sparkledame

Sparkle Brain

I never, ever remember that I had a brain aneurysm coiled a few yrs ago, but I just found this…

I can now officially say that I have a sparkly brain! On Wednesday I had my brain aneurysm “coiled” with platinum – so swanky! The surgery went smoothly, for which I’m very grateful. But My God Almighty, I have never experienced headaches like that. I spent the night riding waves of intense nausea mixed with the most brutal pain.

As with all my medical experiences, it had an absurd, comical side to it: the patient next to me had a visitor, (dressed head-to-toe in bedazzled splendour), who was blasting Celine Dion while performing a weird interpretive dance (in an ICU-type recovery room). And no, I’m not exaggerating.

The doctors wrote me a prescription for Percocet to help with the headaches and I was paranoid that I would become addicted. That I would end up like Nurse Jackie, doing anything to secure my next high. Once home though the drugs were a godsend and I spent most of the day dreaming of Iron Maiden – who were dressed like Wizards – flying through the sky!

(Author’s Note: A special thanks goes out to my cancer! Had I not been in the hospital being treated for Mesothelioma – where I ended up with “Neuroleptic Malignant Syndrome” after a bad reaction to a drug – I never would have had my brain scanned and my aneurysm would have gone untreated. So thank you Mesothelioma!)

Spaghetti Can Flowers

This summer I received wild flowers in a tin spaghetti can. The flowers arrived with a package of butcher’s bacon. Yes, that’s right, I received flowers and bacon together.

At my B & B in small-town Quebec there was a knock on my door. I checked that I was presentable, threw on my Covid mask and opened it.

A thin, sun-hardened arm reached out and passed me the flowers. They were lovely and had clearly been arranged with care, not simply tossed in the can.

“These are beautiful, what a sweet gesture, thank you so much, I…”

The same thin, sun-hardened arm reached out again and passed me a package wrapped in brown paper.

“It’s for your breakfast with your friend. You’re going to visit her today, right? It’s bacon.”

Wearing a black goth-y mumu, hair in a giant bun, floral mask on, I stood holding the flowers and bacon. I felt like an actress in a scene from a quirky indie film. The gift-giver was my ex-boyfriend from 30 years ago, we had dated briefly when we were just twenty years old.

I had come to Quebec specifically for a late summer, covid-safe outdoor visit with one of my oldest & most beautifully eccentric girlfriends. When I realized my old-boyfriend lived nearby I thought it would be fun to have a coffee or a glass of wine with him and catch up. I was not prepared for flowers and bacon, nor for what I had experienced the night before.

The previous evening I had spent sitting in a field with my ex and two other men, one a close family friend of his and one a straw hat-wearing man whom he appeared to loathe. A somewhat alarming-looking fire roared nearby in a metal barrel and a giant pirate’s flag decorated the outdoor workspace behind us. Music blasted from somewhere as we drank wine from jam jars that had seen better days. At various points in the evening the guys took turns peeing outside.

“If u need to go pee, you can just do it out here, don’t worry, we won’t look and you’ll be safe. I’ll protect you,” said my ex.

On the walk over to his artist-meets Hells’ Angels living quarters, I discovered that the man I once knew was buried under layers of pain. He had a hard time making eye contact, he fidgeted and he was drunk. Though he smelled like beer, he smelled more like suffering; layers of suffering. Like a trauma layer cake with his old self as the bottom layer. Followed by a layer of deep grief and loss, then a layer of un-treated depression and self-destructive behaviour, iced with a thick layer of sadness. I knew he had been in the Service, so added to the layers were sprinkles of PTSD.

I felt his spirit had been so badly broken, that he had given up and now resided at the bottom of the trauma cake, unable to cast off the layers.

Later that night, alone at my B & B, I was overcome with sorrow. Deep sorrow, sorrow so intense that it alarmed me. I wanted to help him. I wanted to witness him with his spirit intact again. I wanted to smash that trauma cake.

So no, I was not prepared to receive flowers and bacon the next morning. But I will never forget them. The moment was tender and real and awkward and despite the sadness I had felt the night before and still felt, it was also beautiful.

#trauma #oldboyfriends #lifestories #quebec

Finding Urethra

“Let’s have you pee in a bed pan today!” My nurse exclaimed with an air of excitement, like we were about to go see our favorite band.

