And tell me what you think in the comments!

What’s Treatment Like: Radiation

Dude, radiation oncology has got to be the weirdest experience of my life. And that includes any crazy shit I did in college. Now, again with stage IV, radiation isn’t always part of your treatment plan, because when you’re stage IV, that means cancer cells are floating around your body and latching onto other body parts than where they started, and making tumors all sorts of random places. Like, mine wound up on my sternum and the top of my femur, by my hip, so, really far from my breast. So, typically, you use chemo to treat stage IV because it’s a systemic disease and you need systemic solutions.

That said, if your tumors are causing you pain, or are likely to weaken a weight-bearing bone, then yeah, they’ll do radiation on there for you. But only as pain management, not as as part of a systemic treatment of your cancer, because radiation only zaps the spot where the tumor is, not your whole body. In my case, my femur is a weight bearing bone, and both it and my sternum hurt, so, zap zap!

Now, the first step in preparing for radiation is what the nice radiation techs called the Arts and Crafts portion of my care. First, I put on a gown and lay on the table of a CT machine, and they exposed the areas to be zapped, in my case, my sternum and my hip. The two techs stood there and stared at me thoughtfully, then they made little marks on me with sharpies. Then they thought and stared some more, and then more sharpie. Then they ran me in and out if the CT machine a few times, and then, more staring and more sharpie. Eventually when they had figured out exactly where they wanted to line up the radiation fields, they gave me the saddest tattoos ever. Just a blue dot. I have like 8 or 10 of them. The good news is, they didn’t really hurt much. I’ve had IV’s worse.

Oh, I almost forgot: at the start of arts and crafts time, they stuck a blue plastic bag under my legs, and they filled it with this weird warm goo, which rose up around my legs and then hardened to form a mold. They used that mold to hold me still for the zapping, so my legs and hips were all aligned just right. Precision is definitely the key here–you want to zap the tumor, not, say, your large intestine.

After all that, I came back the next day to start the treatments. And I shit you not, when I walked into the radiation room, the Bee Gees were playing on their CD player. Apparently when they built the room, they didn’t pipe in any kind of pandora or anything, so all they have is a CD player, and I happened to be there on a day that the 70’s CD was playing. Like the whole experience with the sharpies and the tattoos and the blue bag of goo wasn’t surreal enough, let’s add How Deep Is Your Love, shall we? It was all I could do not to giggle through the whole thing.

Oh, and if I felt like I hadn’t had enough sharpie during Arts and Crafts time, no worries, there was plenty more sharpie during the actual treatment days. The techs and I had nice chats about our plans for the weekend while they drew all over me. Once they had me marked up and lined up and shifted 7 millimeters this way or that, then everyone left the room and I listened as Earth Wind and Fire came on the CD player and the machine did its thing.

So, I had 10 zaps each on my sternum and my hip, for a total of 10 days of treatment, and I’ll be darned if the pain didn’t go away! Those weirdos in radiation oncology sure know what they’re doing. My hip is still a little sore, but more like when you need to stretch, not when I walk and put pressure on it like it did before. And the sternum doesn’t hurt at all.

And, they sure are nice, because at the end of my treatments, they gave me a very nice radiation graduation certificate that they all signed.


See? Weird, but nice.

Grown Up Movies for Kids: Strictly Ballroom

Baz Luhrman is a genius. A post-modernist genius. I like post-modernism. Don’t know what that is? Moe Szyslak calls it “Weird for the sake of weird.” But I’d call it material that references earlier art, but creates its own meaning out of it. What I like about Baz Luhrman’s post-modernism is that it’s not just weird for the sake of weird. It IS weird, but it’s also got a purpose. What does all this have to do with a grown-up movie for kids? Well, today’s movie is Strictly Ballroom, a very strange film indeed, but one that is surprisingly kid-friendly

Let’s go over the things that scare people off of showing their kids a grown-up movie: sex, swearing, and violence. None, almost none, and none. And, let’s go over things that we’ve established that The Boy likes: sports movies where you root for an underdog and there’s a big victory scene at the end. Sure, it’s ballroom dancing, or “dance sport” as it’s called in the movie, and not a traditional sport, but hey, it’s the same themes, right? Here you have a guy who wants to win, but do it his own way. He has integrity and he has mad dancing skills.

The Girl actually liked this movie too, I think because it’s so visually stimulating. I mean, there’s people in really brightly colored clothing moving around a lot in practically every scene. And the female lead in this movie is no push over either. She’s not fearless, but she is brave, and she goes after what she wants, and gets it in the end.

I also love that this movie, like Secretariat and Rudy, is to some extent about the underdog, the outcast, the geeky/housewife/little guy/outsider, sticking it to the asshole jocks/popular kids/meanies. Kids eat that shit up, man, and it’s a lesson we all want them to learn: when you see someone being treated unfairly, stick up for them. Give them a hand up. And then maybe spin them around the dance floor while you’re at it.

