Monthly Archives: May 2016

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

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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!

Where u at?!

Recently I had to get an abdominal and pelvic ultrasound and the experience was – as many things are in my life these days – absurd.  The technician slicked me down with so much gel that I was worried my ostomy bag would fall off!  The whole process seemed to be taking forever, she scrutinized the computer screen with a concerned look on her face – not what you want to see.  Then she asked me if my gallbladder had been removed during my cancer surgery.  “Why?!  Has it gone missing?!” I cried.  WTH!

Next, she asked me to stand up.  So there I was, naked, except for my Forever 21 banana socks, slicked down like I was ready for some oddball porno, my ostomy bag starting to fill up with its usual liquid grossness and the technician jamming me with the wand.  “The Case of The Missing Gallbladder!” I said with a dramatic flourish.  She did not seem to appreciate my humor.  Finally she found the little bastard!  He was hiding and kind of “flipped over”- whatever the hell that means.  She left the room looking very relieved and I started the process of de-glazing myself.  #glamorouslife

 

 

Turning into Woody

This just in: I am totally turning into Woody Allen’s hypochondriac character in “Hannah and Her Sisters:”

The other morning, while brushing my teeth, I became convinced that the bottom of my mouth – the salivary glands – were swollen with cancer!  I mean I was convinced!  I inspected them and quickly came to the conclusion that they had never been so large and that in the three months since my last CAT scan, my abdominal cancer had taken over my mouth!  I spent a solid fifteen minutes googling and staring at horrible images of mouth tumours.  Then I called my dentist and explained the situation.  I’m sure they thought I was NUTS, but they were totally cool.  Since I was due for a cleaning anyway, they said I should just come in and they would take a look at my highly suspicious, swollen, I’m about to die, cancerous mouth.

On the streetcar over I prepared for the worst.  “Your cancer has spread to your mouth.  We we will have to remove your entire mouth, you will no longer be able to speak.”  I started to sweat.  Walking the few blocks to the dentist’s office I passed a beautiful old church – Toronto has an amazing assortment of stunning old churches – and I decided that I should go in and say a few prayers.  I tossed money in the saint’s box and lit a candle:

“Dear God, please don’t let my mouth become mis-shaped from this horrible cancer.  I already have a tummy that is mangled looking, I don’t want a mangled face as well.  Please help Tom and my family deal with this terrible new diagnosis.  If I need to get traditional chemo, please let me keep my eyebrows.  I don’t mind losing my hair, it’s been fucked up ever since my HIPEC/hot chemo treatment.  I will purchase a nice pink wig with bangs, but I really like my eyebrows.   And please don’t let me get down to 90 pounds again, because I already gave away all of my “emaciated clothing” to The Salvation Army.  Again, please bless my family and Tom.  Thank you.”

After several ridiculous prayers and many dollars later, I left the church and walked the death march to the dentist.  I love my dentist, he is the best.  He assured me that although the bottom of my mouth was larger than most people’s, there was nothing to be worried about.  But, he said it was totally normal that with a large-bottomed mouth like mine I might think there was a problem (bless his heart!).  Oh the Joy I felt upon hearing that my cancer had not spread to my mouth!  I practically danced all the way home and then passed out exhausted on my bed, dreaming of pink wigs and saints and perfect mouths.

 

Don’t Stepford Wife Me

 

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You know that expression that God only gives you as much as he thinks you can handle? Well, I think it’s a ridiculous expression.  But on the off chance that it’s true, then God must think I am one hardcore broad.  Because in addition to dealing with Mesothelioma, (special thanks to Asbestos for giving me this lovely cancer), I also have a Brain Aneurysm to deal with.  Fuckety Fuck Fuck.

On days when I am feeling “oh the glass is so very beautifully half full!” I feel extremely lucky that my brain aneurysm was found.  Most people don’t even know they have one and then one day they’re walking to the 7-Eleven and – pouf! – they die on the spot.  But my brain aneurysm was discovered while I was being treated for Peritoneal Mesothelioma.  I forget exactly why they were scanning my head – that whole time in the hospital is a bit of a blur – but they basically stumbled upon it.  When my Oncologist told me I was like “ok, whatever!” because I had more pressing issues at the time.  But now I’m worried.

On May 18th I  go back to the hospital – cue the scary music – to get my aneurysm “coiled.”  Basically the surgeon packs the aneurysm with platinum coils which prevents it from bursting.  Luckily they don’t have to open up my head lobotomy style – thank you Jesus!  Instead they weave a small catheter from my groin all the way up to my brain.  Is it just me, or does that seem like something that you would see on The X-Files?  I have decided to think of the platinum in my brain as an alternative engagement ring from my partner.  Instead of wearing platinum on my finger I am wearing it in my brain.

Intellectually I understand what the operation involves and I trust my amazing Neurologist.  But I also have an irrational fear that I will wake up from this operation a changed woman, that I will be turned into some weird Stepford Wife. I will go from a tchotke, sparkle loving collector, to a Plain Jane Minimalist.  Or worse, all the things that make me “me” – my many neuroses, my belief that I was a showtune singing Broadway star in a former life, my rule about never leaving the house without lipstick on – will vanish and I will become someone different.  I realize that it’s a ridiculous fear, but there is just something about messing around with my brain that freaks me out.  It feels like I am about to enter an old episode of The Twilight Zone.  Stay Tuned.