Share Your Story Saturday: Meredith
January 22, 2017
Meredith | 41 | Chondrosarcoma
[Give us a brief medical history of your experience with cancer.]
the same week my father died in July 2016, I was diagnosed with a rare bone cancer called chondrosarcoma. this is a bone cancer of the cartilage and is not responsive to chemo or radiation so my only way to fight it was with radical resection, what they refer to as limb salvaging surgery. in the fall of 2015 I began a yoga class that brought the focus to my self, and through yoga I began to see what my body was capable of and how my right hip didn’t seem to want to do the same things as my left hip. I had no pain, only limited mobility. it began feeling as if there was a tennis ball in the hinge of a door, it felt as though something was physically blocking my flexibility. as a self employed writer and photographer I was in a period of being uninsured so I quickly looked for health insurance, in hopes to see a dr for what I believed was a labral hip tear from a traumatic injury during a home birth 11 years earlier. i had to wait months to be seen by a fantastic new dr in my small town and got an appointment for July 2016. “neoplasm of uncertain behavior” was my original diagnosis with many many tests to follow to finally determine the bewildering diagnosis of bone cancer: chondrosarcoma (low grade I). my son tells me “yoga saved your life!” and he’s right. in August 2016, the eleven hour surgery removed a 4″ section of my pelvis along with a tumor the size of a grapefruit lodged in my inner thigh. Reconstruction consisted of pig skin and bone screws, the removal of many muscles including 1/4 of my quad, some of my obliques, my adductor muscle, and some abdominal muscles including the inguinal ligament at my hip and some lymph nodes. my hip joint was left intact and I had proactive hernia repair to minimize the need for hernia surgery in following years. Then a rather large skin graft was taken to patch me back together. 180 stitches and a scar nearly three feet total, I had to accept the unknown, embrace the letting go, and somehow find the immense trust needed for steady hands and a team of surgeons that will become friends over the next ten years as they follow my health as a cancer survivor. I used to chant “surgery and cancer-free” like an om, a mantra, a worship at the feet of the gods. this is the face of a woman telling people she had “hip issues” because her mouth was not yet able to form the sentence “I have cancer” to anyone not in the innermost circle. this is the heart not yet able to look her three boys in the eyes and whisper the truth to them at the kitchen table. this is me admitting I am the sheltering mask of overprotection from a reality I was not yet ready to face myself. before the 4am wake up call that found me kneeling on the cold hard hotel bathroom floor just two hours before my surgery, I prayed all prayers for all time, praying until my knees ached. I made it through surgery and was able to keep both my legs. now I chant “cancer-free and travel the world” as my new mantra.
[What things were hard for you when you went into remission?]
craving normalcy. since coming home from the hospital our boys have learned about the existence of frozen waffles because I didn’t have the energy or physical ability to stand and cook meals. so pick your battles, we say, and leggo my eggo. at first I couldn’t even walk, bathe without supervision or buckle my own shoes, I needed help for absolutely everything and we were honestly unprepared for what recovery was supposed to look like. I have to trust the process and practice patience because one of my surgeons said “give it two years” while my other surgeon said “this is all still so fresh” in a fatherly way, to remind me not to get ahead of myself. instead, I ask that my body be a temple. let my scars be prayers, all 180 stitches. these 30 inches of thick purple scars. these lines are now a rosary, mala beads, a roadmap to my former self and a guide to the new me. this continues to be the reminder that bodies are sacred, even when broken, especially when healing. this is a feeble attempt at reclaiming my self. my identity as a woman was called into question, even if only in my mind (the challenge of cancer is exactly that, mind over matter). in the mirror i greet my reflection with kindness and strength. a renewed sense of wabi sabi: imperfect impermanent and incomplete. If I air my scars they might lose the power they hold over me right now. for some reason this challenges the age old definition of what it means to be feminine. but does it really? I’m questioning reality, questioning the stories that repeat from years of overuse, thanks to fairy tale princesses and a society and media fixated on photoshopped perfection of the female form. this is the new definition of womanhood and these are my battle scars. it’s taken some time but I am beginning to accept them, maybe even like them. I don’t know, it’s still so fresh as i’m only six month post op. i’m still coming to terms with it all. but it’s going to be one hell of a bathing suit season that’s for sure.
[Please share some explanations/stories to elaborate on this.]