What’s Treatment Like: Chemo

I have gotten lots of questions about the treatment I’m getting for The Cancer. So, let me explain how it’s working.

First off, I’ve gotten chemotherapy. Lots of women with breast cancer have a mastectomy or lumpectomy first, and then chemo, and then radiation. Not so when you’re stage IV–we gotta treat the tumors everywhere in my body, not just the breast. So, I get chemo first, and other treatment later. Because my flavor of cancer has neuroendocrine features (I have no idea what that means except it’s rare, especially in the breast), I’m not getting the most common breast regimen. Instead, they have me on cisplatin and etoposide, which my doctor says is an extremely tough regimen.

What does that look like when we say ” an extremely tough regimen”? Well, here is how a 21-day chemo cycle looks for me. Day 1, a Wednesday: I go to my doctor’s office and plop down in a recliner. They access my portacath (or port for short) with a IV thingy, and start pumping me up with fluids, because cisplatin will ruin your kidneys if you don’t flush them before and after treatment. So, after the fluids, they give me some killer antinausea meds, including a steroid called dexamethasone that can cause perianal burning unless they give it to me slowly. I also get a nausea med called Emend, and finally, my good buddy lorazepam. Then they give me the cisplatin.

By this time it’s about lunch time, so The Hubs (who comes to all my treatments) runs out to grab us lunch. I usually am only hungry for half of it, because round about that time, by body says “Aaaaannnnnd I’m spent” and I fall asleep in the recliner with my nice handmade quilt and my comfy neck pillow that smells like Christmas. (Yay for cancer gifts!) I wake up when they switch me to the etoposide, and usually I get up to go pee sometime in there a time or two, wheeling my IV stand along with me. Then it’s back to snoozeville until the next bag change, an IV of fluids again (must flush those kidneys!), and then eventually they unplug me and send me home, where I sleep some more. By this point, I’ve been there all day.

That’s day 1. Day 2 and 3 are just etoposide, so no kidney-flushing fluids, and no emend. Just the anal burning steroids (that thankfully have not yet caused any anal burning) and the lorazepam. So, it’s a much shorter day, just a couple of hours, but I usually nap anyway, because dude, living with chemo drugs in your body is EXHAUSTING. Like, I thought I was tired when I was pregnant, ha! Hahaha! This is way more so. I never slept 18 hours a day when pregnant.

As for the nausea, man, I am on so many nausea drugs, it really isn’t that bad, as long as I take them. One day this cycle, I waited to take one because I knew I’d be getting that one at chemo time that afternoon, and that was stupid. I will not make that mistake again. I haven’t puked yet but my appetite is definitely off. Like, when I was pregnant, the smell of certain foods would make me queasy, and that’s happening now too. I also get halfway through a meal and just don’t want any more.

I said it’s a 21 day cycle, right, and I described days 1-3. Then what? Well, day 4 and 5 (the weekend) I’m still pretty tired and still really need the nausea meds. Day 6 and 7 I start to have a teeny bit more energy and usually by day 8 or 9 or 10 I feel mostly human again. Tired, but not, like, can’t get out of bed tired, can’t concentrate tired. Just worn out, like after having the flu.

So, usually by day 12, I’m back at work, trying to catch up on everything I missed while I was away. Although, I end up with so many doctor appointments, it can be hard to actually have time to go to work. Having cancer is like having a second job, frankly.

Now, in terms of longer term treatment, my doctor plans 4 cycles of this chemo regimen, and then we see what happens. I’ve been through 3 so far. After the fourth one, we see what the tumors look like, and come up with a next step. Because I am young, and otherwise healthy, and the chemo seems to be shrinking the primary tumor quite nicely, I may end up being a candidate for surgery, or I may have more chemo first, or I may have hormone therapy, or all of the above. To say the plans are up in the air at this point would be a gross understatement, but my doctor is talking to other doctors and we hope to have a more solid plan sometime soon…ish.

Stay tuned for my next installment: radiation therapy!

Cocktails with the Cult: Irish Up Your Coffee

Back before we had kids, The Hubs and I used to travel to distant places that require long plane rides. In 2005, we took a cruise around the British Isles with my parents and some friends, and man, that trip totally kicked ass. We met some awesome friends on that cruise who have remained our friends since then, even though they live far away–thank goodness for the Internet!

One of our stops on that cruise was in Belfast, and we took this amazing tour where we drove around the city, hung out at the Giant’s Causeway, saw Dunluce Castle, had lunch in a pub, and stopped at the Bushmills Distillery, where we bought a very nice bottle of Irish whiskey.

