Blonds in Boots
| Blonds. In boots.
Last June I turned thirty-six and one of my well-wishers called my birthday a victory. You see, I keep forgetting that I should be dead (cancer). I guess that’s a good thing. It means I’m not dwelling on my illness. Or is it a good thing? I have the perfect opportunity to appreciate each new day as a gift and not a given. But it really just felt like another birthday. Another year closer to forty. Yikes!
See?! I should be excited that I’ll live to see forty! But I forget. I keep forgetting. When I run into people I haven’t seen for a while, the first thing they say is, “wow, you look great!” which is deliciously flattering until I realize that by “great” they mean “alive.” It’s the cousin-complement to “you look great…for thirty-six.” Oh. (sigh) Thanks, I guess.
But, really, I am happy to be alive. We all should be. Do you know how many ways we could die everyday? I do — because potential death scenarios run through my head constantly. I mean, let’s face it — it’s a fucking miracle we make it through each day. If you’ve ever ridden your bike next to a Chicago city bus, you know what I mean. Every time I pass by a bus, all I can think is, “please don’t kill me, please don’t kill me, please don’t kill me.” Chicago busses will take you out and not look back.
Birthdays are like New Year’s D you can’t help but take stock of your life thus far. I think what surprised me most this past birthday was how different my anxieties have become compared to ten or fifteen years ago (you know, my twenties). I was so anxious then about what my life would be like now. Before I knew myself better, before I really liked myself, I worried about things like being thirty and still single or gaining weight and wrinkles. Or what people thought about me. But more than anything, I worried about never knowing what I wanted to do in life.
I was a church kid throughout my teen years, which meant that I was constantly saturated with the idea of having a “calling.” I spent hours praying and searching for what I was meant to do with my life. Like most teens who can’t see beyond themselves, I felt like everyone around me was discovering their passion and calling and I was the only one who had no clue what I was supposed to do with my life. I wanted someone to tell me “this your destiny.” No one ever did, not even my own heart. All roads seemed equally alluring and so I was frozen, unable to move in any direction. I got so desperate, I actually Googled, “what should I do with my life?” Alas, Google was not the fortune-teller I’d hoped it would be.
Now, here I am at thirty-six and I still don’t know my “calling.” But, the nice thing is, I definitely don’t worry about it anymore. Turns out I’ve learned a lot about what I like to do and what I don’t from simply living out my life. I don’t wait around I put one foot in front of the other and try things to see what fits (or what will pay the rent). Getting older and getting cancer both taught me more about myself than Google ever did. There are people who know what they want to do in life from an early age. There are people that decide to be nurses or web developers or engineers. People that have professional goals and work to achieve them. There are also people who do have callings like… Buffy the Vampire Slayer or Batman.
And then there are people like me who will never be introduced by their professional title — and when asked, “what do you do?” will ramble on awkwardly about jobs they’ve had and maybe what they studied in school. And I realize now that that’ that instead of worrying so much about what I do, I can concentrate on who I am and who I want to be. And one thing I want to be — one thing I want to work on being — is grateful for every day. And maybe by my next birthday, I won’t have to be reminded that it is, indeed, a victory.
I should begin by saying that this is not a preach piece against television. I love television. I think we’re living in a heyday of television. There are so many really good, quality shows to choose from that sometimes I wish for rainy days just to catch up. And now we have Hulu, Netflix and Amazon at our fingertips making that very thing possible (the binge watching, Amazon has yet to control the weather, but I bet they’re working on it).
The TV Wasteland is that space you exist in when you watch something without intention. You aren’t turning on the TV to watch the latest episode of the Walking Dead. You’re just turning on the TV. You know, just to watch something while you eat breakfast. Or when you are overnighting in a hotel and get excited about having cable (this for all of you who gave up your cable subscription and rely solely on TV apps). You channel surf for about twenty minutes before you settle on a Law & Order SVU marathon that you end up watching long into the night because the next one starts while the credits are rolling from the previous one.
