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.
Well, I showed up for my appointment, and panic hit as I walked through the door of the exam room. It was like time slowed and a switch flipped, like trying to stream a movie in HD with all the roommates using the Wi-Fi, and then the power goes out. I rambled all my worst-case-possible -scenarios to the doctor that comes to gauge my state of being before seeing my gyn-oncologist. She listened to my many concerns, helped me parse out what I needed to share and what was out of proportion.
And then I waited, and waited, and waited, and tried to sort myself out. Then finally, I saw my oncologist. She listened to my panicked concerns and assertively countered my panic with reassurances that I am “doing well”. I left the appointment feeling that I was panicked for no reason, and I was unhelpful during my UCSF appointment. I think that my doctor must think the worst of me - that I am the overwhelming reactive patient that blows things out of proportion, and that she has more important emergent patients to deal with. I am wasting her time. The tension of panic fills my lower abdomen, as I write this story. This is the story I build in my head as I leave my appointment.
Humans are hardwired for story, and this is the story I am telling myself; this is my shitty first draft. This is the story that I make up to fill in the missing data points to control uncertainty.
But the story can be rewritten.
I showed up to my appointment with all my concerns; I was open, honest, and vulnerable. I showed up and laid bare all my fears because cancer still strikes fear in my heart. Logically, I know I'll be in amazing hands if I ever experience recurrence. Yet, my brain wants to follow the conditioned pathways: thinking and ruminating. I fear recurrence because I enjoy my quality of life. I fear weight gain because of not knowing what caused the cancerous growths. I fear uncertainty because I was not fully staged during my operation.
My story can still be written; this can be the beginning, middle, and end all wrapped into one.
Sharing my rewritten story with others who share my concerns showed me that I am “OK”, and my appointment went well. I still feel a bit off, a bit distracted, and unmotivated. I am tired, but I am following through. I’ve been reminded that I may feel like UCSF isn’t paying close attention, but I have the agency to speak up. I have a spectrum of support. I can email and reach out with my concerns. I can follow up with my primary doctor with other health concerns. I can make small changes along the way for myself. And I am.
I already scheduled my appointment for next year. I’ve “graduated” to yearly appointments with blood work every 6 months. Oh boy was I surprised when the appointment coordinator reached out to schedule the appointment with NP Brigid P, instead of Dr. Chen. I was upset that I was not informed of this change in my appointment and that I learned about it through a scheduling email, instead of being told in person. My brain and heart immediately jumped to the conclusion that Dr. Chen does not want to see me because of my panicked state, but I don’t know that - it is an assumption. She is confident in my progress and in NP Brigid, and I do know that.
Not all health concerns are life-threatening, but for the past several years they have felt pretty darn close. I am still figuring myself out. I am unlearning and healing 30 years of conditioning, trauma, and pain. I celebrate that I have come a long, long way in the last five or six years. It's hard enough to survive cancer; I don't need to be harder on myself, but I do need to rewrite my story.
Prompt 1: How did I get to this version of me? What is the story I tell myself? Is this the beginning, middle, or end of my story?
Prompt 2: Gratitude writing from The Story You Need to Tell by Sandra Marinella, MA. Gratitude writing is taking the time to regularly express what you are grateful for. Our brains recognize the pattern of story “the beginning, the middle, and end”, so when we practice gratitude writing we are helping hardwire our sense of safety, health, and overall well-being. Write about what you are grateful for today.
Writer's Feedback: The Story You Need to Tell: Writing to Heal from Trauma, Illness or Loss by Sandra Marinella, MA, MEd.
“There is nothing so wise as a circle.” - Rainer Maria Rilke
Thank you all for your understanding of my absence last month; I needed a mental health break. I am grateful for the safety of your patience and compassion. Last month, I was overwhelmed by fires, covid, and the newest report from the Intergovernmental Panel on Climate Change.
This report finally links climate change and human activity and issues a dire warning that we must act now if we hope to change this trajectory. We are an impetus of imbalance. As cancer patients and survivors, this is not news to us.
The report strikes a deep trigger that is already primed by fires and the pandemic, and what is wired together fires together.
My experience with cancer and climate change is a deeply linked trigger. I grew up with a strong intuition of what we were and are doing to the Earth and each other. Cancer and climate change bring up overwhelming mixed feelings of depression, sadness, disappointment, anger, and rage. This overwhelming nexus of emotions can send tension through my body, cause jitters, nausea, and disorientation. My head will swoon, and my heart rate goes up.
It's that time of year too; time for a checkup at UCSF. Thoughts of reoccurrence creep in and little things set me off. I am primed for triggers that distract me from the present. I remind myself that I am here now. I am human and I am not alone. I am here to share, to observe, to learn, to heal. I remind myself that I manage my stress (not the other way around), I contribute to my community, and I work to help heal our relationships with each other and this Earth.
Writing with you all is such a gift and I'm excited to share The Story You Need to Tell: Writing to Heal from Trauma, Illness or Loss by Sandra Marinella, MA, MEd.
One of our writers (Judy) and Madelin from BGHP shared this online event with me, and I'd like to share what I gained. The most valuable information I garnered from this online presentation was the wealth of neuroscience-based evidence validating the healing we experience through writing. Also, I am eager to share the writing exercises that were discussed, as we continue to narrate our own stories and share in this healing experience of creative expression.
