Tag Archives: Peritoneal Mesothelioma

Bony Moronie

“I got a girl named Bony Moronie.  She’s as skinny as a stick of macaroni!”

“Bony Moronie” by Larry Williams was my theme song while I was sick.  My partner introduced me to the great little ditty and it became my go-to song to lift my spirits.  I’ve always weighed between 115 and 120 pounds.  I’ve never been Bony Moronie “skinny” per se – I have the stocky farmer limbs of my Irish ancestors – but I’ve always been slim.  By the time I went into surgery for my Mesothelioma, anxiety (and cancer), had caused me to start to lose weight and I was down to 110.  After the grueling surgery I was fed only ice chips for ten days. ICE CHIPS people, nothing else.

One day my nurse announced cheerily that she was going to weigh me.  Suddenly I found myself standing precariously on the scale, hunched over like a frail old lady. “90 pounds!” cried the nurse, with a touch of theatrical flair.  Ninety Pounds.  OMG.  What normal 47 year-woman weighs 90 pounds?!  The number horrified me.  At that time I had not yet viewed myself in a full-length mirror, I had only seen my face in my makeup compact.  I was not emotionally prepared for how shocking my appearance truly was.

It wasn’t until January 2015 when I saw myself naked in a large mirror.  I was at the rehab hospital and tipping the scales at 96 pounds.  I remember the moment I saw my whole figure for the first time, I had sort of an out of body experience.  I looked at the pale, stringy haired, emaciated woman in the mirror and wondered who she was.  It was very difficult and painful to accept that I was looking at my own reflection.  From that moment on I mostly tried to avoid looking at myself, for I feared that I would spiral down into the depths of despair and not be able to climb back out.

One of the things that drives me bat-sh*t crazy is the expectation by many people that because I am “lucky to be alive,” I somehow don’t have the right – or it’s deemed in poor taste – for me to talk about how bad I feel about my body.  As cancer survivors we are allowed to feel both tremendous gratitude for the second chance at life and simultaneously feel deep pain about the ravaging of our physical selves.

And with that, Larry Williams – take it away…

Cookie Monster

In the late summer of 2014 I started having panic attacks.  It was as if my psyche knew that something was very wrong before I actually found out that I had cancer.  My anxiety was making it hard for me to eat and I was starting to lose weight (of course the cancer was also causing me to lose weight but I didn’t know that at the time).  Fast forward to the Fall when I was diagnosed with Malignant Peritoneal Mesothelioma, my anxiety levels went off the charts.  So one of my dear friends, whom I have known since our University of Toronto days, made me Pot Chocolate Chip cookies to calm my nerves.  Like many things in life, it seemed like a good idea at the time…

One night, after not being able to eat more than a few forkfuls of dinner, I took a small bite of one of her cookies.  It tasted horrific and I worried that perhaps I was going to be accidentally poisoned.  I didn’t feel anything right away and like a complete idiot I took another bite.  Big Mistake.  Next thing I remember I was organizing the bathroom.  I became enthralled with the toothbrush holder and spent a long time placing it “just so” on the counter.  Then I became obsessed with my face, staring at myself in the mirror, admiring my small pores.  But then there was a shift and all of a sudden I was on a BAD trip!

I ended up at the local hospital, where they already knew me well from my various panic attack freak-outs.  At the front desk the nurse asked me why I was there.  I said “because I have cancer and I ate a pot cookie and now I am having a very bad and scary trip.”  She motioned me to the waiting room where my dad sat with me  – bless his heart – until my partner arrived.  I sat low in my seat, trying to hide from the others whom I deemed all highly suspicious.  Once my partner arrived I was interviewed by another nurse.  I told my story and then I threw up in a small bowl that magically appeared before me.  I was very scared.  I was like the lamest drug taker in the history of drug taking.  The nurse put me on a gurney in the waiting room so that I could “come down” while my partner stood next to me listening to my gibberish (he’s a saint).  Unfortunately it was a busy night at the hospital and I live in a big city – Toronto.  So very quickly the hospital waiting room filled up with characters right out of a Law & Order episode.  Next thing I knew I was lying in my gurney next to two crazy broads who were each shackled to their gurneys.  There was also a gaggle of police officers.  Why oh why did I eat that second bite of the cookie?!   I was also in a panic because I couldn’t remember if I had properly disposed of the rancid cookie.  I was paranoid that my dog Leroy would eat it – though looking back now I realize that the cookie smelled so disgusting that Leroy would have – unlike me – just said no.

