Happy New Year?

This new year felt awfully late to me. Do you feel like this past year’s already a long time in the past? We hope that every new year, albeit a construct of human needs to mark time of another revolution ‘round the sun, the axis tilted and the earth on its eclipses as far from warmth as we can get having just changed seasons on the winter solstice, we sought to find joy in the chilly night air.

Looking forward we engage in a toast, some with promises to themselves of improvements, some with a toast of bubbly in a champagne glass – “tink” – fireworks, a ball dropping to no one physically in Times Square this year. Perhaps a hug if we were lucky enough to be with another human being at one second after midnight on the cusp of another 12 months. All sorts of celebrations feel long overdue – without a potential date in sight to partake in person in wedding receptions, dinner parties, funerals, religious gatherings, or spiritual circles. Yet our lungs filled with the fresh air of hope, January 1st at 12:01 different come midnight. That’s if we weren’t intubated in some lonely ICU, or without a partner, or a close friend to sit and hear the world sigh. The world didn’t hang a new air freshener on the rear view mirror and the pandemic didn’t change for the better. Unlike Cinderella’s carriage, it instead turned into giant rotting pumpkin filled with rats.

Those carriages pulled up to the castle and out teemed armed vermin in a violent riotous crowd. The rats invaded the castle with their small minds filled with hatred spurred on by misaligned jingoistic propaganda and ugly rhetoric. They left a dead stinking red herring to lay bleeding on Pennsylvania Avenue. Now the whole world smells slightly fishy. Somethings not right, is it?

A big can of Hope – the virtual disinfectant

Yet there’s hope. Hope never dies but like energy changes form. It shifts. Shift happens. I hope the world shifts slightly to allow an immense healing to take place the likes of which no ones ever seen – I can’t imagine another time ever like this one – and I hope it’s an opportunity to rethink our approach to sustainability of every kind: physical, emotional, environmental. And we should not forget. It’s so easy to forget and fall back into old habits. Like resolutions unkept. We have to remember and recall what’s important and as close to reality as we can get.

Two million dead is a hard number to forget isn’t it?

Terminal Cancer, the other pandemic disease

Metastatic cancer doesn’t allow me to forget it’s hiding out in my bones. It jars me awake into the present should I ever forget that my health comes first and that the body I call my own is temporary: a rental in a non rent controlled apartment. At some point it won’t be feasible to live here any longer. It will become a slum. There will be no renovations, no more past due extensions. And my body won’t live up to code standards. I will shift my hope to move on to the next place away from the here and now…

Love and the good grace of the people who support me yet I’ve never met in person are all on my heart this year. Some have died and three women in particular are with me in spirit as I sit in bed with my cat son Simon wishing for sleep to come my way. One friend died out of the blue – she was a vibrant advocate and writer and was giving me some guidance in both areas.

So alas, may 2020 become hindsight and remain in our rear view mirrors as the wheels spin out from the dirt roads onto the pavement. Back in the sunlight and out of the shadows of lies and deceit. Indelibly connected to one another like the sun and truth. The truth be our guide. The sun open our blooms to open to full blossom.

The Disasters

I heard words I knew once were forbidden -
My fortune wasted on life’s misgivings.
Forcing down eight courses, poisonous drink
How the blunt force of words causes us to think
Drowning in the fuel, the entire bottle.
Get in the car lock the doors, choke the throttle.
Drive our team of shining horses farther and faster -
Each whip snap stinging their backs with disaster.
Delete my pages, these ugly words.
Tossing them like breadcrumbs to the birds.
Release from their cages hungry beasts,
Entice them out with bloody raw meat.
Into my neck a needles plunged -
My voice so hoarse, the cat’s got my tongue.
Cook the bones until they’ve boiled.
Stained by trash, our clothing’s soiled.
Lay down gently, close your eyes,
Focus on the breath now say goodbye.
Softly lay your head down and hear the whispers,
'From every woman: born my sisters.'

Exponential Isolation: COVID19 and Metastatic Cancer

I’m no good at friendship because I’m no good at time – I’m illegitimately alive for five long years a full 2.5 more than I’m supposed to be allowed— so take my words as such. As the truth of someone who may as well be invisible most of the time. We are so much like the post apocalyptic zombies that can’t be killed. Not by the usual means of murder anyway. We refuse to leave our loves behind, and jump across the river into the mystery.

It’s always preferable and more honest to express my truth. While my truth – my voice – I’ve just recently learned to appreciate, which might sound derivative, I live my truth every day I get out of bed and wander softly on sore feet with cracking knees and neuropathy shooting fire down my arms to the tips of my fingers. Until the opioids kick in. Until my one little sneaky treat of a caffeinated beverage for the morning or sometimes, afternoon wake up call. And now COVID19.

