Sparkle

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sparkle

I want to do something fun.  I want to show the world that you should not– DO NOT– have to wait for something tragic to happen before opening your eyes and living your best life.

What does that mean to you?  Are you living it right now?

Cancer deserves a party?  Well kind of.  Not really.  I just love an excuse for a party.  Life deserves a party.  What we’ve learned from our challenges and obstacles and struggles deserves a party.

We wouldn’t be celebrating cancer.  We would be celebrating what showed me that I can heal, maybe not physically (or maybe?), but definitely emotionally.

What would you be celebrating?

Cancer (stupid, ridiculous, life threatening, scary cancer) has taught me what really matters.  It’s what’s teaching me how to be happy.  Like, really happy (not just “I think I’m happy because I’m supposed to be”).

What would this party look like?  Sparkles, for sure.  I love anything sparkly, as SHL (and my iphone case) can attest to.

Balloons.  No filters.  Water slides?  That’s what I think of when I think of fun.

Definitely good food.  Green juice.  Seriously.  This is what I now think of as “good food.”

Cheeseburgers + juice green because life is just like that:  Delicious, juicy, the worse for you the better it tastes, chase it with a green juice and believe– know– that both are vital to happiness.  In other words, don’t deprive yourself but take care of yourself.  It really can be done. I think.  Maybe?  I’m still figuring that one out.

Cocktails of green juice and smoothies with little umbrellas in them.  Sun (with sunscreen).  Sand.

“Real” cocktails.  Something like “Angela’s Punch” from that cute little restaurant in Dublin.  A little Absolut, a little green tea syrup, some plum bitters and freshly squeezed lemon juice with a sparkly soda top.

There’s that sparkle.

Donuts.  Warm donuts.

Energy bites with cacao and almonds and coconut and flax seeds.

Music.  Definitely music.  80’s, probably. Prince, Madonna, maybe even a Girls Just Wanna Have Fun or a Manic Monday?  Mondays usually are manic, aren’t they?

Let’s have a beach party with green juice cocktails and water-slides and Madonna blasting and sparkly balloons.

Let’s not ask each other “What do you do?” “Do you have kids?” but “Who are you?”  “Are you happy?  What’s the best thing that you’ve ever done in the whole wide world?”

What is one thing that you would do if you didn’t have a care in the world?

What is stopping you?

Fear stops me.  Doubt.  I want to help people live their best lives, but I am not living mine because I haven’t figured out how to live perfectly (and of course none of us ever will).  I am living better.  I am living more authentically.  But not perfectly.

Is this an original thought?  It’s been done before, hasn’t it?  People with cancer have shared their stories.  So what’s so different about mine?

I want to have a party.  I want to celebrate– not cancer— but life.  I want to celebrate because I want life to be fun. So much of life is not fun, am I right? I don’t want to be so serious all the time (who am I kidding?  I’m not that serious.  But just enough so that I feel like I need a really kick-ass party).  I don’t want to feel so pressured, so constrained, so worried that I can’t do x,y, or z because I don’t look the way I think I should look.

What would the cover of my book look like?  How would it help?  Would it help?

Where should we meet?  When?  And how do we get water-slides to the beach?

 

 

Chapter 2: Girl

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*Please see the bottom of this post for an explanation of why I started with Chapter 2 and what it means to me.

 

How did I get here?  The words bounce around my head like a game of pong.  When I close my eyes I can still see, taste, feel the pain of the last three years.

I drove by my office building the other day and felt a story– a tape played over and over again in my mind– and yet I couldn’t quite put my finger on which story it was.  Was I sitting in my office in that brick building set back from the road when I was diagnosed with liver melanoma?  That doesn’t feel right.  I make associations with places, things, dates.

It was July 18th, 2013.  My primary care doctor who had gotten involved in the whole thing called my cell phone just after 8:30am, when I was supposed to be in a staff meeting.

“It’s negative,” she said, breathing lightly into the phone.  “The pathology report came back negative.”

My heart actually physically felt like it had an invisible clamp that had been gripping it and squeezing it tightly and suddenly it loosened; kind of like a snake that had been gripping it’s pray it constricts and then for some reason, lets the pray go.  My stomach hurt.

I remember crying, of course.  I remember telling her that in those three seconds of those two words I felt like I had just gotten my life back.

