Unicorns & Grapefruits

If ever there was the perfect concert to have your ostomy bag leak during, it would be at a Flaming Lips performance. Picture lots of glitter, color, sparkle, inflatable creatures and a lead singer wearing rainbow wings while riding a lit-up unicorn. Part psychedelic rock, part theatre, part performance art, The Flaming Lips don’t put on a typical show.

Among a sea of mostly twenty-eight year olds, many of whom were dressed in colorful costumes and probably high, (no judgement, it’s the perfect concert to be high at!), stood my partner and I, both 49 years old. We fit in just fine. I was dressed in black skinny jeans, Adidas, a colorful long tunic and sparkly necklace. The problem was, instead of eating magic mushrooms or smoking a joint before the show, I had decided to pound back an entire, GIANT grapefruit. Now, keep in mind that I have an ileostomy: the lower part of my small intestine – the ileum – has been surgically brought out through an opening in my abdominal wall (the opening is called a stoma). Visually, it kind of looks like I have a strawberry sitting on my tummy. Ron, as I like to call my ileum/stoma, spews out everything I eat into a bag. Usually food exits my body in liquid form and it is fairly simple to empty the bag into the toilet throughout the day. But, certain foods like grapefruits, get digested differently and they exit my body in a much thicker fashion. So, essentially I had a hideous traffic jam of very thick grapefruit trying to exit my ileum and make it down to the safety of my bag.

Fast forward to me touching my bag – I always check it a million times when I’m out of the house – and feeling wetness! My worse nightmare had come true – a bag leak in public! Sweet Jesus! Thankfully I always carry supplies with me wherever I go, so I made a mad dash to the ladies room. The bathroom had speakers so I was able to listen to the show as I struggled with my bag explosion. In the stall next to me was a young woman wearing a unicorn headband. She was in her stall for almost as long I was in my mine. I’m not sure what she was doing, but I’m pretty sure she was having more fun than I was.

The bag clips on to a sticky thing called a “flange,” which is what encircles my ileum. After doing a bag change I always lie down and apply light pressure with my hand to the flange and bag: the warmth of my hand helps to properly affix the flange to my skin. So I decided to half sit, half lie on one of the chairs in the lounge section of the bathroom – LOL. I watched as 28 year olds wearing faux ripped jeans, applied massive amounts of eyeliner and lip gloss. They looked so fresh and shiny and beautiful and for a moment I felt like crying out of envy. I’m sure I looked like a total weirdo, half lying on a chair, holding my mid-section. But thankfully no one bothered to ask why I was splayed out so strangely – they probably just thought I was tripping hard on psychedelics. So again, it was the perfect concert to be at.

We had to leave a little early because my tunic was wet and I was exhausted from the emotional drama of the experience. But before going I was lucky enough to see their lead singer Wayne Coyne, perform David Bowie’s song “Space Oddity,” while surfing the crowd in his giant clear ball. So thank you Flaming Lips for helping me to survive my first public bag leak. #unicornsandgrapefruits

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Photo from blog.TO.com

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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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

 

 

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…