• Day Six Hundred and Ninety-Six

    Since May 22, 2023 until today, my medical expenses amount to:

    $1,147,452.74

    That’s not including the annual fees my parents have covered out-of-pocket so I can see the family doctor at his concierge practice. It doesn’t include the fees to obtain my medical cannabis card, or the cannabis itself. It doesn’t include the products I’ve purchased over-the-counter, like ice packs, acetaminophen, Aquaphor, saline, magnesium glycinate, glucosamine chondroitin with MSM, Colace and Miralax . . . and Imodium!

    One million one hundred and forty-seven thousand four hundred and fifty-two dollars and seventy-four cents.

  • Day Five Hundred and Forty-Five

    I had my twenty-fifth infusion treatment at MSK today. It has not gotten easier, but I have gotten used to it.I’ve gotten used to the route there and back—Route 35 to 684 has got to be one of the most monotonous byways in the region just north of New York City.

    I’ve gotten used to never knowing exactly what to expect (e.g. how long will we wait? Who’ll be my infusion nurse? Will I feel hungry or snackish or have no appetite at all? Will they surprise me at the very last moment with an extra blood sample or a urine sample kit . . . or worse, the other kind of kit?)

    I’ve gotten used to politely declining the offer of a warm blanket before I’ve even taken my seat in “The Chair.” Those treatment rooms are hotter and stuffier than the back seat of a school bus that’s been waiting in the sun for thirty minutes for school to let out.

    I’ve gotten used to not being able to do much during an infusion. I expected to pass the time playing Banagrams or Jotto, writing postcards, or even painting my nails (the infusion rooms are singles occupancy.) The tray table is too small for games. One hand is strung up by my IV, and that’s if it’s not on ice. And the heavy dose of Benadryl I get before they push the real stuff makes me a pretty sloppy competitor, writer, and painter.

    I’ve even gotten used to the fact that no matter what exciting news you get—Your CA-125 is down! Your WBC is up! You look so much healthier than the last time I saw you!—the news is still kinda lousy because it’s about the cancer that you still have.

    I haven’t gotten used to people who’ve miscalculated their two-inch voices or use the clicky keyboard on their mobile device or receive 242 notifications within the span of an hour or play mobile games with boingy-boingy or—this is truly unbelievable—shooter sound effects.

  • Day One Hundred and Three

    I’ve been craving sushi since I was in the hospital and starting to get my appetite back (circa Day Eight.) I thought that would be the first take-out dish I’d eat once I got home. It turned out that I was too tired, in too much pain, and feeling too sick in the first few weeks after surgery.

    Then I started chemo, which makes me more susceptible to bacteria. I’m not supposed to eat uncooked fruits and veggies during chemotherapy, so raw fish doesn’t seem like a very wise take-out order, either.

    Tonight, we’re ordering Thai food, and I’m so excited.

    What’s strange is that I’m not an adventurous eater at all. I don’t like surprises! Seafood, let alone raw seafood, isn’t my typical fare. Anything served with legs or eyes makes me nervous. Spicy dishes are risky, as well.

    I like what you’d expect a Very White Person to like: California rolls, Alaska rolls, chicken pad thai, spring rolls, fortune cookies. (I do love fortune cookies.)

  • Day One

    I have cancer.

  • Dear Dixie

    1468800_843481833585_1243191480_nOne year since you, Dix. Dixie Chick of Shadowland White. Dixalicious. Chunk with the Junk in Her Trunk. My Snuggleupagus.

    I still miss you every every every day, especially when I’m walking home after work. I used to get home and launch into a frustrated rant about work or slow walkers or silent filibusters. You’d sit at my feet, shifting back and forth, if necessary, as I paced, twitching the very tip of your tail hopefully, like you always did. When you got impatient, you’d put your paw up on my knee, like, “excuse me, down here, hi, hi, hello!” I’d finally get the message, and I’d kneel down to greet you and instantly forget all my troubles.

    When I scratched your ears, rubbed your belly, or snuggled your scruff, your comfort and happiness comforted me and made me happy. I believe you knew that, and that you felt the same way.

    I loved knowing—usually—what you needed from me, and that I could provide it. And you could always give back what I needed most from you. Could you read my mind and know what I was feeling? I’m not entirely sure about that. I think it just worked out that what was best for you was best for me; that’s enough for me to know that our bond was special—honest, generous, affectionate, and loyal.IMG_4797

    I’ve faced some tough times in the last year. When I’m sad, sick, or tired, I miss you terribly. When I can’t sleep or concentrate, I remember your thunderous snoring and the insistent, reassuring press of your forehead, chin, or rump against me. When I feel weak or hopeless, I remember your steady gait and your patient gaze. But I also miss you when I’m happiest, because feeling safe, peaceful, or loved always reminds me of you.

