Tag Archives: Cytoreductive Surgery

Death in the land of Facebook

I am lucky enough to be a part of a private FB support group for those with Mesothelioma.  About 70% of the members have Pleural Meso, (lungs), 28% have Peritoneal, (abdomen, my type) and about 2% Peri-Cardial (heart).  There are close to two hundred of us, plus two medical professionals who operate & administer the group.

Thankfully, approx every month we get a new member.  I say thankfully because approx every month we also lose a member, so at least we are replenishing ourselves. One month this year we lost three people.  Pouf! Gone.  Leaving behind their dreams, their children, their spouses and families.  I’ve come to dread FB notifications, always fearing the worse.  One death, a couple of months ago, hit me especially hard.  He was a young man in his late thirties, married with two kids.  Like many other Meso patients, he had to travel a long distance to receive treatment.  Mesothelioma is a very rare form of cancer, there are only a handful of doctors who specialize in, let alone know anything about it.  Since he was going to be away from his family for treatment, we were invited to send him cards to cheer & strengthen his spirit.  I sent a lovely note, writing that I too had Peritoneal and had received the exact treatment he was about to receive.  I wrote him that I would be thinking of him and sending him strength and positive energy and that he was welcome to ask me any questions he might have.

It was radio silence for a long time after that and then….the dreaded FB notification: “I am sorry to report that we have lost another one…”  Nooooo!  He was dead.  Not only was he dead, but he suffered.  The treatment he received, the same one I had received, is called “Cytoreductive Surgery and HIPEC” – and it is fucking gruesome.  But, it is also an amazing invention.  It used to be that with a diagnosis of Peritoneal Mesothelioma you were screwed, usually dying within a year.  But with this treatment patients often gain a few additional years and sometimes even more.

Sadly this young man was not one of the lucky ones and I initially felt very guilty.  Guilty because although I have a partner, family & friends, I don’t have children.  And in some weird way I felt it would be more “just” for me to die and for him, a father, to be able to live long enough to see his children grow up.  Then, after the guilt passed, I started to get angry with “God.”

Hello God, are you listening?  Why can’t you just kill all the evil freakers out there and leave the good people alone?  People always say you – God – have a plan.  But I don’t think you do have a plan, or perhaps you are super disorganized and all of your plans have gotten mixed up and you are killing the wrong people.  Maybe you need a Personal Assistant God.  Someone who can keep all of your plans and paperwork and charts organized.  That way you can focus your energy on killing off all the horrible, bad people and saving the good people – like my nice Facebook friend who died, whose children are now fatherless.  

 I look forward to hearing back from you regarding my suggestion.  Take Care.  Sincerely, Mary Ellen 

Love and Loss

Since my beloved dog Leroy died, the house has been painfully quiet. My partner is enjoying the calm, dog-free environment, but I am not. We have no children, so at night there is just the sound of music playing and laptops buzzing. No pitter-patter of paws, no head-butting, no fake sneezing, no barking, no “I wanna go on a walk” dance performance, no cuddling, no old-man snoring, no silky coat to be combed, no belly rubs, no licks on my face. I can’t live like this.

I want to adopt a dog now, but my partner wants to wait. He wants to wait a long, long time – as in he never wants to get another dog. He is worried that my cancer will start to metastasize, (Peritoneal Mesothelioma), that I will die and that he will be left devastated and having to take care of the dog – something he is not sure he will be up to doing. Now, the thing is, I can’t promise him that all that won’t happen. Right now my cancer is stable, but unfortunately Peritoneal Mesothelioma is rare and aggressive and without a cure. So yes, I could be dead in a couple of years, that’s entirely possible. What’s also possible is that I live for another five years or more. With this diagnosis the average life expectancy is 12 months. But, but for those lucky enough – like me – to be able to have Cytoreductive Surgery and HIPEC, (hot chemo poured in your abdomen), then the life expectancy increases to up to five years and beyond. There are even a few people in my private Facebook mesothelioma group who are ten years into living with their disease.

I don’t know how long I have until this cancer kills me. But I do know that having a dog allows me to experience pure joy and I think joy is the best medicine out there. If I’m being totally honest, I think I deserve that joy and I want it now. And yet, I have this amazing partner by my side. When I was in the hospital for two long months, he visited me every single day. He is not freaked out by my hideous ostomy bag and he is more than happy to continue having an intimate life with me despite my rather mangled looking tummy. He is protective of me and my immune system, buying bottles and bottles of vitamins and making sure I eat enough protein. He is in love with a woman who has a terminal illness – how fucking hard must that be?!! So, how do I reconcile my desire for a dog with my wanting to support my partner as he navigates the emotional war zone of living with cancerdame?

To Be Continued…

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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…

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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