I had been in the hospital for almost four weeks, (to treat Peritoneal Mesothelioma, a rare cancer), peeing through a catheter the entire time. I was game to try going on my own, but I was weak and wasn’t sure I would have the strength to pull myself up on the bed. My nurse took out my catheter then helped me into an awkward position, crouched above a cardboard pan.

The pan looked like a larger version of those biodegradable herb pots, with my vulva like an alien spacecraft hovering above the brown pebbled earth.

“I’ll give you some privacy,” said my nurse, leaving the room.

I looked out the window at the falling snow. No urine was exiting my body. “I command you to pee!” I said in a theatrical voice to an empty room. Nada. Not a drop. I was sweating and wanted to lie down, the position required too much strength to hold.

The succulent-crystal gurus say, “Ask The Universe – with love and gratitude – for what you need. Then visualize having what you need – and poof! – you will manifest it.” So I asked the universe to help me pee, in what I hoped was a loving and grateful manner. Then I visualized a long river-like flow of urine exiting my body – swoosh! I paused, ears tilted, in full manifestation mode. Nothing. Maybe the universe was busy helping people with more serious problems, like those living in war torn countries. I couldn’t blame the universe, I’d do the same thing if I had magical powers & everyone was hounding me for help.

I was sure I was due for another blast of Hydromorphone. After two surgeries and HIPEC, (hot chemo poured in the abdomen and swished around), I was ablaze with pain. I buzzed the nurse’s station:

“Hi. I can’t pee. Nothing is coming out. Also, I think I’m due for more painkillers.” My nurse responded, “be patient, keep trying, it’ll come. And no, you’re not due for more pain meds yet.”

I stared gloomily at my crotch. “I know you’re in there, come out come out wherever you are!” Still nothing. I tried reaching for my water cup and fell into the pan.

My nurse appeared, “don’t worry sweetie, your bladder is just waking up from a long sleep, we’ll try again tomorrow.”

She helped me lie down and inserted a new catheter and we chatted about her weekend plans. I loved my nurse, I loved all of my nurses – they were like athletic shoe-wearing angels tending to me with care and quiet confidence.

“I’ll see about your pain meds” she said, as she handed me a damp towel for my sweating brow.

After five weeks in the hospital – and no peeing on my own – I was transferred to a Rehab Hospital to work on regaining strength, gaining weight and learning to walk again. My left femoral nerve had conked out during surgery, (from being splayed out for so long on the operating table) and I had awoken to find that I couldn’t move my leg.

The nurses at the rehab hospital were hardcore, they were like the Marine Corp of Nurses. They immediately took out my catheter and started “bladder training.” They seemed confident that I would be peeing in no time.

I was instructed to try peeing on my own every two hours. I would slowly make my way over to the bathroom using my walker, trying my best to avoid looking at my emaciated body in the mirror. Sitting on the toilet with the sink water running, I would wait five minutes, then get up and do my haunted girl shuffle back to bed.

Bladder training required waiting six hours before being allowed to have a catheter inserted to void the urine. In between physiotherapy, sleeping and doing my laps around the floor, my bladder would fill up to the brim; it was horrible. At this point I was no longer on pain meds, but I would often sneak a Xanax from my private stash just so that I didn’t completely lose it.

The nurses were required to scan my bladder to see how much urine I was retaining before they were allowed to insert a catheter to drain me. A catheter, in this case a long rubbery one which looked like a hose, was lubed up then inserted into my urethra. The urine would then drain out into the brown organic pan – it was called doing an “in and out.”

Then came the day when one of my favorite nurses dropped a bomb: “you’ll be going home very soon and your bladder nerves are still not working. So today I’m going to start teaching you how to do your own in and outs.” Dear God, have mercy on me please.

Thus began a brief chapter in my life called “Finding Urethra.” Because if you want to drain your urine, you first need to find the hole that it comes out of. And by hole, I mean a really tiny, almost imperceptible slit that is kind of hidden by the rest of the female bits. Maybe I’m in the minority or I missed a crucial health class back in high school, but I honestly didn’t really understand where the urethra was. So I used a mirror to watch the nurse and at night, under my blankets, I examined myself by the light of my cellphone.

I had an irrational fear of doing the procedure on my own. It’s like all my anxiety about having cancer was projected onto this one procedure and I couldn’t imagine that I would ever master the skill. I envisioned myself at home, swollen like a balloon with unreleased urine, until one day I just exploded, spraying pee everywhere.

