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  Adventures of a Girl with Hodgkins

The Plastic Margarita Glass is Half Full

11/30/2010

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Today marked treatment number six of twelve.  Woo Hoo!!!  After two weeks of congestion and coughing and general malaise, I literally started feeling better yesterday...just in time for chemo.  Which is great because chemo sucks enough already. Having a sinus headache and hacking up a lung at the same time, sounds like my version of hell.  I was actually worried about my white cell counts after all of that nonsense, but Dr. Fishman says they’re actually holding up really well. In all the excitement, I forgot to get a copy of my blood work, so I don’t know the official number, but I do know it was good enough that I only need two Neupogen shots this week, instead of the three I had been getting.  Sweet.

While I don’t quite feel like I’m “almost there”, half way is definitely something to celebrate, and nothing says party like some drinks with umbrellas and plastic flamingos.  We even busted open a bottle of the bubbly, although since I’m off the hooch until treatment ends, we had to settle for sparkling apple cider.  Probably for the best as I’m pretty sure Dr. Fishman (and my fellow patients for that matter) would not have appreciated me getting the staff drunk.  Tipsy nurses + needles = bad news bears.

Charlie was there; Annie snuck out of work and came over to help mark the occasion, and my favorite chemo nurse Dionne even got down with the festivities. I’m sure if my mom were around, she would have been there, too.  In many ways she was the inspiration for the party.   She always told us ‘you’re either laughing or you’re crying, so you might as well be laughing’  (usually after one of us – and usually her – accidentally found some ingenious new way to make a spectacle of ourselves.)  My mom had this way of making the ordinary special and turning adversity into an adventure. 

Case in point:  the infamous PB&J sandwiches story.  My mom was in the middle of final exams and studying like a fiend, only to be broken from her deep concentration by a 5 and 6 year-old Annie and I wanting some dinner.  We were on welfare while mom put herself back through school, so we were not necessarily eating high on the hog on a good day, but we must have been close to the end of our food stamp run, because when she looked the through the cabinets to see what she could throw together, she found…nothing.  We had Kraft mac and cheese but no milk or butter; ketchup but no frozen hotdogs to boil; no rogue, dented can of soup at the back of the cupboard to open.  There was not even one of those lousy, frozen Swenson turkey pot pies that were usually on sale 15 for a dollar that I had come to loathe almost as much as Spam.  (That’s another post altogether.) 

She did find peanut butter and jelly – promising – but sadly, no bread.  There was, however, half a sleeve of saltines in the cupboard.  She used the crackers to make little peanut butter and jelly sandwiches, which she arranged on a plate for us on lacey paper doilies.   She brought the plate into the dining room, feeling like she had utterly and completely failed as a mother (as in  “I can’t even feed my kids”.) Annie and I were so excited at the site of that plate all set to look like little finger sandwiches at high tea, that we squealed “mom!! Why have you never made this before?!” and immediately burst into our best British accents as we ate the sandwiches and drank our “tea” with our pinkies sticking out (okay fine, it was water, but nobody was gonna tell us that).

 
I’ve told that story a million times before.  And I was just telling it for the million and first time, when it hit me.  Not the poignancy of the moment – that was the point, right?  But the fact that we, who were on welfare and could barely afford shampoo most weeks (we used bar soap on our hair a lot) had DOILIES just lying around.  You know. The usual.  Just some lace doilies next the salt and pepper. No biggie.  And all the times before when I told that story, it was no biggie. Of course we had doilies. Because no matter what, my mom never lost of her sense of play and she never lost her knack for making things special.

 
So that’s all just to say that I could totally see her there in the chemo room, wearing one her fabulous hats that she reserved for the most special occasions (like high tea the Mayflower or the Kentucky Derby), plastic martini glass aloft, pinky akimbo, toasting to the halfway mark and saying something awesome like “Here’s to cancer: thank you for everything you’ve taught me. Now scram!”  What can I say; she was a sucker for a good party.




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Grateful

11/25/2010

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Happy Thanksgiving people! Like everyone else, I’ve been stuffing my face with mashed potatoes, watching football (Sweet Jesus, the Lions are so bad) and reflecting on what I’m thankful for.   It’s been a rough year, but in a lot of ways the hard stuff has really brought into sharp relief the things that really matter.  And when it comes to those things, I feel really blessed.  So here, in some semblance of order, are the top ten things I’m grateful for:

  1. Free range, organic turkey.  Especially when it’s delivered direct to your door.
  2. Matching sisters PJs
  3. Polar Bears
  4. Bruce Springsteen
  5. Proper thunderstorms, fireflies and sledding
  6. The little girl in this YouTube video. Damn, she cracks me up.
  7. My sweet little niece and her ridiculously adorable laugh.
  8. Having all my sisters in the Eastern time zone.
  9. A 90% cure rate.
  10. All of you. 

    I can’t even begin to put into proper words how much the love (and t-shirts and homecooked meals and care packages and texts/phonecalls/emails of support) have meant this year.   My childhood friend Julia, who I hadn’t talked in years, just sent me an email.  She’s battling breast cancer and this is what she told me:

  11. I have nothing good to say about cancer, but I can say that, in my case, it revealed some good things to me. The biggest of these realizations is that I am, and I think we all are, part of something much bigger than we ordinarily recognize. Once my diagnosis was made more or less public, people from every nook and corner of my life, both past and present, offered their support in every imaginable way. People sent cards, brought food, provided child care, brought trashy magazines, cleaned my house, donated to the Pan Mass Challenge, came over for visits, took me out places, all sorts of things. All that support was extremely helpful in every practical way, as it was meant to be, but it also showed me that I matter to the universe in a way that I had not recognized.

