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  Adventures of a Girl with Hodgkins

The Year of the Dragon

4/13/2011

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Today is my birthday.  My for real birthday.  As of 9:48pm, I'll officially be 36 (or as my dad and Charlie have pointed out, starting my 37th rotation around the sun, which while it may be true, is not really what I'm choosing to focus on, especially since I still feel more like 26 in the first place.)  

Every year since I can remember my mom would call me on April 12th sometime before midnight and we would have "the birthday talk".  This basically consists of a series of questions including "what was the best thing about being (insert age you're leaving behind here)?"  "What was the worst thing?" and "what are you most excited about for (insert age you're turning here)?"  In all of my 34 birthdays for which she was alive, she never missed a talk.  I remember once, before cell phones (yes, my little sisters, I'm THAT old) I broke away from a study group at Denny's where my roommates and I were cramming for finals and called her from the payphones by the bathrooms at 11:48pm, just to make sure I didn't miss it. 

This year my sister did the honors, and while I really miss having that conversation with my mom, I have to say, Annie handled her duties with a grace, enthusiasm and irreverance worthy of Linda Ross.   

Needless to say the best thing about being 35 was Aubrey's birth (which I almost didn't mention since I thought for a second that it happened when I was 34.  The whole "lost year of 2010" has really f''ed with my sense of time.)  The worst was, hands down, chemo.  Not so much cancer, but chemo.  I want to be careful about dissing on cancer too hard.  Having cancer taught me so many valuable lessons about living, about who I am, what I'm capable of, what matters and about how I need to readjust my life to create happiness and balance for the next 60+ years.   I am grateful for these lessons and I don't want the universe thinking otherwise. Not only do I not want seem like an ungrateful byatch who can't accept a gift (even when it comes wrapped in newsprint from the Classified section), but I don't want it to think I missed the lesson and therefore need to repeat it. I got it. Loud and clear.  So cancer was actually one of the best things about being 35. 

Chemo, on the other hand, can suck it. 

As for what I'm most looking forward about 36, that's a little harder to pinpoint. Even two months out from chemo, I'm still trying to get my feet under me. To feel at home in my own body. To embrace what I'm capable of when I'm not forced to rest 20 hours a day. I'm working on my writing and am looking forward to finishing the book I'm creating. And I hope to tell more stories through my film work, too.  Mostly though, I look forward to slaying more dragons.  See the dragon of the "dragon slaying princess" fame is not really cancer.  That's only last year's incarnation.  I've been calling myself a DSP for many years, well before the first little, marble-sized lump reared it's ugly head. Because at its root, the dragon is fear.  And that takes all forms.   

The gift cancer has given me is to embrace my own strength and creativity and awesomeness.  And to take more naps. But mostly the creativity and awesomenss part. And that requires slaying dragons. Like the big green one that says "you don't know if you want kids? you'd better hurry up. For all we know you're ovaries are shriveling AS WE SPEAK"; the purple and black one that whispers "you need to imitate what other peoples' "success" looks like. Oh look you fell short again. Well, you obviously suck, so you might as well just pack it in now"; or those little small but persistant ankle-biter scaly ones that say "if you say that, people won't love you/hire you/want to play with you. Just sayin'. But really, you'll be old and alone.  All alone. And broke."   

It's amazing how they know exactly which buttons to push.  And they *really* seem to enjoy it. It's enough to drive a girl to drink. Or take up arms. But like the Rumi quote says those things that scare us most usually just want our love. So basically I feel about my personal dragons the way that some people feel about the homeless or people whose religions they don't totally understand.  Luckily cancer has taught me a lot about love -- both cultivating it in myself with gentle surrender and mindfulness and receiving it from other through homemade soup and t-shirts and visits and the cleaning out of the bathtub. 

About those dragons...I think I'll name the green one Pete, the purple one Homer and those little snippy ones the Santorum twins.  

