The Myth of Positivity
Be positive. Keep faith. Have hope. How many times I’ve heard these two-word sentences. Just a simple verb and noun structure form sentences that feel far less informed than just some innocent sounding advice. Add conjunctions and a short statement of outcome and you wind up with a head full of false promises: be positive and you’re going to get well; keep faith and god will hear you; have hope and you’ll be positive and have faith in your imminent improvement. Conceptually impossible for my mind.
Yet cancer can separate the strongest willed from their confidence. Just as ending a catty comment in the swish of an arm ending with a “snap.” Hope, faith, and positivity succumb under the weight of fear, uncertainty, and doubt when one receives a diagnosis metastatic cancer with death as a prognosis. Take that FUD and pour it over a bull elephant’s excrement pile and top it off with a huge stress ball-like, bright red dye #2 colored maraschino cherry, glowing atop a stinking pile of shit. Now you haven’t an ants chance of saying “hi” to an elephant without getting stepped on and perhaps losing your short, little life.
What’s Inside Your Pandora’s Box?
Hope behaves as a very paradoxical philosophical idea, at least to my mind and especially as I embark on my fifth year as cancer thriver. If you’re wondering how or why hope has had any bearing on my beating the statistics so far? Pretty simple: I’m afraid not to have hope or I may regret not utilizing a tool entirely in my control. Honestly without hope, I’d have little to cling to for safety. I’d drown in stress filled waters and get swallowed whole by my cancer.
The knowledge of hope itself let out of a metastatic prison as a long term death row inmate. I wonder if they all look at each other, fresh out of solitary, “hey,…lookin good! How are you?” Of course, the outcome indeed may be descending upon us as we write and read. Pandora’s box (or urn) let go with the worlds evils on human kind by Prometheus, the lid shut by his brother Epimetheus. This action trapped hope inside before it could escape anyone’s understanding. Hope in this sense acts as a cynical remainder of a need to live under false pretenses. Hope, in truth then is, “the most evil of evils because it prolongs man’s torment.” (Nietzsche, Frederick, Human All too Human)
I’m uncertain if I buy into this long-held perspective of hope as part of optimism or the philosophical paradox of hope as an evil unto itself teasing us with false promises. At times I hang onto it, embarrassed since in my former business consulting career I advised Fortune 500 company executives that, “hope is not a strategy.” This is before I left the corporate world and entered the strange zombie land as others on the cancer bus, traveling together singing kumbyah and giving one another kudos for having hope.
My Hope in a Box
I do have a soft spot for old Nietzsche, the anti-feminist who feminists love to hate. But, boxes, especially antiques, of sizes fascinate me: from the wee tiny cute Limoges boxes to large jewelry boxes built by artisans from the finest highly polished wood money can buy. And little Metastatic me, with my paltry unenviable anemic collection of about 15 or so boxes. They’re really beautiful glowing candy dish colored things imbued with burgundy red, champagne pink, light pollution black. Yet the ones I own spark a certain pleasure in looking at them and placing things of meaning to me inside for safe keeping. It’s my way of holding onto the thought that there’s value to my life. Oddly I get very happy when I can add a prized find to my growing menagerie.
One such box, an Italian decoupaged keepsake garden-variety, a hinged oval mishmash of a thing, touched my heart. The cover attracted my eye with its cut out of a bird that appears like Jonathan Livingston Seagull. It’s gliding high over the ocean. The picture is enhanced and surrounded by typical gold gilt that Italian artisans used not with any economy on these boxes.
Purchased from an estate sale, imagine my delight when upon lifting the lid to give it a quick wipe down with a damp cloth, inside taped to the bottom I found an old Chinese proverb, once baked inside a fortune cookie. It’s not so much a fortune, but a meditation on happiness. The little piece of white paper with its ubiquitous blue printed Helvetica, sans serif typeface reads:
Happiness is someone to love, something to do, and something to hope for,“ Chinese Proverb.
See main blog photo for this post of the top and inside of said box
One really can’t argue with such a simple, yet profound list, like the ingredients in the recipe for achieving inner peace and harmony. I’m not even certain that it’s an ancient proverb at all. The quote‘s been attributed to both Alexander Chalmers and Emmanuel Kant.
Maybe they both went out for Chinese one night and received a three cornered hat shaped fortune cookie, found the same proverb, then read and stored it in their respective memories. They each forgot all about it until the day they committed it to paper and credited themselves with the secret to happiness. A reverse Pandora story. Doubtful they christened the desert portion of a multi course Asian feast with a crunchy envelope, baked with a paper message sent from the ancient wisdom of an anonymous Chinese philosopher. Doubtful.