“well it’s not a pretty leg…” he told me matter of factly. he has kind eyes and gently rests his hand on my shoulder as he says goodbye, like a super smart and overly protective older brother. his comment was not attached to my body but instead a reflection of his own mind. a glimpse into his perspective as a plastic surgeon analyzing his handiwork on the crazy canvas he had to work with when he met my draped body on the operating table, naked and cut down to the bone. now six months later, I learn that my body cannot help being what it is, it’s simply freaking out with no working pumps to move fluid. the diagnosis is secondary lymphedema. as if cancer wasn’t enough. it’s just a life changing, life rearranging illness… just a permanent side effect of cancer surgery with no cure, only compression treatments. lymphedema, you add insult to injury. I go through my usual process while driving with the music blasting loud: overwhelm, anxiety, sadness met with wallowing in self pity, then eventually rising up in anger then determination to not go down without a fight. ultimately I come back to true self and land on love. that’s all. self care and self love. always and forever. so I will fight for my life against this darkness, this discouragement that seeps in slowly with the cold and the realized limitations that envelope me now. inside of me lives one part acceptance and two parts refusal to believe it has to be this way. so instead of crying over the absurdity of it all, I will manifest dreams of warmth and sun and sea and travel. I will not look down the barrel of what if’s or why’s, I will not concede to the overwhelm of papers or the despair of time but instead find ways to dream, and I will say thank you for my legs, for my damaged body that makes me feel ancient, for my first world problems, for my life, for my everything.
[What things have you done to ‘Embrace Your New Normal’?]
getting back in a pool. putting on the bathing suit that reveals so much of my scar and instead of swimming laps for cardio after a morning of intense yoga, I try simply walking in the pool and then later I float as a form of meditation. it’s a slowing down. a redefining. not altogether different from what was, but just new. I am looking forward to the day I can start yoga again, I’m giving myself two more months to gain strength and stamina. my doctor said I might never rock climb again but I’m determined to prove him wrong. sometimes I need help with grocery shopping and that’s ok, I’m learning to ask for help and learning to receive it. these little things feel like huge personal growth work. we’ve also started traveling again, in a new way: less sitting in a car for long lengths and more arriving quickly at a destination to experience new sights and sounds. there’s so much of the world I still want to see!
[Please share some explanations/stories to elaborate on this.]
I’m still standing. yes, if I were a superhero that would be my theme song but I’m just a girl who faces mortality every time she glances down at her atrophied leg. this is me clinging to the edge of the pool, trying to find balance to simply walk in water. I try not to watch the swimmer in the next lane and I try not to think of the sheer freedom of movement and a body gliding through water, she swims lap after lap just as I did this time last year… but now it’s doggy paddle with my legs floating behind in their disconnect and me trying not to cry the whole time, frustrated with my body my inability my everything and the way this illness has robbed me of my confidence. in the silence of the pool and the muffled hum of water splashing the edge of the pool, I fumble my way through, channeling my determined spirit while simultaneously allowing myself permission to grieve, to cry, to flounder in these waters I used to own as my former mermaid self. I see the lure of being numb. of feeling nothing. because when nerves fire and sensation returns it brings discomfort and pain. it’s bigger than my leg. but it’s my leg teaching me the life lessons. on slowing down. on what matters and what doesn’t. on life post-cancer: energy, endurance and patience. “how’s the leg?” oh, the leg. it’s become its own thing. conversations begin by calling it into question. it has its own identity now, its own feelings… hot, tight, swollen, achy. I drag it around like a heavy tree stump. but when I am in water I am free from gravity, free from physical restraints. more of this please, yes, because with water comes forgiveness and self love and finding peace with the pieces that remain.
[If you could share one piece of advice with someone who’s recently finished treatments and adjusting back to life, what would you tell them?]
I’m not sure yet that I have good advice as I’m still working through this early stage of survivorship, but I write to process, I take photos to track my recovery. I share the hard truths with a group of trusted friends. the reality is frustrating and scary and angering and can be very dark. no one talks about this. dr’s don’t prepare you for this, the fog brain or the grip that depression lurks around the corner of your diagnosis and yes, recovery. of course, once you’re welcomed into the world of cancer there is grace and beauty and a collection of survivors and thrivers. you are one of them now: a warrior. I look to find one thing each day to be grateful for. some days for me it was quite small. the witnessing of simplicity: the wind in the leaves, the hawk circling above. the more you seek gratitude the more it finds you. gratitude acts like a deep exhale. the test, I’ve learned, is to skate along the edge of death while contemplating life. to turn the tragedy into personal triumph. it is still very fresh for me, as I am only six months out of surgery. fumbling back into work and life and mothering. grateful (and yes frustrated too) it’s a daily practice. but I will not be angry with God, the universe, the karmic wheel or the divine plan. my heart will not turn to a small bitter stone. i will continue to say thank you, for the rest of my days.
Love you, Meredith. Thank you for being you.
Click here to share your story of cancer survivorship with us! It is amazing how much you can help others struggling with similar trials by speaking out about them. Thank you Meredith for being apart of our community and sharing your light. Your words and your story are power.