Tag Archives: Mesothelioma

You

You. You were overly stylish for a doctor, with hipster-style thick-framed glasses and Saks Fifth Avenue shoes. I suppose you were handsome too.

You were the “Neurology Consult,” my Oncologist had asked for your opinion regarding my leg. My left femoral nerve had been damaged during my abdominal surgery. Made no sense to me at the time, but apparently when your body is splayed out on an operating table for nine hours it sometimes rebels in strange ways. My Oncologist wasn’t sure I would ever walk normally again, so he called you.

You. Who sauntered in; swagger for days, like a Hip-Hop artist in his prime.

Me, ninety four pounds and pale. Sweating, because my reproductive system had been hacked out. Hair wild, matted and un-washed. A bag full of urine hanging from my bed and my stoma spewing waste into another bag, hidden under my gown. But I wasn’t a complete savage. Each morning I cleaned my face with facial wipes, brushed my teeth over a cardboard bowl and applied a tinted lip balm. Putting on “my face” was the only thing I could still do on my own; it was my daily routine that spoke to the little shreds of hope that still lingered within me. The shreds that whispered, “don’t worry, you’re going to be okay.”

You. You lacked warmth and empathy and you obviously got off on the power you wielded. You were like that character in one of those movies where the villain is stylish, has a closet full of identical grey suits and enjoys cutting up women.

You flicked a pencil on my leg and said, “hard to know how much damage has been done. Maybe you’ll walk normally again, maybe not. You might have a limp. You might have to use a cane.” You flicked the pencil again on my leg. You appeared to be conducting some sort of test. But all I could think was, “is this the most sophisticated test I’m going to get? A pencil test?!”

Despite the fact that you sickened me, I was a trained people pleaser, especially with men. So I said breezily, “Oh well, I’m just happy to be alive. And they’re going to send me to physical therapy, so that might help.” I smiled widely with my tinted lip-balmed lips.

You glanced at me, a bored, dismissive, vaguely disgusted look on your face. You flicked your pencil a third time on my leg and it shattered, leaving little pencil shards all over me.

Then you left without another word. Off to humiliate another unsuspecting patient. Or perhaps to steal medical instruments to use later that night to dismember the woman’s body you currently had chilling on ice in your swanky condo.

Minutes passed. I sat, frozen, trying not to cry. One of my favorite nurses appeared, “how’d the consult go?” she asked, as she drained urine from my bag. I pointed to the pencil scraps on my leg. “What?! He just left you with pencil pieces all over you?!” She kindly swept them away and said something under her breath that I couldn’t make out.

You. You better hope that I never see you on the street. Because I can walk now, without a limp, without a cane. My leg healed itself because it knew that one day I might need it. I might need it to run towards you. To run towards you and un-leash my rage. And to un-leash the rage of all the other patients whom you treated so badly.

I’m just a girl with incurable cancer, I have nothing to lose. So I will run towards you and before you know what’s happening, there will be a torrential downpour of pencil shards (it’s my fantasy, so on this particular day, when I see you – perhaps outside of the hospital where I still go for cat scans – I will just happen to be carrying a giant sack of pencil bits and slivers ). And the pencil shards will cover you and poke you and fall into your five hundred dollar loafers. And the nurses and doctors who are outside the hospital drinking coffee and having a smoke will not help you. You will be alone and you will feel vulnerable. What’s that saying? Oh yeah, “Karma’s a bitch.”

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Cookie Monster

“Reason for your visit to the ER tonight?”

“Umm, I’m having a bad trip. I ate part of a pot cookie.” Dear God the humiliation. The nurse lowered her head and squinted at me over her glasses. “And I have cancer!” I blurted out.

“Please take a seat over there,” she said pointing.

I sat down in the waiting room, which on a Friday night was hopping like a club. My dad, who had accompanied me, took a seat next to me. If I remember correctly I think he was reading The New Yorker, which he’d brought with him from home.