Stress, A Love Letter
About three weeks ago my faith and hope that C, my partner of 12 years, the man who once held my hand as we walked out in public and people would turn to look at who we might be. We weren’t the most beautiful or the best dressed. But of us unusual, confident, and each with our respective uniquely charismatic personalities. We laughed a lot, we clearly exuded sexual energy, and we were into each other. I can say after all this time I don’t think of anyone else in that way. Never.
I miss not only our connection and intimacy but I miss C, and he’s not been around for a long time now. So about three weeks ago I threw down the ultimatum, because I knew the stress created by being his care giver and also holding onto the fact that he cared enough to make sure that financially I didn’t need to stress about rent or eating and he also helped me get my little vintage online business stocked so I had some meaning in my day. I don’t feel like a completely unproductive sod.
Hope begets stress in my above scenario. But if you want a little hope, as a side note watch the film Bohemian Rhapsody. It covers a period of the 1970s the early 80s through his death in the early 90s when Freddie Mercury, that staccato 10 octave range voice only given to very few by the heavens blessed us with equanimity and rock music. His voice alone turned a super cheesy movie, “Flash Gordon,” into the vehicle for a Brian May’s guitar melodies and Mercury’s gracefully sung lyrics, “can anybody find me…somebody to love?” Freddie left us too soon. Too soon, as I felt C slip away farther from my love and taking my hope by replacing it with stress.
A Text Never Sent
After two weeks I finally received a response from C’s psychiatrist as I left him a message to please refill his medication. If C went completely off of it, he’d turn very mean as he went through the withdrawals, and I was already starting to feel like my cancer was reacting to the thoughts that continued to increase in velocity that I may have to leave the security of my home and the hope I had for C’s wellness.
Dr. Seventyfive (sparing you my real nickname for his ex psychiatrist) sent me a text, after calling too early in the morning or inevitability at the worst possible times. You’d think after three plus years of my asking him to communicate via SMS with me due to my weird and hectic cancer-focused life he might get it. He asked if he should keep trying to reach either one of us or just give up. He’d given up on C long ago in my opinion, and I constructed a lengthy, direct response with clear annoyance showing in each word. For your reading pleasure here’s the response in full. Spoiler alert: I never sent it.
“I’m sorry; I’ve been focused on my cancer treatments and my own health. I cannot continue to try to get in touch during crises to no effect. I appreciate your assistance but he was worsening and it seems futile. My life for over four years since my cancer diagnosis has had less and less hope of his recovery and more and more stress in struggling to keep C fed, hydrated, calm, all the while fighting an uphill battle having him on the admittedly wrong medication? The man has slept the for half of 2018 and 2019. It was downright irresponsible for you to not insist he bring me along to several appointments in all that time so the full picture of his state of mind and the precipitates of his illness could be ascertained. Only then could you have formed an educated opinion for a proper treatment plan to be established and so he could be on a path to wellness? It makes no sense. By the way you should have payment in full since I dropped your cashiers check in the mail early this week.”
Ilene’s unsent message
Frustrated, upset, angry, losing hope, and stressing beyond belief, I was determined to see C recover. Either find a way to help him get better, and quickly, or find a way to situate myself in a far less stressful environment. However, the stressors associated with moving out and moving on might indeed lead to my untimely death from waking up the sleeper cancer cells awaiting a cortisol party. They’d disco twirl through my organs and systems, having a hormone punch drunk dance party in my body.
To prove my point, take five minutes and then do the math to add up the ratings of 43 items in the Holmes Rahe Life Stress Inventory. I’m sure that you’d not have the high score you’ll find you’ve got if you’d done the same inventory prior to any cancer diagnosis.
It’s odd but hope does not negate any of the items in this globally recognized scale. There’s no antidote once these life events occur except time – and people who have metastatic cancer do not have the luxury of time. So click the link – Stress Inventory Score List Chart for Holmes -Rahe Stress Inventory – and if you don’t feel like it here’s a picture of the test, which actually provides useful to understand why stress, both good and bad, contribute to a person’s incidence of cancer.
Well, I’m happy to report a man I’d known and loved is coming back to the surface and I’m cautiously hopeful but still stressed that something may trip his switch. But for now, he’s a lot better and on the road to recovery. I nearly had to move away from him. As stressors go, you know next to death, divorce causes a huge amount of ugly pain and uncertainty. I wouldn’t have a chance of making it with those ensuing events transpiring after my life as I know it falling to pieces and possibly taking me down with it. To reference the beginning of this circuitous discussion my abilities to “Be positive. Keep faith.” and “Have hope,” would weaken as would my health.
