We never know how high we are
Until we are asked to rise
And then if we are true to form
Our statures touch the skies
Emily Dickinson from poem 1176
Happiness: an illusive inner state to those of us with terminal illnesses. Each happy moment rolls into the next, yet we drive through life on a road with potholes and speed bumps as a reminder that we better slow down and enjoy it while we have this chance. To be sure, each and every waking morning opens the curtains on a new chance to grab at the brass ring, that for us is coveted yet covered in Vaseline. The ring slips from our hand as we ride by. The horse we ride runs free with us on its back, hand filled with the shadow of oil from our attempt at forgetting for a single day that this might very well be our last.
As finding our dream house should make for a feeling of joy at the real chance of building a fantasy foundation for our new beginning, I still well up with tears when I’m alone. Amazingly we have experienced much joy, having moved from the angry, traffic snarled, polluted San Jose to the clean, kind, and friendly cradle of the Sierra mountain foothills. Put that together with finding a home to put down roots permanently and you’d think – what does she have to complain about? Believe me, I’m not complaining one iota. It’s simply that the bittersweetness of biting into such a red delicious apple knowing it’s laced with poison that will kill me sooner, or I hope, later, covers my heart with a dark vail of sadness. I may not be here to enjoy the fruits of the seeds we planted and have cared for such a long time now.
We tended to our garden most recently with the difficulty of the move itself and over many years seeing my beloved finally pull out of his depression. So much to look forward to, so much love in this very moment in time to be grateful for.
Then there’s my cancer.
Making plans to switch oncology teams, making sure we’re in as clean of a house with the very best infrastructure in which we can invest – things like low to no VOC paints and bamboo wood floors – we’ve found an opportunity to live by the anti-cancer book. Complete with new friendships and a very cancer-supportive community this is certainly what appears as one of the four noble truths: nirvana. I’m finding a certain lack of suffering here. To me, who’s always lived by the old cliche the grass is always greener and finding some level of happiness wherever I am, this time of my life comes as something of a surprise to me.
And then there’s my cancer.
I’m reaching out for an exacting of equanimity here. A balance of sadness and happiness. Where suffering becomes the background or the shadow and joy comes forward to the forefront and into the light. It’s so hard. That’s all the language I can use to look for a way to achieve balance of taking care of my physical and emotional heath while not focusing on it. I can liken it to taking a photo of a sunset when you’ve got a person standing in front of the camera lens. I can see the colors blazing in the distance but there’s a big dark presence preventing me from taking in all that beauty.
Because there’s the cancer right in the way.
I hide it well. Sometimes my beloved asks if something is wrong or if I’m angry with him. No honey I’m not. I’m happier with our relationship than any other time in our 12+ years together or any romantic relationship I’ve been in my entire life.
It’s just the cancer getting in my way again.
Here’s a poem I wrote a few weeks ago as my weekly blog bonus. I love the theme of it – it’s tangentially akin to the theme of this blog post. On that note here’s:
Would I be if born a snake
Or bee, or clam, or fish?
Leg less, bloodless, and cold blooded
A thing without future or past.
Without arms to hold us
How do they establish a child’s
First love? Without sounds
Without syllables, no words to wound
With no hands to slap cheeks for the tears?
No false devotion to express and
No arms to commit forged emotion.
Did god know we needed belief?
Maybe words and hands on the end of arms
Beat us to the punch?
Whose guilty fingers purge my throat
To say nothing of love’s remorse.
Outstretched, sewn, and quilted
Receiving dubious mistrust
And soiled gifts of healing.
Arms holding light to beseech me
The creatures run back to the wooded wild.
Any path dark and clouded
Covered with leaves compacted
By nights grand mothers who sneak
By and slither away with our soundless cries
Morays silently drift in shallows,
The pecks of grounded wild turkeys,
The opinions of poisonous black widows
All mothers in the dark shadows of sea, of land, and of twine
Wait to hold their young somehow.
They give what’s needed and then take away
Without a word to convey their warnings.
