The other 98%

Angelina Jolie is being hailed as a hero. Yes, in many ways she is. She is proactive, self aware and ensuring her family has a long life with her. Good on her and good on the people who might not otherwise do such a thing, will now, thanks to her op ed piece. And (not but), it would be lovely if she and other celebrities who put their paid-for-with-cash-and-fly-in-world-class plastic-surgeons-to-operate-in-their-private-suites showed a little humility and vulnerability. Angie and Guiliana Rancic were both quoted as saying the surgery was much easier than anticipated, they are not defined by their breasts and they were back at work/life/family (even laughing) within days of surgery. Fabulous...for them and for the micro percentage of women who feel the same way. Everyone who knows me knows how much I can't stand the pink ribbon and the rah rah cancer survivor crap, the hot pink tutus, the hugging, the "gifts" cancer gave them...ugh. Yes, Bitter, Table for One. I sit alone. Sometimes for some of us, cancer or cancer proactivity is a gift - it is significant and it is palpable. But what about the rest of us? What about standing up for the remaining 98% who loathe the surgical rape and slaughter we undergo, the hair loss, the pain, the leakages through our clothes while healing, the giant drains strapped to our body to catch lymphatic fluid that seeps out and runs down your stomach, the reconstruction some of us undergo several times to get a match, or have the opportunity robbed from us and we are stuck with fake boobs that fall out, get lost or move around. The stares that waffle between pity and confusion when our boobs are misaligned or we are caught adjusting. What about those of us who will never nurse a baby, or feel sexy in a cocktail dress, or suffer so much scarring we are in constant hyper alert for attractive clothes that still cover us up to our neck, or g-d forbid the bathing suits that we have to endure that need to fit fake boobs or cover all the hack marks without looking Amish? What about those of us who do everything we can and cancer still chases us around our body? What about those of us like me who shadow box cancer everyday no matter how far behind me it is? What about the torture chamber we undergo trying to get our body back, or our sanity, or our sense of femininity? Am I defined by my breasts? Of course not - are you defined by yours? Do you still want them cut off? I love how proactive the celebrities are, I love how their opinion speaks louder than any oncologist or Komen or Avon foundation in putting your health first when it comes to cancer. I just long for some vulnerability. I long for Angelina to remind other women that she is sensitive to the ones who miss feeling normal, or pretty, or are still suffering. How about a shout out to the women who have had cancer rob them of children? Or how their boobs being cut off meant feeling different and changed and deformed but eventually you get there. How about just a nod that "laughing" and "working within four days" of surgery is nearly impossible unless you have a nanny, a cook, a few mansions, a 24 hour top class medical team, a private resort of a hospital and Brad Pitt rubbing your feet and even then, when you stand up and your breasts are gone, cancer or not, if you can laugh and head back to work, you are lying. You die a little inside. I don't care who the fuck you are. You just do.

Playing the Fives

Every cancer patient loves the number 5. After five years our rate of reoccurance or metastasis is greatly reduced - like by nearly 90%. It's a magic number. It's one we wrap our entire treatment around. It's woobie. It just is. So naturally I am excited. I am almost at three and upon talking to the Dr this week about treatment plans (NONE!) and follow ups (every 3-6 months!) and I dropped my excitement on her. Not sure what you mean by 5 years she says...what do you mean? Of course you know - at 5 years, my rate of reoccurance and worry tanks, right? OH, she says, you are speaking about other cancers such as colon and liver and some breast - but not yours. huh? Started getting dizzy after that - most oncologists lose their train of focus following "what the fuck does that mean?" So here it is - I am hormone positive breast cancer - also known as Her2nu+. It affects nearly 20% of breast cancer patients. In laymens' terms, it means cancer on steroids. It uses its own blood supply to survive so it doesn't need me, it doesn't want me, it really just decides what it wants to do and does it. All I could hear realy was no five year celebration. In fact, my rate of reoccurance elevates at 5 years to 10. Why? I stopped listening. I was pulling away from the tunnel vision that started. Of course, she says, she can offer a pet scan. "it can find cancer cells...but to be honest, we don't do anything really different as there is no cure for metastatic breast cancer but at least you will know"...yes, I will know. But do I want to know? That really is the biggest question. So what would I do different? Eat Vegan? Eat Taco Bell? Move - where? Be nicer to my mother, adopt a few cats...seriously, why would I do anything different knowing my forehead has an expiration date on it...or do we find out if I have six months to live - that's always fun. We can do the Make a Wish Foundation trip to Disney and Justin Beiber can sing me a love song by my bed; maybe Channing Tatum can take me to the prom. I am making light of this but hell yes, it was a blow. NO ONE deserves to know they may or may not die at anytime from cancer and please...before I get the "no one really knows" lecture...stop yourself. This is different in a way you can't imagine. A truck can hit me and it's over - no thinking, no pain. But when you have gone to battle for nearly three years, given up everything you can think of including the mother and wife your family needed only to have it taunt you at every corner, every test, every medical visit and then maybe you just die anyway? Yeah - so please... So while I intend to make a bucket list - because let's face it, we should all have one, I haven't decided if knowing is better or not. Every cramp or twitch or burn I feel I do wonder...Most of us think headache, I think brain cancer. Knowing means I won't change anything - my kids will still know I have major crushes on them and my husband will always know he is the first and greatest love of my life but will I tell them more? MORE...if I tell them more, someone's calling the police. I already tell them a lot - like stalker style. I am very angry, I am sad and I am scared to death. I do not want to die. I can't even think about my kids or my husband facing this home and our life without me. It's not what I signed up for and it's not in my plan. Joseph will be fine because he is that kind of man but he will be broken, my older girls need me, my two little ones will barely remember me. So yes, that's a lot of pressure to give cancer. I don't know that I would have fought any differently - I went toe to toe with cancer and feel like I won but like those old scary movies I have talked about - just when you think they are dead, the bathtub comes splashing up and there it is, holding a knife. So I am going to live in 5s myself. 5 will be my new lucky number. If cancer won't give me 5, I will. I'm bringing 5 back - it's a magic number because I say it is and if I say I want a scan because Joseph wants to know or I do, I will do it on the 5th. Just because.

