Tag Archives: Dying

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 some gifts that had sentimental value: 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 tad 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.

 

 

 

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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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