Or maybe one Saturday morning you see that Netflix has Gilmore Girls, the complete series. And even though you’ve seen the whole thing more than once, you start watching. And you keep watching for the next three days. You know what happens in every episode, but some subtle, underlying OCD demands that you watch until the end. Or there was a month when maybe you were between jobs and watched four hours of syndicated Dawson’s Creek every morning from 8am to Noon. You had cable then. You would start with your cereal and end with lunch. Except that you didn’t really end there.
You see, when you’re in the middle of watching, it’s easy to get caught up in the action and dramatic progress of the lives on screen. It isn’t until you press the power-off button that you suddenly realize you are no longer hanging out with Dawson and the gang in North Carolina. You are sitting on the couch in your pj’s – where you’ve been for the last FOUR hours. Oh god, you think, when was the last time you left the house? It’s too much. There’s too much shame. Too much feeling like life is passing you by. The house is too quiet.
You grab the remote as the panic starts to set in. Quick, turn it back on. VH1 is playing I Love the 80s again. You just need a quick fix and then you will pull yourself together, take a shower and go out into the world again. You tell yourself you mostly just want the background noise. That maybe you’ll get some things done while you watch. Maybe you throw in a load of laundry. You’re just watching while you wait on the laundry. You’re doing stuff with your life, you tell yourself.
Four more hours pass. You’ve changed positions on the couch a few times. You’ve made quick trips to the bathroom and kitchen, but you don’t dare turn the TV off now. It’s starting to get dark and you’ve completely forgotten about the load of laundry you started. When you remember, you have to run it again because it’s started to smell a little moldy from sitting in the washing machine all day. It seems pointles you might as well admit that you are in for the night. Plus, you have to finish that laundry. You’re having a stay-in-and-do-laundry night, that’s all. Maybe you’ll even take a bubble bath. Paint your nails. You’ll start the bath at the next commercial break, maybe.
When you look up at the clock it’s 10pm and you decide you might as well climb in bed and finish watching there. Around 1am you start getting tired enough that you can turn off the TV and not think about the day. You fall asleep and wake the next morning to catch the next episode of Dawson’s Creek. You’ll just watch while you eat breakfast, you think.
Cancer sucks. Everyone knows that. But even the shittiest circumstances can have their upsides. These are some of the perks of getting the big “C”:
Sweet, sweet narcotics. Sure, you have to take a handful of laxatives with your Morphine and Dilaudid if you want to poop more than once a week (or at all). But nobody bats an eye when you ask for opiates to be injected into your IV. And that’s pretty boss. Just don’t go getting addicted. You might never poop again.
Pre-boarding at the airport. When you have cancer, you’re allowed to pre-board. You know, when they invite those that need extra time to board? That’s you. You always get space in the overhead bin and you don’t have to stand in the aisle for a half an hour waiting for the people ahead of you to get their things settled. Whatever you do, though, do not make eye contact with the people boarding after you. Just put on your headphones and keep your eyes glued to your book. You’ll feel their resentment, but you won’t have to acknowledge it.
Care packages. It’s crazy how much stuff people send you when they find out you have cancer! All the socks, beanies, scarves, puzzle books, and bubble bath you could ever want. Some people even send money (which is good because cancer is fucking expensive).
You never have to pick up the check. People always offer to pay for your coffee, your movie ticket, your lunch. They always want to pick up the tab. I guess because they’re thinking you might die any day and it’s the least they can do. So, go ahead and order dessert. You’re gonna throw everything up anyway.
You get a minimum of 100 likes on everything you post on Facebook. More if you include a selfie in your hospital gown while hooked up to chemo. This is great…at first. Then it gets a little weird. You start wondering if people actually like your posts or if they just feel bad that you have cancer. Try posting something really racist or bigoted one day – just to test if people are actually reading your posts or just clicking “like” as they scroll down their newsfeed. You might also learn which relatives of yours are actually racist.
You have the ultimate excuse to get out of things. Chores, conversations, your job, relationships, showers. “Sorry, I can’t do the dishes. I’m just really tired from the chemo. Because…you know…I have cancer.”