The two weeks before it had felt like my life was over; like I was technically living and breathing but I might as well have been dead and gone.

Two weeks.  Three seconds.  Two words.  “It’s negative.”

The prognosis was incurable. Maybe 10 years, maybe not. I was 36 years old.

I was newly married (3 years, still newlyweds in my mind), and had just suffered a miscarriage after well over a year of trying to get pregnant and finally going through IUI’s and IVF, blood, countless band-aids (ironically), ultrasounds, up early to drive through traffic and get to work on time, so many medicines, shots in the thigh, finally egg retrieval, tons of Gatorade and legs up (seriously) and kind bars and then embryo transfer and deciding how many to implant.  The decisions!  I still remember exactly what black pants and sweater I was wearing when my fertility doctor called with the pregnancy results.  We were living in an apartment at the time and I was in our family room right next to the kitchen where SHL was standing washing dishes at the sink.  It was February, right before my 36th birthday, and I was wearing my gray furry boots.  I would be due in October, my favorite month.

Back to the office, the tape playing in my mind.  The misdiagnosis.  The wave of life and air that filled the room and how slippery my fingers felt as I dialed my husband.  Then my parents house phone.  And then my brothers cell phone.  He was just stepping off of the elevator at work.  “Oh my g-d,” I remember him saying breathlessly into the phone.  His words carried the weight of all that we had prayed to, asked things of, bargained with, felt angry at, and maybe even wondered about the existence of.

I remember that his words sounded breathless because we had all stopped breathing for the almost two weeks that it took for us to get the biopsy results back.  The tape then loops back to the day of the biopsy.  The nurse– so kind– who wiped my tears and listened to my story.  “I think I’m too young for this,” I said, pretending like what I said could have an outcome on the results.

Another tape.  This one is of me leaning forward at my desk, putting my forehand in my hands, my elbows pressed against the cool wood of the desk.  Finally I look up at the ceiling and with bitter, angry, devastated tears in my eyes I swear fiercely under my breath, “Fuck you g-d.”

Another failed pregnancy test.

Just as quickly as I said it I knew that I should take it back.  What had I done?

But I knew that it was out there, and surely I would be punished now.

I believed that my punishment would be what had me so upset in the first place; that I’d never get pregnant or if I did, it would take years and years.  That somehow my dreams of me not just becoming a mother, but of carrying my own child, would be taken from me because I had said that I hated my g-d.  I had brought this upon myself.  It’s “magical thinking” but it still haunts me.  What if I had never uttered those words?

It’s October now.  The month our baby would have been born.

The room.  Now that I think about it that room and all of the rooms are really pretty bare.  Sterile.  A painting or two on the wall of some cliche bouquet of flowers or scene of the city that somehow is supposed to comfort but really just reminds you that you’re not home.  Not even close.  Three chairs.  Always three chairs, except for the swivel chair that we leave open for the doctor.  The paper crinkling like a crabby old man as you lie down on the table to be examined.  Hands on the abdomen.  On the legs, ankles, feet.  Any swelling?  That would mean something, I think.  Swelling.  Sit up.  Listen to your heart.  I believe if my heart could speak it would say, “Please g-d,” bah-boom, “Not me,” bah-boom, “I’m scared.” Bah-boom.”

I hear him say something about not knowing how long people with my diagnosis live.

It’s just how you imagine it to be, like a movie perhaps.  Camera pans in on the shock, music swells, the unknown hangs in the air.

And… Scene.

G-d how I wish the whole thing had been an act of some kind.  A movie, a play, any kind of fiction.  I’m just telling you a story of a girl (mid 30’s, blonde hair swept up into a messy ponytail, bubbly personality but always looks tired) who I made up who couldn’t get pregnant and then did and maybe it was twins?  We’ll never know because even though we only implanted one, it looked like there could have been two fetal “poles” but then there was no heartbeat to hear.  She went home by herself because she and her husband had (optimistically) taken two separate cars to the doctors office so that they could then go back to their respective jobs and now they’d have to do just that, pretending like everything was fine.  Everything was so not fine and going back to work that day seemed like torture so instead, she went home to call her own mother and to mourn.

