Like a hoarder, I collect experiences. My brain is cluttered with a snippet of a memory here, a quote there. The Gandhi and Mother Teresa bin is overflowing and I have a temporal lobe chock full of song lyrics.  As I meander through life and come across a new one, I always experience that delighted gasp that I first felt as child coming across a freshly hatched robin’s egg for the first time; enchantment at the uniqueness; wonder at the preciousness of such a delicate thing. I am awash with awe at the inherent depth of something so simple and small. As with the remnants of that soft blue, blue egg, I gently tuck my gatherings away, certain they will eventually have some use for me in the future. Certain they will serve some vital role if not now then later, as I try to make sense of the world. Certain they are gifts that deserve protecting. Perhaps these collections are the evidence of my belief that almost always the answers to life queries (both large and small) are laid before us like a field of daisies. We just have to choose not only to see them, but gather them up one by one, making in the end a whole beautiful and complete bouquet. These are indeed, my tchotchkes of the mental world.

Years ago, long before breast cancer came to my house to visit, I was chatting with “the moms” at the bus stop. My friend (who I have always secretly admired as she is so very brilliant and together) mentioned she wasn’t going to be at the bus next week, explaining that she was having some “minor surgery.”  Later she took me aside and said, “I don’t tell many people this, but I am a breast cancer survivor.  I had it nine years ago.  I am just now going for reconstruction.”  I remember being stunned. I remember feeling uneasy and really unsure about what to say, and I recall that I said something really stupid like “Oh good.” I just didn’t know how to respond to someone who didn’t really want people to know her history. Who had revealed this part of herself perhaps because she had to and not because she wanted to, or perhaps because she had chosen to share a very personal piece of her history with me like a gift.  Mostly I remember not understanding her guardedness but respecting it.  In the end I think I mentally stored the experience away in an “important yet unfinished business” drawer in my head.

Several years after that, still before cancer had my address punched in on the GPS, I was sitting in my office seeing a client in therapy. This client was a young woman who had been sexually assaulted in her home one night in the small beach town where she now lived.  She hadn’t reported the assault to law enforcement or really to anyone but me. In working through this trauma, we inevitably reached the part where I had to ask her about her reluctance and perhaps what I (wrongly) speculated was fear to prosecute.  She hesitated and then simply and eloquently said, “Lauren, you know, I grew up in a small town not unlike the one where I live now. When I was a little girl, there was a woman who lived in our town who was raped.  It was in the paper and everyone knew about it.  And after that she was never, ‘Mrs. Such and Such’ or ‘So and So’s Mom,’ ever again; she was always ‘The Woman Who Was Raped.’”  She continued, “Even now you can pass her house and someone will say ‘that’s where the woman who was raped lives.’” She ended quite simply, “I just didn’t want that to become my identity; to forever be known too, as the woman who was raped.”

At that moment I literally scurried across my brain from drawer 1998 to drawer 2002, pulled the two pieces, put them together and they fit…perfectly. I had the end of the story, the moral of the story; the finish to the unfinished business. I finally understood that my friend didn’t want breast cancer to become her identity as much as my client didn’t want rape to become her identity.Each woman understood the social repercussions of being that woman, the woman who had breast cancer, the woman who was raped.   Each understood how that label changed how people saw her; how it couldn’t help but change how people saw her.  People would always see the woman that was raped as a victim, with all the dark and sad innuendo and hushed tones and rough edges that partner with rape. She would become a woman who something happened to instead of a woman who made her life happen. And for my friend also, it was about her identity, and how breast cancer changed who she was and how people “saw” her. Though with my friend, at least for me, the sentence wasn’t completed. I wasn’t totally finished with “getting” the breast cancer identity and what it meant or felt like to have that label; I was still unclear about the social innuendo that coexists with breast cancer.

Until I got breast cancer, and cancer became my identity. That is when I reached the finish to the unfinished business.

My first blog explored the ambiguous losses that exist within cancer diagnosis and set the framework for understanding that grief and loss of so many things are profound in cancer. Herein lies the first loss, and in my mind, the most pervasive loss in cancer; the loss of your identity. You stop being you and suddenly become the woman with breast cancer; you become, “The Woman in the Pink Dress.” The world responds differently to you when you are wearing the pink dress, and even years later, when you tell people that it’s hanging in your closet.