You get thin. Too thin, really. And I guess this isn’t an upside for everyone. But sometimes it’s nice to not have to do lunges to stretch out your fresh-out-of-the-dryer jeans for once. It’s a perk until you realize you lost muscle along with the fat and now it’s hard to walk up stairs.
You can eat whatever you want. Unfortunately there’s not a lot you want to eat and everything tastes bad. But if you want ice cream for dinner, you get ice cream for dinner. Unless you’re surrounded by people that pressure you to fight cancer with food (my mom). Sorry, mom, I’m not cutting out sugar or eating 100 oranges a day. I’m eating ice cream, ramen noodles and macaroni and cheese. Because cancer sometimes gives you the palate of a poor college student.
You may have libido issues at times (not an upside), but you are encouraged by doctors and therapists to masturbate and maybe watch some sexy movies and fool around a bit (upside). “Okay, okay…I’ll go back in my room til I have an orgasm.”
You regularly know exactly how healthy your internal organs are. With the cancer, the chemo and all the medications, you’re always getting your blood tested and your body scanned. I’ve never known so much about my kidneys.
People don’t get mad at you when you throw up on that table / floor / bar / sink / road / trashcan / sidewalk. Unless they don’t know you and assume that you’re super drunk. Related upside: prescribed anti-nausea drugs help with chemo nausea AND bad hangovers.
You get to be your own memento mori. Each scar is a reminder that we will all die – but they also remind you that you’re not dead yet. You get to learn how strong you can actually be. You get to learn what friends and family will stick it out with you through tough times. You get to let go of all the trivial things in life that weigh you down because when you are fighting for your life, you discover what really matters to you (like living long enough to see the next season of True Detective).
I know you’re probably thinking, “oh man, cancer sounds so great.” It’s not. It sucks. But the upsides help. Especially the drugs.
(Nostalgia. This is nothing new to you, yeah, I know. But every once in a while, a song comes on that reminds you of times past and you just want to reminisce. Also, I needed a break from writing about cancer. You probably needed a break too).
The Dance Party years. My mid-to-late twenties, living in that small white house on Loren street with my roommate, Caleb, the Martha Stewart of party creation. I threw these parties too, but he’s the one that did all the work to make them perfect. We had this great long living room with old, weathered hardwood floors so that when you push the furniture back and remove the coffee table you’ve got the perfect dance floor. And dance we did. When I look back, I wonder if other people had the same experience as we did. Our parties were full of people you wanted to be around. No d-bags, no super drunk “woo” girls, just friends and friends of friends and sometimes strangers, but they were cool.
We would sip beers on the porch or in the kitchen, chatting and starting to feel the effects of the alcohol. Then a certain song would come on and like a siren’s call, we could not resist. We all moved toward the dance floor and it began. And we would dance all night. All of us. Sweat-soaked and drunk(ish)* jumping up and down, twisting and turning, moving closer to that person you maybe want to make out* with later except that it was okay if you didn’t because we were all there, together, and it was great.
We had theme parties and no one showed up in plain clothes like assholes**. We threw a masquerade party, which I had always wanted to do. We made masks by hand, with plaster or whatever we could come up with, but everyone had a fucking** mask. I bought cheap white fabric and draped the ceiling while Caleb strung up white Christmas lights and paper lanterns. We didn’t take it down for months. Maybe we loved it, maybe we were lazy. The answer is both.
I mean, c’mon. That ceiling, right?!
Caleb and I soaking up the success of our masquerade. That’s Lola in between us. She refused to wear a mask. That bitch.
Caleb planned a black light party where we changed all of our light bulbs with black light bulbs and drew on each other with highlighters. A of course we danced. My future husband was at that party but we never met. Later, I looked at photos from that party and there he was. How did I not notice him back then?