So here's to 36. And to taming those dragons with lullabies from my higher self and writing exercises that summon the divine and lots more time with my toes in the sand. But if anything like chemo comes around again, I'm not afraid to pull out the nunchunks.  Sometimes a girl's still gotta show she's not to be trifled with.
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Letters from La Jolla

3/16/2011

10 Comments

 
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I’m here in La Jolla California, getting in a nice mix of work and R and R. I came to San Francisco for my friend Marianna’s wedding and then took a drive down the coast so I could put my toes in the sand on the beach here. Except for the occasional jaunt up to New York, chemo had pretty much kept me chained to DC, so it’s nice to be able to get out to SF and LA and to hug in person all of those people who have been cheering me on from afar these past six months.

I keep calling this California trip my “victory lap”, an extension of the post-chemo party. But the truth is, except for the when I look in the mirror and am still (always) momentarily shocked that the woman starting back at me is kinda bald, cancer feels like a distant memory. 

Except for when it’s not. Because while I mostly feel pretty great and happy to have made it through and out the other side in one piece, I also feel a little out of sorts kind of like I’m in limbo.

The last time I was in La Jolla, I was filming scenes for an Animal Planet series.  I can remember driving these streets, along the beach, through the hills and walking Torrey Pines State Park scouting for the perfect locations. That was seven and a half years ago.  It seems like another lifetime.

My friend Michi described her own experience with cervical cancer as “surviving a head on collision with the universe.”  And while I feel lucky that I made it through chemo in better shape than most, I understand what she means. My eyes are sunken and lined with dark circles, I have scars on my chest and arms (from the port and the rashes, respectively), my joints ache and I’m still tired most of the time. I feel like chemo has aged me at least 10 years. Kind of like what happens to dudes after they become president, except I don’t have to worry about who has the nuclear football. 

In the coming weeks as my system starts to detox and heal, I know my body will move back toward normal. I also know that emotionally and spiritually, I will never be the same. 

I never wanted the cancer to define me.  Even before I started treatment, words like “survivor” made me cringe. I thought somehow I was different, special. I wasn’t going wallow in the “cancer experience” or get bogged down by it. Cancer was something to move through, to get past on my way back to my “real life”.

But my life has sort of taken on this dividing line: before 2010 and after. And as with a lot of things post-2010, I get it now.  My perspective has totally shifted. Now, like Ringo, I"m just happy to be here.  Now I see cancer not as something to “get over” or move past, but a place to grow out from.

A yoga teacher once told me that the word limbo gets a bad wrap. That if you can embrace the uncertainty, limbo is a really powerful place to be. It's where all the juicy stuff happens that prepares you for the next phase of growth.

I know this whole experience has changed me, I’m just not totally sure how. That will reveal itself in its own good time. For now I will settle for some sand between my toes and the knowledge that while I may not be special, I’m something better. I’m a survivor.

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Go Shorty, It's My Birfday

2/23/2011

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Today marks chemo treatment 12 of 12. That’s 100% for those of you scoring at home (I’ve been waiting 6 months to say that!!!)  It’s a momentous day that almost got eclipsed this week by work and a really awesome case of the worse hives ever.  (It’s sort of like chemo’s parting gift to me -- Thanks for the memories chemo. Don't worry,  I won’t forget you. Ever.)

Yesterday while I was at the dermatologist to try and get rid of said hives, Dr. P congratulated me on getting to my last treatment.  “It’s a big day!” he said. And for once I said “thank you. It is a big day” and meant it.  Before this, chemo was just something I had to do, something I endured because I had to (kind of like a whole bunch of root canals. Without novacaine.)  But now that I’m actually here and it’s almost done, I do feel like I made it. Like I accomplished something big. Or at least survived with my sense of humor marginally intact, which feels like a big accomplishment in and of itself.

My stepmom texted me last night to ask me what my “chemo eve” resolutions are.  As in “you’re done with this chapter. You get a fresh start. What do you want that to look like?”

It’s a little hard to say for sure, because like so many “opportunities for growth” you don’t really appreciate them until they’re done and over with and you have a little perspective.  When they’re happening they usually kinda suck.  And even though I’m at the end, I think the lesson in all of this won’t be evident for months or years to come.  That said, I thought long and hard, and so from where I stand now, here are my “chemo eve” resolutions:

  1. Get more sleep and eat more vegetables
Because I learned that I’m not unbreakable, that my body has limits and if I want my body to be nice to me, I need to be nice to it.  This is also a good rule for every other part of life too.

