Hope Shifts: COVID19 to Cancer

I begin and end with hope. Born, we hope to live a long life. We haven’t a clue as to the concept of “not being” yet. It’s hard not to think about the concept of no longer breathing: rising to the sweet smell of ion charged air after a spring rain. The concept of seasons hasn’t penetrated our small forms yet. Fascinating that the eyes never grow and at birth we grow around our big eyes. Can we see more as our unfettered brains not yet cluttered with fear, with not knowing how we may find another meal. We love our mothers. Maybe because she feeds us. Maybe our primordial love grants us the will to cry out in pain, in hunger, in loneliness. As we grow into full fledged human being do we also grow into beings of more fears?

The “fears that we may cease to be” as John Keats wrote so long ago in his poem of the same title at the ripe age of 24, he’d lived in a time when the average age wasn’t approaching 80 as today in 2021. Or perhaps we grow into our hope. Maybe we hope to find love come to dry our tears from our adult sized eyes. Maybe these eyes bring in the light of hope, like the leaves on a tree draw in the sunshine to grow the fruits and flowers. Our fruits and flowers as human beings, at least for most of us, deliver the nourishment of awareness of the good in the world. Some believe in using fear for gain. My world shrinks to nothing if I hurt even a spider. I cannot imagine the feeling of killing either by my own hand or through my power over the way others think. Like in war or in cults.

If it feels like a broad topic, and it may be, it’s personal, too. What’s eating the United States, and from what I’ve read and seen, the United Kingdom, from the inside? Those who we hired by vote to protect us continue to stand aside watching m violence to drip like sweat from the pores of rioters inside the capitol of the United States. My own eyes were struck with fear as I studied a photograph of a police officer whose hand sat on the back of a riotous angry white man. Outside of the picture, he then entered the speaker of the house’s office and sat with bravado and his feet upon her desk. Within 24 hours he was arrested and given a sentence of just one year. Yet, were a black man, I guarantee he’d be a dead man. Of this I’m quite certain.

Yet there’s too much fear to face the disease of racism in such audacious act of treason. A crime against the state. A crime punishable by death. I’m immoderately unsure he deserves such a dear punishment. The brainwashing and propaganda disseminated by the short lived current administration ramped up many without facts that support the arguments of an unfair, illegal vote count. There’s no evidence as such. My own eyes wept with frustration and fear.

The reality of the COVID19 virus and it’s newly transmuted much more transferable viral brother continues to plague the world – specifically the United States and the UK. The first world countries that quickly gave us the vaccines are also hotbeds of exhausted first defenders and maxed out hospitals. We live in counties, my own Nevada County included as of today, where beds in Intensive Care Units reached 100% capacity and makeshift tents hold the sick and ailing infected by the virus. It’s as though we’re living through a war on our defensible land. A land we never thought we’d need to defend on our own soil.

Breast cancer’s not preventable by a mask. Or by self isolation. Or by remaining alone dying the holidays for a year. But we do this in some cases not of our choosing but because we are treated as though we had COVID19 all along. Our concerns include isolation and uncertainty. The concerns people about of COVID19 too include isolation and uncertainty. Do we believe the lessons of the many will translate into the care of us, the few in comparison, with MBC no matter the cause, our skin color, of socioeconomic positions? No, I doubt it. So there’s a connection between Covid and cancer. We’re doubly afraid to become ill, to be ghosted by former friends and family, to be alone and uncertain as to when we will die? It’s not if but when although the incidence of MBC has shrunk by 1.8% according to the statistics.

This country, is the same in which my own cancer center cannot give me an approximate idea of when I will receive the vaccine. This country where as we watch, we become voyeurs of a kind of war I hope to never see again. I watch with the same eyes I saw my mother bring a spoon to my mouth full of bananas and apple sauce. Such a vast amount of time has passed since I came into being as the Vietnam war started to become a reality. One of my favorite writers probably described it better than anyone. Susan Sontag who wrote “On Photography” and “Illnesses as Metaphor” was

“…probably the most influential writer on the intersection of violence and photography, didn’t buy this argument. With forensic prose, she cut through complacent apologias for war photography and set photojournalistic images of violence squarely in the context of viewers’ voyeurism.”