The rest of my unsent text to the psychiatrist after trying to send it for 45 minutes and I finally cut it out of the text application and pasted it into a note. Some things are better left unsaid to the potential recipient, this being one of them:
“Sorry for the length of this text but I’m in and out of Stanford today and have a cancer support group today and I cannot take a call. Please consider what I’m saying. Dr. XXX, I don’t think a specialist in adolescent psychiatry as yourself should have been seeing a 55 year old man with little to no improvement over three years in treatment. How terribly irresponsible it was to not look for a medication that would work or another of the newer more novel approaches – like TMS or other off label medication based therapies. You never called me to review his condition or ask any questions. I don’t need to know why, but I did feel this needed to be communicated to you so I could clear it from my mind and move on from the darkest days of my entire life.”
Maybe a tiny bit dramatic? However, his new psychiatrist, who specializes in OCD, anxiety and depression, stabilized him in less than 10 days. We even have a packet to read on nutrition and food interactions with his new treatment protocol. The doctor listened to my email plea, had his receptionist call me the next day, and we had an appointment within 24 hours. Five days later I had 60-70% of my partner back though with minor setbacks he’s trying hard to continue to gain control of his life again. Very difficult to come out of a fog and see the light again. I’m not sorry for possibly giving up a little life time due to the stress of the fights that transpired to get him in my car to the first appointment. He went to the second one on his own although I had to make it for him even with his idle threats. He made a third appointment before leaving the office on his own.
And that is my proof, friends who managed to follow me all the way past Go and collect $200 on the boardwalk, to understand the supporting actions and the environment in which I live towards a truncated yet hopeful future. The one where I move to the country with my partner. The one where he takes me to treatment like he took me to chemotherapy today, and the one in which my stress decreases in proportion to my rise in hope or seeing year five post-cancer diagnosis.
My fourth cancerversary was March 25th, but I didn’t marry the cancer. Cancer does it’s best to have death come to our wedding and walk me down the aisle by separating me from Craig, and I do not believe in polyamory or open marriages.
Even with a 25% chance of living five years past diagnosis I think I might have a great chance now of making it.
On the precipice of my fifth year of living with, not dying from metastatic cancer, I regard my life as a lucky one. No crazed busses have hit me, no falling airplane debris bonked me on the head, no Acme holes swallowed me up (a la Wile E. Coyote trying to capture the turbocharged Road Runner – meep meep!), and I’ve not been engulfed by any sink holes for that matter. But I no longer live in Florida, so I’m safe from stranger crimes for now. (For a great laugh go to your country’s YouTube website or app and type in the search bar “a Florida man”. Any of the videos should suffice but the one with the black silhouette puppet of a machete wielding man is the one to which I refer.)
Congratulations! You’ve won a Brand New Life!
I’m opening a dealership to sell brand new normals at highly discounted prices to post-diagnosis cancer survivors, and free of cost to stage IV metastatic patients. Like a brand new car driven off of lot, you feel free as a bird and you let your excitement build, flying high on life. Accelerating, you motor along the highway with grand expectations of the wind in your hair and the shine of your favorite color gleaming in the sun along with your sparkling, smiling eyes…
Screeching to a complete stop, I shake your head at the realization I’ve got a lemon. Or, shall I say two lemons. The optimistic me thinks about making lemonade.
So, what’s included in the new normal? warning high sarcasm hazards ahead
The base package may include things like: a new hair style; breast implants; a flat scarred chest; a distinctive and professionally designed tattoo should post operative implants not meet with your new body image; a new job at a lower paying salary with an understanding reporting structure and rest breaks on a downy cot under your cubicle as needed; awesome insurance plans including dental; a long life that won’t worry will change on a whim and without notice; free alternative therapies; beautiful and free cancer retreats not too far from home and including all the health benefits that your body desires; services such as a personal concierge along with house cleaning and perfect laundering done by a professional team of trained elves every night; and a new house built to spec with a walk in closets and huge jetted soaking tub; a boudoir and bathroom that exudes infused essential oils and spouts water; music based on your intuited mood as you enter the perfectly lit spa like bathroom environ with heated floors and a towel rack that hands you 10,000 thread count bath sheets, takes it from the floor; and a Rube Goldberg like https://www.rubegoldberg.com device that brings you a beverage, anoints you with your favorite scent of lotion, slips you into your clothing choices, and pats your perfect and round little behind as if to say “atta girl!”
Your understanding, sensitive and emotionally available partner awaits…. and now you experience the most sensual massage you’ve ever dreamed about. To quote Hamlet, that existentially hindered spirit conjured by Shakespeare: “to sleep per chance to dream, ay theres the rub for in that sleep of death what dreams may come?” Yet, how to dream if there’s no way to find any good night’s sleep and rest a thrashed, exhausted body?