That’s him on the left. So cute, right? Just hanging out on my porch. No idea he was gonna marry some girl inside
Dancing and glowing under the black lights
As true members of our mixed generations of X-ers and millennial’s, we, of course, had an Internet meme party. I went as Pedo-Bear**. There was everything from standing cat, kittens by kittens, a Rick-roller, Sad Keanu to Nic Cage “ your argument is invalid.”
Pedo Bear approves of Standing Cat. Rick Astley Rick Rolling the party.
We had a communist party where we wore red and shared all of our booze. A frat party where we dressed up like preppy frat boys and slutty sorority girls, drank too much and put our Greek letters up on the house, “LOL.” Then there was our Sin City party we threw when Sin City was in the cultural zeitgeist. I was one of the girls from Old town.
This is me pretending to be a sorority girl at the “frat party.” My head is cut off because I’m making a really weird drunk face.
Girls from Old Town with the Yellow Bastard (that paint got everywhere)
Girls from Old Town dancing. That’s me on the left with the purple hair. The Tall One is on the right.
Girls of Old Town being badass. Don’t mess with these girls.
But some of the best dance parties just happened. We’d be at a bar or seeing a band play, bars would close and we’d end up at Sophie’s loft (it’s always someone named Sophie). We’d file up the steep steps already sweaty and in the cups. There’d be a table with huge jugs of cheap vodka and rum. A fridge full of PBRs. No fancy bourbon or gin cocktails like today’s parties. Just the basics. Whatever gets you drunk. But it wasn’t really like that because we were different. We were artists. (Well, they were. But they took me in. They took us all in). We show up dancing. There’s no warming up. We’re ready, soaked with the night, already smelling like beer and cigarettes. Maybe weed***. The loft floor is sticky with sweat and booze. People are hovering over the stereo (ipod/iphone) making sure the music is perfect and it was. And then it would happen. A song like LCD Soundsystem’s, All My Friends would come on and the room would swell as everyone crowded in together because when asked that question, “Where are my friends tonight”? The answer, at this moment in time, was “here.”
*my parents read my blog
**sorry mom and dad
***other people’s weed, mom and dad
More Dance Party Pictures – I warned you this post was a nostalgic indulgence.
We had a steam punk New Year’s Eve party and this girl created these wings that open and close. We go all out.
Dancing broke out at the old Moxie Cinema forums party. A lot of you won’t know what that is. But those that do know…they know.
Sci-Fi New Year’s Eve Party. I was Starbuck from Battlestar Galactica. He was one of the blue handed men from Firefly. I drank a lot of whiskey that night.
It looks like I’m the only one dancing here, but I’m not. Trust me. (Well, I may have been)
I’m guessing this is also the Sci-Fi New’s Years Eve party. We raised money for charity at all of our New Year’s parties. This started with the Tall One.
This is my most ridiculous picture and lead my mom to ask me why I had all these “porno” pics on Facebook. It was my birthday and the theme party idea, stolen from the movie, Rules of Attraction, was “dressed to get screwed.” Everyone did a different take on it. I went classic. I gave myself points for confidence that night.
This was a regular party that turned into a dance party because there was good music and dancing is fun.
The good news is that my meds appear to be working and most of my tumors are shrinking. The bad news is that these same meds make me nauseous. I spend my mornings getting up every 15 – 30 minutes to throw up. The rest of the day is better, but certain foods or smells can set me off at any time. I imagine this is what being pregnant is like. It wouldn’t be so bad if I didn’t already have teeth anxiety. All I can think about is how this must be bad for my teeth enamel. Do I brush my teeth right after to get the acid off? Or should I wait because if I brush my teeth right after, it’ll brush the enamel off? Does anyone know?
My hair finally got thin enough that it was time to shave. I crossed all my fingers and toes and ended up with no weird birthmarks and a pretty nicely shaped head. I was happy with how it turned out. It’s growing in well, except for the path the radiation took. There’s a stretch of my head that looks like I’m trying to pull off a reverse Mohawk. There’s also this perfect circle on the back of my head that grows in darker and faster than anything else because it was blocked from any radiation. It looks bizarre. I’m going to shave the whole thing again and then let it grow back in. Hopefully the radiation-affected areas will grow in better the second time. I’m nervous it won’t grow back and I’ll have weird hair forever. What’s the use in having a nicely shaped head if your hair is weird? Please cross all of your fingers and toes for me.
