By the time Liza and I got home from our marsupial moment we were wax versions of Gretchen and Penelope oozing out onto the driveway leaving a mirage of ourselves in every step. I dripped to the house and up to top of the stairs desperately trying to free myself from my clothing on the way. Stairs and undressing are a bad combo. . Memories of the pool. My hair was again stuck in my shirt and my pant leg with twisted back around my kneecaps
"Help!! Air! "Liza found me splayed on foyer flailing. Mostly gasping.
Liza was of quick help peeling me out of my sticky ensemble as she was raised in the spit on the wash cloth wipe your face - the band aid off with the scab- zip hoods into chins and if it doesn't fit use a hanger or a stapler school of dressing. So she snapped my shirt off and did that groovey one hand bra snap. Snaps ndeed! Free free at last!!
But three was more than one snap. Both our heads spun to look at poor Ethyl.
Wow. Not right at all.
Lumpy. White hard swollen pulled so tight. I could see - Peter Paul and Mary really were killing her.. She was so sweaty and I think possibly crying. I know I was. I gently coaxed her from trying to hide in my belly button. We turned to snuggle into Liza.
"Ew. Get off of me. You smell like boobie cheese!""
She waddled us into the shower and walked away. I think mine and Ethyl's tears were louder than the spray. Myrtle slipped into my armpit to give Ethyl and I little one on one time with the poof and the Irish Spring. That and I think she was embarrassed that I was still wearing pants. I turned to look in the mirror something I do quite often. Not as a habit of vanity but one of self talk.
My mother allways said " No matter where you go - there you are. Now look at yourself and love yourself. Just the way you are. I do"
I could't help but sob. And laugh. And sob. I am a mess. We are a mess. I made a giant soap bubble nose for myself and pasties for the girls. I put the pouf on my head pulled my wet pants up mom style and stuck the girls nipple to nipple on the steamed glass shower stall. Ta das!
"Well mom. Here I am. One cancer ridden clown!"
Ethyl pried her face off of Myrtle spat off the bubbles and in a rare moment spoke. ( she usually sings broadway Merman style )
"Ummm before you go completely off the rails - and before I get hacked off - do you think I could have a picture. A proper picture - because if this is my last memory of myself - a lot more than sun shine and roses are going to be coming up.. and perhaps out your nose."
I wiped away the soap and the snot.
"As you wish Ethy. I will get Liza to call Suzi. Right now I have to get my pants off and the soap out of my eye. - and maybe call my therapist. Or a circus."
"Ummmm Kelly? Stop talking. Even Myrtle - who by the way is turning blue - thinks you should."
" Yes. Of course."
Always listen to your boobs before you become one.
Once one has come to terms with the enevitable loss of a body part the next step is much like rebounding from a bad break up. You go shopping for a new one. And thankfully Vegas was good to us. Not only did I get smancy new sneaker set for the hospital but I had a large chunk of change for my ' new' Ethyl.
But where does one - in a slightly small town go to find a rather large boob - other than a strip joint or used car lot? Pretty simple. There is only one mastecotomy shop to choose from. So you go there or back to grade 6 and stick socks in your bra.
So we jump in the Porsche because for the first time all summer it is actually summer - not sprinter or sprummer real hot. Actually too hot. Yes Vegas is hot - but they cool the air inside and out. As in you have to wear pants. Maybe even a light sweater. We kinda forgot that and were a tad overdressed. Like two house salads in a retirement home with moist lettuce and 100 000 table spoons of dressing. One with 1000 islands and one with that orange kind. I was the orange one. And not all cool like orange is the new black. That was Bea.
Bea runs the boobateria and is as intimidating as Red but in the absolute total opposite way. Of those 100 angels I mentioned - she is in the top ten. That and she knows everything about boobs! My hero.
I was already sweaty from the car ride and now was even more nervous because Bea is a hugger and as we climbed the stairs to the secret room of requiremt the air beacame as still and hot as goat gas in a mountain cave.
"So you are here for a boobie?" Asks Bea in her fabulous mysterious eastern real European accent. ( it took Penelope everything she had to be quiet but the heat was melting all sense and sensibility)
"Ahh yes" said both Penny and I sounding more like Bob's burger does Laverne and Shirley. "Yes. I am going to need one and perhaps a special bra for when I have the surgery and I have this drain thing..." and on I rambled until Bea said.