Whose normal is it, anyway?
Once, long ago a descriptive sentence of my life hadn’t used the adjective, adverb, noun, or any other grammatical form of the word normal. I find the word “normal” as applied to me, well…normally insulting. That’s before cancer. Things then changed after my diagnosis and initial prognosis. Before cancer nothing about my life was average or considered normal: my dual majors of English and philosophy of my college degree; leading unbelievably to my business strategy high tech career; all of my intimate relationships and friendships; the bend of my sociological, spiritual and political beliefs. I’m not of the norm.
Wagging my tail or bobbling my head, you’ll rarely, if ever find me at the apex of the bell curve. In fact I’ve not found myself as a median or a middle of anything. That’s with the exception of being the center of attention by default or with purpose. And I find myself spinning around quite often in a roundabout way around the forced conscription into this new life. We are all in a way traveling on our own path, without the use of any cartographers or maps, without the representations of what came before us.
Oddly enough the human condition is situational. Therefore, when tragedy strikes or hard things happen to good people, we crave the stories of others like ourselves and we want to tell our own so others can relate. It’s not a phenomenon reserved for cancer; everyone wants to feel like someone else can relate. Everyone needs community, and that’s about the only normal thing I can find in becoming one in eight and one who has dense breasts.
Yet as an outlier, it’s not the norm I find I can really relate to. It’s the unknown, messier, rockier, and lesser traveled roads to wind our way through the mountains and valleys of life we find more interesting and on which we find success as defined by us, rather than by society. So that’s the path I’ve chosen for my cancer as well. And the community in which I find the best company I hardly think I’ll ever meet in person, although I hope to someday meet some of you.
Outlier as “metser” – don’t pink on me
Never normal again- none of us, not even the pinkest prettiest petunias, the cheerleaders for survivorship and ribbons and fundraising can hide their fear, strength, weakness, joy, depression, or weariness. Least of all, those of us who are post cancer diagnosis of any sort.
Guilt, for instance, isn’t anything I can bring myself to feel these days. Even survivors guilt. In handling everything I never wanted or asked to, such as being unable to work – I’m unhireable, undesirable, and probably couldn’t meet a deadline if I wanted to…
Instead it has to become okay to be tired, exhausted, mentally and physically, from doing what you have to do to survive in this world. It’s a world that wants to believe if we look fine, we must be fine to get back to life as it was prior to diagnosis and treatments that would kill any lesser woman or man alone.
Defining a New Life
But who actually defines their life as normal? And, if you consider yourself and your life normal, then why do you need a new one after cancer or a cancer diagnosis? One should just pick up where they left off after treatments end, right? Wrong. Proof point: started a weekly two-hour program at Stanford Thursday and I’ll respect the confidentiality of our group of about 12 and two facilitator leaders. But I will say that one topic was defining a “new normal” according to which one might carry on life after treatment. Humph. Clearly a “non-metser”.
See how many things on my incomplete list apply to your normalcy. To me, a life with mets normally means:
Cowering with fear of an body ache or a pain
Becoming isolated from society either because my blood count is low or because people think cancer is contagious
Trying to get by financially on what’s left after you pay for medication
Learning the language and protocols used in the oncology community
Educating myself by reading or listening to every book, podcast, or video I can get
Fighting with the pharmacy about refills
Fighting with the insurance company about the same thing
Dehumanizing by nurses and other medical personnel
Hoping for new clinical trials and medication
Dealing with the side effects of chemo, radiation, medication or some combination thereof
Staying up abnormally late into the night
Waking abnormally late into the day
Crying too often
Needing desperately to feel human touch
Desiring the earth and the natural world around your body
Fearing the unknown every waking day
Wondering if that pain or that lump is some progression of our cancer
Attending cancer retreats, peer group sessions, fly fishing, horseback riding, and many other things you’ve never heard of
Retiring at 49
Using the cancer card at the right times and feeling guilty for using it
Understanding the true meaning of mind-body connection
Worrying about a future that may never come to fruition
Writing your will, your “do not resuscitate,” your last blog post, your letters to your people
Debating pink ribbons with non-metsers
Trusting your intuition about your body and how you feel
Quitting drinking wine, eating sugar, or anything you find decadent
Juicing a bag of rutabagas
Eating healthier than ever before
Avoiding putting poisoned and GMO foods in your body
Expressing yourself creatively
DEMANDING A CURE!