My eyesight and concentration have improved enough that I’ve started reading again. I burned through Reconstructing Amelia, The Tenth of December, The Brief and Frightening Reign of Phil, and Pastoralia. All but the first book were by George Saunders and excellent. Amelia was a fun, light read, but the writing left a bit to be desired. I’d recommend it as a beach read. I recommend all of the Saunders’ works for any location. Reading makes me feel like I’m accomplishing something during these days where I’m a SAHC (stay at home cancer patient). My other big daily accomplishment: watching the West Wing. I’m already up to season 3. I think it’s a good viewing choice because all the characters are so motivated and work so hard it makes me feel like I’m a part of something important…till the credits roll and I remember I’m sitting on the couch in my pj’s.
After watching the summer pass me by, I feel ready to get back to living. The weather has been remarkably gorgeous – especially for summer in Chicago – and I feel like I haven’t taken advantage of it. I still have yet to ride my bike. It’s time I took the next step from the couch and pj’s to my bike and the out of doors. I’m feeling really motivated and optimistic right now. That’s probably because today is a good day. The problem is that tomorrow I could be throwing up six or seven times again. I just never know. This is the major factor that keeps me from going back to work. On days like today, I feel totally ready. But just yesterday I threw up in my car (in a bag, like a pro). I should mention here that I was driving on Lake Shore Drive when this happened. This may be more dangerous than texting and driving (eh, probably not). I didn’t spill a drop outside the puke bag. Then I pulled into Walgreens, got out and tossed it in the trash like a candy wrapper, and went inside to pick up more anti-nausea drugs (I take three).
Next Tuesday I have gamma knife surgery (this will be my second time). It’s pretty amazing. They kill cancer cells by zapping them with lasers. The worst part of the whole ordeal is that they have to screw a mask onto your skull and it’s swollen and painful for a while after. The surgery itself is a piece of cake. I slept through the last one. Of course, I was on sedatives, so that helped. I’m starting to feel like I’m going to come out of all of this cancer free but addicted to narcotics. GIVE ME MY MORPHINE!!
Hopefully, two days after the surgery I’ll be able to start a new treatment plan called bio chemotherapy. It’s a mixed bag of five different drugs – three chemo drugs and two immunotherapy drugs. It’s intense and I have to be hospitalized while I take it. The worst part about that (besides the inevitable side effects – your standard vomiting, diarrhea, head aches, pain) is the hospital food. It’s as bad as your imagination is telling you it is. Thankfully, it’s not my first time to this rodeo and I know about the secret binder that holds all of the local takeout menus that the nurses use.
There are tumors in my body that aren’t responding to my current treatment. The CT scan confirmed this, but I already knew based on this hockey puck sized tumor on my left side boob. I’m basically pulling a Total Recall tri-boob situation. Except that my third boob is purple, scabby and gross.
Aren’t you glad I included a photo? It’s actually bigger now. I know what you’re thinking, “just surgically remove that sucker.” I wish we could. But it’s too risky on a cancer patient. What we’re hoping is that my new course of treatment will shrink it down to nothingness. My left boob is tired of having to carry the weight of this hanger-on and it’s getting harder and harder to wear a bra.
I should probably take the time to mention that it’s been a year since my diagnosis. I’m thankful for everyday. There have definitely been ups and downs, but still being alive trumps everything. Thank you everyone for your kind thoughts and prayers and support. I’ve been able to make it this far because I’ve got so many wonderful people in my life backing me up. There really is no way to express my gratitude enough. Just know that all of your words, prayers and gifts have not been in vain. They have made a huge difference in my life. Now let’s kick this cancer business once and for all.