- Freewriting - journal away! Writing in your own way. Release and catharsis through doodling, drawing, listing, poetry, narrative; let the writing flow. Sandra recommended that you fire the inner critic and get to writing.
- Challenge writing is writing through or about difficult experiences by engaging in expressive writing. Sandra offered studies validating the healing power of this style of writing by Dr. James Pennebaker.
- Reframing your story. Sandra shared a beautiful example of this from one of her writing students. She described a brother who really loved his sister, whose own story was full of struggle and difficult life choices. He reframed her story in a way that helped him to realize his sister was determined to make her own choices. Try this exercise by authoring your own story, describing in detail what you experienced and what was felt. Then, reframe your story with gratitude and positive memories that you can reflect and learn from.
- Positive writing centers us on the good and meaningful things that happen to us. Sandra shared writing from Jen Campisano, author of the blog “Booby and the Beast”. Jen used positive writing and narrative therapy throughout her diagnosis and treatment and shared her journey in her blog. http://www.boobyandthebeast.com/
- Gratitude writing is taking the time to regularly express what you are grateful for, which ingrains and deepens the practice. Our brains recognize story, so when we practice gratitude writing we are helping hardwire our sense of safety, health, and overall well-being
This month’s theme on our Healing Journey is Death and Rebirth, writing about feelings of death and life. I know it is a bit strange to through in here at the end. But I want to make sure we can write on this theme.
Prompt 1: Freewriting: doodle, draw, make lists, pro vs. cons. Write poetry, craft a narrative; let loose.
Prompt 2: Reframe your story. Tell us a story: start by writing the story exactly as experienced, then reframe with gratitude, positivity, and lessons learned.
Entering the Inner Cave - Approaching our Inner Self
Holistic care has provided me with a new understanding of “self”. I’ve accepted I will experience different forms of healing as I continue my life as a cancer survivor. The World Health Organization defines health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”, while wellness is defined as “the optimal state of health of individuals and groups” and is expressed as “a positive approach to living”. In our group, we’ve experienced and shared many aspects of individual wellness and how each is interrelated to each other: emotional, intellectual, physical, social, environmental, financial, occupational, and spiritual.
There are days when I feel I am surging upward in all aspects of my health and individual wellness. And then there are times, like this week, when I feel the weight of our reality. Not just our reality with cancer. The reality of the larger picture. My brain is hardwired by the negativity bias to remember negative, harmful events and situations, while positive mental and emotional progress needs reinforcement in my mind. I become depressed and dismal, like any other person with a firm grip on reality.
However, I’ve learned to cheer myself on and hack my brain’s motivational mechanism. Our brains are also hardwired to seek pleasure, avoid pain, and expend energy efficiently. I learned I can mentally reward myself for engaging in healthy behaviors, such as practicing mindfulness and making healthy choices, to recondition my brain to default to healthy choices and behaviors. But, as I’ve said in the past, this is work. It does take consistent conscious effort. I’ve learned to not be so hard on myself, and recognize the “good” and soak it in. I don’t make excuses for myself and I don’t live in naivety, instead, I make a conscious effort to cultivate everyday wellness in my life.
Moving Toward Self – turning my dreams into my reality
I’ll admit, I’ve got some lofty goals. I really want to make my own home somewhere between the coast and the mountains, near the giant redwoods that I love. Land with plentiful sunshine for veggies and fruit trees. A mixed microgrid of solar and wind power. A community farm and communal living.
My household has a goal of being at least 50% sustainable by 2025, and I have grand dreams to get us there. A native food forest: permaculture to feed our bellies and soil. River and land stewardship for the rest of my days. These are the dreams that make me feel whole. This is the dream of my Vital Self.
But what do I need to get myself there? I am at a point in my journey when I dare to dream of a future. I have a sense of purpose, a community I contribute to, and I feel fulfilled by giving of myself. I want to help heal the land and our relationships.
Because of cancer, there was a time when I was physically too weak to even dream of doing this work. Then, education sustained me, and I was supported and encouraged to take all the time I need to heal physically, emotionally, spiritually. I sought help for my mental health too. I navigated therapists and support groups, finding many paths to the treasure trove of coping tools I utilize.
However, my financial situation needs attention, especially if I am looking to buy a home and steward land. I admit I have foregone my medical debt long enough. I have not been in the position to pay it and I really do not have the income to pay it all at once, but it is time to craft a strategy.
I already reduced some of my medical debt related to my time in the hospital due to cancer and the bowel resection afterward. In 2019, I worked with my local tax preparer and applied for financial assistance from St. Joseph’s Hospital in Eureka. Most of my medical debt from that time was forgiven, and a huge burden was lifted from my spirit and body. It was life-changing; reading the letters from St. Joseph’s filled me with hope and gratitude.
Last year, I paid off my therapist who I stopped seeing suddenly. I was so proud of that final payment. And now, I am making small monthly payments to UCSF. I am doing what I can, so that is my strategy for now. I cannot stress myself out over medical debt, but I can take small steps (and make small payments) when I am able.
