Day one of chemo must be akin to day one of kindergarten. Chaos. Tears. Pee.
And a lunch box.
After my many hours of liquid intake and the absorption of little octagonal pills that made me feel like chewing lead paint off church railings - steroids - to give me strength - and likely back hair - thank goodness that will likely fall out - I was ready to be sent home on the - well - very nice Lincoln short bus.
But not before I got my little blue refrigerated bag tossed onto my lap by the charge nurse. With a giant nasty needle in it. Oh yea that. It has to be injected 24 hours after your infusion. Super fun. Off to the walk in clinic for that.
Ahh. Too cute. It has my name on it.
I was quickly unplugged uplifted loaded up with instructions which frankly had Liza not been there would have pinned to my chest and scene. Done.
We wil call you with your next chair time in leas than two weeks.
Ok. Lol. Call me! Maybe! Cause I just met you and this Is crazy ----- wow I love steroids ! So high. So very fuzzy...
I wonder what this needle is going to be like.... And off I slept as Liza wrangled home and me up the stairs so I could rest.
And then begin to eat.
"If you do not eat you die."
" Define eat" I said.
"Micheal Phelps" she said.
Oh thank goodness i love pizza.
Mamma Mia's!!! I love you.
So I was finally and thankfully walked about and seated off to the left - how fitting - off to left of the main room. Clearly I was a fright to the others. And I was right where the charge nurse - and by that I mean in charge nurse - could watch.my quivering self succumb to to the confines of the giant pleather chair. Like a 1972 lazy boy un gendered to a one size fits everyone. Ahhh. Everyone indeed. As it seems no one escapes this ....
!!! Hurry the judges are coming ! They will want a urine sample!
Because I am I competing in what sport? The game of life ? Yes. I cheated and put two blue pegs in my car going nowhere fast...
I .. Began to note that I was hooked up to all sorts of things that beeped and beeped - then in the patting and then in the swirl - the white bees came.
No Scoobie Drool....
As i have said ( or i least i think i did) one of my my fav parts of the clinic is the random catwalk overlooking the super sad lobby. Which for me was transformed by my quick visit with my OPH's
( own personal hero's - which by the way you should become one.)
Liza was appalled that i was (i think) again singing ' On the Cat Walk' - badly - and moonwalking - while waving to the nearly dead - the not dead and the soon to be dead… thankfully like the local cable TV station included in your likely overpriced package - no one was watching...
Whew. i am rarely invisible. A quiet pause. Then my name was called by such a kind faced - but let's get this done nurse - - - and my attitude - fuelled as it was by my quick chat in the lobby --- and my amazing cheerios filled gratitude journey was waning…. fading into… a happy but nervous place full of purple - yellow and blue - people? Fictional but powerful OPH's - my mind was speeding backwards and i was very confused….
25 years of residual angst --- my Mom…her pain…her courage…her death…my death…? These thoughts overtook me and my fear - my pain - was inching into my bones and crawling up my spine...
Crawling up your shins the way socks do when you are on a transatlantic flight - Suffocating your feet and clenching your calves so your toes throb Enter the Evil thoughts that have been walking about your mind for decades - all uninvited - scraping their well heeled muddy stained boots on your welcome ( whatever will be will be ) mat - Then doubt - Edging up in stealthy silent creep - as nasty cats - do before they back up - pose and pee all over your front door… leaves you feeling -
Well - that senseless fear that you plucked one eyebrow too high and now look speechless perplexed - the fear that makes you feel feel feel feel about five five five yrs old - and that becomes the only touchstone you have… and you wish you were once the remote again - so your Dad would say -
"Get up and change that channel mouse - let's find something fun!"
But there is no Dad - you have to change your own channel
Thus at five feet into the chemo room - with Liza and the nurse five feet ahead and disappearing quickly into the beep beep beep - fries are up - cafeteria of chemical infusions - i snapped the dial and the muppets hankfully - arrived to save the day.
Good things also come in three's.
As i was stalling - marching in place - i just kept saying "Nope Nope Nope" The familiar bodiless brown fur bags - That say 'Yup Yup Yup' - jumped onto my chemo doorstep - with all their curiosity - ran right into my racing pacing mind - and tuned me back into the kid who has no fear - and loves loves loves - life.
Let's get his done indeed.
