My Gratitude: our virtual support group abc 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:

“[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

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.

Days of Futures Past

Would what I know today have helped me in the past? Circumstances change with every decision and what and who play roles in our lives constantly shift like sand on a beach. The ocean’s tides ever flow, but never continually the same so the charts must change with them and the shifting of the depths we cannot see beneath us. So anxious minds consider, “if only I’d known then what I know now,” beating themselves up with the knowledge they never could have known before that very moment. Experience and wisdom helps our insight, but focusing on the moment helps us get to the shore, while not looking back at the vastness and the waves behind us can make us run ashore instead of landing in the safety of the port of call ahead.

People change, as their roles in our lives do – and they perhaps hadn’t even shown up yet as we sail into this moment. Knowledge of the past certainly builds a foundation failures and corrections, of perfecting a skill or building a long term relationship. Adding all those trials and errors leads to our successes. But somehow we get older. Hopefully wiser and things become easier. Right?

There’s knowledge that’s unfashionable to a younger, unexperienced mind. Yet how I sometimes wish I retained less of the knowledge I’ve amassed. The German Erfahrung, translates to the English word experience yet the German definition connotes more closely to my point. Erfahrung equates to the coherency of one’s life’s experiences. And that’s the subtly of why what we know now never could help our past selves.

Our egos sometimes overshadow our vision making it difficult to see that we, as the coherence of the past, culminate into the current moment. Can you know more than you know? But how do you infer a decision from the past without the culmination of experience?

I try to follow the old rule “fool me once shame on you. Fool me twice shame on me.” But there’s not a one of us who can honestly say we’ve not gone back for more foolishness given instances of grief, love, passion, obsession, and even hope. It’s the science. We rely on evidence based knowledge to go back for more chemotherapy. Yet as far as I know there are no instances of chemotherapy curing cancer, though we’ve experienced successes using western medicine.

It’s not foolishness but hope that drives us to swallow the pills, sit through long infusion sessions of poison, and lasered with radioactive beams of light. How can we hope to recover with the help of the very things that contribute to cancer? We certainly know more today than we knew yesterday, but back for more we go.

All we are is all we are.

We’re all we are, but not all we have been. Change is never a straight m path. It’s not a tightrope with a net beneath to catch our fall when we make mistakes and lose our balance. The paths we walk, crooked and curved, and look more like mazes than labyrinths, since we have an end to the process in mind not just a question we ask as we walk around the crooked and curved lines, none contain us or forced us go make a decision in order to exit.

We skip over cobblestones in the roads. We change course. Our bodies don’t even remain the same as our physical selves aren’t even the same as they were a millisecond ago. And that’s physical age taking us over. Everyone is born terminal. If the doctor slapped a newborn’s bottom to make sure they’re able to scream and thus breath, the first words we should have heard were, “I’m sorry but you have a terminal case of stage four life and you’re going to die from it”. We don’t have a prognosis on your actual mortality but have hope. Medicine has come a long way and life expectancy has reached 77 years in the US and over 80 in European and Asian countries. If your children were born recently they’ll be expected to live over 83 years. When I was born in 1965, the average age of mortality was 74.

It’s unlikely I’ll reach 74. Metastatic cancer shaves years off of the long life my parents expected me to have – both of them thought I’d live into my 90s for some reason. I’m a mortal disappointment.

Roll the dice and be nice.

Take good care of your soul and your spirit. Whether or not it’s true that heaven and God exist, kindness and giving others love won’t make life here and now any worse. Actually, I can only make living here better. What really do you have to lose by navigating this life with a well tuned moral compass to help guide the way?

One thing I have learned is that saying I’m sorry even if I don’t feel that I am at fault and the argument isnt “my fault” I apologize. Yet it has to be a real apology not one that feels false or feels forced. Sometimes you have just say I’m sorry. Because tomorrow morning it’s not who said they were sorry, but that the burden of stress is over. Chances are you won’t even remember what the argument was about. Because let’s face it it wasn’t about what you said, it was about what you didn’t say. But you’ll be happy for for the hug that you’ll feel for the kiss on the cheek for the I love you that you’ll hear. That is an easy thing to do. It’s the ego that gets in the way and if you’re taking care of your spirit and your soul the ego takes a backseat.

It’s the ego that gets in the way of the possibilities of genuine apology. Yet if you’re taking care of your spirit and your soul the ego can take a backseat. We can let the ego grow, like ivy growing over the bricks of a university building. It might look good, yet it covers what’s hiding underneath.

Your soul and your spirit are the most valuable and precious things you’re responsible for. And if indeed there is “heaven” and “God,” and you don’t believe in a specific doctrine or prayer book or religion, still what do you have to lose by doing good? Taking spiritual care of yourself is as important as taking physical and mental care of yourself. It helps you treat other people the way you like to be treated.

I do believe in the old aphorism of treating others how you’d like to be treated. How many of us really practice that? Look at the arguments that you have look at the things that you don’t say that you really want to say and then tell me that you do treat other people the way that you want to be treated. Don’t you want to really know what somebody feels have somebody wants to be treated? Perhaps it’s not what’s being said, but that feeling in your gut that you should listen to instead.

Laying down your sword and holding out your arms instead to hold someone makes life easier. And I do believe that life is meant to be easy. It’s certainly easier taking care of yourself and allowing that self-care to show and shine for other people in the form of a genuine heart. The better you take care you take care of yourself, the better you can take care of other people. Practicing that can give you a happier life right here and right now. Practicing self-care and self-love helps the way I care for others to improve.

Where in lies the difficulty?

