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.

Cancer Art Journaling: Colorful words help heal my mind

Reluctantly, Ive decided to share a couple of pages from my sketchbook where I keep my not so very good artwork. I scrawl my emotions out on the pages using colorful pens, pencils, markers, paints, and whatever else handy from my growing art box.

Some days, instead of trying to get my words to fit in an essay, I find it easier to explore more non-traditional forms of journaling. One of my favorite sketches to date was to create a woman’s torso out of the letter “w” beginning the word “why.” It’s a question we probably all ask ourselves occasionally. Not feeling sorry for myself as in “why me?” But more in terms of “why not?” Why aren’t we counted? Why do we still need to die from metastatic cancer?” Why, indeed. Even if you aren’t a great artist like me, just let your colors and your hands do the talking for you. You may find out some things you didn’t even know you were thinking about. It’s visceral and gut level and it’s also a great way to purge negative emotions in a positive way and you just may have some fun.

Go ahead, be a kid and doodle. I’ve taken up trying my hand at mandalas, too. They’re not very good yet, but practicing focuses my mind away from everything and into the art form and coloring in the interesting patterns that emerge. And share them with me here if you decide to create something. I’d love to see what others are using their art journals to express. New ideas to generate ways of thinking about my life and my cancer are such a welcome gift.

Periocentesis No. 9

Instant Karma’s gonna get you /Gonna knock you off your feet / Better recognize your brothers/ Everyone you meet/ Why in the world are we here/ Surely not to live in pain and fear/ Why on earth are you there?
John Lennon – Instant Karma Lyrics | MetroLyrics

Where you going, Turkey?

I run out of the house about 5:00 pm while the dear husband sleeps at home with dreams of sugarplums or whatever the depressed dream of, dancing in his head. He’s “napping” in his office due to another night of wall patching, crown molding cutting, and painting. Home improvements for dressing up our overpriced  Silicon Valley townhouse, in a very good school district should you find yourself interested in an affordable yet pragmatic home with lots of great upgrades in move in condition. My realtor days never stood a chance and never began. But enough of my yakkin, let’s get on with this mockumentary.

I try to wake him gently, without frightening him, and to my  dissatisfaction, my 10 minute car ride seems an imposition on his sleep and he groans at the potentially long night ahead. Earnestly my response, “please stay here and sleep then. Happy turkey,” possesses him into a fit of angers and he chased me yelling some foul things at me which I’d rather forget and I slam the door to the house after putting two hastily packed bags in the front seat of my Mini, a car I despise but live with.  Disappointed and downcast instead of insisting he take me and feeling his ire rise like a red sun up his neck, I go back inside, kiss his forehead and tell him to just go back to sleep and I’ll call when I know more about the timetable ahead.

So, rather than the table set with a feast of the usual, but beloved conqueror’s meal, I land feet first in Good Samaritan hospital, feeling the swish and settle and the pain of the fluid like a broken snow globe in my belly. Alone on Thanksgiving Night. Neither my mother or father remain in the conscious dimension, and I miss them. So in memorial to my parents, before I go to the place where time stands still, I stop at the open Walgreens en route to the hospital and purchase a cat ear headband which I wear until the next day. Amused by the ears, nurses and occasionally doctors ask why I’m wearing them. Do they make you smile? My response takes them aback and they always respond with the affirmative.

Miss kitty goes to hospital.

In a morning from a Bogart movie/ in a country where they turn back time/ she goes strolling through the crowd/ like Peter Lorre contemplating a crime./ She comes out of the sun in a silk dress running like a watercolor in the rain./ Don’t bother asking for explanations/ she’ll just tell you that she came / in the year of the cat.

Year of the Cat,  Lyrics by Al Stuart, produced by Alan Parsons

Lyrics of genius provide hours of headlong stares through my haze into music coming through my iPad and into my head. Why at 4:00 am, no one can really know, does old music haunt dreams undone. My card catalog file or for you under 30 sect, my internal search engine, cannot let lyrics of any song go, and one, maybe three plays is all it takes and it’s written to memory, like seeing the Grand Canyon might burn into a normal person’s memory. Thus I’m as haunted as I descend into this next surreal event at Good Samaritan.