2.     Train for a marathon
Because I’ve also learned that my body is stronger and more resilient in the kind of ways you don’t understand until you’ve tested the limits. It’s capable of beating cancer and surviving ritual poisoning for 6 months and bouncing back. Plus I’ve always wanted to run a marathon and have continually put it off, which brings me to…

3.    Stop putting off my life goals for “maybe someday”
Warning: this is where I invoke the cheesy cliché about life being fragile and precious and how you only get one go ‘round in this body.  That’s because well, life is fragile and precious and you only get one go ‘round in this body, which you appreciate a lot more when you face the prospect of losing it. So I’m going to run a marathon and write my book even though I don’t totally know the story goes yet and direct my own film even if I don’t have the funding in place  and visit all the countries that start with an “I”, also Greece. Oh wait, Iran and Iraq both start with "I"s don't they?  Okay maybe I'll stop at India on that one.

4.    Reach out, pay it forward
More than anything this whole experience has really shown me how important it is to reach out, the power of connection. You can’t imagine how the simple act of sending an email or a text or a pair of fuzzy socks in the mail can make someone’s whole day, but I’m here to tell you they can. Now that I’m finishing up with my rough patch, I’m going to harness all of the energy and support and fuzzy socks love that you’ve showered on me the past six months and do my best to do you proud by reaching out to other people who need it.

5.     Practice gratitude daily
I’m usually a pretty optimistic person, but these last six months have really put that to test, and I can say without hesitation that gratitude has carried me through. When so much feels so heavy, it’s easy to get crushed unless you take time to remember why you should get out of bed.  That’s why I have taken to spending a few minutes each morning to thank the universe for at least three things I feel lucky to have in my life.  Some days all I can muster are things like peppermint tea and bubble baths, but everyday my list includes all of my amazing family and friends. You’re enough to make me feel like the luckiest girl in the world – even on chemo days.

6.      Follow my heart with intention
I’ve tried to follow this mantra my whole life, but I have to admit that in the past, it’s been way too easy to get caught up in the rat race, to listen to the nagging “shoulds” that programmed in, without really thinking about why I’m doing what I’m doing.  Now that I’ve spent six months just putting one foot in front of the other out of necessity, I cringe at the prospect of doing it by default.  Whatever I choose to do, I’m going to do 100% with my whole heart.  Anything else is just a waste of time.

7. Stop sweating the small stuff
There's nothing like being bald to put all those times I stressed over a bad hair day, in perspective. Ditto for worrying about the size of my thighs and for taking things personally.  Imagine how much more time and energy I would have for following my heart and paying it forward and marathon training and book writing and vegetable eating (not to mention playing in bouncy castles) if I just let go a little more and said f* it a little more often.

I'm sure I could think of a few more but the nurse has ported me up, my dad and Annie and Jeff are on their way down and Charlie is decorating the treatment room with streamers and balloons. The receptionist just walked by and stopped to see what's going on (I’m going to go out on a limb and say it’s because I’m wearing a tiara…we take this last treatment celebration business very seriously). She asked if today is my birthday. I guess in a way, it is.

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My Life As a Grizzly Bear

2/7/2011

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Charlie hates winter. A lot.

He lived in LA for ten years before moving to DC and you know that old quote about leaving California before it makes you soft?  Too late. I know, I know, there aren't a lot of people who really *love* winter, but he hates it with a depth and passion I usually see reserved for bedbugs and pedophiles.  
    
That's all just to say that after four solid weeks of snow and freezing rain and the kind of icy winds that cut through your soul, he's gone from merely cranky to downright despondent.  I go back and forth between trying to cheer him up by plying him with chocolate, and telling him to put on his big boy pants and suck it up until April. 

Then I remembered something my very wise friend Jen Steinman told me last March. I was visiting New York after weeks of holing up at my sister's house, dealing with various facets of small estate law and trying to wrap my brain around life with without my momma.  I was talking to Jen about what was next, what the future might hold, when I would come back to New York, back to my "normal" life.  "Slow down" she said, "You've just been through the ringer. Think of it like this: you're in the middle of your winter. Spring will come again when it's time, and then you can break out the sundress and flip flops and dance in the street.  Right now you need to let yourself put on flannel pajamas and hibernate."  I loved that image.  And it was a total relief. The truth was I had no *idea* how to get back to normal -- or what that even looked like.

