Category Archives: Blog Post

The Crazy Room

This morning as I was tidying up, I briefly entered our laundry room/office which is our “crazy room.” I think most of us have one of these, or the equivalent – a crazy closet, drawer or cupboard. It’s the place where everything you don’t want to deal with goes to die. I found myself thinking that the crazy room is very similar to that space in our psyche where we dump all of our emotional crap that we can’t deal with at the moment.

I keep telling my partner, “we need to deal with that room, it’s out of control.” And it’s true, it is out of control. For someone like me, who likes keeping the house clean and organized, the room makes me anxious. But the crazy room is actually more representative of my true emotional state than the rest of the tidy house. The crazy room has unopened boxes, piles of cords and computer stuff, unfolded clean sheets, my partner’s plaid shirts hanging from an IKEA shelf like little headless Grunge creatures, a dead plant, my ileostomy supplies (thank you cancer), a giant box of small catheter tubes (again, thank you cancer) and various other randomness.

And just like I side-step and avoid the issues that I don’t want to deal with, I also breeze right past the dead plant – sitting on the floor – to put in a load of laundry. Why not just pick up the plant and put it out in the green bin? That is what an emotionally healthy person would do, I think to myself as I breeze out of the room again. But somehow that damn dead plant and the rest of the crazy room has come to symbolize all the ways in which I am emotionally stuck, frozen, paralyzed.

I am extremely lucky in that I can afford to see a therapist, it’s a luxury many needy people don’t have. So in a sense I have an ’emotional cleaning lady’ who helps me clean up my personal crazy room twice a month. And yet, somehow, it seems no matter how hard I try, my crazy room never gets completely cleaned. Just as my cleaning lady and I finish cleaning one area of the room, another area beckons for attention. Its boxes need unpacking, its cords need untangling and its damn plant needs to be thrown out!

Emily to the rescue!

When I was diagnosed with Peritoneal Mesothelioma, a rare, incurable cancer, many people didn’t know what to say to me.  I don’t blame them at all, I wouldn’t have known what to say to me either.  Enter the brilliant Emily McDowell and her fantastic line of Empathy Greeting Cards.  Emily has created cards for those many awkward moments in life when we just don’t know what to say.  Whether your friend is struggling with cancer, infertility, or the death of a beloved pet, Emily’s cards are perfect.  They are humorous and heartfelt and many of them poke fun at the ways in which we try to say the right thing but fail miserably.  As a cancer survivor, Emily knows first hand what it’s like to have friends say cringe-worthy things like, “none of us know when we’re going to die, I could get hit by a bus tomorrow!”  So let Emily’s cards do the talking for you and bring a smile to your loved one’s face.

image.jpeg

For more amazing cards:

Empathy™: What to say, when you don't know what to say

 

 

 

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

image.jpeg

Photo from blog.TO.com

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

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!**

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

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 

Hospital-Chic

image

I can now officially say that I have a sparkly brain!  On Wednesday I had my brain aneurysm “coiled” with platinum, so I’m feeling pretty swanky!  The surgery went smoothly for which I am very grateful.  I only had to spend one night at the hospital and I had the loveliest nurses.  But, my God almighty, I have never experienced headaches like that!  I spent the night riding waves of intense nausea mixed with the most brutal headaches.  They gave me morphine which helped the pain – a bit – but made the nausea worse.   And as with all my recent medical experiences, there was an absurd quality to it: the patient next to me had an odd, bedazzled female visitor who was blasting Celine Dion while performing a weird interpretive dance – in an ICU style recovery room – r u kidding me?!

The doctors wrote me a prescription for Percocet to help with my headaches, which are supposed to last for a few days.  For some reason I felt deep shame picking up the drugs – I felt like a low-life!  I was paranoid that I would become addicted and that I would end up like Nurse Jackie, doing anything to secure my next high.  Once home though, the drugs were a godsend and I spent most of the day in a loopy sleep dreaming of Iron Maiden – who were dressed like Wizards! – flying through the sky.

Editor’s Note:  A special thanks goes out to my cancer!  Had I not been in the hospital being treated for Mesothelioma – where I ended up with “Neuroleptic Malignant Syndrome” after a bad reaction to the drug Haldol – I never would have had my brain scanned and my aneurysm would have gone untreated.  So thank you Mesothelioma!