A mirror can’t judge you
Nor can it lie,
A hung jury deliberating
In a lawless box.
On a stack of miracles
As a refugee
I get dressed for the trial anyway.
Singing, humming, bustling
Like yesterday but no chair
Awaits me at any desk, no rustling
Paperwork into the corrals
Where the palominos ran.
I’m instead looking at four walls
Painted dove gray and orange.
The mind of an orangutan
Looking at the empty crates
No more books no more tape
No more staples, no more breaks.
Water coolers generate condensation
Leaving now your conversations
Gossips of Karen’s and Kate’s
Sales pitched over the plate
By Pete’s and Paul’s and the VPs.
Why I’ve never smoked
But I now show signs of
Someone older with a gash
Between my eyes
As though a killer with an axe
Took me for a blind ride by surprise.
Catch your breath, still slapping
An oak desk or a glass table
From a joke we all heard a hundred times
The overripe punchlines left
A prime meridian of jokes
The longitude of laughter
Down to the frown ground into
Cleft chins and Adam’s apples.
The mirror round, a circle nothing
Special, or even social.
Sorely left concave and convex
Not beautiful but attractive
Not pretentious, but on reflection
Of one more than anything
You knew about everyone else
All the knowns and even the odds
Of the unknown futures. The past
Imperfect and Impossible still
Nothing of a future state
Meant to somebody
Who once held weight around here.
They saw your signal
At the stop sign Not a zodiac but
A night light spotting by accident
Before it happened making
A living beyond killing as a comic
The twist of a cosmic relief made to
Unsteady the hands the end of a pair
Of arms of two feet right in front
Of your very eyes moments unfolded
In sheets on a bed waiting for you
White and Egyptian. Enter with
A card key and a new friend.
She’s ready, willing like Able to Cain.
Sisyphus or Thor your
Next door neighbors. During the silent
Years you never knew me, the unicorn.
“She found her horn in the yard,”
Everyone knows. It was a joust
From beating her head against
A brick house. The place
Where now justice ahead of us
Made a left and t-boned into
The passenger, dead by impact.
Tomorrow’s special the guilt
Pie. Eaten a la mode with sprinkles.
Sailing across the bench seat into
Your empty children
Lying to you not strapped in
Tricked by slight of unhanded
Sighs of relief knowing why
The cage door open
And the bird sings yet never
Leaves. Unclipped wings don’t try
Wet with sea spray don’t dry.
Good luck take care and these
Twice a day during questioning
By a peace officer without any
Tickets to the ride to the station
Where I have the right
Go ahead make a call. What
Number - call Pi, or infinity.
Like those wild eyes I saw in the
Mirror just this morning.
Nobody has a will or a right to the truth
The mirror always lies and hangs
Me upon the wall where I got framed.
For over five years now since my de novo diagnosis with metastatic breast cancer, writing continues to provide me with a positive outlet. After a diagnosis that destroys the path before me, the disease and all of the ups and downs of a terminal metastatic cancer experience have to find a way out. Like other treatments, the personal targeted drugs as unique to us as the cancer itself, no two people approach their writing in the same way. And there’s limitless opportunities for creativity and outlets to express our emotional and physical ups and downs.
A New Kind of Journal
When the the physicians left my room at 4:30 am on March 25, 2015, I found myself sitting in a darkened room, frozen in time. Traumatized by the discovery of my condition, the world crashed at my bedside. My life’s path so clearly defined crumbled under my feet, leaving me lost. Wherever I once drove a well-lit paved highway, I now walked barefoot down a dirt road through the dark wilderness.
While it may sound rather dramatic, it’s probably not even close to the upheaval of our lives. We who once approached love and life on our terms now had conditions added by MBC. It’s like watching a very frightening movie that’s too close to real but too far away from my life as I knew it.
It’s like looking into the uncanny valley which is a human response to a robot or being that’s so closely resembles themselves it causes a repulsion.