Moral of the story:  take one bite and wait, wait a long time.  Or, better yet, ask your doctor for some medicinal pot.

Go Juice Yourself

If one more freaking person tells me that juicing will prevent my terminal cancer from returning, I will strangle them.  Or, at the very least, I will de-friend them on Facebook. Believe me, I know all about juicing – I lived in Los Angeles for twelve years!  And it’s not like I’m sitting around all day eating Doritos and drinking Orange Crush!  I eat a balanced diet, but I also include one daily treat – like a couple of cookies or a bowl of ice cream.  I inherited my sweet tooth from my paternal Grandmother who used to hide chocolate bars all over her house!  If anything, I am more aware than others about the importance of diet because I have an ileostomy.  With ileostomies, and mine is a “high-output” one, food (or juice!) goes right through you.  So I am very aware of getting enough calories and nutrients to keep my immune system strong.  I have managed to get myself back up to 115 pounds – from a low of 90 pounds! – so I clearly know what I’m doing.  I understand that people just want to help and that often they don’t know what to say and I truly appreciate everyone’s concern.  But please, enough with the Juicing.

The Great Escape

After having two surgeries and the trendy “shake & bake,” (aka HIPEC), to treat my Peritoneal Mesothelioma, I was put on some serious drugs.  I was out of my mind and delusional.  I was SO high that although I was hooked up to a gaggle of tubes, I was determined to escape from the ICU.  LOL!  I had decided that I hated my entire medical team and that I was more than ready to leave the hospital to recuperate at home.  So I asked my partner to retrieve my belongings for me & bless his heart he did.  “Where are my skinny jeans?! I don’t see them!” I cried like the lunatic I was at that moment, as I weakly rifled through my bag.  I eventually found everything I needed and then lay back in bed, satisfied that I had my outfit ready for my upcoming great escape.

Shortly thereafter, unbeknownst to me, I was restrained to my bed with some soft canvas ties.  I didn’t understand what they were, but I didn’t like them, so I tried hiding them under my sheets – even in my hot mess state I still had a sense of style and I thought the ties were hideously ugly!  Later that day I was lucky enough to get my own private nurse!  I felt like a movie star!   She sat next to me and when I asked her she told me all about her family and showed me photos on her phone.  She even braided my hair!

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I loved having my own nurse, everyone should have this luxury I decided.  What I didn’t realize was that the lovely nurse was actually my “minder,” – she was there to make sure that I didn’t try to pull out my tubes and escape.  Again, LOL.  Needless to say my plans were thwarted. After what seemed like an eternity I graduated to a room in the Step-Down unit. That at least felt like an accomplishment, though not as satisfying as had I actually escaped!

Scanxiety

Another three months, another cat scan!  I brought Mindy Kaling’s book along to keep me entertained while I drank the always gruesome “contrast shake” – if only they had vodka in them, they would be so much tastier!  I don’t mind the actual scans, it’s just the waiting that’s brutal.  They should really have a drive-thru style cat scan, where you can get your scan & report at the same time. Then you would be handed either a glass of champagne, “no visible cancer!” or a Xanax, “cancer has spread to the liver…” Genius idea, no?

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Urethra, Where Art Thou?

My surgical oncologist, a fantastically tall and freakishly young looking Doctor, told me exactly what to expect after my surgery:

  • He told me I would feel like I had been hit by a truck.  Lovely.
  • He said that he would be giving me a stoma/ileostomy, since he was performing a resection on my bowel.  Disgusting.
  • The hot chemo that he would be pouring into my abdomen while I lay on the operating table, (called HIPEC), would cause some hair loss.  Thank God I was starting off with 80’s style Big Hair.
  • He added that, unfortunately, he would have to perform a hysterectomy so I would go into early menopause.  Fuckety Fuck Fuck.

I remember taking a Xanax while he rambled on, but I also took diligent notes in my little spiral notebook, adding lots of exclamation marks and angry faces.  As hellish as this whole ordeal sounded, at least I knew what to expect.  Or so I thought.