A bird had crapped on the very left side of the front windshield and as she got in the car she thought about how stupid it was that bird crap was supposed to mean good luck.  It all seemed so clear now, like rain on a wedding day– these sad things that we tried to make prettier with superstitions.  There was nothing good about bird crap and there was certainly nothing good about not hearing a heartbeat.

And then a few days later she turns 36.  Soon thereafter she goes into the hospital to have a D&C, and three months after that she has another one because her hormone levels aren’t going back down to normal like they’re supposed to.  As if one reminder of a lost baby wasn’t bad enough.

Two weeks later there are lesions in her liver.  Memories that have traveled discreetly and quietly and viciously from her eye to her liver after almost eight years with no cancer treatment.  She doesn’t even find out the “normal” way, from a doctor, but sees in her online patient gateway that she has been scheduled for a biopsy.  What?

It’s a Sunday and she pages the on-call doctor.

Fast forward.  If it was a movie the screen or the weather would tell you that it is autumn.  Driving in the car with her Mom after another painful shot in her left eye for her glaucoma.  (Long-term effects from the eye cancer).  Almost all of the vision in the left eye is gone.  Shadows still creep.  Sometimes.

Three days before her fourth liver ablation surgery and her cell phone rings.  It’s her physician assistant. “Girl” must have given them permission when she started her care at this hospital years ago to let them test her blood.  She doesn’t fully remember this– who would just days after being diagnosed with a stage IV cancer– but she thinks that maybe she signed up for this because she naively thought that it may help with treatments and/or cures for her incurable cancer?

It’s the BRCA 2 gene.  “A greater chance of breast and ovarian cancer,” she hears her physician assistant say.

“What now?” her Mom mouths looking worried as the girl semi-listens to something on the other end of the phone that feels like a bomb going off in her body.  She thinks she hears “Genetics counselor,” “After you take care of this, of course,” (meaning her upcoming surgery for more tumors in her liver) and other words that are coming out of the PA’s mouth but are falling pretty much on deaf ears.

“Fuck you,” I think.  Hey, it’s better than swearing at g-d, and anyway I think this, I don’t say it out loud.

Three days later.  No surgery.  Too many tumors, my surgeon explains to my family as I wake up from the anesthesia.  Back to the oncologist for another game plan.  Let’s change things around and instead of surgery and then a systemic treatment, let’s just go straight to the systemic treatment.

I wonder if I should have a hysterectomy and I wonder it out loud to various people and I know that I’m saying it with such a straight face and such a flat affect that I have become completely disconnected from myself.  All this time I’ve been so focused on the mind/body connection and then one call and it’s like it has split in two.  It’s as if I’m in another’s body looking at this poor girl who can’t be me.  Looking from the outside in, instead of the other way around.

I wonder, and not for the first time, if I did something in a previous life that was so awful now I’m here.  I joke to my friend that maybe I actually was hot-stuff in a former life; she could actually be sitting across from Cleopatra drinking an iced latte with almond milk right now.  I don’t know what to do other than to make a joke.

Maybe I was an awful dictator, maybe I did awful things to good people.  Maybe I was a bug and I’m still not getting it right. Or maybe it all gets made up with some amazing kind of heaven.  Jewish people don’t necessarily believe in heaven, but I do.  Reunited with grandparents and just a hop over that “rainbow bridge” to visit with my beloved pets Benji, Charlie, Teddy and Cadbury.

I imagine eating the sickest ice cream sundae ever with extra marshmallow sauce, only it’s like negative calories.

What?  It’s heaven.

This feels like hell.

*This was one of the hardest things that I’ve ever had to write. You didn’t miss Chapter 1, I haven’t written it yet. I decided to start with Chapter 2 and the rawness of it all. I want the story to start with hope, not pain.  Thankfully where I am today is not where I was when I was first diagnosed, and for that, I’m grateful. #courageiscontagious #getbusyliving #kacp #teamlozier#iamenough xoxo

 

 

 

 

 

 

 

The Truth Will Set Us Free

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I never truly realized how complicated cancer could be until I faced it head on.  Part of what makes it so complex, I believe, is the fact that illness or not, we still have that inner gremlin inside all of us that tells us to care what others think.  It reminds us that we don’t have it as good as others do.  It urges us to focus on the flaws, instead of the fabulous.