By May I was feeling a little lighter. My sister had her baby and all that new life
goodness was like the first whiff of spring.  Two days later I had my biopsy and got the news that would knock me back into the cave for another nine months.

I've never actually been a bear, but I can imagine that after sleeping in one position in the dark for a whole season, your muscles get stiff and your senses get dulled and when you first stick your head out of the cave, the sunlight hurts your eyes. That's kind of of how I feel about the end of chemo and the beginning of the rest of my life.

This weekend, all of my hibernating came to a head in a little emotional breakdown that basically looked a lot like me sitting on the couch and crying for an hour straight. I felt like I had lost all perspective and like I couldn't take one more minute of winter.  Kinda like...Charlie. 

Don't you just hate it when your own words come back to bite you in the ass? Empathy is a great equalizer that way. 

As Charlie put it sometimes it's not about making the best of it, or sucking it up. Sometimes you've just got to wait it out and hold on until spring.  And as I sit here, hooked up to the drip for chemo session #11, I can almost hear the birds chirping.  So here's what I"m gonna do:  I"m gonna fix a nice cup of hot cocoa and then change into my big girl pants -- the flannel ones.  Because let's face it - spring may be just around the corner, but it's still cold outside.
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The Little Toyota That Could

1/28/2011

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I’m sitting here in DC watching snow fall over the trees and, with apologies to those who may or may not hate winter (you know who you are), it’s beautiful.  What’s not so great is the fact that our power went out on Wednesday and as of 4pm today it’s still not back on. This is especially problematic when you have electric heat and a high of 19. 

I spent most of Wednesday night in the dark, staring out the window at cars sliding all over the street as they tried to make like the Little Engine that Could up the hill on Tuckerman Lane. I saw a Toyota Camry make it after a few tries. Ironically, a giant Ford pick-up truck did not fare so well.  The mood was generalized, every-woman-for-herself chaos. The street lights were all out and drivers that weren’t abandoning their cars, were driving down the wrong side of the street trying to maneuver around an extra long Metro bus that sat stranded, smack in front of our house. The only thing missing was the Four Horseman of the Apocalypse, charging up the street with banners flying to rape and plunder, or maybe direct traffic.  I heard later that drivers were stranded for something like 13 hours on the GW Parkway and over 100 cars were simply abandoned.

I hate to say it, but I took some solace in all of this.

I mean, don’t get me wrong, I don’t *really* want anyone to suffer -- or god forbid freeze to death in their Audi -- but all of this chaos makes me feel less…alone. My life for the past year has increasingly felt like the aftermath of a natural disaster with all of the broken infrastructure, flattened neighborhoods and disrupted routine. (Although if you can attribute the lymphoma to the 8-diet–coke-a-day habit I consistently fed in college, then I guess it’s not so “natural”…but I digress.)

Monday marked chemo treatment number 10.  5/6 of the way there. 83% done. The initial flurry of activity around the diagnosis has died down.  Cancer is no longer this shocking and novel thing. It’s just life, except that in the wake of my little personal earthquake, the landscape looks different.  Over here I’ve learned that grapefruit juice (temporarily) gets the funky taste out of my mouth, that I’m good for about four hours until I become like an over-tired three year old that skipped naptime, and that even after I’ve turned down the 12th happy hour invitation in a row, my friends (god love them) still keep inviting me.

I have good days – like most of last week when I was in New York watching footage and writing scripts and feeling like Stella with her groove back.  Then there are the other days.  On those days it’s hard to remember that this is all temporary, that in six months I’ll be off shooting an interview or sipping a mimosa at brunch or lying on a beach somewhere, rocking a pixie cut and something resembling a normal energy level. On those days it feels like I might be cranky and lethargic and bald forever.  On those days, I can kinda relate to the guy that I wrote about back in October, the one who held his arm like a wounded paw and yelled at the nurse that he didn’t want the shot. I hope that guy is somewhere having a frozen margarita right now.

