Search

cancer is a symptom

Love & loss

That face you make when you’re on oxycodone and you have your mala beads and a salmon colored scarf and you can’t tell if you’re crying anymore from all the love or all the loss.

Advertisements

The subtle body

After about 25 years of intimate friendship, I am saying a bittersweet goodbye to my left breast today. All of my biopsies came back positive, so, tomorrow morning they will remove the breast and a good portion of the lymph nodes in my armpit. If lots of the excised nodes are cancerous, I will also need radiation and chemotherapy. The docs think this is likely.

No doubt I didn’t want to be here, but now that I am, I am embracing the power in it. The morning after we found I would need a mastectomy, I started to see future me – a super strong yogi with a crazy gorgeous tattoo celebrating the place where the left breast was.

Yoga teaches me that we are more than our literal body, we have a subtle body that reaches deep and far in the directions of love and compassion. Today, I imagine my subtle body like this asian pear tree I grew in Oregon on our household greywater. I had to learn to prune and care for my fruit trees and I made mistakes along the way but they still made the juiciest and most beautiful fruits. Tomorrow my physical body gets the pruning it needs to survive. With this letting go of what I was, my spiritual and emotional body can grow new limbs and new roots.

I am so thankful that my mom and Eric, and dear friends Katherine and Kate will be with me as I recover this week at Dan and Melissa’s beautiful farmhouse on Bainbridge Island, where they have a little flower farm and, of course, lots of beautiful fruit trees.

As you can guess, I probably will have a lot more to write and say about this part of the treatment, my decision to not pursue “reconstruction” right away, the ways in which my life and identity have to change, and the tearful ego battle involved in accepting and embracing those changes. But today I just want to invite you to send me your best vibes for tomorrow’s big surgery. It takes a tribe to heal a woman!

Also, to all who have sent along tips and links and ideas for healing, keep them coming. You represent a lot of collective wisdom, and I’m honored to learn about the healing strategies you find on your travels. Love you!

Infinite possibilities

From E.C. Salibian’s beautiful essay, Chemo and Me, in the Sun Magazine.

Biopsyasana

It appears, at least to the magnetic resonance imager, that I have a little more cancer in September than I did in August. So, I had a triple biopsy last week and they postponed my surgery until we have a better idea about how much to take out.

By that I mean we spent a marathon 5 hours at the hospital on Friday where they used a big needle to suck approximately 15 tissue samples from three locations while I lay on my side with my left arm cramped up over my head and my right butt cheek completely numb. Biopsyasana.

By like, hour three on the procedure table I had laughed, cried, and was trying out my more esoteric cancer theories on the doctor and ultrasound tech. They were both just lovely, dabbed my eyes with tissue when necessary, and humored my rambling, adrenaline fueled ideas on tooth meridians and energy blocks. We also got to discussing how to improve end of life care (morbid, I know) and how doctors sometimes act like technology-wielding robots and it would be cool to have more of them act like humans more often. Somewhere in there the doctor discovered my first suspicious lymph node, sighed audibly, and said the words I am starting to fear most from her kind: I’m so sorry.

Having verified that she was an actual human, I floated a confessional about my decision to not do radiation last year and the doctor was so kind. She said you know, we over treat thousands of women and you didn’t want to be one of them. You didn’t know if it would come back and hey, now you know. No shame in that.

Man did I need to hear that. The relief. Though I wish it weren’t so, sometimes just having your perspective validated by someone in a white coat (or in her case, a super cute black silk sleeveless little number) is so soothing. It is pure magic to feel as if you’re not alone in how you see things and that your actions, while unconventional and maybe dumb, are understandable.

My judgment clouded by emotional exhaustion and physical discomfort, I lapsed back into Grey’s Anatomy that night (thank you Shonda Rhimes for the multi-episode lessons on addressing racism in the work place in Season 12 and I have found it in my heart to forgive you for endorsing Hillary Clinton).

I awoke the next morning, purified by pain and TV, and felt like a million bucks. Eric and I walked in the forest near his parents house and I was wowed, for the thousandth time, by the pattern and color of vine maple leaves against the sky, the swaying and soaring of the big leaf maple canopy in the breeze. I sampled some early high bush cranberries, feeling that each sour bitter drop of red juice was somehow fortifying me for the days ahead. I held onto the voice of the ultrasound tech hovering above me during the biopsy, her masked face so close I could see the designs in the irises of her eyes: “you’re going to get through this and go one with your life and be fine.”