So this is chemo day one. i have gotten up dressed and am sitting on the couch beside my hound. I am really eating cereal. My chair time as they call it - is for 1 pm. I am counting cheerios - they really do float together if there are just two.
Liza coaxes me into the car and with a fresh pink chemo pass on the dash we head for the first dip - the first prick - into - well i have no idea…. but i have other ideas….
And i have thoughts. None of which are all that positive - ( kelly turn it around)
BUT i am trying to stay sooo positive - just stay positive - just stay open - (i am tweeting myself.)
We enter the clinic - turn a quick left and we hear a weak but powerful - "Hello Kelly Dear!"
And there are two of my most cherished role models - brilliant and forward thinking humans - two people who stood beside me - quietly - in the dark times - two people who have just fought cancer as a team - two people not expecting to see me -
as i was not expecting to see them on their last day of treatment - They did it I HAVE to do it.
So i had to be upbeat - i had to be positive - they believed in me - and i in them - what a gift - So
Off I went into stand up panic mode -" ha ha ha" - (Liza save me from myself)
Liza let us joke about for a bit - but then she gently guided me towards the far left exit with the stairs.
There would be no elevators for me. Not today not ever. I promised myself if i could - i would always take the stairs.
As my Momma taught me - so so many years ago - the high road is always - a bit darker - a bit more lonely - sometimes longer - always steeper - but when you get to the top -
"KM the view of yourself you get is always worth it. "
- It has - i am quite sure - been confusing to follow this blog . Confusing to follow the style in which i write - so too to hear the the voices in which i write - or at least attempt to. Also the dates are out of pace with the real time line of my experiences - but then again so i am. Trying to be in the moment these past 18 months and then write about them has been nearly impossible. Yes i said nearly - as i fully believe anything is possible…. and i have a friend who is my proof… and when i looked in the mirror today - i was my own proof...
To say ( read admit) i was afraid - fearful - of starting perhaps one of the most aggressive chemo regimes there is would be like asking if Liberace liked sequins or does Nickleback actually suck…. or maybe even an understatement like "Tina Fey ya she is amusing…sorta…but not like hosting SNL funny…."
You see - i had not - or at least had not prior to the rather dramatic change in my career path - ever experienced being a fearful person. Prone to some anxiety yes - but not agoraphobic or a panicked mess of rattly nail biting bones cowering in the corner too scared and scarred to even walk to the block. But i faced that head on with as much dignity as i could muster and i survived - thirved actually.
But this fear felt so different. This was deep purply fear. Something misty and unseen that had silently seeped thru my skin and was now pumping through my veins swelling them to the point where they were hanging out of my hand like bulging blue worms writhing in pale April mud.
Which on a positive note made having my blood taken the day before i started pretty simple. I basically had an inner elbow stigmata. They just waved the needle and the vials over my arm and as the bile in my stomach filled my mouth - they unleashed the tube and viola! 3 barrels full.
I had to sit for 10 minutes afterwards. They had never seen anyone hit the ceiling before.
However my Texas Tea style blood pressure and sheer inner pandamonium did not make the appointment with my ( our) oncologist quite so simple.
It began with me bargaining with my care team - asking if i could just wait two weeks to get my stick on the ice - ( ya cause this lesbian plays hockey - ya that's a no.) and then i would be in a better headspace ( ya that's a bigger no.) I was pathetic. I was wimping out trying to postpone tomorrow to never.
Dr. P was having none of this. Nor was the nurse. Nor was Liza. She too was afraid - ( I cannot imagine how i would would feel if our roles were switched ) - But she is so bloody indescribably tough.
So you can guess how that conversation ended.
" Thanks Dr. P. We will be here tomorrow ." i slinked out the door and down the stairs, my self esteem toppling over my feet, over my head, my yellow spine collapsing in on itself step after step unit we got to the parking lot.
" Kelly get in the Jeep." Liza pried open the door for me and offered a hand. "And try not to escape out the heat vent again. Your hair clogs the climate system. " ( images of things to come)
"Yes of course. " I stubbornly pulled myself into the Jeep and said " Best put the child locks on."
i smiled weakly knowing full well they were already on "Or i may take a go at the window."
"You Kelly - will do what you want to do. You always have - you always will."
……………………………………………………….awkward longgg pause…………………………………………………………...
"Mmm…Liza do you think i should wear black tomorrow - or…..."
Liza promptly leaned over, dialed up the music and offered her hand - again - this time with a look.
