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Thursday, December 5, 2013

The touch

Getting her out took quite a bit of work. Lots of pushing, long hours of panting and waiting and finally a few suctions and a vacuum and here she came...right on time, if right on time was eight days late and 26 hours of traveling. They wanted to rush but I knew she'd get here;on her time. I was so awestruck...so truly speechless at the idea that this little person would now be my responsibility and keeping her alive was at the top of my list...but it's a really long list. I watched her cry as they were putting her through the newborn grind. I didn't know what else to do. Then the nurse said, "You can talk to her". Talk to her? What do you mean talk to her? After a few paralyzing attempts at conversation I reached over to her, laid my hand on her stomach and just said, "Madelyn"...the name reaching my tongue for the first time in a greeting. It sounded foreign to me as I tried it again...Madelyn. Still like cold marbles in my mouth I worked up a third time when she stopped...looked around. Confused and thinking she'd been stuck the wrong way with an IV needle I heard the nurse say, "she hears you, she recognizes your voice". Wide eyed and bewildered that I can already provide this tiny person with only my touch, I made a deal with myself that bringing calm and comfort to her world would be my only mission. So 18 years later, I can't help wondering...how did I do? Last night at Senior Parent night at Maddie's school there was white noise about college application processes, prom, how to walk in your cap and gown but really what I was hearing were my long years of hope and self doubt. 18 years flying through my mind like a mini montage of her life. But it was more than that really...yes, there were the first times, the birthday parties, the bikes and dances and parent-teacher conferences. But there is just more. It's not even her really that grew up so deeply, it's me. It's how much she gave me disguised as my gifts to her. I cut my teeth on her. I evolved with every moment, every milestone you could hear the ice breaking about the mold I had myself in. There was so much growing that it was often hard to tell where she ended and I began. It's how I went from a paranoid, incompetent 20-something to a strong and confident mom of four. It's not what I taught her it's what I learned from her. It's how she smiled when I walked into the room...as if my waking up was all that she needed...I became the one who got up early to let the sun in. I don't remember being that to anyone. She reaches for my hand. She seeks me for truth and for comfort and for protection. She redefined me in ways she can never imagine. She, at only a young toddler, taught me I am worthy of her. And eventually, I came to believe her. When I think about the hours and hours of books I read on how to unhook the clasp of my own mother and become to her what I so desperately wanted, I learned along the way, it can't be taught. Maybe it's just developed...maybe it just grows that way. Maybe you just turn around at a cocktail party and realize you finally got it. I made so many mistakes with her...not trusting myself to let her feel rejection and hurt and exclusion. The pain of her pain was too unbearable to me. Good mothers should never let their children feel anything but happiness, said, every new mother armed with only her baggage. I should have let her develop her Wonder Woman powers and her muscles, her sense - let her get lost and find her way back. I didn't trust her to trust herself. How could I? I didn't know what trust really was. Let her experience risk? And loss? How??? But yet, it happened anyway. Eventually. And as she found her way, I found mine. We met in the middle - each sporting battle scars and flesh wounds but we. were. empowered. She isn't the daughter of my dreams...my dreams were so skewed and warped from years of erratic chaos. But as I look at her now; her strong work ethic, her confidence, her deep and unyielding compassion, her smile...even her trepidation towards unchartered waters I see magic. The real magic. The one that after watching it you wonder how they did that - and you leave feeling something. That's my Maddie. Paving her own road, wandering but not lost...determined but unsure, confident but scared to death. But you know you have experienced her by how you feel. All the mistakes I made are mine. I own them and hope she isn't on Oprah one day sharing about them but if she does, I will take the hits because I'm finally okay with me. But she's almost ready to go and despite the broken glass I feel in my mouth when it comes to her leaving, I trust her. I trust her to fall miserably down and get back up. And I trust her to win with grace. I trust her to walk with honor and look back and wink. I trust her with everything. And as I reach over to her when she leaves home I will bring with that touch the memory of a trembling mother bringing comfort to her baby, and how the baby stopped and looked for her, and how the mother touched her again...and the baby was better knowing she was there. And how they grew up together and healed each other and how it's almost time for the baby to show the world what she is made of. And the mother is happy.

Wednesday, October 23, 2013

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.

Monday, September 30, 2013

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?

Friday, September 6, 2013

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.

Friday, August 30, 2013

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.

Saturday, July 27, 2013

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.

Tuesday, June 25, 2013

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.

Sunday, May 19, 2013

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.

Tuesday, April 16, 2013

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.

Monday, March 25, 2013

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.

Wednesday, February 20, 2013

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.

Friday, January 4, 2013

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.