Tejeau Cole, The New York Times Magazine, 24 May 2018

Have we become wide eyed onlookers, ready to lose hope and lives simultaneously as the country must be bribed with stimulus checks like pornography? Have we lost hope in our own ability to find the heavy sadness of mass graves holding the unidentifiable dead who were dropped off at hospitals and found themselves alone, miserable, and dying?

Such feelings of anger well up in my heart: if we had the ability to create vaccinations against a deadly pandemic virus so quickly, what about cancer? Why can’t we put the pharmaceutical community on notice right now and give them the ability to produce an injection against something we supposedly know so much more about? Cancer won’t cause an economic depression. In fact I argue we need cancer to prop up the economy as we require less outputs from the military industrial complex. Who needs to die now in order to inject money into a false economy of unknown and unseen wars? It’s not Iraq or Afghanistan. It’s in my bones. I’m one metastatic cancer patient is worth hundreds of thousands of dollars a year – I read one figure that a metastatic breast cancer patient brings the value of an oncologist to her organization upwards of $600,000 US per year. That’s insanity, statistically speaking. Take a few hours and read through gif following

American Cancer Society’s Facts and Figures 2020 ACS 2020 Fact Book – there’s an obvious problem from the outset. Cancer by definition is a pandemic not treats as such and in my estimation it’s because were worth so much to keep alive. If death is a protest I’d rather not participate. How will you protest our plight? Will our country be well enough to participate in the Die In this year? It do we stand by and watch as we die from what seems to be preventable except in 5-10% that are gene mutations from heredity – and even then is it possible to prevent those people from diagnosis? Here’s a nice neat list pulled together of facts in Breastcancer.org latest statistics:

  • About 1 in 8 U.S. women (about 12%) will develop invasive breast cancer over the course of her lifetime.
  • In 2020, an estimated 276,480 new cases of invasive breast cancer are expected to be diagnosed in women in the U.S., along with 48,530 new cases of non-invasive (in situ) breast cancer.
  • About 2,620 new cases of invasive breast cancer are expected to be diagnosed in men in 2020. A man’s lifetime risk of breast cancer is about 1 in 883.
  • About 42,170 women in the U.S. are expected to die in 2020 from breast cancer. Death rates have been steady in women under 50 since 2007, but have continued to drop in women over 50. The overall death rate from breast cancer decreased by 1.3% per year from 2013 to 2017. These decreases are thought to be the result of treatment advances and earlier detection through screening.
  • For women in the U.S., breast cancer death rates are higher than those for any other cancer, besides lung cancer.
  • As of January 2020, there are more than 3.5 million women with a history of breast cancer in the U.S. This includes women currently being treated and women who have finished treatment.
  • Besides skin cancer, breast cancer is the most commonly diagnosed cancer among American women. In 2020, it’s estimated that about 30% of newly diagnosed cancers in women will be breast cancers.
  • In women under 45, breast cancer is more common in Black women than white women. Overall, Black women are more likely to die of breast cancer. For Asian, Hispanic, and Native-American women, the risk of developing and dying from breast cancer is lower. Ashkenazi Jewish women have a higher risk of breast cancer because of a higher rate of BRCA mutations.
  • Breast cancer incidence rates in the U.S. began decreasing in the year 2000, after increasing for the previous two decades. They dropped by 7% from 2002 to 2003 alone. One theory is that this decrease was partially due to the reduced use of hormone replacement therapy (HRT) by women after the results of a large study called the Women’s Health Initiative were published in 2002. These results suggested a connection between HRT and increased breast cancer risk. In recent years, incidence rates have increased slightly by 0.3% per year.
  • A woman’s risk of breast cancer nearly doubles if she has a first-degree relative (mother, sister, daughter) who has been diagnosed with breast cancer. Less than 15% of women who get breast cancer have a family member diagnosed with it.
  • About 5-10% of breast cancers can be linked to known gene mutations inherited from one’s mother or father. Mutations in the BRCA1 and BRCA2 genes are the most common. On average, women with a BRCA1 mutation have up to a 72% lifetime risk of developing breast cancer. For women with a BRCA2 mutation, the risk is 69%. Breast cancer that is positive for the BRCA1 or BRCA2 mutations tends to develop more often in younger women. An increased ovarian cancer risk is also associated with these genetic mutations. In men, BRCA2 mutations are associated with a lifetime breast cancer risk of about 6.8%; BRCA1 mutations are a less frequent cause of breast cancer in men.
  • About 85% of breast cancers occur in women who have no family history of breast cancer. These occur due to genetic mutations that happen as a result of the aging process and life in general, rather than inherited mutations.
  • The most significant risk factors for breast cancer are sex (being a woman) and age (growing older).