This time i got it.
I stopped talking - accepted her hand - now knowing full well that we were both - scared - both filled with fear - but most importantly - knowing that we were both -
in it to win it.
the band played on and on and then anon i was summoned by four non blondes … asking such a simple question… which has such a simple responseRead Now
Not enough… and yet so much….
I have always pondered why we funrasie - oh sorry funD raise for cancer as it seems to be doing just fine on it's own. Fundraising for a tax receipt i get… cibc is not much different than cnib… except that one likely makes a profit and the other hopefully a difference. (Suddenly singing Carole King in my head)
As i walked the room and became more relaxed - good music does that to one's soul if you let it - as does giving in to the moment, and allowing what is happening to just happen even if it is just a moment's pleasure -
Kelly. Self talk again. "BE present. The tapestry in this room is home woven. Listen."
And so i began to roam - as goats do - the room - to find a place where i could see and hear the band - which i soon realized was not home grown but an eclectic mix of artists from many cities and many places, somehow sewn together in this …. this incredible temporary translucent fabric that cloaked us all from all that is October...
and all of whom had a different sound and voice….and as i was taught by so many of my students - to listen - to really hear -
if we all have the same voice - there is no harmony -
The all ages and stages ( kinston pun intended) of life in the room, from seven to seventy - from straight to wait - i do not know yet - from walk to run - from been there done that - not yet but i will - had all found a thread. We were seaminly connected.
However the grasp i had on the corner of my comfy cabernet quilt quickly unravelled all over hell's half acre - when i saw - way over yonder - and then heard one of my mother's most cherished and beloved friends - call out my name.. and my brain recited - i 'll come running to see you again… The earth did not move under my feet - but my feet sure hustled - suddenly i had four of them - three left - and i was a sprinting spastic kitten - entangled in ball of my own life long wool.
Red wool. LIke my mom used to to try and make me mittens with. Itchy wool - the kind that makes your skin itch and your eyes burn.
Mine flooded with tears. What sense of the floor i had worked earlier faded beneath me and i floated into her arms as if i was still the 23 year kid who found her so many years ago feet up - on the hospital bed - reading gently to my mother - who had but days to live - ' Do not go gently into that dark night...'
is what i have imagined she was reading… as i replay and loop that in my head - but i do not know as i stopped in the hospital hallway, hid and slid down the wall around the corner from her room - i tried to listen but i did not know how…the sounds of my sadness, my rib racking sobs suppressed the sounds of their soulful friendship and thus i slipped away - ashamed i had not broken my own spine - and carried the burden of that memory -
Until this night
When my flushed face spewed the story and smeared it thru mascara with the grace of a wet inked tabloid tossed in the middle of a rain soaked street - right in the middle of a fabulous frenzied final set - right in the middle of Mary Anne stuffing a bouquet of flowers the size of " i cannot see you" - in the middle of me pleading - please - "Will you read to me if i'm dying? " and smack dab in the muddle of me being called by Jenica to the stage… for… called to the stage?
"Hey - I said Hey!? What's going on??"
Wipe your eyes - pass off the bouquet. Fix your jacket. Adjust your scarf. Kelly you know exactly what is going on…. 4 non blondes.. 25 years… a great big hill …. a revolution ….. a curtain call - a swan song and indeed you've got a friend.
Jenica being the class act she always is - had the band play one of my favourite songs - since ever - which i always ask for - and heckle for - but this time i did not get to just sit and listen.
This time i had to realize it actually has been almost 25 years since my mother died of the very disease i am now fighting - and i had to come up on stage and add my pitchy loud off key but in tune with moment voice to this night and to join the enormous chorus of people of who know -
like my Mom always used to sing -
You have to get up every morning with a smile on your face…….. because attitude does matter -
and to join those who realize and live as - my beloved Liza always sings -
i will still love you -
No body gets tomorrow.
shoot for the stars - that way you will at least land in the heavens… heaven knows where… but at least you aimed up...Read Now
AND sometimes i do not love PTSD.
But i always love having an opportunity to upstage it - and two days later i was given that opportunity - in a big crowd - with many loved ones - respected ones - and cherished ones and as a former student suggested - it was my "Swan Song". Oddly, i had just been a duck and then a swan ( along with a 5 other critters ) in our local 'teachers' theatre company (run by my former educator and hero Gord Love ) - so i felt they were quite right - but deep inside my spine where my wings once touched - i hoped they were totally wrong….