Nothing to do but live…
So, I am working on it. I am leaning into all aspects of my individual wellness to create change in my life and pursue my dreams. I am all too comfortable knowing I have only one life to live, and by golly, I want to live it. I see the challenges before me and my global community. And yes, it is daunting most of the time, but something won’t let me give up, even when I come close to that line, even when my heart hurts for humanity, the planet, and what we’ve done to ourselves. I cannot think of any other time that I would rather be alive than right here, right now.
“Look past your thoughts, so you may drink the pure nectar of This Moment” – Rumi
Prompt 1: See your vital self, your true self, or your future self. See where you want to be. See your needs being met. Where are you in this vision of your vital self? What do you really want?
Prompt 2: Take stock of the process. Identify changes; changes to make, changes to keep. What will help you get to this vision of yourself? What values, strengths, lessons do you carry with you now that will help you on your path and in the future?
Finding Meaning in Change
Cultivating post-traumatic growth
Last month we wrote about crossing the threshold in our healing journey, accepting change in our lives, and finding traction along our path. This month we will write about living with changed conditions and how our beliefs shape our path.
Some days I feel sprung with potential, as an Olympic sprint runner crouched at the starting line, well-trained, capable, excited to run the race. Then there are days when I stay in my PJs all day, not answering phone calls or emails, leaving my phone on do not disturb. But increasingly, I am finding a balanced step, like the recent backpacking trip I took; I feel enduring, full of strength, and mindful of my body and surroundings. This is where I want to exist, this is where I need to exist – in that state of balanced calm.
I realized on this backpacking trip how often I over-extend my step to keep up with someone else’s pace. It may seem like a small, unimportant observation, but when I apply this simple thought to my life experience, I notice a pattern – how I have literally over-extended myself to my own detriment. I have tried to keep up with others rather than taking the time to find my own pace. I have tried living up to the expectations of others for so long, that I am conditioned to do so. What else am I conditioned to believe? What have I conditioned myself to believe?
After I realized this, I changed my pace to fit my stride. I took what I learned in last semester’s adult ballet classes and applied it to finding balance and grace on the trail. I had such an incredibly profound experience on this trip, a fundamental shift in my beliefs about what I am capable of. I validated my own sense of survivorship.
During this (incredible) trip I had plenty of time to think about the changes I have experienced and explore my depth of feelings. I allowed myself time to feel the expansive nature of my awareness - how I can focus on my breath and how I automatically sense for danger all around. And I found that centered pause of “now”.
A fundamental shift
How have I got in here? It certainly was not overnight, and it certainly was not easy. To use a banking metaphor, I have been making daily deposits in my personal account of self-improvement, accumulating compounding interest over time. In past sessions, I have shared my experiences in therapy and some of the tools I have picked up along the way. In this session, I would like to describe a few of the coping tools I have used and how I have found meaning in reconstructing my life.
I needed to do something different to shake myself out of old behaviors, habits, and thought patterns, so I chose to cultivate change. I began observing my thoughts, feelings, and beliefs about my experience. I acknowledged my limiting beliefs and the conditioned beliefs imposed on my experience by others.
I started with small, easy changes. I changed the way I soaped up in the shower. I drank less coffee with a new plant-based creamer. I stopped eating sweets after 7 PM. I exercised a little bit every day. I downloaded a beginner’s meditation app and completed the program twice. I found I do well with small increments of daily meditation and regular exercise, checking a little box to hold myself accountable and celebrating the fact that I am consistently doing this for myself.
The right tool for the job makes a world of difference
Meditation I surrendered. I found a meditation app for beginners or anyone struggling with meditation, habit-forming/breaking, and mindfulness. For 42 days I used the app to meditate daily, regularly observing and experiencing my body, my thoughts, and feelings (I completed the 21-day program twice). This is a huge deal for me, as I have struggled with meditation in the past. Now, I use meditation as a helpful tool for engraining a daily mindfulness practice, creating new healthy habits, and rewiring my neural structure.
I enjoy meditation now that I know that it is perfectly natural for the brain to think of ALL the things. I feel empowered and capable of meditating daily, rather than intimidated and wondering if I am doing it right. Other helpful tools for challenging limiting and conditioned beliefs are cognitive-behavioral therapy, which is a form of talk therapy, and the CTFAR Model which I learned about in a wellness program.
Cognitive-behavioral therapy (CBT) is a way of changing one’s thinking by using awareness to observe emotions, behaviors, thoughts, and physical sensations. Limiting beliefs are unhelpful thinking patterns that we tell ourselves, or that we have been told and repeat to ourselves. For instance, all-or-nothing thinking, overgeneralization, ruminating, disqualifying the positive, jumping to conclusions, mind-reading, catastrophizing or minimizing, and “should” statements. The confirmation bias validates these thoughts and perpetuates the limiting and condition belies.
Cognitive-behavioral therapy is a tool to label and challenge these thoughts and beliefs, cope with the emotions they can elicit, and identify triggering behaviors or events. Sessions with a therapist specializing in CBT can provide results over time and generally focus on current events rather than childhood experiences. I learned to use this tool outside of therapy. When I catch myself following these rather common and unhelpful thinking patterns, I actively challenge these thoughts by asking myself questions about the trigger, labeling the unhelpful thought patterns, and checking my emotional reaction. This process allows me space to feel and time to think.