Compliantly we wait at the forest edge
Huddled alone and cold until
Tonight tar black and frightening
Clears away in the dim light of morning.
Who wants to die without seeing everyone you’d want to see and saying all the things you want to say to the most precious gifts life has to offer: of friends you make along the “long and winding road,” to quote Lennon and McCartney. I’d venture to guess very few people, if anyone, would pass up such an auspicious opportunity. Or would they?
Receiving a terminal illness diagnosis, like metastatic cancer, can cut the human heart out like a serial killer with a hunting knife. Stunned we watch in horror as in his hand your life quickly fades to black as he shows your heart to you, blood through his fingers right before the light in your eyes burns out, extinguished forever.
Why do I imagine such a vividly gruesome metaphor for what should be a series of happy reunions?
A day in a life
Ahhhh. My bath time. The time of each day when I reflect on my self care and I give myself a physical and mental check up. Some time to meditate, listen to an audio book or music or both. Or do a Zentangle focused drawing tile. If you’re not a visual artist like me but want to learn to draw, try the Zentangle methodology. It’s great for concentration and for relaxation and it truly improved my confidence in my ability to create hand drawn artwork. I’m even proud of a few of my pieces!
Stumbling into my peaceful bath ritual came The C. Innocent as the slightly autistic driven snow, he offered,”If you need to travel to say goodbye to some old friends don’t worry, I will take care of your travel costs,” offered C last night as I sat in a hot bath. I sat with tears falling into a bathtub of steaming water. Such a thoughtful gift brought about a tearful response. He tore at my heart while giving with his own. He left me alone shutting the door, quietly walking away, feeling upset and confused.
Why did I cry instead of showing my gratitude? His generosity shattered me into a hundred little shards of painful fragments. Pieces of sharp broken promises of a future. Another day in my life, post-terminal illness diagnosis. I’d heretofore avoided the subject of visiting old friends. There are people I frequently daydream of seeing again, who pop into my minds eye along witht the feeling that I might not see them befor I die.
*See stage 4, that’s my survival chance beyond five years but I could never play by the rules so these numbers are mere poo flung out to scare me from Dr. Mary’s monkey cage. It’s been four years and two months since my diagnosis and likely much longer since I’ve had my chance to begin with before it went raising my body like a pirate.
On our way home
I hesitated due to the ravages of chemotgerapy to visit with an old friend who came from Paris with his 22 year old son to the Bay Area. He and I last saw one another 12 years ago when he dropped me at the train station in a small town down in the southern mountain region of France. We were not too happy with eachother at the time. But maturity and sense took over in the span between then and now. Meeting him for an hour before he had to check in I was not nervous but excited to see him.
Funny how cancer gave me a strange confidence in knowing it didn’t matter how good I looked. It didn’t matter what I wore, because neither of us will remember our relative fashion sensibilities as the highlight of our brief yet meaningful encounter. We will recall how it felt to hug one another and to feel the connection of a true friend and the kind kind of love that’s without beginning or end.
Moved to feel the connections we make along the way with those who travel along life’s path with us, authentic and deeply touched and indelibly changed by that very beautiful place only we know while joined with another spirit. Through the years we expand on our experiences together and fold them in on our consciousness. Our expression then takes on a higher power, two squared if you will. We better ourselves because of an instinct to find other souls in a sea of possibility. This I believe is where our instincts must take over.
I trust my instincts more than ever because sometimes that in and of itself is what was changed by another person. The innstinct infuses us with life and light and love. For what is love but the purest form of human instinct.
Ticket to Ride
Try as I could I couldn’t but cry for being happy to have seen him… knowing it may be the last time. But perhaps not so until we meet again…I am here and as long as I am alive there is hope. With hope comes possibility. And I have hope there will come a day when we can hug again.