Recurrence

So, friends, the journey continues. I found a super tiny bit’ o tumor at the site where I had my first one removed last year. It turned out to be the real deal, though it is not as advanced or severe as my first. Since I declined radiation, I accepted the risk that local cancer cells might continue to grow and so here we are.

I have been processing what this means by doing a lot of yoga and getting my Illustrated Rumi off the shelf, and let’s face it, occasionally losing my shit. A lot has bubbled up, and I am feeling it and releasing it and repeat and repeat. A dear yogi quoting Pema said, we’re the sky and everything else is the weather. Yup. Of course I’m also dealing with an impressive natural disaster here so there’s that.

Anyway I think I’m going to be ok. It takes time to heal and change patterns that were years and generations in the making. But I know we have tremendous power to heal ourselves, and to transform even on down to the DNA. Damage was inflicted on my grandma or my mom’s endocrine system that provided a path for cancer to walk through my body. But just as their DNA may have changed in one generation, so can mine. Just as we have inherited a lot of toxic crap that leaves virtually no body or mind unsullied, so can we flip that and give the next generation true healing. That shit we were taught in high school bio – that we are helpless victims before mysterious genetics that control our destiny and all of evolution… turns out epigenetics says it’s not so true.

So I’m headed back to Seattle in an odd anniversary of my trip there last fall, to have more surgery and get some big scans and see what else we are dealing with. I will be given the same ugly binary: whether I want to nuke my breast, heart, and lung with radiation, or whether I want to cut the boob off (the old Trump v. Clinton!). They will also again push the only drug Western medicine has for my estrogen-driven cancer – one that will stop my hormones all together, sending me into false menopause at age 38. I will have to get real with myself and my god (nature yo!), be humble before the storm, and choose wisely.

After a Bernie Sanders infused hiatus from my holistic cancer care regimen of research and multifaceted healing, I am jumping back in full force. For me, the prospect of a national political revolution was worth more than what often feels like a self-obsessed cancer battle. But I do want to be around to be a part of Our Revolution so it’s time for me to gaze inward again and do the work of establishing new patterns, researching all I need to know, and finding the guides out there who can help me. I have made some real accomplishments this year with reducing stress, finding community, and simplifying my life, but it’s time to take it to the next level and heal this.

I ask with my full heart that you avoid feeling bad for me and that you make your prayers or thoughts or love real by joining Breast Cancer Action or finding the group in your area that is taking real action on pesticides, chemicals, fracking, or any of the other ways we are still inflicting cancer on vulnerable new humans. Please #ThinkBeforeYouPink and don’t donate or participate in breast cancer crap that often turns out to be marketing spin – they actually do make giant pink fracking bits and put pink ribbons on make-up that causes cancer. Remember that medical science is confounded by young women getting breast cancer – it ruins their hypothesis of how cancer works. I have stood in the exam room and asked why they are explaining a cancer hypothesis to me that does not account for my age or health and been met with silence. It’s time to end that silence friends, and it won’t happen by itself, and I can’t do it by myself, so please join me.

And thanks to all who’ve been with me and love me and are patient with my craziness, and also to my new community of Petersburg for caring for me and doing yoga with me! And, of course, shout out to the ocean and mountains and the traditions of yoga and Thai massage that welcome me into something bigger than me and last but not least to the salmon that give me sustenance and our family’s livelihood.

Get off my chest

This essay has also been published over at Bust.com!

Within a few weeks of my breast cancer diagnosis, I received a sympathy card from a male acquaintance who knew very little of my prognosis but, concerned about the potential loss of my breasts, encouraged me to have them professionally photographed before I was treated for the disease. At this point I didn’t yet know if or how far the cancer had spread or how serious the treatments would be, but the card fanned a cold and creeping fear that I would need a double mastectomy at the age of 37. This jarring fear – prompting tears as I put the card back in its envelope – masked another feeling, one I wouldn’t daylight until much later: the sense of violation as I realized my breasts had somehow become the intellectual property of people I hardly knew.