CTFAR Model Another tool to cope with limiting beliefs and manage stress is the CTFAR Model, which is an acronym for C - Circumstance, T – Thoughts, F – Feelings, A – Actions, and R – Results. I use this tool when I am triggered or having a panic attack. I find this tool also useful for coping with deeply rooted limiting beliefs and conditioning.
Using this tool, I can give myself time and space to respond, instead of immediately reacting to triggers. I observe my circumstances, looking at the facts of the situation – what is happening. I acknowledge my thoughts – my over-reactions and my reasonable responses. This is when I can empower myself. This is when I can choose what thoughts I need to cultivate. I engage my emotions to help connect to my body and depth of feeling. We, humans, respond most to our feelings, our gut instincts. I have an abyss of emotions and can feel many ways at once. It takes time and space to sort all this out. Often, I find myself journaling about my feelings to put my intertwined thoughts and feelings on the page, to separate them out and make sense of it all. Next, I decide my course of action or inaction. Do I want to open my mouth and insert my foot? Or instead, do I want to listen and respond with well-formed thoughts? Choosing my battles has been quite the lesson to learn. Finally, I consider the results. How will I feel when this is all said and done? What will I impact with my words if is said … right now?
Celebrating consistency and healing trauma
Often, I have said healing is work, and these tools are hefty ones. I need to use every ounce of my self-discipline and pat myself on the back to keep a consistent practice, and all this work is yielding results.
I am experimenting with new conditions as I continue to rewire my traumatized brain and body and heal. I am engraining healthy choices by changing my behaviors and creating new habits. I continue to take the next smallest step, just a little bit each day. Most importantly, I celebrate that, today, I am on this path and that I can share it with you. Today, I am taking the next smallest step, knowing I can navigate the path before me, one step at a time.
Prompt 1: What limiting beliefs have you experienced? Which are internal? And which are external? Meaning, what do you believe about yourself, as opposed to what other people think about your experience? How do you counter limiting beliefs? What limiting beliefs have you overcome or navigated because of your experience with cancer?
Prompt 2: What questions do you have about your experience? What changes are obvious to you, but are oblivious to others? How do you make others aware of those changes? How do you counteract feeling invisible? What do you do to feel seen?
A Different Approach
I would like to try a different approach to our group’s meeting format. I will still read an engaging piece to set the theme of our session, but I would like to start incorporating more of what we’ve written and/or share inspiring writings from other writers we come across.
We will review at the end of our session, to get feedback about this slight shift in format.
So, without further ado, I’ll jump right in. Do you have your notebook and something to write with?
Prompt 1: Check-in with the group. It really seems like ages have gone by. Write about life! What has changed since we last met in April? How are you facing the challenges and uncertainties of “reopening” and the burgeoning summer? Where have you had to adapt? When did you have to pivot or be flexible? What has been in your heart? Or do you have news to share?
Prompt 2: We were derailed by cancer, and now by COVID-19. The uncertainty and challenges that come with both have a variety of impacts. Yet here we are. What certainties do you seek during challenging times? Where do you find refuge? Who or what reminds you of who you are? How do you cope with the stress of uncertainty? When do you notice the effects of this stress?
Celebrating our Mentors
My heart is heavy with the news that our dear friend is in hospice. This news triggers multiple overwhelming emotions: sadness and fear, empathy and sympathy, and a loss for words. I want to honor these feelings and reach out to tell her how much she means to me. Tell her how much I’ve learned from her, her stories, her vivaciousness. I admire that she learned to use denial, wielding it knowingly when she needed, yet recognizing it for what it is.
I fear of my own death. I fear I will die before my time. I feel this diagnosis is a delayed death sentence and that I am racing against the clock to just live authentically.
And live I must!
Anger boils then, deep in my heart. The “why!”. The longing for an ideal world. The world where we heal the sick, where corporate greed doesn’t kill people. A world where everyone has access to high-quality healthcare and nutritious organic food. A world where people do not die of cancer.
Like I said, multiple overwhelming emotions.
I avoided sitting down to write this out. I got the news at the beginning of March and here it is almost April. It hurts. It’s heavy and it drains my energy. It distracts me and draws me in. I worry that I will see writers come and go and know I will feel the weight of grief every time.
I am still learning to cultivate the strength to face my pain and the wisdom to honor my vulnerability. I’ve searched for my mentors when I didn’t know that was what I was doing. I’ve reached out for clarification and found validation. My fellow writers, my kin of the pen.
I’ve found the strength to state my truth, to be undeniably me. I’ve been uplifted by your words, metaphoric magic, and reflections of resilience. I’ve learned to take inventory, to observe, and to stand witness. I’ve learned to let the release happen, to stain my pages with tears, and take up the pages with scribbled screams and terrors of my heart.
I’ve been given the gift of perspective, each writer showing up just as they are, bringing authenticity and honesty. We don’t lie about our reality here. Here, we ground down and sink in.
I give my heart and hands, my deepest hurt and my highest joy. I’ve shared my rawest self and my professionalism. I’ve given my best to you. I give my whole self to you. My mentors are you strong and vulnerable. My mentors listen and receive without judgment. My mentors give their realness, and they give without asking for something in return.
Prompt 1: Who are your mentors along your path? What have they taught you? What qualities do you admire? What gifts have they brought you? What have you shared with them?
