Monday, September 22, 2014
Well it's time. It's done. We had it great but...it's really just time to see other people. This blog has been a source of sanity for me during the darkest moments of my life. I am grateful for the ability to live out loud and explore some parts of my brain that really should just be left for science. I used it to escape, to cope, to share and to motivate myself to get out of the darkness...but I'm out and it's all sparkly and shiny again. When I look back over my life - yeah it's going in the book, I don't really see survival. I don't want my legacy to be simply survival. I lived strong and well and endured some bullshit like any of us. Cancer? Well hell. I am not a breast cancer "survivor" - just the term gives me chest pains; pardon the pun. When I think of surviving, I think of grabbing a branch over a raging river and clinging for life with a helicopter flying overhead and young Navy Seals dropping in on a line and the news circling near by, storms coming in...but I digress. I didn't cling to anything. I endured, I scrapped, I fought, I begged and reasoned and sobbed and in the end, I burned it, poisoned it and cut it out. And if it comes back, I will beat it again. There was no dangling over the river, I went right through the middle. Cancer survived me and that's my legacy. I am considerably different than I was before. You will never hear me say Cancer was a gift but it was a game changer. There is really nothing I can't do. Once you have delivered babies you aren't bringing home, there really isn't anything else - not even Cancer that can top that so maybe I started with my gloves on. Nowadays, I'm a little less sensitive, maybe some more emotional scar tissue, maybe I'm a little less patient for bullshit and a lot more capable of letting the toxicity go...I watched my older girls grow up faster than they should have but I fell more in love with my husband than I thought I ever could. I still mourn the breasts but find the ability to work out without a bra liberating. I put a hat on my head and break out into a PTSD cold sweat but love my softer red hair that grew back in. I hate fitting into bathing suits with high necks but love being healthy enough to run on the beach. I hate feeling unsexy to my husband but love feeling more loved than the day I married him. I hate that Cancer makes my little girl cry but love that she has me to hold. I hate the memories of being sick but I love the sisters I gained who put their own lives second to help a busy mom cope with the hardest three years of her life...at the time, they barely knew me; now, they are my best friends. The pain list is long but the gain list is longer. Guess what Cancer? I beat you again. So thank you...thank you for reading, for letting me grieve and grow and live. Thank you for the posts that I read and reread and reread. It's been four years and I am done. I'm not living post Cancer, I'm living without Cancer and it's time to do that.
Friday, April 18, 2014
Listening to a friend crumble through the bottomless spiral of miscarriage while another honors the anniversary of hers brings me back. Like a haunted viewfinder I can look backward but take the lenses away when it gets too hard. It was several years ago. So crippling I can't remember the day or the year...only the season. It was gray. Joseph and I and my bulging belly shuffled to Georgetown Hospital for the glorious first glimpse of our baby...still on the fence if we want to know if she's an Abby or he's an Aaron. Giggling in the dressing room with another pregnant mom, taking guesses at how each was showing what we were having. I just hit the 20 week mark and was hoping baby was going to give us the money shot because I knew we only had one chance. His/her health was never even on my radar. Two perfect pregnancies gives you that wide, comfortable bliss which sadly became a launching pad into darkness with no compass. Positioned on the table with my excited husband holding my hand the tech begins what quickly became the worst moment of my life. Within minutes she asked to leave the room but will be right back. I look to Joseph and he smiles completely unaware that this may or may not be a bad sign. I noticed the small things. The way her face dropped when she looked at our baby. The way she moved quickly typing over the leisurely pace she did when she began. The way she moved the monitor away from us before leaving the room. And finally...the 20 mins she stayed gone. My broken smile was no match for Joseph who was now complaining about the length of time and wanting to see the baby. She returned with a doctor. The grim reaper in a lab coat who could only mutter the words, "I am sorry but there is no heartbeat". Every word that followed was a blurr. I heard labor and delivery, no option for c section, hospital, how fast...it was all just a moving train with lights and sounds I couldn't recognize. I felt numb and struck all at the same time. I felt for the first time, at that moment, I would not survive this. At least not wholly. Two days and 37 hours of labor later I delivered a perfect baby. I refused the sex and refused to look at it. I prearranged with the nurse to be medicated the second the baby arrived so I can numb myself into oblivion which became my deepest regret that lay upon me today. I left Joseph. He was there with me, every moment as I labored and cried and fought the passing of a baby I would not take home. He saw the arrival and as the baby was rushed out, so was I leaving him to pick up the parts of both of our broken souls. I was too weak and I failed him. The emotional pain was so wretched my brain couldn't process