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  1. Listerabellum XIII: Doing All the Things.

    March 3, 2015 by the tall one

    Okay, so first of all, I’m sorry.  The last post I published was on November 22, 2012.  Here is my, admittedly weak, come back post, but I am going to try to actually write entries every once in a while again.

    The Listerabellum is the small but very active section of my brain that does nothing but make [mostly worthless] lists all day. Today’s topic from the Listerabellum: What Has The Tall One Been Doing For Three Years other than Severally Neglecting her Blog to the Point of Literally Forgetting How to Login.

     

    1.  Arts & Letters

    So, the biggest thing I did, probably, was open a business.  But I’ll come back to that.

     

    2.  Raising Funds

    There was a kickass fundraiser that a bunch of wonderful people put together to help out Girl Number Two.  We had rad t-shirts and scarves designed by Mark Leicht, a fantastic album of songs written and recorded for the event by the likes of Someone Still Loves You Boris Yeltsin, Ings, Brother Wiley and so many more great people, most of whom also performed at the event along with Bella Donna and Sister Shakedown.  Album art for this majestic mix was created by H.E. Croan and Max Rosen. The most epic silent auction in the history of fundraisers I have attended organized by Nicole Chilton, Nate Remington, Kara Remington (no relation, they just have the same name) and a slew of other wondrous land mermaids happened and had beautiful and incredible things donated by too many people and businesses to count.  We had a raffle, for which we sold a fuck ton of tickets because the prize was shaving my, at the time, elbow length hair live on stage in front of everyone.  Heather Slater won and got to shave me. Patton Alley Pub let us have the shindig there.  It was a great night with some lovely media coverage from the Newsleader.  On that same great day, Girl Number Two got engaged to Scott Quinn, hilarious hero of our hearts!  So.  It was a big day.

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    Baldies in boots at the fundraiser

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    3.  SRAC Board of Directors

    I became a member of the Springfield Regional Arts Council Board of Directors probably right before my last post on here but I have become increasingly involved in that role.  I am now the chairman (I know, “chairwoman” or “chairperson”, but I don’t like the way those sound for some reason) of the Visual Arts Committee (so yea, like super important boss lady…or something) and am beginning my third year as the Live Art Coordinator for Artsfest on Historic Walnut Street.  I have been a featured speaker in the Speaking of the Arts Series and have gone to Jefferson City to lobby for the arts on Citizens for the Arts Day.  I have hung numerous shows and proposed programming and exhibitions.   I’ve been a guest speaker in classrooms from fifth graders at the Phelps school for the gifted, to MSU required Art Appreciation courses, to Drury’s graduate program in the Summer Institute of Visual Art and presented on a bunch of panels and symposiums about artists and women and women who are artists and creativity in business etc. I’ve had a lot of lovely, enriching experiences!

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    livepaintmroliveartsfest

     

     

    4.  ideaXfactory

    One of the most interesting a fulfilling projects I have been a part of is the space for installation artwork and idea eXploration, ideaXfactory.  I am one of five co-founders of this magical place alongside Pam RuBert, Jonathan Gano, Gerard Nadeau and our Artistic Director Russ RuBert.  We won a $200,000 Artplace America Grant to fund programming and building improvements for our great space at 351 Boonville in downtown Springfield.

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    Installation at ideaXfactory

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    5.  Teaching, or Whatever.

    I have now been teaching in the Art & Design Department at Missouri State University for four years and have enjoyed watching the success of many of my students who are now in graduate programs and teaching.  I guess I’ll keep teaching.  I guess.

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    A needle-felting project by one of my students

     

    6.  THE Wedding Happened!

    Lanie (Girl Number Two) got MARRIED!  And it was beautiful and I cried and it was the best. She was the most gorgeous bride!  I made little veiled headpieces for the bridesmaids and everything was super classy and lovely!

    lanie lanie wedding

     

    7.  Smokey Folk

    I am the manager for a really rad band called Smokey Folk.  If you haven’t heard them yet, check it out.  I have the pleasure of working with them in a variety of ways.  I do all the booking and ordering of merchandise and press releases and media stuff, I organized a Kickstarter to fund their first album (which I produced along with the band) and currently I am learning the songs to be the fill in bass player while our bass player has her second kiddo.  So, all the things.  They’re fantastic people and I am lucky to get to spend so much time with them.