In this I shift my hope again. I shift it to the general population and their eyes – the same eyes they’re born with and will die with to my and so many others bodies that have turned against us. Don’t look away. Don’t run when you become aware of a friend or a cousin with metastatic cancer. I leave you with a poem to describe my feelings in this matter.

Beaming with Hope

Hope Leaves on
Lemon trees fruits
Subject to yellow
So one tart section
Bites all the sun.
Drip juices ascetic
The most acidic of
The citrus
The gods gift to us
Coming forward to trust
The peel’s oil, metal rust
Can take the tin
Cans bring them all back
And then
Go hone a skill
And sip a little water from
My will.

I beam with a mess
Of healing light.
I received some, too
Today maybe the perfume
Left by a sweet
Mass, blood in a chalice
Quenched as
I dressed up like a goddess.
Secretly becoming
Scarred. Interested less
In hiding.
Can I remain in a nest
Like a red robed Robin
Born from blue
Shells that belie my lacking oxygen. On a beach
A great beam of
Might from
The lighthouse mirrors
Cut out a collage
Of media mixing
Flies and I file
Away the thinking
I can fix anything
Back anew.
Single file out into
A line we become one
Place where health walks heel to toe.
My place comes
Like everyone’s, eventually.
When can I conquer the enemies?
When does the line stop? What time Will it take up to heal the world?
We’re listening.
Without the next answer
Every green sings again
Every blue sleeps again
Every color clears again
Every hell
Finds its heaven again.
Open mouths breathe in to
Blow out the candle of our spirits.
Our lungs absorb – All the tears
Our hairless heads – All the rain
Our sore mouths – All the laughter
Our frail bones – All the power
Our thin skin – All the weakness
Our open hands – All the dealers
Our empty wallets – All the takers.
The gamblers and the monks
The grifters
The punks
And the lines of the me’s and the you’s
Lose all the freedom.
To know my soul
Existed before I boarded this train:
Crossing borderless countries
I am Aimless and unclothed
And I Break in my body.
There’s no optioning
No ownership
No forever
Not even a
Time share.
This time I cannot
Work to pay
All the rent.

As a spawn of the dead
A pawn of this life
For what I deplore
And who I defend
The punch
Line without any joke
Echoes in lustrous
love
And up in the
Attics unpacked
Into those dusty
rafters of hope.

The Way Home

Look from the sidewalk into this home with me as we casually stroll our neighborhood, walking off supper.

We’re wearing masks. Not the kind made of wool sparing our noses and ears from frostbite, but a necessary covering for our noses and mouths. Hold my hands. It’s chilly outside, yet our breath stays neatly tucked inside the cotton hand sewn white facial protection from this last years’ pandemic. Will it never end, I think, as you think, simultaneously. How right Jung really was: the psychological mechanism that transforms energy into a symbol beyond verbal explanation. The mask forever imagined as a representation of all things bad in this world of ours, yet the symbol of doing the right thing to protect ourselves, everyone really, from spending another year inside a pink bubble.

We stop and look at one wildly decorated house, just a block from home. It’s brighter every year. Out in front of the neighborhood show-offs – I’d swear I don’t recall the Santa’s sled pulled by eight reindeer lit brighter than Krakatoa upon their newly tiled roof last year. We gaze amazed by the amount of careful work her husband puts into their gaudy block blinding display year after year. His wife is healthy and kept news of her recent negative mammogram results from us until one of their teenagers slipped and told our son when she saw him at work at Trader Joe’s. He said he was happy for her but he felt like she was showing off like her mother was better than his somehow, and he hugs me and heads to grab his keys. He spends the night at his gender fluid partners house nearly every night now. It won’t be long before the feathers in the nest begin taking off in the winter wind – no need anymore. But my thoughts digress so easily these days don’t they?

