Skinny Jeans

It was my first time trying on skinny jeans and I was excited. My legs are stocky, inherited from my mom’s side of the family who were all strong Irish farmers. As a teenager I had yearned for my dad’s long, pole-style legs and had even asked my parents if I could get my legs stretched (I had read somewhere that a lengthening machine existed).

At forty-six years old I had long ago accepted by body, but when I slipped into a pair of size 24 skinny jeans and saw my legs looking strangely slim, suddenly my insecure teenage self reappeared and she was ecstatic. Yet the reason they looked slender was because I had lost weight due to cancer. I was newly diagnosed with Peritoneal Mesothelioma, a rare, incurable form of abdominal cancer and I was in denial. “I’ll take them,” I told the shopgirl. And though I’m ashamed to admit it, for the next few weeks I actually liked how I looked. How sick is that? Speaking of sick, during this same period I did not feel well: I had difficulty eating, major nausea and twice daily panic attacks where I felt like my throat was closing.

My cancer “de-bulking” surgery was eight hours long and included the removal of my reproductive organs, a section of my small intestine and my primary tumour which I had named Maude. It also included a treatment called HIPEC, which is essentially hot chemotherapy poured directly into the abdomen while the patient is still on the operating table, aka a chemo bath.

After several days in the ICU, I was moved to the step-down unit. It was there, ablaze with pain and high on narcotics, that I made a decision: I had suffered enough. I would run away from the hospital and fly to Oregon where I had read they had passed legislation that allowed patients to “die with dignity.” But such an escape would be impossible without my skinny jeans.

“I need my clothes,” I whispered in a raspy voice to my partner. Not wanting to upset me, but suspicious of my intentions, he retrieved my hospital bag and put it next to me on the bed. I pawed at it in a drugged-out frenzy, then passed out.

I awoke to a large tiger staring at me from across the room. And someone had brought their dog to work: “I can’t believe they let animals in the hospital!” I said to myself, horrified. My great escape would have to wait, the hospital needed me; I had to keep watch over the creatures infiltrating the building.

Also, I had a new friend whom I had become very attached to and I didn’t want to leave her. A nurse’s assistant had been placed in my room to guard me, since in my delusional state I had made several attempts to get out of bed (while attached to multiple tubes and monitors). Not understanding that she was there to keep an eye on my crazy self, I thought I had my own private nurse-friend and I adored her.

Due to a myriad of complications, I spent two months in two different hospitals. At the second one, a rehab hospital, the nurse weighed me: the scale read 94 pounds, I usually weigh 120. I had lost a great deal of muscle mass; my legs were emaciated, atrophied sticks and my bum was pancake-flat. I avoided looking at myself in the mirror, it was too upsetting. I begged God to help me gain back the weight, promising never to complain about my thick legs again.

In retrospect I think my early fixation on my legs was simply my way of avoiding the intense emotions that were surfacing. I was scared of dying, who wouldn’t be? But what really troubled me was the idea of hurting those I loved. I was blessed with a partner, family, friends and a one-eyed elderly street dog who all loved me. I didn’t want to cause them pain.

Now, two and a half years later, I am back up to 120 pounds and I’m as stocky as ever. I am extremely lucky to be alive, many people with Mesothelioma don’t live more than a year after diagnosis. And though I’m grateful, I’m also aware that I’m living on borrowed time. So now I wear skinny jeans as often as possible. It’s my way of giving cancer the middle finger.

The famous skinny jeans try-on at ShopGirls on Queen West in Toronto.  I had already lost ten pounds here and little did I know that I would lose 20 more…

image

 

 

 

 

 

 

 

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!**

image

 

 

 

 

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.

image

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.

image

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

 

image

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.