Having stage 1b breast cancer isn’t an easy diagnosis to accept. There is a gray area to which one can ultimately become fixated. It isn’t Big Cancer; it’s little cancer; but it’s still cancer. There are a multitude of events that happen before the diagnosis is revealed. So, let me take a step back.
It was the fall of 2015. I had just returned from hiking Mt. Whitney on my own. I was supposed to hike it with family members, but half of the group gave into altitude sickness and the other half, while finishing the trail, were miles behind me. In all my years of backpacking in the Sierras; countless trips over challenging terrain, I had never hiked on a trail that required I wake up at 3 am to start hiking. It was my first time hiking alone in the dark in the wilderness. I packed my essentials, my hiking poles, layers, snacks, water and my most important piece of equipment: my headlamp and set out, alone up the canyon in the dark.
As I hiked along, I could see the lights from the other hikers ahead of me or below me on the trail. They looked like tiny fire flies. I heard the wind as it whipped through the pines and I could hear water in the creek nearby. There were these gigantic shadows on the walls of the granite canyon. I began to become frightened. The shadows looked like monsters and the noises made me anxious. At one point, I began laughing at myself because I would see or hear something and as I turned my head to look at it, my head lamp would shine in that direction and penetrate the darkness. I thought to myself, “how often do we make big scary shadows in our lives and find the surest way to dispel those fears by shining the light of truth on them?”
We show up in the world with all the tools we will ever really need: love, our light, our true purpose, our personal resources and inner strength. On my way up the trail, I looked up at the sky that was adorned with a billion, beautiful shinning stars. I would stop to take a break and look out over the stark, barren, granite landscape, bathed in the early morning alpenglow, I felt an inner knowing and connection to something so much bigger than myself. Hiking Mt. Whitney was a magical experience for me in that it reminded me of this very idea: we make up the scary monsters and we have the tools to see them for what they are.
I had been living in a world of scary monsters lately. Work had been really stressful, and I was becoming more and more disillusioned with my sense of purpose in life. I had called my friend Paul in hopes I could convince him to skip out of work early and meet for lunch downtown. Paul worked from home for progressive nonprofit organization. He was level-headed and a good listener. It felt a little like we were teenagers ditching class.
As we walked back from lunch, I confessed to Paul that my left breast was bothering me. I hadn’t taken it seriously until he refused to take another step forward until I called my doctor and set up an appointment. Thinking back on it now, Paul might have saved my life. Ironic, because he has since died. The ache of knowing that our last conversations were all about me leaves me feeling a little self-centered since I’ve discovered that he was hiding a deep depression inside of him to the point that, in order to end his suffering, he determined the best course of action was to take his own life.
Because of the phone call that Paul insisted I make, I found myself in an exam room, my breast exposed to the technician who would be taking the mammogram images. What was hiding inside of me?
She tugged on my left breast as she inserted it into the large ominous plastic machine with pink lettering, indicating the soft and sweet affiliation with the others who’ve been here before. There was a low humming and a sprite beep as I held my breath.
Don’t move! Don’t give the machine any
chance to see what’s hidden there!
About a week later a letter arrived from my insurance company. In small, nondescript, unapologetic black and white 10-point Georgia font, three words “a suspicious finding” jumped off the page and landed inside my throat. I was utterly floored. So many thoughts blazed into my mind all at once, setting off a wildfire of fear and anxiety.
I was scheduled for a needle biopsy almost immediately. That first appointment was humiliating, to say the least. The spot where they inserted the 9-mm needle still stung a little while the surgeon discussed my set of options as if I were taking out a loan at the bank.
The pain rose up as he spoke, as if almost bearing witness to a deeper pain hidden inside. It wasn’t just the physical pain, but the pain that comes when you feel vulnerable, naked in your hospital gown with your breasts exposed to strangers, machines humming, as they whisper about what they see on the screen.
And you can’t see it. NO! It is a secret!
It is a Suspicious Finding.
The gray area to which you become accustomed doesn’t stop at the diagnosis. It surrounds all of the tests, follow-up visits, the excruciatingly long waits between those tests and results, and it colors the faces of the doctors and nurses who serve you.