    A few fantastic things have come my way this year, too—four of them are other Shadowland labs, including your granddaughter, Birdie Balderdash!

    Ida Run-A-Muck & Birdie “The Bird” Balderdash of Shadowland, November 2015

    Your wonderful pawrents Karen and Craig have sent Birdie, along with young ladies named Ida, Sally, and Shirley, to visit me, and Mom and Dad, for sleepover weekends when we’ve needed some labrador love in the house.

    12742131_10100210970829665_4083055946047667566_nSisters (yes, littermates!) Sally and Shirley of Shadowland, February 2016

    Shadowland is in very good paws with those girls! We feel so lucky to be part of the extended Shadowland family, thanks to you. Karen and Craig adored you; I’m so grateful that they shared you with me.

    Right after you died, I worried a lot about where you might be and if you were okay there. It tore up my heart to think about you being somewhere unfamiliar, not sure what to do, lonely, waiting for me, and wondering why I didn’t come. On bad days, I felt so guilty, angry, helpless, and sad that I looked forward to the “good” days when just the sadness, on its own, felt tolerable. A year later, I think I’ve finally come to believe that wherever you are, you’re safe and content, and comfortable enough to roll belly-up when you’re dreaming. Now, I’m just hoping I get to be with you again someday, there, wherever there is. I know you’ll wait for me.

    IMG_5083

    It’s been a very warm March week, the kind of days you would have liked to spending lying on the deck, baking in the sun. Even before it registered that this anniversary was approaching so quickly, I’d found myself thinking about how much you loved to do that and wishing you were here to enjoy this weather. Making you happy was not only a delight, but a point of pride! I hadn’t grasped that facet of love so thoroughly until I loved you; you probably understood it all along.

    IMG_4728

    So, wherever you are, know that I’m thinking about you, which is kind of like petting you with my mind. Thank you for being my best friend. I promise that I’m okay and I’m ready to love another dog full-time, just as soon as I’m allowed to bring one home! I’m so proud of you for overcoming your fear of cutlery and for becoming the Dog of the House after Maggie was gone. You did a great job looking after Mom and Dad. Please say ‘hi’ to Maggie for me. You’re a good, good girl. I love you, Dix.

    Always,

    Your Girl, Emily

  • 2011 Faves: Music

    My eleven favorite 2011 releases

    Turning Tables, Adele
    Next time I’ll be braver / I’ll be my own savior / When the thunder calls for me

    Helplessness Blues, Fleet Foxes
    Yeah, I’m tongue-tied and dizzy and I can’t keep it to myself  / What good is it to sing helplessness blues; why should I wait for anyone else?

    Don’t Turn Out the Lights (D.T.O.T.L.), NKOTBSB
    I still got this fire for you, we can get it back again / If you don’t say that it’s the end (the end)


    Shake it Out, Florence and the Machine
    And I am done with my graceless heart / So tonight I’m gonna cut it out and then restart

    Sorry 4 the Wait, Lil Wayne
    Hello, goodbye, where are you Wayne? / I’m somewhere in between joy and pain

    ‘Til the World Ends, Britney Spears
    If you feel it, let it happen / Keep on dancing ’til the world ends

    Modern Love, Matt Nathanson
    So we stumble, we disconnect / Over and over again


    Otis, Kanye West and Jay-Z, featuring Otis Redding
    They say I’m crazy, but I’m about to go dumb again / They ain’t seen me cause I pulled up in my other Benz / Last week I was in my other other Benz

    Highway Unicorn (Road to Love), Lady Gaga
    And she’s got rainbow syrup in her heart that she bleeds

    Shock to My System, Gemma Hayes
    I felt safe walking straight lines / You were a shock to my system / Lighting up a fire so bright

    Make a New Dance Up, Hey Ocean
    You make me wanna dance / You make me wanna move / You make me wanna

    My eleven most-played in 2011

    The Shape I Found You In, Girlyman (2003)
    But my heart tried to cheat / Building safety nets under my feet / So if I fell I would fall right in / That’s the shape you found me in

    Changes, Tupac (1998)
    I got love for my brother, but we can never go nowhere / Unless we share with each other / We gotta start makin’ changes / Learn to see me as a brother ‘stead of two distant strangers.