In the flash of a biopsy report, your identity as healthy Lauren becomes cancer patient Lauren.  Instantly your former ways of interacting with the world are shifted to the dark side; and the easy and carefree nature that defined your dynamic with friends, co workers and neighbors…of interacting with your entire world, evaporates. Cancer has roughly pushed you out of the way, and stepped into your shoes, and it becomes your face. Your friends, noting the brutal-ness of that push, handle you with kid gloves now. “Cancer” is what people think when they see you now. In a flash your life script is taken away and instead you must follow the script that society has written for cancer patients.

In a flash, you are well on Dec. 11th and sick, very sick on Dec. 12th. In a flash you walk in for a mammogram a mom, and see a friend in the waiting room who asks happily about your family. You walk out of the mammogram a mom with cancer and now every time you see that friend, she sadly asks you not about your family but about how cancer is affecting your family.  

In a flash, you open your front door and there on your porch, tidily wrapped up with a pink ribbon, is a dress box.

In a flash this really really big thing has become your new identity; cancer steals your old identity. What you see in the mirror changes and what people reflect back at you is distorted. It’s like waking up in another world where you have a different name, a different face and the colors are off…you aren’t in Kansas anymore and your slippers aren’t ruby, but pink.

In the early days after diagnosis, when I was still working out the fact that I was sick on paper but not in my head, being treated differently just didn’t match up; and the dissonance was dizzy-ing. It is just plain out of sync for your mind to know this “thing” is inside you and the only evidence of it outwardly at least at this early stage, is well, your dress.  You start to fully grasp and fear that the stealth nature of this beast lies not only in its ability to kill you, but in its ability to kill you.

In a flash, you look down and you are suddenly wearing “The Pink Dress” and all you can think is “But I don’t even look good in pink!” 

It felt awkward and abrupt to me, like the day I went to the hospital for a scheduled C-section and was told to put on a gown and get in hospital bed.  That simple action and I was instantly a patient instead of the chick who had packed her bag and driven to the hospital that morning after making breakfast for a 4 year old and walking the dog.  Bam, in the flash of a pathology report, your status shifts, that quickly. You slip on the pink dress and slide into bed and just like that, you are a patient.

Like it or not, once the news is out that you have breast cancer, the proverbial pink dye has been cast. People will come at you with their own sets of assumptions about the disease and how you should look and be acting in the pink dress and about what you need in the pink dress.  That you like to eat casseroles in your pink dress. That they have to use hushed tones and make a sad face when you are in your pink dress. That you should nap in the pink dress. That you can’t think straight in your pink dress. That you can’t drive yourself to chemo or radiation in the pink dress. That you can’t work in the pink dress. That you don’t like to talk about your pink dress or how it looks and feels to wear the pink dress.  That you aren’t in control of your emotions and are in denial if you are wearing the pink dress.  And my favorite, that you should share all the measurements of the dress, bust measurements before and after, with everyone. They all want to know “the stage” you will wear the dress on, just so they have an idea of how long the show may be and perhaps how it will end. And of course, they assume that you just love love love to accessorize the pink dress with pink scarves and pink teddy bears and pink bracelets and pink comforters and pink ribbons galore.

And there is grief. And there is anger. And there is defiance. And you feel robbed.  And you feel raped.

And you hate cancer for the malignant way it stole your health and identity; for how stealth it was in stealing your life so quickly. And you hate cancer for changing how your friends treat you. And you hate how it has defined you. And you freaking hate pink.

Disclaimer

Now before I go further I need to state something very clearly.  I am and remain eternally grateful for all the things people did for and my family. People were thoughtful and kind and thought of a million kind things to do for me and give to me, pink things included. People were fantastic at guessing what I needed and when, and what I didn’t need. But this blog is about us cancer girls kvetching a little without repercussions, and discussing what it’s like on this side of the fence, standing in pink grass in our pink dress.   At times we just want to stomp our little pink shoes and it seems selfish to those on the outside, but sorry, sometimes it is hard to feel grateful when we are wearing an itchy wig. Sometimes we not only want to rip off the pink dress we want to flush it and all its accessories down the toilet along with our daily vomit. So If it’s gonna hurt your feelings as a support person to hear kvetching about some things, here I suggest you read no further.  Don’t judge until you have walked a mile or through chemo in our pink shoes….this blog an emotional purge and while it is unpleasant to those outside but boy do we feel better after it’s done. Okay, back to the dress show.

Maybe it’s because I’m an intensely private person.  Maybe it’s because I’m stubborn and I don’t take well to people telling me how I should act, dress or behave, especially if the reason is because it’s how everyone else does it or it’s always been done. Maybe it’s because I wanted to grieve first in private and figure it all out in my head first. Maybe it’s because I never have made a good victim and martyr; while I’m more than happy to have a big ole pity party for myself, the pity of others, and the accolades of my bravery made my skin crawl.

