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.

Where’s Your Mind at Night: A dive into cancer and insomnia

Terminal illness effects the mind in some not so obvious ways. If you’ve got cancer of any kind certainly you’ve done deep, soul searching, looking for your own priorities and answers to life’s big philosophical questions. Yet even if you’re not terminally ill, there must’ve been times when you thought about some deep stuff, right? I mean thinking is usually what keeps us from sleep. But for those who suffer from many illnesses and not just cancer- take fibromyalgia for instance – the discomfort from pain and aches keeps you from getting comfortable enough to rest your mind and body.

Then there’s a very big mystery of why beyond these two major reasons we with stage 4 incurable can have insomnia. Nights not spent thinking about anything in particular and not physically uncomfortable, but just laying there unable to sleep for no apparent reason. I’ve not seen any science to study this form of insomnia. I have a guess that we really want to not miss any opportunities to live while we’re alive. Does sleep really keep us from those precious hours we could be doing things we can’t do when when are dead? It’s important and restorative for our bodies to heal and our minds to write memories on the big gray hard drive.

Sleep is for the dead, or so I’ve heard it said. And then there’s the little issue of wanting to experience life well rested and in a clear state of mind. Go figure – another paradox.

I’ve spent countless hours in deep meditation. On big questionas about mortality, about the importance of “things” VS. “people”, about letting go of unimportant emotional baggage, and forgiveness of myself, others, the universe and whatever my conception of a spiritual entity is like. I’m not going into that one. It’s been wise to not bring the r-bomb onto the blog (religion is best left with the p-bomb -politics which DO KEEP ME UP most nights because our beloved democracy is coming to a quick end as is my life – with a very screwed up, monstrous, interminable metastatic thing in a house it does not belong inside killing the very body that keeps it alive – it dies with its host).

However, just the simple fact of knowing my disease will kill me someday, that death is not some vague notion of inevitability, my thoughts turn more to dying and what plans I can and cannot make. I assume us stage 4 terminal endurers have these thoughts more often than people who have stage 0 through 3 “curable” cancers. But you tell me in the comments section below since I can only assume what I do not know.

Here’s a list of some things I think about throughout the course of a night:

  1. Should or shouldn’t I purchase the larger, economy size of soap, shampoo and conditioner? Will I survive long enough to use it all especially having really short hair now?

  2. I wonder if should subscribe to magazines or continue buying them off the shelf.

  3. Is it worth it to buy a new bicycle?

  4. Does my will still make sense?

  5. Should I visit the place I want to be naturally buried under a new born redwood tree in the Santa Cruz mountains or will it make me too upset? Shall I just instruct Craig to do what I want rather than choosing the space in advance?

  6. Do I want to reconsider becoming a marble instead? There’s a company that will take your body, burn it without polluting the environment and mix it with glass to create a beautiful paperweight or set of marbles from your remains. Pretty neat. You can be carried in your widower’s jeans’ pockets along with his keys.

  7. If I’m a marble and Craig dies what would happen to marble me? Will I just wind up in some antique shop along with a bunch of other marbles?

  8. Pink Floyd or Led Zeppelin?

  9. Watching a movie or rereading a book seems heretical.

  10. Put the ice cream down or finish this here pint… Oops. Don’t ask for any it’s done.

  11. Did I choose the right adoptive parent and back up parent for my cat-son Simon?

  12. Can I haunt people after I am dead and if I can who should I haunt?

  13. Conversely I’d really want to visit people I love. There’s some serious practical jokes I’d love to play on my OCD husband.

  14. And I’d love to torture his ex wife who spent years trying to break us up and also tells my stepsons I don’t really have cancer I just want to sponge off their dad and I am a gold digger. I wish. I have some lessons she needs to learn in my opinion. And who better than someone she haunted while I was alive!

  15. I’d love to see a few more places and have some experiences yet to do. The northern lights is one. Going back to Paris and France generally and traveling all of the UK. Meeting the people I’ve only been able to interact with on my blog or social media in person to secure my friendships and make them whole. The UK trip will help a lot with that one. There’s a lot more but these stand out.

  16. Can I rent an RV and drive around the US and see my old friends one more time before I die. I don’t have the money and I don’t know if I’ll have the time. I wish they’d be able to come see me. But if I’m not worth their time and money…well should I make an effort? I’ve spent a lot of time filling and u packing a lot of emotional baggage on this one in particular.

  17. Should I get a walk in bathtub? Will that make me an official senior citizen?

  18. Do I continue to keep trying some new somewhat tangential hobbies to my current hobbies? Will I have the time to be good at anything else other than what I’m already good at? Like gardening and growing food for us – there’s a lot to learn and who’d tend fo it when I am dead?

Whats on your list of things that keep you up at night? Can you relate to my list and my thoughts with regards to why we don’t sleep beyond the two big ones – mental and physical pain?

I’m pretty upset with a few people, several companies especially AT&T, and excited about a few activities and people who will visit in the next few months. And nervous about my upcoming radiation treatments on my vertebrae.

That’s just today’s mind antics so on that notes I’m going to go ground myself on the soil outside then go take a nice long bath. Fuck all the chores today. And fuck you cancer.