Looking back

A year ago Passover, I was finishing up radiation. Nursing wounds and scarring that refused to leave...it was me...me and the Jews of ancient scripture sharing a similar exodus. A year before that I was facing a showdown with chemo and now, I am alone as my family shares a seder together out of state because cancer has once again, taken control of my life and forced me into submission. I know my son was amazing tonight - I heard he participated beautifully. Ava bought a new dress and Maddie straightened her hair. Livvy has new earrings. It's all so mundane to anyone else. Such an everyday thing you blink past on your way to your next moment but for me, it's a check mark on the laundry list of things I will miss and have missed. Seven surgeries in under three years...I dunno, maybe sitting here crying in the dark alone paints a pretty pathetic picture but I find it somehow ...well yeah it's pathetic. For the most part, I am done. Last surgery, no more treatment and sort of beginning again - kind of timely with spring. Taking this extremely worn down body into the light again and bring it back some peace. Maddie turns 18 this year and Jack starts kindergarten...holy shit who let that happen? It's a pretty amazing feeling to have fought so valiantly and lost so much to be right back where you were in life - no lottery jackpot, no academy award, no nothing...in the end, we fight like hell to keep the life we always had and when we get it back, we realize how much it meant to begin with. I can't remember a lot of their joyful moments and its a searing pain to know this. But I remember Livvy moving my hair that fell to the floor into the shape of a heart. I remember Maddie's face the day I told her I had cancer...I remember Ava blocking the goal post during a game, in the wind and rain, freezing but fighting like a tiger. I remember Jack telling me I was his girl. It's a selective edit that this memory loss does and as much as I hate it, I have to accept it and live out loud, and on paper, and in digital because I need these memories. I don't really have another opportunity to remember anything so I'm just hanging with what I have. I guess my friend Van said it best. These are the days of the endless summer, these are the days, the time is now, there is no past, there’s only future. There’s only here, there’s only now. So with that I am going to bed to cry some more and then wake up tomorrow and wait by the front window like my dog for any sign of my kids pulling up so I can resume my life - Just wanted to share that I am okay but not fine, recovering but not healed and staying sane in between the insanity. I am however eating very well and better everyday thanks to my amazing group of friends who never let me feel sorry for myself for long. Dear Percoset, come to Mama.

Do not color me pink...