Prompt 2: Write to our friend and fellow writer. Or write to one of your mentors. Write to another survivor who helped you see your own strength and vulnerability by sharing theirs.
Coping with Stress that comes with Change
Hello Writers, spring is in the air...
And for better or for worse, change is all around. Like the cycling of the seasons, change has become an expected part of life. Along our journey, we learn to lean into change and accept uncertainty. Our experience informs us that not all things go as we plan. We have learned how to adapt to incredible challenges as they arrive, yet still, be genuine to our deepest emotions.
As in gardens, we can plant our seeds and tend our soil, but we still have to pull the weeds and watch out for the slugs. We can tend our metaphoric mental garden as we tend to real gardens, with diligence and mindful monitoring.
Exploring The Hero’s Journey – Resistance to Change
I grieve the parts of myself that I felt I lost. Sometimes I find myself mulling over how much I have changed because of cancer. Getting lost wondering how things may have been different if I had not been diagnosed. I become frustrated with myself when I feel things used to be easier or less challenging before cancer. I get mentally stuck thinking that I am less able to do something or unable to handle life’s challenges, as well as I did before my diagnosis.
At times, coping with the fall out of cancer has been physically and mentally challenging. My “new normal” includes heightened levels of anxiety with panic and post-traumatic stress. From the tension that comes with how my mind leaps from one worst-case scenario to the next, to the spinning sensations of overwhelm. It can be draining to constantly question my capabilities while trying to counter-balance my feelings of inadequacy with a healthy sense of my genuine potential.
It can be more than a little disheartening to wonder if things will ever get back to “the way they used to be”. These feelings are understandably normal responses to an abnormal situation.
But then I realize, I do not want to go back to the way things used to be.
Post-traumatic Growth - “Sometimes the only way out is through”
I am continually observing and learning how stress affects my body and paying attention to my warning signs of physical, mental, emotional, and behavioral stress. Since my diagnosis, I’ve recognized that my baseline stress response has been in a constant state of fight-or-flight activation for a large part of my life. My diagnosis kicked this sympathetic nervous system response into overdrive, a normal psychological and emotional response to this deeply disturbing event.
“The way things used to be” was really living in denial and avoiding deeper issues triggered by my cancer diagnosis. Expecting myself to return to “the way things used to be” was limiting my healing process. Denying my trauma was perpetuating my limiting beliefs and causing chronic stress. I thought that I needed to focus on positivity and living in the moment, but I was forcing a narrative that was not addressing deeper issues.
Healing is Work!
I reviewed my personal expectations, beliefs, values, and attitudes. I stepped back and observed my thoughts with mindfulness, instead of self-criticism. I learned to give myself the same compassion I show others. I reached out for professional help from therapy and psychoncology. I joined peer support groups to be surrounded by safe and trustworthy people going through similar experiences. I learned new ways to cope with chronic stress. I made adjustments to my daily routines to take time for what I need. I developed new practices and cultivated healthier habits. And I learned I can trust in help from allies when I need it. I accepted that some things need to change and that there are some things that will always be a fundamental part of who I am, from which I can draw internal strength. I created a new relationship with myself and my difficult past, so I could heal my present and cope with the stress that comes with change.
For me, this is way easier said than done and it takes constant practice! And I mean constant practice and a bit of gentle self-discipline. I know that with practice I will cultivate a responsive mindset, rather than reactive, to stress. In this state of mindfulness, I can observe my inner dialogue and conditioned beliefs without judgment, adaptively monitoring my thoughts and feelings to return place of meditative calm.
This month we will write about coping with stress that comes with change. We all have experienced resistance to change in different ways. We hold on to what we know, comforted by the familiar, challenged by how hard it is to change. But as we’ve learned, sometimes we have to make changes in our lives to heal.
Prompt 1: What did you believe cancer would change about you, your relationships, your future? Have any of those fears manifested or come true? How? What do you feel would be different, good or bad, had you not been diagnosed with cancer?
Prompt 2: What did you refuse to let cancer change about you? What haven’t you lost? If anything, what have you gained? How have you survived with change?
Impacts to Intimacy
Speaking up about Sexual Wellness - Silent No More!
Fortifying confidence and intimacy through our self-expression.
Several factors may impact our sexual wellness throughout our experience with cancer. These factors often are biological, psychological, interpersonal, and sociocultural in nature (M., J. et al.2012, UCSF SWG 2020). The body changes from treatments, surgeries, and fluctuations in hormone regulation. Psychological impacts related to desire and “readiness” decrease motivation and self-confidence. Impacts to relationships (past and present) flare-up in unforeseen ways. Norms, taboos, and social expectations weigh heavily on our hearts and minds.
Conditioned to Tolerate the Unbearable
As women, we can silently tolerate unbearable pain. For a large part of my life, I ignored signs that should have alerted me to an underlying problem. The pain I experienced with my period was abnormal. My roller-coaster emotions and dry soft tissues signaled the dysregulation of my hormones; another red flag ignored. I even disregarded bodily signs of hunger, thirst, and “slow-down”, as I tried to keep up with the house, school, work, and gardens – chasing the false ideal of the perfect productive woman. Underlying all of this was the emotional fallout of my own complex trauma. I was so indoctrinated by the myths of sexuality and intimacy that I could not talk to my partner about my painful relationship with my sexuality.