Fast forward to three weeks post-surgery.  After various complications, including a couple of days of being delusional where I was convinced that my mind was being taken over by something called “Crowd Sourcing,” – LOL! – I finally graduated from the ICU, to the Step-Down unit, to my own regular hospital room.

Throughout this period I had a catheter, since I was too weak and sick to get out of bed. Plus, my left leg no longer worked.  I had awoken from surgery to find that the femoral nerves had been damaged.  Are you fucking kidding me?! Apparently I had been splayed out on the operating table for so long that some of the nerves had checked out.  My surgeon reassured me that “most likely” I would regain full mobility.  NICE.  Could this get any worse?  Why yes, actually, it could.

One day my nurse said “let’s have you pee in a bed pan!”  She said it with an air of excitement, like we were about to go see our favourite band perform.  It sounded like a reasonable enough suggestion, though I wasn’t sure I was strong enough to pull myself up.  But I was game to start peeing again, I hated looking at the giant bag of urine attached to my bed.  So I tried.  But nothing came out. Not even one freaking drop. “Don’t worry,” said the nurse, “your bladder is just waking up.  We’ll try again tomorrow.”

After five weeks in the hospital – and no peeing on my own – I was transferred to the Rehab Hospital to work on regaining strength and learning to walk again. The nurses there were hardcore – they were like the Gangsters of Nurses – they immediately yanked out my catheter and started “bladder training.”  I had to try peeing on my own every two hours.  But nothing came out and I was in major discomfort.  After six-eight hours a nurse would scan my bladder – “it’s completely full!”  Really?!  How shocking!  Then the nurse would perform an “In and Out,” which is basically sticking a well-lubed skinny tube up my urethra and draining out the urine into a pan.  Cue “The Glamorous Life” by Sheila E.

I loved most of my nurses, but there was one crazy-assed broad who I hated. She acted like it was my fault that I wasn’t peeing and that it was a major imposition on her to have to perform an “In and Out.”  Instead of properly sterilizing my urethra, she would just THROW sterilized water – from a far distance – on my entire vagina.  Then she would start searching for a flashlight because she couldn’t find my urethra.  LOL.  Often she would attempt to put the tube in, but instead she would jam it up my vagina.  OMFG!  Are you kidding me?!  Where did this nurse go to school?!

At this point my cancer wasn’t even my main concern.  All I could think about was the fact that I was a ninety pound skeleton with thinning hair who couldn’t pee or poop.  Were it not for the support of my amazing partner, family & friends I would have surely slid into a deep, bottom-less depression.  Then came the day when one of my favorite nurses dropped The Bomb: “so, today I’m going to teach you how to do your own In & Out.”  Noooooooo!!!!!!!  This can’t be happening.  This can’t be my life.  How is it possible that after leaving a crappy marriage and finally meeting the love of my life, I now have terminal cancer, my bowel sticking out of my tummy and I have to stick a tube up my f-ing urethra every time I need to pee?!  “Are you there God?  It’s me, Mary Ellen.  This is bullshit!  Thanks for nothing!”

Thus began a 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 imperceptable slit that is kind of hidden by the rest of the female bits.  I now understood the crazy-assed nurse’s need for a flashlight.  Maybe I’m in the minority and I missed a crucial health class back in grade school, but I honestly didn’t really understand where the urethra was. Yes, I have a degree from The University of Toronto, but I studied Philosophy and Religion, trust me, urethras were not covered.  So I looked at google images of the female anatomy.  I used a mirror to watch what the nurses did.  When I couldn’t sleep, I used the light from my cell phone to search for my elusive urethra.  And then, finally, “The Big Reveal.”  Just like those reality makeover shows where the formerly dumpy looking woman with Sister Wives hair walks out on stage to great applause, looking chic & fab, I excitedly and with great fanfare, found my urethra and drained my own urine!   I basked in the glory of the moment, telling every single person I encountered about my ninja-nurse like abilities.  I was a Rock Star.