"shh. I show you. I know your sizes." She glanced at Liza. Nailed it. Liza was agast. " I go to beaches with my husband. I know all sizes. From little baby b to big triple e. All wowmn are beautiful in all sizes. You will be beautiful too. Just like you are now. "
She looked me up and down thankfully missing - or ignoring he tears welling up in my eyes. Fear and kindness make my face leak. Both were walking all over my brow- rather slithering in my gaping pores.
She rose and strode to a rack of bras. Like 200. Victoria may have secrets but Bea has top secrets. The best ever. She collected a handful of soft sexy and yet very purposeful - oh god. Lingere.
Panic. More perspiration. I have only ever worn a sports bra. Except once in a play. Disaster. How do these even do up? That thing is not gonna hold up Myrtle.
Who by the way was checking out the potential Ethyl replacements sitting oddly in a box to my right. Ethyl? No worries. She thinks we are still in Vegas. She does not freak out until later.
Bea catches all three of us - staring at the giant boobies in a box. The bras land on the desk. Bea is delighted.
"You can choose your nipple too. Look" she grabs the boob from the box and essentially tosses it at me. There was a thump behind me which might have been Liza fainting but I was too busy feeling up myself to compare the fake boob to Myrtle. Woa.
OMG. It feels the same!!! I was far far too enthusiastic. In a second the back of the foobie had been peeled off to reveal zillions of little suction cups and Bea slapped it on my skinny clammy little arm.
I tried to shake it off. I turned and flung my arm at Liza who was a colour I have never seen before. Kinda a crimson winter wheat with a side of bleached blotchy violet. Uh oh. I spun around.
"Holy crap! This sucker is not coming off!!" I was on my feet now - flailing -visualizing myself skiing and swimming with my new invincible Ethy. I was so losing my grip on realty.
"AND!" says Bea we have them in every size. You are 11 let me show you 22!!"
Another thump. This one I saw. It was like a ginormous naked sea turtle had jumped a wave and died on her desk. Ethy and Myrtle seemed so - well. Teeny. All was still. Goat gas had steamed the windows. I just stared and thought of my Mom.
Now I understand why a 22 gauge double barrel shot gun blows your shoulder off. And now I know why my Mom had deep dents in her bones. Point made. I sat down. Deep breath. Bea took off the foobie with some groovey twist.
"But before this you need these." She handed me the beige pile of lady things.
I rose again but this time the perspiration and shame had pooled in my pants. My beige lady pants. Oh god. I was soaked. Stuck to myself with a nasty Hanes no ones way wedge. I manoeuvred to the change room.
I could here Lizchatting as I attempted to ooze myself out of my shirt and bra. The girls were molten wine gums. I wrestled them into a new bra. Wow. Comfy. Perky. Stable.
"Uh all is good. This one works. But what are theselooking down inside the bra.
"Those are the spots for your drains. You will have a tube that pulls the fluid out of your nodes and it will collect in the little balls." Yes. I lost it. Little balls. Giggles.
Bea tossedr another garmentr over the door.
"You will need this too. This is a surgical corset to support your Myrtle ( she was listening ) an lpin your drain and put the ball in the pouches."
I was a little light headed as I took off the bra and began to stuff myself into the thick full front zip iron maiden corset from hell. I was beyond stuck. My arm was pinned under Ethyl and I zipped my finger into something made of Velcro. I figured I had about a minute or two of air left in the change room. I was wrong. I was almost unconscious when I flung open the door with my chin completely unable to free myself from the straight jacket I had tied myself in. As I stepped forward I lost my balance and began hopping to find my feet.
My head was out the right arm and my hair was tangled in a clasp. Both arms were now twisted and clearly I had it on inside out. I knew this because when I looked down the pouches were on the outside.
Bea was hysterically silent laughing. Liza was was hysterically silent staring.
I got my feet up under me and snapped upright in one last pathetic sweaty hop.
"LOOK LIza!" I panted as I motioned to my dangling pouches " I am a marsupial!!"
Bea collapsed into her chair. None of us had a shred of mascara left. Liza took out her wallet.
"Write her up Bea. "And make it two. If cancer does not kill her maybe this will."
"Let's Begin." says the surgeon.
Says the Dr. The very nervous Dr. The pale DR. dressed all in black that is going to tell us what the MRI has decided. The kind eyed shaky handed Dr. that we have never met before. The DR. who is standing in the doorway looking back and forth to each of us.. totally confused - who gently ask us - with the voice of an angel -
"Which one of you is Kelly?"
Well that blew that prank.
