I Want It All

I know it’s not a healthy breakfast, but I don’t care. I want a croissant or pain au chocolat, with a strong cup of coffee.

I don’t need a giant Costco bag of apples, just one perfect crisp McIntosh will do.

I want to eat eggs from the happiest of chickens, the ones who run free on a family-run farm. Yes they are more expensive, but you can taste their joy.

My afternoon snack is a piece of cake with frosting covered in sprinkles. It’s a silly cake, the kind you might make for a six year old’s birthday, but it’s what I want and it makes me smile. Yes I will crash from the sugar high and need to nap like a toddler, but it’s worth it.

https://butternutbakeryblog.com/funfetti-cake/

I want to cook dinner like my Aunt showed me, the one who lived in Paris. Cook anything in a cast iron pan with butter and white wine and it will be like dining on the Rue Mouffetard.

Speaking of wine, I want to drink mine from mis-matched vintage glasses, the ones that are etched with swirls and trimmed in gold. And I want to drink it every night.

Before sleeping I want to massage my face with a heavy rose-scented cream. Maybe it won’t take away my wrinkles, but they will enjoy the lovely rose scent and I will too.

I will read a fashion magazine in bed. Not a book about something important. Instead I will look at beautiful clothing designed by artists who paint our bodies with fabric instead of painting canvas. This is important to me and it will help me dream of magical adventures, where I laugh and twirl and love myself and throw glitter down on everyone sleeping, so that when they wake, they exclaim, “whatever happened last night? Why is there a rainbow of glitter in our bed?”

This is what I want. I don’t care if it seems fanciful or silly or not what I should be doing. For the only thing I should be doing is living as my truest self. The doctors said I would be dead by now, that my cancer would devour me, but somehow I am still here. A mystery to them. So while I’m still here, I want it all. And I want it covered in gold sparkles.

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:

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.

 

 

 

 

 

 

 

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!

 

H is for Helena

Helena moved quietly through life.  Disturbing no one. Being a model citizen.  Always towing the line.  Then one morning Helena woke up and thought, “I don’t want to be quiet anymore.”  She called in sick to work, something she had never done in her twenty years of working for the Brexam Accounting Firm.  Her boss was shocked and offered to send someone over with food and medicine.  “That won’t be necessary,” said Helena with a faux cough, “I had the drugstore deliver everything I need.”  Helena was struck by how much she enjoyed lying, the sensation was arousing.

Usually Helena began her day with ten minutes of stretching, followed by a luke-warm shower, a bowl of granola and yogurt and a cup of green tea.  But this morning she skipped the exercise and shower, got dressed and headed out to a swanky hotel restaurant for breakfast. She ordered a Mimosa and Belgian waffles.  The combination of maple syrup and the champagne’s bubbles were perhaps the best thing Helena had ever tasted.  Her waiter was extremely handsome and she flirted shamelessly with him.  As she left the cafe – after leaving him a 50% tip – she whispered in his ear, “you are just delicious.”

Helena grabbed a cab to her local upscale department store and headed straight to the Personal Shopping Department. A woman named Rika, with a severe black bob and thin red lips, asked Helena what she needed help with.  “I need to find the real me.  I seem to have lost her.  My budget is $3000.”  Rika nodded approvingly and motioned to a clothing rack filled with a multitude of styles, colors and fabrics. “Choose one piece that speaks to you, there is no right or wrong.  Just choose the piece that makes you feel alive.”  Without hesitating, Helena followed her instincts and quickly chose a silk, floral dress in shades of eggplant, fuchsia and black.  “Thank you,” said Rika.  “This dress will serve as the inspiration for your new wardrobe.  Also, you need a new hairstyle, you cannot find the real you with that hair.  That hair is heavy with regret, bad memories, a life half-lived.  Joseph at our Salon will cut it, Joseph knows.”

Helena left the store with two garment bags, four shopping bags and something called “a Lob,” which was a silly way of saying a long bob. At home, after carefully putting away all her new clothes and accessories, she poured herself a glass of red wine.  It was an expensive bottle, given to her last year by her boss for Christmas.  She filled a bowl full of pita chips and got in bed.  She turned on the television and watched one of those vacuous Home Hunting shows.  This one featured a woman about Helena’s age starting a new life in Paris.  Helena crunched away, taking in the beauty of the architecture in Paris.  “My God,” she thought, “such a beautiful city.”  She licked the salt off her fingers and took a long, slow sip of wine.  Then she grabbed her laptop off of her bedside table.  She started typing.  Air France. One way ticket, first class.  Date of departure – tomorrow.  A sudden wave of panic overcame her – “my passport!”  She frantically looked in her filing cabinet and there it was – updated and sitting in a pretty red leather case – in a file labelled “Identification Documents.”  Helena exhaled, took the passport and went back to her bed.  After typing in her passport number, credit card info and other information she pressed “Purchase.”  She was not being quiet anymore. She and her “Lob” were going to Paris.