    It’s beautiful and right on, and perfectly sums up how I feel about what you’ve all done for me this year.  So thank you, for showing me that I matter to the universe. Thank you for reminding me that we're all interconnected. By the simple act of reaching out and being my friend when I’ve needed it most, you've shown that you matter too.

     

     

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Vulnerability is the New Black

11/18/2010

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Monday was round five out of 12 for chemo.   It all went pretty well.  I set a personal record for most minutes awake during a chemo session, thanks in part to the fact that Annie was my chemo buddy for the day and we had a lot to catch up on.

I meant to post this earlier in the week, but I got sidelined with a nasty
ear/nose/throat thingy that has really knocked me for a loop.  It also put the fear of  G-O-D in me, since my doctor has said that if I get the flu, I will have to go to the hospital. Do not pass Go. Do not collect $200. (In fact, I apologize in advance if this post is a little rambly - I'm kinda hopped up on Sudafed.)

It’s such a weird thing to live in fear of getting sick, especially since I’ve never been much of a germophobe.   Some of my friends open public restroom doors with a paper towel (you know who you are).  I have no problems kicking off my shoes and going barefoot in a crowded bar (especially if those shoes are getting in the way of executing some sweet dance moves).  I’m also a devout follower of the 10-second rule.  When you’re both clumsy and a fan of yummy treats, you sort of have to embrace that rule, or you’re just setting yourself up for a lifetime of heartache.  

But now, thanks to my battle-weary white cell counts, a cold is not just a minor annoyance -- it's some life-threatening boogey man that could land me in a serious world of hurt.  And quite frankly, I don’t like it. Not one bit. It makes me feel...vulnerable. 

On paper, I’m pro-vulnerability.  I think sitting with discomfort, embracing it, and listening to whatever it has to teach, provides a rare opportunity for grace, for moving closer to understanding all of those questions that usually don’t have answers.   So in theory, I love vulnerability. Love it.  Big fan.

LIVING it, on the other hand, is another thing altogether.
 
It’s not just the cold/sore throat/achey thing (although that does suck), it’s moving out of my apartment and back “home” to DC, getting winded just walking up a flight of stairs, and relying on someone else to pay the bills.

(In a twist on the 70’s show of the feathered bangs, Charlie is my Angel – although as he put it “you must have really f***ed up in a previous life to get ME as an angel, like I can hear you saying 'I was expecting a beautiful maiden with the long hair and the wings. Who sent me the cranky Italian!?'”) 

Unlike past break-ups, or broken bones, or getting the car towed – or any other of my countless dances with feeling fragile, I don’t really have a choice this time. I have to let vulnerability lead.   And even for all of my lip service to the contrary, I've really been fighting it. 

And then I saw this TED talk by Brene Brown.   She's a sociologist who studies issues of empathy and vulnerability and her research has led her to this conclusion: the people that are the happiest, the people that feel the most connected, believe that what makes them vulnerable, makes them beautiful.  For me, it's realizing I look good - with or without hair. Or that accepting help can actually bring me closer to people I love, not make me a burden.  Or finally understanding that I don't have to do so much,  that sometimes it's okay to just be.

Who knew having cancer could be so beautiful?
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She Blinded Me With Science

11/2/2010

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Yesterday marks 4 chemo treatments down. That's 33%, or one-third of the way, for those of you scoring at home.  I gotta say, the port is pretty great. The entire chemo experience was so much more comfortable and I like the fact that I couldn't actually feel the poison running through my veins.  Nice touch. It also meant that I didn't have to keep my arm straight for 4+ hours. I'd like to say that I used my new found freedom to write the next chapter of my novel, but instead I curled up like a baby and slept for the whole time.  Which was also pretty great. 

I wore some awesome armor courtesy of my friends Milana Homsi and Declan McCullagh.  I think the message pretty much says it all. And while I normally learn more toward the intuitive than the scientific, I really can't argue with the 90% cure rate.  I also can't argue with the fact that the egg-sized lump in my neck is now the size of a lima bean. Or "3 cm" as my doctor calls it.  He knows that because every time I see him, he measures the lumps with a weathered looking, laminated ruler he keeps in his pocket.  Let's just say the first time he busted it out, I was a little nervous.  As Charlie pointed out, it was ironic to watch him use it while I was wearing this shirt. 

My hair is fighting the good fight, but continuing its slow, steady march toward oblivion. I'm thinking about having a head shaving party.  You're all invited.  There will be cookies and champagne and cocktails with umbrellas in them.  Charlie and my friend Marshall are shaving their heads in solidarity, which is so sweet it makes me wanna cry.  (Most things, do these days. I think cancer has made me even softer than I was before, if you can believe that.)

It was 40 degrees today so I wore one of my new snazzy hats that my friends Kate Wrigley and Mike Guerrino got me. I got lots of compliments, which gives me hope for my impending baldness. That and the super luscious new make-up I just bought. It sparkles.  And who doesn't look hot in sparkly blush?

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