Now, I am sure my Celtic ancestors are rolling over in their graves, but I am not a big whiskey drinker. It burns, man. But that Irish whiskey we bought is fucking smooooooooov. I’m told that Irish whiskey, unlike Scotch, is triple distilled. I have no idea what that means except to say that whatever they did to this fancy can-only-be-bought-at-the-distillery stuff? It made it go down easy. Even I can drink it on the rocks. That said, my favorite way to drink it is in an Irish coffee.

Some people think Bailey’s in coffee is an Irish coffee. NO NO NO and FUCK NO. Bailey’s is a lovely thing, it’s great in coffee and milkshakes and cheesecake and whatever. But when someone offers to Irish up your coffee, they’re gonna put Irish Whiskey in it, not Bailey’s. And, they’ll probably use Jameson because they aren’t from Ulster and they aren’t unionists. And that’s OK too. Personally, my ancestors came over to America from Ulster after surviving the siege of Derry, and they were Protestants, so I have no qualms about drinking my orange whiskey. But I don’t mind a little Jameson’s either, because I love a good democracy overturning a monarchy. So just buy whatever whiskey you like.

Irish coffee, like many things of beauty, is pretty simple. Start with good coffee. Add in a shot of Irish whiskey. If you like your coffee sweet, add in some sugar. If you want it fancy, add whipped cream. If you want it really fancy, like, for a party or something, get a Celtic knot stencil and shake some cinnamon onto the whipped cream so it has a fancy pattern.

And there you have it, Irish Coffee. Sláinte!

What Women Need: An End to Domestic Violence

I bet you thought I couldn’t get more Debbie Downer than talking about The Cancer all the time. Hahaha! You clearly underestimate me.

Lately I have seen a lot of Facebook memes that say something like “Like if you know it’s never OK to hit a woman” over a picture of a woman with bruises. That shit makes me CRAZY. I really think that the meme-ing for “awareness” of issues like domestic violence is one of the stupidest things we do nowadays. Like, dude, if you don’t know by now that it’s wrong to hit people, I am pretty sure a Facebook meme isn’t gonna teach you that lesson. Also, I mean, way to make a victim’s pain into something trivial like some shitty meme people share on the Internet. Seriously, that person with the bruises? Yeah, she’s a person. Perhaps like-farming with a picture of a woman with a black eye is, shall we say, uncooth?

Which is also why I don’t usually watch TV shows that portray domestic violence. Because domestic violence isn’t entertainment, and most of the portrayals of it that you see on TV are not really about education or raising money for shelters or whatever. They’re about selling advertising, like pretty much all TV shows are. It just creeps me out to know someone is making money off of images of something that traumatic.

Also, I’m not a huge fan of showing us over and over again that women are victims. I feel like in this millennium, we see more women as heroes too, but the whole victim thing hasn’t gone away at all. I just feel like seeing pictures of women being abused, I mean, is that really helping us, as women, to see ourselves as empowered? I personally don’t find it empowering, I find it terrifying, and depressing. Because, what fucking year is this that we’re still putting up with this shit?

Back in 1997, when I was in college and was being a left-wing-radical-mobilizing-force-of-one, me and some friends and classmates went to a march on the National Mall on domestic violence. We carried life-sized bright red silhouettes of women who had been murdered by their partners. I honestly don’t remember what policy changes we were advocating for, or if it was to raise funds, or what. It’s been 14 years since that march, and women are still dying.

How do we make it stop? Well, that one seriously complicated question with a seriously complicated answer. First, we have to make it safe for women to leave their abusers. A woman is more likely to die at the hands of her abuser if she leaves than if she stays. Yes, you read that right, she is more likely to be murdered if she leaves. We need more shelters, and safer ones, with adequate funding, so no woman who has the courage to leave finds herself turned away because there is no room at a shelter. We also need better police protection for women who leave, and stronger laws to lock up the assholes who do this to people they claim to love. Police groups agree and are working on this very issue as we speak.

We also need treatment for offenders. Putting people in jail is a temporary measure. It doesn’t change their hearts and minds. It doesn’t teach them empathy. It doesn’t make them see women as human beings and not property. We need to find the men who do this shit, and deprogram them.

As women, this isn’t something we can do alone. Just like we can’t do it with Facebook memes, we can’t do it without the support of the good men in our lives. This has to be something we convince men to care about. And many do. There actually are great organizations out there right now doing that very work, like Men Stopping Violence.

I guess what I’m saying is, women are dying. Right now, as I type this. Facebook memes aren’t going to fix it, but real change, and real help for survivors of abuse, CAN make a difference. So, the next time you see a picture of a bruised woman come across your newsfeed, don’t just scroll by or click like. Write to Congress, or donate to an organization that is making change. Because women’s lives are at stake.