Feeling paranoid from the weed, I decided I needed to “lay low,” so I slithered down in my chair, the lowest I could go. My dad peered down at me out of the corner of his eyes; no doubt he was counting the minutes until my partner arrived to take over babysitting. I tried sneaking a peak at the others sitting around me; they looked like a pretty rough crowd.

“Dear God, Goddess and Universe: I’m having a bad trip and I’m surrounded by sketchiness. Can you please help? Thank you.”

My partner arrived, greeting my dad as if nothing the least bit strange was transpiring. My dad wished me luck – like I was about to write an exam – then left. Soon after I was sitting with my partner at a nurse’s desk as she took my vitals. I explained that I had been eating the cookie, (baked by a well-meaning friend), in an effort to soothe my anxiety enough so that I could eat a proper dinner. Since my recent cancer diagnosis I was having great difficulty eating and had already lost seven pounds.

“I had one bite and it tasted awful, like poison. But nothing happened so I took another bite.” The nurse looked at me, as if to say, “don’t you know anything?”

“Then I was in the bathroom for a long time, re-arranging things and looking at my pores.” I’m pretty sure the nurse was silently judging me at this point.

I continued, “and I felt good, but then I started freaking out…” I trailed off.

As if by magic, I was suddenly presented with a cardboard bowl and I barfed up some banana. I tried throwing up daintily – I mean despite this horror I was still a lady.

The decision was made that I would “ride out my bad trip,” on a stretcher in the waiting room, positioned a bit off to the side. I lay down feeling at once very safe and very exposed. I babbled to my partner, clutching him at times as if I were in grave danger.

“Am I seeing what I think I’m seeing?” I asked him. The waiting room had suddenly become an episode of Law & Order, with two belligerent women handcuffed to their respective stretchers; police officers standing nearby. I wondered if the women were high on drugs too. “My God,” I lamented to myself, “look at the depths to which I’ve sunk. I’m on drugs and hanging out with criminals.”

Several hours later, no longer tripping and back at home cuddled up with my dog Leroy, I reflected on one of life’s most important rules:

When eating edibles, especially homemade edibles, refrain from acting like The Cookie Monster.

Take one bite and wait. Check your pores, re-arrange stuff, do whatever you want, but do NOT take a second bite right away.

Wait and then wait some more.

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Hospital Room Decor

Back in April I wrote a post about having so many flowers in my hospital room that it started to look like a funeral parlor.  If you have a loved one battling a serious illness, consider buying one of these non-flower gifts to lift their spirits and brighten up their hospital room:

One of Emily Mcdowell’s amazing Empathy Cards: image

Add some razzle-dazzle with this fabulous gold planter from the Oh Joy! Collection for Target.  Btw, I own this ladyface planter and she makes me so happy!  If you really want to give flowers, place a colorful orchid inside, or fill it with hospital necessities: lip balm, facial wipes, sleep mask, earplugs and candy (if they’re able/allowed to eat it).

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If the patient is in the hospital any longer than a week, a colorful lightweight blanket is perfect.  When I was in the hospital I had a bright red blanket, it was cozy and it helped to make my room feel less institutional/jail-like:

Indigo sells this blanket in several colors:

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A sleep mask makes a great gift for both men and women.  Trying to sleep in the hospital – with the God awful hospital lights blaring at all hours – is frustrating as hell!  Here is my partner sporting a handmade mask that I bought in downtown Los Angeles (LOL!):

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More conventional, but no less colorful sleep masks, are available at many drugstores, Bed Bath & Beyond, large bookstores, Amazon, Sephora...💤💤💤

Finally, a framed photo of your beloved pet is a wonderful idea for a hospital room.  When I was trapped in the hospital for two months, my old dog walker brought be a framed photo of my precious dog Leroy.  Seeing his face each day kept me going; I knew I had to focus on getting better so that I could see him again.❤️🐾❤️

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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…

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Intimacy After Cancer Treatment

I wrote an essay about navigating intimacy after cancer treatment which was just published in The Globe & Mail Newspaper.  I am grateful to them for sharing my story.

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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.

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For more amazing cards:

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

 

 

 

#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.