CAT Scan Fever

Failing to tell them my father would find the cat ears absolutely apropos of the moment and laugh until he teared up, which he did most of his life over things many would find a bit lackluster in humor. But I loved him for our ongoing pun-offs that lasted years. Whichever one of us could elicit the loudest groan from the other of “that was soooo bad” would be the clear champion. By the time he died we had tied, but I think neither of us got the last laugh. Yet my mother, not humorless but more conservative in her snorts of laughter, would simply have roll her eyes and puffed out her dismissal, “my daughter, such the comedian.” Use Bronx bred New York Jewish accent with this statement and thus describe her to a tee.

How different would anything really be if they were still alive? I see families in the ER that night. Sons and daughters. Fathers, mothers, grandmothers mostly, few if any grandfathers. Making up their life stories in my head I also become indignant for their lack of decency in coughing all over or not wearing a mask although it’s clear they’re waiting not for a doctor but for a patient. I see monks in orange with what seemed like burkas over their heads and humbled I thank them silently and grateful for their presence. They seemed to provide control in a swirl of germ laden chaos. I secretly wish to go home with them and do a two week silent retreat.

Stick people waiting for more sick people.

California Dreaming

Typically in the United States, where healthcare costs a fortune, an ER acts as a pseudo budget urgent care clinic for those with maladies such as broken bones and symptoms of infections of every  kind: influenzas; stomach viruses; and some with  pneumonia. Even I’m averse to wearing a face mask but in required spaces of malfeasance wear I must. Can’t stand the discomfort they cause, can’t breathe, and they make my ears hurt. I pull the mask down to punctuate the veritas of my situation to the check in guard. I lean in and quietly swishing my tight abdomen full of cancerous ascites, that I need to get inside to a single waiting area due to my MBC, but I can stay in queue for the doctors to see me. He looks bored with me and my woeful tale. He looks at me like I belong there on a 5150 instead.

Guy with a flu not wearing his mask.

I explain my immune response problems, and beg him please yield to the truth I run down to him. “If you have speaks with the nurses they would back my story up and you’ll not get in trouble.”  He ponderously breathes out through his chicken yellow face mask, pushes his girth up using his arms as levers against his makeshift official desk: a plastic card table waiting for replacement during the hospital’s second year of “pardon our dust.” He is going to test my story against hospital rules.

Shifts in Time

Smiling under my mask, I go sit down far from people as possible and within all of five minutes the nurses call my name. All the other waiters in the waiting room give me very ugly and uncomfortable looks as if to say, “I’ll kick your ass, white girl! Who do you think you are in your cat ears getting ahead of the line here?” Princess Kitty feebly attempts an explanation of the criical nature of her cancer, only to find curses hurled at her in Espanol and Mandarin Chinese.  I bow, I think, and then let the nurses working the Thanksgiving shift take my vitals and gently escort me to a room where I wait for five hours with a very sick companion about a yard  away from  me behind two curtains.

Hospital bed

 And so begins another hospital stay of several days. Not unpleasantly spent waiting for the doctors and specialists to return from a long holiday weekend to the hallowed, echoey corridors of shiny terrazzo stone polished gurney byways. It’s quiet for a change and the nurses seem less bitter as they wear holiday scrubs and small holiday trees begin growing in each wing and ward. Tipping over midnight the resident after a strange outsourcing experience in medical management takes over my case when it’s revealed I’m on social security disability.

Wow. An experience to behold after years of my life spent advising companies large and small on which parts to keep in house and which parts aren’t in the core competencies of the organization to outsource. Last I looted hospitals were in the business of medicine and billing for rendered services. Not a good sign, and this time the certainty of my conviction was more than just a very experienced hunch. So, hold onto your hats for part two of this post in which an unnamed company retains H1B visa doctors steer my wallet towards a billing company for high risk payees who may slow pay or underpay, or gulp, die and never pay patients.

By Saturday morning the removal of another 6.5 liters of fluid drain from me like a waterbed by one of three periocentesis experts, whom I’d met just a year prior right on the same date who came in to poke a hole in my right lower abdomen and guided by an ultrasound and his body of knowledge he said, I swear, “let’s drain you dry.” And drain I did to 15 lbs of relief.

Does a sound of relief slice through my body as I get the first good nights sleep in a week! Goodnight friends. My odyssey continued and still continues. I’ll remind myself on a short post of a timeline that I’m still living out until May 27th.

Taxol take me away to that place when NEAD indeed replaces tumor and chemo in my chart. And immunotherapy trials come to meet us on the high road to wellness.