    Touches You, MIKA (2009)
    When you’ve had enough and you need somebody to know / Well, you’re looking tough, but you need a way to let it go

    Come Out of the Shade, The Perishers (2007)
    Take a step and come out here in the sun / I can tell it’s already begun / I’m helpless without you, helpless without you / Helpless without your warming smile


    Digital Love, Daft Punk (2001)
    Don’t stop come a little closer / As we jam the rhythm gets stronger / There’s nothing wrong with just a little little fun

    In A Big Country, Big Country (1983)
    I’m not expecting to grow flowers in the desert / But I can live and breathe and see the sun in wintertime

    Sour Cherry, The Kills (2008)
    I’m a penny in a diamond mine / We could be movers / We could be shakers / If we could just shake somethin’ out of the blue / And get off the ride

    I Tried to Rock You But You Only Can Roll, Leona Naess (2001)
    I’ve got a smile that’ll knock you down / I’ve got friends who will follow me / And I don’t own responsibility / And I know what I am / And I know that I’m right / Yeah, yeah, yeah

    Hell Yeah, Ani DiFranco (1994)
    But in the ‘he said, she said’ / Sometimes there’s some poetry / If you turn your back long enough / And let it happen naturally / Oh, yeah / Hell, yeah

    Well-Alright, Spoon (2009)
    Don’t mean nothing, just some common sense / Not so much is just the fact we met / Everything’s well-alright / Gonna be well-alright


    Young Blood, The Naked and Famous (2010)
    The bitter sweet between my teeth / Trying to find the in-betweens / Fall back in love eventually

  • Little Miss Transient

    On Friday morning, I put on my sunglasses, some old flip flops, and a bra and walked down the block for a coffee and a stack of amNYs left over after the morning commute.

    I wonder what patrons finishing their breakfasts outside the diner thought when I pulled ten copies of the free tabloid daily out of the box on the corner. “Look at that hobo. Is she going to make a bed out of those newspapers? She’s hurtin’ for a new pair of shoes. Oh, but she’s had a pedicure! And a manicure! And is she drinking a large non-fat iced latte with a shot of cinnamon?”

    She was, indeed.

    I deserved that latte, too; I had to spend the rest of the day lining boxes with those newspapers and wrapping my more fragile belongings in them.  Packing is hard.  I chipped a nail!

  • 2009 Faves: Songs

    My nine favorite 2009 releases:

    Photo credit NYTimes.com

    Just Dance by Lady Gaga
    I love this record, baby, but I can’t see straight anymore.

    Dance Anthem of the 80s by Regina Spektor
    They want to be touched, to touch each other, / They want to sleep, they want to be slept, / They want to watch, to watch each other . . .

    Knocks You Down by Keri Hilson, Kanye West & Ne-Yo
    Every mornin’ I look at you and smile, / ‘Cause boy you came around and you knocked me down, / Knocked me down.

    Young and Restless by Pains of Being Pure at Heart
    Between the stacks in the library / Not like anyone stopped to see / We came they went our bodies spent / Among the dust and the microfiche.

    Don’t Upset the Rhythm by Noisettes
    So let me show you / Something super beautiful.

    Under the Milky Way by Sia
    And it’s something quite peculiar, / Something shimmering and white, / Leads you here despite your destination

    This Tornado Loves You by Neko Case
    Your rails have always outrun mine, / So I pick them up and crash them down / In a moment close to now.

    Evacuate the Dancefloor by Cascada
    I’m infected by the sound.

    Kings and Queens by 30 Seconds to Mars
    We stole our new lives, / Through blood and pain, / In defense of our dreams.

    My nine most-played of the year:

    Black or White by Michael Jackson
    Now I believe in miracles, / And a miracle has happened tonight.

    Desire by Ryan Adams
    This time I’m speeding with no direction. / Without a reason. What is this fire? / Burning slowly. My one and only.

    I’m Burning for You by Blue Oyster Cult
    Burn out the day, / Burn out the night, / I can’t see no reason to put up a fight. / I’m living for giving the devil his due

    Any Day Now by Missy Higgins
    Say you’ve kept some fire away / To set light to me some surprising day.

    Battlefield by Jordin Sparks
    I guess you better go and get your armor.

    I’m Yours by Jason Mraz
    Listen to the music of the moment, maybe sing with me / A la peaceful melodies / It’s your God-forsaken right to be love, love, loved.

    Gardener by Rebecca Riots
    I have got to be more conscious / Of the things I do and don’t do . . . / It’s about perceiving what’s happening / In this very moment / And deliberately choosing to extend love.

    Friends and Family by Trik Turner
    ‘Cause alls I need / Is the air that I breathe / And my friends and family / To believe in me.

    Divorce Song by Liz Phair
    I would have stayed in your bed / For the rest of my life / Just to prove I was right.

  • What I’m wearing to . . .