Maybe I just didn’t want to have cancer. I really fought the pink dress at first, like when you were four and your mom struggled to slip an itchy Sunday dress over your head and you fought back hard, twisting and pulling to keep it off of you. That is the struggle that is diagnosis.

Maybe I simply needed to try on the pink dress first in the privacy of a dressing room before I had to step onto a stage wearing it in a spotlight. Maybe I wanted to pick my own style of a pink dress without people insisting how it should fit and that it should have a matching pink scarf. Maybe I hated the power of the pink dress, seeing only the negative ways it changed my life. It was really uncomfortable, all new out of the box itchy and starchy, and I still considered in those early days after diagnosis, that the dress box was perhaps, dropped at the wrong house by mistake.

It should be up to you to create how you put yourself out there and frame the diagnosis. You want to yell, “This is my news, my tumor type, my surgery decision, my breasts and my story.”  But when I took the lid off the dress box, the genie was out of the bottle. Just when I was just getting into reading the new story of my life, it became everyone one else’s story. Everyone wanted to tailor the dress to fit someone else and make it too tight for me. They came at me with their scripts and conclusions and often unsolicited contextual details about the disease…all of which I wasn’t so sure really fit me.  I just didn’t know what to do with the “jaw drops,” the sad looks on people’s faces, and constant hushed whispering of, “How are you really doing…no really?” It bothered me that no one asked about anything else in my life anymore, like my kids or work, other than in how it related to the cancer; all they wanted to talk about was the pink dress. It bothered me that I couldn’t think about anything in my life without being in relation to the cancer; that I couldn’t even take the pink dress off to sleep and its newness and scratchiness kept me awake at night.

You are grieving the loss of your definition as a person. You are grieving how it was taken, you are grieving that people have forgotten so quickly who you were, and that they let you go without a fight.

When you start to “show” when you are pregnant; you suddenly belong to the world. You are fair game to be approached by all and touched without boundaries by strangers and friends alike; it’s all about babies and touching your belly and labor and baby name stories. With cancer the same switch is flipped, you are instantly public domain, but in a less joyous way.  Chemo and hair loss seem to be billboards that flash, “Come here and ask me if I have cancer and then by all means, feel free to tell me the cancer story of your Aunt Sally.”

You and your family potentially become forever defined as a sad story. I adore my dad. He’s reading this, DAD I ADORE YOU. This man kept my head above water in the dark years of my life and has laughed with me in the good years.  He’s a great story teller, but…. he has this habit of providing a back-story to each person in his story.  He likes to set the stage. He can’t just call me and say, “Hey Joe opened a new restaurant.”  He has to go, “My buddy Joe you know who was paralyzed in that car accident, whose wife was an alcoholic and had skin cancer opened a new restaurant.”  It’s usually a drama back-story, bless his heart.  A few years ago, I was trying to finagle getting my kid into another school.  My dad asked if I had told the admissions office about, “The cancer and the divorce”…and I was quite frankly like, “Why would I do that?”  And then I got it. Sadness, cancer and hard times had become my back story, likely not just to him but to everyone in our lives.  And I got mad. Really mad.  Furious as a matter of fact.  And I said, “Dad, we are not a hard luck story, and I do not want that to be our identity in my community nor in your community.”

And that’s when I fully, I mean really fully got what it felt like to be “the woman who was raped.” By cancer.

I digress, but years ago when my mom died we three (adult) kids were at my dad’s house preparing for the funeral. We were deeply in grief; that immobilizing raw grief where you can’t even talk.  People starting coming to the front door with deli trays and lasagnas.  And then they kept coming. Soon the fridge was stacked with deli tray upon deli tray; we had no place to put them. The next time the doorbell rang we started giggling and said, “Deli tray!”  And it was all over then. It was all we could do to hold it together while thanking the person and taking the tray. And then we erupted into a fit of giggles.  And it got worse and worse as the day wore on to the point my dad took us off front door duty.

When I got diagnosed there was a room in our house that became fondly known as “The Pink Room.”  It housed all things pink. Pink blankets and pink jewelry, pink books and pink pashminas, pink t-shirts, pink angels and pink teddy bears and festive pink boas. Pink ball caps and pink ribbons galore. My kids and I would giggle as I opened something new that was pink and yell, “Pink room!” (Re-read the disclaimer here if you are getting irritated)

Pink was the new deli tray.  

