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

#gratitude

Lately there has been a lot of talk about Gratitude, especially on Instagram. According to the eight million lifestyle gurus out there – who all seem to live surrounded by succulents, crystals and those white, fluffy IKEA bear rugs/throws – if we begin each day with our hearts full of gratitude, good things will come our way. Can we just please stop with this faux-spiritual crap? It’s enough already. Being grateful for what you have: loving friends, a roof over your head, food on the table, good health, a job – is hugely important. Those who are not grateful are basically just assholes. But the idea that gratitude is somehow an elixir that will allow light, beauty and positive experiences into our lives is a lie. The problem is that the truth just doesn’t sound as good, it’s not as hashtagable. The truth is that you can start your day full of gratitude – for your life and for everyone and everything in it – AND tremendously shitty things will still happen to you and your loved ones.

Don’t get me wrong, I love the idea of gratitude as a magical potion. It is vaguely comforting, like drinking a glass of wine while swaddled in a velour blanket. And, full disclosure, I own three crystals – I bought them at one of those Witchy Woman type stores, the kind that offer workshops on making your own moon juice. I bought the crystals because I thought they were pretty to look at, although I tried to tell myself that I was buying them for their healing properties. They sit next to my succulents, which are the only plants I can seem to keep alive. But as someone with cancer, I find the whole Gratitude Movement annoying and kind of insulting. The truth is that no matter how much gratitude you bathe yourself in, life is completely random, some of it is just plain horrible and much of it is out of our control. Yet, in many ways this truth is magical. Because in all of its harshness it quickly simplifies things. The shades of grey disappear and POUF! life becomes more starkly black and white – it can be freeing. You become a better editor of your life. For me, these editor conversations sound something like this:

  • Do I want to spend my evening with a woman who will only talk about herself for three hours? No, no I don’t.
  • Do I want to go to a party when I’m not feeling well just because I’m expected to go? Nope.
  • Do I want to make sure that my partner and I travel somewhere wonderful this summer while I am still healthy-ish? Hell yes!

That said, I think we should all use whatever tools and whatever bag of tricks we have to help us move through life with as much ease as possible. And I definitely think that gratitude is essential. Also, it’s entirely possible that I’m just envious of all those who truly believe in the Gratitude-Crystals-Succulents-IKEA Bear Rug/Throw Religion.  I think I secretly want to be one of them. But I just can’t. I like the look, I like the idea of it, but I just don’t buy it.  #butistillwantoneofthoseIKEAbearrugs

Cancer Rant

One of the many annoying things about having cancer is that you are expected to “make the most of every day!” & “live each day to the fullest!”  Frankly that is too much pressure.  And yes, I know I am lucky to be alive.  Many of the people in my private FB Mesothelioma group are doing far worse than I am, or they have already died.  But I reject this pressure to live the perfect cancer life.  I refuse to drink green smoothies, post positive affirmations on social media and joyfully check off items on my bucket list.

Just like everyone else on this planet I have enough to worry about without this added “be the sparkling cancer inspiration girl” bullshit.  I worry about my aging parents who seem to have no long-term plan in place.  I grapple with how best to deal with my sibling who has a personality disorder.  I have relationship problems.  I am trying to figure out a new career path/going back to school, even though some days I am so exhausted and nauseous that I can’t even get off the couch.  I am navigating depression & anxiety.  I am experiencing that weird mid-life crisis, wondering “what does it all mean?”  I am feeling unsettled, missing the U.S. where I spent most of my adult life, but knowing that I will now never be able to move back there.  I am dealing with longing and sadness over the fact that many of my close friends and family live far away.  I am navigating life with our recently adopted senior dog who seems to be in great pain and so now the endless Vet visits begin.  The list goes on and on.  And of course I am indeed one of the very lucky ones because I don’t have to worry about keeping a roof over my head, or having enough money to put food on the table, or fearing for my children’s safety.  So although my worries are nothing compared to those of most people out there, they are enough.

This whole pressure – intensified a gazillion times by social media – to be endlessly grateful, joyful, spinning in positivity while you have cancer is f*cked up and I am not buying into it anymore.  And for the record, I don’t have a bucket list. But what I do have is a two item list of things I get to do when I get very sick, which my partner has agreed to:  1) I get to feed the squirrels peanuts – I know it’s not a good idea but it’s my list & 2) my Pit Bull Dexter The Elderbull gets to snuggle on the bed with me. 💖

Princess Please

Like many women, I suffer from CPPD: Chronic People Pleasing Disease.  Getting diagnosed with Cancer has helped me to become less of a pleaser, which apparently is cancer’s “gift” to me.  But even though I’ve been told that I have only a 50% chance of living five years, I still insist on squandering my days being a people pleaser.

The really insane part is that I often do it with people I don’t even know, yesterday was a perfect example.  I was fighting some type of infection and I was dealing with an episode of depression.  I felt so much grief over my mangled body, the loss of my former high-energy self, the intestine sticking out of my tummy, my missing female parts.  I wanted to cry and scream and yet nothing came out…except a lipsticked smile.

While in a law office getting paperwork notorized, I found myself having to explain Mesothelioma.  So I stood there, feeling ill and deeply depressed and then like a PR Wizard I proceeded to spin an almost upbeat tale about my experience with this “crazy cancer caused by asbestos!”  The pre-programmed Chronic People Pleaser in me didn’t want to make anyone feel “uncomfortable,” so I pretended that everything was essentially fine.  And this is what I do almost every single day. It is exhausting and yet like an addict I can’t seem to stop.

Just as a woman might hide her bad skin under a layer of foundation, I hide my true emotions under a layer of faux “happiness.”  I know this behavior only worsens my depression because each time you don’t speak your truth, you lose a little bit of your soul.  What would happen if I started saying “no.”  What would happen if I started saying “I feel desperate.”  What would happen if I made someone feel uncomfortable?  What would happen if I let people be angry with me?  I need to find out, my soul is begging me.

Tiny Dancers

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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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