First Friday of each month, 3 – 5 PM
Support Group Description
This is an ongoing writing group that was created to help us express ourselves, listen to others, acquire compassion for ourselves and each other, and heal our bodies and minds. The philosophy behind this group is that the act of writing is healing. It is presented seasonally and occurs the first Friday of each month, is ongoing and never-ending.
This work can be soft, and it can be perilously rugged. The healing occurs when we stay in the process, feel what we are feeling, express what is there and be present for the group. There are times when you might feel like not coming, or not writing or not talking, but I encourage you to push thought those feelings and just be here exactly how you are. We try to start on time and end on time, but you know how that goes.
The group can get raw and deeply emotional and it can get scary at times. Please, always express where you are emotionally. We won’t try to change that, but change can occur when we speak honestly and share our truth.
Writing is scary. Sharing our writing is scary. Having cancer is scary. You might as well breakthrough by putting words on the page and using your voice to share. Reading your work is not mandatory and if it is hard, we encourage you to gently allow yourself to emerge as the writer and reader that you are.
"With love and ferocity – Athena Rose"
Imagining the Vital Self
Our brain evolved to be driven towards safety, predictability, and comfort and to avoid pain. As a result, the same negativity bias that helped our ancestors retain the knowledge of painful experiences, as well as pleasurable ones, now can over-react to our over-stimulating environment. Recently I read, “The brain is really good at learning from bad experiences, but bad at learning from the good ones.” (Hanson, 2013). More often than I’d like to admit, I easily slip into behaviors and habits that I am trying to change. Change requires conscious effort; it is real work to change conditioned habits, behaviors, and limiting beliefs. “Don’t try to push the river!”, my therapist would insist. If I work on awareness of the over-reaction of the negative bias and focus on how I respond (rather than react), I can lay down new neural pathways and rewire my conditioned responses, and trust myself to heal over time.
My experience with cancer transformed my self-image. At 29, I felt like I was just finally becoming comfortable in my own skin and starting to appreciate the woman I had become. I envisioned myself surrounded with a family of my own but lost that vision as I started losing my health prior to my diagnosis in 2015. I even switched my degree path because I started feeling as though I wouldn’t have the energy for children, either my own or in a classroom. When I was diagnosed, I feared I would lose my hair as many others also fear. I remember telling my partner that I wanted to just go ahead and get it over with; there were so many unknowns then, and he convinced me to wait until we knew if I would need chemo or not. I saw myself with a wrapped head and a chemo port, and it terrified me. After my surgery, my body developed an intestinal adhesion, and I was not digesting my food. I was 119 lbs. I never want to be that thin again. One of those nights, I saw my ethereal energy leave my body and head for the moonlight.
Now, almost five years later, if you were just to look at me without knowing me, you might never guess how much I’ve survived. The crow’s feet might give it away or if you catch me on a low day, but I am able to hold my head up most days. I try to be kind and gentle, but those words don’t capture what I need. I need daily reminders that the conditioning and indoctrination of limiting beliefs took a lifetime and it won’t take a lifetime to heal, but it does take conscious effort.
So, I made a bold move this week; I dyed my hair on a whim. This magical transition was made possible by my sister-from-another-mister, my roommate. Honestly, I feel like this is the hair color I always wanted, and I am so thrilled I made this bold move. “A happy change” is what she called it; a change that I chose and that I enjoy. I am allowing myself to have these moments in which I am being present and with gentle awareness and enjoying the small things, finding what I can control, and letting go of the things I cannot. I found opportunities to engage with our community during this historical time of social change and overwhelming challenges and I am figuring out how to share my gifts and skills.
Prompt 1: See yourself now. Where are you now? How do you see yourself? Who is surrounding you?
Prompt 2: Now see yourself in a state of wellness, whether that be a physical state of wellness, emotional, spiritual, financial; all these aspects of wellness are connected after all. Where do you want to be? What do you want? Who are you at your best? What gifts can you share with our community of survivors?
Hanson, Rick, Ph.D. 2013. Hardwiring Happiness, The New Brain Science of Contentment, Calm, and Confidence.
Writing Our Personal Myths
Thursday, August 6, 2020. It’s 7 PM. I am sitting down, to try once again, to prepare prompts for the upcoming writers’ group. Day after day, I feel caught up in facing only what is in front of me; I feel unable to plan and incapable of preparing as I normally can, unable to organize myself and focus on my objectives and tasks at hand. A sense of procrastination creeps in as I fall behind on things that I know I need to do. I struggle to accept uncertainty.