Liza and I got the call to come to the Doctor's office just 48 hours after the fabulous MRI surfing experience. Panic. Quick news is bad news. My chest plate had joined Ethyl in mutual bruising and I was still a one side only Pam Anderson special. It had been a long 30 days since the fateful pool incident. Naturally we were and still are - a bit wound up. Keliza style. Which means to cope with terror - we turn into a gay version of Patsy and Eddie - in our world Penelope and Gretchen.
So we - P and G are sitting in the Dr.s office laughing and joking and posing for pics. I am Penelope. I have a trashy Euro accent. Gretchen is slightly Parisian and totally creepy.
"Ohhhhhmm Penelope - let me look in your ear - on my i can see right thru - no Kansaire in there. "
"Gretchen dahrlink - please put those dirty dirty little things down - and hop up on the table - ohh look gloves - small medium and no chance of a pap smear with those ! Egads - they are huuumungeous!! " SNAP
"Ohhhhhhhmmm Penelope - you are sick - " " i know Gretch Gretchy that 's why we are here."
" Muahhahahhahahah!! laughter as G and P plot to role play Kelly as Liza and Liza as kelly. Why we thought this would be funny was beyond comprehension. But i guess it was Liza's way of saying please let it be me and not you. And my way of having a condo over looking denial.
"Here darling sit up there and look sickly - worse worse yes yes can you tear up a bit? - maybe chew your hand?" OH Yes good idea Penelope - i will sit here looking all concerned and conventional. Pass me those glasses. Oh dear she is blind and has cancer how sad."
Enter the Dr. Exit P and G. Enter reality.
" I am. This is my partner Liza. " I am ashamed of myself as i make an effort to explain what we were plotting and apologize profusely to the Dr. for being essentially an - intensive dork.
We go over the pages and pages of results. It is bad. It is official. I have cancer. Three kinds - three spots - grade three - three options. I continue to try and sooth the Dr. who is still shaken - I ask her how she is - " This must be hard to tell someone you have just met this news." I got a very strange look and a raised eyebrow.
" Why Kelly, are you being so nice to me? What is it you do you do? You are being so brave.."
"Well Dr. You are telling me something i already know. I have had lots of time to prepare. You have not .That and i work with kids, and sometimes no matter is happening in my head or world, it has to be 100% about trying to help them - right now this is like that - it not about me - this is about us. All of us ( with a wink) Even Gretchen and Penelope."
The Dr. just shook her head, smiled and asked if i was going to be ok? "
My answer was, is and always the this - i looked up at Liza -
"I have to be."
Waiting. I suspect neurotypical people wait. A lot. I suspect they do if for years on end. If I googled it - I am gonna guess about 3 to 4 years depending on where you live and whether or not you drive on the Don Valley Parking lot. Or take the TTC. Otherwise known as tedious and time consuming - or Take the Car -which could put you on Lake snore Boulevard. Driving is crazy making. Driving in Toronto is just crazy.
My ADHD brain just not get the concept of simply waiting. Although once about 24 years ago I came really close. Really close to getting myself tossed out a window onto the street. Really close to getting my socks stuffed into my mouth by my classmates. And really, really, really close to giving my acting class professor an aneurism. ( not that you can give them out but if I could I do have a short list)
The lesson - which I have since stolen and adapted was to learn about being in the moment. To be present and accepting - not just stand there and wait for your turn to say a line. This of course was super obvious to my brain - I have always said to myself and others -
"Where are you? HERE. What time is it? NOW. Does anything else matter? NO."
So as my brilliant teacher ( not sarcasm) was explaining the concept of the moment I had a rather smug look on my face. Apparently too smug. So I was selected to go sit on a painfully solid wood chair placed in the middle of the room. No reason no words just gestures to get to me to go sit. Silence. More silence. Fascinating. Soooooo interesting. I could not stop smiling. The entire class was just sitting there. Staring at me. Bliss. The committee had a big meeting in my head. So much to think about and all the space in the universe to imagine, play, plot, plan, dream, which I do both asleep and awake.
Then the Prof said - and I have no idea of how much time had passed - as I do not get time - in a hushed tone - " Ok - let me know when you know what you are doing."
I brought my attention as best I could to focus on the faces of my classmates. Woa. Nasty. Now mind you this was Trent in the 90's. Purple might have been the official colour of things feminist and lesboinc but I was not expecting so many faces to be bubbling purple. There was one gal who looked positively Elizabtheanly Talyorish.