    SmokeyFolky smokeyfolky2 smokeyfolky3smokeyfolky4

     

    8.  Arts & Letters

    Pride and joy, apple of my eye, bane of my existence, hardest I’ve ever worked for the least amount of money, all of these things could be used as descriptors for Arts & Letters.  I love it.  I am the happiest I’ve been with career-wise but owning a small business is tough and tiring.  Luckily, I have the world’s best business partner who also happens to be one of my BFFs 4 Lyfe (still, even a year and four months in and after spending more time together than most spouses).  Arts & Letters is fabulous.  Everything in our gallery/boutique is handmade and most of it is locally produced (all of it is produced by people who used to live in the Ozarks).  We feature incredible exhibitions by talented artists you know and love and some you don’t know you love…yet!  Our top notch selection of clothing and jewelry is a real problem for me.  I am my own best customer.

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    In addition to the boutique and gallery aspects, we’re also gotten to participate in cool community events like the Ozzies, the Imagine concert, several of the Deitra fashion show and issue release parties, JoExpo, Mother’s Day Festival, Fashionation, First Friday Art Walk and a bunch more and we’ve hosting our own events like book and album releases, fashion shows and our monthly series Tapas & Topics.  We have classes in French, Latin and Italian and Illustration and Figure Drawing as well as specialized workshops.

    deitrahugeTapasAndTopics_Logo_1_R2Croan Poster

     

     

     

     

     

     

     

     

    We’ve been lucky enough to receive some really great press too from Deitra, TAG, KOLR10, the Newsleader, Flyover blog, 417 Magazine, Missouri Life Magazine and a lot of great social networking action, we’re the talk of the town!  I won’t post all the things, but here is a smattering.

    deitraspread deitra covernewsleader1417 MRO417   al417

    (As this keeps going I am using increasingly more photos because I am getting tired of writing but am really determined to get this done).

     

    9.  Studio MRO

    Also, I’ve been making some paintings and other weird stuff for shows and stuff and I’m tired so I’ll stop writing now.

    collabshowposter RosewoodPalimpsest Poster

     

    So there’s some of the stuff that has happened since my last blog post.  Kelly (husband) and Buckethead (cat) are still super great and the best and stuff.  More about them soon!  Probably. I will try to be less neglectful of Bs in Bs.

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    Late 2014 when we were both booted blondes once more!

     

     

    Also, I need to update that sandwich list.

     

     


  2. Indulging Nostalgia

    February 25, 2015 by Girl Number 2

    (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?!

    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 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. And danced; 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? How did I not notice him?

    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

    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 “my hair is a bird; your argument is invalid.”

    Pedo Bear approves of Standing Cat. Rick Astley Rick Rolling the party.

    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.

    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 with the Yellow Bastard (that paint got everywhere)

    Girls from Old Town dancing. That's on the left with the purple hair. The Tall One is on the right.

    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.

    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.

    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.

    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.

     

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    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 amy have been)

    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.

    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 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 good music.

    This was a regular party that turned into a dance party because there was good music and dancing is fun.


  3. It’s Like Having Bulimia Without All the Fun Binge Eating

    September 20, 2013 by Girl Number 2

    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.

    photo-5

    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.

    the-west-wing

     

    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).

    ew.

    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!!

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    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.

    photo-7

     

    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.


  4. I’m a SAHM with No Kids

    June 5, 2013 by Girl Number 2

    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.

    Alias

    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.

     


  5. Guys, it’s Getting Tough

    February 26, 2013 by Girl Number 2

    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.

