Tag Archives: Mesothelioma

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

Doll Hoarder

While in the hospital for two months I had very little control over my day-to-day life. I couldn’t walk, I had to poop into a bag and I was dependant on nurses to drain my urine.  I had to find ways to make myself feel like I still had some shred of control over my life and that I wasn’t completely helpless.  So, I became a “pill hoarder,” or, if you prefer, a “doll hoarder” (“Valley of the Dolls” is one of my favorite movies – not sure what that says about me).

Like any skill, pill hoarding requires practice.  Since I was trapped in bed for so long I had lots of time to perfect my craft.  But first, I should mention that I also had my own personal stash of pills with me in the hospital – technically  I wasn’t allowed to, but it’s not like anyone checks your bag.  I had Xanax tucked away in my toiletry bag, under my facial wipes, hand cream and tinted lip balms.  I had been given the prescription by my Doctor to help with the epic panic attacks that began a few months before my diagnosis.  I’m actually very grateful to those panic attacks (I still occasionally have them).  The attacks served as a huge Red Flag Warning: “Something is f-ing wrong with your health!  Don’t stop harassing your doctors until you get to the bottom of this!” is what my “I can’t breathe” attacks were telling me.

Every night I was allowed two Ativan, (small dosage), but I had to take them both at the same time.  I assume that rule was in place so that a patient couldn’t hoard them and then take a whole bunch at once.  Ahem…The overnight nurse would always ask me “do you want one or two pills?”  Well of course I always said two – who turns down perfectly good drugs?  And thus would begin my nightly pill trickery.  Though I adored most of my nurses, I still played this game every night and I had a 75% success rate.  Being a Chatty Cathy I would engage them in conversation and then like a magician I would swallow only one Ativan and pocket the second one.  Later when the nurse was gone I would reach over to my toiletry bag and add the pill to my growing stash. I had no grand plans to take them all at once and overdose, I just liked knowing that I was well-stocked.  Of course there were a few hard-core nurses who knew all about my kind of crazy.  They engaged in no conversation and stood over me like drill sergeants, watching me with frown-y faces as I swallowed both pills.  Those nights of defeat were always hard.  Afterwards I would lie in bed, high from my pain killer drip and the two Ativan and try to come up with new tactics to outfox the frownies.

During this period of intense vulnerability, my pill hoarding gave me the strangest sense of hope.  With each pill I pocketed, I felt one step closer to getting out of the hospital and reclaiming my life.

 

Editor’s Note:  I do not condone pill trickery – please don’t copy my crazy ways!   I had amazing nurses & I am forever grateful to them!

**I wish I knew who created this fab glitter pill image, thx you!**

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Bears, Bags & Crows

I just returned home from a wonderful trip to Vancouver.  I was there to visit my old high-school friend and to celebrate one and a half years of stable cat scans.  I went solo, sans partner, because I wanted lots of girly time.  It was a very emotional experience.  I hadn’t seen my friend – we first bonded in 1986! – for six years and I hadn’t been to Vancouver for twenty years.  Vancouver’s beauty is awe inspiring.  It’s the kind of beauty that makes you believe in God, even if you’re not religious.

At Toronto’s airport security line I was asked to step aside to a private room so that they could inspect my ileostomy bag.  I had explained to them that I had a “medical device” on my stomach.  Looking back now, using the word “device” probably wasn’t a good idea.  It kind of has a nefarious, “red flag,” Homeland Security sound to it, lol! (note: on the way home I said nothing and they waved me straight through security).  Two lovely security ladies escorted me to a sectioned-off cubicle where I raised up my tunic and camisole to reveal my somewhat mangled, scarred tummy and Ron’s unfortunate looking beige click-on bag (Ron is my stoma!😀).  Style note: There should be Wonder Woman themed ileostomy bags, I would definitely pay extra for those!  How much more fun and empowering would it be to see yourself with a mini version of Wonder Woman’s outfit on your belly everyday?!

One of the security officers, (very young), couldn’t hide her surprise/confusion/horror when she looked at my bag.  Poor thing, I think I traumatized her.  I told the officers I had cancer, that that was the reason for the bag (I occasionally use the “cancer card” and I feel no guilt in doing so).  The older of the two ladies was lovely.  She looked at me with compassion in her eyes and she said: “Pray. Pray and you will be healed.” She was clearly a believer and I appreciated her kind words.  Since going to Catholic School for first & second grade, I have been praying every night.  In fact my nightly prayers are long and exhausting because each day I seem to add a new person to my prayer list.  I find praying to be comforting, meditative and it allows me to take a moment to express my gratitude, which I think is important.  But do I think praying will save me?  No, no I do not.

