Oregon

“I’m an American Citizen! I’m going to Oregon where I can die with dignity, it’s legal there. You can’t stop me.” That’s what I was thinking when my oncologist told me that I was bleeding internally and that he would have to open my abdomen again. Are you fucking kidding me?! No, no, no! I was over this crap. Over the pain. Over being butchered. Over my drug-induced delusions, which of course I didn’t understand were delusions. There were people watching me – they were standing behind a curtain and staring at me and no one cared!

Needless to say my plan to sneak off to Oregon to die with dignity did not pan out. Instead I was sliced open again, only this time when they sewed me back up it felt much tighter. Is this how it feels when women get their vaginas “re-juvenated?” No, this must be what it felt like to wear a Victorian-era corset. No wonder those poor ladies were always fainting, they couldn’t breathe! And those damn people were now laughing at me. They were behind a red velvet curtain, but I saw them. They were laughing because I was having trouble breathing. They could see my corset. They were chanting: “tighter, tighter, tighter, tie that corset tighter!”

Later, having forgotten about Oregon and my corset, I became fixated on my nurses. They were obviously part of some reality TV show and they were filming me, using me. Every medical professional who I could see – and there seemed to be so many of them – were in on it. Ha! But they didn’t know that I knew. I was determined to play it cool as a cucumber. I would fake them out, just like they were trying to fake me out. So I lay there, sweating through my robe, secretly watching their every move. “I wonder which network this reality show is on?” I thought to myself.

I asked for a clipboard. I had seen one of the reality TV nurses with a clipboard and I wanted one too. I also got paper and a pencil. I started writing out a very important fax. Who sends faxes anymore? But this fax meant everything to me and soon I forgot about the reality TV show, though the people behind the red velvet curtain remained. Bastards.

The fax was no longer of importance to me, now it was the “crowdsourcing in my brain.” I couldn’t sleep one wink because they were crowdsourcing in my brain. My partner visited me and I anxiously told him about the crowdsourcing and how it was keeping me from sleeping. He didn’t understand. What the hell was wrong with him?! Crowdsourcing was dangerous. It was like Scientology mixed with evil wizards and they had control of my brain and through my brain they had control of the whole world! Why couldn’t he understand how dangerous this was?

Then my partner told me that there was no one watching me; what a horrible lie. What a despicable man to lie to me like that. Of course there were people watching me, they were right next to me, behind the red velvet curtain. I simply couldn’t trust anyone anymore – not my partner, not the nurses, not my oncologist. I would have to pretend that everything was fine. I would have to give an Oscar winning performance, so as not to let anyone in the hospital know that I was ON TO THEM.

 

 

 

 

 

 

 

Dolls

Tonight I’m off to get an MRI and MRA to check on the status of my brain aneurysm – whoop!  One year ago a surgeon filled my brain with platinum, (the procedure is called “coiling”), in order to keep my aneurysm from bursting – eek!  I was actually very lucky because when I was in the hospital for cancer treatment my doctors accidentally stumbled upon my aneurysm while scanning my body.  Who said cancer doesn’t have a silver lining?!

I always come prepared to these scans with a pocketful of pills.  Lying in an enclosed, small space for 45 minutes while the MRI machine pounds you with loud noises – which sound like punk rock combined with power tools – is not ideal for anxious types like myself.  Six months ago at my last brain scan, several poor souls in the waiting room started to freak out with nervousness.  The nurse told them that they should have asked their doctors for a sedative before coming to their appointment – nice!  I was tempted to share my stash with them, but since I’m not completely insane I didn’t.  Personally I think the waiting room should come equipped with a Chill Pill dispenser.  The pills, or “dolls” as I like to call them (watch  “Valley of The Dolls” if you haven’t already), could be kept in this fabulous canister by Jonathan Adler:

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To shop his whole selection:

http://www.jonathanadler.com/pottery/by-category/boxes-and-canisters

 

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

 

 

 

 

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

 

 

 

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

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Photo from blog.TO.com

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.