Six Years of Metastatic Breast Cancer & My Path

We hold so few of cards in that feared hand one’s dealt along with the diagnosis of any terminal cancer. As an adult we know too much of life by then to live outside of fear. We know far more about the losing hands to come at the cancer gambling table. Unforgettable emotions of diagnosis day never leave any of us the same. No one can conceive of the sentence handed down from an unseen place. The room becomes a blank echo chamber.

We cannot believe our bad luck nor even that the cancer itself somehow grew without us knowing. And no one can really explain it to us. No doctors. Not anyone we loved, not our friends, husbands or wives, mothers and fathers, spiritual guides. Not even god. Nothing those cards we sat holding that day in an office or on a bed in a hospital.

Or at home over the phone if a physician, or anyone in power at that time had they chosen such a cowardly way to end our lives. Just in as long as it took it hear the words we never thought we’d hear – cancer – we disintegrate. In one two-syllable word we change. Quite explicably yet into someone the same but very, very different – suddenly we know we’re dying although death escorted us to that moment in time all along.

Just as suddenly as that change, our gravity which once held the planets in our orbits releases everything we ever knew or held dear. People, faith, hope, love, plans, dreams all go flying away into the universe. Some never to be seen again.

We fall out of life’s great circle, kindu of like when poor little Pluto, downgraded from its original life as planet. I wonder how it took the news. Maybe it always knew it felt different from the other eight planets. Just a small sun orbiting satellite. We don’t really talk at all about it on earth anymore. It’s status shifted.

The Great Wait

After diagnosis I recall the eternity as I waited for the word “go.” The lack of immediate reactions became ludicrously too much to bear. Did these people not know I would die soon? I didn’t have all day or any time at all to wait anymore.

We metaphorically cut out our hearts and hold in our hands to show anyone who might say, “yes, it’s still beating, I see it. I see you.” Now we’re invisible as human beings as we begin the ending of our lives as a “patient.” We become a case. An invalid – so apropos. A disabled person. Some no longer able to work due to the cures. Not necessarily the cancer in all cases.

But patient means several things – it’s the sick and the ill to be sure. But the patience we’re asked to compose ourselves with as the unflinching and resilient ones. The indefatigable and persistent self-advocates who “fight” and then “lose the battle” to the disease. Is it the disease really that kills us all or the burning, poisoning and cutting we must endure? A patient endures. I prefer my friend Rudy’s endured to survivor (we don’t) or fighter (presumes a loser) or a warrior (again we lose a battle to an invisible enemy.

The enemy within us of our own cellular matter gone haywire. Some with genetic mutations, most – over 94% without any explanation. But we spend precious time seeking out a reason for all this. The physicians seek it out for us. They report back generally a status to us of where the cancer is, how it’s progressed. We hope for the disease to show no evidence of itself for a while but in general the scans tell a story of a different kind.

Living scan to scan with anxiety over what the future will hold in the result to be read to us by an oncologist or radiologist or read on our own. As my friend Victoria a long- term unicorn nearing 20 years of enduring metastatic breast cancer likes to quip with her fast wit: unremarkable and stable. That’s like the weather.

We hope there’s no storms brewing somewhere we cannot see yet. But the earth already moved under our feet so many times those losing poker hands don’t phase us much anymore. We save the tears for when we’re not at the table.

Your lips are moving but I can’t what you’re saying…

We leave our reading, or reporting, of the diagnosis without an idea of our real prognosis.

The elephant the room is the question, “how long do I have to live.”

We run home to Dr Google and find out what our general prognosis is – but we dare not look too long. That number of years cannot possibly apply to us. We have plans.

Some of us have surgery to allow the insertion of a port. A strange appliance that’s likely going to be in us until something drastic changes. Change as is very bad or really good. Nothing in between. The port becomes our Purple Heart.

It’s a three pronged plug in our chests that allows things to be put inside of us and take blood out of us for lab tests. It saves us from the living hell of becoming a pin cushion looking much like a junkie.

If we hadn’t known anything about cancer before we receive a stage 4 diagnosis we are known as de novo (from the beginning). No early stage cancer that we were diagnosed with before, we don’t have a clue as to what really is to befall us.

I couldn’t expect to live longer than six months maximum.

The Great Negotiator

When I found out and returned home form a week in the hospital – I reached into the virtual stream of information looking for more than just data on prognosis. I did not believe that 2.6 year average belonged to me. The physicians at the hospital said I should go and prepare my affairs.

Half joking I responded with, “I don’t have time for dying right now I’m too busy.” And I realize only now I was going through negotiation. It’s a recurrent phase most terminal patients go into at the time of their diagnosis settling into their cognition.

I’ll leave the boring details to five years of blog posts. The status of the day is pretty scary. Now my metastatic breast cancer awakened itself like the ugly blood born vampire it’s proven to me it can when it wants. Now again like three times beforehand, I’ve shown a proliferation of liver mets. Only this time it’s slightly different. The Mets and several other problems were caused by a cure itself.The radiation I so feared would cause me more harm than good, did. So now there’s a choice. I’m hesitant to “waste” life extending meds like Piqray and Aromasin . I began those this week on the same day I had another five liters of ascites fluid drained from my abdomen.

Neatly, I have a little mutation located by oncologist number four. I won’t count the first oncologist who informed me of important things through a nurse practitioner. She left me feeling frightened and uninformed, alone and afraid. Not good enough to sit and blankly stare at her computer screen while I assumed she was hearing my questions and get back to me. But she hoped I suppose I’d forget. Never feigning to take a note or respond with a promise to get back to me. She lasted about three months. I asked for a second opinion, and she got knsukted and I felt guilty for asking.

