Colorless

So here it is again, Pinktober. I hate it. Truly, truly hate it. I was at the grocery store last week when a squeaky clean, barely-out-of-high school boy asked me if I wanted to "rock the cure" with a donation. Rock the cure? So it's fun now? It's not only pink but it rocks? What the hell is wrong with this? Let me help you. My story isn't new to anyone who knows me but maybe a bit of renewal will help...it will certainly help me. During the first of seven surgeries, the surgeon turned a four hour mastectomy into a nine hour breast removal and lymphnode dig. They weren't easily leaping onto the scalpel so he dug toward my back, searching for kidney bean sized nodes to run pathology on - you know, to see how bad it was for me already giving up a breast. They were hard to find. They were hidden, he said. Perhaps scared to death of being held hostage by cancer. Four weeks of recovery, physical therapy and giant, gaping, chest creases the size of sink holes later, I was starting chemo. Pink? Post surgery - good news...only one node affected. But that one turned me into a septic tank of chemo and radiation for 11 more months. Burned, poisoned, dehydrated, anemic and weak. Are you seeing pink yet? Me neither. Or the third surgery - the one where my expander put in as a breast place holder became so infected, I spent a month on antibiotics fighting staph and MRSA. No expander. No rebuilt breast. How about now? No pink? Or my second mastectomy that was elective but later found to have cancer...surprise, that fire breathing dragon lives. Or the radiation so damaging with third degree burns I lost all options for reconstruction less I want to move muscle from my back to form incongruent hard breasts that may or may not match or hold with fake skin that resembles a can of vomit colored playdough. Hmmm...feel like dancing yet in your pink boa? No? Why not? And yet...I am not myself. Never will be. I tire easily, can't get rid of the extra weight piled on through treatment and steroids, catch every virus, my hair falls out, my skin needs several forms of expensive creams to avoid peeling off my bones, my joints hurt from the bone marrow/white blood cell builders and the breast cancer stay away medicine cocktails. I can't wear V neck shirts, low cut anything and bathing suits from the regular section...old lady high necks for this girl. My fake boobs move around, the no-boob look gets stares and my skin still burns from shower water. I can barely look at it, gd forbid I ever touch it. I have aged ten years and frankly staying grateful and positive is simply exhausting. But I do. So when I am asked to Rock the Cure, buy pink bracelets or water bottles, throw a Save the Tatas bumper magnet on my car, I can't hold the bile down. You want a color that feels like cancer? You can't. It's colorless. It insidiously creeps into your lives and steals the mother from your children, the life out of your eyes and robs the spirit right through your pores. It invades, it burns and it kills. It sits quietly. It moves. It lays low and covers ground faster than you can. It steals the pregnancy from a woman and the wife from a man. You can win but not without tremendous loss. It does not tire...ever. No one escapes unscathed. It's anything but pink. It's the vast wasteland of pain and torture and darkness. There is no cause for joy. There is no pink. Stop fucking dancing. So when I was asked to Rock the Cure, I smiled at this young boy, not aware at all of the depth this colorless serpent is capable of and simply said, "no thank you"...and on my way out, I started to cry.

Happy Rebirthday

So 45 years ago tomorrow I landed here. Kind of surreal because I came in the hard way...from young parents - pregnancy inducted marriage, stationed in Germany, not sure what the hell they were doing and yet, here I was - quite likely as confused and new as they were. I don't have any real words of wisdom - gd help me if I ever hit the lecture circuit but I do have contentment. Maybe I was chasing this my whole life. The wiggling and fidgeting I did through my childhood trying to find that sweet spot between joy and safety. Having Maddie changed my life. It was the first time I was really and truly terrified. Being responsible for this little thing who signed up with me. Surely the gods must be crazy. Giving this human to one as incompetent as me. Then came the rest of my team, slowly, each reformatting me into something better. Patience. Trust. Confidence. With each child I found within myself a paradigm shift. I was raising them but they were reshaping me. I spent several years shaking in my boots. Not sure of what I was doing, never certain I had it right and certainly lacking any cocktail party smack ability to share my successes...I laid low, under the radar and walked through life with a chair and a whip. I trusted no one. A shifty childhood by a mother who had her own demons and a dad who did the best he knew how to do. I found my way...without parental coordinates and a plan I scraped and clawed and sailed and manipulated through the wild and the sane and arrived somewhere between lost and found. And yet after a miserably failed marriage and the scraped knees of learning, I stood before a justice of the peace in Maryland and promised Joseph I would never stop believing in him or in me. I fell backwards into his arms and never looked back. I knew when I was with him I was 100 different women yet I was more myself than I have ever been. And as I stand looking at 45 years here, I see only one thing. Contentment. Not sure really who Riley is but I have his life. It's a warmth, a safety, a drifting peace that no matter really what happens, I am really good. I've waited my entire life for this. I have everything I need (well, I could use a Keurig) and everyone I want to share it with. As my friend Ronni reminded me - I am not waiting for the good scan. Eating off the good plates, sleeping later when I can, celebrating. My birthday was a day I didn't usually love...not sure why - Dr Freud on Line Two but I can say this year it's different. I am taking it with a side of whipped because I know two things: I want to show my kids how to celebrate themselves and I want to show my kids how to celebrate themselves. I want them to feel wanted and cherished and adored...for those who have no idea what I am saying, mazel tov to your parents on a job well done. And mine too. They made me the bad ass I needed to be to kick Cancer's ass. So to my husband, sleep well and eat well, I'm not ready to leave you for at least another 50 years and to my children, I celebrate you today. I am here and content and joyful because of you and how you made me better. So Happy Birthday to me. and Happy Re-birthday to me. I mean come on, anyone can be born, right?

