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

Layers of Acceptance

losing our lives and the cost of indifferent behavior leadership on the individual

How do you feel these days? Anxious? Nervous? Depressed? Incarcerated? On house arrest? Disrespected? Cheated? Angry? Depleted ? Bewildered? Mistreated?

Do you feel a complete lack of deference to the administration in power in the United States?

Deference (also called submission or passivity) is the condition of submitting to the espoused, legitimate influence of one’s superior or superiors. Deference implies a yielding or submitting to the judgment of a recognized superior, out of respect or reverence.

Wikipedia.com

Lately the windows seem like walls. The walls seem like prison bars. The front door like a vault passage with an unrepentant encryption lock. From the last fateful weeks of February 2020, I’ve been in lockdown and need to climb up Mount Kilimanjaro past the cloud layer, light headed from a lack of oxygen(kind of like if wearing a mask and breathing in my own CO2) to gain another level of acceptance. The insight into what life truly could look like when someone says, “well, could be worse.” I think the current situation with COVID19 maybe the “worse” case referenced in that vague statement of what could happen. And it’s so frustrating. We had several opportunities to stop the spread.

Now, consider this: the CDC is saying the situation will probably last until early 2022.

I feel cheated of my time remaining on this conscious plane in this terminally-ill body. There’s a mockery of global leadership just idling by in the Oval Office. He and his cronies couldn’t care less about people’s lives and what their lack of planning has done to our country. If you watched the second and final presidential debate for the 2020 election. You listened and heard the leader, of what I’ll now call our post democratic society, lie. And lie and lie and lie without putting forward answers to simple and valid questions that effect me and everyone else with a terminal illness.

In cheating their way into what is considered the singly most powerful position in global leadership they cheated us from our precious time with people we love. Cheated us from traveling to visit one another.

Thanksgiving cannot take place over a zoom call. The lifesaving hugs so integral to healing by releasing endorphins into our bloodstreams cannot become real — I had a virtual dance party during a Living Beyond Breast Cancer (LBBC.org) that at first provided some fun. But it’s hard to dance to the beat if there’s an elephant in the room stepping on my feet.

At least with – all the universes willingness – Biden in the Oval Office and Senator Kamala Harris up the hallway as Vice President, I won’t have the stress that I’ll lose my health insurance and my stage IV cancer will be treated as a preexisting condition.

Being forced into retirement at 49 and on disability for the rest of my life, their decisions significantly effect me and others in my situation. Some already have to a pretty large degree. Now we have less access to our physicians. The life sparing clinical trials have all but slowed to a halt because people who are needed to participate cannot travel – this past four year period of time will have lasting impact on so many people. The worst of that impact is our very mortality. It scares me to think the entire metastatic cancer population will be completely wiped out for reasons I cannot reconcile in my heart.

So I think having a metaphysical and mystical experience will help to decrease my anger and anxiety. There was enough to reconcile before this tragic era. Now the tragedy will take decades to right itself if it ever even does. There’s no new normal. We will all be feeling a shift in our lives from now and through the end of days. Talk about the butterfly effect – this is more aligned with a swarm of locusts effect.

So please vote. Please peacefully protest should some outrageous stunt a la Pizzagate and the disintegration of the dream of having the first woman president ripped to shreds. Let’s not forget that when Sen. Harris debated Mike Pence it was a historical event worth celebrating.

Instead a fly that for over six minutes flew around the white head of an ill-elected Vice President became the news story of the day. Proving we are in a time of lies and the bullshit that took our lives and left us to die like carrion on the side of a lonely road. But no one will be by to pick up the bodies. The vultures are already picking at our bones.

Irreverent hospital signage. No shit, that’s how I wash my hands? Thanks Stanford! A university education can only go so far

With that I’ll leave you with a few recommendations of cancer stuff. Listening instead of talking, opening up rather than shutting out brave voices and kinder hearts unafraid to discuss things as they are. Reminding me to live in the moment rather than putting my anger into the world. There’s enough of that going around these days and I’d rather hear some people I have come to know and care about personally. Listen and watch these wonderfully brave people – they’ve gone yards ahead of the written words you read here and it helps me to grapple when the silence is deafening:

Our MBC Life one podcast totally focused on metastatic breast cancer, thank you ladies. Let’s support them as they get their feet under them.

Thanks, Cancer! Leanne and Mimi discuss politics and cancer in their latest podcast

https://www.youtube.com/c/BrainCancerDiaries Rudy is absolutely honest and irreverent and has inoperable brain cancer