See there are so many things in your regular old life cancer tries to steal from your identity. There are many beliefs that co-exist regarding people with cancer and what we should do for them.  And while all intent is kind, my point is that sometimes, it is overwhelming. It amplifies and reminds us how we must be changed; that there is this sinister thing inside us. Right or wrong, we do feel ungrateful and irritated at times. The anger on my part came from the struggle I had with the pink dress stealing away my old life and society saying what I could and couldn’t do in the dress. The loss of control; you grieve the loss of control. 

The overwhelming changes do reach a tipping point, like it did with us and the deli trays, and at that point you have to laugh. Let go or be dragged… in your pink dress. Even if people tell you it’s not appropriate to laugh and erupt in a fit of giggles in the pink dress…laugh…and lighten up girl. Laughter is what cuts the ropes that bind our hands and arms, the ropes that have kept us from embracing the hard stuff. And too, some stuff can be stored away in a pink room until you are ready to embrace it. I have a plaque in my kitchen that says, “The crisis of today is the joke of tomorrow.”  Indeed.

So, here is my list of fun facts/myths/urban legends that I learned about wearing the Pink Dress:

  1. Being the woman in the pink dress immediately makes you the dumping ground for everyone else’s horrific cancer stories which always end with Aunt Sally dying from breast cancer…  in the 80’s mind you….LONG before almost all of us now survive breast cancer.
  2. Wearing the pink dress makes people assume you want to meet and talk to other women who are currently wearing or who have worn the pink dress. And that those women will naturally want to talk to you.  I will never forget sitting in my office one day, working on a report and the door pops open.  And my boss says, “Hey, Jeanne is here for a meeting, did you know she was a breast cancer survivor?”  I imagined in my wishful, naughty little head the following conversation: Me:  “Well why are you telling me this in the middle of my work?” Him: “Well because you had breast cancer of course,” Me: “And that means we would like to talk because we quite naturally would want to chat chemo, exchange radiation stats and compare prostheses?” Him: “Well… Yeah.”  Me: “Oh by all means, let me go and talk to her about cancer in the middle of me working on this report. Oh and Mr. Boss, by the way didn’t you mention that you had hemorrhoid surgery once?” Him: “Well yes I did, why?” Me:  “Well my Uncle is in town and he had them too, I thought you guys might want to grab a beer.” I dunno I know I sound mean but some days that was just how I felt, like I had become the poster child for breast cancer.
  3. When you wearing the pink dress your breasts are grossly out of proportion so that others can easily figure out the “bad” breast.  You know this as their eyes will immediately drop to your breasts and move rapidly back and forth to measure them up visually.  This is more pronounced with men.  I don’t know about you, but rarely do I go out in something that one breast looks gigantic and the other shriveled.  I have now become more proactive when I see the eye drop, and helpfully announce, “This one” while pointing to my left breast.
  4. Honey, you really shouldn’t/can’t work in the pink dress bless your heart. This is because A) you should lie in bed all day and  B) your brain doesn’t work on chemo…trying to work just means you are in denial about how sick you. You can’t get well with work stress.  You can’t exercise, go to the gym or mow the lawn in the pink dress. That’s just pathetic. People think you are in denial/crazy when you do these things in the dress.
  5. Your husband/significant other/partner will be adoring and appropriate and endlessly supportive while you have the dress on, and will cover every household task and whim of yours. (this is a topic of another blog later.) Suffice it to say that often, this is sooo not the case; spouses get tired, spouses are dealing with their own grief and anger and sometimes spouses are just plain assholes. (It takes a village…don’t ever forget that.)
  6. You can’t have sex in the pink dress because well duh…you have to have hair and both breasts to have sex.
  7. You should “let it all out and quit holding back and being strong for the kids” in the pink dress. So this means you can’t laugh and have a good time in the pink dress, or have a Cosmopolitan, even if it jives with the pink thing you have going on and all.
  8. You will lose massive amounts of weight/throw up frequently while wearing the pink dress. Conversely, you love to eat casseroles in the pink dress. Personally I have always loved the look of pink and chocolate together; this combo, coupled with about a hundred steroids, busted the “lose weight” theory to pieces.
  9. You should curtsy politely in the pink dress and be grateful when offered advice about the benefits of acai berry in curing cancer and theories of how guilt from your childhood gave you cancer. And when asked if wearing pink dresses is a family tradition, you should politely share your genealogy. This myth is really not about other people blaming/faulting you for getting cancer, but assuring themselves that they are never going to have to wear the pink dress, cause darn it, they didn’t drink pasteurized milk with hormones as a child.
  10. And lest we forget, the fun fact that there are perks to wearing the dress. There is this really cute book out there called, Crazy Sexy Cancer (http://www.crazysexycancer.com/ )where she talks about the Cancer Card like a credit card, and using how using the card sometimes works but that sometimes get “denied.” At the same time I get mad at my dad for it being my back story, (because cancer makes us appear to have multiple personalities) I have showcased, okay literally sashayed and twirled round and round in the pink dress to explain/excuse a particularly bad behavior on the part of one of my kids, or myself. At times, I have washed and ironed the dress to make it shine, to see if I could finagle down the price on some lizard skin boots on eBay and well…Taylor Swift tickets too. I particularly like the fact that I am allowed to spend more than normal on luxuries in the pink dress and don’t have to rationalize the boots. And sometimes, the pink dress just invites gifts all by itself. Once I took my bandana’d head to the boardwalk with my kids, and a man just gave my daughter this giant stuffed giraffe. The best perk is that you can lay in bed all day in the pink dress and your lizard skin boots, and no one cares. You are never “lazy” and you have an endless supply of casseroles and deli trays to eat in bed. And lastly, no waxing, no shaving, for as long as chemo lasts….even though you really shouldn’t be going out to dinner in the pink dress and can’t swim in it anyway.