Needed most

Just saw a story about a man who stood by his fiancee after a car accident rendered her severely disabled. Saw so many comments commending him and it really had me captivated. We aren't used to seeing such a thing - not sure why...maybe we are so self serving we forget those commitments we make. Maybe we are so entitled that hitching our wagon to a disabled horse won't work for us or maybe therapists have told us how worthy we are for so long we believe our needs are all that matter. Maybe we just can't hack it. Okay...but then what good are we? I remember being in a very disabling car accident when I was 20 and the sailor boyfriend I had at the time, left...couldn't manage me and crutches but hey, he called and checked on me which was delightful given it took me 20 mins to hobble over to the phone. No loss there I suppose. Maybe instead of asking new couples if they are truly in love with, truly amenable, truly attracted to each other, we should ask if they are willing to change bandages - through thick and thin should be a weight question, not a life question. Great that you are both on the same page with religion but what happens if he loses his legs or she loses her spirit? Can she push a wheelchair? Can he help her with a lifetime of medicine? When Joseph was told I would not only lose both my breasts but would spend two years in significant weight gain, hair loss and rashes covering my body and my mouth I looked to him for the pained face...the one that says "this wasn't in the brochure"...what I got was, well, if they wittle you down to a head, I will buy a bowling bag and carry you around with me. Creepy and romantic all rolled together. But then it happened. The morning I woke up from breast surgery I saw his face - no tears, no shock, no nothing from his eyes that said anything other than how much he missed me. With every pound I gained, he offered to gain with me through wings and beer. With every rash he tended to with awful smelling creams and gels, he told me it's kind of kinky :)...when he would freeze aloe to put over my burns from radiation, he smiled up at me and asked what else he could do. And then when my hair came out, he said he had a thing for bald women...sort of a Star Trek fetish and shaved his own head in solidarity. All 6'4 of him slept slumped over in a chair next to me after each surgery and holding the bucket while I threw up, screaming at a nurse who he felt didn't treat me appropriately (and she didn't - what a bitch) and refusing to leave the PAC U post op, where no family is allowed. Three years, seven surgeries, 11 chemo treatments and five weeks of radiation and he never once considered anything else...well if he did, he never told me. He has coaxed me into being more comfortable with the battlefield that is my chest. Scarred from collarbone to stomach, tattoos dotting the way for radiation, deep gashes and purple scars - he wants so much to hold me to them and I want so much to be anyone else at that moment. Even my recent decision to go without the fake boobs, I said to him "they stare" and he says, "Fuck 'em". So to the newlyweds...can she lose her breasts and her sanity and you will find her deep inside and hang on? Can he lose his mind or his legs and will you stand behind and beside that wheelchair? Can you two still see each other no matter what happens? Because if you can't say fuck 'em when they stare - leave now.