To the uncanny valley from Silicon Valley
When diagnosed with MBC, every dream and plan for the future gets erased from the white board in a moment. When I heard the words, “I’m sorry but…” my 25-year career came to an end. How can a tech marketing career come in handy again?
In some ways this blog itself drew on years of experience. My blog prior to this Techronicity.com ended with my brief announcement of my diagnosis. However the long run had a short run, too. I grew weary of looking for positions that valued my expertise because of my age and the levels of succession I’d achieved. Only two people from my professional life remain god friends, one I speak to regularly and has become one of my best friends. She had been diagnosed with breast cancer and was fired from her role just as treatment ended. I doubt she could be as empathetic to my situation if not for her own diagnosis.
You likely know about the uncanny valley. A concept and many others should you’ve ever wondered why the tech industry attracted my attention. Yeah, there’s of course the great pay and perks like flying all over the world for work.
What would a career driven young woman who couldn’t afford to pay her way through medical school quarter one do next? Well, I leveraged my gift of gab grabbing a job back in 1993 at a telecom start-up. Stock options and a really good starting salary led to a”lifestyle.” I enjoyed my life and its contracts and my new style.
I wore black. Not because I wanted to look “cool,” but because everything matched and nothing showed stains – easy travel wear and no worry dinner meetings. I became the blonde in black ready to tear up the industry. Ready to overcome the misogyny of a male-dominated industry. I even began a speakers bureau for women with a PhD who had a boutique research firm a la Gartner. The talking male VPs and CEOs wore my skin thin.
Years later and success forgotten, my diagnosis and the subsequent collateral damage of terminal illness is like the uncanny valley. Looking in the mirror we see ourselves. Or is that really us: aging skin, hair in some bizarre assemblage of what was a radiant mane, dark spots, dark quarter moon sized swatches under each eye. Yet how can we turn away when the resemblance of who we were still exists somewhere inside of us?
The Cheshire Cat
“Alice asked the Cheshire Cat, who was sitting in a tree, “What road do I take?”The cat asked, “Where do you want to go?”“I don’t know,” Alice answered.“Then,” said the cat, “it really doesn’t matter, does it?”Lewis Carroll, Alice’s Adventures in Wonderland
In my case the shock of the diagnosis still rings in my brain like yesterday: de novo (from the beginning) stage 4 lobular hormone receptor positive metastatic breast cancer diagnosis. My life changed forever from one of great certainty to grave uncertainty. How long do I have to live? What horrific treatments was I in for? How would I pay for all of this? Where Did all the friends and family go who I thought would be here to help me? Would I become bald from chemo?
Why did no one tell me about the higher percentage of women with dense breasts being diagnosed with breast cancer – it increases your risk of breast cancer, though doctors aren’t certain why ( https://www.mayoclinic.org/tests-procedures/mammogram/in-depth/dense-breast-tissue/art-20123968 Mayo Clinic).
I’ve written about my frustration both privately in my stacks of journals and publicly in my blog. And there’s extensive studies regarding the therapeutic benefits. One such found that “expressive writing results in significant improvements in various biochemical markers of physical and immune functioning.” (Pennebaker et al, 1988; Esterling et al, 1994; Petrie et al, 1995; Booth et al, 1997).
The unknown territory caused uncertainty, fear, distress and of course stress. Yet as in all times in my life when faced with terrible difficulties, I took out my journal and wrote. While recovering from the surgical implantation of my port in my right chest wall, so began my recovery from the shock.
Recovery began with the first of thousands of words since, with phrases such as, “I will die from breast cancer.” Words like “terminally ill,” “lobular,” “breast density,” “estrogen receptor positive,” “tamoxifen,” and “chemotherapy” replaced the taxonomy of a 49-year life. There are many dictionaries containing the language of new phases, different careers, and now illness. We must learn new languages in order understand our positions in these various new territories. We become tourists with translators. Except this wasn’t a trip with a true beginning, although it has a defined ending, called “death.”
Attempting to create some feeling of control over my life and to make sense of what had just transpired after a week-long hospitalization, I left with about 40-odd written pages of notes, poems, questions for doctors, and emotional outpourings.