    I’m going to a wedding in October, the first in my adult life for which I’ll have full creative control over my wardrobe.  So, even though everyone will be looking at the bride, as well they should, I’m putting a lot of thought into my ensemble.  This is what I’ve come up with.

    wearing_octoberwedding

    I bought this dress on the whimsiest of whims last winter. I found it on the wrong rack—a petite size far from the petite section—and it was marked down so far that I knew it was the last one of its kind.  But, it was a size up from what I normally wear and the petite size conversion rule turned out to be true!  At the three-way mirror in the fitting room, I had to use a clothes hanger to fend off a few admirers who would have stripped the garment from my body for themselves.  I escaped with the dress and I’m so excited to finally wear it!  Maggy London’s Fall 2009 collection is online here.

    Can a girl go wrong with Tiffany?  Of course not.  I don’t think the silver beads get enough play.  They’re darling; the fine metal equivalent of pearls.  The bracelet was a gift in high school; the earrings were a little gift to myself after I got my second job.

    I detest heels.  Really.  Partly on principle, but mostly because they hurt me.  But my Maid of Honor dress at Jill’s wedding in July was tea length, and I couldn’t get away with silver Birkenstocks in the church anyway, so I picked out this pair of sandals from Naturalizer’s N5 Comfort Elements collection.  These heels are amaaaaazing.  I made it down the aisle and back and through a night of dancing with the under-10 crowd at the wedding in these shoes, and in the morning, when I went back to the hotel to pick up Jill’s dress, I put them back on, just for kicks.  I think it was clear, when I walked into the hotel dining room that morning in a commemorative t-shirt from the 1984 Olympic games, madras shorts and silver heels, that my principles were out the window.

    Thank you, Grandmom, for outfitting me with such an extensive dress-up collection when I was a little girl.  Thank you, too, for including items that could translate from pink plastic dress-up suitcase to special occasions in my adult life!  I’ve always loved the snap that this faux leather clutch makes when it’s snapped shut.  I’ll have to resist opening and closing it throughout the wedding ceremony.

    I found this lovely violet silk flower among many effortlessly enchanting floral accessories in an Etsy shop called East End Home Arts.  I browsed the heck out of Etsy on a quest for silk flowers, and the selection in Suzy’s shop is unique, feminine, and affordable.  Her customer service is fantastic, too.  I my first order with her (for one of these peach cosmos) on the night before she gave birth to her first baby, and the new mom still managed to deliver within a week.  She told me that custom orders are her favorites to work on, so if you’re in the “flowers in your hair” mood, get in touch with her.  And if you’re not in the “flowers in your hair” mood, please take a good hard look at yourself and get back to me when you’ve sorted yourself out.

    I’m ready to get dressed for this wedding now.  Where is my pink plastic dress-up suitcase?

  • How to Clean Your Stainless Steel Flask

    . . . That You Really Love Because You Got it in New Zealand

    1. Text your friend, Lil’ Jay, with whom you have been discussing flasks: My flask smells revolting. How do you clean a flask?

    2. Wait for her reply: [My fiance] says, “What do you mean ‘how do you clean a flask?’ You Google ‘how to clean a flask!”

    3. Wait for the addendum: He Googled it for you.  Salt water or a little bleach in water.

    4. Leave putrid flask out on the kitchen counter for one week, or until your roommate asks if there is any particular reason that your putrid flask is out on the kitchen counter.

    5. Poke around in the cabinets, trying to remember what Lil’ Jay’s fiance’s Google search results suggested, until you find some white vinegar and baking soda and think, “Oh, yeah, that might have been it.”

    7. Dribble some vinegar and a little bit of warm water into the flask.

    8. Use the heart-shaped teaspoon your grandmother gave you for Valentine’s Day to scoop 1 tsp. baking soda into the flask.

    9. Screw the cap closed and shake vigorously.

    10. Listen to the fizzing.

    11. Shake vigorouslier.

    12. Listen to more fizzing.

    13. Empty the flask. Rinse thoroughly with warm water.

    14. Check old text messages and see that Lil’ Jay’s fiance actually suggested salt water and bleach, not vinegar or baking soda.

    15. Google it yourself and find these great instructions for cleaning a stainless steel travel coffee mug (almost the same thing, yes?) with baking soda, boiling water, and white or cider vinegar on Good Housekeeping‘s website.

    I bet Lil’ Jay’s fiance hasn’t even heard of Heloise and her hints, hmpfh!

    flaskpjpocket

    16. Take a picture to show how well your sparkling and squeaky clean flask fits in the pocket of your pajama pants!

    17. Feel silly.

    18. Post it on the internet anyway.