That’s all to say I like the snowstorm because it kind of levels the playing field.  For one day at least, we’re all in the same boat – just reacting, scrambling, invoking Plan B (or E, or F).  It’s also a good reminder that feeling sorry for myself is a fruitless exercise.  Shit happens.  Life ebbs and flows.  Sometimes, when you’re focused on getting home and popping open a bottle of wine and flipping on the TV to watch “American Idol”, the tires start sliding on your pick-up and you can’t make it up the hill and all of a sudden you’re walking home in a blizzard.  I’m guessing it’s not as sucky as chemo, but still, it doesn’t sound fun. 

In fact, at the moment I sat watching all of this unfold out the window, I was feeling very grateful that I wasn’t that guy (even with the ever present Drain-o taste in my mouth).  And if I’ve learned one thing this year, it’s that finding gratitude can carry you through a lot. Gratitude and snow angels. If you feel bad about life while you’re making a snow angel, you’re doing it wrong.

So thank god for snow, and for that guy at the post office (and the rest of the “everyday angels” I’ve met on this journey) and for grapefruit juice and for slowly getting my mojo back.  It’s gonna be a process, but then that’s what that Toyota Camry was thinking about halfway up Tuckerman Lane -- and she made it.

 




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Save Me Lena Horne

1/13/2011

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Monday marked treatment number nine of twelve.  That’s 3/4 of the way done, for those of you scoring at home.   The most exciting development is that my doctor agreed to stop giving me any more Bleomycin. “Bleo” as the nurses call it, is the “B” in the ABVD and causes all kinds of lovely side effects, not the least of which is possible lung toxicity.  I’ve been having more and more trouble with breathing lately (getting winded walking up stairs, etc…) As it that weren’t enough fun for now, my fingers alternate between being numb and unbearably itchy and I’ve developed all these little hive-like bumps all over my hands. They’re like mosquito bites, if the mosquitoes were on steroids and shooting meth. All of this seems to be courtesy of Bleo, so even more reason to celebrate its departure from my life (“thank you for everything you’ve done for me – now scram!!”)

It’s also another testament to the beauty of the second opinion.  Dr. Matasar at Sloane Kettering was the one who mentioned studies that show that stopping Bleo after the 8th treatment has no real effect on overall cure/recurrance rates, and that by treatment number 8 you’ve gotten as much “bang for the buck” as you’re gonna get from the Bleo.

My doctor here in DC hadn’t yet heard of these studies and has never had a case before where he stopped the Bleo early, but was willing to defer to my request, based on Dr. Matasar’s opinion and a lung function test I had last week which showed “decreased diffusing capacity” (fancy doctor speak for “I can’t exhale as fully as before”).  Score one more for being your own best advocate! Viva la revolucion!  Yes We Can!  Stick it to – oh, sorry, got carried away there.

Three more treatments to go and I would like to say that I can see the light of the end of the tunnel, but in keeping with the marathon metaphor, I feel like I’m hitting the wall. Like my legs are moving but I’m not really sure where I’m going. I feel feverish and nauseous, my thoughts are often fuzzy and jumbled and I generally feel like crap most of the time. I have lost track of when I’m hungry because I mostly just eat to try and get the horrible, rusty nail taste out of my mouth. I feel tired, two-dimensional and just not like myself. I have heard, more than once, that I will come out on the other side of this ordeal a different person, and for once, I’m afraid of what that means. 

Maybe I feel more fragile because this weekend was the one-year anniversary of my mom’s death. Maybe it’s all that intense sadness coming out of Arizona and what that means for the country.  Maybe it’s just that being poisoned every other week for five months eventually takes its toll on a girl.

But still, I am lucky. I know this and I keep repeating it like a mantra (or perhaps like a crazy person.) Lucky I have not vomited more. Lucky that I don’t have to have radiation. Lucky to have such a treatable form of cancer. Lucky that I’m not going to die.

But I also know if I wasn’t afraid somewhere in all of this, I wouldn’t be human.  In fact I just read about these women who were preparing to do a fire walk across hot coals as part of some sort of leadership training ritual.  All of the women were talking about how they were scared that they would get hurt, or chicken out halfway through, all except one. She was quiet and confident and didn’t talk about how scared she was...and she was the only who got 3rd degree burns on her feet. So there you go.

