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.

Is it Possible to ever cure Cancer?

Let me share my response to that night in the hospital when a group of medical experts told me I’d die within two to three months from metastatic cancer:
No, I won’t. Sorry but I don’t believe that’s true. Let’s get this fluid out of my abdomen and revisit your prognosis.
I’m still here four years later.

Will there ever be a real cure for cancer?

Statistically speaking, the numbers lead nowhere with regards to a panacea cure-all for cancer. Cancer in all of its forms, stages, intensity, aggressiveness, organ, system or body part, metastasis sites or primary tumor size and, genetic mutation, (deep breath) and what our cancer finds delicious to say “nom nom” to like hormones and cortisol to name a couple , are about as different from one person to the next as are the specifics contributing to every human being’s individuality.

Would you guess that may indeed be why a cure seems so out of reach: there’s as many kinds of cancer as the number of people diagnosed with cancer. I am not a specialist of any kind, medical or otherwise. But in the course of research and education there’s no denying that I’m lost in a sea of answers to so many different questions that I’m swimming in an ocean of data, drowning in an eddy of statistics and numerical analysis.

Throw me a lifesaving device or a piece of wood. Wood floats, as do witches, recalling the scene in Monty Python’s Holy Grail, where the medieval idiots guess at what would indicate if a woman were a witch or not. The one on the giant scales looking annoyed and rather silly having been disguised as a witch by the villagers by using a carrot tied to her face representing the nose a witch would have. Some days I feel like her, trying to scream out my innocence in the injustices I face as I’m asked what I may have done differently to not have been diagnosed at stage IV. Village idiots, indeed.

Let me ask this: how do we find a cure for cancer when the contributing factors include everybody’s permutation of lifestyle, environment, stress, genetics, psychosocial situation, economic status, race, nationality, religion, spirituality, etc.? Is the truth with regards to questions like “how long do I have?” found in researching and reading reports and data underlying findings from clinical and other types of studies?

I can’t say that’s possible since the relative weights of each contributing factor changes by person. Factors including not only the type and aggressiveness of the cancer itself, but the historically significant factors adding up to the moment of a human life when the words, “I’m sorry but…” are murmured. Given this set of cumulative influences, the prognosis differs for each individual, albeit sometimes ever so slightly.

Neither diagnosis nor prognosis is meaningful when you ask a doctor. A response to either intensity or time may contain the following phrase: the statistics show X, however, everyone is different. I’ve not heard one answer from an oncology, hematology, or internal medicine practitioner in which that caveat wasn’t kept in a box. I suspect it’s a CYA move to a greater or lesser degree. But I honestly believe they simply do not know, except for baseline statistical analyses with the outliers not plugged into the median mortality numbers.

Some people do not want to know how long they’ve got to live, and there’s nothing wrong with taking the ostrich/ head in the sand or cover your ears and hum “I can’t hear you I can’t hear you!” approach to a potential prognosis. And what does it really matter anyway? Other than the most frightening, or relieving, time comes that we’re told to go home and kiss everyone we love goodbye and to get on the phone to hospice. Perhaps then?

But maybe…

Even in that case each person is so vastly different in every way… lifestyles, genetics, responses to chemicals and radiation, how our immune systems can step up to the task, how damaged we were from the start and before the diagnosis, etc. Further still, the prognosis is even influenced by how one responds to the news. Again we have to weigh our ability to focus on what we can control: our psychological health; our physical health aside from cancer (such as nutrition, exercise, smoking, and drinking); our determination to live and try novel approaches without becoming brainwashed, or standing frozen like a deer in the headlights.

“This isn’t to say we’re not making progress: more people are beating cancer today than ever before. Survival has doubled in the last 40 years. And half of people diagnosed will survive their cancer for more than 10 years, an all-time high.” (Cancer Research, UK, “Why are cancer rates increasing?”
https://scienceblog.cancerresearchuk.org/2015/02/04/why-are-cancer-rates-increasing/)

Progress, yes. But what more do we really know today if indeed the rates of diagnosis have reached an all time high? Indeed a cure may be a pie in the sky. Or a pie ready to hit us collectively in the face.