Not yet there

Chemo treatments were warped "Date Nights" for me and Joseph. We played Scrabble, watched a movie, talked, talked, talked. Eight hours under the florescent moon and buzz of nurses and bald people were the perfect setting for us to talk about anything that removed us from where we were. Sometimes we made bucket lists, sometimes we "retired" somewhere on a farm with horses and sometimes we moved to Brooklyn and I became a barista (thank you for giving me that one Joseph). We tried to not talk about the big, giant, bulging, pussing, screaming dragon on my lap, in the form of an IV. A few hours would creep by at a time - sometimes we sat in silence. Sometimes I slept and when he would go to the restroom, I would eat his Doritos: a stronger-than-meth addiction well documented among chemo users. But then there were the days where I made my deals with Gd. Please let me see Maddie graduate. Please let me help Ava into her wedding gown...and in the real dark hours, I would beg. Please let Jack and Livvy remember me. They were only 2 and 3 1/2 and I know, barring you really nutty types, my face would not remain on their radar for long. I knew if I didn't survive this, Livvy would have spotty faded flashbacks of a sick mom and Jack would have no connection to me at all. He would never know how much I adored him...not just loved him, but curled up beside him/burying my face in his neck adored him. Livvy would never know how hard we worked for her. Waging battles through three miscarriages to see the face that would restore my faith in what is good in the world. The long nights on the couch where I would gaze at her - still reeling that she was here. They were beacons for me because they would never know how deeply they lived within me. Maddie is my warrior - I knew she would take care of everyone and would carry on, strong mind, strong face...she is me with better hair. Ava would suffer publicly and wear that grieving heart on her sleeve - her eyes carrying her weight. Both knowing when it came to earth or children, they won my version of a miracle. But Jack and Livvy...they would never know. I knew Jack's first day of Kindergarten would be a big one...a sort of line that meant to me they would see me in their dreams one day. Like most moms, I use my kids' milestones to define mine. Jack would walk into that classroom, anxious, nervous and excited and I wanted to be there. Not just be there...be there. I wanted to remember the feel of his hands squirming in mine. I wanted to watch the day through his eyes. I wanted to skip breaths with him on our way down the hall to the brightly lit room with the purple toothbrush and the giant ABC posters. I wanted to find his desk and carefully put his new blue pencil box away with him. I wanted him to know I stayed up worrying about his ease, picking out a Star Wars lunchbox and combing two Targets for a matching water bottle. I wanted him to know how much he mattered. So here we are. It was emotional...I knew this was what I begged for and it was here and now I want to double down and ask for high school. I want to extend my wish - no expiration. I want to stop gambling on it and just start living it. I want to relax and stop thinking of my life in terms of months or cups of coffee and just live it as though it's like everyone else's. I want to take every second and yet I want to complain about bad weather and poor service. I want to feel grateful and not desperate. I want normal back. But what I have so far is kindergarten. His eyes, his angst, my calm, his retreating to me for comfort...we were there and I am holding this in my heart and my head for future daydreams. I am holding enough for both of us. For today this has to be enough...it's not, but it has to be.

August

August always makes me ancy. It's the end of summer. It's the back to school grind. It's hot and sticky and muggy and the pool is not as exciting as it was two months ago. It's also the three year anniversary of my diagnosis of breast cancer. I can still taste the phone call...the one that I lied to get information on. Joseph was in Afghanistan and I am home with four kids, two of them toddlers. I am already feeling like a one armed bass player (thank you Dad) just managing kids and house and squeezing in, pardon the pun, a mammogram was not my idea of a good time. Paying a sitter $15 an hour so I can place my breast in what feels like a car door slamming on it was an expensive way to spend an afternoon but I'm a safety girl so I went. Shortly after they asked for more film. Thinking whatever, I took my now terrified breasts and went a second round. Within a few short days I got the letter...the one that says you need to come back for an ultrasound. Still oblivious, stupid, incompetent techs; I complied. When the nurse said the radiologist would like to see me, I put my trash tabloid down before finding out what happened with Brangelina and walked in. A very polite Asian man with the single thickest Chinese accent ever spewed out in short detail that he suspects cancer. Um...cancer? Did he just say cancer? I beg for him to repeat it. Repeat it again. Now, write it down. Surely he said something else, I mean come on, accent and all. Cancer he writes. The room is closing in. How can you know this with no biopsy??? I use my flash card medical rights knowledge and demand to know. He shows me the ultrasound which by then looks like a black and grey pizza with too much salt on it. You see the salt? Yes, I do, I say. It shouldn't look like that. No salt at all? No, he says. So, no salt...but there is a lot of salt. We both knew what I meant, but he allowed me to hide behind the innocuous. So, you will remove the salt and test it? Yes. When? Now, we can do a needle biopsy now. To check the salt? Yes. He comes back in and uses an ultrasound guided missile, shaped like a needle and detonates the breast. It felt as though my chest was exploding. Pulls back out and disappears. I am left laying there, alone...me and the salt. When he returns, I can see it in his face. What's next I say. Wait for the official results. In a week. Try and relax. Yeah...I'll be sure and do that. Talking to Joseph about the war and his 15 hour days, shells and bombs even I can hear, holding my breath and my heart; hanging up and crying my eyes out. Going to bed, waking up to four kids with needs...knowing somewhere deep inside me, the salt is the enemy that I can't do a fucking thing about. I wait four days. I called the commander at Walter Reed Breast Center. Sir, my husband is in Afghanistan and is about to go into a mission where I won't hear from him for two weeks (lie). I will only be able to talk tonight (lie) and is it possible I can get my final results now so I can speak to him if needs to come home. Mrs. Smith, I can't really do this on the phone. Please, sir, I am unable to travel there with the kids...okay, he says. I said, wait. Just say yes, do I have cancer? Yes. Room commences to spin. I walk outside. Sun hits my face. Deep into August. I don't cry. I don't move. I don't even breathe. I let the salt transform itself and I wait...the feeling in my stomach, the chest pains, the immobility of my body - The book I am trying to read, fast forwards to the end. It's there now. Awake and alive and in my body, holding me hostage. Yes, the salt is done. From here forward, call me cancer. Thank you, I say to the commander. Wait, he says. I'd like to go over this with you...I mumble the baby is crying and I have go, will call back... And I wrap arms around my legs on the front lawn, bow my head, and for only one time in three years, I let the cancer take hold of me and I repeat cancer in my head for several minutes. Cancer. Cancer. Cancer. And then I go back in, make dinner, and plan my next move. August 2010.