My self-expression and human experience were limited by the beliefs, values, and attitudes I had about my own sexual wellness.
Challenging the Norms
Strategies that can address sexual wellness holistically include talking to our doctors and each other about our experiences and symptoms, getting to know our bodies, working on clearly communicating desires and expectations, and healing unrealistic norms by challenging taboos about intimacy.
I hope to live in a time in which more people come together in solidarity to speak truth to their experiences. I am inspired by support groups, like our Young Women’s Support Group, that facilitate conversations about our experience as women surviving cancer. I still smile internally remembering the YWSG meeting in which I boldly and enthusiastically announced “My vagina works!”. Through my network of support, I gained a deeper understanding of my own sexual wellness and benefited from engaging in activities that promote body positivity and intimacy.
Talking to other women about our experiences and diving deeply into our hearts to illuminate those limiting beliefs and attitudes directly challenges these norms. Connecting with a deeper sense of intimacy challenges taboos and expectations and allows us to be authentic. Expressing ourselves authentically fortifies self-confidence and sustains intimacy in all our relationships.
Prompt 1: Connect with yourself. Consider the four factors of sexual wellness: biological, psychological, interpersonal, and sociocultural. How have these factors manifested in your life?
Prompt 2: Identify activities that create intimate space for yourself. What can you do for yourself to connect with your body and the things you appreciate about it, i.e., take a relaxing bath, wearing clothes that make you feel good, painting, gardening? Use this list as a “go-to” and challenge yourself to intentionally set aside time to do one of these activities.
Dive deeper: Connect with your partner or other intimate relations. What do you have to offer each other? Identify activities of shared intimacy, i.e., volunteering in your community, making dinner together, savoring conversation.
M., J. et al. "Sexuality And Intimacy In The Context Of Cancer". Topics In Cancer Survivorship, 2012. Intech, doi:10.5772/25063. Accessed 4 Feb 2021.
Survivorship Wellness Program, UCSF Helen Diller Family Comprehensive Cancer Center: http://cancer.ucsf.edu/support/survivorship-wellness/, 2020
By my very nature, I influence those around me. Not by attitude or action alone, but through authenticity of self, I may empower others to be better versions of their own humanity. -Jen Hildreth
I have labored to regain momentum in my career post-cancer diagnosis and treatment. In 2019, I graduated from HSU with honors by my strength of will. Now, almost two years after graduation I still feel like a ship without a rudder, navigating the muddy waters of my mind, seeking smooth sailing. But cancer has taught me the waters will rise and fall, the navigable course is sometimes unseen, and I must steer with faith in myself. I am constantly asking myself “what am I capable of?” to reframe the thoughts and feelings that I am incapable and inadequate - I know that is the brain’s negativity bias, and I am validating my strength and potential by turning the kindness I show others toward myself. (Hanson, 2013). If I see all this incredible potential in our collective humanity, how do I see that potential in myself?
I’ve always struggled with embracing my authentic self. As a little girl raised in the Deep South, I was expected to be so many things that I did not feel was who I am at my core. My father expected me to be a pious preacher’s wife. Anytime he asked me, “what do you want to be when you grow up?” I knew at the age of 6 he expected me to say, “a preacher’s wife”. As I aged into a pre-teen, he and other men in the church decided to choose a husband for me. Naturally, I rebelled and questioned why any of this was expected of me. Later in my adulthood, I finally began to question all these expectations of other people and recognized that I struggle to be myself because I did not know my authentic self. My authentic self was blanketed by expectation and shrouded by the society and culture of the Deep South and an unhealthy family. It was like looking for my reflection in a tarnished aluminum can. I was never going to see my authentic self if I continued to view myself through these expectations. I had to pull back the layers of trauma, conditioned behaviors, and limiting beliefs for internal analysis, self-growth, and healing.
Cancer stripped away so much of my desire to live up to other people’s expectations and forced me to acknowledge the trauma I endured as a child and how it impacted my adulthood. I started asking myself: when all barriers, judgments, and past traumas are stripped away, who are you? What motivates you to get out of bed in the morning? I know I am a kind person that treats people the way I want to be treated – with love and respect. So often I freely give my love and respect to people around me, but it has taken a concerted effort on my part to give this level of love and respect to myself. I am learning that I need this feeling of validation, especially now.
Wholeness of self – knowing who you are helps you embrace all the parts of who you are and helps you take care of yourself. No one else knows you better than yourself. Through the therapeutic work I have completed with UCSF and Psychoncology, I’ve learned about the mind-body connection. Mind-Body Therapies are effective means of directly influencing stress and wellbeing through integrative mindfulness techniques and are used to help people cope with a range of mental health issues (Williams, 2016). By knowing your whole-self, you may heal.
“It doesn’t matter today that the mind-body connection is invisible because at the molecular level it isn’t. There are enough chemical cues to convince anyone that mood, beliefs, expectations, fears, memories, predispositions, habits, and old conditioning – all centered in the mind – are critical to a person’s health. … Among the processes that can be influenced by a person’s awareness, healing is one of the most vital.” (Chopra, 2018).