Journal to Blog
My journal is a safe place to express myself. No one in my immediate relationship circle could possibly understand my feelings.
⁃ Private and for your eyes only, unless you want to share – there’s no right or wrong way to impart your life in black and white.
⁃ Using a smart phone voice recording application
⁃ Artistic expression – either small format or large canvas using any kind of media you choose. Again this is personal so even if you’re no Van Gogh or Botticelli, who cares what the result, it’s your expression and yours alone if you choose to keep it to yourself.
cancerbus.com developed from my journals. My blog:
⁃ Friendships develop through the blogosphere
⁃ Twitter, Facebook closed metastatic groups, podcasts, and online places like JBBC.org give us room to share our emotions so the answers we seek may be found
⁃ I find answers to problems and to my emotional turmoil in the comments section of https://cancerbus.com/ – and it is there numerous friendships evolved
⁃ Video blogs (vlogs) such as The Brain Cancer Diaries that have highlighted breast cancer and metastatic breast cancer endurers. In fact, there’s a poetry vlog in which I was interviewed for that can be found here https://youtu.be/Q6VXxj1_i1E
Through expressive writing I was also able to reach out to others to interact and find hope. It was here I found a loving community ready to hug me virtually with open arms. And we lose each other to death – especially those of us with MBC. And the mourning is no different had I known these people, mostly women, in person. We all have found one another through what probably started with an idea or a question and quickly blossomed.
Feeling alone, with no idea of how dramatically my life would change of every kind can benefit from therapeutic writing. There’s a lasting positive effect proven with scientific evidence by journaling for a mere 15 minutes a day.
‘In individuals who have experienced a traumatic or extremely stressful event, expressive writing can have a significant healing effect. In fact, participants in a study who wrote about their most traumatic experiences for 15 minutes, four days in a row, experienced better health outcomes up to four months later’ (Baikie & Wilhelm, 2005).
By practicing mindfulness techniques, cancer patients find symptoms more manageable and less overwhelming. But defining mindfulness and finding a way to practice it so it won’t cause more stress if you happen to miss a day, find yourself running late to a support group, or in our current Covid environment, find yourself isolated and feeling lonely. Sometimes it’s very hard to keep it going. But setting manageable goals, like simply writing about one thing that made you smile today right after dinner for five minutes might start you off on a much longer journey through your day.
Looking back at my journal entries brings me realizations, sadness, and happiness to still be alive. Reflecting on what’s happened throughout the time since diagnosis is a fantastic way to bring yourself up when you feel at your lowest. I’ve come a lonjkkmg way emotionally since that time, but reading it on paper in my own words truly brings it to the forefront. I feel better for small victories I otherwise may have forgotten.
We who find ourselves diagnosed with metastatic breast cancer may keep it inside along with a wide range of emotions from fear to hope. I’ve spoken to myself, my husband, my friends, my doctors. However, that day I put my pen to paper, I allowed my emotions to flow without judgement and without worry. It didn’t take long to fill up my first notebook. This was my truth. No one can say it’s right or wrong, it’s not fit for public consumption. No one needs to understand but me.
Poetry, quotes, observations, questions for my care team, research, and notes about my visits to the many kinds of doctors and therapy appointments soon became a very detailed description of my life with MBC. The paragraphs and paged contained increasingly detailed information as the first year passed and my knowledge grew of myself and my disease.
Drugs like tamoxifen and Xeloda, abd Xgeva; scans and biopsies; genetic profiling; my push to have a lumpectomy; my request for a change of oncologist; being thrown out of my breast cancer support group because stage 4 is terminal and “too depressing;” as well as losing 90% of my friends and family – no one understood and I felt I had to keep these experiences to myself.
Yet it was there in those pages I was able to sort out my feelings. There’s a lot to say. Maybe side effects, isolation, insomnia, clinical trials, sexuality, body disfigurement, finances. There’s also healing process in those words- longing, hope, forgiveness and stress.
