Entering in

This fabulous post by Abigail, who like me has stage four metastatic breast cancer sums up what we get, need, and want from people in our lives. She uses expectations and use boundaries as my shorthand. For me expectations leave me open for disappointment while boarders close off the space in which I must be strong and not let people, no matter how much I love them, cross. But ultimately we are philosophically aligned in this area – and we share the same cancerversary March 25th. Give us a little of your strength on that day. It’s a bittersweet yearly event. Celebrating seems almost illogical but so does being down and angry. So I cannot stress enough how much I need – and I cannot speak for Abigail here – on that day to have huge amounts of love sent in my direction. It’s like celebrating when this whole COVID19 global disaster is over. I think it should be quiet and filled with love and hope. Just like our cancerversaries.

Read on with Abigail…

I’ve written before about Holding Space for others, i.e., sitting with someone in crisis rather than trying to fix it or give advice, and the Ring …

Entering in

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
Isolation
Fear
Uncertainty
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:
Infection
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.

Meditation

Please allow me to share a current meditation with you.

In quiet moments, I sit relaxed listening to the fireplace: the sizzle of the wood and the clicking of the cast iron as it expands with the rising temperature, the energy coaxing a well timed 1:4 beat in the background for my chant. Sometimes I may whisper the words to myself and other times spoken only to myself in my mind.

Sometimes I’m still or others I rock or sway gently side to side or front to back. All the while it’s important to push my thoughts out from my mind – I use an imaginary hand to shoo them away like flies on a picnic blanket. No violence, just a helpful movement of the pests so concentration on the words of the meditation can rise like the sun enlightening my mind…

All things in time, all for the reasons on which my life tumbles and turns to the songs of the spheres. Remind me as I am a human being, the universe tells me when I need to know: all is well. All is well.