     

     


  6. Listerabellum XII: Sandwiches

    November 22, 2012 by the tall one

    the listerabellum is the small but very active section of my brain that does nothing but make [mostly worthless] lists all day.  today’s topic from the listerabellum: sandwiches.  specifically, my favorite sandwiches in my hometown of springfield, mo.  because nothing follows a moving, but still funny and also very well written, post about the pain and turmoil of living with cancer like a good sandwich list [i hate myself].

    417 magazine has a sandwich category in its “best of springfield” thing every year.  but i just think i am a better judge of food [and everything] than 417.

    1.  the avocado turkey at the dugout. house smoked turkey breast, cheddar, swiss and pepperjack cheeses, lettuce, tomato, onion and avocado [it comes with chipolte mayo, but i leave that off because mayonnaise and all its cousins are gross].  smoked turkey with THREE KINDS OF CHEESE and avocado?!?  it’s the best thing.

    2.  the mushroom grill panini at the aviary cafe and creperie.  sauteed mushrooms, caramelized onions, arugula and herbed cream cheese on locally baked sourdough bread.  i work at this particular restaurant and i eat this at least once a week [who am i kidding, every dayshift i work]. you can add avocado to this one too.  i highly suggest adding avocado to everything any time the option is presented to you.

    3.  the rebecca at the rebecca grille.  chicken salad with lettuce, tomato, red onion, cucumbers, parmesan and house made sweet onion dressing on toasted foccacia bread. i know, i know, chicken salad has mayonnaise in it and i have a little diatribe against mayonnaise above.  this sandwich is so damn good, i can’t even tell there is mayo in it.  the sweet onion dressing hides it.

    4. [my version of] the elizabeth taylor at mama jean’s natural market. fantastic tuna salad [made with veganese which is, i guess, a cousin of mayonnaise but just tastes like olive oil to me], tomato, spinach and provolone, buuuuut i  have them make it on rustic italian bread instead of honey oat [or whatever grainy, less-delicious-looking bread it’s supposed to be on] and i add onions and balsamic reduction.  so good.  my favorite sandwich used to be the tuscan grilled cheese which someone evil* [autumn] decided to remove from the panini menu.  it was fresh buffalo mozzarella, spinach, tomatoes, red onion and balsamic reduction on chibatta and it was the best sandwich ever. if you are at the location on campbell and you buy mozzarella from dave, steve and natalie will still make this for you.

     

    i tried to think of a fifth sandwich that wasn’t a slightly lesser sandwich from one of the restaurants above and i can’t.  those are the four best sandwiches in town.  honorable mention goes to the turkey and provolone on spinach and feta foccacia bread from sisters in thyme on commercial street.  this one is totally customizable so it is hard to officially add to a best of list, but their bread in phenomenal.  they make it in house and make great sweet treats too.  go check them out.

    you may have noticed that all of the sandwiches are on grilled or toasted bread.  that is because i do not like raw toast.  you may also have noticed that none of these sandwiches include red meat.  yea, full disclosure, i don’t eat red meat. so, this list is a rather me-specific list, but really, most of my posts are fairly me-specific.  that is how blogging works.  duh.

     

    she clearly is having the mushroom grill panini at the aviary.

     

    *autumn is actually a lovely person and a friend of mine.  but i decided to take this sandwich removal as a personal insult.  because i’m an adult.

     


  7. My Body is a Cage

    November 16, 2012 by Girl Number 2

    Now that the Arcade Fire song is stuck in your head, you may as well start off watching this awesome video-song mash-up because you were already thinking “man, that song always makes me think of Sergio Leone movies” and this is just way too good:

    Seriously. Watch this. Soooo good. I even just watched it again.

    Since that’s out of the way, I thought it was about time to talk about all the weird things that you have to deal with when your body decides to grow a bunch of tumors. It starts of with, “weird, I’ve got lumps and bruises. One even looks like a third nipple.”

    After two months of growth, things begin to feel a little less superficial and a little more, “welp, my arm is in constant pain and I’m thinking of just having it removed.” Also, my weird third nipple tumor looks more like this purple starfish:

    Gross, right? On my side-boob.

