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.

Dear Me,

Ilene, may you find it in your heart to forgive me. It’s harder to forget than forgive for you, yet you may be better off, if you cannot forgive, to forget. Some wounds become scars. Do your best to forget the scars, some of which only you can see. They’re not from your cancer but the way your life changes because of your cancer.

The people you love will fall away, but they don’t know how to see you anymore. They feel guilty talking about their problems with you. Its guilt that stems from what they realize is pettiness. But you can’t hang onto those people no matter how hard you try. Letting go gives you a more solid foundation on which to heal. It’s hard enough with negativity and trying to explain your situation. Some will believe it’s based on something you did or did not do. Neither is true and there’s absolutely no point in wasting time.

Time is the commodity you have so little of, but don’t worry. You’ll have exactly as much as you need. Don’t waste it waiting for that is the one thing you’ll regret.

It’s not your fault -ironically – you’ll forget a lot in five years. For instance I’m so late in writing this letter to you because I’ve forgotten so many times. I meant to sit and write it 100 times but I forgot or time slipped away from me. And you’re the most important person in my life and you know me better than anyone, don’t you? Please forgive me for not writing this long ago. I’m still as distracted as ever maybe more so. Don’t worry the cancer’s not gotten to your brain yet. We are doing pretty well all things being equal given five hospital stays, five types of chemo and five different oncologists. You have a lot to look forward to.

But there’s a few things I want to tell you. It’s been about five years since the diagnosis came down on you like a boulder even Sisyphus hadn’t the strength to keep pushing up that hill. Do you recall Albert Camus’ version of the myth of Sisyphus? Ridiculously, because he has accepted his fate, he’s happy. His punishment is only horrible if hope of a better life enters his thinking. If he continues to focus on his absurd task then he cannot fear the punishment, extreme given its grounded in of his lack of trust in his widow left behind to carry out his wishes upon his death, but he’s dead. No longer in charge of what happens to anyone whos alive. Camus grinds his pencil point to a sharp by alluding to Oedipus and that, although both situations are absurdly tragic, both Sisyphus and Oedipus are ultimately happy. But how can a boy kill his father, marry his mother and live with all that guilt?

They both “conclude that all is well.” And all is well. You’ll use this to mediate countless times in the coming years but you’ll never leave hope out of your thoughts. I’m doing well so all can’t be that bad.

The moment you give up, the stone will roll back and crush you. Don’t give up hope because all is well. I never break promises to you. I promise this is true.

You’ll keep dreaming of bigger better things. Throw away your lists of things to do before you die. You can hardly count on making a phone call these days why then put a constant state of anxiety upon yourself for what you’re not getting don’t – when you’re achieving so much? I say this to you with all your expectations boiled it down to ONE SINGLE thing… the northern lights. Don’t forget that’s the one thing you’ve dreamed of your whole life. Find a way to go!

If you get to Scotland and Britain, awesome. You must try to hug those amazing people who have loved and supported you from afar.

However it would be great if your friends and one or two family members who physically can – would find a plane ticket to come out and see you??

There isn’t a lot left except loving more fully and learning to accept love better and know when to let go. There are a couple of places I’ve not been yet and maybe learn to fly or horseback ride. But I’ve not seen these as regrets but just life and living and finding the budget. I realized tonight in fact that if not another thing I wanted to do happened, if not one single trip to see and photograph the Aurora Borealis never came to be…my life would be a success.

This life is all you get and not having died as an infant, toddler, teen, or any other age is certainly an accomplishment as noted by our current global health crisis.
I loved with all my heart.
That’s the life you wanted.

I continue to live with love as the guide for my actions. You know by now all that’s mattered until this point is love and by shining your light you’ll attract amazing people to help support you through the most difficult time you’ll ever know. Leading the emotional rollercoaster is uncertainty, and coming in at a nose to nose tie is fear.
I was fortunate to meet people and travel and learn and become a success in my career and break a lot of glass so other women wouldn’t understand the shards that stay under your skin, I took the bullet. Many women around my age +/- 20 years did too.
In general I’m happy.
But most of all…there was and is LOVE. Einstein even was quoted as saying e=LOVE. A joke, but you get my sense of humor.

He and other scientists, ancient and later in the end said love mattered most.

“Tell your son to stop trying to fill your head with science – for to fill your heart with love is enough.” Richard Feynman

“One word
Frees us of all the weight and pain of life:
That word is love.” Sophocles

I suppose that’s about it for now. More later but remember one thing, I love you.

Love, You

My Sad Week and Report on The Global State of Affairs of #mBC #MetastaticBC

www.breastcancervision.com/sites/default/files/review-mbc/decade_report_full_report_final.pdf

This is well worth your time to skim or even fully immerse yourself in, and I’d say is still relevant as far as attitudes and education go. Especially of advocacy.

I’m feeling sad this week as I should have been in Philadelphia with the Living Beyond Breast Cancer 2020 conference getting trained up and becoming one of the honored selectees to represent and act on behalf of the people who need it most – the patients. And become another voice to deliver the messages where they’re most needed. I’m really down because we couldn’t get a real story from our government to stave off a crisis. We were lied to. Cheated. Made vulnerable.

And I’ve not wanted to ever hear – don’t mention you’re terminal illness if you wind up in the hospital with the virus. You may not get a test or even a ventilator because you’re dying anyway. What if someone more valuable or worthy arrives?

Here’s a poem for you and my tears track around it like the little girl just learning that life means death. I hardly need to explain this to anyone reading. I love you all.

Erasure

Sad, long shadow-colored faces stare out from my past,

As time sits in my lap like any child.

Her wheaten braids, long

Punctuated by red ribbon,

With hands worried raw

Her eyes like a glass doll’s,

Wise with false memory

From fables and lies.

Comforting her with

Neverlands and evermores

I name her Tomorrow —

Yesterday’s taken.

Somewhere a darkened classroom with every wall covered

In blackboards time waits for me.

Wispy white chalk ghosts pinned by a futile hand

Tonight’s erasers coughed up puffs of smoke

Clean them free of my numbers and your letters as

I add them together.

Can I call upon anyone to raise their hand

For the answer is sometimes so clear

But the corrections

The incorrections.

Out in the yard I saw the remaining clouds,

Silver shivering unlined,

Too light to stay and easily blown away

At once leaving only light

Filtered into my pin pupil eyes.

And I without warning and against advice –

I stare into the sun.

Overcome by warmth in my extremities

From over the hills a white flutter appears.

It’s not a bird, the cloudless sky does oblige

Without wind. What fell at my feet:

I lifted up a note to: me. Please return

To: Eternally. He asks for a promise:

Now, here, you and only you

May love capture, like a photograph only

Just enough for talking too much to laugh.

What’s eternity’s address

The letter remains in my pocket

And waits for me to join

The rest in time and peace of mind.