I remember months ago telling somebody that at some point, I may have to undergo a systemic treatment that could be for the rest of my life.  Without missing a beat the person said, “That’s OK.”  And of course I immediately agreed with them, because that is what you’re supposed to do:  You put on your Positive Pants and nod and smile and say, “Of course.  If it saves my life then I’ll do whatever it is that I need to do.”  You want to reassure the person (and yourself) that you’re ready for battle and that no matter what, you’ll do what needs to be done.

And it’s not that that statement isn’t true, because it very well is, and it lives and breathes deep inside of you.  It’s just that maybe there’s more to it, and maybe, you want to say so without feeling like you’ll be judged or struck by lightning (or give those gremlins sharper teeth).

When you have a life-threatening disease, when your doctors have made it clear that nobody knows how long somebody can live with an “incurable” illness, your inner gremlin comes alive (if it was dormant before).  It chomps at the bit, drooling over what an opportunity this becomes to make you believe that you’re weak, that your body is weak and betraying you, that life has betrayed you and that you are unhappy and will never have what others have.  That pot of gold; that endless trail of love and laughter and family and kids and a legacy and a career and baseball games and sandy days on the beach with pails and shovels and having breakfast with the Disney characters in Orlando and watching your love grow for years and planting gardens that you never even think you may not see bloom– it all evades you (or so your gremlins want you to believe).

When I started another life-saving treatment recently, I felt a surge of appreciation, maybe even happiness luck  (whoa, that sounds weird), coursing through my veins.  I know that not all Stage IV cancers even have treatments.  Not only that, but I only have to drive 45 minutes to get it at truly one of the best hospitals in the world, with one of the top melanoma doctors in the world.  That luck or care or fate or whatever you want to call it never passes me by without a flush of deep gratitude.

But then I had other thoughts, after the thank g-d I can get this treatment and I live here and I have people to come with me to Dana-Farber and I’ll never be alone.  These are not little things, but I had other thoughts that I wasn’t sure I should even say out loud.

Like: What if I get sick?  What if I get a side-effect from the drug and it keeps me alive, but I have the side-effect for the rest of my life?  Yes, of course I worry that the treatment won’t work (that’s my #1 concern, obviously), but I also worry that I will have rashes or headaches or stomach problems forever.  Or, that I may gain weight.  It sounds amazingly shallow and absolutely crazy, doesn’t it?  Like who cares if you don’t look good in a bathing suit if you’re alive?  But that’s not really what it’s about, I’ve learned.  Really.  (Except in a society where beauty seems so important, I guess worrying about these things just makes me feel like any other “normal” woman).

What is it really about though? It’s about feeling good.  It’s about having energy to live your best life.  It’s about a good quality of life, not just breathing, but living.  It’s about feeling like something in your chaotic world is in your control.  You may have to take a drug every few weeks to try and save your life, but what if you don’t get a side-effect?  Does that mean that the medicine is not working?  (I checked myself for a rash the first 72 hours after treatment in the hopes of actually witnessing my immune system ramping up, as if it could happen that quickly?  Or somehow that would mean that the cancer cells would already be destroyed?  My heart jumps with hope even as I write that last line).

Can the two co-exist?  Can I be incredibly grateful for this treatment and also scared of being sick?  Can I be scared that the treatment won’t work and also relieved if I do get a rash?  Can I drink a green juice one day and make those kick-ass brownies another and still feel that I am doing everything that I can?  Does everything have to be this complicated, or am I making it so?

I’m afraid that if I say that I don’t want to get sick or I do want to get sick or I don’t want to be stuck at home or I am bummed (for lack of a better word, and I just stared at the computer screen for minutes on end trying to find one) about being treated for the rest of my life (possibly) that would mean that I have some part in what happens.  That my mind is connected to how well this medicine works.  I get sick, I get well.  I feel well, I get sick.  Does it really work this way?  If anything could save me from this awful stupid unfair disease, I would do it/say it.  But what is it?  A green juice + not being able to leave home from side-effects?  Or if I want to get treatment and still just feel and be a normal person, I will be struck by lightning?  Perceived by the universe as ungrateful?  Misunderstanding the seriousness of how much I need this treatment?

I promise you I don’t.