I was lucky to have had this moment… as scarred and wingless as i felt i also felt beautiful and ready to fly… Jonathon Livingston Seagul i presume… began my inner stage voice…as i prepped my adhd brain - to travel at the speed of light… you see -
I am not your average duck - or gull - But i have learned there are many cool things about being different - (gay - adhd- army brat -funny- massive overbite) you get to meet all sorts of people in all sorts of places simply because there is no normal and there is no routine.
When your are different -- You do not run or swim in small circles. Your circles are laps around the planet. You swim with the stars a bit outside the usual orbit. But that is where you meet like minded folks - kind and inclusive - who want nothing more than to share and not take -these are the people who thrive on the outer rings - these are the souls that are always the brightest and thus our lives are - aside from the black hole moments - are lived in galactic technicolour.
One of the bright rings in this universe that is all things joyful - is my friend - and as i always say -
one of the best kept secrets in Canada - Jenica Rayne.
We have spun around each other for almost 15 years - Me always trying to get her voice heard - as what she says is so authentic - always kind and compassionate with a side of playful. We have been on stage together several times - in several cities - in several different venues but this night - we were both together to "Hit the Ground Running" (Which is name of her latest CD. )
And i was seconds away from having to intro her and her band at the CD release party.
So Cool. But Pluto cool. Both the planet and the dog -
But terrifying. I still had ( have ) a very serious anxiety disorder compliments of a very messy and complicated situation and was already fighting a tick, a stutter and nasty back sweats. To quell these i was self pep talking. "It"s all good Kelly. Trust the process of the universe, all is well in your world."
Because I thought it would be 50 people - we would meet before hand have a bite to eat - ( as we were doing ) and then we would pop over to the venue and i would do a quick 5 minutes - start finish.
Then i walked into the venue.
HAHAHAHAHAHAHAAH. Have you ever chewed tin foil with circa 1975 metal fillings in your back molars? As my mother would have said " Oh my stars and garters!" My face lit up like seven sparklers in charcoal a bar b-que doused with zippo lighter fluid and the smouldering butt of a Belvedere.
50 was actually closer to 500. The self pep talk became a direct order to defy my ptsd like feelings.
"Throw yourself into the universe Kelly…It will catch you. it always does."
This universe was a see of all ages - thus the swan comment from the former student - and i knew if i could just worm my way through or even past the black hole of fear i would be ok.
I rocketed for the stage, signalled to the sound guy ( yes they are almost always guys - my favourite Ian from Peterborough) that i was ready - walked centre stage and began to take up as much space as i could.
" Hello! Hello Everyone! Welcome! Welcome to - to What is this place called this week? I think it has changed hands more times than a box of U.S. weapons - and had has been called more names than Harper has - i mean the person - the cat sweater guy - not the restaurant - which rules but not in that Vanderpump way - they actually hire skilled and beautiful people - both inside and out kind of people - not that people come in kinds…. - ok sorry - i digress - May i invite all of you to help me welcome a wonderful artist hit the ground running?
Excellent let's begin! My name is Kelly Dear and It is October! And October is Breast Cancer Awareness month! … And trust me i am very aware that i have breast cancer - ( i took off my jacket - and my scarf - and said " Look Victor - the flat side and Victoria - the stacked side - it's no secret now Victoria!! " (otherwise known as Myrtle) You are a one woman show and with out a bra you too will hit the ground running! Thankfully my Myrtle - and people mind your Myrtle - get a mammogram not instagram - Myrtle cannot sing but Jenica SO can ( remember to pay your fees) - Please let us welcome the intoxicating - likely breathless from running yet another marathon - Jenica Rayne and her amazing band!!"
I am sure i rattled on longer than that… but that is all i can remember. I know there was an odd mix of loud hysterical laughter, some hysterical shock gasps, a few what's what? Omg's - and a few tears - all bracketed by very deep vibrational applause.
Jenica took the stage singing and the awkward hand smacks melded into rhythmic single claps. Whew done.
I slipped away into the darkness hoping to be quiet and hoping to find the bar - but it was like an old school kd Lang coming out party - so many people wanting to know 'when did you know?' 'How did you find out? ' I got swarmed. I panicked and kept trying to move - to just work the room - trying to saying hello to as many people as i could and reasssuirng them it would be fine, that i start chemo in two days and we will see how it goes. Self talk. " Gratitude Kelly. Be graceful. Be positive. Listen."