Three months into my relationship with cancer, it occurs to me that breast cancer is not only an abstract hardship I must pass through, but a deeply gendered hijacking of my own body. And of course it is not just my body, but what many would see as exactly the most beautiful, precious, fecund, sought after, and sensitive aspect of my female body: my breasts.

While this violation feels fresh, the cold truth is that all of my life my breast tissue has been assaulted by dozens or hundreds of unregulated carcinogenic chemicals without my consent. Actually, studies now suggest that this may have been going on even before my life, when my mother’s ovaries were invaded by DNA-altering chemicals during their development inside my grandmother. Neither she nor I granted these chemicals permission for entry into our bodies or those of our future children, and in fact I’ve worried quite a bit about how to keep them out. But the clandestine physical infiltration happened nonetheless, and my body was and is the scene of this crime.

As the understudied effects and interactions of these chemicals – disabling the immune system in one instance, dangerously mimicking estrogens in another – synergized with a period of poor health and high stress in my life, my left breast was infiltrated by a steadily advancing tumor. The doctors called this Cancer, declared war, and placed my breasts on a briskly moving conveyor belt toward the hideous and disfiguring things our society uses to fight it.

Throughout all of this, my breasts were gently but consistently violated by everyone who considers me as a breast cancer patient. Every nurse and doctor and assistant and technician who I’ve opened my shirt for; every acquaintance who has asked me how I’m doing and then tried not to glance down to gage my symmetry; every professional colleague I would never have otherwise discussed my breasts with; all of these people are now granted unfettered access to my chest.
At first I embraced the attention, reflexively disavowing any self-consciousness in exchange for full treatment, good communication, and empathy. The doctors were welcome to my breasts because I wanted them to heal my breasts. Acquaintances were invited to talk about my breasts because I wanted them to care about me and I welcomed their concern. When a nervous male med student asked if he could stay to participate in my oncologist’s physical examination I smiled and welcomed him, cracking jokes in order to make him feel more comfortable. When a friend asked in a crowded coffeeshop if it was alright to ask questions about my breasts I smiled and accepted her inquiry, thankful for her care.

I didn’t and don’t blame or resent any of these people, and above all I’m grateful for their help. But in order to maintain this gratitude, this non-resentment, I’ve had to separate from my breasts, to give them away to everyone else. I’ve had to revoke their status as private or personal, and assign them to a new, more clinical and public category that I didn’t choose or even really notice forming.

_____________________

This fall, shortly after my tumor was sliced out of me, author Ta-Nehisi Coates received the National Book Award for providing a blunt and needed reminder that racism, among other things, destroys people’s bodies. More than a set of concepts or the words used to describe them, he writes that racism actually “dislodges brains, blocks airways, rips muscle, extracts organs, cracks bones, breaks teeth.” As I stayed up one night reading his book, a stray sentence jaywalked the intersection of race and gender from Coates’ world over to my own: “You must always remember that the sociology, the history, the economics, the graphs, the charts, the regressions all land, with great violence, upon the body.”

After three months of googling breast cancer studies, articles and statistics, and with a deep purple scar running the length of my reduced left breast, this sentence reminded me that breast cancer – and all that lopes in with it – was actually happening to my body. Breast cancer was not just a societal abstraction that happened to be occurring in my life. It was a violation of my body, first by chemicals, then by doctors, and now by everyone I know.

And though America has come to be comfortable talking about breast cancer (a thankful break from 30 years ago, when women suffered it silently), it almost never talks about this violation. America loves to sexualize my breasts, but it refuses to acknowledge the great irony of a culture that toxifies what it most objectifies, and then upon this toxification, rushes to castrate what little (sexual) power it afforded me. America thinks nothing of profiting from the malignant violation of my sexuality and fecundity with more violence – the burns of radiation, the poison of chemotherapy, the slash of surgery. Though I’ve never experienced an actual rape, the intrusion of breast cancer has me thinking harder about American rape culture, about a society that finds so many ways to enter women’s bodies without consent.