I do understand how important this treatment is, despite what may or may not come, but I also think that cancer brings with it so many different complex issues.  We want nothing but time and we want to live as long as possible, but we also want to live a full life where we can travel and work and see friends and feel good about ourselves, our bodies, our choices, our lifestyle, our experiences.  And I shake as I write this, because never before did I realize or sit down to write the thought that life may not be worth living if I get that sick that I can’t actually live.  I do not expect this to happen, but when we take down that wall between me and the rest of the world, the wall between me and you, the truth of it all comes rushing towards us.  Let us be authentic, let us talk about our fears in the hopes of cleansing and finding a greater faith, let us speak the truth out loud in the hopes of healing.  Because that, my friends, is the best part of life:  The truth, and how it really can set us free.

I’m not sure if I’m quite there yet.  But just knowing that you allow my truth to be part of who I am is, for right now, more than enough.

 

 

 

Cotton Candy in Vegas

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“I swear I can still taste that hope.”  ~ Geralyn Lucas, Why I Wore lipstick to My Mastectomy.

I take my thumb and index finger and touch both corners of my lips once more, making sure that the red that I have never worn before is not smeared like a four-year old who colors outside the lines. How embarrassing would that be?  It is just called “The Red” by Sephora and I have gotten one for G and one for myself.

Geralyn Lucas enters the room carefully (in high heels of course) and yet with a presence, and just like that I can only arrogantly tell you before it happens that she will change my life.  She takes off her huge black sunglasses that make her look like a celebrity (and I am sure that people are staring at her in this gorgeous dining room in Manhattan where celebrities sit behind curtains), and I am wrapped up in a huge hug and we are already wiping away tears.

Two hours later we cannot stop talking, and in between coffee and eggs (and more coffee!) the waiters have gently approached our table just a few times to make sure that we have everything we need.  “We’re celebrating life,” Geralyn tells one, and I think “This is my kind of girl.”

I want every second to be a celebration.

I am also scared to talk about all of this.

Another waiter approaches carefully and lets us know that if we want the buffet we may want to go now because it does close at 11am.  It is 10:50am and we have been talking for 35 minutes straight.  Another five minutes go by before we finally make it up to the buffet but then we start talking again and the waiter quietly smiles and tells it like it is:  “It is not pretty when they break this buffet down,” he says, and we laugh and quickly grab our yogurt parfaits and head back to our glitzy and chic table (that Geralyn called ahead to reserve, how amazing is that?).  We sit with our backs against a banquette and underneath the most beautiful, huge bouquet of spectacular flowers that I just know my Mom would adore.  I don’t really know what our view is because I am too busy trying to make sure that my red lipstick does not end up all over my coffee cup and more importantly Am I making sense?  Am I talking too much?  Am I crying… Again?  Does she know how cool she is?

She tells it like it is.  No holds-barred.  Is so open to answering my questions, immediately wants to connect me with Matthew Zachary (I’m too young for this/Stupid Cancer) and invites me to his cancer summit in the spring in Vegas.  The question doesn’t even fully register between her words and my brain before I know that we will be there.  Together.  Why not?  Cancer is stupid.

I ask her about her family, her diagnosis, her doctors, her book, and she answers all openly and honestly.  I ask her about sugar, because that is my question for those living with or in remission from cancer.  (I never consciously decided to obsess over that when I was diagnosed with cancer, it just kind of happened). She agrees that being healthy is wonderful but also says that caffeine, alcohol, and sugar are a super part of life!  I feel my shoulders relax; she is not one of these crazy “one muffin will kill you” kind of people. That is exactly the kind of person right now that I don’t think I should be around.  I am already putting too much pressure on myself after the doctors have found more and more tumors and wondering if it was the Coca-Cola lights that I treated myself to this summer while in Morocco that have caused this.

She shakes her head and becomes serious:  “Please, please don’t do this to yourself Samantha,” she says.  She looks into my eyes and all of a sudden our joking is put to the side and real life sinks in.  This shit is about to get real. “You are not to blame for your cancer, and having a smoothie with bananas or a brownie or a cup of coffee with milk is not going to make or break your cancer.”  Make or break.  I want to make.  I want to live.  Is what she’s saying true? How do I distinguish between the truth and fiction these days anyway?  I love her.  I love Kris.  Who is right?

