Tired

So I’ve been exhausted all this week, like, lay in bed all day tired. So I finally texted #bestdocever and said “Seriously I’m so fucking tired.” (Yep, we text, and we swear. Reason #583 why he’s #bestdocever.) Turns out my hematocrit is 25.9 today, which explains the fatigue, and I’m having a transfusion tomorrow.

When I’m this fatigued, my feelings tend to wash over me in ways they don’t when I’m feeling well. A friend told me today that leaning into it when it washes over you is a good idea, and that’s really good advice, so here I am, writing this post, hoping that processing will make me feel better. Here is what I’m feeling right now.

I hate that I can’t do stuff for my family, like a simple chore like doing the dishes, because I’m too tired. I hate that when I do try to do a simple chore, I feel winded like I’ve just run a marathon. I hate that I smell terrible because once again I was too tired to take a shower–and I hate that after a shower, I need to lay back down because I’m exhausted from the effort of taking a simple shower.

And even more so than any of that, I hate how I feel emotionally when I’m so tired. I find myself hating the life I’m living. Last week I had my regularly scheduled brain MRI, and I wasn’t even that nervous about the results, because I knew my tumor markers were still dropping and I knew it would probably be fine (and it was)–but I hated having to go have another scan, another IV, another day when I was tired and yet had to drag myself out of bed, out of the house, to lay in machine for another half an hour. 

It washes over me how this is my life, this is going to be my life for the rest of my life, there will never be a time when I’m not getting scanned and poked at least every 3 months. This will go on for the rest of my life. I will always be living this half life, desperately trying to stay alive, not able to participate fully in the world, knowing all of this, all the treatment, will be futile someday.

I know I’ll feel better after the transfusion I’m having tomorrow, and that it’s really hard to live with the ongoing trauma of living with metastastic cancer, and it’s even harder when I’m physically down. I’m not into woo woo stuff about mind-body connections, but the reality is that when I’m physically weak, I have a lot more trouble being emotionally strong. Which is why it’s really just a rough time when I’m this fatigued.

I found myself apologizing to some friends for being pretty absent lately, and one of them said, “Don’t ever apologize to us again.” And when I heard that, I burst into tears, in a good way this time. I need to remind myself that my friends don’t expect me to be Superwoman. They know this shit is HARD and they’re OK with me not being that cancer patient who’s standing on top of a mountain being like “I refuse to let this slow me down.” That it’s perfect OK with them, and they’re not disappointed at all, when I can’t be that person. It’s a relief to know I’m not letting them down. 

The Hubs says the same thing, too, when I tell him how useless I feel. He points out that I DO contribute to the family even when I’m feeling so down, and that I’m not letting him down. That he knows I’m not perfect, and he loves me anyway. All this support is so powerful, and it keeps me going when I’m at a nadir.

That’s it, I’m done now. Processing over, letting go of my guilt, and resting and hoping tomorrow brings better things. Like blood and energy and a return to my sunny disposition.

I love you Twitter but sometimes you confuse me.

I joined Twitter a few years back, when I used to write a blog about the horribly sketchy bus I used to ride to and from work. I figured with Twitter I could share interesting vignettes about what happened on the bus, like the time I learned that you shouldn’t get kicked out of rehab in the winter, because if you’re on the street, your heroin might freeze. Or the time a pimp passed out onto my lap. Good times. 

But to be honest, I never really “got” Twitter until maybe the last 9 months or so. Like most middle aged moms, I’d log onto it and be like “I have no idea what I’m doing and none of my friends are on here” and walk away from it. Then, suddenly, it just clicked for me, and I was finding more people whose content was interesting to me, and suddenly I came to love Twitter.

I now have awesome Twitter friends, most of whom are other cancer peeps, and we really have conversations there. I also use Twitter to keep up with information about cancer research and to connect with other folks working in the field of cancer. And of course, I follow a lot of very funny mom bloggers on Twitter too, because who doesn’t need a good laugh sometimes? I also participate in quite a few Twitter chats on healthcare topics, especially the weekly BCSM and BCCWW chats when I have time. It’s cool to virtually hang out, especially when fatigue keeps you in bed a lot.