I have moments of joy and laughter, love, and compassion. Yet I feel I am moving through the motions of day-to-day life. There is a rumbling undercurrent in our community because Covid-19 is still a reality and the fight against racism must continue until real change occurs. I think I can move through these motions because I know from my cancer experience what it means to have to accept the “new normal” that is the current reality. I continue to fight because I see the world around me changing - I see the world and people around me struggling to adapt and survive.
In writing our own myths, we have an opportunity to explore where we come from and how much we struggled to get to where we are today. Speaking and writing about our personal myths can give us perspective and help us understand the personal strengths we have gained throughout our journey. Personally, I am empowered by acknowledging how I have healed from the trauma inflicted by the toxic family that raised me. I found solace within myself once I realized I have control over my own choices and trusting myself. Speaking about the lies, bigotry, and racism that is deeply rooted in my relatives and where I grew up creates a sense of rightness. I have learned to trust in my intuition, which guided me to a place where I do feel safe and at home, rather than listening to the negativity bias that fills my mind with all the worst scenarios. I have hope that if I continue to be the kind of person I want to see in the world, more people will be kind and respectful to each other and that meaningful change will happen.
Today, we will continue exploring our personal myths.
Prompt 1: Describe a moment of personal strength.
Prompt 2: What other personal strengths and traits have you developed because of your experience with cancer? Make a list with as many personal traits that you can think of in the span of 15 minutes. Identify and reflect on those you feel directly relate to your experience with cancer.
Independence and Empowerment
Lately, I have been reflecting on my independence before and after cancer. I have had a lot of time to think about what makes me happy, what strengths I have, and what weaknesses I need to bolster. In my search for new employment and in the context of daily challenges presented by the coronavirus pandemic, I am starting to recognize feelings of inadequacy that seem to naturally percolate in my mind. I know this is my anxiety and panic setting in - given voice by the brain’s negativity bias, as I react rather than respond to these daily challenges. The more I can recognize these feelings, the more I can respond from a place of calm strength and rewire my brain to lessen the conditioning of emotional reactivity. Before my cancer diagnosis, I was a very independent individual but disconnected from my body; after cancer, I have learned to be resilient and gained a sense of interconnectedness to a family and community that supports my healing process.
Before my cancer diagnosis, I had an academic plan, a family plan, a financial plan to pay off the IRS. I did not have health insurance because I did not plan to need it anytime soon, although I had a plan to start a family. I had a truck that I could load up with firewood or compost to wheelbarrow over a half-acre of sunny farmland. If I wanted to do something, I did it instead of waiting for someone to ask for permission or help. I hitchhiked across the country and found a place to call home, and so I planned to create a future here.
That future did not plan on including cancer.
My treatment was relatively quick and I was considered “cancer-free” after the debulking surgery/total hysterectomy/omentectomy to remove tumors coating my ovaries and check for cancer cells in the peritoneal fluids that bloated my belly. The surgery left me completely reliant on my husband and roommates, whom I consider my chosen family. My husband was (and does) travel for work, so I was heavily reliant on Mark and MarySue for post-surgery care and to drive me back and forth to appointments when my husband was not available. Removal of my ovaries shot me into “surgical menopause” with full-on bed soaking night sweats and routine hot flashes, which cause me to lose confidence in my own body. The independence, I felt at some moments, was almost entirely cut out of my body with cancer. I felt lost in my emotions and my inability to regain my health and strength.
After treatment programs conclude, many cancer survivors have mixed feelings of anxiety and freedom as we begin facing our daily lives on our own. With appointments spaced further apart and less help needed or provided as we regain our strength, life can seem like a state of limbo. Even going back to work during treatment presents challenges from facing coworkers to overwhelming outpourings of sympathy and concern when we really need things to very much be as “normal” as possible. In an article on the American Cancer Society’s website regarding the needs of long-term cancer survivors, a survey of 1,514 cancer survivors aged 24-97 in a range of 2, 5, or 10 years out from diagnosis, many survivors experienced “physical problems, followed by financial issues, education or informational needs, and personal control troubles, which encompassed needs related to maintaining autonomy and independence” (American Cancer Society, 2015).
One of the darkly ironic moments I had in the hospital was reviewing the documents for post-surgery care and the “You’ve been diagnosed with: (fill in the blank)”, After Visit Summary, which gave suggestions for what to do. “Reduce stress”, it says, “find things you enjoy, relax”, etc., and I can remember thinking, “Just how am I going to do this? I’ve been trying to do all this already”. And the answer came in reaching out to others, finding strength and comfort in spending time with my loved ones, and working on my own mental health. I found my healing by recognizing the interconnection between expressing my emotions and stress.