Despite the fear and anxiety, I keep reminding myself that this is curing me and that in a couple of months this will all be behind me.  But I still wasn’t totally convinced. And then yesterday I got another one of those little signs from the universe that I love so much. 

I was in the elevator at my doctor’s office, fresh off of another Neupogen shot.  I was trying hard not to throw up, anxious to get back home and into my pajamas, and as much as I hate to admit this, feeling very sorry for myself.   Then the doors opened on the 7th floor, and there she was: this feisty little woman in her 80’s who looked like Lena Horne, if Lena Horne was 4’11.  She was wearing a red leather bomber jacket and her hair was all cute and fly, make-up was flawless -- she looked like sunshine with feet and I swear she practically radiated angelic light.  As we descended toward the lobby, she started singing softly, using her cane to steady herself as she bopped along with the music.  It was so contagious that everyone on the elevator smiled and a few others started bopping too.  Then she got off on G2 and sashayed out the door.

The whole thing lasted about 20 seconds, but it was just what I needed. So thank you Lena Horne for reminding me that it’s really not that bad, that life is what you make it, and that it doesn’t matter what is on the other side of this, because if you can still face the world with a smile and a song, that’s half the battle.

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Once Upon a Bar Stool

12/31/2010

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So I am sitting on my couch waiting for my friend Kricket to arrive.  She’s in from Chicago for New Year’s and needed a couch to crash on, so we volunteered ours. I think she’s awesome, but to say she’s a great friend would be a stretch –  in fact I haven’t seen her since the night we met,  two years ago in DC.  It was Christmas Eve, she was tending bar, and Madam’s Organ was sort of a last resort. My friend Deilia and I realized that we were going to be flying solo Christmas Eve, since our mothers had retired to bed and our siblings were off enjoying the holiday with their respective partners in disparate corners of the country.  We thought we would join the rest of the rowdy, fun-loving, orphan souls out for a Christmas Eve drink.  We soon discovered those lost souls amounted to exactly 4 people – myself, Deilia, Kricket the bartender, and some guy nursing a gin and tonic and recommending the nachos. 

I remember that night clearly. I was feeling strong and alive and full of possibility.  I had decided to pull up stakes in San Francisco and relocate to New York and was making plans for an April move.  I didn’t know it yet, but I was also just about to find out that the doc I produced, MINE, had been accepted to the South by Southwest Film Festival in Austin. I also didn’t know that I had cancer and I definitely didn’t feel sick. I *felt* like the world was my oyster.

That guy from the bar turned out to be Charlie and here I am sitting on his couch in the apartment we share, waiting for Kricket to show up.  Do you ever have those moments when you think “if someone had told me five years ago that I’d be (fill in the blank)….?”  Well if you had told me when I stumbled into that bar, that two years later I’d be living with that guy in DC while he nursed me through chemo…well, I’m not really sure what.  But I am pretty sure my reaction would have made for some great TV.

Flash forward a year after that, to exactly a year ago tonight. I am loving my new life in New York, really starting to put down roots and establish a community.  MINE is fresh off of an Audience Award win at South by Southwest and a distribution deal, and we’re gearing up for a big theatrical premiere in New York the third Friday in January followed by a homecoming screening the following weekend in New Orleans. I think I know what’s important to me, I think I have it, and I can’t remember being happier.  I am home for the holidays and visiting with my mom, excitedly telling her all about it. I am totally oblivious to the fact that two weeks later she will be gone, and that on the third Friday in January, instead of going to my big New York premiere, I will be standing with my sister giving her eulogy.  Mostly I am totally oblivious to the fact that there is still so much I have left to tell her, ask her, dissect with her and that I’m running out of time.

Which brings me to now, on the day tailor made for reflecting back on the last year and trying to envision the one ahead. A lot has happened in the two years since I met Kricket, and her impending visit has me ruminating about life and destiny and serendipity and things like that. I’m living with the guy from that night, someone I didn’t even know existed two years before, when I didn’t know I was sick, didn’t know I would lose my mom, didn’t know I would need to be helped through that broken heart, the diseased blood.    And I can’t help but think how amazing the universe is -- because while you can’t see what’s about to knock you down, you also can’t see what’s being put in place to help pick you back up and dust you off.   And you can’t know when you first meet someone, or visit a new place, or eat a seemingly innocuous plate of nachos, what’s happening at that exact moment that's conspiring to bring you growth and expansion.