    I take a lot of pain meds, which usually helps everything but my bowels. If you’ve ever had to be on pain pills or had friends who were addicted to them, you know it goes hand in hand with a bottle of laxatives. I’ve traded my nightcap of bourbon for milk of magnesia.

    The other problem with pain pills is that you build up a tolerance for them and have to take more. This means more laxatives. I’m constantly numbing pain and trying to poop.

    I’ve been mostly managing, but last Friday night, I hit that point where the pain in my arm was too much (my self-diagnosis is that one of the tumors is pressing on a nerve sending constant pain down my arm and numbing my fingers…my fingers have been numb for weeks). I would fall asleep for maybe 30 minutes to an hour before I would shift in my sleep and wake to what felt like that scene in 127 Hours where he has to cut through the nerve (spoiler alert. Also…I’m aware that his thing was worse).

    There's a GIF for the nerve scene - but I don't want anyone fainting and hurting themselves. So, we'll go with this one instead for funsies.

    My days are now completely determined by my body. My decisions made by the minute. Do I leave the apartment today? How much can I push myself before I’m in the restaurant bathroom throwing up? Can I make it down the stairs to check the mail? Is my vision too strained to watch a subtitled movie on Netflix? (Unfortunately…yes. So annoying. Also – feel free to leave good Netflix or Hulu+ movie / show recommendations in the comments. I’m almost finished watching the whole internet).

    People try to make plans with me but everything is always up in the air til the last minute. I never know how I’m going to feel. I need my own version of the bat signal to light up when I’m feeling like a normal person.

    I haven’t worked in over a month. I keep fanaticizing about going back (this is how you know you like your job). The days I feel good and do normal things are incredible. They usually end with me exhausted, but totally worth it. I really want to add “going to the office” to my normal things. Or even working from home. You guys, my job is awesome. I miss it.

    Last Tuesday night I started treatment. I’m taking a drug called Zelboraf. I stalked UPS to get it because those babies cost more than $10,500 and I am not letting them slip through my fingers. I should probably note here that thanks to insurance and assistance from the drug company, my portion of the ten grand is only $20. You have no idea what a relief that is. Sure, it’ll sky rocket when I have to meet my deductible again, but not all the way up to ten grand. I’m hoping no one in the neighborhood catches on that my packages have that much street worth.

    I’m hoping I respond to these drugs like a rock star and manage to escape a lot of the side effects. But if I don’t, here’s what I get to look forward to (I’ll leave out the major ones that are more rare – like organ problems, heart problems, other kinds of skin cancer and whatnot. You know, the “stop taking this drug immediately” stuff. That stuff is terrifying). I’ll stick to the “most common side effects of Zelboraf” list:

    • Joint pain
    • Rash
    • Hair loss
    • Tiredness
    • Sunburn or sun sensitivity
    • Nausea
    • Itching
    • Warts

     

    Basically, I’m going to be so sexy.

    In case you were wondering, here are the things I’m dealing with now, just from the tumors:

    • Tiredness
    • Achiness
    • Severe left arm pain
    • Foggy headedness
    • Blurred vision
    • Nausea / throwing up
    • Abdominal discomfort
    • Charlie horses / toes spasms
    • Dry mouth
    • Everything tastes bad or off (this is sooooo annoying)

     

    So, really…trading some of these symptoms for side effects won’t be too bad. Although, since I’ve started treatment, my vision has gotten a little worse, I have major foggy-headedness and I knelt down to pick something up and realized my joints ain’t so strong anymore. Getting up was hard! It reminds me of the time I fell skiing when I’d just had a knee injury – making it hard to get up (that and being out of shape). And a guy stood and watched me struggle but never once lent a hand. Just looked at me like I was a dork (I was). Thankfully, my mom was with me at the store and helped me up since she’s not a jerk that thinks he’s so cool because he sits in his little booth running the ski lift all day. What are you doing with your life now, ski jerk!?!