These days, I can respond to challenges that arise because I am actively doing the hard work to heal. It is not easy – it is definitely hard work that takes diligence but gentleness too. I must remember that I am trying to heal by breaking out of conditioned behaviors and negative thought patterns that can be so easy to slip back into that I do not notice at first. So, I take a moment, especially now, to recognize how I am feeling, express my emotions to someone I trust and ask for help. Before cancer, I could not and would not give voice to the trauma that I suffered as a child, so it was incredibly difficult to trust others and ask for help. After cancer, because I have learned to give voice to my cancer-related trauma I know I can safely give voice to the trauma I suffered as a child and I am able to accept and heal from both. I feel more independent and empowered after cancer because I learned that I am able to facilitate my own healing through my choices and by speaking up when I need.
Prompt 1: Describe how your sense of independence has changed because of cancer. What negatively impacts your sense of independence and empowerment?
Prompt 2: Where have you found a new sense of independence and empowerment? Are there things you can do or face now that you were not able to do or face before cancer? What do you need help with?
American Cancer Society, 2015. Meeting the Needs of Long-Term Cancer Survivors. June 4, 2015. Webpage: https://www.cancer.org/latest-news/meeting-the-needs-of-long-term-cancer-survivors.html Accessed 07 July 2020.
In this moment - Injustice and Cancer
The heinous murder of George Floyd by a Minneapolis police officer fanned the flames of racial injustice in the United States and sparked a global response to a fire that has burned steadily since the time of colonialism and the transatlantic slave trade. Americans that truly believe in "One Nation For All" are protesting for racial equity and against racism. Many people are beginning to understand that black lives matter because all lives matter and so we cannot progress and grow as a society (or as human beings) without fundamentally accepting our shared history and abolishing the institutionalized mechanisms of racial injustice. I am encouraged by people and protests that are challenging the status quo of inequity and questioning the institutions that perpetuate racism. I feel the need to participate in this important time in our shared history, yet my fears associated with cancer paralyze me in this crucial moment. I want to maintain my health and protect the health of those around me. I feel the need to maintain physical distancing and wear a mask in public, and I fear to be around others that will not maintain these safety measures. I also recognize that this fear I have is relatively a momentary experience, while people of color often live in a constant state of fear, overwhelming stress, and anxiety or in other words a constant state of survivor mode – which as we know is a cause of neurological harm and trauma.
According to the National Cancer Institute, access to routine medical care in the United States results in higher rates of cancer disparities between ethnic groups. Essentially, white patients are more often seen routinely by a family doctor or primary care physician, whereas people of color have limited access to routine health care and are more often diagnosed with higher-risk cancers. “African Americans have higher death rates than all other groups for many, although not all, cancer types” (National Cancer Institute, 2020). These disparities, in addition to living in a constant state of survivor mode, are a part of a larger problem that perpetuates racism in our society. I am a firm believer in treating others the way I want to be treated – with love and respect – so these facts make me angry and motivate me to challenge my own white privilege. Opening to the suffering of others helps us become more compassionate individuals capable of greater understanding and collaboration. I want to help create a more compassionate and equitable world and so, I write, and I encourage you to write; let us pen our protest, let us write our revolution!
Prompt 1: What emotions do you need to voice at this moment? How can we brave in this moment? What is needed to guide society away from injustice and racism? What can you do to help others recognize their own fears?
Prompt 2: What tools of survivorship can you share with people of color? What have you learned from your experience with cancer that may uplift and empower people of color in our community?
National Cancer Institute, 2020. National Institutes of Health. Cancer Disparities, About Cancer. Webpage. https://www.cancer.gov/about-cancer/understanding/disparities. Accessed 13 June 2020.
"Serenity Prayer - Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." - various sources
I am waiting in a virtual waiting room, at home on my computer, for my visit with Dr. Neha Goyal of the UCSF Psychoncology program. My dog-friend, Presto, is in the room with me while Mark is vacuuming. My experience in these past months of self-quarantine has been filled with self-reflection and radical acceptance. I've ridden a roller coaster of emotions as I grieve for humanity and celebrate my birthday under shelter-in-place orders. I finally feel like I am coming out of a state of shock and moving into "solutions mode". I strive to make sense of our world, to maintain rational positivity, and create the change I hope to see; yet, I know I live in an ideal world (in my head) and that I need to radically accept that there are uncontrollable uncertainties and overwhelming challenges in life. My experience with cancer brings me face-to-face daily with the facts of life that I must radically accept. I know that I must gently accept my hard truths, so I can continue to heal and grow.