The complaints of the victimless victims of social distance I find ironic and darkly comical. These complaints I’m finding remarkably similar, if not exactly the same as the social distancing each victim of metastatic cancer endures, beginning with the day of diagnosis.

Furthermore, many of my online #cancertribe – my 24/7 support system who jump into action to answer questions, give the name of a solid resource, provide broad shoulders to cry on, and cheer when the news from long awaited scan results come back positive – meaning good in MBC language bad I’m virus language. We all seem so in tune with what can hurt us, that a mere change of the wind can sometimes sends us running for self quarantine.

There’s no exception with the COVID19 virus. We knew to stay put until we heard otherwise. The emotional fall out of metastatic cancer would clearly drive the rest of the population to post traumatic stress disorder. Yet these are the exact emotions I hear from Joan and James Buck (I’m bored with the classic anonymous names Jane and John Doe) are so annoying to the rest of the population as they get through a pandemic that will kill less people than metastatic breast cancer.

Let me share an MBC daily emotional rollercoaster.
Self image
Financial destruction
Inability to see family
Loss of mobility
Managing stress
Grief and loss

While in treatment with side effects including immune suppression, which are most of the chemotherapies and most of the targeted therapies. They’re not quite as targeted s we might like but it’s better than death. We stay healthy by choosing self-imposed social isolation. Most people I’ve noticed don’t cover their mouths when they cough or sneeze under normal conditions. I’ve now been home for three weeks, as the writing was on the wall. And although for many the list of at risk populations include chronic diseases like diabetes, heart disease, and AIDS, I’ve rarely heard cancer in the list. And I’ve not heard specific to COVID19 metastatic cancer. Here’s a list of what MBC patients can do to generally avoid infections, and wouldn’t you know it it’s exactly the same as for COVID19. Nothing new here for us:

  • Wash your hands well and often, especially after using the bathroom and before eating. You can also use hand sanitizers.
  • Take a shower or bath every day.
  • Use lotion to prevent dry and cracked skin.
  • Use gloves when you garden or do housework, especially while cleaning.
  • Wash fruits and vegetables well.
  • Clean your teeth and gums with a soft toothbrush. Use mouthwash to prevent infections if your doctor or dentist recommends it.
    You can also avoid things that might lead to an infection. Avoid:
  • Being near sick people.
  • Using someone else’s cup, eating utensil, or toothbrush, or sharing food or makeup.
  • Eating raw meat, seafood, and eggs.
  • Using scissors, knives, and other sharp objects. If you must use them, be very careful. To avoid cuts, consider using an electric shaver and a blunt nail file instead of nail clippers.
  • Handling cat litter and other animal waste.
    Source: Cancer.net

Metastatic breast cancer will kill every year until there’s a cure. “It is estimated that 42,690 people (42,170 women and 520 men) will die from breast cancer this year. Metastatic breast cancer will cause the vast majority of those deaths.
The 5-year survival rate tells you what percent of people live at least 5 years after the cancer is found. Percent means how many out of 100. The 5-year survival rate for women with metastatic breast cancer is 27%. The 5-year survival rate for men with metastatic breast cancer is 22%.” Cancer.com

Why we don’t call MBC a pandemic I don’t know but the risk of death is 100%. Not recoverable, not reversible and with the exception of spontaneous remission no cure. Let’s call it a draw and maybe find a way to leverage what we already know about preventing infections to raise awareness of MBC after COVID19 is solved.

Stay well my friends, I’m grateful for everyone who checks in with me and know my meditations which I shared with you earlier in the week include all of you.

Much love.

And here’s a poem to think about:
We learn, like it or not: humans cannot help ourselves to the trough of information.
Our noses pressed against a shop window
Nostrils fogging the thick coke bottle in bottom glass
Like a pigs in a pen in a winter storm
Out goes the heated air in two strong gust
Reading letters imperative we experience another life not our own.
And would it be too bold to say we’d break under the circumstances of someone else?
Atlas pages so long and glossy
The light bends with each turn of the globe
Like in Israel where an agent bends spoons with warm fingers weighing the situation.
It’s so heavy that at times, I am quite uncertain I’ll be able to walk another step.
Lacing up black knee high boots and turning to leave
Believing our long term survival might feel
like a case of hives
Everyone must scratch that perceptible itch.

While remaining hopeful while
Expressing wishes like blisters
Our infection take in, take around, carry with – all the prepositions apply here.
By fully trading in your responses
and knowing the right things to say.