So I don't wear pink. The pink ribbon is not for me. I do care about research, and I care about camaraderie and I care about fundraising but the pink ribbon bothers me. Maybe it reminds me of a two year battle I waged...I can either look at it like a purple heart or look at it like a seeping, gaping, pussing wound that won't heal...or I can just look at it for what it is. I am not a banner for survival. I know my mere presence reminds someone to get a mammogram or a hair cut or a new bra. I get it. I am fine with it but when I see the topless pictures of women, scarred and mauled, proudly showing their scars like they are some kind of gold medalist, I can't join the parade. The pink sisters in the tu tus, bald and flat chested, walking arm and arm...good for them. Not for me. Maybe I am still angry. I have a right to be or maybe I am just private in my struggle (so I say from my very public blog). Or maybe victory will never quite be mine as long as cancer holds the key. I can't say what. The compliments wore me out. How beautiful I looked, bald and tired (seriously...wha???). How you can't even notice my Double D's are now Negative A's (oh, okay) and how the 60 extra pounds I gained in two years of steroids is hardly noticeable (thanks for that). Do I sound bitter? Good. I should be. When my fake boobs rise to the top of yet another ill fitting bra, or I toss them altogether in search of a shirt that can cover scars up to my collar bone without looking like a penacostal minister's wife, when my fatigue creeps up and zaps the life out of me at noon, when my son asks me about the day he was born and I can't remember, when I show up at the grocery store and have no idea why I am there, when I put my kids to bed and hate the last two years of their life I have been robbed of...yeah, I can be bitter. It's my party. I guess I just don't want to ever be remembered in pink. I want to be remembered for being bald and sick but alive and present at my son's birthday party. I pulled up the strength and went - he was 3. I want to be thought of for taking my girls shopping for bat mitzvah dresses when I knew I couldn't fit into anything sassy and my head covering kept sliding off in the dressing rooms...I want to be remembered for thinking Joseph, after ten years of togetherness, is the most amazing man I have ever known. To this day, he is the only man I see. I want to be the girl who shoveled snow, showed up at every school function, swim meet and crew tournament...bald, sick, didn't matter. I was there. I was not parading down park avenue in my pink sweatshirt, I was walking kids to school in my jeans. I was not hugging and celebrating having cancer, I was sleeping during the day so when the kids came home, I could be awake enough to enjoy the minutia of math tests and lunch antics. I was crawling away from chemo, sleeping fitfully next to Joseph, keeping him up all night and knowing the next day how tired he was but he never said a word. I was going out once a month to my ABC (Anything But Cancer) dinners with the girls who carried me and knew I needed a margarita, chips and a lot of talk about sex. So don't color me pink. I am not a banner for survival. I am a mom and a wife and a woman who managed the hand I was dealt the best I could. I hate my body, I hate the scars and I hate the damage. I hate the ongoing medical visits, I hate the biopsies and the scans. I hate the panic I get at every doctor visit, the drive past the chemo clinic, the daily medication I take to help me sleep, and reduce hot flashes (but let it be known my short sleeve all weather clothing is kinda cool - saves money on winter clothes). I guess I can be considered grateful - I am grateful for my friends and neighbors and family, and my dad who never gave up on me. I am grateful for my two girls who grew up faster than they needed to, my aunt who took care of me for a week, non stop (and I do mean non stop), giving Joseph respite. The meals, the cards, the love...yes, I am grateful. But I am not pink.

Remembering...

Cancer has stolen a lot from me. Time, energy, breasts...but the most precious thing I have as a mother...the one thing I cannot replace...my memory. They call it Chemo Brain. It's funny to forget why I'm in the kitchen or to buy milk three times in one week because I keep thinking I didn't get it last time but with Ava's birthday coming on Tuesday, I tried to think back about my pregnancy and moments from childbirth and it's a dark and distant recollection. It's like there are holes - long, black holes filled with everything I love in the world and they are sealing up. She is the love of my life...she runs heart first, head last. She embraces every stray animal and child, cries at every movie...cries because the movie MAY be sad, loathes homework and drives me crazy. She loves blueberries and the beach and One Direction. She can get a room brighter than the Aurora Borealis but at night, she sleeps like a cherub, dark and buried under 1000 covers with her blanket and her light up heart pillow. She is on the cusp of a young lady with the zeal and dimple of a toddler and I love every inch of her scattered, adorable, clumsy, beautiful self. As I watch her move through her days I wonder if I will remember these moments. I don't have many memories of her a baby...or a young girl. It's as if the vault of my life has been cracked and stolen. When I look at pictures of my children as babies, I have glimpses of recollection but the things you want to remember...their first steps, their smell, the way their hair would feel as we stroked them to sleep; the first words. I rely on the stories I have told over and over of those moments because the actual moments are gone. It may be the single greatest thing that's ever been taken from me. It's another casualty of cancer...I can hate it and think about how much I hate it but then it wins - again and what it wins is my memory. I will remember the loathing and I can't do that. I would rather remember my children. If there is empty space where my memories should be, I refuse to fill it with cancer. Let that bitch find its own place to live. What I do remember about Ava...she came into the world eight days late. My millenium baby, due December 31, 1999; Nashville, TN. She was so big the doctors wanted to take her out but I knew Ava would find her way, on her own time. She's been that way ever since. In one hour my water broke and her foot was down the birth canal and I was in labor on the freeway at 75mph. Rushed from the curb to labor and delivery, an emergency C section followed and out she came, 9lbs 13 oz. It was during a huge Titans' game in Nashville...the Music City Bowl and just as Ava was coming out I could hear the announcer screaming, "It's a Miracle, It's a Miracle..." the now famous Music City Miracle touchdown that brought the Titans a win, but I had my own. From then its foggy and then it's just dark. I wish I could remember how she felt in my arms...I wish I could see her face in my mind...I wish I could close my eyes and go back so I can have it again. I wish so many things... So Happy Birthday to my precious Ava...I will keep telling you the beauty that is you and I hope you never forget the way you changed my life.