Two hours. Two hours had passed. Two hours had passed since he asked the weird question. This I noted by the clock tower. Which I think many people in the room were about to go. I was so taken aback. How had I missed all this frustration and anger?
" What?" I asked - shattering the silence like flatulence at a funeral.
" Well Kelly - do you know what you are doing?" "Nope." - pretty sure I had no chance of explaining myself. Pretty sure I had just sucked two hours of peoples life away. Pretty sure I should just drop the class and run. I scanned for my shoes then said - very quietly through burning salty tears of shame -
"I am just sitting here. Being myself." My Prof walked up to my hanging head and lifted my chin. He looked me right in the eye - right thru to the back of my swirling head.
"Exactly." He said still in that hushed tone. "You were the only one not waiting."
- So please, don't wait. Don't wait to live, Don't wait to die. Don't wait for an absolution that will never come. (Titanic) find your moment and be in it.
Oh look a chicken.
Saying an MRI machine is a little loud to a person with ADHD is akin to suggesting to a toddler that a Bhut Jolokia pepper is a little hot.
Asking me if i am claustrophobic right before stuffing me into a giant ceramic bic pen is mean.
Wrapping a tube around my arm until both my eyes and veins pop out is just trying too hard.
Standing with your arms crossed staring at a girl who is darn near unconscious with fear is simply rude.
Having to lie face down arms extended like a flying super idiot - boobs dangling with all your weight on your breast plate five days after a nasty biopsy is an episode of Survivor 31: The Health Care System. You put a 127 pounds on 6 popsicle sticks and see what happens. Ya pass out.
However, For the most part most people find an MRI ok. For me it was a nightmare. In fact i still have nightmares. Like the ones i have from watching the last episode of MASH. Bloody Chickens…
In my mind i had the MRI all figured out. I asked people. Oh relax, they give you music to listen to. It's easy. It's just a little loud.
Loud like an air raid siren. Loud like the radio I was listening to. Which turned out to be a live CBC report on the conflict in Gaza. Even with the earplugs I could hear gun fire and people screaming. I could also hear the very nice but frustrated tech team telling me to stay still. I think I lasted about a minute before my arms started to go numb. Then shake uncontrollably. By the ten minute marker I was unable to breathe from the weight on my chest. As I had crawled into the thing they added a super comfy thin rubber pillow - like one you might find in discount casket - under my knees to get an extra dangle angle for Ethyl. The only thing full of air was my head. I could hear more and more voices.. There was a committee meeting of panic happening. My heart started keeping sync with the beeps.
"Just keep swimming" said one voice.... "42 walla bye bye zzzzzzzzzzz.
Then just one voice was talking to me. A very familiar one. A very clear one.
"Kelly Dear ( said with 3 l's) - you keep still or you will have to do it all over again. YOU BE STILL NOW. Do not screw this up. You can do this. "
and so I did. Like I said. There is no arguing with Liza. And there can be no can't in cancer.
There may be some swelling she said. Oh and some bruising. And it will hurt more the second day. Truer words were never said. Thank goodness Liza had arranged baby sitters. Surprise babysistah's.
I stirred from under my pillow fortress to find Liza dressed for work and hovering at the end of the bed holding a tube in her hand - Looking very serious...
"Wake up .You have to get up. Cdubs and Muffin are on their way. Hurry they will be in here in 30 minutes. And you have to shower your hair is on sideways. And yes you are allowed to shower and you can swim today too. but first this" I was half asleep and so very very confused.
"Yes to cover the steri strips now sit up and hurry up!"
Do we have a cat?
"Yes. in an urn in the closet. Why?"
Because there is fur on my tongue.
"Kelly Dear sit up now and take off your shirt before i saran your head."
But I - eeeeyowww!!
Arguing with Liza is pointless. She reaches into your brain and you end up arguing with yourself. Kinda like how a certain champagne sipping auctioneer i know gets me to bid against myself. Awesome another 300 dollar gift basket to never re-gift. Not doing as Liza says is also pointless. It is hard on both your ears and your self-esteem. Kinda like listening to the clerk at Bikini Village tell you 'But it is an extra large top' as your nipples surf out over it. Awesome another day swimming in six bathing suits and a T-shirt.
"OMG" says Liza as i finally sit up and peel off my sweat soaked t-shirt."Ethyl is black. You look like an Oreo and a Floatie had a baby." She peeled off another foot of saran wrap and embalmed Ethyl. "No time for a shower - just get your b-suits on and go downstairs-the girls are here."