Yet we can only live in this moment. It’s all anyone can do. And I ripped the bandaid off of my fear of the next time I see an old friend, perhaps being the last time we may see eachother. Maybe C’s right and it’s time to get traveling and live again to see those people who have meant so much to me over the years, and to the person I’ve become. Because whether or not they know it, I would never have the strength of spirit to dig up the tenacity required to go the distance with metastatic cancer.
Never underestimate how you’re loved. It’s more than you think and never too late to find out.
Cancer doesn’t look
like me outside but inside
I look like cancer.
The above photo collage represents me at turning points in my life over my near 54 years. Anyone diagnosed with any kind of cancer, chronic or terminal illness changes at the core of their essence. Such a granular and fundamental shift in identity transpires from the inside out. Shift happens to our personalities and our bodies, just as a side effect from chemotherapy might effect our appearance or our ability to keep food down.
Cancer’s impact on our lives either positive or negative, hurricane force or light breeze in strength, prove exceedingly difficult to understand by people without the dreaded disease. Life continues on like “dogs go on with their doggy life and the torturer’s horse/ Scratches its innocent behind on a tree.” (Auden, W. H., Musee des Beaux Arts.) In my experience, through my metastatic breast cancer diagnosis four years and two months ago, I’ve been transformed by some of the following: isolation, fatigue, loss of family and friends, embarrassment, financial concerns/ being broke, dependency, and physical brokenness. I’m focused on treatments, paying for everything, appointments, finding like minds, my wellness, and essentially searching for meaning in my life.
Many of us aren’t able to work or progress in a career as we did prior to a cancer diagnosis. Most metastatic cancer patients can never return to the workforce again, as early retirement and Medicare and social security caps on income knock us down to a life of financial struggle. We are out of the running.
Having terminal cancer equates to stress over money matters. We cannot work as we might like nor can we be nearly as active as we once were although we appear on the outside to look as though we could be working 40-80 hours a week. I can’t imagine being on time for an 8 am early meeting when it’s difficult to even get to an 8 am medical appointment.
Believe me the best I can do on bad days is to cancel an appointment and return a few hours I’d rather spend with them than in bed to a friend out of respect for their time. It may not work for some people. A good friend lectured me a few weeks back for my late arrival to her house; she took it as a personal affront. It’s not my intent to set a date and break it out of lack of courtesy. Contrary I thought the effort it took at times to even get out of the house some days would make for a closer relationship because there’s not very many close friendships in my life anymore.
Even what’s become of our time as we embark upon a life as a patient doesn’t even make sense to a well person. There’s a canyon between us and the life we once led, as we stand on one side of the divide unable to traverse the depth of the change within us. In fact the change illness brings upon our time can come to define our lives, as indeed at times it must.
And indeed there’s no way to turn back even on a different path. I looked around to find my old life obliterated. The hope to find my old self safely tucked into a hiding place for me to retrieve it should the time come if a prognosis of no evidence of disease, or NED, will never arrive. My former identity and the robust capabilities of my pre-cancer body, mind, and spirit no longer exists. I look around behind me to find only a blank darkness where I once existed. No longer identified by my career, my resume is meaningless. My contact base, years in the making, no longer contacts me.
A Series of Transformational Moments
We build our personalities on transformational events and by the people who bring us along through it, or travel along beside us. Indeed anyone’s life, long or short, cannot float through the world without attachments altogether. Our identities are linked to other people. Our experience and events either kicked into motion by us or in spite of us have shifted from managing our time into managing our health.
In fact certain seminal points designate key influences on how we once defined ourselves. Perhaps a few illustrative experiential or transformative events of my own can provide you with insight on what this really means.
My paternal grandmother, who adored me and with whom I spent every waking moment in the last four years of her life, died in 1969 at 62 of metastatic breast cancer. Not my brand of genes, at least not according to the first genetic study done upon diagnosis, nor the study by Stanford’s heroic genetic geniuses. (I really do respect and adore the women running this very small, sadly underfunded department.)