I am beginning to suspect that having cancer is a lot like having kids. Right? It totally takes over your life. It’s exhausting. There’s no taking a break. There’s no grabbing your coat and walking out the front door. I mean, you can, but the kids are still there demanding your attention when the police drag you back.
Granted, there are many good things about having kids and there’s really nothing good about having cancer.* I never said it was a perfect metaphor.
My mom friends often worry that they no longer have anything to talk about but their kids – that’s how I feel about the cancer. I don’t have the energy to keep up with things like current events. And when I do, my contribution is basically, “new pope, huh?” NPR is knocking down my door. My days consist of doctor’s appointments and Netflix (and I’m a decade too late to talk to people about the show, Alias). I’m on disability, so I’m not working. Basically, I’m a SAHM with no kids.
I’d like to be one of those people that gets way into researching cancer stuff and becomes some expert on cancer nutrition or dealing with cancer in your 30s, but that sounds so dull to me. Or I’d be like those SAHMs who have these amazing blogs about parenting or home crafts. But, as we’ve already established, I don’t have kids and bless my heart, I’m no good at DIY. I don’t want to research anything. I don’t even want to cook recipes from cancer cookbooks. I want to eat them, but I don’t want to plan, shop or cook. Really it just turns out I’m lazy.
I have no boundaries talking about cancer and my body. It’s all I have to talk about anymore, so I can’t really be picky. I’m gonna be that person that people roll their eyes at because every sentence I write and speak has to do with cancer. I can’t help it. I recognize it, but it’s impossible to change until I get more going on with my life again. Until then, you can also expect more Instagram photos of me in hospital gowns at doctor’s appointments.
I do need somewhere to direct my attention while I’m not working. I have no idea what to do, but I can only nap and watch Netflix so much. On days I feel well, I want to work, but I can’t pop in and pop out of the office. I don’t know how long this cancer fight is going to go on. I can’t make too much money and collect my disability, so even if I was able to do something like freelance write again, it would be minimal. What do I do with myself? Any ideas?
*I did lose 30 pounds and people have given me a lot of cool gifts, so I guess there have been some perks to this whole cancer thing.
I haven’t blogged in a while – mostly because, well, it’s hard. For a long time, my fingers were swollen and very painful, so typing was trying. And, to top it off, my concentration is wonky, so it’s easier to watch old episodes of Buffy the Vampire Slayer than it is to blog.
Everything is hard these days. I can’t even pee without turning on the faucet and talking my bladder into it. My tumors have come back, so I have side effects from the treatment AND pain from tumors. All of this makes me terrible company, so I don’t do that much socially and now I’m lonely. If it sounds like I am complaining – I totally am. Hey – I can only be strong for so long before I fold up into the fetal position. You try having a tumor in your butt muscle that makes it feel like you’ve been doing buns of steel workout videos – but just for one cheek.
The worst thing is if I can’t sleep. So far, that hasn’t been a problem except on a couple occasions where pain kept me up. This makes me very grumpy. I mean, I’m trying my best to sleep through this whole cancer thing.
Things have gotten bad enough that I’m now on Zoloft and I’m going to see someone. Of course, now that I’m on Zoloft, I don’t feel the need as much to see someone, but I’m going to anyways. I know it’ll be good for me. The Zoloft also helps me to keep from crying every time someone asks me how I’m doing. I have very little motivation to do anything outside of exist, which is actually a full-time job these days.
In the MRI that the insurance company is telling me isn’t covered, they found 10 baby tumors. So I now have brain disease and have to get whole brain radiation. In trying not to focus on the whole tumor part, I’m instead obsessing about losing my hair. I’m somewhat okay with it, even though I cried when they told me it would happen and I’ve been growing out my hair for a year. But, I’m secretly hoping it’ll grow in better, like with some curl or something. And I look good with short hair. Fingers crossed I don’t have a weird head. I promise to post pictures.
Although it gets tough at times – like right now, I’m still fighting. It’s weird to fight your body for your life. But I am determined to win – even if it means I have to pay all those darn medical bills.
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