I find my Twitter feed is waaaaaay better than my Facebook feed. The Facebook algorithm is horrible. It shows me a lot that I don’t care about. I love that Twitter is just a raw feed, and because everything is only 140 characters, scrolling past the unnecessary stuff is easier than it is on Facebook. If Twitter had all the bells and whistles of Facebook (the groups there are pretty sweet), and if all my friends were on Twitter, I’d probably abandon Facebook entirely.

Still, there are things I don’t get about Twitter. Sometimes I wonder how some of my Twitter followers find me. Like, a few months back, an Irish member of the European Parliament followed me on Twitter, and I was like “Dude, that’s so cool! Wait, how did she find me?” We didn’t appear to have any followers in common or to be following any of the same people; I didn’t see anything in her issue areas that had to do with cancer. I still don’t know how she found me, though I’m honored that she (or more likely one of her staffers) did.

Then there’s like the weird random users that find me seemingly just to try to get me to follow them back. Like, there’s a cancer zodiac sign one that keeps following me and then unfollowing me and then following me again, as though this time I might be like “Oh, yes, I do want to follow you” even though I’m a Libra. Like, fix your search, dude. Last week, a Florida-based law firm specializing in personal injury and criminal defense followed me, as did a Seattle area home building company. Both of those had me scratching my head, especially the law firm. Like, I’ve never been arrested and I don’t have cause to sue anyone–especially not in Florida. 

Recently someone whose user name was in a Cyrillic alphabet followed me. I looked at what they post and it was all click-baity articles, in English. I wonder how much money one can be paid to create random Twitter accounts and go around following random people hoping they’ll follow you back, and then posting stuff that needs page views? 

And of course, there’s my really big question: why hasn’t Taye Diggs followed me? He follows freaking EVERYONE, but not me. Like, he probably follows that cancer zodiac person, and not me. What did I ever do but love you, Taye Diggs?!?!? Do you know how many times I’ve listened to the Rent soundtrack?!?! 

Are you guys on Twitter? Do you get random people following you that you can’t imagine how they found you? Does Taye Diggs follow you?

OMG THE BOOK IS COMING!!!!

You guys!!! Tomorrow is book launch day for I STILL Just Want To Pee Alone! I’m completely freaking out! That means that you can order a copy from Amazon! It also means that book signings are coming!

If you live in the Seattle area and you want a signed copy of the book, well, you’re in luck! I’ll be speaking at this year’s Taste of MamaCon, which happens on April 4 at Verity Credit Union HQ. It’s free, but you need a ticket, which you can get here. I’ll have a table there where you can buy a copy of the book if you haven’t already, and I’ll be signing books there too, along with the amazing Rebecca Gallagher.

Can’t make April 4? No worries, because we’re also doing an event we’re calling Garden Party Book Club–it’s a book signing/cocktails/jazz event at Sole Repair on Capitol Hill on May 4. Did I say jazz event? I sure did–the amazing Emily Asher’s Garden Party is coming back into town and they’re playing a show at our book signing! Or, we’re having a book signing at their show? Either way, tickets are $15 and are available at Brown Paper Tickets. I know it’s a weeknight, but don’t worry, we’re starting at 6:30, because we’re old ladies and we can’t stay up late. Rebecca will be there too, as will the awesome Tracy DeBlois, and I’ll be wearing an incredible ensemble styled for me by the amazing Dana of dMarie Vintage. Will I be sipping a cocktail while wearing vintage purple suede gloves? You bet your sweet ass I will. I might even swing dance. BAM.



Can’t make either of those? No worries, because we’re also going to be at MamaCon on May 15, which is the weekend after Mother’s Day! Rebecca, Tracy, and the stupendous Michelle Back will all be there, because we’re the Friday night entertainment. We’ll each be reading something funny from our blogs, and then we’ll be selling and signing books. The Friday night festivities are free, but if you only come for Friday night, you’re really missing out on the awesomeness that is MamaCon. The speakers on Saturday are going to be amazing, plus you get free spa treatments with your ticket price! Heck, there’s even going to be a dance party Saturday night. A DANCE PARTY. Seriously, you guys, just go get your tickets already, would you?

And if for some reason none of that works for you, well heck, drop me a line and I’ll see if I can connect with you. Got a book club? I’ll come to it. Your PTA board need presents? I’ll come to your meeting and sign books there. I’m that committed to this book. It’s filled with amazing writers and I’m incredibly proud to be a part of it.