"Yay gay people!!"
And indeed they were. Dressed in different but identical short and t-shirt combos, sensible shoes, short cropped hair do's perfectly styled, all shiney nosed from sunblock
and staring at me like i was a car accident.
Now to put the following exchange in context - we have been friends on and off for well over 20 years. Sometimes really off and now thankfully - more on than ever.
"You look like shit. "I feel like shit."
"Why are you so pale?" "I probably have cancer"
"Why are you so pale?" " I already had skin cancer"
"Oh that sucks." - pause - " i think this might suck more"
Now please picture an episode of Ellen that has something to do with dead puppies, lost kittens, and the guest is Celine Dion. Keep imagining. Bette Midler makes a guest appearance and sings wind beneath my wings.
"Girls. Enough. ( said with 3 E's) Stop crying. Open the Veuve and get in the pool."
"Finally Kelly, someone who gets you."
"Yes" i said meekly. "Kinda like you guys do."
After taking deep breaths it is very important to exhale. Otherwise you faint. Fainting while ones' Myrtle is face down getting her round two up close glamour shots in essentially a glass fish tank is slightly painful. Kinda like closing the sun roof on just one hair and trying to jump out of the car. One should never hang from ones Myrtle even if it is just for a quick blurr of the room.
Thankfully, The girls were back in the kind but chilly hands of the same fabulous technician who had taken my first round images and she got me back to blinking. She also got me back on my feet to face what was coming next... but having her help me this day was not by chance...
Small towns have many disadvantages, but small towns with pubs solve most of those.
After what we are calling round one, Liza and I went to our local living room to make what I call bad choices.
"Big girl or little girl?" code for how much wine I am planning on drinking. I chose little girl but by the time I had told my tale I had emptied one for each of girls in Facts of Life - with two for Blair because that is the only way handle that beeotch - and I had an ally. A super nice ally. A super nice connected ally who would help us prep for round two. -and line up the same gal to do them. After all, we'd been to second base together and like most players on my team I am a serial monogamist. That and I really did not want scrape off my shoes again.
Guitar picks and sea monkeys require excessive scientific experiments. Excessive scientific experiments like enhanced images, ultra sounds and biopsies take time to arrange. Thank god I have adhd. I do not understand time. I just know that stuff happens and the weather changes.
19 days - we waited.
Lotsa stuff happened but the weather didn't change. It was still crappy.
So on their round two call back Ethyl and Myrtle were greeted by name at the desk. I was handed a paperbag with a whole big girl in it called Lucky Stones, a lovely card, and Twins named Stella. Crying at 9am in public takes getting used to. So does hugging. And letting people care for you. But I am trying.
So this time I rocked the waiting room, sporting super gay wonder woman converse, a big grin and properly fitting gown. What I didn't rock was the close ups.
Peter, Paul and Scary Mary were huge. It was 1977 big screen Star Wars. There was the Millennium Falcon front and center surrounded by space cancer. My breath went into hyper drive. I was heaving and my little heart was having a Tiesto dance party. I was not running red lights but I was seeing them.
My super Tech peeled me off the plates. Who knew boobs could sweat so much? She was telling me a great story about her kid and how cool they were... which helped put me back together.
Super Tech helped me into the gown, " Here, you put it on like a coat" and walked me out to the waiting room. I was sheet white, sore and scared. She patted me on the back - and told Liza to take me for a drink.
"Do you mind if I change first." I asked. " I may have peed my pants."
Super Tech laughed. Liza rolled her eyes.
"Seriously, go for a glass of wine and bring her back in a hour- but just a little girl"
I got called into the inner chamber of boob doom next. It was dimly lit and housed what I can vaguely describe as a humongous 1954 white and glass wringer washer, two chairs and a crooked bulletin board.
Then we both laughed our guts out and spent the next 20 minutes making pancakes, panini's and smores out of my breasts.
Not just for kids anymore the joys and pains, trial and tribulation of having a non neurotypical existence can be shared by millions.
Except very few adults want to talk about it let alone admit they have it. Very few employers understand how to deal with it. Many health care practitioners don't know much about it - and sadly the majority of everyday people have no idea how to connect with and stay connected to people who have it. But we need you. I need you.
I feel I have to talk about it -
because it is me.
If you google it you will find a variety of definitions - explanations - ads for medication - lists of famous people - books about how to get organized if you have it - and so on - and on and on -
So if you like, go do that and when you have your ideas about it - come back and visit.
Then we can all talk.