The first photo in the collage above shows my mother at 32, my brother at four, and there’s seven year old me on the Schwinn purple low rider banana seated racer in my favorite white parka. I appear as a girl who was very tall, lean, healthy and with slight sadness behind her eyes. Looking at myself then and seeing myself now, I hid my sadness under a veil of strength.
You’d not see in this photo taken November, 1972, the events that caused such melancholy. It was taken just after my dad left with twin suitcases while my wailing mother lay on the floor attaching herself to his ankles while begging him not to go. She cried to him not to leave her alone with me and my brother. This took place before we moved to Florida, when we still lived in New York City. To me New York remains indelibly in my memories as the land of museums and musicals, pizza and plays, great water and sticky, snowy winters, the best zoos and the best park including Central Park, Coney Island and Long Island where my mother’s sister still lives.
Moreover, there were great educational institutions for a precocious chatty kid. In September of 1972 coming back from 1st grade summer break and my parents break up, and the last summer in our bungalow in the Catskills. Instead of the truth, which I likely couldn’t bring myself to interpret at the time, I told the class I’d been to Ireland, where I’d taken dance lessons and learned to do the Irish jig. Not recognizing the Irish accent of my 2nd grade teacher would mean she’d call bullshit on that, she asked for a demonstration with her accompanying me on piano the next morning.
Returning to our 14th floor high rise apartment, begging my “why’d-to-death” mother to take me to the library to check out materials I needed to finish my report on Ireland. She probably had a hunch I was up to something. The next morning I jigged all three city blocks to school. In true-to-me fashion, I pulled it off.
Like so many stories in a lifetime of unlikely success against the odds, success was and is the only option I can accept. Cancer remains a mysterious exception to the successes I enjoyed pre-diagnosis.
There are several iterations of the former me in whose body I can no longer recognize. Clearly, my good health, my lack of disease and strong immune system now shine from the past. I show like a racehorse at auction. Look back at the photo collage of my life at seven, 33, 41, 43, and 53.
Those images swirl slowly around me like water down a clogged drain. Trying to stop metastatic cancer from overcoming my physical self may be a bit less tricky than stopping it from overcoming my conscious sense of self. The ethereal stuff that makes “me”…well, me. After four plus with a diagnosis of metastatic disease I now understand without a doubt the impact of cancer on a life.
No one seems to know how long the three tumors grew, then burst like a dandilion spreading seeds throughout ny brittle bones. Recalling the year of a poor bone density test result at 46 and the following year my GP missed the opportunity to send me to have an ultrasound. Although my dense breasts make radiologists cringe, my manmogram radiology report that year stated, “inconclusive,” no further action or tests required. Come back when you’re 50. Too late.
Such a kaleidoscope of images. Good memories and some very bad days. I may have been able to avoid a few of the worst events in retrospect, but instead transition into my post diagnosis identity. They dull my pain like opioid based medication amid other side effect dulling drugs in my big purple bag. (For a photojournalistic view into some truly grueling drudgery read my post on going through opioid withdrawals due to a doctors office and pharmacy screw up – opioids and pain medication
Who am I now?
All this aside we identify ourselves by any number of memes and meta data. Identity is based on our family positions such as grandmother, mother, or stepmother (heaven forbid). Today arguably, women also identify themselves by roles still viewed culturally as men’s realms such as our careers, our chosen college level degrees, and by philosophical ideas and rights. Women in the United States weren’t able to vote in elections until the passage of the 19th amendment to the Constitution 100 years ago in 1919. Equal pay still mysteriously evades our purses, and we may lose the right to control our own reproductive destiny if the Supreme Court overturns Roe v. Wade this year.
For women too, the primary gating factor to our high incidence of breast cancer incidence is simple as just being born a girl, which feels ridiculous to say aloud. Yet…as recently as 50 years ago, the overall statistical chance of a breast cancer diagnosis was 1:40. In 2019 – 1:8 – and genes impact breast cancer in a mere 5% to 10% of the cases.