Shameless Bragging

Something awesome happened last week: I found out that an essay I wrote is going to be in a book. An honest to god real paper (or e-reader, if that’s your thing) book. Like, a book you can buy and I can sign and my kids can physically hold in their hands someday. It’s called I STILL Just Want To Pee Alone, and it’ll be available this spring. If you read the first I Just Want To Pee Alone, you know it was good stuff–funny and poignant and just overall rad. And this new one is going to be fucking amazing too. When it becomes available, you can bet I’ll be sharing info on how and where to get your hands on a copy, and where you can meet me and some of the other authors so we can sign your copy for you.

I am so fucking proud of this. And I plan to shout it to the rooftops. You know why? Because it’s something to be proud of.

I feel like a lot of us, women in particular, think it’s not OK to brag about their accomplishments. We’re supposed to be like “I’m so humble, I don’t mean to toot my own horn” and shit. Men too somewhat, but seriously women. I can’t tell you how many women I know who have some big success but don’t feel like they’re able to say how proud they are of it.

And I’m going to say something that is going to probably lose me some friends, but I don’t care: I think part of why this happens is other women’s reaction. All too often, we don’t celebrate each other’s victories. And I think the reason we do this is because women in particular feel like we’re competing with each other for resources. We make less money than men. Women writers are often pigeon-holed as “chick lit” when the same book with a male author would be seen as “real” literature. When the pie is so small, it’s easy to feel jealous when someone else gets a slice, and easy to say “She doesn’t deserve that.” This is how we, as women, fall into the trap that patriarchy has set for us.

How do we get out of that trap? Well, step 1 is realizing that celebrating other women’s successes does not diminish our own. When we see our fellow women writers having success, we should cheer for them. We should say “I am so proud of you, my friend.” That is some powerful shit right there. I’ve had a lot of women say that to me since I found out about The Book, and it helps me overcome the pressure from society to pretend like it’s not a big fucking deal to have this kind of success. And I do the same for my friends who have successes. When I read a blog post I love, I share it. When we support each other, we make our community of women writers stronger, not weaker.

The second thing is harder. We have to learn to tune out people who tell us not to celebrate our successes. It helps to have role models who do it. My favorite college professor, Bonnie Morris, always tells me about the cool work she’s doing, like being published over and over, and lecturing at international conferences, and being invited to the White House for bill-signings. She’s proud of her work, as she should be, and every time I hear her talk abut it, I think, “I can be proud of my work too. I don’t need to act like it’s wrong to be proud of my accomplishments.”

So, am I bragging about this? FUCK YEAH I AM. I’m proud of this, and of every other writer whose work will be in the book. We’re badasses, and there’s nothing wrong with saying so.

Let’s Write a Book Together

You guys, I’ve got an idea, and I need your help. I think it would kick ass to put together an anthology of essays by people living with metastatic breast cancer. I have absolutely no idea how to put an anthology together, like, none whatsoever, but isn’t it a great idea? If you agree, and you’d like to contribute a piece or edit the book or you have a book agent or you run a publishing company or whatever, I’d love to hear from you. Drop me a note at cultofperfectmotherhood@gmail.com.

A Sense of Purpose

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

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.

The Truth About Losing a Breast

One of the things that writing does for me, that I do for myself by writing, is find meaning in the things I am experiencing, in the feelings I have, in the world around me. I find if I write about things, it helps me gain a deeper understanding of them. In that way, writing is like therapy–it’s a way to process things so that they become clearer, because if they are clearer, they are easier to work with.

I know I’m dealing with something really complex when I can’t find the words to explain it. It doesn’t happen often, and when it does, I find it really disorienting, and frustrating. And that’s where I’m at since the mastectomy. Losing a breast has impacted me emotionally in a way I don’t have words to describe. It’s not just how it looks, but it is partly how it looks. Because, it looks awful.

And before you pull a John Legend and say “you don’t know you’re beautiful” please just stop. This is not me putting myself down here. MY BREAST IS GONE. Like, seriously, under no circumstances is that a good thing. It’s a shitty thing to lose your breast, an ugly thing. Was it a necessary thing? Absolutely. Would I do it again given the same circumstances? Fo sho. Is it still depressing and awful to look at the physical manifestation of my fight against cancer and what it has cost me? Of course it is.