Future plans are put on hold. Dreams are shelved. Moments that once seemed dull or mundane now suddenly have a new meaning. Every moment takes on a new dimension. Everything is slower, clearer and less cluttered than it was before. “I have cancer,” you find yourself silently muttering as you look around and wonder who among you in the grocery line also shares your condition.
When I met with the second surgeon, because that’s the kind of person I am, I needed a second opinion. I sat across from him in his office and calmly explained for over twenty minutes why I don’t have time for cancer. He smiled and gestured to a picture on his desk. “That is my wife. She is a cancer survivor. I promise to you now that I will give you the same level of care and attention to detail I gave to her. You are going to be fine.”
There is this Sanskrit mantra which goes, “Om, asato maa sad gamaya, Tamaso maa gyotira gamaya, Mrityora maa amritam gamaya” which translates into, “Lead me from the unreal to the real, from the darkness (ignorance) to the light (knowledge) and from death to immortality.”
The process one undergoes from diagnosis to treatment to recovery is a process of discovery that starts in darkness (ignorance). We and our doctors fear that this is not good news. We and our doctors do not know what lies ahead for us in terms of health and longevity. As we conduct more tests and choose our treatment options, we start to let go of the need to control and we learn to accept that we are not in control of our destiny, the machines can only see so much, and our doctors are not Gods.
We must go through the scary canyon; sometimes alone and face the unknown.
As we become enlightened (filled with knowledge) and usually, the knowledge is full of a knowing that we don’t know anything at all, we finally learn to accept that we are inevitably lead from death to immortality. We soon realize that this material plane, with all our possessions, aspirations and perception of control is nothing more than an illusion. Death, the fear of it and the ultimate demise of ourselves as a result of it, is no longer a threat, because we become acutely aware that we are immortal.
I placed all of my ignorance in the hands of this man who promised me everything was going to be fine. And what I learned is that fine is a subjective word.
Rachel Naomi Remen, MD, writes, In the Gray Zone, that the wish to control floats like a buoy above the hidden reef of fear. And to me, this summates my entire experience so far. My wish to ignore the diagnosis, my wish for a sudden flood of benevolence from past aggressors, my wish for vindication for all those who’ve transgressed me, floats above the fear that I somehow deserved this. That somehow, I made this happen.
Upon completing the first surgery, I was notified that the surgeon did not get “clear margins” and I would have to go back in for another surgery. I was already close to the end of my sick leave at work and there were pressing deadlines. My son was taking a Taekwondo class after school and I was working on my Master’s degree. I didn’t have time for this. I didn’t care about clear margins. I was already at the marginal edge of my faith.
That which we pin our most desperate hopes to, is subject to change, evolution and even its very own demise. How many times have you felt like your wishes and desires would burn a hole in your heart? When you felt that intense desire, did you ever stop to recognize that you, yourself are made from the very elements that made the stars? We are all concoctions from the original elements that came from the sun’s expansion and the planet’s violent birth and evolution. Without the gruesome conditions from which we came, we’d not be here to express the special, gentle beauty that is all of humanity.
In the middle of radiation treatments, I kept asking my doctors to look at my surgical site because it felt like it was infected. It was red, hot, and itched constantly. My surgeon dismissed me as over-reacting. A few days later I ended up in the emergency room with an infection from E. Coli bacteria. These bacteria are everywhere and could have gotten into my wound easily. They had to pump me with intravenous antibiotics and insert a tube with a pouch that drained the infected fluid. I had to empty this pouch a few times a day. The fluid had a rancid odor and I was terrified to touch it, fearing it would spread cancer everywhere.
To this day, my wound is hot, itchy and sends electrifying shockwaves through my entire left side. Someone callously reminded me that at least I am alive. Yes. I am fine, subjectively speaking.
After I completed the radiation treatments I received a ceremonious letter acknowledging this right of passage. I was moving from the active treatment phase to the passive treatment phase. I was prescribed Tamoxifen. A horrible drug; a known carcinogen itself, that is used for pre and perimenopausal women with breast cancer. It supposedly targets estrogen and progesterone hungry cancer cells by mimicking the hormones so as to starve the cancer cells. But it can also contribute to fatty-liver disease, uterine and bone cancers, excessive weight gain, hot flashes, restless legs, sun-sensitivity, migraines, among other special gifts. This drug that my doctor assured me would protect me was slowly killing me.