But all I know, suddenly and certainly, is that I want to be happy.  I want to notice the power of my soul and honor it.  I want to live. I want to be healthy, of course.  I want to strengthen my immune system and feel strong and well.  I honestly do love my green juice and energy bites with flax seeds but I also love a latte and I don’t mean to brag but my brownies are kind of amazing, and I beg myself to just be able to release the guilt, the thoughts that hug me tight and won’t let go– that in fact, are strangling me.  I no longer want to suffocate.

I breathe.

I know that I will not get it perfectly today, or ever.  But I want to try.  Try to not let cancer grip me so hard that I miss out on my life.

“I want you to eat a piece of candy today,” she says, and I don’t even think that she’s kidding (that night I have gelato with friends at dinner).  “Cotton candy!” she says, and I laugh thinking about being almost 40 and eating cotton candy and that reminds me of being in an amusement park and roller-coasters.  This leads me to think about how I got here (because life with cancer = a roller-coaster), and how I will make decisions and how I can live with myself if I eat cotton candy and I have cancer. For any person who has ever had any issues around food, imagine that multiplied by a million and then add a few cups of guilt and shame and a fear of death and then I think maybe that’s why we can all relate to each other despite our circumstances: Because most of us struggle with finding happiness, purpose, and balance; not just those of with cancer (it’s maybe just a bit more “in your face” for us).  So much of this is about self-worth, about choices.  It’s about not letting ourselves just be on auto-pilot, thinking about what we put into our bodies but also thinking if our thoughts are punishing or loving or just how much we’re enjoying our lives.   Do we bully ourselves?  Do we treasure others above ourselves?  What is missing?  What isn’t? No excuses, no bull shit:  Are you happy?

We each get out our red lipsticks and reapply in the mirror of the restaurant, asking the waiter to take our picture.  “We’re celebrating life,” Geralyn declares again and I pull out her book and show the staff:  “Look!”  They ooh and ahh and take pictures of us with roses from the table that we hold up to our noses to show the world (and ourselves):  We’re stopping to smell life, cancer or no cancer.

She kisses my book, leaving a beautiful red imprint of her lips that have smiled and laughed and I bet tasted those salty bitter tears that come with having lived with cancer. “Thank you for being you,” she writes.

How do I thank her for being… Well, another guardian angel in my life?

I wonder what lies ahead, after our breakfast and months into the future.  I “future-trip” with Geralyn right in front of me after we talked about our meditations and being in the present moment.  I don’t want the breakfast to end.

But I’ll tell you one thing:  I’ll see you in Vegas, Geralyn, and I’ll be eating cotton-candy.

xoxo.

P.S.  Please watch this video from Geralyn’s website:  http://www.geralynlucas.com/lipstick/

It’s freakin’ amazing and could SAVE YOUR LIFE!  #courageiscontagious

Gratitude Confetti

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As I was driving home today, before dusk so the sky was still that beautiful brilliant fall blue, I noticed the trees lining the street just exploding.  Pop, pop… Pop pop pop!  Deep reds and fiery yellows and all of a sudden it was like an autumn rainbow right before my eyes.  I drove by a high school and watched as the kids ran back and forth chasing after the soccer ball, smiling to myself.  I always played soccer in the fall (except senior year when I convinced my school to let me take drama instead– we didn’t have gym class so we had to play sports), and I always hated it.  But somehow, seeing kids today playing with their jerseys and their shin guards and the bunch of sliced up oranges on the side of the field and the crumpling of the leaves and the sweet air that whispered through my car window… It just felt so… Comfortable.  Soothing.  Nostalgic.

I wondered, as I always do when I see kids playing outside, if I would have been a soccer Mom.  Strike that.  Would I have been a good soccer Mom?  We’ll never know, but if I had to put my money on it, given how much love I know my heart can hold, I would say: Yes.

But every day that I do not have children, I heal.  I do not want that love to go to waste so I let it bubble up when I’m with SHL and sometimes I try to see myself through his eyes.  In the end I just want him to know how much I love him.  I think I show him in the homemade peanut butter cup ice cream that he loves when I make, and by folding his laundry, which he hates to do.  I love to do things for him, and he doesn’t ask for a lot.

And I let my love pour out of my limbs and my heart and every inch of my soul when I’m with the rest of my family and friends; I hope you can feel it.  I think about you all every day, and every single time I do I shake my head in wonderment; how did I get so lucky?  My friends are so brilliant, kind, thoughtful, interesting, shining lights.  YOU are all so full of love.  Sometimes it feels like my own love can’t even compare, and the truth of it is that I’m afraid my heart will explode with gratitude. (I imagine little bits of gratitude floating through the air like confetti).