From now on, when I look at myself in the mirror, I will have to be reminded of The Cancer. Hair grows back, gray in my case, but still there, and easily dyed if I really gave a shit about it. Breasts, on the other hand, do not grow back. Even after reconstruction, they bear a scar, and they have no feeling. The Cancer will always be with me now, even if I am lucky enough to get to a point of having no evidence if disease, which would be a big win for someone who is stage IV. Even if the doctors can’t see cancer anymore, I will always see it.

Before I had the surgery, this was my biggest fear, that I would only see The Cancer when I look at myself in the mirror. And now it has come true. I don’t see myself in the mirror anymore, I only see The Cancer.

When I try to talk to people about what that feels like….I don’t know, the words just aren’t there. I am usually the queen of the analogy, like, I can usually compare what I am feeling to something everyday, so folks can understand it. But I can’t even begin to say what this is like. I’ve never experienced something like this before, so I have nothing to compare it to.

I will say this, I hope this is temporary. A wise friend said to me that when you have a trauma, it takes time to incorporate it into your psyche and while that is happening, it’s hard to live with. And I think that’s probably true, that at some point I will carry cancer without being only cancer, just as the NICU has become part of me without dominating me. But man, it’s hard in the meantime.

A Year of Deprogramming

YOU GUYS! It’s my one year blogiversary! And now I will wax philosophical about writing, and sisterhood, and The Cult.

I feel like in the past year, I have noticed a change in the world. I feel like I run into less Judgy McJudgersons, and more…well, I haven’t coined a term for the opposite of Judgy McJudgersons yet, have I? How about we call her Ms. Awesomesauce? Ms. Awesomesauce does stuff like finding support for a friend who she worries has postpartum depression. Ms. Awesomesauce tells everyone that her friend’s house may be a mess, but it’s cool because the friend is focusing on what is important: spending time with her family. Ms. Awesomesauce calls out a Judgy McJudgerson when she meets one, but in a non-assholic way, because she knows we are all stronger if we come together as moms and support each other.

The best part of this last year of writing has been the amazing community of bloggers I have joined. You may not realize this if you’re not a blogger, but when you start a blog, and other bloggers hear about it, they come read your blog and start sharing the things you write that resonate with them. And they tell you how much they loved a particular piece, and WOW, does that feedback feel good! And I do the same for them, because we are all stronger if we come together as writers and support each other.

I am not a big-time blogger. I just write whatever comes in my head, not wondering “will people like this” because I am not making money off of this. If you read much of what I write, you can tell that it’s clearly therapeutic for me to be writing my blog, especially since The Cancer. So, I don’t really worry about trying to reach new readers or page views or whatever. I just spew out some stuff filled with typos and call it a day. Which is why it is all the more amazing to me that there are so many of you who DO read what I write, and say nice things about it. And it makes me feel stronger, because in this space on the Internet, we have come together as people who support each other.

So, thanks for being so Awesomesauce, you guys! And here’s to another year of fighting The Cult!

I have a good excuse to be flaking out on everything for a while

So, I got diagnosed with breast cancer on Wednesday.

No, that’s not the start of some sick joke.

Last week, I found a lump in my breast. They scanned it on Monday and said it looked extremely suspicious, so they did a needle biopsy. The results came in on Wednesday. As of last night, I am Stage III, with more tests to be run.

I’m now in doctor appointment hell. I am being poked, scanned, drawn on, and turned radioactive. So many people have squeezed my boob. SO MANY.

Right now, it looks like this will be a tough fight. Right now, things are dark here. But not as dark as the anger that is fueling my fight. Cancer doesn’t realize who it is fucking with. I will destroy it. I will strangle its babies, drown its pets, and burn its house down.

I will be blogging this, too. I can’t NOT write. But everything is a little raw at the moment, and I’m not ready to share them yet. Also, I’m literally at so many doctor appointments, it’s hard to find the time. So, expect some of my regular post topics for a bit longer.

I don’t say this enough, but I think you guys know just how much you, my readers, mean to me. I love you and I am grateful for you. I hope you’ll stick with me through this ride.