My life looks completely different than it did on December 31, 2009.  In twelve short months, I’ve buried my mother, helped bring my niece into the world, and looked my own mortality in the face. I feel tired, nauseous and a little like I just survived a serious campaign of slash and burn.  I also feel full of possibility and hope, and like I am starting to understand what really matters. My mom’s death has brought me even closer to my family and friends and taught me to hold the people I love tight and to never take a conversation, a meal, a moment with them for granted. Fighting cancer has deepened my sense of empathy, strengthened my voice and brought who I am -- and what I want -- into sharp relief.  I feel like the world is my oyster.

So I can’t help but wonder, what’s happening right now, unbeknownst to me, that is opening the way for all kinds of beauty and wonder? What is this year’s version of that bar stool on Christmas Eve?  What are the things that I’ll look at back at on December 31, 2011 and think, “If I’d known then…”
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Ding Dong the Witch is Dead

12/17/2010

13 Comments

 
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I’ve been toying with this title for this blog post all week. I like it because if my doctors are to be believed, I want to climb out onto my fire escape and shout that over and over again from the rooftops.   I haven’t yet because a) I don’t want to jinx myself and b) I like my apartment and I don’t feel like getting evicted.  Being cancer free and homeless isn’t quite as exciting as just being cancer free.

Basically, I went in for my half way PET scan a week ago Monday and the results show no trace of cancer in my body.  That’s right:  Zero. Zip. Nada. I realize this is big news and I’ve been chastised for not making a bigger deal of it, which I think warrants an explanation:

First, there were just words on a lab report that said things like “lymph nodes considerably smaller” and “no evidence of hypermetalbolic activity” – which SOUNDS good, but I wasn’t quite sure what it all meant.  If I still have lumps, I still have cancer, right?

After talking to Dr. Fishman, I learned that lumps might never fully go away, even when the cancer does, and “no evidence of hypermetalbolic activity” is just fancy medical speak for “when we feed you radioactive dye and look at your insides, all those areas that used to light up orange on the computer, showing us where the cancer is, don’t light up anymore.”  My doctor here even used the “R” word (considering I still have five chemo treatments to go, I think it’s a little premature and am superstitious about actually saying it out loud, but let’s just say it rhymes with “schremission”) 

A little back story for those of you that didn’t already know: when I was first diagnosed, I decided to leave my apartment in New York and move down to DC to get treatment so I could be closer to Annie and Charlie. Even with the decision to get treated in DC, it’s still good to have a second opinion and Memorial Sloane Kettering in New York is one of the best when it comes to all things cancer. My friend Mia hooked up me up with her oncologist, Dr. Matt Matasar, so I made the trek back up to New York just before I started chemo in September, to get his take on my situation. He helped me understand that twelve rounds of chemo with no radiation seemed best for me, but to come back and see him once I was half way done to re-evaluate. He also told me to keep taking Japanese mushroom supplements because they are cancer butt-kickers.  He’s a smart guy.  Plus he’s also a hugger, which I appreciate.

I didn’t want to make any announcements until after I had that follow-up appointment with Dr. M because I felt like hearing it from him would make it more real.  And when everything else in your world feels like echoes of life down the rabbit hole, reality is an important, and sometimes elusive, touchstone. I saw him yesterday and basically he concurred. In fact he said I get an “A+” which hasn’t happened since sophomore year of college, so I’ll take it.

I’m grateful, really I am.  It’s just that the irony of it all is hard to digest sometimes: before I got diagnosed -- even though I actually had cancer -- I felt totally fine.  Once I started chemo, I felt sick and nauseous and achy and frail and well, like a cancer patient. And even with this encouraging diagnosis, I still have to finish the rest of my chemo (think how they make you finish the entire course of antibiotics even after your throat stops hurting) and while I realize that in the big scheme of life, two and a half months might not seem like a lot of time, it feels a lot longer when everything tastes like Drain-o.

Basically, as my sister puts it, I’m a cancer-free cancer patient (who still feel s like a for-real cancer patient.)  And since I also know enough people who have been declared cancer-free, just to have that title wrenched from them a few months later with another test, I’m also a cautious cancer-free cancer patient. 