During these strange times, I’ve had many opportunities to reflect on my past traumas, how cancer impacts my current state of health, and what grounds me in my authentic self. There have been moments when I felt like I was drowning in an ocean of our shared pain: self-doubt, confusion, rage, disappointment, sorrow. Yet I know there is a beacon of light that shines within us all.
Prompt 1: Write your preferred name in the center of your page. Make it as large or small as you feel necessary. Fill in the surrounding area with words or symbols that describe who you are. Are you a survivor? Yes, of course, you are, or you wouldn’t be here! But what else are you? Strong, fierce, resilient. Are you a bookworm? Do you live for the outdoors? Are you a mother, a lover, a friend of someone? Be honest; do not judge or make excuses, let the descriptors flow on to the page. After we share, fold this page in half in your journal and return to it when you feel like you are losing sense of yourself.
Prompt 2: When do you feel authentic? Is there something that you do that makes you feel your most authentic? Describe the last time you were your authentic self. Were you challenged to speak up for yourself and set boundaries? What makes you feel grounded in your core values?
Chopra, Deepak. M.D., Tanzi, Rudolph E., Ph.D., 2018. The Healing Self, A Revolutionary New Plan to Supercharge Your Immunity and Stay Well for Life. Harmony Books, New York.
Hanson, Rick, Ph. D., 2013. Hardwiring Happiness: The New Brain Science of Contentment, Calm, and Confidence. Harmony Books, New York.
Survivorship Wellness Program, UCSF Helen Diller Family Comprehensive Cancer Center: http://cancer.ucsf.edu/support/survivorship-wellness/
Williams, Mary Beth, Ph.D, LCSW, CTS. Poijula, Soili, Ph.D., 2016. The PTSD Workbook: Simple, Effective Techniques for Overcoming Traumatic Stress Symptoms. Third Edition. New Harbinger Publications, Inc. Oakland, California.
“Life is not the way it’s supposed to be, it’s the way it is. The way you cope with it is what makes the difference.” – Virginia Satir
It's that time of year...
Holidays are typically a time of joy and celebration shared with family and friends, yet this time of year can provoke a wide range of emotions for many people. As cancer survivors, we have learned, and are continuing to learn, how to cope with our own wide range of emotions no matter the time of year.
Particularly during the holidays, we may feel disconnected from the holiday atmosphere and seasonal traditions because of our experience with cancer. For us, holidays, traditions, and expectations during this time of year may elicit a wide range of emotional responses: anxiety, distress, frustration, loneliness. Additionally, we may experience grief around the holidays as we remember loved ones that have passed, whose presence is missed. This may even be a time of the year we seek spiritual meaning and reach out to supportive religious communities or participate in spiritual traditions in our community.
This holiday season is certainly different. With the pandemic raging and only expected to get worse, many holiday traditions are rapidly evolving to endure shelter-in-place orders and reduce the number of large holiday gatherings. So this year, it’s me, the hubby, and the roommates; we will enjoy a nice quiet holiday at home, and celebrate Randy’s birthday and Winter Solstice. We will celebrate-in-place and not even worry about online gatherings.
Adapt and overcome has been the theme this year, so take a moment to celebrate our personal experiences of joy, share grounding spiritual beliefs and values, and honor grief, loss, and transformation.
Prompt 1: What are you doing with the major differences surrounding the holidays? What traditions need to change? What are you going to put into the holidays? What do you want to get out of the holidays?
Prompt 2: What are you celebrating? What personal experiences, spiritual beliefs or values do you honor during the holidays?
Cancer Care, Coping with Cancer During the Holidays. (2020). Retrieved 1 December 2020, from https://www.cancercare.org/publications/55-coping_with_cancer_during_the_holidays
Virginia Satir: Making the Psychological Connections. (1986). Retrieved 4 December 2020, from https://www.latimes.com/archives/la-xpm-1986-02-12-vw-27732-story.html
The Survivors Journey
We started this year by writing about myths and rewriting our own stories. I had hoped to explore Joseph Campbells Hero’s Journey monomyth, but the multitude of events that precipitated during this year provoked a deviation from the personal mythos theme. Now, almost the end of the year, I would like to revisit this theme by sharing a variation on this theme.
Last week, I completed UCSF’s Survivorship Wellness Program. One of the tools I gained is a Cancer Survivor Roadmap. It is not a cyclical journey, but a path towards our Vital Self. As in our Hero’s Journey, we start with our innocent, ordinary world, pre-diagnosis, and then we are called to action to endure surgery and/or treatments. The initiation process happens when we cross over the threshold of acceptance knowing there is no going back to our old lives before cancer. We face an abyss of emotions as we navigate treatment and post-treatment. We gain allies on our way; sometimes they are with us at the start or join us along the way, and sometimes they leave or pass on. We struggle, we thrive, we learn and unlearn, and we try again. We face Death and we become old friends in the way life forces friends out of enemies. We learn to live with some denial as we reach moments of breakthrough. But when do we fully reach transformation and “re-entry”? What is our reward – that we survived, time with our loved ones, acceptance of a new life?