The trip was full of laughter, amazing conversation & good food (except for the Gluten Free cake – never again!). I did get a tad worried when I noticed a critical mass of crows – there were crows everywhere!  And every night at sundown the crows gathered together and flew by my friend’s house on their way to their nighttime retreat – which strangely enough was the TV studio my friend works at. Watching the crows swoosh by my window was a bit unsettling.  I found myself wondering if they knew something that I didn’t: perhaps my Mesothelioma had mestatisized and they were coming to devour me?

Also on my worry list – my worry list is as long as my prayer list – were bears. Vancouver is surrounded by forests and mountains – it looks like the movie “Twilight,” – I half expected to see Edward jumping Vampire-style between the trees. But with all that lovely nature comes many bears!  My first night there I read about a treat-seeking bear who had trashed a Lexus to get to a box of protein bars!  A few days later I found myself waiting for my friend in her SUV.  We had packed snacks and I suddenly realized that the residential neighborhood we were parked in was surrounded by forest – EEK!  I quickly jumped out of the car and joined my friend – there was no way I was going to survive brutal abdominal surgery and chemo only to then be devoured by a bear!

On my way home, at the Vancouver airport, I started feeling very sad.  I wondered if this would be my last visit with my old friend.  Over the last year and a half I have watched as several of my Mesothelioma FB friends have died from this wretched disease.  One day their scans are stable and the next day they are back in the hospital.  Mesothelioma has a “bad rep,” it’s like the Hell’s Angels of Cancer.  It’s known for being very aggressive and brutal.  But for now I will just be grateful.  Grateful for friendship, grateful for a stranger’s kind words and grateful for not being devoured by crows or bears.

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Out & About with Ron

My stoma, Ron, is always busy spewing out everything that I eat and drink.  It is exhausting keeping up with him – staying hydrated and nourished is practically a full-time job.  Though Ron has resided with me on my tummy for a year and a half now, I am still not 100% comfortable bringing him out of the house.

Emptying Ron’s beige click-on bag in a public washroom is stressful.  First of all, I don’t like to be rushed and women’s bathrooms always have lineups.  It takes a few solid minutes to smoothly and cleanly empty the bag.  With ileostomies the “output” tends to be very liquid, so you have to line the toilet bowl with tissue, otherwise there will be a splashfest of gnarly!!  Then you have to make sure that the opening of the bag is perfectly clean before you roll and seal it back up, otherwise you risk burning your skin or ruining your clothes. (Been there, done that!).  Finally, there is the always humiliating scent.  Ron, like most stomas, could use a lesson or two on pretty fragrances, perhaps a little lavender or mint to go with that “output.”  The smell is shockingly hideous.  I have a toilet bowl spray called “Poo-Pourri” and though it does help, (if you spray twice the suggested amount), it is expensive and most people with stomas probably won’t have access to it.  So going to a new restaurant or to a dinner party at someone’s house, I am now always filled with dread, as I don’t want Ron to ruin the vibe or people’s appetite.

Then there’s how to dress to conceal a stoma bag!  Right before my cancer operation – when I got Ron – I had started wearing high waisted 70’s style jeans with fitted tops.  It was a good look on me and it made me feel attractive.  Now I have much more limited options.  My go-to outfit consists of skinny low-rise jeans (the jeans hit me under the bottom of the bag), a snug stretchy camisole to kind of “flatten down” the bag and a loose, longer top.  Thankfully I can pull off this look, but as someone who enjoys clothing I hate not having more options.  Plus, even when concealed, the bag can fill up quickly making you look lump-sided.  The other day I had lunch with my lovely cousin and by the end of eating I was tenderly holding Ron’s full bag – I was cradling it as if I was cradling a miniature alien baby!  Whether I was comfortable or not I was forced to empty Ron’s bag at the restaurant or risk having it explode.  No one can prepare you for the strangeness of having a stoma.  It is heartbreaking, lifesaving and funny all at once.

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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 

Where u at?!

Recently I had to get an abdominal and pelvic ultrasound and the experience was – as many things are in my life these days – absurd.  The technician slicked me down with so much gel that I was worried my ostomy bag would fall off!  The whole process seemed to be taking forever, she scrutinized the computer screen with a concerned look on her face – not what you want to see.  Then she asked me if my gallbladder had been removed during my cancer surgery.  “Why?!  Has it gone missing?!” I cried.  WTH!

