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.'

Let’s Stop Calling Metastatic Breast Cancer “Chronic”! | Nancy’s Point

Let’s Stop Calling Metastatic Breast Cancer “Chronic”! | Nancy’s Point
— Read on nancyspoint.com/lets-stop-calling-metastatic-breast-cancer-chronic/

This is an important and well written post by my good friend and part of my virtual support network Nancy whose books are outstanding if you’re just diagnosed, if you’re deciding on reconstructive surgery, if you’re a carer (better word for care giver), or have any kind of cancer.

This post, although I’m quoted in it, has quotes from around the blogosphere by some of the most well respected writers you will find – not everyone but many. I consider these people my friends and like Nancy, an integral part of my support group. It’s hard enough being so isolated by those who you thought would always be here for you and disappear as though cancer were contagious. Afraid of mortality and of not knowing what to say to us, we forgive these who don’t understand the huge delta between chronic and terminal. Metastatic cancer is terminal. We will die. Inevitably. Read on and follow Nancy’spoint.com you’ll be happy you did.

Nancy’s Point: Metastatic Breast Cancer, Chronic or Terminal

Nancy’s voice on chronic versus terminal taxonomy brings up several important points and quite a lot of discussion including on twitter. I highly recommend reading this post and not only because Nancy featured opinions on this subject from myself and several other voices in the metastatic breast cancer community.

Possibly there’s confusion amongst those who do not have breast cancer and certainly those with cancer who don’t have stage 4. We all will surly die. But when the prognosis is certain death with a diagnosis of any metastatic cancer you measure your life in teaspoons not gallons. Days not years. Lunches and not vacations. But I’m not shy nor do I keep my diagnosis to myself.

Some see stage 4 cancer as a private matter and do not want to be branded with the purple M. We aren’t treated or approached the same way others who will recover are treated. People tend to shy away seeing death on our shoulder and no one wants to have a constant reminder of their own mortality as I’ve argued in other posts. As in this post about cancer and friendship. There’s an awful lot to be said on this topic.

But I do hope someday that MBC will get the research power to become a chronic manageable illness. That all cancer becomes chronic. But for now hear our voices and join the conversation.

❤️Ilene