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.

 

 

 

 

 

 

 

Dammit!

After my surgery and heated chemotherapy (HIPEC), I spent two months in the hospital.  At one point my room looked like a funeral parlor, there were about twenty floral arrangements.  Now I love flowers and I love receiving them and I was/am hugely grateful for the kind gestures of my friends and family.  But we need to mix it up a little, too many flowers can make a patient feel like a priest is about to walk through the door to administer their last rites.  So what to buy your loved one instead?  I recommend “Dammit Dolls.”  They are bright, joyful, nutty little creatures that you can bang against your hospital bed when you get frustrated waiting for your morphine.  There are many to choose from, one is even especially designed for cancer patients, with half the proceeds going towards fighting childhood cancer:

image

Another favorite of mine (no name needed):

image

And they also offer these fab little Dammit Heads:

image

To shop the whole collection:

https://dammitdolls.com/shop/dolls/Team-Rocket/Team-Rocket

 

 

 

 

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

#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. 💖

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