Some people took my hand and looked at me like i was already dead. A few likely wished i was. Others shared their victories and still more shared losses. I knew in these moments that silence about cancer - silence about breast cancer - silence about being gay and having breast cancer was not going to be an option. Just like coming out in the late 80's - early 90's - Silence Equals Death.
Death is not an option.
Nor is being silenced again out of shame and fear. Neither was allowing ptsd - or my fear - to stop me from going to infinity - and perhaps to Tiffany's to get an infinity band - and beyond - but not to Bed Bath and Beyond - so not ready to have a bath with one boob missing - although i may be able to hold the book up easier….
Sorry i digress ...
Back - back - to the stage and back to the real stars of the night...
Dr. P gave me the big chemo pep talk with the very clear expectation that i would be starting as soon as possible. I tried to worm out of it for a week jus to get my head wrapped it. Her resonse was pretty simple.
However, before you can begin chemo therapy - and ps therapy to me is scented candles a tissue and empathy for your pathetic life while sitting in a comfy chair. Chemo therapy - as i was about to learn is anything but that but you will need tissues.
Liza and i sat in the rear of the classroom - bad ass style - we went early - to get the seats at the back of the bus - but not so early that we looked desperate. HA. We so were. As if i have to sit thru this so i don't kill myself by catching a cold or something.
Slowly others came in and spaced themselves out in that don't sit too close to each other until somebody has to ask "Is anyone sitting here?". What a motley crew. A mid summers night de- streaming circa 1917 to me. I was the youngest - so i felt - in the class - until the 25 year old nurse came in. My arrogance was front and centre. - " No one can teach a "teacher." Liza quickly wiped the smug from my face and told me to pay attention. PS. people with ADHD need to fidget - give me back my pencil. (s)
I was super curious to see what was in my hand out package - oooooo powerpoint - love - and i was was doodling in the margins within seconds.
Admittedly, i was also very, very curious as to how this instructor was going to meet the needs of the multi lingual racially intersectional lgbt sprinkled - 40 year age spread with some of us having benefit$ - some clearly having le$$ and could you please speak up? continuum - that made up the whopping 20 of us in the room. And the 20 thousand of us around the province…and beyond..
Cancer - unlike healthcare - is very inclusive.
Essentially what you learn is that it can kill you. That getting an infection of ANY kind can kill you. That you will feel wretched. That you will likely wretch. That your hair will fall out. That your white blood cells will die along with everything else. That it hurts. Burns. And some of us will have a port put surgically in out chest - like a gas can direct to your artery, some will have a pic line hanging out of theirs arm, and some will take it right in the vein.
Right in the vein.
HA HAhahahahah.. that rhymes with pain hahahhahha and inane and Insane - annnnnnddddd how did i get in the hallway?
" Yes, I'm fine" i said to the nice nurse teacher lady who was holding my arm and walking with me towards the chemo room for the tour.
"Right this way everyone!" Sang the sweetest, cheeriest, most positive death deliverer ever. Who despite my best efforts to break free from - was not going to let me go - anywhere but forward.
SO - i can assure you i was schooled by that educator - her - patience - focus - positive vibe - knowledge - caring - understanding - ( have you noted the majority of care givers i have mentioned thus far are women?) and she added personal attention to the fact that i was going to get the kitchen sink of chemo and most of the others were going to have just the taps. ( not the Cruise private military school ( although as my mentor Bill Batten ( amazing artist - google him ) says cancer is war ) version where every one gets killed - ok just some... most of them….. us ..)
And thus with the help of Liza and nurse CAPTAIN MY CAPTAIN! I got as far as the waiting - we are all now waiting - waiting to live - waiting to die - waiting for a resolution that will never come - ( sometimes i love ptsd - hello titanic)
i tried to go into the room… just like i tried in 1987 when my Mom… was there - but not here- it is a different place a different time and space and yet the time and space between the pain and the fear and my fear is that we will be in the someplace…. the same place --- i too will wear her face...
And i am way too scared right now to face this.
ENTER MY FATHER. MWO BILL DEAR.
"mouse - turn around - go home - i have a pencil (s) for you."
Like i said.
Sometimes i love PTSD.