Sensitive to others in our world be they small or large groups of people, tantamount to writing about our own lives in a public forum entails respecting everyone’s privacy. The private lives of others when seen through another’s eyes means everything and anything out of context may get reused in unintended ways. Trust your own judgement in such matters: if you’d not like if someone revealed it, there’s a fairly good chance somebody else minds, too. Forgiveness isn’t a better strategy rather than asking permission in this case. Excuses needn’t make their way between avoid relationship. Too many seeds can grow into a poem or an essay without offending another person or invading their privacy.
The ways to express your happiness, sadness, pain, guilt, suffering and so on, hang like ripe fruit waiting for you to pluck from the idea garden. Find somewhere quiet and pleasurable for the time it takes to write. Whether you’re writing a brand new draft of a poem or a longer more scientific essay requiring research and footnotes, what inspires you to feel like putting pen to page or finger to touch screen? A stark office? An outdoor rock in the garden? A bench at the park? A well appointed sacred space in your house? The living room sofa? Where do you find yourself thinking about things deeply? When does it work for you? Mornings? After dinner? The middle of the night?
So it’s important to keep a handy notebook and writing instrument by you at all times. During six months of taxol I found myself in and out of Benadryl consciousness, yet it took my mind in some seriously rich directions. There were times the pen would go from absolutely flawless penmanship to a crooked line of pen where my hand fell off the page as I drifted to sleep. I would awaken to ink pen stained fingers and incomplete thoughts.
Groggy as the nurse unhooked my port from the IV, I’d ask for cold apple juice and a cup of ice to get me from there to the Starbucks just across the street. A cold iced coffee in my hand I’d get into the car and sit sipping slowly, waking to snap back to reality.
All Across the Universe
Writing for some is stressful. The idea of journaling should remove not cause you to feel However with the blessings of technology, or even without, theres may ways to “Journal”, all across media platforms for therapeutic writing for metastatic breast cancer. Beginning with my blog post a peer-to-peer article for LBBC to Rudy Fischman’s Brain Cancer Diaries last video and blog on poetry in which I discuss how writing has always been there for me during times in my life when I was feeling especially troubled or happy and of course in love. Like all of us our emotions run the gamut. And writing can be simply for a private journals, memories, travelogues, photography, all the way to taking things public in the form of blogs, and published books such as autobiography and memoirs and chapbooks of poetry. It depends on ones end goal.
You might find you have a story to tell. A slice of life, or a complete biography. But in no way do I suggest putting someone’s emotional health at risk by getting a lot of rejection letters. If you do want to spread the word you may wish to self publish, which Nancy Stordahl author of the blog Nancy’spoint.com did with her three books. She uses Createspace owned by Amazon. My favorite, Cancer Was Not a Gift and it Didn’t Make Me a Better Person, comes directly from her journals and absolutely gives us a very direct sense of Nancy’s healing from her own cancer diagnosis and ongoing mourning of her beloved mother, who died from stage four breast cancer 10 years ago now. Author Robin McGee author The Cancer Olympics, which I recommend you listen to her self-read audio version of, presents her making sense of the error riddled roller coaster ride that led her to a stage four colorectal cancer diagnosis and comes from her go which can add to the rollercoaster of cancers psychosocial demands but if someone wants to make that a goal by all means. I have had my share of success and failure in that area. I’m considering a self published chap book of my poetry for a toe in the water before I start my longer book, but we will see where it goes.
There’s so much to do in a day and I get pretty tired sometimes- I’ve only recently given myself permission (without guilt) to even sleep in! How ridiculous is that – but transitioning from my old life to a different life where retirement never even entered into my mind at 49 when I was diagnosed de novo – writing has always has been my life preserver. Some days it’s not the best some days those diamonds come fully formed out of the mine of my mind.
I hope you find you can express yourself – your positive and negative emotions, releasing anger, the fears, the uncertain futures, as well as the little things that bring you happiness, surprise you, and may even help to heal you.