Indeed our experiences forge our identities along with cultural, familial, and other factors. Experience begets identity in a sense. We’re also a product of our memories. Real or imagined we create our pasts, writing our stories through synapses of electromagnetic energy. Our lives are etched and stored in our beautiful brains. The future plans, made with the aid of our prefrontal cortexes, the part of our brain that differentiates us from the rest of the animal kingdom, either work out or just fall flat. We pick ourselves up when we fall over our missteps or we succeed in spite of our health. Yet all of this can come to a complete standstill with a the stroke of a pen: a physician’s signature on a diagnosis of a terminal illness. Our futures now must include some sort of plans for an eventual and likely painful demise.
A bomb falls out of the sky. King Ferdinand is dead. Pearl Harbor lays bombed.
My life, the one I built and the woman who I once knew well is now scattered everywhere and gone forever. Sniffing around in the rubble for pieces of evidence to pin onto a cork board instead of my “self,” a crime scene is pieced together. Can you see the viewership of the next CSI: Dense Breasts? Or the sequel CSI: Metastatic Cancer?
Where did you come from, where are you going?
Since I’m not ever going back to my old life, as if it were even possible, I find myself unable to identify with any collective of people off line or any particular system of belief. But I never did. And I cannot say I’ve found a group of peers to meet in person with to let it all out. I cannot say that’s something I found satisfying prior to cancer either. No cancer center gets it quite right for me as I need it, but as you might have guessed, no club felt like a great fit before cancer, either. I worked very hard and enjoyed my unexpected success in college, winding up with a bachelors degree in English and philosophy.
Oddly, I somehow parlayed my degree via public relations and did a 180 degree turn from liberal arts to a 27-year career as a business strategist and c-level executive inside the still largely male-dominated technology industry beginning in 1994. Not surprisingly, my past experiences influence and support my approach to cancer. Fake it until I make it. Negotiations, contracts, promotions, marketing, mentoring, leadership and all the other skills necessary for success happen to serve me well in my life with MBC.
Perhaps I’m not that far removed from my identity after all. If we are the collection of our experiences then how can we approach our diseases any differently than we would any other life altering struggle? I’m unable to work; forced into early retirement by stupid cancer.
I’m learning humility was always a part of myself. Writing and creative work always got me through the toughest times. Learning to run while I could still only walk was always my modus operandi. Feeling around in the dark for a light switch I look in the mirror and my eyes are still mine. I still couldn’t care less if anyone believes I have cancer or not. Inside, hidden from prying eyes, my pain burns the most. It’s what no one else can see but me.
And no one can ever know what blisters form by walking in anyone else’s shoes. I’ve still got some very big shoes to fill in this life… those shoes are my very own.
I hope one of my favorite poems, quoted above, sums it up nicely and you’ll understand how I’d come to my new understanding of parlaying my experiences and strong points into my life with metastatic breast cancer. It’s possible- for all of us – to bring our lives full circle even if we once flew high enough to reach the sun – wax wings melted tumbling into the sea, we needn’t drown. Just swim to shore, dry off, and join the daily life as we are. We can still fly, but with real wings and using the wind beneath us to provide loft and let us soar again with confidence.
Musee Des Beaux Arts
About suffering they were never wrong,
The old Masters: how well they understood
Its human position: how it takes place
While someone else is eating or opening a window or just walking dully along;
How, when the aged are reverently, passionately waiting
For the miraculous birth, there always must be
Children who did not specially want it to happen, skating
On a pond at the edge of the wood:
They never forgot
That even the dreadful martyrdom must run its course
Anyhow in a corner, some untidy spot
Where the dogs go on with their doggy life and the torturer’s horse
Scratches its innocent behind on a tree.
In Breughel’s Icarus, for instance: how everything turns away
Quite leisurely from the disaster; the ploughman may
Have heard the splash, the forsaken cry,
But for him it was not an important failure; the sun shone
As it had to on the white legs disappearing into the green
Water, and the expensive delicate ship that must have seen
Something amazing, a boy falling out of the sky,
Had somewhere to get to and sailed calmly on.
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.