People Like Me

Oh, I’m tired of being home and afraid my immune system won’t fend off COVID19 or symptoms that can rob me of my metastatic terminally ill self. I decided after overthinking this post I’d relate an event that occurred about a year into my dirge towards death. A countdown -or would you call it a count up to the number of days I have left in this body that carry’s my soul from place to place, night to day, breath to death? Here’s a chapter in the last five years I call, “people like you.”

People like you…”

The nurse practitioner blew her raw red nose into a white, rough hospital-grade tissue. Clearly battling a bad flu, her mouth exposed over the face mask she’d moved beneath her chin, moved for her comfort. Defending a position sitting on a stool with both legs and arms crossed, she spoke at me while spewing her germs throughout the infusion center. The chemotherapy infusion center, where people’s ability to combat anything more than the cancers each one of us came to cure. People like us all prayed to our gods that we’d find a cure here. Some of us, people like me, could only hope to stave off death a little longer through enduring therapies that might also kill us. People like me.

Out of this contagious little Typhoid Mary of a nurse, came words I’d only heard once before, generally mumbled at people like me by men in mullet hair cuts, smelling of cigarettes and motor oil. Of course in the southern state where I’d lived the largest percentage of my life, a constant tug of war between cruel epithets and self deprecating jokes were cracked in reference to my religion – Jewish. Now, my long heritage would turn on me again, because “people like me,” in this case ashkenazic Jewish women, are genetically predisposed to breast cancer.

We have the honor of carrying the BRCA Genetic Mutation discovered in 1996 when the human genome was mapped out. There were eight original tribes who long ago set out to populate the earth with too few in the gene pool to wash us clean of this hideous mutation. Those who migrated to Eastern Europe were called Ashkenazi. Seems the diaspora spread us far and wide but not far enough .That and the environmental stressors on our bodies in the post industrial world created a perfect mix – just add hormones like estrogen and a first or second line relative with breast cancer…

Back again my mind wandering at the dull drone of our nurse practitioner – tuning her in as if a UHF channel on my little black and white TV in my bedroom at eight years old, alone in the dark up too late watching “Godzilla vs. Mechagodzilla.” I looked at her as she said, “we don’t operate on people like you.” Blink. Blink.

People like me? People married to a guy named Craig? 51 year old women? Jewish women? People who’ve traveled the world? Who know how to bead jewelry? Whose parents both died in the past three years? Who earned honors degrees in English? Who could talk by the time they were six months old? Who grew up in New York City? Who lived on Miami Beach? Who loved singing? Who swam and were lifeguards? Who have two stepsons but none of their own children? Who love deeply and give compassionately? Who cannot believe they cannot hold a full time job ever again? Who never imagined that a palliative oncologist would become the most important person next to their spouse? To whom do you refer?

“People with metastatic breast cancer, that’s who.”

“Oh, you think so? Well, you’re wrong. And let me tell you first to please put your face mask on properly so you don’t pass us your awful germs and secondly don’t dare come to work sick ever again. Next, understand that all patients are different, with different constitutions, different kinds of cancers and some of us were even diagnosed at stage IV. And not because we are negligent in getting our mammogram, but because we have such dense breast tissue. And if you’re not a doctor how dare you tell me what you believe my therapy should or should not contain in its proscriptive recipe. You have no right to be here sick or nor the credentials to know what will make me better. I know there’s no cure for me, but I dare say people like you keep people like me from getting the benefit of life and a larger slice of the cancer research pie. So get out of here and you will never speak with me again, because people like me do not need the pessimism of people like you.”

I looked into her now tearful eyes and found no pity in my heart. I found only my fierceness and my tenacity – the qualities of spirit that keep me going even through the bleakest times of my life – and as she silently stood to leave I apologized for upsetting her. But people like me don’t have the time we used to waste on ignorance and behavior that required our patience. My words, blunt, yet sharp like a surgeons scalpel, had filleted out a piece of that thoughtless, careless person who knew nothing about me or anyone even like me.

So people like me, with hormone receptor positive, metastatic breast cancer and some bone lesions to prove it, can get lumpectomies to improve their mortality. We can do things that defy the odds. And we will do everything we can to cling to this light we call life for as long as it will have us. Our beautiful, full and rich lives in which we seek only to live and find compassion in those around us as we rage at those who speak from a platform of ignorant generalizations.

I am the only me that has or ever will be.

Don’t forget me.

My Sad Week and Report on The Global State of Affairs of #mBC #MetastaticBC

www.breastcancervision.com/sites/default/files/review-mbc/decade_report_full_report_final.pdf

This is well worth your time to skim or even fully immerse yourself in, and I’d say is still relevant as far as attitudes and education go. Especially of advocacy.

I’m feeling sad this week as I should have been in Philadelphia with the Living Beyond Breast Cancer 2020 conference getting trained up and becoming one of the honored selectees to represent and act on behalf of the people who need it most – the patients. And become another voice to deliver the messages where they’re most needed. I’m really down because we couldn’t get a real story from our government to stave off a crisis. We were lied to. Cheated. Made vulnerable.

And I’ve not wanted to ever hear – don’t mention you’re terminal illness if you wind up in the hospital with the virus. You may not get a test or even a ventilator because you’re dying anyway. What if someone more valuable or worthy arrives?

Here’s a poem for you and my tears track around it like the little girl just learning that life means death. I hardly need to explain this to anyone reading. I love you all.

Erasure

Sad, long shadow-colored faces stare out from my past,

As time sits in my lap like any child.

Her wheaten braids, long

Punctuated by red ribbon,

With hands worried raw

Her eyes like a glass doll’s,

Wise with false memory

From fables and lies.

Comforting her with

Neverlands and evermores

I name her Tomorrow —

Yesterday’s taken.

Somewhere a darkened classroom with every wall covered

In blackboards time waits for me.

Wispy white chalk ghosts pinned by a futile hand

Tonight’s erasers coughed up puffs of smoke

Clean them free of my numbers and your letters as

I add them together.

Can I call upon anyone to raise their hand

For the answer is sometimes so clear

But the corrections

The incorrections.

Out in the yard I saw the remaining clouds,

Silver shivering unlined,

Too light to stay and easily blown away

At once leaving only light

Filtered into my pin pupil eyes.

And I without warning and against advice –

I stare into the sun.

Overcome by warmth in my extremities

From over the hills a white flutter appears.

It’s not a bird, the cloudless sky does oblige

Without wind. What fell at my feet:

I lifted up a note to: me. Please return

To: Eternally. He asks for a promise:

Now, here, you and only you

May love capture, like a photograph only

Just enough for talking too much to laugh.

What’s eternity’s address

The letter remains in my pocket

And waits for me to join

The rest in time and peace of mind.

Prostate Cancer Strikes awarded the #1 best new prostate disease ebooks to read in 2020!

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— Read on gogsgagnon.com/2020/02/21/prostate-cancer-strikes-awarded-the-1-best-new-prostate-disease-ebooks-to-read-in-2020/