And finally a poem inspired by my virtual friend Brian who writes some very funny stuff indeed this time about the Spork. By way of example even a pedantic elementary school utensil can become the inspiring touch point for a poet’s mind. Certainly not my best, but not everything need be perfect.
Try it: life without a spork
Like school without the dorks
Who grew into the rich
Who had to hear you bitch
As we walked for the exit doors.
Put out of great school halls
We became the inventors
While you still jealous idea preventers
Idle on the sofas and chairs
In mom’s living room while our bands
Are the ones you tap your feet to
While we create all that you eat, too.
So meet the spoons and the forks
Married and happy and still the dorks
As you sit on your fat ass
While your spouse talks all sass
And walk out on your boring life
To run away to marry Mack the knife.
Today my sister and brother-in-law took a huge risk to travel from Georgia all the way to Northern California. After collecting them from the Sacramento airport, we arrived at the house greeted by my husband and an immanent call with my palliative oncologist from Stanford. He’s a wonderfully compassionate physician. In the specialty of palliative medicine the most important aspects of a competent practitioner, aside from the obvious foundational and ongoing education in their medical specialty, includes all the nuances of compassion and empathy. Can one learn the two most important humane personality traits, regardless of intelligence? I certainly have my theories in the matter: you can fake it but not make it if you’re not sincerely so. And therein we find the art of medicine, the details of human suffering and healing.
Since she’d not met my care team I invited her to join the telemedicine appointment with Dr. H today. As a trained nurse with 40 years of experience, she’d not yet had the privilege of experiencing the graciousness of palliative medicine. And like many people – medical professionals included – she had, prior to my telemedicine appointment, only a vague idea of the importance of palliative care. It’s not simply the path leading up to the edge of a graveside with a bed in a hospice facility as the next place we lay our ailing heads before life’s end. We travel to to that great unknown and universal mystery – death. However, before we reach that great democratizer, we come in and out of pain, feel the side effects of medications and chemotherapies, as well as the psychological hardships that arrive hand in hand with a cancer diagnosis. Palliative physicians see the patient as a whole being and treat us with the tools that science provides them with but in a more nuanced way than a breast oncologist in my case. As a treatment protocol and important part of the health and well being of a patient, palliative medicine in my experience remains a mystery to most, including myself before I entered the realm of the terminally ill. Yet one needn’t be terminal to benefit from palliative medicine either. If you have some time, and I reckon with Covid still thrashing the global population, you do, a worthy use of an hour or so can be found in this conversation between Dr. BJ Miller (yes he’s very good looking) and Michael Lerner, author of the de facto book published by MIT press on integrative therapies. https://youtu.be/5YDbq7vBT-A
After our hour long video call, my sister connected the dots on her own after asking a few questions and experiencing the interaction between myself and Dr. H. She was especially impressed by his clear respect for me as a human being – gasp! an entire hour of conversation between doctor and patient – and not only a number to rush through a five minute visit with and quickly hand off to a nurse for scheduling and prescription refills. She observed the mutual respect and intellectual relationship we clearly share as “refreshing and very unique.” She added that it was “unfortunate that it’s also very unusual.”
I took some time to educate her with a brief overview of Dr. H’s role in my care, palliative medicine in general, and why it’s so important for the well-being of someone with a terminal or chronic illness: it’s not the step before hospice, although sometimes it is; it’s not only prescriptions for pain, although sometimes it is; it’s not only referrals to specialists outside of oncology, although sometimes it is.
In my follow up to my doctor, I decided to include some photographs for him since he already asked for a picture of my left lower leg and foot because I have another case of cellulitis. We also discussed my thoughts about an ooprhectomy, or removal of my ovaries, so that I might avoid the side effects of hormone suppressing medications like letrozole, which take a huge toll on my entire system. All non targeted medicines are by nature systemic and therefore so are their side effects. He agreed with my assessment of including surgery in my care plan and will discuss it with my oncologist as will I bring it into our conversation during my visit next week. Welcome scanxiety – after my next head to toe PET scan on Wednesday.
