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.

2 thoughts on “Metastatically “Normal”: new, used or unrealistic?

  1. You always put into words so succinctly what you and other Stage IV are going through and feeling. Each journey varies in its own ways with their family life, demographics and the care they receive, but at the core of it you’re all getting up everyday to do the same thing- live with Stage IV. I understand through you that the fear (of new pains could mean a spread) never goes away even at your stage. I’m not sure why I never thought of that- ignorance most definitely. All my love my friend. #FuckCancer

  2. Dear Ilene
    I feel empathy with you on so many levels even though I’m not a metser. My doctor told me I was cured yet I will never be free to think that when I read about yours and others journey into metastatic bc. I’m sorry for your lack of support from your SO. I wish I could give you a big fat pink hued hug…… tongue in cheek. Do I wish you a happy cancerversary when the occasion is our bodies turning on us? Those fickle lemons…..at least you still have your sense of humor which I noticed more in this last post!!!! That’s a good thing (damn you Martha Stewart)…
    love and hugs anyway…..

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