    The thing I worry about most (besides the big stuff….like dying or finding tumors in my next brain scan or going too long without pooping) is that I’ll have a reaction where I won’t be able to take these meds. I have other options, but I really want to build on what I’ve already started. Everyday I wake up and evaluate everything my body does. Is my heart rate high? Is this heavy breathing from the fluid on my lung or does it feel different? Is my skin itchy because the weather changed or is it the meds? Am I dizzy or just clumsy? Did I poop today?

     

     

     


  8. Cue Dramatic Music

    October 22, 2012 by Girl Number 2

    Thankfully, I have had years of movie watching to prepare me for dealing with having a serious illness. If I had not just watched 50/50 this year, how would I have known to have the “if this is too much for you and need to bail, that’s okay” talk with my boyfriend? Scott and I only started dating “officially” in, well, January. We were friends for years before dating, but that’s still a pretty young relationship to jump into cancerland. We don’t even fart in front of each other yet (not that I ever plan to).

    How do you make it okay for someone to leave if they need to? Especially when you just moved in together? I wouldn’t want him to leave – I love him. But also – because I love him – I don’t want him to feel obligated to give up time and happiness to walk down such an unknown path with me. I wouldn’t want him to stay because it’s easier and less assholey than if he left. Thankfully, Scott isn’t like the awful girlfriend in the movie who stays out of obligation and ends up cheating on and abandoning Joseph Gordon Levitt (spoiler alert!). He’s all in. The music swelled, he kissed me and assured me that there was nowhere he wanted to be but with me. There wasn’t a dry eye in the house.

    Also, I flashed him some side-boob.* It never hurts to stack the odds.

    (*this blog is rated PG…while my mom and dad are reading).

     

    I don’t think the reality of having cancer has quite hit me yet – mostly because I’m not sitting on an Adirondack chair on a new England beach wearing a straw hat, Jackie-o sunglasses and linen pants as my loved ones and their children play happily around me and I have a serene yet somewhat sad expression on my face observing so much life and hope while facing the idea of my own mortality. Someone will come over to me – my mom, maybe — and ask if I’m tired and want to go in. But I’ll smile softly and say, “not yet. I just want to sit here a little longer.”

    Am I the wind beneath *your* wings? eh? EH? Anyone???

    I’m also gearing up for the “I’m fucking mad that this is happening to me. Why me?!” dramatic scene that gets real but ends with a funny line from the friend I’m breaking down in front of like, “oh grow up, so you have cancer – I haven’t had an orgasm in five years” because topics like orgasms are shocking and funny in those scenes. “What?!” I say, laughing and crying at the same time, “is that true? Why didn’t you tell me things were so bad? I would have ordered you a vibrator from Amazon. You know that’s the top-selling item they have!” “I don’t know. You were going through so much. I didn’t want to burden you with my problems,” she’d say. Except that none of my friends would go five years without an orgasm, so I don’t know who the hell this lady is.

    I do know one thing for sure, though, that if things take a shocking turn for the worst and my days become numbered, I want my end to be like the series finale of Dawson’s Creek where Jen lies dying of a heart condition and everyone comes to say their goodbyes (Spoiler alert..from the NINETIES). I don’t have a daughter, so Lola (my yorkie-poo) will have to fit that role. I’ll film a video for her and pick the perfect person to take care of her when I’m gone. Sarah Mclachlan will be playing in the background (I don’t remember if this is the case in the show, but it seems appropriate. Plus, people will cry more because of all of those sad dog rescue commercials). I’ll be near the beach, of course, because that’s always where these things happen. And my friends will come in and we’ll make jokes about death and get teary-eyed and opt to be strong and graceful. Also – I really want my hair to look like Michelle Williams’ in that episode.

    Michelle Williams – best thing to come out of Dawson’s Creek.

    I also really want Dawson by my side doing this:

    Don’t worry, guys, I’m not really thinking about “the end”. Well, except when my mom talks about being encouraged by all of these stories where people in my condition are given six months to live – but they’re still alive eight years later. “It’s good because we won’t be thrown by a bombshell like that if we get that kind of news!” she says. Which is true. Except that it never actually occurred to me until then that dying was even on the table….so…er…okay.