Not only lay-people, but medical professionals lack education regarding the roles of each member of an ideal care team in dealing with a terminally ill patient. Not because they don’t want to provide the ideal care, but because those specialties aren’t homogeneously available.
Pass It On
I’ll use American football as my metaphor for sake of making a longer story short. The patient ideally becomes the quarterback position and the palliative oncologist becomes the offensive line and the oncologist is the coach as well as the defensive line. We all work together to battle our way down field to reach the same goal: to have me live as long as possible with the best QoL along the way. The oncologist fights off the opposition, being the cancer itself while providing tests, therapies and other specialized oncologists to keep the patient in the game as long as possible. While we may never win, we hope to get to the super bowl and beat the odds of living 2.6 years from diagnosis. Each year is like a touch down for us. Each time we take possession of the ball without cancer scoring a point and outsmarting our medical strategy is another chance at more time. And if the team falls apart the entire game is over. A good metaphor for how we all participate in the life we pray to extend as long as possible with the best quality of life as possible.
Dr. H asked for a photo of my leg for a baseline of my cellulitis. Of course I sent it using the Stanford MyHealth application that very day. I’ve had cellulitis in the past and my sister’s opinion as a seasoned nurse concurred that indeed that is the correct diagnosis. However I thought I’d send him some more personal photos as well, since he is a very personal part of my life.
The photos consisted of the following: Simon my cat, my mascot, my side kick, my tear sponge and fur baby was in the. Simon follows me everywhere and always stays by my side when I’m not well. There were two additional photos I decided to send: the first from Jan’s 40th birthday (I was 33); the second of us at a wedding in 2014. How time does fly. I was not smoking a cigar in that photo but pantomiming the powerful act of puffing on a heater, as my ex fiancé’s was fond of saying, whose cigar it was, and my way of exerting my executive privilege at that time. In both photos my biological mother, who is Jan’s step mom. My mom died from Alzheimer’s four years ago. Too young… she was 74. Long history there for sure – Jan and I have been together since 1980. It’s been over 40 years. So many lifetimes ago yet like yesterday.
How life takes its great turns and and we walk along along its pathway together and alone, until we must change our direction or take an entirely different road to meet the moment we find ourselves.
Yet, after all, love is all we remember and all that matters as reflected in the photographs. And a life without love isn’t a life well lived, it’s a mere existence and makes no mark at all – I believe love is our true legacy. You’ll remember your vacation but unlikely that week at work you chose in its stead. Enjoy making memories with the people you love. While work seems important to us – it’s not what truly supports us.
I’ve just completed my training to host a Healing Circle. It’s a sort of support group, except no one gives advice or tries to fix anyone else, and confidentiality is a must fir giving people room to share their truth with the use of a metaphorical tribal campfire as it’s basis.
“Healing is what the person says it is. (Like pain is what the person says it is),” quoted from Michael Lerner a founder of commonweal and its cancer help program, which if you’ve read this blog for some time you’ve read of my effusive respect and through which I’ve found my own personal style of healing.
In healing circles people take take the risk of being vulnerable, just as I do with my palliative oncologist- and this is a very difficult emotional task to say the least. I feel accepted, no matter the content of what I share, no matter the emotion I express. I see his capacity to be truly present and know me as a whole person, and the good and bad experiences of my life. I’m inspired by our talks to express myself regardless of the situation. And in his listening he’s able to treat me with respect and care.
I wish more physicians and more oncology practices included palliative care as a part of the team. I hope you find some guidance in what palliative medicine truly is – not the fear of the call I first received about five years ago when I was first introduced to my original palliative doctor. I was so frightened I was closer to death than I originally thought, but not so. The nurse who called to schedule the appointment was just not adept at creating a safe space by explaining what palliative really meant and that it wasn’t the last stone in the path before my grave.
I couldn’t have been more afraid, but today I owe my health in so many ways to the five physicians who have been a deep part of my life and my healing. I cannot thank them enough.