I’m Well Aware, Thank You, Breast Cancer Awareness Month

This post won’t leave you feeling good though I hope my words help the understanding of why it’s hard for metastatic breast cancer endurers to get excited about Octobers. As BCAM finally came to a gentle close on Halloween – Breast Cancer Awareness with 30 days dedicated to breast cancer. This year BCAM messaging focused on racial inequalities with access to quality healthcare and new immunotherapy and targeted medications that entered the market. Yet the cancer community only dedicates a single day out of 31 to metastatic breast cancer- one day to raise awareness for 150,000 people who will die. And MBC patients primarily participate in the clinical trials that bring medications from lab mice to human trials to market. Without us, there’d be less innovation and slower time to market and more lives lost or at least more lives damaged by very difficult chemotherapies.

I’m not thrilled with the sexualization of BCAM or the pink-fuscation of the real issues in our lives – my “rosy lunettes” – thank you Moira Rose from Schitts Creek (a must watch avail on Netflix if you’ve not had the pleasure of laughing out loud at least 10 x per episode and laughter is great medicine) – but I don’t know how to say to people that although I don’t look that sick outside, inside I’m a big mess of chemo thrashed and cancer smashed Bones and Organs. And it sucks that MBC gets one stinking day during BCAM. Hey, we should at least have as many days as a ratio of a percentage of people who will get secondary or metastatic breast cancer (40%) .

Unfortunately, 2020’s BCAM found itself rightfully overridden by COVID19 and unbelievably overshadowed by the month leading to craziest election with largest voter tallies in US history. Maybe it’s me but BCAM did not have the same messaging nor the same intensity as in prior years.

It’s a very strange and ugly time in the United States. And the virus doubled down on the isolation and depression that comes with a metastatic cancer diagnosis. People found the right excuse for not visiting or helping those for whom they didn’t even believe were as sick as we were. I suppose COVID19 helped with the guilt and provided an iron clad excuse for not seeing us. Thanks, I appreciate your conscientiousness in not wishing to potentially impose germs on my already overtaxed immune system.

Spoiler Alert

We all die. I know this so please quit telling me everything dies and everyone’s going to die from something. Yes. Thank you for the news flash. The only one I want to see tonight is the election called already for Joe Biden and Kamala Harris (whose historical importance is shrouded in ugly Doritos dust by that fat Covid super spreader who will throw a big tantrum when he is forced to leave the Trump oval tower.) I bet he’s made all the sinks gold like his gaudy ugly Atlantic City monstrosity. But I’m off topic. Blame it on chemo brain.

Who’s Zoomin’ Who?

From a fire hose to a dripping sink, the hours spent on Zoom calls, in virtual conferences, and engaged in blogging, tweeting, and posting our truth have become another of 2020’s strange punctuation marks. An umlaut over the “o” in “you have cancer.” My god. And I did my work with Living Beyond Breast Cancer and our hashtag campaign #fourforstage4 – I posted here earlier in the month. But again, not the bang we hoped for in the shadows of Covid.

Personally Speaking

My husband says he doesn’t read my blog because it depresses him and he believes it’s about him rather than for him. I live in a completely different reality than he does. The reality of death is no longer an abstract definitive of every living thing born into this world. It’s abstract to the majority of humans and I seriously doubt animals and plants think about their own death because foresight separated us from the natural world long ago. It gave us the beauty of language, of math and of science. Those utterly human inventions that provide us with life-saving healthcare innovations and also kill us every damned day. You’re a smart bunch so I won’t elaborate to the cliff and shove you off to tumble to your fate at the bottom of a canyon on the natural end of the story.

As far as my husband goes, I think it’s more that he’s afraid to read the blog. I’m sure once I die, he will take comfort in hearing my voice in my words. I started writing the Cancer Bus as a gift for him to hold onto a deeper part of his wife as a widower before his time. We’ve been together and weathered many tsunamis since we met 14 years ago this month. We joke that we are still on our first date because we’ve been together ever since. I may bitch about him but he’s a brilliant and funny and a giving soul who’s so interesting I’m still held up by his love and our amazing friendship and trust. Well, most of the time. So trash lightly on the poor sod. No one signs up for this and 50% of husbands or significant others leave their female companions after she is diagnosed with MBC. Half. How pathetic. Only 3% of women leave their significant others – women or men.

Now, four plus years after I began writing here, this blog became much bigger than a long love letter and than myself. And it’s nothing like I originally thought it would be. But the day I heard the words “you have terminal lobular stage four metastatic breast cancer with bone inclusion” I felt like a dead deer in the tail lights of a hit and run driver’s speeding car. They don’t like looking back. The doctors at the hospital didn’t care too much for my kind of hopeless case – the incurable.