And so on those days, the ones where I wonder what my life truly does hold and how long I’ll be here to hold it, I come back to my memories of you.  Of our pasts, our laughs, our secrets, our jokes, our stolen moments that only you and I know about.  And then I think about the future.

We are “supposed” to be in the present moment, but sometimes I’ll sneak a glance into the future.  And instead of seeing cancer and treatments and scans and doctors and blood and needles and fear, I like to picture us– you and me– on a bench somewhere, in the sun.  Drinking coffee.  Laughing.  Planning.  Thrilled with the idea that we have time– plenty of time– to travel and experience and share and live.  To live without regret.  It’s because of you, my team, that I feel hopeful, that I can forsee (g-d willing) a long life filled with confetti.

It’s what keeps me going, keeps me fighting and so for that, I just want to say:

Thank you.

xo.

 

 

That Girl Is Me

3

As the rain pounds–hard– on my roof, my feet tucked aimlessly underneath me until they become pins and needles, I cry.  Not the pretty-girls-in-movies-tears-silently-and-slowly-rolling-down-your-cheeks kind of cry, but the awful, is-there-a-wild-animal-in-the-house, nobody-should-ever-have-to-see-me-like-this kind of cry.  I put my book down and wipe my nose across the sleeve of my sweatshirt, letting my body slump to one side.

I am crier.  Some of you may already know this and those of you who didn’t necessarily know it are probably not surprised to hear it.  It doesn’t seem strange that I cry at things like movies (Rudy is my go-get-’em-I-can-do-anything movie and it always makes me weep, especially the scene where he’s sitting outside on the bench and finally gets the acceptence letter into Notre Dame and HE starts to cry.  That’s when I just lose it!  Cue the music swelling!).  I cried like a baby when I got into the rental car with my parents after college graduation, once my Mom saw the look on my face after saying goodbye to my friends and whispered, “It’s OK, you can cry.”  I did exactly that, all the way to the airport, the 3.5 hour flight home, and OK until I crawled into bed in my parents house and wondered what I would ever do living so far away from my best friends now.  And I’ll secretly wipe away little soft tears any time my six year-old nephew tells me that he loves me.  I am a big pile of mush when it comes to Rom-Coms and anything baby-related and the underdog stories where the true heroes ultimately fight and win  (Hence, Rudy).  Also if I’m having a heart-to-heart with a friend over a cup of coffee or Sean and I are cooking in the kitchen together and he wraps me up in his arms as we stand at the stove stirring, I may tear up just at the closeness and connection between myself and another.  These connections are the crux of life.

But the strange thing is, I hardly ever cry when it comes to my own diagnosis.

This has been true all along, even when I was first diagnosed with eye cancer at the age of 28, though I cried more back then than I do now, even though the prognosis supposedly is much worse now.  It’s as though all of the bad things that have happened to me over the years have perhaps toughened me up or gave me thicker skin than I had when I was younger.  Or maybe, it’s that I’m afraid if I don’t “toughen up” I will just crack, like that egg with the guts running out.

So sitting on the couch on that rainy day, waiting for SHL to get home from work and reading my book, my tears surprised me almost as much as it does on a daily basis that I have cancer.  Sometimes I’ll pass by a mirror and catch a glimpse of myself and think, “That girl has cancer” before remembering that girl is me.

Once I started reading this book, I just couldn’t put it down.  It’s a memoir of a woman who I will be lucky enough to meet next week for coffee, and I wanted to hear her whole story beforehand.  All I knew is that she had breast cancer and treatment over 10 years ago when she was in her 20’s, lives in NY with her husband who she had a child with after the cancer, and she is an author, a motivational speaker, and has worked for ABC and shows like 20/20.

I could tell from the one voice mail and texts that she is somebody I am going to immediately like.  (You know how sometimes you “just know?”).