    Much to my surprise (after all my hard living from ages 27-31), it turns out I’m really healthy except for the cancer. All the experts seem to agree that this sets me up really well for fighting off this shit. That’s a positive note to end on, right?

    s’all good, guys.


  9. Listerabellum XI: Restaurant Etiquette

    October 20, 2012 by the tall one

    the listerabellum is the small but very active section of my brain that does nothing but make [mostly worthless] lists all day.  today’s topic from the listerabellum: restaurant etiquette for patrons, or, how to tell if you are a complete fuckwit when it comes to dining in public.

    1.  do you interrupt your server while he or she is either answering your question or just generally giving you useful information?*

    2.  do you absolutely avoid making eye contact?

    3.  do you correct your server condescendingly when you are actually wrong and your server is right (it is his/her job, ya know)?**

    4.  do you pull your silverware out of your napkin without unrolling it to avoid using the napkin?

    5.  do you leave:  gum, used kleenexes, outside trash (wrapping paper etc) on the table?

    6.  do you stare awkwardly without assisting when your server is trying to set down your plate but your glass/phone/silverware/commemorative civil war lantern etc is in the way?***

    7.  do you snap your fingers/wave your arms/stand up and “holler” at your server?

    8.  do you stare blankly when your server asks if you need anything else after delivering your food only to flag him/her down thirty seconds later to DEMAND ketchup/more ice/less “crunchy” salt/a bowl full of lemons while rolling your eyes and acting inconvenienced and exasperated?

    9.  do you painfully explain your two-hundred year family history to your sever before telling him or her your drink order when the restaurant is totally full with a 45 minute wait period?

    10.  do you show up right when the (small, locally owned, not-chain) restaurant opens at 8 in the morning and then pay for your coffee with a hundred dollar bill?****

    11.  do you order something that has an ingredient you are not familiar with (listed on the menu), not ask what it is and then get mad when it turns out to be something you don’t want?

    12.  do you ignore the menu/chef’s suggestions on a temperature or preparation and then get upset when you don’t like it the way you special ordered it?

    13.  do you tip less than 20% when you’ve received good service?

    if you answered in the affirmative to any of these questions, congratulations, you are a fuckwit and your server cringes every time you walk in the door.

    "i hate all these fucking fuckwits."

    *”our soup of the day is a soy mushroom with spin—” “what is your soup of the day?”

    **”we only like sweet reds, so we’ll have a bottle of the chilean cabernet.”  “actually, sir, that is a dry wine, but it is excell-” *scoff noise* “i think i know more about wine than you.  we’ll have the *sweet* cab.”  that doesn’t exist, ass.

    ***that plate your server is holding, all non-nonchalantly, weighs six pounds with nothing on it and is molten hot, by the way.

    ****in small non-chain restaurants, the servers generally have to carry their own bank.  they carry a max of about $50.  in the mornings, there may not be a manager there, so there is probably no possible way for them to break your $100 without going to an atm and wiping out their bank for the entire shift.

     


  10. listerabellum x: how to be a good friend, or actually, a less bad person in general.

    October 14, 2012 by the tall one

    the listerabellum is the small but very active section of my brain that does nothing but make [mostly worthless] lists all day.  today’s topic from the listerabellum: how to be a good friend less bad person in general.

    1.  communicate with the people that matter to you even when something terrible isn’t happening in their lives.  i love girl #2.  like, for realz, love her.  since she moved to chicago, i have done an amazingly awful job of communicating with her outside of the douchiest forms of communication (i.e. “hearting” her posts on instagram, and the like).  and this isn’t just limited to my lack of meaningful communication with my blogmate (and one of my favorite people), this is true of myself (and most of the people i know) in general.  my co-best friend (girl kelly, who has probably been mentioned on here before a time or two) and i have crafted and sent postcards back and forth to each other for many, many years.  in the last year, i have completely stopped this less-of-a-bad-person approved practice until recently when i realized what a jerk i was being.  gk has kept it up despite my lack of response because she is, on the whole, just a glorious example of how to be a good friend.  i only speak to/see some members of my family when someone dies or gets married or i need an address to send (celebratory or sympathetic) flowers to.  that is bad.  the bottom line is, it shouldn’t take getting cancer to get you to send someone an actual letter through the mail or pick up a phone or get on a plane.  show people you care without clicking a fucking mouse.