This morning, I emailed my supervisor back and let her know that I am unable to return to work at Pacific Outfitters. I need to find a full-time job with health insurance in my field of expertise, whether that be ecological restoration, singing, and acting, writing, or starting my landscape design consultation business while helping start Randy's welding business. Ultimately, I know I only need to keep trying - keep working to be the person I dream of being: calm and collected, unshakeable in the rough seas. I need to continue being kind to myself while accepting and moving forward and ultimately release myself of guilt for choosing myself so I can grow the future I hope to see.
I want to stand in a forest and know one day it will be old. I want to drink water knowing it will one day hold my molecular form in condensed fog and rain upon the quietly growing forest. I want to hear the birds sing and know they will still sing their rhythmic songs to the quiet forest. I hope the ocean will spray on a beach littered with naught but shells and crab carcasses. I want the fiery anger of my soul to burn long and hot - a cosmic star burning through time - the righteous anger that seeks justice for all children of the universe.
My heart beats with the same frequency of the stored radiation burning out in Earth's core. My intuition whispers my dreams for us all. I pray we find the strength to pick up the tools of selfless self-transformation. We need to address ourselves to facilitate our own healing. We must accept we are self-aware compassionate interconnected individuals capable of cosmic levels of collaboration.
Look at what we have done divided. Now, I implore you to imagine what we can do together.
Prompt 1: What are your hard truths? How do you see yourself? What do you deny? What do you accept? What are you working on (mentally, spiritually, emotionally, physically)? What healing do you need?
Prompt 2: Write a letter of admiration to yourself. Bestow the love and gratitude you would give a loved one to yourself. Extend the gentleness and kindness of tone that you would normally take with a child or a pet to yourself.
Springtime – the Time to Reconceive Our World
“The tiny seed knew that in order to grow, it needed to be dropped in the dirt, covered in darkness, and struggle to reach the light.”
As cancer survivors, we are uniquely prepared for this global pandemic. We understand the need to maintain the calm at the center of the storm, to be objective and look at facts to deal with the overwhelming stressors and maintain a sense of focus. We know firsthand what it means to be resilient in the face of overwhelming challenges. So many people are discussing our favorite topic “the new normal” and trying to rethink how we go about our daily lives. This is truly a new spring – with this time we have, let us explore the world we want to reconceive. What can we give birth to? What do we want to see grow in our future?
Many people are taking this time to plant gardens and reconnect with their backyards. A basic principle of permaculture design (Rothe, 2014) is Nature follows cycles of chaos and balance – a disturbance occurs, then the environment reacts by adapting to the disturbance through natural processes that maintain a system’s dynamic equilibrium. Doesn’t “dynamic equilibrium” sound better than “new normal”? New normal does not capture the perilous process of figuring it out – the adjustment period – going back and forth to the doctor, the night sweats and hot flashes, the rounds of chemo and radiation, the surgeries, the unknown and the known. Dynamic equilibrium (Huston, 1994) is used in Ecology to define the “moving target” of an ecosystem maintaining homeostasis over time. In life (A.K.A Nature) things change, sometimes quickly and sometimes very slowly, yet balance of resources across a system is the goal. We know all too well how life changes and how stressful it can be, and we have strength and insight that can help us make it through this tough time.
We are at such a unique time in our human history. We have a real opportunity to plant seeds for the future to help heal our planet and help heal our hearts as we take our new reality day by day. We must know what we want. We must name it and nourish it, to create the world we want.
Prompt 1: Observe your mental garden. Observe our global garden. What is your vision for our future? What seeds for a new beginning do you want to plant? What shall you feed your soil/soul? What flowers shall we plant?
Prompt 2: What invasive and weedy mental/social constructs and ideas need to be removed from our gardens? What should NOT return to normal? What shall we give over to the compost pile? How can we remove invasive thoughts, habits, constructs, and norms? What structures need to be rebuilt? Tell us of the world you want to see grow from the chaos of our current challenging and stressful time.
Huston, M. A., & Huston, M. A. (1994). Biological diversity: the coexistence of species. Cambridge University Press.
Rothe, K. (2014). Permaculture Design: On the Practice of Radical Imagination. Communication +1, 3(1), 1-18. Retrieved 4 1, 2020, from https://scholarworks.umass.edu/cpo/vol3/iss1/4