it. It's when I saw the cat. Telling Joseph about the cat had his attention. Every few mins I saw a cat leap through Labor and Delivery - so lucid was I that I knew it didn't make sense and yet, the cat was there. I kept hearing him and seeing him. I knew it didn't make sense and thought maybe it was the medication but I wasn't totally sure. The cat was so real. Asking the nurse about it was sure to get me a psych eval but I did it anyway...visions are normal on morphine but the cat was a new one on her. As Joseph held my hand I hear him mewing...there he is, I yell. Joseph, can't you hear that? I can hear him so loudly now! His eyes fill with tears as he chokes on his words...that's a baby, he said. Honey, it's a baby. I felt instantly like I was falling, falling through the last few days, all at once - This is Your Life, my hell...and I hit the ground. There was no cat. Only the trauma so devastating not even I could endure it. And my Joseph, holding all of us close and suffering as deeply as I was never let me feel that I left him. But I did and he held me until I came back. It took several months for me to hear he was a boy. A perfect, healthy boy. We tried again once we got the green light to move forward and suffered through an equally evil act pf universal retribution when we lost a baby girl only one week later than our son. More destabilizing but summoning up the numb from before, we held our breath and moved...again through the dark and murky. Questioning why, yelling at Gd, angry, devastated, lost, broken, spiralling, falling, waking up and dying all over again... Test results revealed another perfect baby who for someone unknown reason, decided to leave; again. Weak and empty I want to stop. Joseph says when the pain of losing them becomes greater than never meeting them, he stops but he will do whatever I need. I wait. I see them in my dreams. I feel them calling me. I am sure I am losing my mind. I knew the girl wanted in first. I broke and made my deals with Gd. I hated him but frankly I needed him. I wait, I second guess, more deals, more pain. Then the calm comes. The signal to me it's time. We try again and nine anxious months later, we meet Livvy. I've heard it said that that worst nine months of a woman's life is the pregnancy after a miscarriage. I can attest. 19 months later, our little boy came...back? Jack Aaron Isaac - arrived safely and happily. Whether they changed their mind and came back I will never know...I like to think they did. But I also know there is a hole in my memory where they once lived. I never saw them, never held them, never knew them...it's how I grieved them. Sight unseen. When I look at them now I feel sure we have met before. I feel secure they are where they belong but an oddly familiar feeling of having been with them. Maybe I am still losing my mind or maybe it's the cat. I still can barely think about these dark moments but I try to so I can some how honor them. I survived. Because that's what I do.
Thursday, February 13, 2014
She's losing her spirit. My Ava. Suddenly paralyzed. Through a bizarre and seemingly endless illness, the results are simply temporary paralysis. We are asked to have patience. Really, I am asked, as a mother, to recreate the pattern of the stars. Sitting on hospital tile together we argue. Fight, Ava. I can't, she sobs. I know she can. She is mine. That DNA didn't float through our bodies, it rammed into hers from mine during our first knock out together. I was two weeks late and she was finally coming. Contractions were raging, I was losing consciousness trying to get to the hospital. I could barely breathe when we arrived. Rushed right into OR the doctors saw a foot lodged into the birth canal and no audible heart beat. My own pulse growing weak we became each other for those moments. I remember talking to her. If I was going to die giving birth to her, I was going to become a permanence in her self conscious. I was going to leave footprints and I was going to tell her not just that I love her but that I would never leave her and how we will fight together. At that place, we shared a body but not a spirit. Hers was her own but I was invading that sacred place and I was telling her to fight like hell. I saw her coming up from my stomach, OR light shining behind her in peculiarly lit angelic image. She was here. And if I could make her fight, I would show up too. That fight never left her eyes. That spirit has never left her smile. But I see it moving further away. I see it watering down. I see it begging for mercy. We are back in the OR in my mind. I am washing her hair in the cold, hospital bathroom. The memories are blinding. She's that baby again and I am pulling on her to move and breathe and win. She is tired. So tired. She can barely move anymore and lays slumped into my lap, drenched in shower water over my two day, worn through jeans. I am tired too. But I wash her hair and stroke her head, feeling her fall into my hands. Feeling her exhaustion. Feeling the fight leave her through my fingers and I can't catch it. I am broken because I can't fight for her. I can't keep that spirit tightly wound inside of her. She isn't the baby sharing my body, she is the body sharing my life. If she can't fight, I am nothing. She is everything. So I wash her hair and pray like hell. I beg for my own fight. I beg for answers. I beg for selfishness to have her for as long as I can. And I remind her, I am a survivor. WE are survivors. Giving up isn't who we are. She nods and cries. I know that look. I know it well. I know it so well I have to look away. I pull her back into my lap. We cry together and I wash her hair again.