Sometimes when I read about breast cancer I feel removed from it.  I know that I could get it, that anybody could, and I of course do know people that have or had it.  But I think that there is so much info/awareness/support around breast cancer (after all, as I write this in October pink ribbons are everywhere; some years even yogurt covered lids are licked in support of breast cancer research).  I think that there is so much talk about Susan G. Koman and the Race for the Cure that sometimes it just gets filtered through my brain and strained out and not really paid as much attention to as it should.  And maybe that’s all because the thought of losing a breast (or two) absolutely terrifies me, or maybe it’s because I want eye and liver to get some glitz too– what color ribbon would we have? How many miles can we walk to save our body parts– more importantly, our lives?  But, breast or ovarian or cervical or liver or kidney or brain… It doesn’t really matter in the end, does it?

Cancer is cancer.

We’re all in this together.

But reading this woman’s story– diagnosed with breast cancer right before her 28th birthday, deciding between a lumpectomy and a mastectomy, married but no children, wondering if her eggs can survive the poison of chemo– was like reading my own, which caught me off guard because our cancers are completely different, our treatments like night and day, and yet– she’s so real, raw, and authentic.  So scared of the same things that I am, the things that very often I’m too scared to actually say out loud, afraid that if I give them a voice, they will come true.

She even talks about some of the horrors of being sick that most people would never really admit (like being unable to control your bodily functions).  Her courage makes me feel courageous enough to tell this story that I’ll never forget:  After getting colitis from my first round of treatment three years ago I was driving to my acupuncturists office when I had an accident in my car.  I ran into their office to use the bathroom and came out crying, the receptionist sitting compassionately but confusedly at her desk trying to figure out what had just happened and calling out after me: “Are you OK?” her voice echoing down the hallway.  But I was too ashamed to tell her, too embarrassed to even reschedule the appointment, and I ran out of there and never went back.

Cancer is ugly, and sometimes we want to hide the ugly for fear that others will think that we are ugly (or we simply don’t want to be pitied).

So as I read Geralyn Lucas’s Book “Why I Wore Lipstick to my Mastectomy” (to make her mark, to feel alive, to remind her doctors in the operating room that she is a real person and not just a procedure, that she was here, IS HERE), and as I sit in awe of this amazing woman who refused to wear a wig because she wanted people to see her (and not feel invisible), I get it.  I haven’t lost my hair, but I have lost.  A lot.

And I get it.

It is because of women like Geralyn Lucas that I too feel like I can take off my “wig.” (i.e. be myself.  Not hide.  Show the world my “scars”).

Maybe it’s not my hair that is “releasing,” and I understand from what I’ve read and heard how and why that is an extremely traumatizing thing to happen to a woman.  I don’t know about losing my hair but I have looked different through my treatments.  I have been sick.  I have been so puffy from steroids that I looked like the marshmallow man from Ghostbusters (I make a joke, but in actuality as life-saving as those steroids were, it was very hard to not feel embarrassed about how different my face looked while on the steroids for months.  And going to Vegas when you’re 28 years old to celebrate your best friends bachelorette party while having to stop in the ladies room every hour to put ointment in your eye while who knows what oozes out of it isn’t exactly the “What happens in Vegas Stays in Vegas” story I was hoping for).

I have been sad, and scared, and tired.  I have felt invisible, and I have felt too much in the spotlight.  I have wondered if SHL wishes that my left eye wasn’t branded with a huge red scar on my eyelid or droopy, wondered if he was ever embarrassed by my puffiness or the dark circles under my eyes or annoyed at my fatigue.  Just like she wonders about how her husband honestly and truly feels about her illness.  SHL has never once made me feel less than, but what woman wouldn’t ask the questions, at least to herself?  I have lost more than just my cheekbones; I have lost my ability to not think about death late at night when the rest of the world sleeps.

I have lost my ability to have children.

And as I start treatment again, this time for more tumors than I can count, she says that she is now wearing lipstick for ME.

And in turn, I will wear lipstick for any other woman who sits in the darkness of cancer and even with an army standing behind her, sometimes still feels overwhelmed.  Numb.  Terrified.

And so I shed my thick skin by writing, and I tell the stories that others maybe want to tell but are too afraid to.  I look at the monster under my bed, I cry on my couch, and because of Geralyn Lucas I think:

I will be brave too.  I will show the world my “scars,” my “flaws,” my suffering.  Because in the end, this is me, and I was here.

I AM here.

We are not invisible.  We are not just cancer.

We can handle the truth. We may be the underdogs, but we can win.

xo.