I had climbed Mt. Whitney in under 9 hours the year before I was diagnosed, but now I struggle with walking a short trail behind my house. I wonder if I will ever regain my former strength and resiliency. Did I cross a threshold? Am I transforming? If I am not the person I was, who am I now? Am I really going to be fine ever again?
When I confronted my surgeon about feeling as if his promise to protect me was broken, he defensively reverted to the clinical notes and coldly reiterated them to me as if to purge any association of guilt. He refused to listen to me. I felt abandoned and deceived. I wasn’t fine.
I work hard every day to rise above the fear. My strength, my hope, and my son are personal buoys to keep me afloat. It takes time to recover. Is it more time than I have to give?
My eight-year-old son was very concerned about my condition. I was honest with him and strived to share with him my experience in a way that I thought he could understand. I told him that I have kryptonite in my body and that my doctors were working with the Avengers to get it out. He now sees my scars as beauty marks; signs of strength and adversity.
This is all very magical for me, because, for a long time I suffered from my past. I had been through things that were traumatic for sure, but I couldn’t seem to get over them. The layers of injustice I’ve perceived throughout my life, the impersonal slights, the sarcastic jabs, domestic violence, poverty, and workplace harassment seemed to be counterweighted on the hope that the margins were clear the second time around.
Ironically, just prior to my diagnosis, I had told my friend Paul that I was wishing I had had a big scar for which I could point to show others the journey I have endured. Because without a scar, it’s just words and my story could easily be construed as conjecture and victimization.
And now, here I have these two beautiful scars that represent so many things: miracles in modern medicine, an ability to listen to my body and recognize signs requiring self-care, an acceptance of the death of an old pattern of my life and a movement toward a lighter, more illuminated way of being. And yes, the whole thing is still a little unreal to me.
Dr. John Holdren, a lead science and technology advisor to Obama administration argued that human wellbeing rests on the foundation of three pillars of conditions: economic, sociopolitical and environmental. Each of these conditions are present in the traditional public health system, but they are often kept separate and are not holistically integrated nor a systemic part of daily operations.
My own personal experience with the healthcare system highlights its crumbling foundation. The dispassionate and impersonal nature of medical facilities, the long waits between tests and results, the disparity between those who have insurance and those who do not, the countless phone calls and returned calls and missed calls awaiting word from your doctor, the frustratingly long drives to clinics in unfamiliar towns, the waiting, incessant waiting.
It is common for physicians to overbook their schedules, churning through 40 patients per day, often scheduled in hurried seven-and-a-half minute slots, leaving little time for them to actually talk, much less bond with their patients. Lissa Rankin, M.D. remembers a moment that changed her life as a physician when a patient recounted a visit where she longed for some compassion from Rankin, yet noted that she had kept her hand on the door of the exam room throughout the entire appointment. Our traditional health system only touched on the physical aspect of my care and left the mental and social aspects relatively abandoned; and as Rankin notes, we need to make the body ripe for miracles. It starts with listening.
In Life Place, Robert Thayer makes a poetic reference in how our disconnection from our true nature and sense of place impacts our quality of life. “We wander the postmodern landscape like hunter-gatherers, searching for bits and pieces of meaning, unconsciously emulating the atomized consumers of economists’ elaborate models. Governments and transnational corporations expect us to substitute a shallow awareness of the entire globe for whatever deep wisdom and affection we might have had for a specific place. In the process of becoming postmodern, we have abandoned the notion of “home.” As individuals, we wake up to the reality that much of the 21st century has been spent apathetically devouring capital at the expense of our personal health and wellbeing, not to mention that of our future generations and we begin to ask ourselves, “who am I” and “what is my purpose?”