These fun facts taken together with my hair growing back in, made me become a breast cancer survivor on a need to know basis. 

I remember listening to an interview one day where Kelly Rowland from the band Destiny’s Child (it’s okay I had to look it up too) was talking with giddy excitement about a recent experience she had while flying.  She had found herself chatting with this guy in the seat next to her on the plane who obviously had no idea who she was; that she was famous. He asked what she did for a living and she just said, “Well I sing.”  He chatted along about his job and such and got to where he asked if she’d like to go do something with he and his girlfriend and their friends when the plane landed.  When they deplaned, there stood his slack jawed girlfriend (who recognized her) when he introduced her to his new friend “Kelly.”  Thinking about this interview, I realize what she was loving about this moment was the novelty of anonymity and the disconnect from her fame, from something that defined her.  The ability to be liked and invited somewhere and know it was about her merits as a new friend rather than her history. To just be Kelly.

After five years, I know her glee of anonymity. I like it when I meet new people and they like me or dislike me on my merits and not with that wild card factored in. After five years, I like that can pick and choose who knows my history and who doesn’t. To just be Lauren. And to be honest, I most like that sometimes when I am telling someone about myself, that the pink dress part really comes as an afterthought… if at all.   I recently started dating someone who lives several states away.  This has opened the opportunity for me to be anonymous.  No one there knows my history.  I kinda like it.  It’s like being reborn.   This part of my story is safe with him and he respects it, just I as did with my friend all those years ago even though he may, or may not get my need to guard it.  And it appears he never read “the rules” about how to treat someone with cancer, and I like that.

Maybe the identity fades. Maybe we just get over it.  Maybe we decide the pink dress isn’t so bad after all, kinda like a new pair of jeans that finally gets broken in and becomes a second skin. Maybe the irony of the thing is that it is only when we are newly wearing the pink dress that we don’t want people to say,  “Oh, I see you are wearing a pink dress.” We don’t like the way our bald heads call attention to the dress and not our shoes.  Maybe the pinkness loses its ability to overshadow us, and its perceived power over us diminishes to a whiter shade of pink. Maybe, just maybe we make friends with pink and (imagine that) decide we look good in pink.  

Some of us just outgrow the pink dress and are content to leave it for someone else to wear; coming to understand that our time in the pink dress was an honor and that giving it away doesn’t make it less ours.  Some of us will always wear it daily and be happy with that.  Some of us will put the pink dress in the back of our closet and pull it out to wear only for special occasions, like Race for the Cure, or to get sold out tickets to John Mayer . Some of us will, on a nostalgic and quiet day, when the kids are at school and we are in the privacy of our own closet, try the pink dress on again. We will glance in the mirror and experience a pleasant surprise; we see something or someone new reflected back at us; and perhaps a feature to the dress we had never noticed. Some of us will realize that we have outgrown the dress; but we still like the comfort of it hanging in our closet back there, behind the winter coats, because we earned it the hard way.  

And some of us will readily just drop the pink dress in the donation box, right after treatment along with our wigs and bandanas that we don’t need any longer. Happy to be done with it, we dust our hands off, get into our car and drive away.

No matter what you do with the dress, you realize that its greatest power was not in how it stole who you were, but how it made you who you are.

After five years, you can decide the rest; the rest, as the song says… is still unwritten.

 

“Unwritten”  ~ Natasha Bedingfield

I am unwritten, can’t read my mind, I’m undefined
I’m just beginning, the pen’s in my hand, ending unplanned

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

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