The family sees us gawking at the red, green, gold, blue, silver, and energy efficient extravaganza replete with articulated waiving snow people (political correctness applies to snow sculpture, does it not? I make you laugh as I consider creating a phallus to stick on Frosty the Snowman to adjust his anatomically correctness. You wait and then look away from me, the unsightly scene, frown and say you’ll miss my laughter.) From inside near the fire and 12 foot fresh cut tree decorated in peacock colors, the ten of them wave at the two of us. They wave very vigorously, almost too happy. Too many people inside. Unsafe.

We near our own home, slightly darker than in years prior. There in the picture window, framed by white flocking and boughs of pine and LED bright white lights stands a family. How sad, we think as the woman looks slightly disheveled, her hair very short, purple circles under her eyes even visible from 200 feet away. They cannot see you. It’s dark outside and light inside. Don’t linger long.

It’s a usual sight, should one be an onlooker into a Norman Rockwell painting, except it’s cut, burned, and poisoned without any a big deal being made of it by the family serving the terrine of food. The green tree’s decorations not quite right to those people in the know – still the comments will come, “it looks great,” as you reluctantly send some phone photos to your friend across the county. It looks fine. Fine for someone whose lost the spigot out of which flowed her usual unstoppable, unwavering holiday energy due to cancer. Breast cancer. Very metastatic breast cancer.

In the window three people look at the tree. It’s slightly slanted to the right. The gifts, wrapped only in the paper and plastic bags in which they left the stores they were purchased or the postal service boxes in which they arrived, sit on the apron around the base of the fresh Douglas fir. The fluffy white skirt appears backwards even to a stranger looking in on the scene. She forgot how to arrange it at the bottom of the tree. And the tree’s scent is unusually faint to her this year. The sense of smell she once used to catch musty odors under a bathroom sink, or determine the right amount of cinnamon in a pie is no longer useful, no longer part of the five senses she once controlled. This year her nose missed the lack of nutmeg in the pot of apple cider. No one dares say a word. It might be her last pot so who can forsake her as they would have before the diagnosis.

You look harder and notice there’s only one car in the driveway where there were two before. There hangs a plain but fresh green wreath on the front door. No lights outside and only a few strands inside lighting the top half of the tree. The halfway point is a marker of sorts to the point at which she ran out of energy. There’s an envelope under the tree in a Manila envelope showing off scans brightly lit of her body like a Christmas tree. Stable disease as a gift to her son and husband this year.

And it’s these pictures we will look back upon next year to remind us we were either better or worse off then, now. But the untied apron strings of you and your reluctant teen sous chef who’d rather be on Instagram or Tiktok keep him held safe to your heart for a while longer. We never do know, so sad so true, how long it will be before those independent souls free themselves from the kitchen; yet he will always remember how you showed him to cook, every holiday when he recalls to his own family, “my mom showed me…” and you live longer than that day this year. That day recalled in the coming years ahead.

We look down at our path to the front door of our home. I hope to see many many more evenings like this one. Such tricky business – to create an image of life as we know it and symbols that we all can understand – and we pass the test, looking “good” having so much energy for someone who’s terminally ill. Yet it’s not for those of us who remember every year’s commentary on the beauty of the wrapping paper, the decorations on the tree, the scent of the combined dishes at the door to greet every visitor. This image painted from memory of better days, healthier times is merely that: a facsimile of those memories.

We know how different this years’ preparations, meal, and decorations are as we shift our weight from one foot to another, one arm to the other, fewer people but the love, the love, the love is all that really matters and all anyone remembers. All those “things” represent the love. And we are set free of the resolute duty of the ties which bind us to the responsibility of yet another year of stuffed stockings filled with love.

Wasn’t that always what we really meant anyway?

My Gratitude: our virtual support group and my hope for our future

Thank you. To you my sisters and brothers who write blogs and create videos. I owe you my deepest gratitude for so openly, and with the intent of helping others like yourselves, with the therapy of your craft. By discussing your lives and fears, and in some cases, the end of your life as you experience it, I can feel all of you. I hope we will be the loosely knit, dispersed support group we’ve become, for a while to come. We make up a group of people whose bodies turned against ourselves with breast cancer, brain cancer, pancreatic cancer, metastatic cancers. and a host of other painful killer diseases.