Dear 2013

What a difference a day makes? You should see the nuclear wasteland a few years make...2013 has me very conflicted. It's the year my oldest daughter will turn 18 and begin her senior year in school, my baby boy who would still nurse if I let him is making his pioneer voyage into kindergarten...Ava turns 13, Livvy is reading and speaking spanish...and then...of course, there is Joseph and me. Stronger, wiser, faster...and yet cautious and frankly - pretty fucking tired. I'm down a few boobs, he's down a gall bladder but we filled up a huge vault of humour to carry us onward. He still makes me laugh...and blush...and flutter my eyes. I still make him crazy and wear his socks and choke down my cooking. Every year I make resolutions that I never keep. Every year I have mountains of zeal and excitement about what the new year holds and what my next big decision will be. This year - I am counting on a little less zeal and a little more warm banana bread. We ended the year with 20 1st grade children being shot to death - can I possibly ask for a single thing? Can I bemoan about the extra 20lbs when mothers are burying their children? Can I wrap my arms around my own 1st grader and not feel a dull ache for the missing 20 who will never again be held by arms that are now broken? I'm not a buzz kill...I hope for good things, I want peace and I want to lose the 20lbs but I also want something less. Just some quiet...maybe a nap, a few more movies, a few more trips to the gym, a lot less chaos and a few glasses of wine. I want more of less...I really do. If I conduct my own version of my Year in Review, I feel like gagging. It's like when you order a pizza but Chinese shows up...you don't not like Chinese, you were just ready for pizza. So this year I wasn't ready for you but in the end, my children are under my roof that is currently being paid for, my husband is employed and there is enough food in my fridge to feed a small county... If Cancer gave me anything its the ability to be a little more selfish with my time and my energy. To avoid the people...who well, let's face it...suck the life right out of me. The energy vampires who need my life line to survive... Dear 2013 - you didn't ask but pass me a huge heaping platter of peace and hold the drama. And Cancer, if you show up here again, know in advance, I am packing.

Stings...

I'm quite used to it by now...you know...the stares. The ones that can't figure me out. First it was that I had one boob and another with poor driving skills that would roam all over my chest. Then it was the chemo, where my head covering had people thinking I was either a Nazi skinhead or a Muslim...though Maddie called me Biker bad ass chic. Then it was radiation where I would often and unwittingly pull my shirt from my chest and blow on my torched chest - often caught in a grocery store or post office with stares for days. Now it's my no nonsense approach to no prosthetics, no boobs...not even an A cup...sort of a negative A. I'm wrapped up in bandages because I am sporting three hot looking drains but beyond that, I am as flat as a Texas prairie. At the town Halloween festival this weekend, enjoying glorious weather with my girls and playing with my sister wife Tina I saw it...a man staring at me with a look of disgust on his face I hadn't seen before. Now was his disgust at me? Likely not but did I feel like it was? Yeah - and it knocked me on my ass. It brought me back to total self consciousness, total deformity, totally "that girl". He continued to stare at me - first my chest, then my body, then my face...sort of trying to figure it out and I wrapped my arms across my chest, hiding the division between me and the normal girls. It was then I realized that I am still ashamed of what I have become physically. It's not a bad thing - it's a real thing. I'm embracing all of it but hey - reality bites man. My preschool moms always make me feel beautiful - Robyn reminding me that without my boobs, she can see how pretty my eyes are. Same girl who told me when I had my head covering that I didn't have to tell people I was undergoing chemo, I can just say I'm a pirate. When I told Susanne about possible surgery moving stomach fat up to make new boobs she offered hers as well as mine. Gd I love them all. Joseph who feels the pain of every step with me and wraps my bandages every night, still looking at me like he did the day we were married and yet here I am...covering my chest from a man who means absolutely nothing. But there it is - a reality check for me - I'm still not okay, I'm slowly healing and I still fucking hate cancer and what is has done to me but it's a day at a time. A friend once asked me why I don't look at my chest like a warrior in battle. I don't know...I feel nothing but pain when I see it. It's like a surgical rape - cancer stripped from me much of what made me feel like a woman and we can all say all day long that breasts don't define us, and that's true to some degree...it's still a part of who I am and how I carried myself and fed my children and wore a cocktail dress. So I enter the holidays grateful for what I have and who I have...there is no cancer survivor on the planet with a better back up team than I have and am yet I'm painfully aware the stares still sting. And I hope they don't sting forever. I wish I could magically erase the last two years and yet the clarity cancer has given me about myself and what matters may never have found me. I don't really know yet. I just know the stares sting.