Clinically Insane

But things changed between March 2015 and today. The clinical trials that were well under way like PALOMA 3 and PALOMA 2 – giving us Ibrance and fulvestrant as a CDK 3/4 protocol for hormone receptor positive MBC endurers. This pretty horrific combination of medications added years to my life. I cannot thank those women who gave of themselves to participate in those studies, the majority of whom participated not knowing if they’d survive the trials or of which they’d even reap the benefits.

I’m pretty impressed with myself sometimes but mostly my life isn’t a pretty picture of regrown hair and glowing skin. I’ve taken to cancer endurer given that’s how it feels most days. I endure the pain, the many forms of collateral damage thank you Dr Susan Love, and I endure…my life. We carry on best we can knowing our bodies are going to turn on us sooner or later hopefully later and kill us. But we all pray we are part of the growing small % of stage 4 breast cancer endurers (courtesy of Rudy Fischman) who will live beyond the 2.6 year average mortality from diagnosis. I’m lucky to be here. But it’s not a gift and I was fairly self aware before so I don’t have a happy happy joy joy pink fairy dust farting attitude. I have resilience and humor, hope and tenacity and that’s what I think keeps me going. Oh and I’m in a great deal of denial, but whatever works.

What. Ever. Works.

Resources for Living with MBC from cancerconnect.com

Metastatic Breast Cancer Project: Patients driving research for genetic understanding of metastatic breast cancer
mbcproject.org

Cancer Legal Resource Center
disabilityrightslegalcenter.org/ cancer-legal-resource-center

Connections to advocacy groups
advocacyconnector.com/search

Approved treatment guidelines for metastatic breast cancer
nccn.org/patients/guidelines/ stage_iv_breast/index.html

Free downloadable app for organizing and keeping track of appointments, meds, side effects, and more
icancerhealth.com

Survivorship care plans
cancer.net/survivorship/follow-care-after-cancer-treatment/ asco-cancer-treatment-and-survivorship-care-plans

Insurance and financial assistance
patientadvocate.org

Social network portal
cancerconnect.com

Employment rights
canceradvocacy.org

Clinical trials
clinicaltrials.g

Brain Cancer Diaries the Poetry Episode

www.youtube.com/watch

That link will take you to the Poetry Episode of The Cancer Diaries.

I want to thank Rudy Fischman who, with inoperable brain cancer, uses his talents as a video producer, interviewer and rising star in editing and special effects to give us a guided tour into his life. He spotlights, with humor and his brand of edgy yet polished video blogs, the reality of living with uncertainty as well as the physical and emotional effects of his disease on his entire world including his wife and daughters.

He invites guests along the way and in this episode he invited myself, and two other poets, on of whom died before he could see the final result. Rudy did Ben North justice reading a poem called, “My Father’s Son,” and who’s chap book of 33 poems called 33 Poems is available on Amazon. Oddly the day the video was released my copy arrived, after nearly 3 weeks waiting, on my doorstep.

I admit I look like I just had several radiation treatments, because I did, but he captured my heart on the video and I cannot thank him enough.

Rudeman, you rock.

You can find Rudy on Facebook, Twitter @fschmnn and YouTube under Brain Cancer Diaries, and I highly recommend you subscribe and share amongst the cancer community and outside. In particular, this episode highlights the intersection of writing and cancer and the therapeutic effect that putting our stories out there in whatever format we feel good about brings others into our lives and transforms everyone. That is everyone who reads, listens, watches and learns from us and with us.

Ashes to Ashes

Radiation in my beggar’s

Bones all lit up

By a lantern flame

Flickering like a firefly

In a canning jar.

I stand around the ash can

To warm my hands.

Sipping bitter coffee

Waiting in red ragged flannels

A shiver cuts through an old alcoholic

Outstretched hand

Rich with my new round of rye.

Don’t worry this

Helps with integrity

Believe in the beams

Words like Fractionated

And decisions like tattoos

Are stolen from real

Life I’m in a propaganda

Movie. Before the main

Attraction. But it’s all fiction.

10 laser beams on the spine

Just leave me alone eaten alive inside

I never knew such exhaustion existed.

Offers of investigational risks,

I fall again

Crumpled under the criteria.

Unfit for trial,

Back to the war on cancer

I turn everybody over to

Real criminals

The 8mm films of

Nagasaki and Okinawa

Bikini atoll

White Sands desert observers

All turned inside out

Dying of cancer

Years after the

Photographs turned

To negatives

Where the darkness

Reigned supreme.

Is this only a stomach ache

Does my headache

Mean anything to

Those pictures

A science of an

In exact nature

Looking for snowballs

In hell.

No scarring and burning

It’s deep and linear Acceleration radiation

But upon waking up from

A dream I scream

Silently as the fallout

Covers statues with

Dirty with wakefulness

Interrupted by exhaustion

Dropping me into a dream

And my beggar’s bones

Standing around the ashcan

Where all the incarcerated burn.