Tiny Dancers

dexter

My rescue dog – Dexter The Elderbull – is finally here!  Earlier this week my brother drove with me to Hamilton to pick him up from his foster family.  The drive home was relatively smooth, though Dexter did try to jump into the passenger seat to eat my brother’s Tim Horton’s donut, but really, who can blame him for that?

Many people have asked me why I adopted an elderly dog – Dexter is a twelve year old Pit-Bull.  What I usually tell people is that elderly dogs have a difficult time getting adopted and they deserve a loving retirement home.  And that’s the truth.  And I’ve always wanted to adopt an elderly dog, that’s also the truth.  But here’s the other truth: with my type of cancer – Peritoneal Mesothelioma – a “long-term survival rate” is considered five years.  I was diagnosed and treated in November 2014.  So far my scans have been good, though that doesn’t mean as much as it does with other cancers.  Often patients with Mesothelioma have regular “clear scans,” then start feeling sick, then get exploratory surgery, only to find out that there are Tiny Cancer Dancers doing The Hustle in their abdomen.  So, my thinking was: “I will adopt an elderly dog and hopefully he or she will die before I do.”  But of course that’s not exactly the kind of thing you say casually to someone at the park, no one wants to hear that.

There was also my partner to consider.  After my dog Leroy’s death in March, my partner didn’t really want to get another dog.  His primary concern was that I would die, he would be devastated and he wouldn’t be able to or want to take care of my dog.  Again, that’s not something that I usually tell people, (other than my family & friends), because I have no interest in making people feel uncomfortable.

Though I am often prone to getting carried away with theatricality, sparkle infused dreaming and wishful thinking, when it comes to my cancer and the strong probability of dying young (ish), I am very pragmatic.  I wanted a dog and I found a creative solution.  One Elderly Dog + One Mesothelioma Patient who naps like a toddler = the perfect joyful solution!

Editor’s Note:  A special thank you to the friends and family who have volunteered to take care of Dexter if ever we need the help.  xo

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…

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!