On the other hand, I’m also an optimistic cancer-free cancer patient who believes strongly that thoughts become things and “science, it works bitches,” so here’s what I’m going to do: I’m going to have a very small nip of the real bubbly tonight to celebrate, because I feel it’s necessary and also that God would want it that way.  But I’m saving the real celebration for when I’m done with chemo and get that all-important last scan that confirms that the storm is over, the house has hit its mark and I can rock the ruby slippers with confidence.  Then we will bust out good stuff, open the drink umbrellas and party like rock stars. Until then, I’m going to keep my “ding dongs” to a faint, but triumphant, whisper.

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Bald is Beautiful

12/6/2010

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I finally took the plunge and shaved my head. And it feels great, which is a little weird when I remember that no so long ago, I really didn’t want to be bald. Back when I was first half-diagnosed, before the full magnitude of what having cancer really meant hit me, it was actually one of the things that scared me most.  I realize that sounds silly now, especially on the heels of what was a rough several days last week with fatigue and nausea, but I guess that’s how it works. Your priorities can be kinda skewed before life kicks you in the ass and shows you what really matters. 

Adriamycin causes hair loss in 99% of patients.  I’m a gambling woman, but 1 in 100 are some tough odds, even for me. So I began to embrace the inevitable. I took the bull by the horns and cut the curls. I bought a ton of cute hats. I invested some serious (wo)man hours into learning how to tie a headscarf.  And I waited for the morning when I would wake up, look in the mirror and just know.  When I would look less pixie and more, well, sick.

Then a funny thing happened. 
My hair held on. 

I mean don’t get me wrong. It definitely fell out.  A lot. But most people are more or less bald by the third treatment.  Here I was on the verge of treatment number six and it actually looked more or less…normal.. Every time my sister saw me, she would run her fingers through it and say “it still looks good!” Even my favorite chemo nurse Dionne kept commenting on it. “You still got your hair. I think you dodged that bullet.”

By all accounts I should have felt grateful.
Excited even.
I was feeling…a little disappointed. 

I know it sounds crazy, but hear me out. When you’re facing something so outside the realm of what you had planned for yourself just six months earlier (like mainlining poison and going bald, instead of gallivanting around the world working on the next Oscar-winning documentary, for example) you really need to psyche yourself up if you want to come through it with your sanity intact. In getting myself emotionally prepared, the shaved head became like a badge of honor. The purple heart of the war on cancer.  And the more I suffered the battle scars, the more I wanted my freakin’ medal. 

Then these amazing dudes in my life both said they wanted to shave their heads in solidarity. They were ready for the party, I just had to set the date.  It was so touching and beautiful.  And I love a good party. It all seemed perfect. But I kept hesitating. It seemed silly to shave my head just because.  I still had my hair…maybe that was a sign I wasn’t meant to shave it.  And let’s face it: (I’ve said it before and I’ll say it again) no girl really wants to be bald.

My angels-in-waiting got tired of waiting and decided they were doing it – with or without me.  I went mostly for moral support.  And to take pictures.  I was definitely not ready. Not that night. Maybe next week.  Yeah, next week sounds better.

But as I watched their hair fall away, I realized that with the number two guard on the clippers, the cut didn't really look bald (at least not in the Mr. Clean kinda way I had envisioned), and that the end result wouldn’t be that much shorter than my pixie cut.  In fact, it might actually even it out (I had taken to doing “clean up” trims myself – not pretty.)  And I started to realize that whatever way the pendulum swung, I was making the whole shaved head thing bigger than it needed to be. That maybe I should stop thinking so much and just. let. go.

So I just did it.
 
Taking that first, hesitant peek in the mirror, I was surprised to find that even bald, I still look like me - with the same exact smile and the same mischievous twinkle around the eyes (or as my college roommate calls it the "I am going to shove this whole donut in my mouth and show you" gleam - but that's another story.) 

Most importantly I realized that just like my curls don't define me, neither does this new found role role as cancer patient. Either way, I'm still just Erin.


8 Comments

The Plastic Margarita Glass is Half Full

11/30/2010

11 Comments

 
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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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