But like anything in life, when your back is against the wall and you have no other options, you figure things out. One day, having finally located my elusive urethra, I successfully performed my own in and out! I basked in the glory of the moment, telling everyone on my floor my good news. I celebrated by eating an extra cup of ice cream (side note: the little hospital ice cream cups are, unlike all other hospital food, strangely delicious).

A few days later I was discharged from the hospital with a supply of tiny, clear catheters, lube, a giant splint on my leg, a walker, crutches and a cane. It would be six more months until my bladder woke up. Then, one day, while sitting on the toilet, I suddenly heard a beautiful noise – the swoosh of urine! The universe had finally granted me my wish.

Author’s Note:
My bladder nerves only partially woke up; I still have to self-catheterize twice a day. This is what the little catheters, aka, pee sticks, look like:

Rituals

With the Covid nightmare, trick-or-treating is not really happening – at least it’s not supposed to be here in Toronto. Yet this year I found the rituals of Halloween soothing, but in an odd way. Soothing in the way that putting calamine lotion on a mosquito bite calms the itch for 2 min but then you need to put more lotion on. Like a slightly obsessive compulsive soothing.

I probably went to the Dollar Store 15 times, each time buying a couple of skulls, or ghosts made out of hideous flammable materials. I would stare at the walls of merchandise, (while wearing my mask of course) and think, “I just need to find the perfect witch…” Insert “and everything will be alright.” A vaccine will be found for Covid. Biden/Harris will win the election. I will get to visit my brother in NYC and my Oncologist will find solutions to treat the weird symptoms I’ve been experiencing lately.

I would return home and add the decorations to our postage-sized front lawn. Then I would stare at it, as if I were a fancy landscape artist trying to decide where to plant an expensive shrub. And each time I would think “it just needs one more hanging ghoul, or sparkly pumpkin and everything will be perfect.” Of course perfection never came and finally I had to cut myself off from what was becoming an unhealthy compulsion.

It’s now Halloween evening. I have two giant bowls of chocolate bars and chips and I’m wearing a sparkly unicorn headband. So far we’ve had one early trick-or-treater whom we had planned on seeing: our neighbour’s one and a half year old child, dressed like a terrified fox. He picked a matching fox-orange bag of cheetos from the bowl, a socially-distanced bowl. And for a minute everything felt normal. Our face masks not withstanding, it felt like just another Halloween. A joyful night filled with candy and costumes and faux scariness. The real scariness temporarily swept away by the Dollar Store witch’s broomstick. It was a lovely moment.

~~Continue reading “Rituals”~~

Teatime

Today I’m trying CBD tea for the first time. I’m hoping it will help my anxiety, which recently has taken possession of my stomach, making it difficult to eat (though I wouldn’t say “no” to a cookie right now). Now that I think of it, I think this little packet of CBD tea, (which I ordered from the Ontario Government), should come packaged with two shortbread cookies. Perhaps the cookies could be in the shape of pills – how fun would that be?!

Like most, (or perhaps all), CBD products, this tea has a tiny amount of THC, 1%. Now to most people I know, 1% of THC would be laughable, it wouldn’t even count. But I’m one of the those THC-sensitive types, it tends to make me paranoid instead of mellow. So let’s see how this experiment goes…I don’t want to end up in the ER again like the time I took too many bites of a pot cookie. 😬

photo from the website envisioningtheamericandream.com

#cbd #edibles #anxiety

Skinny Jeans

It was my first time trying on skinny jeans and I was excited. My legs are stocky, inherited from my mom’s side of the family who were all strong Irish farmers. As a teenager I had yearned for my dad’s long, pole-style legs and had even asked my parents if I could get my legs stretched (I had read somewhere that a lengthening machine existed).

At forty-six years old I had long ago accepted by body, but when I slipped into a pair of size 24 skinny jeans and saw my legs looking strangely slim, suddenly my insecure teenage self reappeared and she was ecstatic. Yet the reason they looked slender was because I had lost weight due to cancer. I was newly diagnosed with Peritoneal Mesothelioma, a rare, incurable form of abdominal cancer and I was in denial. “I’ll take them,” I told the shopgirl. And though I’m ashamed to admit it, for the next few weeks I actually liked how I looked. How sick is that? Speaking of sick, during this same period I did not feel well: I had difficulty eating, major nausea and twice daily panic attacks where I felt like my throat was closing.