Those who are violated often have contradictory feelings about the experience, and I’m no different. After diagnosis, I was terrified of losing my feminine form. I wanted to feel symmetrical and sexual in the way that has always been available to me. But after surgery I was also fiercely accepting of my disfigured breast, the way it redefined femininity, the way my scar suggests an encounter with a wild animal. Some days I wear no bra and I don’t care how lopsided I appear. Other days I leave the insert in one side of my new padded sports bra and enjoy wearing a tight shirt to yoga and feeling balanced. I was terrified to peel back the layers of chest bindings the day after my surgery and see what I had become. At the same time I resented the friend whose central concern was the memorialization of my lost femininity via photography. I want to love and hate my altered body on my own terms, but the external and sexualized nature of breast cancer means I share these feelings with the world.

The sense of violation, the discomfort with forced publicity, are not because I’m extremely private with my sexuality or disassociated from my body. I’m neither. I’ve always rejoiced in the pleasures of the flesh, and believed that our animal natures are to be celebrated socially, that the expression of physical pleasure, play, or desire is also a delightful expression of our freedom and agency. But until now the terms of this freedom were mine for the writing. With breast cancer, the sharing of my breasts and the intrusion of my body are not my choice. And where I have chosen to be more public with breast cancer than others might, it’s felt like a resignation or acquiescence to the inevitable. If I can’t escape the inescapable, than at least I can write down my resistance and in doing so bend it just a little more closely to my form.
__________________

Like 200,000 other American women this year, I was assaulted by cancer in a societal alley so dark I’ve had trouble making out its face. How do you characterize your cancer when there are no easy answers to questions of causation, treatment, recurrence? Though I’ve joined a vast tribe of the breast cancered, I’ve felt alone in my questioning of the condition – I just can’t accept the cancer Western doctors are selling me at face value. As a result I’m deeply engaged in a lonely fight for the cultural and scientific identity of my assailant. And it’s not a fight so much as it is a quest, one that has so far yielded the fruitful idea that cancer is not a disease in the traditional sense, but rather a symptom of lives – and a society – dangerously out of balance. My research has exposed cancer treatment as a vast and powerful arm of American capitalism run amok, the cancer industrial complex a profiteering tail that wags the dog of chronic illness.

I have come to experience most doctors as well-intentioned people so indoctrinated with corporatized medicine that they are stuck in (profitable) loops of prescribing toxic remedies for the symptoms their previously prescribed toxic remedies caused. In order to step away from their “slash, burn and poison” model of cancer treatment, I’ve had to abandon the notion that cancer is something like a virus, if not communicable than at least independent, nefarious, spontaneous. This philosophical distance from the mainstream of medicine allows me to squint my eyes and see cancer as a rather logical marker of unhealthy lifestyle choices synergizing with environmental contaminants, genetic history making some more vulnerable than others. But while this definition seems eminently reasonable to me, it does require that I claim a cancer worldview and resulting treatment plan that my doctors disagree with. While it is thrilling and empowering to be creating this healing path by walking it, I also ultimately must put my own body on the line in order to test it out. This is the first time I’ve had to measure my counter cultural ideas with my own blood, breasts, and body.
__________________

I don’t mean to say that cancer and its entourage landing on my body is more devastating or meaningful than its effect on other bodies, or that the violation of breast cancer is really comparable to the bludgeoning impact of racism or homophobism or any other massive cultural force that alights on the body. I just mean to say that I am starting to see and feel the myriad ways cancer has marched into my body. It hurts. I want my body back. I want to reclaim my breasts for my own again. In doing so, in writing this and sharing it with you, I find myself both a step closer and a step farther from that goal.

Mammograms didn’t save me

So, in case you were wondering, my tumor was not detected by a mammogram. Despite its 1.6 centimeter girth, the mammogram machine couldn’t see it.

Continue reading “Mammograms didn’t save me”

Radiate this.

I have so much to say about my decision to not do radiation that I don’t even know where to begin. What I know definitively is that the day I made the choice to forego it was one of the best days I’ve had since this whole cancer thing started.

Continue reading “Radiate this.”

Nuclear medicine & the sentinel node

Before you have surgery for breast cancer, they force you to have radioactive liquid injected into the tissue surrounding your nipple. Then they track that black plume of radiation as it travels through your lymphatic system, in my case using an x-ray detector and computer from 1986 (I asked). Note the 8” floppy on the desk. Continue reading “Nuclear medicine & the sentinel node”

Create a free website or blog at WordPress.com.

Up ↑