I was so unhappy for so long because I compared myself to other people, wishing I looked more like the air-brushed images in magazine or made the salary of my peers. I resisted the desire to make a change because I bought into all the times someone told me things “should be this way.” I wasn’t living my purpose. I was living for others’ opinion or me. I didn’t shine my own light of truth on those scary fears to have faith in charting my own course.
Even the World Health Organization recognizes that health is a state of complete physical, mental and social well-being and not merely the absence of disease. And yet in a little less than 200 years our civilization has created transportation, agricultural, health and community systems entirely reliant upon cheap and plentiful energy and water and other natural resources, which are extracted, processed, distributed and sold through an oppressive social system that degrades and denigrates the very communities these systems were intended to serve. These drugs and treatments and the entire system in which we operated is literally killing us.
In contrast, my community of family and friends showed an amazing outpouring of love and generosity. Friends cooked meals, cleaned my house, walked my dog. My family flew out from the east coast at different intervals to care for me, my son and dog. A friend started a “Go Fund Me” site to help offset the medical bills. I was actually blissfully happy during the entire ordeal because I felt this powerful energy of community and connection. I was filled with love. I was living on purpose (the fight of my life) and those around me were also living on purpose and it was fantastic love-fest.
Now that it is over, and I am in remission, I sometimes feel lonely and less energized because I am back to my routine without the connection to community I had when I was in the thick of it.
Paradoxically, the millions of dollars, the energy, resources, social and economic capital that go into large medical facilities and our bureaucratic health systems; not to mention all the environmental regulations which are intended to regulate environmental pollution; or the traffic-choked highways to move people from here to there; or the way our food is grown and processed, and all of the things that make our reality what it is today, has little merit in measuring the true health of a community. The US misdirects a lot of resources towards the “big and mighty” but there is so much power in the small and local.
Instead, the true measure of a healthy community is one that embraces its imperfections and supports, connects, unites and invests in its residents and resources. A resilient health community admits they cannot solve these problems only “top-down” and isolated from neighboring regions. A resilient and humanized health community focuses on the way its citizens respond to issues, not just solutions. They prepare for uncertainty and ACT toward a better tomorrow.
These ideas are not new. They come from indigenous ways of life and emerging permaculture principles: it’s important that we take more personal responsibility for our own well-being. This includes a wide spectrum of approaches to health care outside the conventional allopathic systems. We can’t prevent illness and injury, but we can prepare ourselves, our community and our systems to better adapt to changes, impacts and threats. We can build a resilient, humanized health system that serves everyone equitably; one that is affordable and culturally appropriate. It begins with each and everyone one of us taking personal responsibility by eating healthy, local food, and moving and exercising, and engaging in stress-relieving activities.
I believe that I lived in fear for much of my 44 years of life. This diagnosis was an undeniable gift to help shake me up, make me realize my blessings, and show me that even gigantic stars can burn out. Who am I to beat myself up if I don’t get what I was hoping out of a situation? Who am I to judge my progress in life based upon the social media posts of my peers or those air-brushed images?
I think about my friend Paul and how, if perhaps I hadn’t been wrapped up in my own medical miniseries, I could have been more aware of his situation. I could have been his buoy and pulled him out of the reef of his fears, if only I had known.
I can only tell his story. And my story. And hope that someone is listening.
I feel more responsible for my life now. Despite my doctors’ insistence, I stopped taking Tamoxifen in the fall of 2017. I have significantly changed my diet and I now live and work more aligned with my purpose, thereby reducing stress and feeling more content. I practice self-love instead of self-deprecation. I feel healthy and strong again. I recently hiked to the top of a local peak with little struggle. I went in for my two-year mammogram follow-up appointment. A letter arrived afterward from my health insurance company. Six wonderful words jumped off the page and filled my heart with ease: “no evidence of breast cancer detected.”
To love oneself in the midst of crisis, to hold oneself up in the midst of defeat, to forgive oneself in the hour of despair, is one of greatest gifts we can bestow, not only to ourselves, but to the world that needs us just as much as we need it.
So, what is hidden inside of me? Love.
“Love is not written on paper, for paper can be erased. Nor is it etched on stone, for stone can be broken. But it is inscribed on a heart and there it shall remain forever.” Jal-al Ad-Din Rumi