My cancer “de-bulking” surgery was eight hours long and included the removal of my reproductive organs, a section of my small intestine and my primary tumour which I had named Maude. It also included a treatment called HIPEC, which is essentially hot chemotherapy poured directly into the abdomen while the patient is still on the operating table, aka a chemo bath.

After several days in the ICU, I was moved to the step-down unit. It was there, ablaze with pain and high on narcotics, that I made a decision: I had suffered enough. I would run away from the hospital and fly to Oregon where I had read they had passed legislation that allowed patients to “die with dignity.” But such an escape would be impossible without my skinny jeans.

“I need my clothes,” I whispered in a raspy voice to my partner. Not wanting to upset me, but suspicious of my intentions, he retrieved my hospital bag and put it next to me on the bed. I pawed at it in a drugged-out frenzy, then passed out.

I awoke to a large tiger staring at me from across the room. And someone had brought their dog to work: “I can’t believe they let animals in the hospital!” I said to myself, horrified. My great escape would have to wait, the hospital needed me; I had to keep watch over the creatures infiltrating the building.

Also, I had a new friend whom I had become very attached to and I didn’t want to leave her. A nurse’s assistant had been placed in my room to guard me, since in my delusional state I had made several attempts to get out of bed (while attached to multiple tubes and monitors). Not understanding that she was there to keep an eye on my crazy self, I thought I had my own private nurse-friend and I adored her.

Due to a myriad of complications, I spent two months in two different hospitals. At the second one, a rehab hospital, the nurse weighed me: the scale read 94 pounds, I usually weigh 120. I had lost a great deal of muscle mass; my legs were emaciated, atrophied sticks and my bum was pancake-flat. I avoided looking at myself in the mirror, it was too upsetting. I begged God to help me gain back the weight, promising never to complain about my thick legs again.

In retrospect I think my early fixation on my legs was simply my way of avoiding the intense emotions that were surfacing. I was scared of dying, who wouldn’t be? But what really troubled me was the idea of hurting those I loved. I was blessed with a partner, family, friends and a one-eyed elderly street dog who all loved me. I didn’t want to cause them pain.

Now, two and a half years later, I am back up to 120 pounds and I’m as stocky as ever. I am extremely lucky to be alive, many people with Mesothelioma don’t live more than a year after diagnosis. And though I’m grateful, I’m also aware that I’m living on borrowed time. So now I wear skinny jeans as often as possible. It’s my way of giving cancer the middle finger.

Intimacy After Cancer Treatment

I wrote an essay about navigating romantic love after cancer treatment and it was published in The Globe & Mail Newspaper (Canadian Newspaper). Here is the link:

https://beta.theglobeandmail.com/life/facts-and-arguments/navigating-intimacy-after-trauma-is-something-no-one-can-prepare-youfor/article36237918/?ref=https://www.theglobeandmail.com&

The Crazy Room

This morning as I was tidying up, I briefly entered our laundry room/office which is our “crazy room.” I think most of us have one of these, or the equivalent – a crazy closet, drawer or cupboard. It’s the place where everything you don’t want to deal with goes to die. And I found myself thinking that the crazy room is very similar to that space in our psyche where we dump all of our emotional crap that we can’t deal with at the moment.

I keep telling my partner, “we need to deal with that room, it’s out of control.” And it’s true, it is out of control. For someone like me, who likes keeping the house clean and organized, the room makes me anxious. But the crazy room is actually more representative of my true emotional state than the rest of the tidy house. The crazy room has unopened boxes, piles of cords and computer stuff, unfolded clean sheets, my partner’s plaid shirts hanging from an IKEA shelf like little headless Grunge creatures, a dead plant, my ileostomy supplies (thank you cancer), a giant box of small catheter tubes (again, thank you cancer) and various other randomness.

And just like I side-step and avoid the issues that I don’t want to deal with, I also breeze right past the dead plant – sitting on the floor – to put in a load of laundry. Why not just pick up the plant and put it out in the green bin? That is what an emotionally healthy person would do, I think to myself as I breeze out of the room again. But somehow that damn dead plant and the rest of the crazy room has come to symbolize all the ways in which I am emotionally stuck, frozen, paralyzed.