Wanting to live…
Is at anything on the above list a normal part of anyone’s everyday life? I hope not. Otherwise you might be a metser. Hey, a new normal comedy routine called “You Might Be a Metser If…” a la comedian Jeff Foxworthy’s “You Might Be a Redneck If…” I am a smartass, but seriously I was never normal. The term new normal doesn’t apply to me and probably makes you recoil too.
And say happy cancerversary to me. It’s four long, short years with stage four metastatic breast cancer to my bones, liver, and peritoneum. It’s been a long strange trip for sure. And, speaking of trips, do you know anyone doing LSD therapy with metastatic cancer patients? How normal is that question! Here’s to another year and thank you for reading and hanging out with me while I ranted on…I feel much better now. Off to take my apple cider vinegar, baking soda and Epsom salts bath before I rush off to my Taxol weekly chemotherapy treatment.
Oh, and the photo. That’s the handwriting of me falling asleep as the Benadryl takes effect prior to the Taxol chemo treatment. They wake me and ask my name and birthday, which hadn’t changed since I walked into the infusion center an hour prior, and lucky me all on a Saturday. My weekends are shit lately anyway, since my husband’s had a depression relapse. So normal. So very very normal.
If someone handed you a clipboard with a survey attached regarding your “wellness” today, how would you respond? Doing my best to circle the closest answer to each inquiry using various rating scales, I hand the one-sided piece of paper sharing all my hopes, dreams, pains, and happiness to one of two nurse practitioners. Neither can truly comprehend the fitness of m6 mind and body by grazing over my confessional. Worse, they seem as uninterested with a quick flick of the wrist it’s tossed on the exam room counter, after it’s removed from the clipboard. I believe I spotted an eye roll of cynicism as I sat watching for an6 sign of interest on their face.
As always I inadvertently misappropriate the ballpoint pen on temporary loan I really don’t need, given my penchant for purchasing an embarrassment of redundant office supplies, to fill in the survey: “YOUR WELLNESS: how well you feel so your cancer center staff could attend better to your needs?”
Immediately an Existential crisis ensues. Such questions provoke an intensely dramatic Shakespearian-Hamletesque- “to be or not to be” soliloquy of the mind, or just plain thought vomit. Hopefully I don’t puke all over the page as I must determine the scale on which my most important stressors exist including appetite and nausea. For instance, rating my ability to think and judging during this particular day a level of satisfaction with my relationships? Seriously I think it’s not cogent at the moment, but I answer evoking my centrist point if view, since going too far right means I’m really angry and headed too far left means I’m going insane with happiness. The middle answer for the question is “sometimes.” Makes sense I suppose and I do not need those prescriptions adjusted.
Also I’m pursued by this paper chasing mind stalker to rate my current pain level. Do you mean right now? This morning when I got up? In general? If they mean at that moment right then or that just passed while I’m filling out this supposedly innocuous survey of my overall well-being? It’s giving me gas and a bit of acid reflux, plus this pen is really crappy for a nice place like Stanford and gives me a hand cramp that won’t let up due to neuropathy. (Note to self, donate nice pens for metastatic patients to lift in my last will and testament.)
What does it all mean?
Now the real kick in the ass – how I rate the meaningfulness of my life on a scale from excellent to poor, my activities in my home, social life, and community rating from completely to not at all. Two specific questions require an essay by Diogenes regarding cynicism and stoicism but there’s no blanks for open form answers. If you’ve read my posts you’re thinking the form might require five pages of addendum to control my verbosity. The questions in question:
My life lacks meaning?
Irritable, anxious, or depressed?
Rated from “never” to “always,” and “sometimes” the middle ground, on this particular day, I circled “sometimes.”
Sometimes my life lacks meaning for reasons such as my usefulness to society in general, to my financial stability, to my husband, to my friends, even to my customers in my Etsy shop – shameless self prhttp://www.yeuxdeux.etsy.com – should you want to do some holiday gift shopping from a very small business that directly supports metastatic breast cancer at the grass-roots level.
The purpose of consciousness might be as simple as love. Therefore we are all here to bring each other joy through love. And I firmly believe love is our purpose. What if, as imperfect as we are, we can achieve a clearness of mind to allow our thoughts about people to fall away, and rather than judge them love them instead? Wow! the joy we could feel if we lived without those thoughts, and the love we truly feel could comfortably be shared even further than inside the doors of our rooms.
Try a little tenderness.
Experiment with the following: show a little love to somebody you don’t particularly like today and see how your whole attitude about them and yourself changes in an instant. Perhaps, you can love yourself a bit more, too. But don’t give them a satisfaction survey when they’ve been loved sufficiently by yours and their agreement, because you’ll lose the squishy warm feeling of human interaction to the marketing puffery even taking place in your personal brand study.