Tuesday, January 21, 2014
I can still feel the steel chair under my legs in that filthy but over bleached room in the government center. It was one of those moments that imprint on your memory...like a branding iron on the hip of a calf. I was about to lose my house. My husband had moved out of state and we eventually separated and then by sweet mercy, divorced but before that, it was just me and my two girls scrapping to make it. Having been a part time work at home journalist to now a full time bread winner, I simply could not do it. The cost of two in childcare on my income would leave a pittance for a mortgage and to work full time from home was not an option. I did everything I knew how to do. I donated blood, I sold nearly everything I didn't need desperately and prayed every night for some kind of relief. I remember sitting outside on the deck of my about-to-be-foreclosed home and wondered how it got this way. How I became so dependent on someone who could so easily walk away. How was I going to save this house. And when it got very dark, how could I feed my girls. As hard as this time was, it was by far the most powerful. I was reduced to a frantic frugality I had never known. Walking over driving, bartering, reaching deep within myself to stay afloat and alive. And despite all my best work, the bottom came. My house was in foreclosure. I had no child support and only a meager income I could use to keep heat on. A broken faucet, repaired by a greedy plumber took two weeks of my income and I realized I had been taken down. My fight was futile. My friends and parents, not sure how to respond to my divorce opted out of getting involved. Except my beautiful grandmother who kept my girls warm that winter and kept my car payment current. And then my aunt...she came with me to the local government office to apply for food stamps. It was the single most excruciating day of my life because defeat found me and swallowed me alive. Frankly, it was the most defeated I have ever felt. The first day my EBT card arrived was not the relief I thought I would feel. As much as I knew I could now feed my girls on the "generous" $260 a month, I had to inhale the humiliation that I was now, "one of them"...the very ones I helped for years...the very people I advocated for...the very mothers I took pity on over the holidays and provided presents for their kids. These were now my sisters. I realized how far I considered myself away from them on a social ladder. I remember watching their stories on Dateline and feeling emotional about their plights and harrowing experiences of poverty and challenges and defeat and yet here I was. One. of. them. It only took three months then my part time job went full time and I was granted a commission by the state to work on a three year journalism project that would change my life - and yet it had already changed. Before my presentation I was hitting consignment stores to find a suit to show up at an event that was funded by the wealthiest donors in Tennessee. Sharing expensive catering over cut glass bowls and comparing shoes and art found around town I saw myself in a different way. Because I knew how to hold a wine glass and could speak freely about Matisse didn't surprise me...I am educated, cultured and well mannered...but they never knew I would retreat back home and pray the lights were still on and I could scramble enough dollars to pay a sitter. I am okay with the lie I was living...it was saving my life and making millionaires feel good about funding me as a writer but why? If they knew I was losing my house and could barely feed my kids, was I still the darling they thought they landed? It didn't matter because I never went back there again. That job took me to DC where my destiny landed in the lap of the man who would alter my path permanently. Now, years later, in my comfortable upper middle class suburban home, I am grateful every day for my life, for my husband and for my peace of mind...I don't worry about how I am going to buy coats anymore. I don't worry about stretching a box of pasta for three nights either but what I do know is I am only a few paychecks away from that girl. The memory is ingrained...it keeps me aware and alive and in many ways, humble. I do a lot of donating and am always on a cause because as much as I love helping people, children being among my favorite, fear of survival is deeply rooted in me. I am today that girl I had hoped would come rescue me all those years ago. I never want to lose sight of what matters and never want to change the emotion I feel for struggling mothers. I never want that imprint to fade. It is who I am today. Not comfortable, grateful. Once you have experienced that kind of depth and poverty, even if it's only six months, it writes on the slate of who you are and it never leaves you. Ever.
