Ways in which cancer is making me weird (or weirder). Part one:

Since the day my oncologist diagnosed me with a rare, incurable cancer, one for which long-term survival is considered five years, I have become obsessed with getting rid of my belongings.

It’s not that I’m into Minimalist Living, the trendy lifestyle of the moment, because I’m a proud Maximalist. Nor am I following the advice of best selling author Marie Kondo, whose book “The Life-Changing Magic of Tidying Up,” advocates purging everything which does not bring us joy. Most of Kondo’s system just doesn’t work for me. I tried following her strict rules, but halfway through folding my socks so that they stood upright like mini soldiers in my drawer, I lost my freaking mind. I started dressing up my, (now deceased dog), Leroy, in my old sweaters:

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I have so many lovely things (most of them not practical – that’s my specialty) and each piece brings me joy. Therefore I should keep them all, right? I’ve never heard anyone say: “I want less joy in my life please.” Note: I am not an actual hoarder. As part of a volunteer job I used to visit an elderly woman who was a true hoarder, so I know what that chaos looks like; I’m just a collector of pretty things.

The kind of de-cluttering and purging that I engage in, is fueled by my deep anxiety that I will die soon and that my partner with be stuck with all of my stuff. He will be devastated (his word) and in addition to processing his own grief and dealing with my family, (they love him deeply and consider him their son-in-law), he will have to go through all of my belongings. Having never had to be in charge of such a depressing task, I can only imagine how difficult it would be. I see my compulsive de-cluttering as preparation for my death and as something that will make my partner’s life a little bit easier down the road.

Of course the deeper truth here is my desperate need to control something, anything.  I can’t control my cancer. I can’t control how my body reacts to cancer treatments. I can’t control the myriad of complications that arise. But I can control how much stuff I leave behind and that makes me feel less powerless.

So I continue my regular mini-purges. I keep most of my vintage items, like Pulp Fiction books with wonderful cover art, my hoop earrings circa 1980’s high school years, my pink rotary telephone…

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But I’ve given well over half my wardrobe to charity. Since I now have to wear an ileostomy bag, most of my fitted clothes no longer work, so I’ve freed them from their closet shackles so they can now bring joy to other women: women who are suffering in unimaginable ways – fleeing abusive partners, struggling to put food on the table for their kids, trying to kick drug addictions…These women deserve every little spark of joy that I can give them.

Gifts were initially harder for me to part with because of the guilt I felt and I must give credit to Marie Kondo for helping me with this issue. She encourages people to let go of unwanted gifts – with love, gratitude and blessings – (or something like that) – and allow others the chance to experience joy.

In my case many of my unwanted gifts were jewelry items. My partner is not a jewelry gift giver, so that wasn’t a problem. And I kept sentimental gifts: an amber stone ring that my youngest brother gave me, my paternal grandmother’s wedding ring, a beaded Goddess necklace that my best friend gave me twenty-five years ago…But all the other jewelry that I had never worn, I cleaned, then bought individual decorative boxes to put them in before dropping them off at a women’s shelter; they would make beautiful birthday and holiday gifts. By helping another woman feel special, I was also – selfishly – helping myself. For each gift that I gave away I felt my spirits lift. It was as if each box contained a magic potion that wafted out and enveloped me, making me feel, (at least temporarily), very happy.

My partner is weary of my de-cluttering compulsion, I think it makes him a bit uncomfortable; it seems a bit ghoulish. He’s also concerned that I might get rid of something that has sentimental value to him, so I’m very careful and mindful of his feelings.

In the end it’s my cancer journey (though I abhor that expression) and if getting rid of stuff that I have no love or use for helps me cope, then I’m going to continue. Who knows, maybe one day I’ll become a Minimalist.

 

 

 

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.

 

 

 

 

 

 

 

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.

Article

 

 

 

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:

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Another favorite of mine (no name needed):

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And they also offer these fab little Dammit Heads:

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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.

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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. 💖