We struggle when we want more than simply life itself. We cannot control others. If indeed life weren’t meant to be easy then life itself would make no sense at all. It is simple and it is easy. In summary I want to give you for things that I’ve been thinking about that had me write this post which seems probably very philosophical to you. I haven’t written a post for a few weeks because I’ve been thinking quite a bit in this downtime, in this alone time, and tried to treat this isolation is not so much lonely but is the time to do some self discovery. I hope that you’ll get a little bit from the soul-searching that I’ve been doing.

1. Accepting that you’re born to eventually die and not worrying so much about the end but simply living in this very moment is the best life there can be.

2. If you take care of your spirit and your soul your back is covered. Whether you believe or not in god or a doctrine to understand the meaning of life, regardless, there was once a beginning of all things and there will be an ending of all things but everything comes from “one.” You don’t have to worry if you’re a good person and don’t damage yourself or harm others or the planet or anything beyond.

3. All we are is all we are – but not who we are. Some say we are only the summation of our experiences. But those circumstances of our experiences don’t simply make us exactly what we are and we can change. There are second chances and we can change. Some say people can never change but I say that’s absolutely false. I’ve seen people who have argued about the same things so many times but when they finally got down to what was really bothering them they were able to go forward and move forward and take care of their spirits and souls.

4. I have all I need right here and right now. If I want more than life itself then I’ll always feel life is a struggle. Leave behind the wants and the must-have’s and the lists of things. Buying doesn’t make you more human, but sharing does. Loving does. And being loved in return makes life an easy place to be. Life is terminal but let’s say this:

Life is easy let’s let it be and so it will be.

Connections: The impact of terminal illness on relationships

Who wants to die without seeing everyone you’d want to see and saying all the things you want to say to the most precious gifts life has to offer: of friends you make along the “long and winding road,” to quote Lennon and McCartney. I’d venture to guess very few people, if anyone, would pass up such an auspicious opportunity. Or would they?

Receiving a terminal illness diagnosis, like metastatic cancer, can cut the human heart out like a serial killer with a hunting knife. Stunned we watch in horror as in his hand your life quickly fades to black as he shows your heart to you, blood through his fingers right before the light in your eyes burns out, extinguished forever.

Why do I imagine such a vividly gruesome metaphor for what should be a series of happy reunions?

A day in a life

Ahhhh. My bath time. The time of each day when I reflect on my self care and I give myself a physical and mental check up. Some time to meditate, listen to an audio book or music or both. Or do a Zentangle focused drawing tile. If you’re not a visual artist like me but want to learn to draw, try the Zentangle methodology. It’s great for concentration and for relaxation and it truly improved my confidence in my ability to create hand drawn artwork. I’m even proud of a few of my pieces!

Stumbling into my peaceful bath ritual came The C. Innocent as the slightly autistic driven snow, he offered,”If you need to travel to say goodbye to some old friends don’t worry, I will take care of your travel costs,” offered C last night as I sat in a hot bath. I sat with tears falling into a bathtub of steaming water. Such a thoughtful gift brought about a tearful response. He tore at my heart while giving with his own. He left me alone shutting the door, quietly walking away, feeling upset and confused.

Why did I cry instead of showing my gratitude? His generosity shattered me into a hundred little shards of painful fragments. Pieces of sharp broken promises of a future. Another day in my life, post-terminal illness diagnosis. I’d heretofore avoided the subject of visiting old friends. There are people I frequently daydream of seeing again, who pop into my minds eye along witht the feeling that I might not see them befor I die.

Relative mortality survival time with statistics - but I try not to follow numbers since they mean nothing to anyone’s individual cancer.

*See stage 4, that’s my survival chance beyond five years but I could never play by the rules so these numbers are mere poo flung out to scare me from Dr. Mary’s monkey cage. It’s been four years and two months since my diagnosis and likely much longer since I’ve had my chance to begin with before it went raising my body like a pirate.

On our way home

I hesitated due to the ravages of chemotgerapy to visit with an old friend who came from Paris with his 22 year old son to the Bay Area. He and I last saw one another 12 years ago when he dropped me at the train station in a small town down in the southern mountain region of France. We were not too happy with eachother at the time. But maturity and sense took over in the span between then and now. Meeting him for an hour before he had to check in I was not nervous but excited to see him.

Funny how cancer gave me a strange confidence in knowing it didn’t matter how good I looked. It didn’t matter what I wore, because neither of us will remember our relative fashion sensibilities as the highlight of our brief yet meaningful encounter. We will recall how it felt to hug one another and to feel the connection of a true friend and the kind kind of love that’s without beginning or end.

Moved to feel the connections we make along the way with those who travel along life’s path with us, authentic and deeply touched and indelibly changed by that very beautiful place only we know while joined with another spirit. Through the years we expand on our experiences together and fold them in on our consciousness. Our expression then takes on a higher power, two squared if you will. We better ourselves because of an instinct to find other souls in a sea of possibility. This I believe is where our instincts must take over.

I trust my instincts more than ever because sometimes that in and of itself is what was changed by another person. The innstinct infuses us with life and light and love. For what is love but the purest form of human instinct.

Ticket to Ride

Try as I could I couldn’t but cry for being happy to have seen him… knowing it may be the last time. But perhaps not so until we meet again…I am here and as long as I am alive there is hope. With hope comes possibility. And I have hope there will come a day when we can hug again.

Yet we can only live in this moment. It’s all anyone can do. And I ripped the bandaid off of my fear of the next time I see an old friend, perhaps being the last time we may see eachother. Maybe C’s right and it’s time to get traveling and live again to see those people who have meant so much to me over the years, and to the person I’ve become. Because whether or not they know it, I would never have the strength of spirit to dig up the tenacity required to go the distance with metastatic cancer.

Never underestimate how you’re loved. It’s more than you think and never too late to find out.