We hope for life.

In tandem I write this blog with my own with intent. I write to begin, to enter, and to sometimes end discussions here online in the virtual world. The main focus of our discussions realize our hopes and dreams, as well as adjustments of our individuality. We watch as the shifting of hope: hope not only as a concept but mandate for our survival. We do not experience hope as an unmovable meaningless emotion. We give our readers and watchers the priceless gift of front row center seats to hope as it shifts throughout our lives in a conversation and in our actions as human. Our hopes and dreams are written indelibly, etched in time and for the foreseeable future.

Some of us take it all the way out to the end when we hope for a good death rather than painful ugly moments in and out of consciousness beyond our control. We hope that those who remain behind, who mourn our “loss” to carry out our wishes as we intend them.

We experience death.

I have spoken about two important moments in my life before and I https://cancerbus.com/2019/02/25/hope-and-the-prison-of-a-diseased-body/overflow with gratitude for them. Two deaths for which I sat holding witness as their spirits left this plane and went to one we can no longer see or visit them. While I was sitting beside my father as he was in a coma in hospice care in Miami I played music we loved quietly for us both. I’d sit and talk to him and tell him it was okay to go and not to be afraid. I sat as a spirit midwife of sorts and a Witness for my father, and 10 years prior that, my best friend Allan who died at 37 in my arms. They both gave me a gift immeasurable in a common meaning or sense of value.

The last breath I took with them changed me, each in a different way. To see the fear of not living in a 37 year olds eyes and to help him allay his broken heart with the knowledge of his impact on my life and everyone who adored him, and then to sit with dad for two weeks was as much a degree in how not to have the end of life filled with suffering and then lack of suffering, both allow me to face my own mortality in a way that’s indescribable yet quite tangible.

In the Jewish tradition when visiting a cemetery one leaves a rock or stone on the grave stones of their loved one. Some Talmudic teachings say it’s to keep the soul in the grave but I like the more hopeful version:

‘In moments when we are faced with the fragility of life, Judaism reminds us that there is permanence amidst the pain. While other things fade, stones and souls endure.’

Jack Reimer, Wrestling with the Angel: Jewish Insights on Death and Mourning

We find heroes.

There’s a person who’s presence in my life remains and always will be as long as I remain a lesson in how a single word can change a life. He said to me, “Ilene, you’re a wonderful writer. Call yourself a writer because it’s what are and have always been.” And from that day on I found another stone for my path ahead every morning or afternoon when I arose still alive. That stone allows me to put my foot on to carry me to the next and the next creating a new path in my life to carry me home. Without it i wouldn’t have found my way. Each time I write I thank him after a few moments of silence prior to the first word hitting the page.

It’s also said we die twice – once is our physical death and the second is the last time someone living speaks your name. If this is true, we will live a long time after our physical selves are no longer a vessel for our beautiful souls and for us to “see.” Our words ensure our names will be rehearsed for many years to come.

We find beauty.

I’d like to share a poem by John Keats, written in the 1800s when he was about 22 years old. Definition of what I believe describes the British romantic period, when poets like Coleridge, Wordsworth, Byron, Shelley, and of course Keats wrote. It was a short enough period but a prolific one, much like one whose metastatic cancer brings a fierce need for expression, it seems our world changed significantly with a very hard push on the enlightenment at the time, Keats said:

When I Have Fears

“[I]f Poetry comes not as naturally as the Leaves to a tree it had better not come at all,” proposed John Keats in an 1818 letter, the perfect symbol of the British romanticism movement.

John Keats

When I have fears that I may cease to be

   Before my pen has gleaned my teeming brain,

Before high-pilèd books, in charactery,

Hold like rich garners the full ripened grain;

When I behold, upon the night’s starred face,

   Huge cloudy symbols of a high romance,

And think that I may never live to trace

   Their shadows with the magic hand of chance;

And when I feel, fair creature of an hour,

   That I shall never look upon thee more,

Never have relish in the faery power

   Of unreflecting love—then on the shore

Of the wide world I stand alone, and think

Till love and fame to nothingness do sink.