I am extremely lucky in that I can afford to see a therapist, it’s a luxury many needy people don’t have. So in a sense I have an ’emotional cleaning lady’ who helps me clean up my personal crazy room twice a month. And yet, somehow, it seems no matter how hard I try, my crazy room never gets completely cleaned. Just as my cleaning lady and I finish cleaning one area of the room, another area beckons for attention. Its boxes need unpacking, its cords need untangling and its damn plant needs to be thrown out!

Low-Rider Love

Growing up, I was always the girl who dreamt of getting a dog, not of getting married. In the end I did get married and it didn’t work out. The highlight of my marriage was meeting my first real love – a low-rider Corgi with a spirit like no other – I named her Quinny.

Everyone who met Quinny loved her. It was impossible for anyone – even the grumpiest, most miserable souls – not to smile when she strutted by on her two inch stubby legs with her sassy wiggle bum. She was pure Joy! I remember gangbangers driving by in their vintage car and calling out “Hey Low-Rider!” The same thing happened with tough mortorcyle riding men – they got such a kick out of her! And the hipsters at Figaro Bistrot loved her too. The one time she ran away – escaped from the backyard – she went around the corner to Figaro for croissant and Cafe au Lait!

I think of her often and I’m so grateful to her for sharing her spunky spirit with me.

Stanley

Stanley awoke from a long luxurious sleep, stretched and then set out walking. He turned down the alleyway behind Greenwood Avenue and headed to the grey duplex with the blue trim, number 105. The back gate was open, so he strolled in. He was hungry and was looking forward to having lunch with Mrs. Blackwell. He sat on her deck for about five minutes, enjoying the mid-day sun while waiting for her to appear. Then he decided to take a stroll through her backyard since she was obviously running late.

Mrs. Blackwell had recently added new planters which were filled with pink flowers that smelled like delicious candies. He also noticed a new herb garden, each herb had its own little sign: “basil,” “oregano,” “mint.” He took a little taste of the mint, it was lovely and made his mouth tingle. In the back corner of the yard Mrs. Blackwell had moved her porch swing, which had received an update with bright new yellow cushions. Stanley decided to wait there since it was out of the sun and under the shade of a big leafy tree. He settled in for a mini-nap while Mrs. Blackwell finished up with whatever was making her late for their lunch date. He dozed happily, enjoying the swaying of the tree’s leaves above him – it was as if he had his own “garçon” fanning him. The sweet garden smells made his stomach gurgle, he could hardly wait to eat.

“Stanley!” called out Mrs. Blackwell. Her voice was soft, with a hint of a Southern twang. Mrs Blackwell had grown up in Texas and though she had lived in Toronto for twenty-five years she still considered herself a die-hard Texan, she even had a “Don’t Mess with Texas” plaque on her front porch. Stanley headed over to the deck and joined Mrs. Blackwell at the patio table under a huge umbrella which she had opened to shield them from the sun. She had set out two plates of food, iced tea (she was Texan after all) and water. She smiled at Stanley, thankful for his company. Ever since her husband Earl had passed away last year she had been terribly lonely. Having a daily lunch companion who lived right in her neighborhood had lifted her spirits and put a little spark back in her step.

She sprinkled salt on her fresh avocado and tomato sandwich and took a small dainty bite. “A little slice of heaven!” she said. Stanley was focused on opening the shell of his giant peanut and extricating the nut. He tried his best to eat as little of the shell as possible. He chirped away happily as he finished his peanut and moved on to his walnut. Mrs. Blackwell loved to watch Stanley eat. It was like watching an artist at work, he ate so speedily, yet with such grace. She told Stanley about her busy morning. She had baked a cake for a friend’s birthday, cleared out her husband’s bedroom closet – which she had been procrastinating about – and called her doctor about the arthritis in her left knee which seemed to be getting worse. Stanley chirped and swung his tail around in sympathy.

As per usual, Stanley took the last few nuts and stuffed them in his mouth. Mrs. Blackwell knew his habits well. Now he would be off to hide the nuts for later and hopefully, if his memory served him, he would remember where he had hidden them. “Good-bye Stanley! See you tomorrow!” called out Mrs. Blackwell. Stanley chirped and scurried away quickly. It was crucial that he bury his nuts before other squirrels noticed that his mouth was full. Otherwise he ran the risk of having them secretly follow him and then steal his delicious, organic, Trader Joe’s nuts. It was a tough world out there, but at least he had his good friend Mrs. Blackwell, she was a gem.