It’s the PIK3CA mutation.

Carried to me by my father from my grandmother, who died in 1969 from metastatic breast cancer. She was born in 1903. Graduated high school in 1921. Was a hat model and my grandparents were very much in love, pictures of them dressed to the nines at the clubs in Harlem and the Borscht Belt shows of the Catskills, in New York City, in Miami Beach. She smiled, she dressed so beautifully. She was tall and interesting, and she loved me ever so much, the daughter she never had. She nearly died in childbirth with my father and his lost twin brother, after countless miscarriages.

Unicorn
The Unicorn- an MBC endurer who has lived past the statistical data currently available and continues to thrive on the medications currently available to extend our lives.

This past month I had a forced break to take my a Covid vaccine. That break created a perfect storm of timing to do so. I’ll be as good as it gets in terms of my blood cell count and my metabolic panel. I’ll be as healthy as I can to handle what may come. Attempting to line up some level of support proves difficult.

However, as always, we know in our hearts what will work for us. I don’t believe coming to cancer with a severance of mind and body is necessarily our best platform for optimal healing. It’s one and the same thing.

I wonder if there’s any magic to become a unicorn. Something mythical and magical, a thing that’s studied, watched. Captured by its own special aura. The colorful rainbow of light protruding from its head. What could I do to get my horn?

Separating my mind from my body can’t work regardless of over six years with metastatic cancer. I’m not depressed, nor am I falling to pieces, although there’s nights I cry so hard from sheer loneliness, I could wring myself out like a dish towel in my kitchen itself bleached, dirty, and once was brand new until it got its demotion from status of the bathroom to wiping grease from the stove.

Yet I can not say it all began that way six years ago Thursday. It’s through learning what our body’s needs are and responding to those with our minds focused on the healing of our bodies when we can achieve the maximum possible results at that time. Perhaps as we go along the cures worse than the disease. I don’t know. So much is a big question and a level of risk goes with every card hand we’re dealt.

That’s okay too. We all face a lot of uncertainty. Additionally in these times of so much isolation and perhaps even not seeing as much of our health care teams as we had become accustomed, it’s crazy to think they even know us well anymore.

Seeing us for an hour every eight weeks certainly is not quite enough – after a chart review, perhaps a bloodwork result or a scan result to go by or if your oncologist believes in cancer numbers then those too, but I honestly believe had we waited to see if the bone met shrunk with the Verzenio which did nothing for me close to ibrance and fulvestrant but that’s another story as to how that got screwed up by insurance company bullshit and a missed fax to Pfizer by a nurse practitioner I’d not have nearly died in early 2019.

Whatever comes comes at this point six years in just now finding out I have the PIK3CA mutation because my new oncologist asked for a review given 40% of lobular MBC patients have that mutation. I am immediately dumbstruck as to how Stanford missed it and how Foundation One missed it and how the heck the genetics counselors missed it.

I’m scratching my head but maybe all things in time. I have hope at my side, my cat curled up on my lap, my husband ignoring me downstairs and a world of people who love and care about me. There’s a beautiful house I am blessed to live in sheltering me. Blessed to complain about deciding what I will make for dinner when I’m fortunate to have a dinner to make. And I count my blessings for they are many and I’m aware of the hardship so many other people face I must live a life of service when I am able to.

I hope you will find more reasons to come by in year seven. Let’s see if I keep beating the house. Because we all know in gambling and in metastatic cancer the house will always win.

And for all of you who support my habit of writhing poetry heeere’s another one. Thank you for indulging me.

Return to Sender
Characteristics measure as weather such
Driving risk factors
But too late now to turn back.
And where your next paycheck comes from or
you’re going to get the food you need to eat?
The luxury of wanting to explore the world
Comes as a consequence
Of knowing there’s more
Out there than just us.
The injustice of beginning to know:
We residents of history
Never addressed or linked together and in the end
we realized that we could actually
Find just the characteristics of right now in this moment
For it’s all we have
That, and our breath.
I don’t know if it’s enough of an argument for
Transcending simply with my own air to help
Me float by
With a simple meditative fix.
A plane perhaps but by breath
I’m beginning to wonder
If it’s a hoax or too complex.
With so many risks
Such factors - what did you decide to notice?
To hug chemicals regardless of history’s exposures
Or enter into a race so to predict
The depth of pockets of children picked to share characteristics
Just like the ones who are real that’s one reason why
The individual impossibility of me
Having been exposed to intervene or change the outcome
Yet I know my kind of density.
People often talk about it as if it’s what changes as
A response to differences in stress.
Do you remember how many we saw yesterday
wondering whether we have enough information we think we do of
The particular and of the extreme
Yet it’s not like we had to ask.
Questions like who is significantly greater our daughters or
Our grandmothers?
Take the injustice of abandonment.
Beginning to uncover pots of stews
Cut up cubes of meat and potato bright carrots and dulled parsnips
Cut into pieces meant to intervene that create need out of want?
Yet it might give us some real information about why systemic and historical vantage points
In the end in our control, our personality changes
The how we and the science
Of who we are now
acceptable or whether to bet
The risk of results for
Telling out to the world
for hope for exposure?
Our right
in these hard days to argue against
Conversations
and the social networks of
women are stark as anything
Growing up to be a silver bullet and to provide important priorities of what we might do to stop this now
and be sure it’s
Done.

Metastatically “Normal”: new, used or unrealistic?

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.

Happy Cancerversary
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.