Next, she asked me to stand up.  So there I was, naked, except for my Forever 21 banana socks, slicked down like I was ready for some oddball porno, my ostomy bag starting to fill up with its usual liquid grossness and the technician jamming me with the wand.  “The Case of The Missing Gallbladder!” I said with a dramatic flourish.  She did not seem to appreciate my humor.  Finally she found the little bastard!  He was hiding and kind of “flipped over”- whatever the hell that means.  She left the room looking very relieved and I started the process of de-glazing myself.  #glamorouslife

 

 

Turning into Woody

This just in: I am totally turning into Woody Allen’s hypochondriac character in “Hannah and Her Sisters:”

The other morning, while brushing my teeth, I became convinced that the bottom of my mouth – the salivary glands – were swollen with cancer!  I mean I was convinced!  I inspected them and quickly came to the conclusion that they had never been so large and that in the three months since my last CAT scan, my abdominal cancer had taken over my mouth!  I spent a solid fifteen minutes googling and staring at horrible images of mouth tumours.  Then I called my dentist and explained the situation.  I’m sure they thought I was NUTS, but they were totally cool.  Since I was due for a cleaning anyway, they said I should just come in and they would take a look at my highly suspicious, swollen, I’m about to die, cancerous mouth.

On the streetcar over I prepared for the worst.  “Your cancer has spread to your mouth.  We we will have to remove your entire mouth, you will no longer be able to speak.”  I started to sweat.  Walking the few blocks to the dentist’s office I passed a beautiful old church – Toronto has an amazing assortment of stunning old churches – and I decided that I should go in and say a few prayers.  I tossed money in the saint’s box and lit a candle:

“Dear God, please don’t let my mouth become mis-shaped from this horrible cancer.  I already have a tummy that is mangled looking, I don’t want a mangled face as well.  Please help Tom and my family deal with this terrible new diagnosis.  If I need to get traditional chemo, please let me keep my eyebrows.  I don’t mind losing my hair, it’s been fucked up ever since my HIPEC/hot chemo treatment.  I will purchase a nice pink wig with bangs, but I really like my eyebrows.   And please don’t let me get down to 90 pounds again, because I already gave away all of my “emaciated clothing” to The Salvation Army.  Again, please bless my family and Tom.  Thank you.”

After several ridiculous prayers and many dollars later, I left the church and walked the death march to the dentist.  I love my dentist, he is the best.  He assured me that although the bottom of my mouth was larger than most people’s, there was nothing to be worried about.  But, he said it was totally normal that with a large-bottomed mouth like mine I might think there was a problem (bless his heart!).  Oh the Joy I felt upon hearing that my cancer had not spread to my mouth!  I practically danced all the way home and then passed out exhausted on my bed, dreaming of pink wigs and saints and perfect mouths.

 

Don’t Stepford Wife Me

 

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You know that expression that God only gives you as much as he thinks you can handle? Well, I think it’s a ridiculous expression.  But on the off chance that it’s true, then God must think I am one hardcore broad.  Because in addition to dealing with Mesothelioma, (special thanks to Asbestos for giving me this lovely cancer), I also have a Brain Aneurysm to deal with.  Fuckety Fuck Fuck.

On days when I am feeling “oh the glass is so very beautifully half full!” I feel extremely lucky that my brain aneurysm was found.  Most people don’t even know they have one and then one day they’re walking to the 7-Eleven and – pouf! – they die on the spot.  But my brain aneurysm was discovered while I was being treated for Peritoneal Mesothelioma.  I forget exactly why they were scanning my head – that whole time in the hospital is a bit of a blur – but they basically stumbled upon it.  When my Oncologist told me I was like “ok, whatever!” because I had more pressing issues at the time.  But now I’m worried.

On May 18th I  go back to the hospital – cue the scary music – to get my aneurysm “coiled.”  Basically the surgeon packs the aneurysm with platinum coils which prevents it from bursting.  Luckily they don’t have to open up my head lobotomy style – thank you Jesus!  Instead they weave a small catheter from my groin all the way up to my brain.  Is it just me, or does that seem like something that you would see on The X-Files?  I have decided to think of the platinum in my brain as an alternative engagement ring from my partner.  Instead of wearing platinum on my finger I am wearing it in my brain.

Intellectually I understand what the operation involves and I trust my amazing Neurologist.  But I also have an irrational fear that I will wake up from this operation a changed woman, that I will be turned into some weird Stepford Wife. I will go from a tchotke, sparkle loving collector, to a Plain Jane Minimalist.  Or worse, all the things that make me “me” – my many neuroses, my belief that I was a showtune singing Broadway star in a former life, my rule about never leaving the house without lipstick on – will vanish and I will become someone different.  I realize that it’s a ridiculous fear, but there is just something about messing around with my brain that freaks me out.  It feels like I am about to enter an old episode of The Twilight Zone.  Stay Tuned.

 

 

 

 

 

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…