Sleepless in cancer...

You ever notice in those movies where the husband who has lost his wife is doing great, dating, kids are growing and as healthy as wheat toast and then one day, on his way to a church picnic, clamoring open a closet for a red and white checked blanket and boom...the shoebox of wedding pictures fall all over him; like a blanket of past. I think that's my relationship with Cancer only that shoebox straddles my shoulders just waiting for a moment of rest to nose dive into my lap. To be fair, I am around it all the time. As much as I have rid my home of head coverings and short hair, nausea meds and bland foods; I still see pink ribbons and of course, Dr Dennison, my oncologist. Nothing makes your day like a few hours in her waiting room...cancer on line 2, cancer on line 3, radiation patients report to Dawn, tears, holding hands - a moving, live vigil of people waiting to die or begging to live. I go back in my mind sometimes and remember how I survived. Most definitely it was my friends, my dad and Joseph. It's ironic in many ways - some of my closer friends left; had no idea how to talk to me or be with me but some distant friends became the survival committee. My friend and I have a running joke about teaching people what to say and what not to say when you hear a friend has cancer...here, let me help you. If they pray? Offer that but if they don't, back off. Some of us have very complicated relationships with whomever is up there and the pray comments fly like mashed potatoes...ahem...not that it was me or anything. Don't ASK if you can help, just do it. I had so many offers for dinner and seriously...am I really going to call you and asked for a baked chicken? Just tell her what day and bring it. In throw away containers so returning items is the last thing she needs to do. It freezes and her family will eat it. Go for fun - pasta is nice but the girl who made me Asian lettuce wraps is still on my mind. My other friend made an entire southern feast for my husband and I ate half the bread pudding on my ride home. Offer to be there but don't be offended if she doesn't want you at chemo. How about the most devastating and humbling experience of your life spanning several hours...stay back but offer...take whatever excuse she offers to decline. Just get it. A friend of mine brought me nice head coverings...very nice idea and hey, when you are bald you still want something fun or comfortable on your head. My friend knew my favorite flavors from Baskin Robbins and dropped them off on my "off chemo" weeks - I loved every second of those. Every chemo week I would get a hysterical "cancer" card from another friend - made me laugh in a week of total torture. Once a month my girlfriends would meet for dinner - we called it ABC...Anything But Cancer. We talked about sex and food and kids and work and for one night I felt normal. No one said a word when I was pale or swollen or had my head covering sliding off...I just got to be a girl. Delicious. Take the kids! Seriously...pick a plan and ask them when (not if) you can take the kids for the day or night. My amazing friend Margaret took my kids every chemo day so we could come home and I could be sick in an empty house and Joseph got a night to just worry about me and him. Best gift ever. My dear friend, when it was over, picked me up and took me to a spa over night. We ate, sat outside, got massages...I felt so new again when I left. It was so much of what I needed. Talk to her and let her talk to you...this sucks, this is unfair - don't tell her about your Cousin Harriet or your Aunt Martha who died from cancer - or who recovered from Stage 4 by eating organic mung beans...she has read the brochure, she has talked to her doctor, she has googled...tell her she doesn't deserve this and she won't be alone. Remind her often that you love her, send her kids a fruit basket or cookies - think of the spouse, think of the kids...they are suffering too and her healing will depend on their well being. And thank you...thank you to those who never left, who accept I am still a hostage and I am healing slowly and to the ones who couldn't deal with it? Yeah, I am sorry too - for you. It was hard, I know but harder for me. For the next person who needs you, heal yourself and help them.

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.