    2.  cook food for and with friends.  getting together for a beer (or seven beers, in my friend group) is fine, but some of my very favorite get-togethers involve food.  planning a meal, going to the store, procuring supplies and cooking and eating food with a group of people you care about is great.  do it regularly.  weekly.  twice a week with two different sets of friends, whatever, but do it more often than you do now.

    3.  send real mail.  yes, yes, i talked about this in number one, but really, send actual mail.  with stamps and writing without anything that plugs in or has internet capability.  buy stamps.  make weird little collages and drawings and turn them into postcards.  buy trinkets and packing tape.  design stationary.  pick a signature “you” thing to do, but do it.  real mail is the best. USPS for the win.

    4.  call people even when you aren’t lost.  i don’t even know if this needs explaining.  i feel like the vast majority of non-business. non-doctor, non-mediacom related phone calls are directionally motivated and even those are diminishing due to fancy phones and siri.  call people occasionally just to talk to them with your mouth and listen with your ears.  i bet there is someone you love whose voice you can’t quite remember anymore.  doesn’t that make you hate yourself a little?  take preventative measures!

    5.  give presents.  they don’t have to be big or expensive.  hell, you don’t even have to buy them, you can make presents.  but give little nonsense, thoughtful gifts every once in a while.  actual things are best as opposed to giftcards (which are just disguises for money… what are you saying?  that your loved ones are WHORES?!)  and wrap those little gifts.  remember:  every time you buy a giftcard and “wrap” it in a bag, a kitten dies a horrible death.

    6. acknowledge birthdays outside of social networking.

    7.  support your friends.  your friend is deeply involved in a charity group? google it.  learn about the organization, if it sounds like something you also care about, support that cause!  if it isn’t your bag, at least now you know more about what your friend is up to.  your other friend is working on a project?  pledge to his or her kickstarter or volunteer to help with it.  your brother is making a movie?  let him smash your front living room window, rearrange your house and take your storm door off its hinges (it is still off its hinges, btw, max), see if he needs you to obtain and dye a dead cat that he won’t use in the actual film.  or some less specific example.  know what sort of things the people you care about care about and help them out if you can.

    8.  tell people what they need to hear not what they want to hear.  if someone is doing something stupid (like an aspiring male model… get it?  “doing”… no?  ok) let them know.  whether it is a possibly abusive relationship, a really bad haircut, an addiction issue or bad business venture (“investing my 401k in pagers, yo, because they’re coming back”), tell your friends when they are making mistakes.  they may not listen to you, and occasionally you may be wrong, but at least you’re being honest and giving real advice.

    9.  avoid borrowing money, but if you must, pay it back, asap.

    10. listen.  stop talking.  stop waiting for them to stop talking so you can talk.  listen!

    11.  say nice things.  this is not the opposite of number 8.  do not say fake nice things, say real nice things.  if your friend looks really pretty in her new dress, tell her (or him, we don’t judge here).  compliment people on their skills, attributes, new haircuts, talents and accomplishments.  it’ll make them feel good, even if you think they should be damn well aware of how accomplished and awesome they are*.

    12.  when your dear friend asks you to write a blog post immediately following her witty, engaging, dramatic, well-written, three-piece revelation about her recent cancer diagnosis, you write that fucking blog even though you worked until one in the morning and don’t feel very witty or engaging and…and stuff.  because, you want to be a less bad person! yea! don’t let the terrorists win!

     

     

    snuggles and hugs are also good for being a better human.

     

    *i have a ridiculously large number of insanely talented and accomplished friends, but dz has his accomplishments so nicely documented and easy to google for reference purposes, he wins the in-paragraph example link.  (he doesn’t read this anyway, so it’s ok, it won’t go to his head).