Where am I on this journey? I feel like I pace back and forth between the pit and a breakthrough, arriving at the edge of transformation but not quite fully realizing it. I am on the precipice of self-actualization, yet I keep repeating old behaviors. In other words, it’s not so easy to teach this old dog new tricks; I am slow to accept and acknowledge my own conditioned behaviors and limiting beliefs and I feel these are important crossroads in my life. I have found myself rolling around in the pit of my despair and I allow myself to feel the weight of it. Sometimes the emotional pain I feel seems so interrelated to the larger narrative and reality of patriarchy, capitalism, and globalization that I feel ancient and tired like my soul has stood witness for long enough. I am ready to transform, yet I hold myself back by reverting to old habits. It’s hard work to change!
I have a vision of myself I am trying to achieve. I work on setting S.M.A.R.T goals and checking off the objectives to help me achieve that vision. Yet, I find myself paralyzed by the uncertainty of so many things right now. I want to be the vision of health I see, just as much as I want to see systemic change in our world. One of my guiding principles is to treat others the way I want to be treated, with love and respect, but rarely do I turn that principle around and consciously give myself that same level of love and respect.
Prompt 1: Where are you in your journey? Do you feel heroic? Portray a scene in your daily life. What motivates you to take a step into the unknown or face uncertainty? Complete the following: If you really know me, you will know that…
Prompt 2: What have you learned to value most? What wisdom are you taking in from your journey?
Allies and Asking for Help
“You can’t stop the waves, but you can learn to surf.” Jon Kabat Zinn
So much is going on in our world! I am starting to feel like I write or say that every day. I am leaning into the chaos though, with the hope that I can help shift the social narrative to one of holistic humanity in healthy relationships with each other and the Earth we all depend on. In one of the online meetings I’ve taken part in over the last month, a friend said, “I’ve heard the word community more in the last six months than I have in the last five years.” One of the many things that I have learned from our community at BGHP over the years is that allies surround us. From these allies, I’ve learned to trust that I can ask for help, no matter how hard it is, how to navigate a variety of support systems so I ask for support from someone willing and able to give it, and in doing so realized what a relief it is to ask for and receive help when I need it most.
Making any sort of request for help was difficult before I was diagnosed with cancer and is still one of the challenges I face. Even though I know I can, and need to, ask for help, I still have a hard time trusting and recognizing when to do so. It’s not that I don’t trust the people I ask for help, the reality is far from that. I have a hard time asking for help because it is not so practiced as my years of conditioned behaviors. So, when I do ask for help, I rewire my brain to trust that I have made the right choice for myself, and I transform those condition reactions into healthy responses. The more I practice asking for help with this awareness, the less challenging it will be over time.
Recently I learned about strategizing support. I need and provide different kinds of support on multiple levels. I need support from my housemates to maintain a household; tangible and logistical support to pay the bills, feed the pets, keep the house clean. I have support from friends and elders whom I go to for advice, information, and perspective. I have a loving relationship with my husband and family, and we share emotional support when we need someone to listen to each other’s pain and share joys. And I have a need to be a part of something bigger, my community because I am a social creature and I have a desire to give back. I can provide support in a variety of situations and I can respectfully request help, as to not over-extend a boundary.
Seeking allies as a cancer patient comes in many forms: self-advocacy, getting a second opinion or dealing with family issues. One of my personal favorite quotes, “some people need to be told”, encapsulates this concept of asking for help. Friends and family may have an eagerness to help, but not know how to help. We cannot assume that our family members will know what we want. We cannot expect our doctors to read our minds, bodies, and souls. We can describe changes in our symptoms, express our need for reduced family responsibilities, request medical time off, sign-up for temporary disability, or inquire about an in-home caregiver. We can ask our family members or friends to attend an appointment or take notes. We can get a second opinion, even change doctors, if we realize a change is needed. We can express what we need with respect and dignity.
Asking for help is a useful tool for stress management. Learning to ask for help has helped me change my behaviors and reduce overwhelming levels of stress. Currently, I feel a little more aware of my reactivity and understanding of my personal warning signs of stress and try to ask for help or speak up about how I am feeling. When I am experiencing stress, I respond physically, emotionally, spiritually, cognitively, interpersonally, or behaviorally, so I am developing and practicing ways to balance overwhelming levels of stress with a responding level of relaxation and mindfulness. I am grateful for learning how to ask for help; life can be challenging as it is, but to go at it alone is even more challenging. When I ask for help, I don’t feel so tense and I don’t feel so alone in the world. I know there are multiple sources of support that I can draw allies from, and I am thankful for the support that I find in our community at BGHP.
Prompt 1: When do you feel resistance to life or feelings of being jaded? What do you do when you notice the need for being fragile? How do you ask for what you really need? Who do you express feelings when you need support?
Prompt 2: Reflect on what has happened. Who is a part of your support system? Who helped/s you survive? Who helps you thrive? – write a letter of appreciation to them or letters of appreciation to BGHP
References and Resources
Jon Kabat-Zinn (2005). “Wherever You Go, There You Are: Mindfulness Meditation in Everyday Life”, Hyperion
Standing Up For Your Rights Cancer Survival Toolbox, National Coalition for Cancer Survivorship, https://canceradvocacy.org/resources/tools-for-care-providers/standing-up-for-your-rights/
Survivorship Wellness Program, UCSF Helen Diller Family Comprehensive Cancer Center, http://cancer.ucsf.edu/support/survivorship-wellness/
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