Sunday, January 5, 2014
There I was...so excited for my dad to come home. He's been traveling for several weeks with a rock band in Europe and I was so anxious to see him. I remember watching him come through the door like Moses parting the red sea. We scrambled for his hugs and for his smile. It was one of "those" moments that you never forget. He was so happy to see us and we were now complete in his arms. I remember curling up that night feeling like my home was now secured by the Captain. All was calm in Pleasantville. Waking up and racing to school to tell everyone that my dad was home and all the things we were going to do. He had bought me a new doll from every country he visited and I couldn't wait to have my United Nations doll party on my bed after school. I came home and ran down the hall but curiously noticed my mom was in her room talking...on the phone...those land lines never let anyone get far and that white curly cord kept her bound to the bed during all calls. Being the very advanced age of eight I listened...through the door - you never know what kind of information you can collect about upcoming holidays or ...well...me :) She talked about my dad being home and all the excitement in the house. I couldn't stop my heart beating - just hearing those words activated my body like an engine being jumped. And as I pressed myself up against the pale wood door, I heard her say it. "He was happy to see the kids but really surprised at how chubby Dawn got...we both are. It's like you can barely see her eyes when she smiles anymore"...and that was it. The shot heard around my world. That man who was my everything saw me in a way I hadn't seen myself before. I remember sliding down the door into a puddle on the hallway shag carpet floor. As my mother went on about my eating habits and how she has done everything, white noise/white noise/white noise. I kept blinking and wondering...was I fat? Did I somehow become some giant slob that after not seeing me for several weeks, that's what lingers in his mind? And now my mother agrees? And is telling friends? How could I stop this. I needed to stop this. I couldn't disappoint or gd forbid, embarrass them. I examined myself in the mirror. I didn't see the weight - maybe that was the problem. I couldn't see how fat I was. That was even worse. How could I get thin if I didn't know what it looked like? And so it began. The starvation diets. The hiding food. The bypassing snack at every baseball game I played to the joy and applause of my parents only to retrieve it later out of my mitt. The calorie counts on the fridge...the way my mom would glare when I would trick or treat and the way my dad would hug me in pride when I skipped the sugar contraband. I defined myself by my innate ability to eat nothing but grapefruit for three days and then eat like an inmate on release for the following five. I was crafty. I could binge, vomit and then binge again. I could "dress skinny" in the "slimming" blacks my mom always found me. I could suck in my stomach in every picture. I could take diet pills and drink only water for two days. I could do this. It became who I was. It never really ended for me...he remarried a woman who would tell me she was taking me to dinner and then 'surprise' me with an aerobics class. And a "free" weight watchers' membership. And my favorite...for my 19th birthday they filled my freezer with weight watcher meals and put a bright red bow on a new kitchen scale. A daily reminder of what my calling was...to lose weight and be pretty and skinny. I have dealt with a horrible body image my entire life. Fretting about every pound I went up or down and the day I saw my own seven year old daughter step on a scale two or three times "to get the lowest number", I resigned the battle. It's just not about what I was eating, it's about what I was programmed to think, to feel and to believe. It's a mantra that says I am nothing if I am not skinny. When I was skinny, I was a single, pregnant bartender hoping those college classes at night would materialize into a degree and a job one day. I was insecure, broke and without an ounce of morality but yet, I was skinny so all must be okay, right? I remember curling up with my pregnant self and promising that little baby would never worry about what size pants she would fit in. I wanted her to shine like a beacon on every bay. And yet I was all talk...each prenatal visit would beckon the question from my mother, "how much have you gained"...and I would always lie. Shame and self loathing, even in my 20s, as I was becoming a mother hoping to distance myself from the only one I knew. The media, the gossip, the attitude about women and our bodies will not change. I am not going to celebrate or recognize defeat with every pound. I will teach my girls about healthy choices, not low carbs, about strong attitudes, not calorie contents and about being kind and empathetic, not thin and empty. Out goes the scale, out goes the numbers, out goes the celebratory photos of my weight loss...it's. not. who. I. am. If I could go back to that day when I could hear my heart breaking in that childhood hallway, I would walk in to my mother's room. I don't really know what I would say but it would start with STOP. But I can't. And really, she learned it from her mother and my father just does what his wife does out of fear. So as far as I can see it, I have a choice. I can continue hating my body or fix it the way I want and shove the light to the front of the line. Find my spirit and let her wear the jeans. Teach my girls to love it, embrace it and run with it. Their bodies carry their souls not the other way around. And remember that despite not being that little girl, I am still that girl. I can't outrun her but I can raise her again. A little older, a little smarter but just as smiley. And guess what - in my bright shiny new adult body...you still can't see my eyes when I smile. So fucking what. ********** ed note: My father would like say this conversation with my mother about my weight never happened. While I appreciate the correction, my blog is about my feelings every day since and the multiple moments where I felt shamed. Since it was very important to my father that this notation be added, I am providing it.
Thursday, December 5, 2013
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
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.