A few days later I was discharged from the hospital with a supply of pee sticks, lube, a giant splint on my leg and a cane.  It would be six more months until my bladder woke up.  I became a pro at self-catheterizing, my urethra and I were besties.  Then, one day, my bladder awoke from its epic long sleep.  I sat down on the toilet and heard a beautiful noise – the swoosh of urine hitting the toilet bowl.  OMG I am peeing!

 

 

 

Ron

I named my stoma Ron.  I think of him like I think of those ugly, comfortable, European made shoes that many women start wearing in middle-age: necessary, but unfortunate.

There is no way to prepare yourself for getting a stoma.  Though my surgical oncologist had explained their function and I had obsessively researched them, the moment you first see the red, bulbous stump sticking out of your belly is brutal. The stump, in my case a loop of my small bowel, moves: it goes in and out, kind of like a turtle’s head. Sometimes it sticks out far, other times it is almost flat.  I saw myself like a scary creature from a 1950’s B horror movie: my stoma growing huge and spraying all the townspeople with a disgusting poisonous liquid.  “Attack of The Stoma Monster!”

The Stoma Nurse, (there’s a job title for you!), visited me after my Cytoreductive surgery and told me not to worry about my stoma/ileostomy.  I could still have sex – just wear the mini-bag! – I could do yoga!  I could even surf!  Surf?!  Just the suggestion of surfing seemed mildly insulting.  I had been in the hospital for weeks with many complications after my surgery for Peritoneal Mesothelioma. I’d endured “Hot Chemo” and I was down to a skeletal 90 pounds.  Ya, I’m gonna go surfing, go Fuck yourself I thought to myself.

When my mother first saw my stoma I thought she was going to throw-up.  “It’s really not so bad,” she said gagging.  Yes, it really is so bad.  There is no way to sugar coat it. Having your bowel poking its red head out of a hole in your stomach and spewing out vile smelling liquid into a bag which is stuck to your tummy really fucking sucks.  I would not wish this on my worse enemy, not that I have any enemies, but if I did I would never wish this upon them.  Though, it would be good punishment for terrorists, murderers and extreme nut-bar right-wingers – punish them by giving them stomas.  Genius!

There is a chance that I can get “reversal surgery,” which would basically send Ron packing, but I think my chance is quite small.  My surgeon is worried about possible “quality of life issues,” meaning that he’s worried about me not being able to hold my poop.  Nice.  The glamour never ends.  At least with Ron and my little beige stick-on bags, I can go out and about with a fair amount of ease. Though it may sound like I am not grateful, I am.  Of course I am.  Ron is a life-saver.  The long term survival rate for those with Peritoneal Mesothelioma is five years, though some lucky patients have lived much longer.  So, if I am lucky enough to live a few more relatively healthy years, then I am more than happy to spend those years with Ron.  I promise to take care of him.  I will wash his stumpy little red head, keep the skin rash-free and eat enough to keep up with his relentless pace.  Ron and I will be together till death do us part.

Below is a picture of Ron.  He is actually a lovely shade of lipstick red!

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Ovarian Cancer – Not!

There’s nothing like thinking you have Ovarian Cancer, being operated on by one of Toronto’s top Gyno-Surgeons and then having the surgeon be shocked when she discovers an X-Files like tumor jammed in your pelvis. Houston we have a problem. I like to imagine that my surgeon swore out loud when she saw the mass: “oh for fuck’s sake, what fresh hell is this?!”

It turned out that Ovarian Cancer was just a pipe dream. Instead, I was diagnosed with a rare terminal cancer that no one had ever heard of and no one could pronounce: Peritoneal Mesothelioma. WTF? Of course I googled it. I read that I would be dead ASAP and I also read that asbestos causes Mesothelioma. I didn’t doubt that I’d been exposed to asbestos. As a child in the 1970’s I was sure all my schools were filled to the brim with the toxic powder, but to get cancer from it? It all felt very Erin Brockovich. Maybe I would write a screenplay. I would cast Keri Russell to play me, not because we look alike, but because she was amazing in “The Waitress” and I was a huge fan of “Felicity.” The film would win Keri her first Oscar and in her acceptance speech she would thank me for my bravery and spunk. Of course I would be long dead, but since I plan of becoming a ghost when I die, I would celebrate the win with my fellow ghost friends. Ain’t no party like a ghost party.